First, Reading.
Those of you who have been reading here for a while may remember that I always post a list of books read in each year. Although I have lower than usual confidence in my record-keeping for the wild and crazy 2011, here's the list (and please forgive me for not properly formatting titles):
At Home: A Brief History of Private Life by Bill Bryson
Adam and Eve a novel by Sena Jeter Naslund
A Walk in the Woods by Bill Bryson
Blood Almanac poems by Sandy Longhorn
Threshold poems by Jennifer Richter
Rookery poems by Traci Brimhall
The First Four Books poems by Louise Gluck
Gilead a novel by Marilynne Robinson
Housekeeping a novel by Marilynne Robinson
The Forgotten Garden a novel by Kate Morton
Wuthering Heights a novel by Emily Bronte
A Room with a View a novel by E.M. Forster
Pearl of China a novel by Anchee Min
Rebecca a novel by Daphne duMaurier
The House at Riverton a novel by Kate Morton
Sacred Hearts a novel by Sarah Dunant
A Gate at the Stair a novel by Lorrie Moore
Private Life a novel by Jane Smiley
Queen Bee Moms and King Pin Dads by Rosalind Wiseman
Heart's West: True Stories of Mail-Order Brides on the Frontier by Chris Enss
The Beekeeper's Apprentice a novel by Laurie King
Today's Special Dish poems by Nina Lindsay
A Reliable Wife a novel by Robert Goolrick
The Price of Privilege by Madeline Levine
WAIT poems by Alison Stine
The Everything Tween Book by Linda Sonna
Selected Poems by H.D.
Colosseum poems by Katie Ford
When Will There Be Good News? a novel by Kate Atkinson
The Stone Diaries by Carol Shields
up next:
No Eden poems by Sally Rosen Kindred, and
Death Comes to Pemberley a novel by P.D. James
And now, Retrospective.
Reader, Both Fires is almost three years old. My how time flies.
In those three years of my life as mother, we've gone from little ones, to big-ish ones; from the bird theater to exclamations of "Epic fail!" and "Whatever." (Oh, how I detest 'whatever.').
In those three years of my life as writer, we've gone from the fledgling poet just trying to connect to the world of poetry a bit, to the still-fledgling poet who is now sending out her work on a regular basis and sometimes even getting acceptances; from the mom who felt guilty taking time off to write, to the writer who knows her children will be better and stronger because she pursues her own creative life without apology.
In those three years of my life as person, we've gone from the teeny tiny woman (who, I'm glad to tell you, doesn't live here anymore) to a gal who, yes, has a chronic illness but who now has the right meds and a clearer diagnosis, and who can see her illness more as a sculpting life force than an invisible box.
I've enjoyed writing here, and I thank you from the bottom of my heart for reading.
Starting tomorrow, I invite you to join me at the stanza, where the story of mother, of writer, of person, poet and pilgrim, will continue. I hope to see you there.
Reader, I wish you peace, joy, and everything wonderful in 2012 and beyond.
Showing posts with label illness. Show all posts
Showing posts with label illness. Show all posts
12.31.2011
3.19.2011
Draft Report: Woven Together (plus a few odds and ends)
I'm cheating a little bit here because, although I did spend some time writing this morning, I didn't actually come up with a new draft. Lots of free writes, not lots of poems (this phraseology comes from how I used to prefer my toast when I was a kid: "Lotsa butter, not lotsa peanut butter, please!"). But last week I did draft and didn't have the time, or the presence of mind, to write about it here, and I used a method I've had good success with so wanted to share it.
It's called the "Cut-and-Shuffle" and you can find it on page 114 of The Practice of Poetry: Writing Exercises from Poets Who Teach edited by Robin Behn and Chase Twichell. The rules are that you write out two separate prose pieces of 10 or 12 lines, one depicting a quiet or physically inactive scene and the other depicting a physically active or emotionally charged scene. I don't always follow the rules exactly, but I've had good results with this when I have a couple of unrelated things lodged in my brain that seem to want to be connected.
The two things that were lodged in my brain were thus: I've been in and out of doctors' offices a lot this winter as I've tried to fight off the germ of the week, and at my last visit the doctor, speaking of my chronic illness, said, "Your disease is still ripening." I took him to mean that we may not yet be seeing its full face, its full effect on my body. Not a real happy thought, but the phrase wouldn't leave my mind. That's thing one.
Thing two is a story I came across at a local museum, about the people of a prairie town building a chapel in honor of the Virgin Mary as the terrible locust infestations of the 1870s were in full swing. I am Catholic, so I've seen people's devotion to the Virgin Mary up close all my life. But I was still amazed by this story: people fighting for their lives and livelihoods finding the time, the money, and the energy to build a little church in the hopes it would turn their fortunes.
When one popped into my thoughts, so would the other in turn. I knew my brain wanted to connect the two, but I didn't know why. Enter the Cut-and-Shuffle.
The resulting draft is a poem alternating between what the doctor says, and the patient's thoughts which flash to scenes of the locust plague and the chapel. I did a little bit of research before writing the poem, and pulled anecdotes in: livestock being eaten alive, and a little boy who gathered locusts for 3 cents a bushel. I also borrowed Jennifer Richter's trick (discussed here) of using the second person / "you." And as I often do, I looked at the etymology of important words; this time chapel. It comes from the Latin meaning "a small cape" which gave me this little bit of the poem:
... You sigh / against the hollow cheeks of the farm wives. / Their husbands are building a chapel to the Virgin / Mary, an offering, a small cape of prayer / for their burdened shoulders ...
and also helped me get to the issue of protection in the poem, the way a sick mother feels unable to protect her children. I hope the result is an effective weaving of the two scenes. I'm also excited because, even though I've lived in this prairie state for almost 14 years, this is the first time I've told one of its stories in a poem. So, despite today's dead ends and a few weeks of my regular writing schedule being in a jumble, I'm glad to have this one in my "Active Work" folder.
And as for odds and ends, some of my time this morning was spent updating the status of the few submissions I have out there. One rejection from a newer, smaller journal I'd hoped to have a chance with - bummer. One note from a journal that basically said they hadn't rejected me yet ("your submission has been read once and passed on to the next step in our editorial process"). I thought it was nice of them to bother with an update. And happily, one acceptance from a new journal called Adanna, due out this summer. Hooray for that!
It's called the "Cut-and-Shuffle" and you can find it on page 114 of The Practice of Poetry: Writing Exercises from Poets Who Teach edited by Robin Behn and Chase Twichell. The rules are that you write out two separate prose pieces of 10 or 12 lines, one depicting a quiet or physically inactive scene and the other depicting a physically active or emotionally charged scene. I don't always follow the rules exactly, but I've had good results with this when I have a couple of unrelated things lodged in my brain that seem to want to be connected.
The two things that were lodged in my brain were thus: I've been in and out of doctors' offices a lot this winter as I've tried to fight off the germ of the week, and at my last visit the doctor, speaking of my chronic illness, said, "Your disease is still ripening." I took him to mean that we may not yet be seeing its full face, its full effect on my body. Not a real happy thought, but the phrase wouldn't leave my mind. That's thing one.
Thing two is a story I came across at a local museum, about the people of a prairie town building a chapel in honor of the Virgin Mary as the terrible locust infestations of the 1870s were in full swing. I am Catholic, so I've seen people's devotion to the Virgin Mary up close all my life. But I was still amazed by this story: people fighting for their lives and livelihoods finding the time, the money, and the energy to build a little church in the hopes it would turn their fortunes.
When one popped into my thoughts, so would the other in turn. I knew my brain wanted to connect the two, but I didn't know why. Enter the Cut-and-Shuffle.
The resulting draft is a poem alternating between what the doctor says, and the patient's thoughts which flash to scenes of the locust plague and the chapel. I did a little bit of research before writing the poem, and pulled anecdotes in: livestock being eaten alive, and a little boy who gathered locusts for 3 cents a bushel. I also borrowed Jennifer Richter's trick (discussed here) of using the second person / "you." And as I often do, I looked at the etymology of important words; this time chapel. It comes from the Latin meaning "a small cape" which gave me this little bit of the poem:
... You sigh / against the hollow cheeks of the farm wives. / Their husbands are building a chapel to the Virgin / Mary, an offering, a small cape of prayer / for their burdened shoulders ...
and also helped me get to the issue of protection in the poem, the way a sick mother feels unable to protect her children. I hope the result is an effective weaving of the two scenes. I'm also excited because, even though I've lived in this prairie state for almost 14 years, this is the first time I've told one of its stories in a poem. So, despite today's dead ends and a few weeks of my regular writing schedule being in a jumble, I'm glad to have this one in my "Active Work" folder.
And as for odds and ends, some of my time this morning was spent updating the status of the few submissions I have out there. One rejection from a newer, smaller journal I'd hoped to have a chance with - bummer. One note from a journal that basically said they hadn't rejected me yet ("your submission has been read once and passed on to the next step in our editorial process"). I thought it was nice of them to bother with an update. And happily, one acceptance from a new journal called Adanna, due out this summer. Hooray for that!
3.18.2011
Gratitude Journal, In the Face of Unspeakable Suffering
It's hard not to puzzle over the problem of suffering as we watch the events in Japan unfolding. It's hard not to wonder why such horrible things have to happen, what good could ever come of it.
About three years into my life of chronic pain, I was in a phase of really wanting an answer to the problem of suffering. I would never compare living with pain to the immense suffering of those in Japan right now -- after all, I always had food, water, medicine, and a roof over my head -- but when you are in pain all the time, you do sometimes begin to wonder what the purpose of it is. You want there to be a purpose.
I did a lot of reading about the problem of suffering (you know, the usuals, Job, Prometheus, the Church Fathers). None of it helped, although I did feel a kinship to Prometheus who never stopped speaking out about the injustice of his punishment. None of the theological arguments worked for me. For example, that suffering entered the world because of the Fall, that it was our share in the mystery of the Cross. I needed an answer that would fit for everyone on Earth, not just people who believed certain things.
Over time, I realized there was no answer to the problem of suffering that would satisfy me on an intellectual level. I came to my own uneasy peace with suffering by letting it teach me. And here's what it taught me (some of which I already knew, but now know in a much deeper way):
1. Be ever grateful -- See all the miracles. Know that they are miracles. Say thank you when you turn the faucet on and water comes out, when you zip up your coat against a cold wind, when your lover walks through the door, when the furnace clicks on, when you can buy groceries and not think twice about it, when the sunset is so beautiful your heart skips a beat.
3. Live with compassion -- Compassion from the Latin for "to suffer together." Understand that others suffer, though you may not see it. Hold the suffering close in mind and heart. When you can, tell someone who's suffering that you are thinking of them, that you care.
2. Understand what's important -- It's far too simplistic to say, "Live every day as if it's your last." We all know the chicken for tomorrow's dinner must be thawed today. But didn't all our worries seem small once we heard the news of Japan (or of Haiti, or Katrina, or the Indian Ocean tsunami, or September 11th)? So, have your small worries; you're only human after all. But don't put them in a 5x7 frame and hang them on your wall. Let them be part of a large landscape. Keep them perspective.
I no longer demand an answer to the problem of suffering. I see that the answer is a way of life, and I do my best to live it. This is my only comfort in the days following the earthquake and tsunami in Japan, and it's my only comfort when pain is getting the better of me. But it's comfort enough.
About three years into my life of chronic pain, I was in a phase of really wanting an answer to the problem of suffering. I would never compare living with pain to the immense suffering of those in Japan right now -- after all, I always had food, water, medicine, and a roof over my head -- but when you are in pain all the time, you do sometimes begin to wonder what the purpose of it is. You want there to be a purpose.
I did a lot of reading about the problem of suffering (you know, the usuals, Job, Prometheus, the Church Fathers). None of it helped, although I did feel a kinship to Prometheus who never stopped speaking out about the injustice of his punishment. None of the theological arguments worked for me. For example, that suffering entered the world because of the Fall, that it was our share in the mystery of the Cross. I needed an answer that would fit for everyone on Earth, not just people who believed certain things.
Over time, I realized there was no answer to the problem of suffering that would satisfy me on an intellectual level. I came to my own uneasy peace with suffering by letting it teach me. And here's what it taught me (some of which I already knew, but now know in a much deeper way):
1. Be ever grateful -- See all the miracles. Know that they are miracles. Say thank you when you turn the faucet on and water comes out, when you zip up your coat against a cold wind, when your lover walks through the door, when the furnace clicks on, when you can buy groceries and not think twice about it, when the sunset is so beautiful your heart skips a beat.
3. Live with compassion -- Compassion from the Latin for "to suffer together." Understand that others suffer, though you may not see it. Hold the suffering close in mind and heart. When you can, tell someone who's suffering that you are thinking of them, that you care.
2. Understand what's important -- It's far too simplistic to say, "Live every day as if it's your last." We all know the chicken for tomorrow's dinner must be thawed today. But didn't all our worries seem small once we heard the news of Japan (or of Haiti, or Katrina, or the Indian Ocean tsunami, or September 11th)? So, have your small worries; you're only human after all. But don't put them in a 5x7 frame and hang them on your wall. Let them be part of a large landscape. Keep them perspective.
I no longer demand an answer to the problem of suffering. I see that the answer is a way of life, and I do my best to live it. This is my only comfort in the days following the earthquake and tsunami in Japan, and it's my only comfort when pain is getting the better of me. But it's comfort enough.
11.09.2010
On Privacy
privacy n. a state in which one is not observed or disturbed by others > freedom from public attention (from the OED)
With roots in Latin privatus apart from the public life, deprived of office, belonging to an individual. Originally the past participle of privare deprive, free, release, from privus one's own, single, individual (from Barnhart's Concise Dictionary of Etymology)
**
I have been thinking a lot about privacy lately. It began a week or so ago when I shared a(n admittedly) funny story about one of the children with a friend. Even though the subject matter of the story wasn't any big deal, and although I did not (and would not) tell it in the presence of the child, after I told it I had a sense that I shouldn't have. It dawned on me that perhaps the story was not mine to tell.
We parents all become accustomed to telling stories about our children from the time they are tiny -- oh, he smiled for the first time today! she's crawling now! you'll never guess what he said today! But at a certain point, children begin to have a more public life, a life outside the little family nest, and a growing awareness of themselves as an individual. They need to have a say about what the world ought to know about them, and what they would like to keep to themselves. I think my boys are coming into this stage, and their mom is just now catching up.
In fact, I want very much for them to have a sense of privacy. In a world where oversharing and TMI seem to be the rule rather than the exception, I think it's so important to teach children that there are some things that we need to protect, to keep free from public attention. I'm not talking only about bodies here, although that kind of privacy and modesty is important to me, too. I'm talking about anything that feels too precious to be shown to all the world. And I'm also talking about things that may not be precious, but that just don't have to be in the public domain, such as a person's reason for saying "no, thank you" to a party invitation, or an invitation to come over to play, or a request for information on any number of subjects. I am teaching them to say, "I'd rather not say," or, "It's something I'd like to keep to myself." I'm teaching them that, with a few important exceptions, they can say these things to anyone about anything, that they have a right to privacy.
**
Generally, I'm a pretty open person. But I remember how hard it was for me when I was very ill and needed a lot of help, and I felt like all privacy was lost to me. My body was the domain of doctor after doctor. Our front door became a revolving door for the many, many people who came to help us. People discussed "how she's doing" in the next room (or sometimes even in the same room) well within my ability to overhear. It's not that I wasn't grateful for the help, or that I necessarily had anything to hide. It's not that I resented people's concern about how I was doing, or that they were talking about it. The thing that bothered me was that I had lost control over what I kept free from public attention and what I didn't.
**
I also think about privacy in my writing life. There are some subjects, some poems, that are only for me. Some of them might even be pretty good poems, but they won't be going any farther than the Resting Drawer. I think we owe it to ourselves as writers, and to our readers, to honor a sense of privacy in what we put forth in the world. Probably every writer has a different sense of what is private and what is public for her. Probably the lines of private and public will shift over the span of a writing life. But it's something that I keep in the back of my mind as I write and submit.
**
Which brings me back to the children. And this blog. Perhaps you have heard about the woman who wrote about her child's Halloween costume in a blog post gone viral, and the opinion of some people that she is exploiting her children by writing about them in the public sphere. I have tried to be both cautious and respectful when writing about my children here. I don't feel, for example, that posting a photo of Sister blowing out her birthday candles is exploiting or endangering her. And it would be pretty hard to write about motherhood without imparting an occasional anecdote. On the other hand, I will respect my children's growing sense of themselves, and will be thinking about which stories are mine to tell, and which just aren't.
With roots in Latin privatus apart from the public life, deprived of office, belonging to an individual. Originally the past participle of privare deprive, free, release, from privus one's own, single, individual (from Barnhart's Concise Dictionary of Etymology)
**
I have been thinking a lot about privacy lately. It began a week or so ago when I shared a(n admittedly) funny story about one of the children with a friend. Even though the subject matter of the story wasn't any big deal, and although I did not (and would not) tell it in the presence of the child, after I told it I had a sense that I shouldn't have. It dawned on me that perhaps the story was not mine to tell.
We parents all become accustomed to telling stories about our children from the time they are tiny -- oh, he smiled for the first time today! she's crawling now! you'll never guess what he said today! But at a certain point, children begin to have a more public life, a life outside the little family nest, and a growing awareness of themselves as an individual. They need to have a say about what the world ought to know about them, and what they would like to keep to themselves. I think my boys are coming into this stage, and their mom is just now catching up.
In fact, I want very much for them to have a sense of privacy. In a world where oversharing and TMI seem to be the rule rather than the exception, I think it's so important to teach children that there are some things that we need to protect, to keep free from public attention. I'm not talking only about bodies here, although that kind of privacy and modesty is important to me, too. I'm talking about anything that feels too precious to be shown to all the world. And I'm also talking about things that may not be precious, but that just don't have to be in the public domain, such as a person's reason for saying "no, thank you" to a party invitation, or an invitation to come over to play, or a request for information on any number of subjects. I am teaching them to say, "I'd rather not say," or, "It's something I'd like to keep to myself." I'm teaching them that, with a few important exceptions, they can say these things to anyone about anything, that they have a right to privacy.
**
Generally, I'm a pretty open person. But I remember how hard it was for me when I was very ill and needed a lot of help, and I felt like all privacy was lost to me. My body was the domain of doctor after doctor. Our front door became a revolving door for the many, many people who came to help us. People discussed "how she's doing" in the next room (or sometimes even in the same room) well within my ability to overhear. It's not that I wasn't grateful for the help, or that I necessarily had anything to hide. It's not that I resented people's concern about how I was doing, or that they were talking about it. The thing that bothered me was that I had lost control over what I kept free from public attention and what I didn't.
**
I also think about privacy in my writing life. There are some subjects, some poems, that are only for me. Some of them might even be pretty good poems, but they won't be going any farther than the Resting Drawer. I think we owe it to ourselves as writers, and to our readers, to honor a sense of privacy in what we put forth in the world. Probably every writer has a different sense of what is private and what is public for her. Probably the lines of private and public will shift over the span of a writing life. But it's something that I keep in the back of my mind as I write and submit.
**
Which brings me back to the children. And this blog. Perhaps you have heard about the woman who wrote about her child's Halloween costume in a blog post gone viral, and the opinion of some people that she is exploiting her children by writing about them in the public sphere. I have tried to be both cautious and respectful when writing about my children here. I don't feel, for example, that posting a photo of Sister blowing out her birthday candles is exploiting or endangering her. And it would be pretty hard to write about motherhood without imparting an occasional anecdote. On the other hand, I will respect my children's growing sense of themselves, and will be thinking about which stories are mine to tell, and which just aren't.
10.26.2010
My Body, My House
Today the wind is blowing rain sideways into the west windows. I am glad to be inside my house. I would be glad to be inside any building today, but I've been thinking about this house a lot in the past few days because it was two years ago this week that we moved in, on the first snowy day of the year.
I have a complicated relationship with my house. It's a lovely house on a wooded lot. It's big enough but not too big. It's warm, comfortable, and has the one trait we looked for in a house for a long time: main floor laundry. The kitchen is roomy and good for working in (if you know what I mean) and has new-ish appliances. And after ten years of marriage, I could finally unpack our wedding gifts and put them in the cupboards. Husband's office in 10 minutes away, the kids' school is 4 minutes away. Attached garage, screen porch, perennial gardens. All good, all good, all good.
And yet, I never wanted this house. Our small, semi-crappy Cape Cod across the river was fine for me. Bad linoleum, drafty French doors, ancient appliances. Crooked patio. Detached one-stall garage (so sorry, Husband, you get to park in the street all winter). Backyard fence that, I promise you, is falling down in today's wind.
Oh, and stairs. Really steep, 1940s-building-code stairs. Stairs to our bedroom, stairs to the laundry, stairs to get in the front door and the back door. Stairs that really started causing problems when my arthritis worsened. Stairs that I once got stuck on, as in my hips didn't want to move anymore. Husband was out of town. I called Ben, then age five, out of his bed, to help me sit down and slide down the stairs. I slept on the couch that night, and finally accepted that we had to move.
So, long story longer, we found this house which I had driven by and admired many times before. Once when I drove by there was a for sale sign in the yard. We closed on both houses the week the week of the banking crisis of 2008.
And now here we are two years later. Physically, I am so much more comfortable in this house. I feel safer because I know I can manage my days, the laundry, and even the 1970s-building-code stairs (which are much less steep than stairs in older houses). But I still feel like I'm clunking around in someone else's house. It might just take some time, or maybe some effort (I confess, the way I see it, if I have time to "decorate," I have time to write and I'd rather write). It might just be slow acceptance of what a chronic illness can mean for a life, a family. I think this was a level of acceptance that was hard for me: to admit that my illness made it necessary for us to buy a new house.
**
Dear House, strong, warm house, thank you for protecting me and my family from wind and weather and cold. Thank you for housing my treasures (few though they are), and my Treasures. I'm sorry I've left you wearing your 80s garb; I hope you can get used to it. Thank you for making my every day easier. And don't mind me for being slow to warm up to you. I know I'll come around.
I have a complicated relationship with my house. It's a lovely house on a wooded lot. It's big enough but not too big. It's warm, comfortable, and has the one trait we looked for in a house for a long time: main floor laundry. The kitchen is roomy and good for working in (if you know what I mean) and has new-ish appliances. And after ten years of marriage, I could finally unpack our wedding gifts and put them in the cupboards. Husband's office in 10 minutes away, the kids' school is 4 minutes away. Attached garage, screen porch, perennial gardens. All good, all good, all good.
And yet, I never wanted this house. Our small, semi-crappy Cape Cod across the river was fine for me. Bad linoleum, drafty French doors, ancient appliances. Crooked patio. Detached one-stall garage (so sorry, Husband, you get to park in the street all winter). Backyard fence that, I promise you, is falling down in today's wind.
Oh, and stairs. Really steep, 1940s-building-code stairs. Stairs to our bedroom, stairs to the laundry, stairs to get in the front door and the back door. Stairs that really started causing problems when my arthritis worsened. Stairs that I once got stuck on, as in my hips didn't want to move anymore. Husband was out of town. I called Ben, then age five, out of his bed, to help me sit down and slide down the stairs. I slept on the couch that night, and finally accepted that we had to move.
So, long story longer, we found this house which I had driven by and admired many times before. Once when I drove by there was a for sale sign in the yard. We closed on both houses the week the week of the banking crisis of 2008.
And now here we are two years later. Physically, I am so much more comfortable in this house. I feel safer because I know I can manage my days, the laundry, and even the 1970s-building-code stairs (which are much less steep than stairs in older houses). But I still feel like I'm clunking around in someone else's house. It might just take some time, or maybe some effort (I confess, the way I see it, if I have time to "decorate," I have time to write and I'd rather write). It might just be slow acceptance of what a chronic illness can mean for a life, a family. I think this was a level of acceptance that was hard for me: to admit that my illness made it necessary for us to buy a new house.
**
Dear House, strong, warm house, thank you for protecting me and my family from wind and weather and cold. Thank you for housing my treasures (few though they are), and my Treasures. I'm sorry I've left you wearing your 80s garb; I hope you can get used to it. Thank you for making my every day easier. And don't mind me for being slow to warm up to you. I know I'll come around.
10.01.2010
The Tale of the Teeny Tiny Woman
Once upon a time there was a teeny, tiny woman.
The teeny tiny woman kept getting teenier and tinier no matter how much she ate. And she ate a lot. Two years ago this week the teeny tiny woman was very teeny tiny. You could count all her ribs from the front or the back, and you could see her lymph nodes through her skin. She had a “depleted posterior” and “temporal wasting” (this is how doctors describe being very teeny tiny). Her hair was falling out, her stomach was upset all the time, and she didn’t sleep very well at night because of night-sweats that drenched her sheets and woke her up. Two years ago this week, the teeny tiny woman stepped on the scale, and it said 89.
The teeny tiny woman went to her doctor, again. She had been to the doctor many, many times before, but this time when the needle on the scale dropped below 90, it scared her. This time, she thought the doctor might be concerned, too.
Turns out, the teeny tiny woman was wrong about that. The doctor spent five minutes with her, lectured her about contraception, and then stood up to leave. When the teeny tiny woman asked the doctor to wait, she wanted to discuss the issue of why she kept losing weight, the doctor said, “I don’t know what to tell you about that,” and walked out of the room (for those who are curious, this doctor is a woman).
The teeny tiny woman had been summarily dismissed by doctors many times before — doctors who couldn’t figure out what was wrong; doctors who, perhaps, didn’t believe her when she told them how much she ate. She knew her case was complicated. She was also being treated for severe inflammatory arthritis with a mild lupus suggestion, for a whole constellation of symptoms (as the doctors said) consistent with autoimmune disease. She was not a textbook case of anything. All the easy diagnoses that could explain weight loss — thyroid disease, refractory sprue, brain tumor — had been ruled out.
But the teeny tiny woman was also desperate to know why she seemed to be wasting away. She was afraid she might someday waste away altogether. Being the mother of three young children, the teeny tiny woman felt strongly that this would be a bad outcome.
So the teeny tiny woman gathered her strength (what little she had), her courage (what little she had), and her medical records (the whole two-foot stack of them), and went to the World Famous Medical Clinic. She felt sure that the Best Doctors In The World, the Clinic Of Last Resort, would be able to help her.
The teeny tiny woman will spare you all the gory details of her experience at the World Famous Medical Clinic. She thinks all you need to know is this: (1) They foisted her off on all the eating disorder doctors; (2) She left with this diagnosis: “Sometimes women just get these vague symptoms;” and (3) They later wrote a letter to her insurance company stating that the teeny tiny woman had not been truthful in the information she gave the doctors in clinical exam. In other words, the Best Doctors In The World also couldn’t find what was wrong, and didn’t believe her story. Then they went the extra mile by calling her a liar, and making sure her insurance company wouldn’t pay for all the fancy tests they ordered. Luckily for the teeny tiny woman, she had asked them to send the letter to her home, and thus the insurance company never saw it; so they did pay for some of the fancy tests.
It turns out that one of the very big problems in the treatment of this whole constellation of symptoms was actually a very small problem. A very, very small problem. A Teeny Tiny Problem. That being: the teeny tiny woman, due to a data entry error at the doctor’s office, was getting only a teeny tiny fraction of the medication intended to manage the constellation.
The teeny tiny woman discovered this only because of luck, when her doctor asked, several months into the prescription, “What day of the week do you get your shot?” To which the teeny tiny woman replied, “The dose on the prescription label says ‘once a month.’ I get it on the 22nd of each month.” To which the doctor replied, “Oh, that’s a mistake. You should be getting it once a week.”
And now for the good news:
Since the medication error was fixed, the teeny tiny woman is not so teeny tiny anymore. She is thickening. She is returning to her very peasant-like shape. She is growing out of her clothes. (Despite this, she does still get stopped in public by complete strangers who say “You’re just a little peanut, aren’t you?” And the teeny tiny woman still doesn’t know how to respond to that.)
The teeny-tiny woman would like you to know that there are are two morals to this story.
The first is to love your extra 5 or 10 pounds like they are your best friend. Indeed, they are your best friend. Remember Tevye from Fiddler on the Roof singing, I’d see my wife, my Golde, looking like a rich man’s wife with a proper double-chin (which reminds me, I’ve been meaning to do a post called Everything I Need to Know I Learned from Tevye). Your extra 5 or 10 will protect you from cold; they are your cushion lest you become ill; they make your hugs soft and cushy (The teeny tiny woman pauses here to remember AJ saying, “Mom, I wish your hugs were soft and cushy like Grandma’s.”). They are a sign of plenty: the gift of having enough to eat. They are a sign that you are healthy, that your body has what it needs, and yes, just a little bit more. Love. Them.
(The teeny tiny woman admits she may soon be taking a slice of her own advice).
The second moral is this: always ask your doctor the name, dose, and frequency of the medication s/he is prescribing. If s/he gets annoyed and says, “Don’t worry about that. I’ll just fax it straight to the pharmacy,” do not say, “Okay,” like the teeny tiny woman did. Instead, say “I would like to have that information so that I’m sure I get the right thing at the pharmacy.”
The teeny tiny woman, feeling quite fortunate and much healthier than she was two years ago, is signing off now, but first wants to wish you health, prosperity, an extra 5 or 10 pounds, and a long, happy life.
And she wants to assure you that, yes, she has a new doctor.
L’chaim!
The teeny tiny woman kept getting teenier and tinier no matter how much she ate. And she ate a lot. Two years ago this week the teeny tiny woman was very teeny tiny. You could count all her ribs from the front or the back, and you could see her lymph nodes through her skin. She had a “depleted posterior” and “temporal wasting” (this is how doctors describe being very teeny tiny). Her hair was falling out, her stomach was upset all the time, and she didn’t sleep very well at night because of night-sweats that drenched her sheets and woke her up. Two years ago this week, the teeny tiny woman stepped on the scale, and it said 89.
The teeny tiny woman went to her doctor, again. She had been to the doctor many, many times before, but this time when the needle on the scale dropped below 90, it scared her. This time, she thought the doctor might be concerned, too.
Turns out, the teeny tiny woman was wrong about that. The doctor spent five minutes with her, lectured her about contraception, and then stood up to leave. When the teeny tiny woman asked the doctor to wait, she wanted to discuss the issue of why she kept losing weight, the doctor said, “I don’t know what to tell you about that,” and walked out of the room (for those who are curious, this doctor is a woman).
The teeny tiny woman had been summarily dismissed by doctors many times before — doctors who couldn’t figure out what was wrong; doctors who, perhaps, didn’t believe her when she told them how much she ate. She knew her case was complicated. She was also being treated for severe inflammatory arthritis with a mild lupus suggestion, for a whole constellation of symptoms (as the doctors said) consistent with autoimmune disease. She was not a textbook case of anything. All the easy diagnoses that could explain weight loss — thyroid disease, refractory sprue, brain tumor — had been ruled out.
But the teeny tiny woman was also desperate to know why she seemed to be wasting away. She was afraid she might someday waste away altogether. Being the mother of three young children, the teeny tiny woman felt strongly that this would be a bad outcome.
So the teeny tiny woman gathered her strength (what little she had), her courage (what little she had), and her medical records (the whole two-foot stack of them), and went to the World Famous Medical Clinic. She felt sure that the Best Doctors In The World, the Clinic Of Last Resort, would be able to help her.
The teeny tiny woman will spare you all the gory details of her experience at the World Famous Medical Clinic. She thinks all you need to know is this: (1) They foisted her off on all the eating disorder doctors; (2) She left with this diagnosis: “Sometimes women just get these vague symptoms;” and (3) They later wrote a letter to her insurance company stating that the teeny tiny woman had not been truthful in the information she gave the doctors in clinical exam. In other words, the Best Doctors In The World also couldn’t find what was wrong, and didn’t believe her story. Then they went the extra mile by calling her a liar, and making sure her insurance company wouldn’t pay for all the fancy tests they ordered. Luckily for the teeny tiny woman, she had asked them to send the letter to her home, and thus the insurance company never saw it; so they did pay for some of the fancy tests.
It turns out that one of the very big problems in the treatment of this whole constellation of symptoms was actually a very small problem. A very, very small problem. A Teeny Tiny Problem. That being: the teeny tiny woman, due to a data entry error at the doctor’s office, was getting only a teeny tiny fraction of the medication intended to manage the constellation.
The teeny tiny woman discovered this only because of luck, when her doctor asked, several months into the prescription, “What day of the week do you get your shot?” To which the teeny tiny woman replied, “The dose on the prescription label says ‘once a month.’ I get it on the 22nd of each month.” To which the doctor replied, “Oh, that’s a mistake. You should be getting it once a week.”
And now for the good news:
Since the medication error was fixed, the teeny tiny woman is not so teeny tiny anymore. She is thickening. She is returning to her very peasant-like shape. She is growing out of her clothes. (Despite this, she does still get stopped in public by complete strangers who say “You’re just a little peanut, aren’t you?” And the teeny tiny woman still doesn’t know how to respond to that.)
The teeny-tiny woman would like you to know that there are are two morals to this story.
The first is to love your extra 5 or 10 pounds like they are your best friend. Indeed, they are your best friend. Remember Tevye from Fiddler on the Roof singing, I’d see my wife, my Golde, looking like a rich man’s wife with a proper double-chin (which reminds me, I’ve been meaning to do a post called Everything I Need to Know I Learned from Tevye). Your extra 5 or 10 will protect you from cold; they are your cushion lest you become ill; they make your hugs soft and cushy (The teeny tiny woman pauses here to remember AJ saying, “Mom, I wish your hugs were soft and cushy like Grandma’s.”). They are a sign of plenty: the gift of having enough to eat. They are a sign that you are healthy, that your body has what it needs, and yes, just a little bit more. Love. Them.
(The teeny tiny woman admits she may soon be taking a slice of her own advice).
The second moral is this: always ask your doctor the name, dose, and frequency of the medication s/he is prescribing. If s/he gets annoyed and says, “Don’t worry about that. I’ll just fax it straight to the pharmacy,” do not say, “Okay,” like the teeny tiny woman did. Instead, say “I would like to have that information so that I’m sure I get the right thing at the pharmacy.”
The teeny tiny woman, feeling quite fortunate and much healthier than she was two years ago, is signing off now, but first wants to wish you health, prosperity, an extra 5 or 10 pounds, and a long, happy life.
And she wants to assure you that, yes, she has a new doctor.
L’chaim!
9.14.2010
Sister's Definition of Arthritis
"It's when your JOINT. HURTS. And so then you need a lot of relaxin' time."
7.02.2010
The Summer I've Been Waiting For
Nine years ago I was great with child number one. I was still working feverishly, with all the other Capitol-types, to finish a marathon legislative session. I was pining for days at home with baby, dreaming of all the fun and wonderful things we'd do as s/he grew up, imagining his or her future siblings, dreaming up my life as Mother.
As so often happens, the dream and reality didn't match up, at least not right away. Because I couldn't possibly have imagined what days, weeks and years at home with three small ones was really like (for the benefit of those who are considering this or a similar feat, we will now draw the curtains of charity on the gory details of days, weeks, and years at home with three small ones). And because the dream didn't include the highly inconvenient development of a serious chronic illness.
But now, here we are. Everyone can walk. Everyone is out of diapers. Everyone can get into their own car seats. Everyone can make their own sandwiches. Nobody really has to have a nap (well....... except for me, but even I am learning to live with a half-hour timeslot during which no child is allowed to be in my room or speak to me unless they are vomiting or bleeding).
And here I am, feeling stronger, more stable, gaining weight, learning to live well within the limits of my illness.
And watch us go! We've had so much fun this summer. A week at camp in the north woods. Kickball with friends from school. Trips to the farmer's market for fresh produce. Trips to the library for fresh books. Impromptu tennis lessons with our good family friends, the K-woods. This afternoon, we're going swimming at a friend's house. These are all things that, between the Baby Factor and my illness, have never been possible before. I am loving every minute of this summer, and I fully admit to neglecting the housework, the gardens, and what I not-so-lovingly refer to as The Grocery Situation (in which there are, so often, none to be found in the house), in order to run, bike, swim, and play with my kids.
It's true that I am still weighing every day with the one previous and the one coming next, to make sure I don't Overdo It. It's true that the baby I was pining for nine years ago, my almost-9-yo Bean, has to carry the heavy gear. And no, I don't really run with them, but I walk along as they run. It's true that I have sometimes ended up a little more sore than I would've been if we had not gone on a given excursion on a given day. But I'm so grateful to have the strength and stamina to enjoy this summer, in this way, with my kids. It's been a long time coming.
I hope you're having a wonderful summer, too.
5.19.2010
Guilt
On Sunday, I went to hear Maya Angelou speak. It was stunning to see her on stage, this beautiful and, yes, old woman who struggled to stand on her age-weary knees, yet was the embodiment of grace and poise. It was wonderful to hear her stories of growing up, stories of becoming famous, stories of becoming wise and then wiser. Her poems, of course, are incredible and brave and many times funny. She reads them not just like a poet, but as a spoken word artist putting her body and her powers of expression into every line. I laughed, I cried, and I've been thinking a lot about a few things she said, and especially about this thing she said:
Guilt is a tedious companion.
She said that, and then she repeated it: Guilt is a tedious companion. And then she said: If you find yourself living with this companion, this guilt, give over.
Give over.
And right away my throat tightened and tears came to my eyes. While my mind raced to figure out why these words resonated so strongly for me, my heart had already answered the question in it's steady and sure voice: I feel guilty about my illness and the way it impacts the people I love.
Guilt is my tedious companion when I have to say no to my kids: No, I can't push you on the swings. No, I can't carry you to bed. No, I can't go on your field trip to the nature center. No, I can't get the knot out of your shoe. No, I can't go pick up your friend and have him over to play.
Guilt is my tedious companion when I have to ask for help: Husband, will you get the salad bowl down for me? Friend, will you go to Target for me? Friend, will you drive The Bean home from book club? Babysitter, will you help me take the kids to the library? Mom, will you bring some meals for my freezer?
Guilt is my tedious companion when I have to say no to people recruiting volunteers at school and at church: No, I can't help unload books for the book fair. No, I can't help set up tables for the project fair. No, I can't help plant the gardens. No, I can't help clean the sanctuary.
Guilt is my tedious companion when I consider all the extra money we spend because of my illness: Money to pay for doctor's appointments and prescriptions. Money to pay for someone to clean the house. Money to pay for grocery deliveries. Money to pay for someone to help with the laundry, the snow removal, the home-improvement projects (rare though they are), the gardening. Basically, money to pay for all the money-saving things we thought I would do as a stay-at-home-parent.
Guilt means: 1. the fact of having committed an offence or crime 2. a feeling of having done wrong or failed in an obligation (ding! ding! ding! we have a winner!). It comes from the Old English gylt (of unknown origin): crime, sin, fault, fine.
Believe me, I know I should not feel guilty about my illness, the limits it creates for our family, the strains it puts on our finances. There is no offence, no crime, no culpability. There is no wrongdoing. Just some unfortunate circumstances. Bad luck. And yet, I still feel that I have failed in an obligation: my obligation as wife, mother, daughter, and friend. Before I heard Maya Angelou say, "Guilt is a tedious companion," I don't think I even realized I felt guilty for all the things I can't or don't do, and for all the needs I have related to my illness.
Starting now, I am Giving Over.
Giving over to sadness, disappointment, and even sometimes discouragement. But no guilt. Giving over to the realities of life with "severe inflammatory arthritis with a mild lupus suggestion," to its limits and requirements. But no guilt. Giving over to the blessings of illness. Yes there are some: a slower pace of life, a communion with my body, a web of family and friends who help me when I need help and who keep me going when I am weary. But no guilt.
Dear Guilt, dear Tedious Companion, you and I are through. You are a waste of my time and energy.
I am Giving Over.
Guilt is a tedious companion.
She said that, and then she repeated it: Guilt is a tedious companion. And then she said: If you find yourself living with this companion, this guilt, give over.
Give over.
And right away my throat tightened and tears came to my eyes. While my mind raced to figure out why these words resonated so strongly for me, my heart had already answered the question in it's steady and sure voice: I feel guilty about my illness and the way it impacts the people I love.
Guilt is my tedious companion when I have to say no to my kids: No, I can't push you on the swings. No, I can't carry you to bed. No, I can't go on your field trip to the nature center. No, I can't get the knot out of your shoe. No, I can't go pick up your friend and have him over to play.
Guilt is my tedious companion when I have to ask for help: Husband, will you get the salad bowl down for me? Friend, will you go to Target for me? Friend, will you drive The Bean home from book club? Babysitter, will you help me take the kids to the library? Mom, will you bring some meals for my freezer?
Guilt is my tedious companion when I have to say no to people recruiting volunteers at school and at church: No, I can't help unload books for the book fair. No, I can't help set up tables for the project fair. No, I can't help plant the gardens. No, I can't help clean the sanctuary.
Guilt is my tedious companion when I consider all the extra money we spend because of my illness: Money to pay for doctor's appointments and prescriptions. Money to pay for someone to clean the house. Money to pay for grocery deliveries. Money to pay for someone to help with the laundry, the snow removal, the home-improvement projects (rare though they are), the gardening. Basically, money to pay for all the money-saving things we thought I would do as a stay-at-home-parent.
Guilt means: 1. the fact of having committed an offence or crime 2. a feeling of having done wrong or failed in an obligation (ding! ding! ding! we have a winner!). It comes from the Old English gylt (of unknown origin): crime, sin, fault, fine.
Believe me, I know I should not feel guilty about my illness, the limits it creates for our family, the strains it puts on our finances. There is no offence, no crime, no culpability. There is no wrongdoing. Just some unfortunate circumstances. Bad luck. And yet, I still feel that I have failed in an obligation: my obligation as wife, mother, daughter, and friend. Before I heard Maya Angelou say, "Guilt is a tedious companion," I don't think I even realized I felt guilty for all the things I can't or don't do, and for all the needs I have related to my illness.
Starting now, I am Giving Over.
Giving over to sadness, disappointment, and even sometimes discouragement. But no guilt. Giving over to the realities of life with "severe inflammatory arthritis with a mild lupus suggestion," to its limits and requirements. But no guilt. Giving over to the blessings of illness. Yes there are some: a slower pace of life, a communion with my body, a web of family and friends who help me when I need help and who keep me going when I am weary. But no guilt.
Dear Guilt, dear Tedious Companion, you and I are through. You are a waste of my time and energy.
I am Giving Over.
5.11.2010
Hello From Inside the Glass Box
A few weeks ago, I was listening to NPR. As usual. The host was interviewing Randi Davenport, who has just come out with a book about the experience of having a child with severe mental illness (the book is The Boy Who Loved Tornadoes). Ms. Davenport spoke about how mental illness affects everyone in a family, and that there are limits and constraints for the families of the mentally ill that are not visible to those outside the family, and sometimes are not even visible to the family members themselves, unless they have just run right up against said limits. She compared it to living inside a glass box.
I know that box.
I would never compare my physical illness with severe mental illness. I am certain my illness is easier to manage, easier to live with. But the description of the invisible constraints -- the glass box -- fits my experience of living with chronic illness perfectly.
From outside the glass box, you might see me and not think anything is amiss. Especially if I have washed my hair and put on lipstick that day. From outside the glass box, our family looks like a completely "normal" family (if there is such a thing): making our way to little league games, showing up for the spring concert, going to church, stopping by the grocery store, working in the gardens. And from inside the glass box, we can see out to the world of "regular" people -- that is, people who are not dealing with serious illness on top of all the other ups and downs of life -- and feel almost a part of it. Hey, we can do most of that stuff we see other families doing. We can, some days, some weeks, forget about the glass box, the constraints and limits we live within because Mommy Has Arthritis.
But not for long. Because if we forget about (or, more likely, ignore) those constraints for too long, or one too many times, things start falling apart. That is, I start feeling too sore and too tired. And you know how that goes...... when mommy's not okay, nobody's okay.
So, while I can see through the constraints out into the regular world, and even when I want to forget about them, the limits of my illness are never far from my mind. There are some things I just can't do: like untie knots from children's shoes, like change the beds, like wear sassy red ballet flats, like open the open the new jar of olives (believe me, I have come almost to tears over not being able to open the new jar of olives). I have to be very careful not to plan too many things in one week. I have to rest in the afternoon almost every day. I can't do "normal" things like go to the grocery store on my own, fold the laundry, mow the lawn, or go to the library without help (well..... sometimes I do that, but I really shouldn't). I feel like I am always weighing things, every day, every week -- If I do this, can I also do that? Or would that be too much? If I do too much, I get too sore, too tired.
My family lives within the glass box, too. Many times Husband and I have said "no" to things that, aside from my illness, probably would have been eminently do-able. There are lots of things I would like to do with the kids -- take them on a bike ride, go to the Science Museum -- that I can only do if Husband is with us. We hardly ever entertain. We limit our travel. We think carefully about what kinds of trips and vacations are do-able (water park = no; tent-camping = no; trip to Grandma's = yes). And, of course, there was the decision to buy a new, one-level, arthritis-friendlier house.
The worst for me is when the kids ask me to do something with them -- build a snowman, play basketball, push them on the swings -- and I have to say no. Some days I can do those things, plenty of days I can't. That's when I see the glass box as more of a brick wall. A brick wall that I would like to take a sledgehammer to.
So, the constraints are real even if they are invisible to the outside world, and even if we can almost forget about them sometimes, some days, for a while. Some are big, some are not so big. Sometimes I try to run right through them and -- smack!-- meet up with the glass box face to face.
On the other hand, there are a lot of people who live in the glass box for a thousand other reasons. And that's one thing I appreciate more since developing a chronic illness: that you never know what someone might be struggling with; that granting someone compassion and understanding even if you don't know why they need it, is giving a great gift.
Of course, someone more articulate than I said it best. He's known as Philo of Alexandria (20 BCE - 50 CE), and he said:
Be kind, for everyone you meet is fighting a great battle.
I know that box.
I would never compare my physical illness with severe mental illness. I am certain my illness is easier to manage, easier to live with. But the description of the invisible constraints -- the glass box -- fits my experience of living with chronic illness perfectly.
From outside the glass box, you might see me and not think anything is amiss. Especially if I have washed my hair and put on lipstick that day. From outside the glass box, our family looks like a completely "normal" family (if there is such a thing): making our way to little league games, showing up for the spring concert, going to church, stopping by the grocery store, working in the gardens. And from inside the glass box, we can see out to the world of "regular" people -- that is, people who are not dealing with serious illness on top of all the other ups and downs of life -- and feel almost a part of it. Hey, we can do most of that stuff we see other families doing. We can, some days, some weeks, forget about the glass box, the constraints and limits we live within because Mommy Has Arthritis.
But not for long. Because if we forget about (or, more likely, ignore) those constraints for too long, or one too many times, things start falling apart. That is, I start feeling too sore and too tired. And you know how that goes...... when mommy's not okay, nobody's okay.
So, while I can see through the constraints out into the regular world, and even when I want to forget about them, the limits of my illness are never far from my mind. There are some things I just can't do: like untie knots from children's shoes, like change the beds, like wear sassy red ballet flats, like open the open the new jar of olives (believe me, I have come almost to tears over not being able to open the new jar of olives). I have to be very careful not to plan too many things in one week. I have to rest in the afternoon almost every day. I can't do "normal" things like go to the grocery store on my own, fold the laundry, mow the lawn, or go to the library without help (well..... sometimes I do that, but I really shouldn't). I feel like I am always weighing things, every day, every week -- If I do this, can I also do that? Or would that be too much? If I do too much, I get too sore, too tired.
My family lives within the glass box, too. Many times Husband and I have said "no" to things that, aside from my illness, probably would have been eminently do-able. There are lots of things I would like to do with the kids -- take them on a bike ride, go to the Science Museum -- that I can only do if Husband is with us. We hardly ever entertain. We limit our travel. We think carefully about what kinds of trips and vacations are do-able (water park = no; tent-camping = no; trip to Grandma's = yes). And, of course, there was the decision to buy a new, one-level, arthritis-friendlier house.
The worst for me is when the kids ask me to do something with them -- build a snowman, play basketball, push them on the swings -- and I have to say no. Some days I can do those things, plenty of days I can't. That's when I see the glass box as more of a brick wall. A brick wall that I would like to take a sledgehammer to.
So, the constraints are real even if they are invisible to the outside world, and even if we can almost forget about them sometimes, some days, for a while. Some are big, some are not so big. Sometimes I try to run right through them and -- smack!-- meet up with the glass box face to face.
On the other hand, there are a lot of people who live in the glass box for a thousand other reasons. And that's one thing I appreciate more since developing a chronic illness: that you never know what someone might be struggling with; that granting someone compassion and understanding even if you don't know why they need it, is giving a great gift.
Of course, someone more articulate than I said it best. He's known as Philo of Alexandria (20 BCE - 50 CE), and he said:
Be kind, for everyone you meet is fighting a great battle.
5.08.2010
May is the Stiffest Month
Dear Blog,
I admit it: I've been avoiding you.
I've been avoiding you because it's National Arthritis Month and I feel like I should write about living with chronic illness. And even though there's part of me that wants to write about my experience of illness, there's a bigger part of me that prefers to think and write about other things, to turn away from that shadowed corner of my life.
Blog, you know I'm afraid of coming across as a complainer. I'm still afraid of that, and probably always will be. Another struggle is that I wonder where on earth to begin. Do I begin during my childhood when the symptoms first began but - thank goodness - did not endure? Do I begin in my late twenties when I just didn't feel right, always tired, always sick, always cold? Or when I had a hard time conceiving and no one knew why? Or after The Bean was born when the joint pain I had as a child returned? Or after AJ was born when I was so sore and fatigued that I would lie down on the floor to comfort him because I couldn't lift him up? Where should I weave in the subplot of the gluten-free diet and how that helped tremendously..... for a while? Does the story begin on the stairwell of my old house when, four months pregnant with Sister, I dragged myself upstairs, resting on every step and wondering where the second-trimester "bounce" was? Or on the morning several weeks later at my mom's house, the morning I woke up with hands and feet so stiff and sore I could hardly move them? Or does the story really start a month after that, when the pain and stiffness moved into my shoulders and hips, and became so intense that all the symptoms I'd experienced in previous years paled in comparison?
Truly, dear Blog, I do not know where to begin or how to tell the story. I'm not sure where the climax is. And since there really is no ending with chronic illness, only tomorrow and tomorrow and the next tomorrow (and, BTW, thank God for that), I don't know how to guide the narrative toward its conclusion.
But since it's National Arthritis Month, and since I claim to be a Writer, I resolve to write a few things about chronic illness, my experience of it, what I've learned, and anything else I can come up with during what remains of May. I've started jotting thoughts down in my notebook, things like: meds(!); illness and $$$; asking for help; World Famous Medical Clinic; things I used to do. And just one glance at the cover of this month's Arthritis Today magazine gives me a few more ideas:
"Fear of Falling?" Why, yes, funny you should ask.
"Medication News: Latest Side-effect Caution" Ugh, don't tell me.
"RECLAIM Your Passion!" Much easier now that I'm able to actually hold a pen most days.
"My Dog & Me: When people and their pets have arthritis." Well....... mmmmmm........ not so much that one.
So, Blog, sorry I've been avoiding you. I promise to be in touch more often. All my writing books say, "Write what you're afraid to write about." Ok, I'll try. I'll take up the Arthritis Month theme. I'll try to be brave and honest without complaining. I'll try to write stuff that's interesting and insightful, but some of it might just be getting through the muck. And, Blog? Happy Arthritis Month. If there is such a thing.
Love,
Molly
I admit it: I've been avoiding you.
I've been avoiding you because it's National Arthritis Month and I feel like I should write about living with chronic illness. And even though there's part of me that wants to write about my experience of illness, there's a bigger part of me that prefers to think and write about other things, to turn away from that shadowed corner of my life.
Blog, you know I'm afraid of coming across as a complainer. I'm still afraid of that, and probably always will be. Another struggle is that I wonder where on earth to begin. Do I begin during my childhood when the symptoms first began but - thank goodness - did not endure? Do I begin in my late twenties when I just didn't feel right, always tired, always sick, always cold? Or when I had a hard time conceiving and no one knew why? Or after The Bean was born when the joint pain I had as a child returned? Or after AJ was born when I was so sore and fatigued that I would lie down on the floor to comfort him because I couldn't lift him up? Where should I weave in the subplot of the gluten-free diet and how that helped tremendously..... for a while? Does the story begin on the stairwell of my old house when, four months pregnant with Sister, I dragged myself upstairs, resting on every step and wondering where the second-trimester "bounce" was? Or on the morning several weeks later at my mom's house, the morning I woke up with hands and feet so stiff and sore I could hardly move them? Or does the story really start a month after that, when the pain and stiffness moved into my shoulders and hips, and became so intense that all the symptoms I'd experienced in previous years paled in comparison?
Truly, dear Blog, I do not know where to begin or how to tell the story. I'm not sure where the climax is. And since there really is no ending with chronic illness, only tomorrow and tomorrow and the next tomorrow (and, BTW, thank God for that), I don't know how to guide the narrative toward its conclusion.
But since it's National Arthritis Month, and since I claim to be a Writer, I resolve to write a few things about chronic illness, my experience of it, what I've learned, and anything else I can come up with during what remains of May. I've started jotting thoughts down in my notebook, things like: meds(!); illness and $$$; asking for help; World Famous Medical Clinic; things I used to do. And just one glance at the cover of this month's Arthritis Today magazine gives me a few more ideas:
"Fear of Falling?" Why, yes, funny you should ask.
"Medication News: Latest Side-effect Caution" Ugh, don't tell me.
"RECLAIM Your Passion!" Much easier now that I'm able to actually hold a pen most days.
"My Dog & Me: When people and their pets have arthritis." Well....... mmmmmm........ not so much that one.
So, Blog, sorry I've been avoiding you. I promise to be in touch more often. All my writing books say, "Write what you're afraid to write about." Ok, I'll try. I'll take up the Arthritis Month theme. I'll try to be brave and honest without complaining. I'll try to write stuff that's interesting and insightful, but some of it might just be getting through the muck. And, Blog? Happy Arthritis Month. If there is such a thing.
Love,
Molly
5.01.2010
Confession Saturday: April Is Poetry Month Wrap-up Edition
I confess:
~ I am happy to announce the two winners of the Poetry Book Giveaway here at Both Fires. My friend and fellow South-of-the-River resident, Sarah K, will receive a copy of Denise Levertov's Selected Poems; and Sam will receive a trio of three books from the Laurel Poetry Collective: Tom Ruud's Unable For the World to Sleep, Deborah Keenan's Kingdoms, and Su Smallen's Weight of Light. Congratulations to Sarah and Sam, and thanks to everyone who participated in the giveaway.
~ I used the random number generator at random.org to select the winning comment numbers, but can't for the life of me figure out how to embed a screenshot of the winning numbers in this blog post. Sorry, I'm just a Powit, not a computer whiz.
~ I did not write a poem a day for NaPoWriMo, but I did write sixteen poems during the month of April. That's more than my usual productivity level by far.
~ Submitting to two contests this month (both with 4/30 deadlines) just about did me in. I confess, I no longer have the stamina I had at 18 or 25 (I would say "or at 30" but, sadly, my stamina was long gone by then). Then again, I didn't have nearly as many children then as I do now. The exercise of pulling poems together and sending them out was enough of a win for me. I really enjoyed it.
~ Even though I'm poetry-exhausted and thought I wouldn't write another poem for at least a week and maybe six months, another draft made its way onto paper this morning. I confess, I love the Muse.
~ I'm also happy to announce that my source at Laurel Poetry Collective gave me some of their overstock, so I have several consolation prizes to send out to people that are not Sarah K or Sam. I'll be continuing to draw names over the next few weeks and will send the additional books out as I go. So, good luck, again!
~ I confess, I almost hate to tell you this but......... May is --wait for it-- Arthritis Month. What do you think, should I try for an ache a day? I confess, if I weren't laughing about this, I'd be crying.
~ I confess, I have spent entirely too much time inside writing poems lately. I'm going outside to play with my kids. Happy May Day, all.
~ I am happy to announce the two winners of the Poetry Book Giveaway here at Both Fires. My friend and fellow South-of-the-River resident, Sarah K, will receive a copy of Denise Levertov's Selected Poems; and Sam will receive a trio of three books from the Laurel Poetry Collective: Tom Ruud's Unable For the World to Sleep, Deborah Keenan's Kingdoms, and Su Smallen's Weight of Light. Congratulations to Sarah and Sam, and thanks to everyone who participated in the giveaway.
~ I used the random number generator at random.org to select the winning comment numbers, but can't for the life of me figure out how to embed a screenshot of the winning numbers in this blog post. Sorry, I'm just a Powit, not a computer whiz.
~ I did not write a poem a day for NaPoWriMo, but I did write sixteen poems during the month of April. That's more than my usual productivity level by far.
~ Submitting to two contests this month (both with 4/30 deadlines) just about did me in. I confess, I no longer have the stamina I had at 18 or 25 (I would say "or at 30" but, sadly, my stamina was long gone by then). Then again, I didn't have nearly as many children then as I do now. The exercise of pulling poems together and sending them out was enough of a win for me. I really enjoyed it.
~ Even though I'm poetry-exhausted and thought I wouldn't write another poem for at least a week and maybe six months, another draft made its way onto paper this morning. I confess, I love the Muse.
~ I'm also happy to announce that my source at Laurel Poetry Collective gave me some of their overstock, so I have several consolation prizes to send out to people that are not Sarah K or Sam. I'll be continuing to draw names over the next few weeks and will send the additional books out as I go. So, good luck, again!
~ I confess, I almost hate to tell you this but......... May is --wait for it-- Arthritis Month. What do you think, should I try for an ache a day? I confess, if I weren't laughing about this, I'd be crying.
~ I confess, I have spent entirely too much time inside writing poems lately. I'm going outside to play with my kids. Happy May Day, all.
3.20.2010
Beer Books Eggs Marbles Wool
As a sophomore in college I studied in Ireland for an academic year. Along with regular college coursework, those of us on the Ireland Program went on lots of little side trips and educational tours all over the beautiful Emerald Isle. On one of these trips (I can't remember where it was, only that it was somewhere "down the country" as the Irish say to describe a location not in Dublin, generally taken to mean somewhere in a rural area south, west, or southwest of Dublin), we stopped at a pub for lunch. Or was it a store? The very large, very long sign over the door read "Beer Books Eggs Marbles Wool." It was both a pub and a store, I guess, and I remember laughing at the random assortment of items for sale there. Now, whenever I come across a truly random assortment of anything, I think to myself, Beer Books Eggs Marbles Wool.
And this little story is a long-winded way of warning you that this post is nothing more than a random assortment of items. Beginning with:
What I'm Reading I just finished Denise Levertov's Selected Poems, and I am in love with them. When I came to the end of the last poem, I felt bereft. So I just started over at the beginning, and have been living all week with her beautiful words and images in my head. I read Denise Levertov several years ago, and I thought then that she was obviously a very smart, very good poet, technically strong and all that. But I didn't connect with her work on an emotional level, as I have now. The word that comes to mind when I think of her work is communion, in the sense of oneness or union. Her poems explore communion with others -- a husband, a son, a parent, all humanity; communion with nature; communion with God; even the uneasy communion of various selves within one person. About joy, she writes:
It is objective,
stands founded, a roofed gateway;
we cloud-wander
away from it, stumble
again towards it not seeing it,
enter cast-down, discover ourselves
'in joy' as 'in love.'
(From her poem "Joy")
I am three-quarters of the way through a re-read of Anna Karenina (Leo Tolstoy). I think I was in college the last time I read it. Through the years, Anna's adulterous and "glittering" eyes always stayed with me, and now I realize that there are a lot of glittering eyes in that book, not just Anna's. Again, I find that I am meeting this work on a new ground, one that as an innocent, unmarried, childless college student I could not have occupied. Whereas then I merely enjoyed it, now I am brokenhearted and exultant by turns. It's a great story, and Tolstoy's writing on the joys and heartaches of family life is stunning.
And, I've just begun a collection of poems by Alicia Ostriker called The Book of Seventy. I am paying close attention to the way she crafted these poems, to line and pacing in particular. I am interested in this because she, like me, uses punctuation sparsely. She uses it very sparsely. I like this in a poet. I think I can learn from her, and gain some confidence in using line, syntax, and rhythm to help pace a poem when punctuation marks seem like big bullies (! . ; !), as they so often do to me. Just for a taste, how about this line from "Family: Attempted Speech":
so family is a way of demonstrating
how incomplete we are while belonging to each other
What I Did on St. Patrick's Day I did not wear green. I did not drink beer. I did not cook or eat corned beef and cabbage. I did not sing "O Danny Boy." I started a new poetry class at my friendly neighborhood literary center (well, okay, it's Across The River as people say around here, but I'm still glad to have it within striking distance, if not in my actual neighborhood). It's the Deborah Keenan poetry class I mentioned in this post. Taking a class felt (and feels) like a big deal to me. For one, I'm shy in new groups. Also, the last time I took a class at this venue was before my health took a nose dive. So entering the doors felt like a milestone for me: Yes, I have the energy, the physical strength, the stamina to drive Across The River, park my car, walk into the building, find the classroom, and sit down ready to learn. Even eighteen months ago, this would not have been possible. A friend of mine who took the class a few years ago calls it "Poetry By Firehose." I left sopping wet and energized. And, as my Facebook status says: Molly is behind on housework, ahead on poems.
Weather Has Broken And my bones ache less. Hallelujah.
More Signs of Spring There is a crocus coming up in the front garden. The maintenance guys put the wind screens down at the baseball fields. The latter happened on Thursday when Sister and I were over at the high school complex taking a walk and getting some exercise (she wanted to do the long jump; who could say no to a 4yo who wants to try the long jump?). So, we (she) did the long jump, then we watched the maintenance crew put down the wind screens on the dugouts. But apparently, they should actually be called "parent screens" because the maintenance guy told me the real reason they installed them was to keep the players from being visible to the parents. This, apparently, discourages the parents from walking over to the dugout to give advice to their children during the game. That thought kind of wrecked my day for a few minutes.
In My Life, I've Loved Them All Say what you will about Facebook, but this week it brought me together (virtually speaking) with two dear friends from college that I probably wouldn't have connected with otherwise (it also delivered the happy news that a third friend, who isn't even on Facebook and who I am in touch with, is expecting her second baby). Do you ever have the experience of seeing or talking to someone from your past, someone you don't see or talk to much anymore, and ending up missing them a thousand times more than you did before you connected? That's how I felt this week: overjoyed and sad. The joy of friendship, the memories of heady times (college), the ache of knowing life goes on and people move out of one another's orbits. The next afternoon, I swore I saw one of the friends drive by in a minivan. She waved at me, I was sure it was her. We were neighbors. Our kids had grown up together. I knew I'd see her later that night. We'd meet at the corner and go for a walk, talk over all the details of each other's day. Part again saying, "Talk to you tomorrow." Of course, it wasn't her. But it felt like living another whole lifetime in a moment, and I ended up with tears in my eyes. Thank you, Source of All, for good friends.
Stand Up And Be Counted I filled out our census form yesterday, and it felt really strange. I was a little uncomfortable about putting the children onto the Great Big Radar Screen In The Sky. For years they've been our children; now they're also government data points. I know all the arguments in favor of filling out the census, and I did it! I did it! But it made me think of the ancient Hebrews' fear of being counted which Robert Alter talks about in his translation of the Pentateuch. I think some of that is left over in me. I'm sure there's a poem in this.
Peacefulness Update Do you wonder how my little peace project has been going? This week was a good week for peace. There were two parents around all week. That helped. The children weren't as naughty. That helped. And I tried hard to be in a peaceful place for myself, which (I hope) had the natural byproduct of sharing a little peace with others. I confess, I do have to try really hard to smile from dinnertime on. The pinched-looking mommy comes out in full force about that time of day. I have been wondering a lot if a fake smile is better than no smile. So far, I'm going with Yes.
Two Letters I received not one, but two, letters this week -- real letters, handwritten, on paper. You know, Snail Mail? One was from my dear auntie who told me family stories, the way certain names have made their way through our family over the years despite one generation not knowing it they had been family names in the past. The other letter was from my best childhood friend's mom, who wrote: I love you like one of my own. Do you want to make someone's day? Write them a letter.
Reader, that's my beer, books, eggs, marbles, wool. What's yours?
And this little story is a long-winded way of warning you that this post is nothing more than a random assortment of items. Beginning with:
What I'm Reading I just finished Denise Levertov's Selected Poems, and I am in love with them. When I came to the end of the last poem, I felt bereft. So I just started over at the beginning, and have been living all week with her beautiful words and images in my head. I read Denise Levertov several years ago, and I thought then that she was obviously a very smart, very good poet, technically strong and all that. But I didn't connect with her work on an emotional level, as I have now. The word that comes to mind when I think of her work is communion, in the sense of oneness or union. Her poems explore communion with others -- a husband, a son, a parent, all humanity; communion with nature; communion with God; even the uneasy communion of various selves within one person. About joy, she writes:
It is objective,
stands founded, a roofed gateway;
we cloud-wander
away from it, stumble
again towards it not seeing it,
enter cast-down, discover ourselves
'in joy' as 'in love.'
(From her poem "Joy")
I am three-quarters of the way through a re-read of Anna Karenina (Leo Tolstoy). I think I was in college the last time I read it. Through the years, Anna's adulterous and "glittering" eyes always stayed with me, and now I realize that there are a lot of glittering eyes in that book, not just Anna's. Again, I find that I am meeting this work on a new ground, one that as an innocent, unmarried, childless college student I could not have occupied. Whereas then I merely enjoyed it, now I am brokenhearted and exultant by turns. It's a great story, and Tolstoy's writing on the joys and heartaches of family life is stunning.
And, I've just begun a collection of poems by Alicia Ostriker called The Book of Seventy. I am paying close attention to the way she crafted these poems, to line and pacing in particular. I am interested in this because she, like me, uses punctuation sparsely. She uses it very sparsely. I like this in a poet. I think I can learn from her, and gain some confidence in using line, syntax, and rhythm to help pace a poem when punctuation marks seem like big bullies (! . ; !), as they so often do to me. Just for a taste, how about this line from "Family: Attempted Speech":
so family is a way of demonstrating
how incomplete we are while belonging to each other
What I Did on St. Patrick's Day I did not wear green. I did not drink beer. I did not cook or eat corned beef and cabbage. I did not sing "O Danny Boy." I started a new poetry class at my friendly neighborhood literary center (well, okay, it's Across The River as people say around here, but I'm still glad to have it within striking distance, if not in my actual neighborhood). It's the Deborah Keenan poetry class I mentioned in this post. Taking a class felt (and feels) like a big deal to me. For one, I'm shy in new groups. Also, the last time I took a class at this venue was before my health took a nose dive. So entering the doors felt like a milestone for me: Yes, I have the energy, the physical strength, the stamina to drive Across The River, park my car, walk into the building, find the classroom, and sit down ready to learn. Even eighteen months ago, this would not have been possible. A friend of mine who took the class a few years ago calls it "Poetry By Firehose." I left sopping wet and energized. And, as my Facebook status says: Molly is behind on housework, ahead on poems.
Weather Has Broken And my bones ache less. Hallelujah.
More Signs of Spring There is a crocus coming up in the front garden. The maintenance guys put the wind screens down at the baseball fields. The latter happened on Thursday when Sister and I were over at the high school complex taking a walk and getting some exercise (she wanted to do the long jump; who could say no to a 4yo who wants to try the long jump?). So, we (she) did the long jump, then we watched the maintenance crew put down the wind screens on the dugouts. But apparently, they should actually be called "parent screens" because the maintenance guy told me the real reason they installed them was to keep the players from being visible to the parents. This, apparently, discourages the parents from walking over to the dugout to give advice to their children during the game. That thought kind of wrecked my day for a few minutes.
In My Life, I've Loved Them All Say what you will about Facebook, but this week it brought me together (virtually speaking) with two dear friends from college that I probably wouldn't have connected with otherwise (it also delivered the happy news that a third friend, who isn't even on Facebook and who I am in touch with, is expecting her second baby). Do you ever have the experience of seeing or talking to someone from your past, someone you don't see or talk to much anymore, and ending up missing them a thousand times more than you did before you connected? That's how I felt this week: overjoyed and sad. The joy of friendship, the memories of heady times (college), the ache of knowing life goes on and people move out of one another's orbits. The next afternoon, I swore I saw one of the friends drive by in a minivan. She waved at me, I was sure it was her. We were neighbors. Our kids had grown up together. I knew I'd see her later that night. We'd meet at the corner and go for a walk, talk over all the details of each other's day. Part again saying, "Talk to you tomorrow." Of course, it wasn't her. But it felt like living another whole lifetime in a moment, and I ended up with tears in my eyes. Thank you, Source of All, for good friends.
Stand Up And Be Counted I filled out our census form yesterday, and it felt really strange. I was a little uncomfortable about putting the children onto the Great Big Radar Screen In The Sky. For years they've been our children; now they're also government data points. I know all the arguments in favor of filling out the census, and I did it! I did it! But it made me think of the ancient Hebrews' fear of being counted which Robert Alter talks about in his translation of the Pentateuch. I think some of that is left over in me. I'm sure there's a poem in this.
Peacefulness Update Do you wonder how my little peace project has been going? This week was a good week for peace. There were two parents around all week. That helped. The children weren't as naughty. That helped. And I tried hard to be in a peaceful place for myself, which (I hope) had the natural byproduct of sharing a little peace with others. I confess, I do have to try really hard to smile from dinnertime on. The pinched-looking mommy comes out in full force about that time of day. I have been wondering a lot if a fake smile is better than no smile. So far, I'm going with Yes.
Two Letters I received not one, but two, letters this week -- real letters, handwritten, on paper. You know, Snail Mail? One was from my dear auntie who told me family stories, the way certain names have made their way through our family over the years despite one generation not knowing it they had been family names in the past. The other letter was from my best childhood friend's mom, who wrote: I love you like one of my own. Do you want to make someone's day? Write them a letter.
Reader, that's my beer, books, eggs, marbles, wool. What's yours?
3.10.2010
On Rain and Pain: Impressions
Rain Poems
This week in and around South-of-the-River, we have rain. And so I am listening to the fall of the rain, its music, and thinking of the rain poems I know, like
794 by Emily Dickinson
"A Drop fell on the Apple Tree -
Another - on the Roof -
A Half a Dozen kissed the Eaves -
And made the Gables laugh -"
(whole poem here)
and
The Antiphon by Denise Levertov
"And then once more
all is eloquent - rain,"
(remainder of poem here if you scroll down)
and
April Rain Song by Langston Hughes
"Let the rain kiss you.
Let the rain beat upon your head with silver liquid drops.
Let the rain sing you a lullaby."
(whole poem here)
and Part I of
Gifts of Rain by Seamus Heaney
"Cloudburst and steady downpour now
for days
Still mammal,
straw-footed on the mud,
he begins to sense the weather
by his skin.
A nimble snout of flood
licks over stepping stones
and goes uprooting.
He fords
his life by sounding.
Soundings."
(whole poem here; sorry I can't find it anywhere online)
**
Rain, A Love Story, or, It's Complicated
I have always loved a good rainy day (or week, as the case is this week). Perhaps it is my Scottish and Irish blood that makes me feel at home in the rain. Plus, rain is reading weather. And rain sounds beautiful - like, what? Like hushed applause. Like silver, falling.
Since my arthritis set in, Rain and I have had more of an uneasy relationship. I still love it for all the things it is: water-ful and musical and good for cocooning. But since my arthritis set in, Rain (or any damp weather) and Pain have gone hand in hand. So I've been thinking about pain this week.
**
Fears
It is always a little scary to start telling people about pain. Oh, the fear of being The Complainer. The fear of myopia, of having lost perspective. The fear of coming off as if other people's suffering (physical or otherwise) is not just as bad or worse.
Here, I shove my fears aside. There are a few things I want to say about pain.
**
Pain, the Word
I've done a little research on pain. Just a very little, focused on what I care about: the word itself, where it came from, and what it really means.
pain n. 1. a strongly unpleasant bodily sensation such as is caused by illness or injury 2. mental suffering or distress (Oxford English Dictionary)
Since I began living with pain on a daily basis, I have often been puzzled about why there is just one word in English for pain. We use same the word to define physical discomfort and emotional suffering. Personally, I feel physical pain deserves its own damn word, but I guess I'm not in charge of the dictionary.
pain Borrowed from Old Friench peine from Latin poena punishment, penalty, from Greek poine punishment (Barnhart Concise Dictionary of Etymology)
The word pain comes from the words for punishment and penalty. Punishment and penalty are what happen to you when you do something wrong, illegal, or in violation of the social contract. It comes from words for things that are brought upon oneself. I don't necessarily think this connotation has held, but there's something in me that wants to grumble at the provenance of this word.
**
A Proposal
I think we need a new word. One for physical pain. One that tells of the way bones can drink in the weather and hold it in their very centers. A heavy-sounding word that carries a sense of weight; one that tells of the burden of simple things like walking or lifting a cup to one's mouth for a drink. One that says tire, tire, tire and throb, throb, throb, and one that has nothing to do with penalty or punishment, but instead speaks of burden, ache, ever-present physical force.
**
Lo These Many Years
My pain is daily pain. Believe me, I am keeping track of how long I have lived with daily pain. It will be nine years in September. Some days are worse than others. Some years are worse than others. Many days the pain feels manageable. When the damp weather comes, and especially when it stays, the pain intensifies and it doesn't feel manageable anymore.
Truth: Last night I cried myself to sleep. I am tired of hurting.
**
Note To Self
Never move to the Pacific Northwest.
Consider, perhaps, Northern California.
**
Getting Used to It
Once I thought there would come a day when I would wake up pain-free. I haven't exactly given up on that idea, but I have stopped thinking about it and waiting for it. If it happens, it happens. If not, not.
Once I told my mom, "Don't worry about me, Mom. I'm used to being in pain."
And she said, "I don't want you to get used to it."
I love her for saying that.
**
A Prayer
Please let the Resurrection of the Body be symbolic.
**
Redemption
Sometimes when the pain is bad, I try hard to name the gifts of pain, to make it seem redemptive. Things like:
--I am closer to the earth. I sense the weather inside my skin. I can tell you when the front moves in, what time the rain or snow started. I can tell you before I get out of bed in the morning if it has stopped yet.
--I learned to slow down, quite literally. I have sometimes enjoyed a slower pace of life.
--I have an excuse for wearing really comfortable (but not very fashionable) clothes -- ones with few fasteners.
--Ditto for shoes. I live in my Danskos 'til summer. Then I live in my Birkenstocks (BTW, I know of someone who calls Birkenstocks "Birth Control" and I think we can all see why).
--I learned to ask for help. I have learned to accept help. From friends and strangers alike.
--My kids have learned to do things for themselves, and for me, that they might not otherwise have learned by now.
--I hope my kids have also learned compassion and understanding for others' struggles, seen and unseen.
--I have a very good excuse for limiting (severely) my volunteer hours at school.
--I get to take lots of hot baths.
--I am lucky to live in a time when there are medications and other remedies to ease chronic pain.
--By the time I am an old woman, I will have had lots of practice being an old woman.
But here's the truth: I haven't found that thought or idea or experience that makes pain, especially pain that is with me every day, seem redemptive. Yes, I have learned a lot from having a chronic illness. Yes, my life is probably better for the experience of chronic illness, for the friendships I have gained, and even those I have shed, because of the way illness has coursed through my life; and for the gratitude that seems to flow naturally out of hardship. But my life is harder, too (I have just recently been able to admit this to myself, so I am practicing by saying it and writing it: My life is harder than it would be otherwise because of my illness). So, gifts of illness in general? Yes. Gifts of bodily pain that lasts and lasts? Not so much.
**
Pain Poem
I have some notes scribbled down on pain, notes for a poem. The line that keeps coming to me is
pain is the bones chanting
do not forget us, we are very near
I have spent a lot of time wondering if this line is a reassurance or a threat.
**
Redemption, Again
I guess that little line might have just a speck of redemption in it. If nothing else, my daily pain has kept me close to my body, my physical self. It has kept me from being too much in my mind or in my feelings, as I think I was prone to be during the years when I took a pain-free, well-functioning body for granted. It makes me think that while we can't be defined wholly by our physical selves, still there is something about the physical vessel which our soul/self walks around in.
I don't know what that something is, besides being something more to learn.
2.24.2010
The First Week of Peace
Last week in this post I wrote about my plans to make Spreading Peace my Lenten observance this year. Here's what I can say one week into the endeavor:
--Focusing on peace has helped me to feel more peaceful (I haven't taken any polls on how others under our roof have experienced the past week). Taking a moment to breathe deeply and to remind myself, I am bringing peace to this moment, has helped a great deal. Whether managing an obstructionist 4 year old, or slamming on my brakes behind the person who is texting while driving and just cut me off on the expressway, I have found that I can be more patient and forgiving if I just focus. As usual, it seems when we try to do something good for the world, we end up doing something good for ourselves.
--Getting enough sleep has made a huge difference. File this under Things Molly Has Had to Learn Over and Over and Over Again. For the first several weeks of this calendar year, I was getting up very early (4:30) in order to carve out some writing time. The result was a tired, crabby mommy with a few mediocre poems. As I turned my attention to peace for Lent, I knew I had to recommit to getting enough rest. I have the luxury of getting at least eight hours most nights, and it feels wonderful. And, of course, I am less crabby and more patient because I am well-rested.
--A little advance work in the household planning department goes a long way (re: where to file this, see above). My own personal downfall is meal planning and grocery shopping. I hate doing it, so I tend to put it off until we're out of...... well.... everything. The result: stressful afternoons trying to pull together Something Decent for dinner; no milk for breakfast; no fruit in the fruit bowl; you know the drill. With a little more planning ahead, our afternoons have been less stressful and our larder more stocked. Peace-o-meter on the rise. (Important note to caregivers of children age 3 years and under: This bit does not apply to you. If you have children 3 and under in your house, plan all you want while the gods laugh. And laugh. And laugh.).
--Being honest about my needs has made me feel more peaceful. Carving out time to write during the daylight hours. Asking Husband for a night off in the kitchen. Asking the kids for a little peace and quiet (which, I know, is like asking a waterfall to stop flowing...... but sometimes even thirty seconds of peace and quiet while one tries to explain one's need for peace and quiet is enough).
--I have yelled less. Yahoo.
--I have started thinking about other things - things outside the realm of under-my-own-roof - that could make the world a more peaceful place. In particular, I have been thinking about how hard it is to feel peaceful when you are under-nourished. Because of the way my chronic illness affects my body's ability to absorb nutrition, I actually know what that feels like. I'll tell you something: when you're not getting enough nutrition you never feel quite safe or secure; it's easy to lose hope; and your brain doesn't work very well. Also, there is no light in your eyes (which is a corollary to: It's easy to lose hope). I wonder how much more peaceful the world would be if everyone had enough to eat? So, in my effort to spread more peace I'm going to be sending $10 more per month to our local food shelf. It's just a little something, but it's something.
Peace to you.
--Focusing on peace has helped me to feel more peaceful (I haven't taken any polls on how others under our roof have experienced the past week). Taking a moment to breathe deeply and to remind myself, I am bringing peace to this moment, has helped a great deal. Whether managing an obstructionist 4 year old, or slamming on my brakes behind the person who is texting while driving and just cut me off on the expressway, I have found that I can be more patient and forgiving if I just focus. As usual, it seems when we try to do something good for the world, we end up doing something good for ourselves.
--Getting enough sleep has made a huge difference. File this under Things Molly Has Had to Learn Over and Over and Over Again. For the first several weeks of this calendar year, I was getting up very early (4:30) in order to carve out some writing time. The result was a tired, crabby mommy with a few mediocre poems. As I turned my attention to peace for Lent, I knew I had to recommit to getting enough rest. I have the luxury of getting at least eight hours most nights, and it feels wonderful. And, of course, I am less crabby and more patient because I am well-rested.
--A little advance work in the household planning department goes a long way (re: where to file this, see above). My own personal downfall is meal planning and grocery shopping. I hate doing it, so I tend to put it off until we're out of...... well.... everything. The result: stressful afternoons trying to pull together Something Decent for dinner; no milk for breakfast; no fruit in the fruit bowl; you know the drill. With a little more planning ahead, our afternoons have been less stressful and our larder more stocked. Peace-o-meter on the rise. (Important note to caregivers of children age 3 years and under: This bit does not apply to you. If you have children 3 and under in your house, plan all you want while the gods laugh. And laugh. And laugh.).
--Being honest about my needs has made me feel more peaceful. Carving out time to write during the daylight hours. Asking Husband for a night off in the kitchen. Asking the kids for a little peace and quiet (which, I know, is like asking a waterfall to stop flowing...... but sometimes even thirty seconds of peace and quiet while one tries to explain one's need for peace and quiet is enough).
--I have yelled less. Yahoo.
--I have started thinking about other things - things outside the realm of under-my-own-roof - that could make the world a more peaceful place. In particular, I have been thinking about how hard it is to feel peaceful when you are under-nourished. Because of the way my chronic illness affects my body's ability to absorb nutrition, I actually know what that feels like. I'll tell you something: when you're not getting enough nutrition you never feel quite safe or secure; it's easy to lose hope; and your brain doesn't work very well. Also, there is no light in your eyes (which is a corollary to: It's easy to lose hope). I wonder how much more peaceful the world would be if everyone had enough to eat? So, in my effort to spread more peace I'm going to be sending $10 more per month to our local food shelf. It's just a little something, but it's something.
Peace to you.
10.07.2009
This Is For The Record
I guess if I'm going to dance around it from time to time, and then complain about having to convince someone I need a disability parking tag, I should probably attempt to describe the nature of my chronic illness for those who don't already know. I have been avoiding this post for some time for several reasons. One is that I don't want to seem like a bore. We all know people who tell us all about every minor ailment, medical test, and brush with pain they have ever experienced. I don't want to be that person. Another reason is that the nature of my illness is not all that easy to explain (or at least it doesn't seem easy to me) because I don't quite fit into any one disease category. There is the issue of where to start and end when telling the story of a chronic illness. Then there is the fear of sounding like a complainer. And there's the feeling that I should be able to tell this story in a spellbinding and delightful way, being that I am a writer, when really I feel creatively dead when I start to think about it. But if you will humor me, and keep in mind all my disclaimers and insecurities, I'm going to try to get this out of the way here and now.
I have an autoimmune condition. Autoimmune disease happens when the immune system (which is the system that fights off illness and infection for your body) misfires, and begins to attack healthy tissue. There are all kinds of autoimmune conditions from hyperthyroiditis to diabetes to lupus to rheumatoid arthritis. Autoimmune conditions occur primarily in women (the ratio is 9:1 compared to their incidence in men). Scientists do not know what causes autoimmune conditions to develop, although there does seem to be some genetic influence. Pregnancy, illness, and stress are also considered possible triggers. The likeliest explanation for their onset seems to be a combination of genetic predisposition and other factors. Autoimmune diseases tend to flare (become more active) and then go back to what doctors call "baseline" disease activity, which is different for everyone. While the symptoms of autoimmune disease can be treated with varying levels of effectiveness, there is no cure for any autoimmune condition, although it sometimes does go into remission in some patients.
My experience with autoimmune disease began when I was a child, with joint pain and photosensitivity (sensitivity to the sun). It was pretty well-managed, and I had a long remission until I was in my mid-twenties. The remission was so long that I never really thought of it as a remission, and it didn't occur to me that the "blip" of illness I experienced when I was in 4th grade would ever again be a factor in my life.
I guess I knew it might again become a factor when Husband and I first tried to start a family, and didn't have very good luck (infertility is very common in patients with autoimmune disease). With the help of doctors, we then had amazing and miraculous luck and have our three lovelies to show for it! During my first two pregnancies I always felt wonderful, but after delivery was another story. After each of the boys was born, my joint pain and fatigue returned with a vengeance. There also seemed to be a component that affected my digestive tract, and I lost a lot of weight. After a while, my symptoms were stabilized under the care of a rheumatologist. I also found that I felt much better and was able to gain weight on a gluten-free diet, so I have been gluten-free since 2003. Although I had difficult stretches, with pain and fatigue as my regular companions, I look back to that time now and think I wasn't too bad back then.
It was during my third pregnancy, in 2005, that my disease worsened considerably. Starting about halfway through that pregnancy, I developed severe joint pain, swelling, and stiffness. I remember that it seemed to happen literally overnight: one day I was quite fine, the next day my hands and feet were practically frozen stiff. The fatigue became debilitating, and I struggled to gain weight. The remainder of that pregnancy was difficult, but we (me, Husband, doctors, family, friends) all thought my troubles would be over after I delivered the baby (who ended up being Sister). We were wrong.
I have seen many doctors, including many doctors at the nearby World Famous Medical Clinic (which I will refrain from naming, since I have mostly gripes and laments about my experiences there). I don't have a hard and fast diagnosis beyond what the World Famous Medical Clinic's rheumatology docs say is "severe inflammatory arthritis with a mild lupus suggestion." When my illness comes up in conversation with people I don't know very well, or don't feel like explaining all the gory details to, I say I have rheumatoid arthritis. It covers my basic symptoms, and it is something with which most people have some familiarity. There never has been a clear explanation for my weight loss/digestive tract issues. Over the last several months, we have landed on a medication that seems to work better than others had before. My pain and stiffness (which are primarily in my hands, feet, shoulders and hips) and fatigue are better-managed, and my weight is up. I still experience flares from time to time. I need to know and respect my limits. But I'm glad to be more stable now.
I began the journey of serious illness in a state of bewilderment: a true lack of understanding and wild confusion over what could be happening and why. Then there was some denial: I think, for example, that it took a few years for me to understand that this is not going away, and this is not something I can fight, or overcome with a positive attitude, or treat with herbal supplements. There was an anger phase. I am not completely done with that. There was the mourning phase - the goodbyes I had to say to certain abilities and hobbies and dreams (not to mention a dear little Cape Cod, white with black shutters, in Highland). I am not completely done with that, either. I think now I am mostly on the stretch of the journey called Learning to Live With It. Someday, maybe I will reach the promised land of Acceptance.
I must say how crucial the support and help from my family, and all our wonderful friends and neighbors, has been throughout the years of my illness. Because of them, I know what it feels like to have one's life saved. My life was not snatched from the grips of death in a flash, but has been tended and preserved lovingly, and piece-by-piece, by so many caring people, gestures, words.
There are about a hundred pieces I could write on the challenges of illness, and a hundred more I could write on the gifts of illness. The punch line of each piece would be this: that, despite the difficulties and the pain and the fatigue and the anger and the goodbyes and the limits, I have a really good life. Life can be unpredictable, imperfect, and downright difficult. But every night, when I lay me down to sleep, I am overflowing with gratitude for life's beauty and magnificence.
[Okay - there - I've done it!]
I have an autoimmune condition. Autoimmune disease happens when the immune system (which is the system that fights off illness and infection for your body) misfires, and begins to attack healthy tissue. There are all kinds of autoimmune conditions from hyperthyroiditis to diabetes to lupus to rheumatoid arthritis. Autoimmune conditions occur primarily in women (the ratio is 9:1 compared to their incidence in men). Scientists do not know what causes autoimmune conditions to develop, although there does seem to be some genetic influence. Pregnancy, illness, and stress are also considered possible triggers. The likeliest explanation for their onset seems to be a combination of genetic predisposition and other factors. Autoimmune diseases tend to flare (become more active) and then go back to what doctors call "baseline" disease activity, which is different for everyone. While the symptoms of autoimmune disease can be treated with varying levels of effectiveness, there is no cure for any autoimmune condition, although it sometimes does go into remission in some patients.
My experience with autoimmune disease began when I was a child, with joint pain and photosensitivity (sensitivity to the sun). It was pretty well-managed, and I had a long remission until I was in my mid-twenties. The remission was so long that I never really thought of it as a remission, and it didn't occur to me that the "blip" of illness I experienced when I was in 4th grade would ever again be a factor in my life.
I guess I knew it might again become a factor when Husband and I first tried to start a family, and didn't have very good luck (infertility is very common in patients with autoimmune disease). With the help of doctors, we then had amazing and miraculous luck and have our three lovelies to show for it! During my first two pregnancies I always felt wonderful, but after delivery was another story. After each of the boys was born, my joint pain and fatigue returned with a vengeance. There also seemed to be a component that affected my digestive tract, and I lost a lot of weight. After a while, my symptoms were stabilized under the care of a rheumatologist. I also found that I felt much better and was able to gain weight on a gluten-free diet, so I have been gluten-free since 2003. Although I had difficult stretches, with pain and fatigue as my regular companions, I look back to that time now and think I wasn't too bad back then.
It was during my third pregnancy, in 2005, that my disease worsened considerably. Starting about halfway through that pregnancy, I developed severe joint pain, swelling, and stiffness. I remember that it seemed to happen literally overnight: one day I was quite fine, the next day my hands and feet were practically frozen stiff. The fatigue became debilitating, and I struggled to gain weight. The remainder of that pregnancy was difficult, but we (me, Husband, doctors, family, friends) all thought my troubles would be over after I delivered the baby (who ended up being Sister). We were wrong.
I have seen many doctors, including many doctors at the nearby World Famous Medical Clinic (which I will refrain from naming, since I have mostly gripes and laments about my experiences there). I don't have a hard and fast diagnosis beyond what the World Famous Medical Clinic's rheumatology docs say is "severe inflammatory arthritis with a mild lupus suggestion." When my illness comes up in conversation with people I don't know very well, or don't feel like explaining all the gory details to, I say I have rheumatoid arthritis. It covers my basic symptoms, and it is something with which most people have some familiarity. There never has been a clear explanation for my weight loss/digestive tract issues. Over the last several months, we have landed on a medication that seems to work better than others had before. My pain and stiffness (which are primarily in my hands, feet, shoulders and hips) and fatigue are better-managed, and my weight is up. I still experience flares from time to time. I need to know and respect my limits. But I'm glad to be more stable now.
I began the journey of serious illness in a state of bewilderment: a true lack of understanding and wild confusion over what could be happening and why. Then there was some denial: I think, for example, that it took a few years for me to understand that this is not going away, and this is not something I can fight, or overcome with a positive attitude, or treat with herbal supplements. There was an anger phase. I am not completely done with that. There was the mourning phase - the goodbyes I had to say to certain abilities and hobbies and dreams (not to mention a dear little Cape Cod, white with black shutters, in Highland). I am not completely done with that, either. I think now I am mostly on the stretch of the journey called Learning to Live With It. Someday, maybe I will reach the promised land of Acceptance.
I must say how crucial the support and help from my family, and all our wonderful friends and neighbors, has been throughout the years of my illness. Because of them, I know what it feels like to have one's life saved. My life was not snatched from the grips of death in a flash, but has been tended and preserved lovingly, and piece-by-piece, by so many caring people, gestures, words.
There are about a hundred pieces I could write on the challenges of illness, and a hundred more I could write on the gifts of illness. The punch line of each piece would be this: that, despite the difficulties and the pain and the fatigue and the anger and the goodbyes and the limits, I have a really good life. Life can be unpredictable, imperfect, and downright difficult. But every night, when I lay me down to sleep, I am overflowing with gratitude for life's beauty and magnificence.
[Okay - there - I've done it!]
9.28.2009
I Get By With a Little Help From My Friends
Well, with a lot of help from my friends, actually.
Thanks to all of you who, through the comments section, or in other ways, buoyed me up after my run-in with Nurse Skeptical about the disability tag. If I was looking for a silver lining, I found plenty with a little help from my friends. In case you missed them:
--Gretchen's reminder that having helpful and supportive parents, and a mother who was persistent enough to keep encouraging me to get a disability tag in the first place, is indeed a silver lining.
--CitricSugar's wisdom that if even one person can learn something about chronic illness, or about not taking everyday abilities for granted, through my story, "then you've got more of a silver lining than you thought."
--Ms. W-K's reminder that my silver lining is having the strength to tell my story. It has always been my hope that, if I began to write about my experience of illness, it would benefit others who might be experiencing something similar, or who might someday.
Then, there was another of my favorites from my friend, The Poet A.O.D. She said, "A pox on them all!"
So, thank you everyone (those mentioned here and many others) for your friendship, compassion, support, and medieval curses. You are all definitely one big huge enormous glittering silver lining in my life.
And here's another one: that, in having a chronic illness, I get to learn a lot of really interesting and important life lessons. Sometimes (okay, a lot of times) I even get to learn them more than once. After thinking about my conversation with Nurse Skeptical, it dawned on me that I didn't have to argue with her about that parking tag. I didn't have to convince her of anything. I could have referred her to the accompanying cover letter. I could've said, "I'll discuss this with the doctor myself." I could've said, "If you don't feel comfortable filling out the form, would you please pass it on to the doctor?"
One does not have to convince anyone of anything; one just has to live one's own authentic life.
It's a lesson I've learned before. It's something I've accepted on an intellectual level, but obviously, have not integrated into what I think of as the Wisdom Level of knowing something: the level of knowing whereby something is integrated into the way I live my life, my approach to every day. So, I guess I can think of Nurse Skeptical as a silver lining in and of herself: she pushed me a little further down the path of wisdom. I'd call back to thank her, but........... nah.
So, I think that's at least six silver linings altogether. Sometimes it just takes a little time. And a little help from my friends.
Thanks to all of you who, through the comments section, or in other ways, buoyed me up after my run-in with Nurse Skeptical about the disability tag. If I was looking for a silver lining, I found plenty with a little help from my friends. In case you missed them:
--Gretchen's reminder that having helpful and supportive parents, and a mother who was persistent enough to keep encouraging me to get a disability tag in the first place, is indeed a silver lining.
--CitricSugar's wisdom that if even one person can learn something about chronic illness, or about not taking everyday abilities for granted, through my story, "then you've got more of a silver lining than you thought."
--Ms. W-K's reminder that my silver lining is having the strength to tell my story. It has always been my hope that, if I began to write about my experience of illness, it would benefit others who might be experiencing something similar, or who might someday.
Then, there was another of my favorites from my friend, The Poet A.O.D. She said, "A pox on them all!"
So, thank you everyone (those mentioned here and many others) for your friendship, compassion, support, and medieval curses. You are all definitely one big huge enormous glittering silver lining in my life.
And here's another one: that, in having a chronic illness, I get to learn a lot of really interesting and important life lessons. Sometimes (okay, a lot of times) I even get to learn them more than once. After thinking about my conversation with Nurse Skeptical, it dawned on me that I didn't have to argue with her about that parking tag. I didn't have to convince her of anything. I could have referred her to the accompanying cover letter. I could've said, "I'll discuss this with the doctor myself." I could've said, "If you don't feel comfortable filling out the form, would you please pass it on to the doctor?"
One does not have to convince anyone of anything; one just has to live one's own authentic life.
It's a lesson I've learned before. It's something I've accepted on an intellectual level, but obviously, have not integrated into what I think of as the Wisdom Level of knowing something: the level of knowing whereby something is integrated into the way I live my life, my approach to every day. So, I guess I can think of Nurse Skeptical as a silver lining in and of herself: she pushed me a little further down the path of wisdom. I'd call back to thank her, but........... nah.
So, I think that's at least six silver linings altogether. Sometimes it just takes a little time. And a little help from my friends.
9.25.2009
"But That's Not a Disability"
I just had the most frustrating conversation with someone at my doctor's office. I had sent the paperwork to renew my disabled parking tag, which I use because my arthritis makes it difficult for me to walk long distances (and sometimes even short distances), especially when there are children and a bag of groceries involved. It took me several years of being ill before I finally gave in an applied for one. My mom finally convinced me, and thank goodness -- because now, that tag is the difference between me being able to stop and grab a gallon on milk and a bag of apples on my way home, or being able to take the kids to the doctor by myself, or being able to mail something from the post office, and not.
Anyway, the nurse called and asked, "But what's your disability?" I replied, quoting my rheumatologist, "Severe inflammatory arthritis" (this was also explained in the cover letter I sent to accompany the application, but apparently she did not read that).
And she said, "But that's not a disability."
Huh?
Obviously, she doesn't have severe inflammatory arthritis.
So, I then had to begin my campaign of convincing the nurse at my own doctor's office that I did, indeed, need a disabled parking tag. And I was really mad! I mean really mad! And I'm sure there was an edge in my voice when, in answer to her question, "Well, do you fall down a lot or something?" I said, "Well, do I fall a lot? No. I don't fall a lot. But I can be walking, and my hip will freeze up. And then I can't move. So, if I'm in the middle of the parking lot, and my hip freezes up, will I fall? Maybe not. But I might have to sit down and hope that my hip unfreezes. Meanwhile, if I have my three-year old with me, it's a problem." Well, she said, "Do you walk with a cane?" "No," I said, "but when I'm really bad, I either don't go out or I don't walk at all -- my husband drops me off at the door and then pushes me in a wheel chair." So went the conversation, back and forth, back and forth. After a while she said, "Look, Ma'am, I'm just trying to fill the form out here." And I said, "And I'm not trying to be difficult, but I need this tag and I don't want to have to convince you of that."
I don't really like having to use a disabled tag. I don't like it at all. I don't like the Raised Eyebrows and Looks I get from people who look at me and think I am cheating the system by having a disabled tag, because unless you look closely for my slowish, half-limping gait, you might look at me and think I am perfectly healthy. I wish I could sprint and do cartwheels through the parking lot while juggling my kids in the air behind my back. But the truth is, I can't, and I need that tag to make my illness manageable, my life more livable.
After we hung up, I felt like crying. Sometimes I get really tired of constantly having to convince, argue, fight, and advocate for myself because I have a chronic illness. Sometimes I feel like not a week goes by when I am not trying to convince someone -- a doctor, a nurse, an appointment secretary, an insurance company representative -- to give me what I need to feel as well as possible. And I guess I wish I could handle situations like this with perfect calm, without ever getting frustrated, without an edge in my voice. But, what can I say? So far, I can't.
And today, Reader, I can't even come up with a silver lining for this cloudy story. Because today it's damp and rainy and I'm sore, and I used my disabled parking tag when I stopped at the co-op to pick-up my special order bread. And I needed it, I really, really did.
Anyway, the nurse called and asked, "But what's your disability?" I replied, quoting my rheumatologist, "Severe inflammatory arthritis" (this was also explained in the cover letter I sent to accompany the application, but apparently she did not read that).
And she said, "But that's not a disability."
Huh?
Obviously, she doesn't have severe inflammatory arthritis.
So, I then had to begin my campaign of convincing the nurse at my own doctor's office that I did, indeed, need a disabled parking tag. And I was really mad! I mean really mad! And I'm sure there was an edge in my voice when, in answer to her question, "Well, do you fall down a lot or something?" I said, "Well, do I fall a lot? No. I don't fall a lot. But I can be walking, and my hip will freeze up. And then I can't move. So, if I'm in the middle of the parking lot, and my hip freezes up, will I fall? Maybe not. But I might have to sit down and hope that my hip unfreezes. Meanwhile, if I have my three-year old with me, it's a problem." Well, she said, "Do you walk with a cane?" "No," I said, "but when I'm really bad, I either don't go out or I don't walk at all -- my husband drops me off at the door and then pushes me in a wheel chair." So went the conversation, back and forth, back and forth. After a while she said, "Look, Ma'am, I'm just trying to fill the form out here." And I said, "And I'm not trying to be difficult, but I need this tag and I don't want to have to convince you of that."
I don't really like having to use a disabled tag. I don't like it at all. I don't like the Raised Eyebrows and Looks I get from people who look at me and think I am cheating the system by having a disabled tag, because unless you look closely for my slowish, half-limping gait, you might look at me and think I am perfectly healthy. I wish I could sprint and do cartwheels through the parking lot while juggling my kids in the air behind my back. But the truth is, I can't, and I need that tag to make my illness manageable, my life more livable.
After we hung up, I felt like crying. Sometimes I get really tired of constantly having to convince, argue, fight, and advocate for myself because I have a chronic illness. Sometimes I feel like not a week goes by when I am not trying to convince someone -- a doctor, a nurse, an appointment secretary, an insurance company representative -- to give me what I need to feel as well as possible. And I guess I wish I could handle situations like this with perfect calm, without ever getting frustrated, without an edge in my voice. But, what can I say? So far, I can't.
And today, Reader, I can't even come up with a silver lining for this cloudy story. Because today it's damp and rainy and I'm sore, and I used my disabled parking tag when I stopped at the co-op to pick-up my special order bread. And I needed it, I really, really did.
5.27.2009
Things Do Not Always Go According to Plan
I have been walking around for the past day and a half muttering the words, "Let go, goon!"
Let me explain.
When Husband and I were first married, I had one of those page-a-day calendars with an illustration and a quote for each day. There was one that I had torn out and taped to the refrigerator. On that page was a person at a crossroads. There was a directional sign. One arrow pointed ahead and was labeled: "The rest of your life." One arrow pointed back the way the person had come; it read: "No longer an option." At the bottom of the drawing, in all caps, it said: "LET GO GO ON". But the spacing was such that, if you glanced at it quickly, it sometimes looked like "LET GO GOON." So Husband and I began saying that to each other when one or the other of us was frustrated about something we had no control over. Since then, "Let go, goon!" has been an oft-uttered phrase around our house.
**
I had a plan for yesterday. It was the last day of preschool, my last day to myself, I kept thinking, until the summer babysitters are available in a few weeks. I was planning to do some writing. I was planning to run to the post office and mail a package to my mom. I was planning to stop at the fabric store and get a button for my tan pants. I was planning to write a few thank-you notes. I was planning to order groceries.
Sister woke up with a fever and an earache. There went my plan.
No problem, I thought. New plan. Drop AJ at school, then go to the doctor with Sister and be back to pick up AJ. Order groceries while they nap.
No appointments 'til noon. New plan. Leave AJ at school for the afternoon, forget the groceries - go pick up a roasted chicken for dinner, take Sister to the doc, pick up the prescriptions, then pick up AJ. Be back in time for a quick nap, then go get The Bean from the bus stop.
No roasted chickens. None? None. AJ's school calling: he's not feeling well, could I come get him earlier? Prescriptions not ready yet. Half-an-hour wait. New plan. Go get AJ now, then pick up prescriptions. Quick rest. Then get The Bean. Defrost a meatloaf for dinner.
Prescriptions still not ready. Ten minute wait. New plan. Wait for prescriptions. Call M. to see if she can pick The Bean up from the bus stop. Try to keep people from falling asleep in the car (including myself). Hope Sister and AJ will rest once we're finally home..... if we ever actually get home........
So went my day. And I found myself getting really out of sorts because things were not going according to plan. Nothing huge or insurmountable, just a hundred little changes to how I thought my day would unfold. And I didn't like it at all.
Then I heard those three little words in the back of my mind, "Let go, goon!" and I started wondering: Why is it still so hard for me to embrace the fact that things do not always proceed according to plan? I mean, I know this already! Some relatively major things have not gone according to plan in my life. Living 650 miles away from home and family? Wasn't in the plan. Developing a debilitating chronic illness? Wasn't in the plan. If I know from my own life's journey that plans are an illusion, why is it so hard when day-to-day things don't go the way I think they will, or the way I want them to?
**
I read something last week, a quote by Francois Fenelon, who said:
"There is only one way to love God: to take not a single step without him, and to follow with a brave heart wherever he leads."
Somehow, this advice seems easier to apply to the big things in life: cross-country moves, serious illnesses, and the like. I've been able to rise to the challenge for those big things. I've tried to be brave, strong, enduring, and peaceful amidst difficulty and disappointment. But what if I applied this advice to life's smaller disappointments? What if all the hundred little things that don't go according to plan each day, each week, each month, are not just minor disappointments but are also another step down one's spiritual path, are also part of the call to one's true life? It's something I've been thinking about a lot for the past 24 hours.
Until I puzzle it out a little more, "Let go, goon!" will have to do.
4.28.2009
Fragile
frag-ile [frag-uhl]adjective
1. easily broken, shattered, or damaged; delicate; brittle; frail
2. vulnerably delicate, as in appearance: she has a fragile beauty
3. lacking in substance or force; flimsy
from the Latin frangere “to break”
**
I have been feeling fragile lately. On Easter Sunday I came down with what I thought was a little cold, and ended up being a stubborn case of bronchitis. I was in bed for several days, and on the couch for several more. Now after two rounds of antibiotics and steroids, I have turned the corner and have begun to look back, with discomfort and a little bit of fear, at how sick I became, and how quickly. And it makes me feel fragile.
Prior to contracting bronchitis, I had had one of my best stretches of good health (or as good as my health gets) in quite a long time. My joint pain was better-managed, I had gained several much-needed pounds, and my energy level was better than it had been in years. Now I am back to tiring easily; I lost most of my hard-earned weight; and I have been unable to take my arthritis medication because it suppresses my immune system and must not be used when infection is present. I feel sad and discouraged and a little bit scared about how quickly my gains became losses again.
Life changes quickly. Sometimes in the blink of an eye. You can be healthy, and then suddenly not healthy. You can be employed, and then suddenly not employed. You can be alive, and then suddenly not alive. And yet, much of the time we are all just fine and get along quite well without help, free of hardship, not facing tragedy. I was very sick, but now I am quite a bit better thanks to modern medicine and help from family and friends. What does this mean for us as human beings? How are we to embrace our simultaneous fragility and resilience?
I am not sure I know the answer, but I think I have learned (again, and again, and again) to see fragility as a gift. During my bout with bronchitis I needed a lot of help. Friends brought meals, did laundry, and helped get the kids to and from school; Dave came home early, fixed dinner, did baths and bedtime; other friends ran errands, brought groceries, took the kids to the playground; the children unloaded the dishwasher, put away laundry, brought me blankets and cups of juice. Without all the help, delivered with care and concern, I might have broken - might have been sicker for longer, might have felt alone and helpless, might have experienced the down-side of fragility. Instead, I experienced its up-side: I felt the love and care of my friends and family; I rested and let my body heal; I gave thanks for my life, my doctor, modern medicine, central heating, thick blankets, good books, and hot tea.
**
There is a flat of pansies on the garden table outside my kitchen window. They are beautiful, but fragile: “vulnerably delicate, as in appearance,” “easily broken, shattered, or damaged.” Slender, bobbing stems struggle to hold up brave, gorgeous, paper-thin faces. They will need care: rich soil, water, enough light, a little food now and then. If it gets too cold, they will need to be covered. They could be crushed by a basketball, or a frisbee, a foot, or a hailstorm. But they probably will endure until first frost ~ and beautifully.
I would like to be fragile the way these pansies are fragile: fragile in this beautiful, interdependent way. The way that we are all fragile, really.
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