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.