Burning down

A lot of my doctors remember that I was applying to medical school before I got sick. I think this is funny, but I suppose my story is strange enough to be memorable. When I saw my surgeon to discuss my upcoming surgeries, he asked if I was still planning to go.

“I would never survive medical school,” I said casually. I briefly described how I anaphylax when overtired, that stress is dangerous for me, that sometimes I sleep through entire days.

“I think you’d be fine. Never say never,” he replied.

Inside, I was shaking my head. I want to go to medical school. I think I would do well in medical school. But this disease is such a constant unknown. I can’t predict what it will do, and all I can do is try to live around it. I don’t know that I can justify going to med school when four very stressful weeks could disable me permanently. Even more than I’m already disabled, I mean.

Then there are the more practical concerns. Like how I almost never drive anymore. If I drive somewhere, there is always the chance that I will react and need IV meds that make me unable to drive. When that happens, I need someone to come get me and drive my car home. I also can’t take pain medication if I need to drive. And also, it irritates my hips. So I would need to find someone to drive me.

And that most basic adult life skill: waking up to an alarm. Can’t do that either. I have a deaf alarm clock that shakes the bed and two other alarm clocks. They don’t wake me. I have to be woken up by my parents every morning, which is really humiliating. Every time I fall asleep, I’m afraid I won’t wake up in time to do whatever I need to do the next day.

There are more things, of course. There are dozens of things I can’t do by myself anymore. I can’t lift things. I need help to make my bed. If I’m in pain, I can’t walk my dogs. I sometimes can’t take out my trash. When I had a PICC line, it took me forever to do dishes in a way that didn’t soak my dressing and if I covered my site, it made it harder for me to use that hand functionally. Cleaning is really time consuming because I’m allergic to dust. And so on.

I can’t remember when I started losing my independence. It feels like there should be a moment, a specific point in time I can point to. There isn’t. It must have started slow and progressed that way for a while, the change so gradual it didn’t draw attention. And then one day I realized that I was dependent upon other people to execute basic functions of my life. And there was nothing I could do about it. It was like my house was burning down and I didn’t realize even though I was living in it.

Now I am dealing with the reality of again being completely dependent on others for several weeks of my life while undergoing and recovering from my surgeries. This time, I am doing it with the added complication of living alone. After my last bowel surgery, I couldn’t be alone for almost three weeks. I couldn’t lift anything. I couldn’t stand long enough to cook anything. I was at increased risk of anaphylaxis. I am fortunate to have many friends and relatives who signed up to babysit and care for me during that time. I am grateful to the people who cared for me then, but the complete lack of privacy and personal space during that time was one of the hardest parts of my recovery.

It is not lost on me how closely my current situation mirrors the lead up to my ostomy surgery, and how badly things went afterward looms heavily in my mind. Both personally – needing to move out of my apartment very quickly, my longterm relationship ending – but also physically. I wasn’t supposed to have obstructions after the ostomy. I did. The ostomy helped, but the reality that I still had so many problems was difficult. I know I need these surgeries, but I am preparing for the disappointment when new complications arise. And I would venture that the disappointment is harder than the physical recovery.

The last few weeks have been really stressful on pretty much all fronts. I’m taking this weekend to figure out a way to address that, as what I’m doing now is not sustainable.

I can’t be everything I want to be all the time. Sometimes I can’t even be a functioning adult for myself.