One of the more difficult things to deal with about being this ill is the feeling of uselessness imposed by my physical limits. Even as long as I’ve been ill, I’ve never quite gotten over the guilt of not being able to do what feels like “my share” anymore.
I grew up with a pretty strongly feminist streak, and in envisioning my life as an adult, I anticipated having an awesome career, maybe getting married, and that if I did, it would be to someone as feminist as I was; someone who would want us both to contribute equally to our household. Dividing our obligations that way seemed like the only fair way to operate, and fairness – as a reflection of equality – was enormously important to me.
When Chimp and I said “I do” in 2001, we wrote not only our own vows, but our own fairly non-traditional ceremony. We didn’t include the words “in sickness and in health.” Chimp had been dealing with ankylosing spondylitis since his teens; I had watched him get out of bed like an old man for years already. I thought I knew who was going to be the sickness and who the health.
My losing the ability to contribute financially and physically happened at the same time. At the end of 2007, after several months of insomnia, I had a crash at Christmastime from which I’ve never recovered. I was struggling just to get back and forth from bed to the couch, and I said to Chimp, “I can’t go back to work in January. I don’t want to stop, but I can’t physically do it anymore. It’s over. It has to be.” I remember the panic written on his face, the hopeful assurances that maybe if I took a week or two off, that I’d bounce back, that it’d happened that way before. But that crash turned out to be the one we’d worried about coming.
Since then, having to deal with needing much more care than a normal adult human, in combination with that old fairness streak, means I constantly have to resist feeling like a drag, a burden, and an obligation.
Feeling that way is pretty much all me, though. Since I became bedridden in 2007, both my mother and Chimp have stepped up in a way that I know has been an incredible challenge for them. I don’t expect that either of them thought that in my thirties they would be helping me get baths and bringing me my meals on a tray. But if it’s a challenge for them, it’s not something they’ve ever made me feel bad about.
The degree to which they’ve stepped up is somehow exactly what I would have expected of them. Not “expected of them” in the sense that I feel I was owed it by any means, but in that it’s a perfect reflection of their compassion and loving natures. There are so many things that I’ve had to rely on them for in the last few years, and it’s been both a humbling experience and an ongoing lesson in gratitude.
Because of how much I have to have done for me and that fairness streak, I try never to take any of it for granted. From sunup to sundown, I’m constantly thanking Chimp for things. For going for groceries and prescriptions, for cooking, bringing me lunch, each of the dozen steps in helping me get a bath, filling up my water pitcher again and again, fetching things from hither and putting them thither and vice versa. For bringing me dinner, cleaning up the kitchen, doing laundry, changing sheets, tending the garden, fetching my pill cups, filling up my pill boxes at the start of the week. In thanking him, I make a point to stop what I’m doing, smile and look him in the eye each time. It seems totally insufficient in return for all he does, but it doesn’t cost me anything, and it feels like the least I can do for all he does for me.
And one of Chimp’s best qualities is that when I say I feel guilty about all of this, he never makes me feel like I should; he always says he’s not keeping score, that he’s never kept score in our relationship, that that’s not what our relationship is about to him. I deeply appreciate it, and I don’t know if I could have managed to do the same if the situation were reversed. Would that sense of fairness I was carrying around have turned into a streak of resentment, if the tables were turned?
In return for all he does, I do try to do absolutely as much as I can to help within my abilities. I don’t have great physical stamina, but one thing I do have in abundance is free time. So I plan our menu for the week, keep my bathroom and bedroom neat, order things we need online, do the garden planning and some of the easy planting and harvesting when I can, take charge of sending greeting cards and choosing birthday gifts, and have spent the last three years gradually making the house our own with a small budget spent on ebay and Craigslist.
When I write that out it doesn’t seem like much.
But Chimp knows all this, knows that I do all that I can, and that I constantly wish I could do more. The other night, as we were having our usual bedtime hangout and cat playtime, I said to him, “I wish I could work.” He didn’t reply. What is there to say to that, really? He knows what I mean by this shorthand. He knows all about my sense of fairness, and he knows what it continues to mean to me. That I wish I wasn’t so dependent. That I wish I could make my own money. That I wish I could go out into the world. And he knows I couldn’t so much as get up in the morning, take a shower and dress myself for work, and I’ll probably never be able to again.
“I know,” I said, after a moment of silence between us. “I should just be grateful I’m still here. I am grateful I’m still here.”
“I’m grateful you are too. And if someone had told me everything we’d go through, I would do it all again to be with you.”
And all these years after I married him, that’s what I’m most grateful for.