In the film “Phenomenon,” John Travolta’s character was suddenly able to do amazing things with his brain. Turns out it was because he had brain cancer and (spoiler alert) he died. The end.

Yesterday I had a moment of clarity that reminded me of that film. I wasn’t doing math problems or anything like that. I realized, and as of yet I can’t un-realize, that I have already been seriously screwing with and screwing up the lives of people I love.

I had been projecting into the future my fears of what my family and friends would have to endure as the HD gnawed away at my brain. But the show started without my consent or knowledge. I realized that I’ve been participating in antics, complaints, neuroses, and paranoia. I’ve been demanding, unreasonable and impossible for years already, without even considering that this might be the case.

The people who care about me and have to deal with me on a daily basis have already been royally screwed by my HD. Inasmuch as I complain about every dying cell, I’ve already totally wiped out these people’s last shot at normalcy.

And this happened years ago and here I am today just giving it lip service.

This is another occasion where I am simply stunned by how I can’t know something that is so close to me. That was created by me.

The only thing I can do is to try to fight harder. To consider the implications of what I say and do. You’d think I’d have done a bit of that already…

I may have remembered this before and forgotten it, so there’s that, too.

I wish that I could will my family to forget all of the pain they’ve endured so far, with the ease and certainty with which I forget appointments.

Barring that, I have to tell you, my family and friends, who I see now, for this instant, that you’ve been through a worse hell than me. And the ride is just beginning.

And I am so sorry because I love you the most.


4 thoughts on “Phenomenon

  1. Your insight and ability to articulate it is amazing. If were writing about anything other than your HD, I would not ever guess that you had HD. Thank you again for sharing.

    Liked by 1 person

  2. Reblogged this on The Huntington's Chronicles and commented:
    I am a huge fan of Sarah’s writing on Huntington’s Disease and Me. This piece really touched me, as it’s an issue that has caused conflict in my own family. Who suffers more: those with HD or those living beside someone with HD? There’s no right answer, folks! We all suffer, in our own way and our own hell. Sarah’s view is so painfully real here, though I imagine those who love her may see it differently. We all walk a hard road with HD.

    Liked by 1 person

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