Category Archives: forgetting

Uh Oh

I feel anxious.

I am making too many mistakes at my part time, work from home job, and I fear that the quality of my work overall is going downhill. I know that some of it has.

Maybe I’m just burned out.

I can’t apply “everyone makes mistakes” to myself because I don’t know where the line is between normal imperfection and cognitive malfunction.

I am scared that the people I do work for will get tired of dealing with all of the mistakes and will sever our relationship. That would make me very sad. I enjoy working with them.

This is the only part of my life that HD had not permeated. Everyone, everywhere, knows I have it, except for these people, because I just thought it would be nice to have a little pocket of normal.

But that pocket is being turned inside-out by my own questions and self-doubt.

Maybe I should tell them. At least they would realize that I can’t help the negligence.

Maybe they have googled me and read this blog, and we are keeping the secret from each other, to protect each other.

The sad fact is that, as I continue to work, the quality of my work will get poorer and poorer until I will have to stop. Unless I get an infusion of some sort of cure, that is definitely what is happening to my brain. It is tearing itself apart, or, rather, gumming itself together.

The other day, I went to my neurologist and after an hour of me telling him everything that was wrong with me, he concluded that I did not have chorea and thus implied that his work was done. He is a really nice guy, and I kind of wish that he had taken the time to validate the non-chorea deterioration I reported to him. Set aside the professionalism for a minute and say, you’re getting worse and it sucks. Maybe it is just too difficult for him to do that.

To wade in someone else’s pain.

For now I think I will take a day off from work and see if I bounce back.

It is no fun being scared about what you might not be able to do.

Especially if it is something you love.

 

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Phenomenon

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.

We and HD: face-to-face with HD peers

Nobody nearby has HD and so there are no HD support groups in my neck of the woods. Luckily, there is a fantastic network of HD support on Facebook. Some of the most important people in my life are people I have never met.

This past weekend, I got the chance to meet a few of them.

At the WeHaveAFace.org’s First Annual Walk for HD and JHD, I was able to get face-to-face with other people who have HD. I also got to meet some Facebook friends in person!

I was nearly overwhelmed at the Orlando airport. I was going down the escalator, when (beside all these men in suits holding dry-erase boards to get the attention of their parties) I saw James Valvano smiling, wearing his WeHaveAFace T-Shirt! We hugged for so long that I could feel people around us staring. Maybe some of them thought that we hadn’t seen each other for a long, long time.

I guess they were right. Never is pretty long.

For several hours after our meeting, I had some cognitive dissonance where James was concerned. I kept checking to verify that James was not a flat picture that spoke in print. He is indeed a real live person who uses words. And he also has HD. I didn’t know what to expect, because James accomplishes so much, but HD affects him too. He has developed ingenious workarounds for the roadblocks HD throws at him. But that is his story to tell. I’ll just finish by saying that the live version of James is very, very cool. And his family captured my heart.

The next day at the walk, I met my Facebook friend Cindy and her family. I don’t remember any of their names, but they were so nice to me and helped me do things that my fine motor skills wouldn’t allow me to do, like tie strings around balloons and tape down tablecloths in the wind. I couldn’t make a decision about what to do about putting the tablecloths on, and suddenly, people were there to help me.

I missed my husband a lot at that moment, because at home he is the one who comes behind me and tucks the sheets in all the way. I was comforted by the notion that these very compassionate people were there because they love other people battling HD.

I talked to other people with HD that day, but I can’t remember any of their names or what we talked about. Such is the nature of my disease.

I do remember that some of their struggles were clearly different than mine. I saw them walking, eschewing wheelchairs for the hands of loved ones.

I saw them happily living life out loud. And then I realized that I was, too!