Getting in the way

Illness doesn’t like to be ignored.

It waits until you’re going about your business, feeling reasonably well and enjoying your busy life, and then it pops up to wave hello, just to make sure you remember who’s really boss. It doesn’t want you getting too comfortable.

Take last week, for instance. I had a (minor, and I’m fine) pulmonary embolism. A clot that had formed in my heart after surgery migrated into my lungs, very briefly blocking the flow of oxygen. I got lightheaded and short of breath, my vision narrowed and my lips turned blue. (Staring into the mirror at your own face turning blue is an interesting experience.) On my own in my apartment at the time, I held on to the wall and made my way down the hall to the bedroom.

Now, I love living on my own – being a neat freak when I want to be and a slob when I’m tired; showering with the bathroom door open; eating odd things at odd hours. But sometimes, when something like this happens, I feel like this is another thing chronic illness wants to wrestle me for.

I’m completely fine now. I lay down for five minutes and felt much better, then went to my doctor. But I was scared, and as I lay in bed sweating buckets and trying to take deep breaths, I was also annoyed. “Come on,” I thought. “I don’t want a roommate!”

I think we all know that feeling of having some part of our ordinary selves threatened by illness. It’s not just my living arrangements. Sometimes it’s my job or my social life, or my workout or even my evening plans. Maybe some of you have set aside favourite hobbies or daily walks.

It feels, sometimes, like something’s chipping away at the things that make me me. It’s disappointing and it’s scary, and what’s to be done?  

I’ll make adjustments, but I won’t change who I am. And I am a person who likes her space.  

I think that’s one of the greatest challenges of living with chronic illness – much easier, I think, for those of us who have lived with it our whole lives than it must be for people who are suddenly confronted with a life-changing diagnosis. Sometimes it’s a struggle to find ways to be ourselves with bodies that seem entirely uncooperative. But it’s necessary and important to do so; to understand the things that are meaningful to us and to shape our lives to accommodate them. These things might not look the same – I’ve got a doctor on speed-dial now and a neighbour who’s said she’ll be there if I need her – but they’re ours.

That’s what matters.