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.
Showing posts with label may is arthritis month. Show all posts
Showing posts with label may is arthritis month. Show all posts
5.19.2010
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.
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