The year of choices being taken away

I have a feeling that I’m going to be different when I come through this year. Wiser but probably sadder. Because this is the year of choices being taken away, the year in which the old normal is blown to bits and we figure out how to create something new from its ashes.

Despite the fact that this may sound a bit melodramatic, it’s really not. I don’t feel sorry for myself, not really. Instead, it’s more like the largest tornado I ever saw was on a path toward my house. It’s not like you can stop it from coming or like it picked you in particular.

There’s no time to lament how things could have been different because the storm is already here either way. Now all I can do is hunker down, wait for the storm to blow through, and see how much damage it does. When it’s all over, I’ll start sifting through the rubble and see what’s left so I can rebuild.

It would be a lie to say I welcome this. I’d greatly prefer that my husband didn’t have cancer and that I didn’t have MS. But if it had to affect anyone, I suppose there’s no reason to think my husband and I should be exempt. He saw a young woman in her 20s with a toddler waiting at the oncologist yesterday, presumably there for a similar reason as he was. Now that’s sobering.

When you realize that this can happen to anyone–and in fact, does happen to people in arguably worse situations than yours–it’s harder to take it personally.

I’ve started to think that maybe when we make it through this year, I’m going to have a hell of a story to tell. Maybe that will be my book, about how we got through the year when my husband was diagnosed with stage 3 cancer and I was declared officially disabled with multiple sclerosis.

It’s not necessarily the story I ever wanted to write. But maybe it’s what I’m supposed to write. I think I will find hope and meaning in all this, mixed in with the fear and pain.

On a somewhat related note, I had a sobering realization yesterday. I decided to put grad school on hold for another year, figuring I wouldn’t be able to devote attention to it while caring for my husband and household while he fights cancer.

But then the thought occurred to me: can I really go back to grad school at all, ever? Is that even realistic?

I know, I’ve expressed similar thoughts here before. But given my determination to get through grad school because it was something I really wanted to do, I don’t think I ever believed that simply not being capable was even a possibility that crossed my mind.

At one point, I do believe I was at least quasi-intelligent. I always had hideous math skills so I was hardly the next Stephen Hawking, but I do think I used to have a pretty sharp mind. I was pretty good at learning and making analytical connections.

In some ways, I still have a sharp mind. The neuropsychologist’s exam proved that I still have amazing verbal skills. But I don’t have the follow-through or memory anymore like I once did. I don’t have the physical or mental stamina to sustain use of my verbal skills for any great length of time.

I’m only now really starting to come to terms with what it means that I got approved for disability. I didn’t even have to go to court to prove it. I am legitimately sick. Like, for real–my attorney told me that it’s actually not that easy to get disability in my district, statistically speaking, and that I should prepare for a long fight.

The fact that I didn’t have a long fight only seems to confirm what I already read in my neurologist’s notes and radiologist’s reports. Of course, my failed attempt to work last year was likely also on my side. Apparently my brain is (as one might say) actually pretty fucked up.

I knew I was in denial–to be honest, I’ve been fighting that since my initial diagnosis six years ago. But I don’t think I understood the extent of my denial.

My whole grad school plan was more of that denial. I thought that because the disease-modifying drugs were making my brain a little clearer, I could go back to being the hard-driven, academically achieving self I used to be.

I’m just now getting a glimpse that those days are really gone, no matter how much I don’t want them to be. I know I can get into grad school, but I also feel pretty sure that it would only be a matter of time until I crashed and burned. I mean, I only made it two months at a full-time job last year. Wanting to be capable does not mean I actually am.

It’s an understatement to say that I don’t like that. I’ve made a ton of progress in overcoming my control-freak tendencies over the years, but I still bristle strongly at the idea that there’s anything I can’t do. Those are fighting words for me. Tell me I can’t and I’ll do it just to prove you wrong.

Yesterday was the first time it really occurred to me, for real, that my future may be out of my hands. I may want to be the most inspirational, odds-beatingest disabled person ever, one who achieves more than most non-disabled person do. But just because that’s who I want to be doesn’t mean it’s who I can be.

That’s super hard for me. I’ve worked so hard to stop feeling sorry for myself in general. I’ve stopped blaming others and feel like I alone have control over my fate.

But multiple sclerosis is no respecter of what you want. Neither is colon cancer. It wouldn’t be called “fate” if you could control it.

That in itself is complicated. A lot of people have this whole “triumph of the human spirit” concept in which they expect people to overcome tremendous odds stacked against them. I wanted that to be me. Anything that tried to get in my way would just be an excuse I’d defeat.

But just like you can’t run a marathon with a broken leg, you can’t make your brain work right when you have multiple sclerosis. You can’t get rid of cancer if you just concentrate really hard.

Whether you believe in fate or God’s plan or that both of the above are bullshit, it remains a fact that no one can control life. We all work with what we have within the circumstances we’re given. Some people have much harder circumstances with bigger obstacles to overcome than we do.

Who am I to say how much we should be able to accomplish given our circumstances? Maybe being alive, getting up another day to fight again, is the best we can do. We’re getting into big-time “meaning of life” questions now. Maybe there is no meaning of life. Or maybe it’s just to find a sliver of happiness in whatever circumstances we face.

I never thought these would be my circumstances. I’m still honestly in shock about and trying to process the fact that my husband has cancer, let alone the fact that I am officially really disabled.

All I can do is sit through this, try to take things as they come, find some peace and joy in the present moment. Because I’m learning that control over the future is an illusion.

If you’re lucky, nothing bad ever happens to you. But it might. Then you get to level up to the challenge round of life and you have whole new battles to fight. Maybe leveling up is a sign that you can handle it and will become stronger. Or maybe all that’s bullshit, too. I guess we’ll find out.

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