My Brain AVM Story: Feeling Loss

If you’ve been reading what I’ve written about my brain AVM surgery, stroke and subsequent disability even a little bit, I hope that you’ve picked up that I try to stay as positive about it all as I can. Just because my life turned out differently than I planned doesn’t necessarily mean that it’s going to be worse. And I believe right to my bones that if it does turn out to be worse, it’s not going be because I’ve become a person who’s living with disabilities.

A Sense of Loss

But sometimes it will hit that there’s something from my pre-stroke life that I really like to do that’s going to be very difficult in my post-stroke life, and there’s a sadness that I can’t deny. I feel my avm story arteriovenous malformationaround babies.  There’s no physical reason why I can’t have a baby – except that when it’s born, how would I pick it up? How would I hold it? How on earth would I take care of a baby using one hand?

It’s why I play with babies when they’re in a high chair or playpen, or when I can get right down on the floor with them. I don’t need to worry about having to pick them up.

It’s not just big life transitions like having a baby that bring on that periodic, unexpected sadness.

Sudden and Intense

A couple of months after I’d returned home after stroke rehabilitation, I went to the high school to see the Drama Club perform their Spring play. I used my cane. The school had built a new theatre since I’d graduated, and I’d not seen it yet. When the play was over, and everyone had left, I walked  up onto the stage and wandered around it, getting a feel for it. I’d been really active in the Drama Club when I was in high school. I’d loved the theatre, and I’d loved to perform.

A teacher from the high school who hadn’t seen me since I’d come home came onstage to say hello. We exchanged pleasantries and made some small talk, and then I suddenly started to cry. I was embarrassed, and I apologized.

“But I miss being onstage,” I said. “And I can only think of one play that has a character with a disability in it.” (“The Glass Menagerie”; I’m sure there are more, but the point was that I suddenly saw myself as being really limited in what I could do onstage. In that moment, that perceived reality was just…heart-breaking.)

Dealing with It

I don’t necessarily feel that way anymore. I know that I won’t be doing dance numbers in musicals, but it’s more the strict rehearsal schedule that keeps me from trying out for community theatre than anything else. I don’t see why a director couldn’t cast a person with a disability even if the script doesn’t say that the character is disabled.

But that’s not really the point. The point is that sometimes, no matter how hard I try to stay positive, sadness about the way things have changed comes up and needs to be dealt with. It’s less and less often, and my coping strategies are better than they used to be. I’m grateful for these things.

I’m grateful that there’s lots to be happy with in life, that these losses feel less overwhelming as time passes.

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