The future is unwritten

I’ve been thinking a lot about two major topics, neither of which will come as a surprise: my husband’s cancer and my disability.

First, regarding my husband’s cancer, I got a helpful reality check from one of my online support groups. There are a number of people among the group who have the same type and stage of cancer as my husband. Like my husband, they had a long period of being free of disease, only to face recurrences. They’ve been in and out of NED status for up to 12 years and counting, in some cases.

That gave me a lot of hope that the recurrence he’s dealing with now is not necessarily a sign of immediate doom. You can probably imagine that I just let out my breath when I read that. Maybe he’ll still have many years left. They might be punctuated with sucky times on chemo but he may indeed still be around for a while.

The other thing I’ve been thinking about a lot is my disability, particularly in terms of what I expect of myself. In short, I still think I should be able to do just as much as I could before, even though I butt up against my limitations on a regular basis.

I was talking about it with my husband yesterday and he estimates that my capacity—or the number of “spoons” I have available on any given day—is only about a third of what I had in my mid-20s. Yes, I’ve really lost 2/3 of what I used to have.

I admit: that stopped me in my tracks. It just seemed so stark. But at the same time, I also couldn’t really debate him on that, either. I realized that he was most likely correct in his assessment of how much I’ve lost.

Yet I still haven’t adjusted my expectations of myself accordingly. In truth, I still believe that I should be able to do everything I could before. I set extremely unrealistic expectations for myself and then criticize myself harshly for being unable to meet them.

I still hear this voice in my head telling me that I’m just lazy. And I know where that comes from: my dad. He made several comments to me over the years (that I’m sure he didn’t realize would carry the weight that they did) suggesting that I was lazy. I could accomplish a lot more if only I managed my time better.

Was that ever fair or justified? Maybe it was at one time, though it wasn’t ever kind. I deeply internalized it anyway. But the fact of the matter is that my capabilities are severely diminished since then. I’ve been seriously in denial about admitting to myself just how limited my capacity is now.

I first started thinking about this in regards to my part-time job grading English/language arts test answers for 3rd-5th graders. The work is really pretty easy and I enjoy it for the most part. But there’s also the fact that doing this job absolutely kicks my ass. I don’t get to take evening naps anymore because of the hours I work and frankly, I’m suffering because of not getting those naps.

It makes me feel very prematurely old that I need those naps and in fact, can’t function well without them. But whatever I may feel about those naps doesn’t change the fact that I really do need them.

Maybe it’s time to start being kinder to myself. I need to respect what my actual needs are, instead of pretending I don’t have them. The fact is that I’m on disability for a reason (as shocked as I admittedly still am that I can’t just overcome this through force of will alone) and that I really am sick.

Healthy people can get through a full day without napping. I am not one of them. Healthy people also don’t have MRIs of their brains that look like mine, either. I really, really don’t want to believe I’m as limited as I am. But I am, whether I like it or not.

Maybe it’s time to start being my own little cheerleader, celebrating what I am actually able to do.

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