So yesterday was Thanksgiving and we had a nice day with my kids and their significant others (who are also inside our “bubble” and are known to be behaving with caution.) Yet I can’t help but feel this ominous sense like it might have been one of our last such occasions together, and I can’t figure out why I’m feeling this sense of foreboding.
Part of it might be a delayed reaction to my husband’s cancer. He survived and is cancer-free at the moment, which is obviously wonderful! But there’s always this sense in the back of my mind, this reminder of my aunt who beat cancer only for it to come back years later, and it feels almost like the tick-tock of a countdown. It’s also possible that I’m just feeling this ominous sense as a delayed reaction to his having had cancer in the first place, since I don’t feel like I ever really processed that.
But there’s also my health that’s giving me reason to worry. Ever since I met with the competent neurologist at UT Southwestern who confirmed my beliefs that I don’t have MS, I’m now taking it very seriously that I have something else instead. Whatever that “something else” is, it’s causing me to be overwhelmingly exhausted and I can’t get through most days without at least one nap. It’s also causing my pain in my legs from leg spasms, which muscle relaxers are no longer helping to relax.
I don’t know if I’m worried about my own death or just about the possibility of the losing my mobility. I do know that my leg pain has substantially increased in recent weeks and for the first time, I can see that losing my ability to walk is possible, maybe even probable. Much like my husband’s cancer, I don’t know how to emotionally process this, either. I spent the past seven years since my MS diagnosis in total denial that I would ever get that bad and assumed that I had complete control over whether or not I ever lost my mobility. Now I see the foolishness of that way of thinking.
Maybe I’m just depressed because I realize that I don’t have control over my own health. I mean, up to a certain point I do, in terms of eating well and exercising and all that kind of stuff that I have varying degrees of success at managing. But I feel the progressive nature of my disease creeping up on me and I’m aware that some things about it can’t be controlled. And it scares me a lot.
Not only does it scare me, it also makes me feel like I should have done more with my life while I was still healthy and had full mobility. It makes me feel like I should do more with my life *now*, since I am still mobile, even if in pain and constantly exhausted. I feel like I’m asking these questions like “what have I done with my life?” and “what do I have to show for my time here?” and I don’t like the answers. Yet I can’t get motivated to work harder toward any goals, despite feeling like I’ve wasted my life. (That apathy and lack of motivation may itself be associated with my disease.)
If I decline, will I be as aware as I am now of my own condition and how it’s deteriorated? I think that’s the hardest part: knowing that five years ago, I was much healthier and more mobile. I was much better able to push through the pain. I didn’t need the daily naps to function and muscle relaxers still worked for my leg pain. If I’ve seen this much of a decline in five years, what kind of shape will I be in five years from now?
I keep hoping for a miracle. Maybe my symptoms are caused by one or more of the medicines I take and maybe I could go back to normal if I could figure out which one and stop taking it. Maybe I could find something like one of the MLM health-and-fitness programs that would cure me of all symptoms. Maybe if I believe in miracles enough, I’ll get one. After all, it was largely my belief in miracles that kept me going through my husband’s cancer treatment, and for now, he appears to have gotten that miracle. The problem is that I’m too scared to believe in a miracle regarding my own health.
I want to be a fighter. I don’t want to be defined or limited by my disease. But I think that for the first time, I’m actually unable to deny that I actually have a disease. I literally can’t just push through it like I once did. So I have to find a new way to fight.