Tag Archives: anger

Mean living

I get angry then I get mean. It tastes bitter and I try to keep it in but I can’t. Then it’s too late and I’ve ruined something.

A reputation, a conversation, a relationship, an evening. A family.

The thing that made me angry and then mean is gone, but I am left alone with my meanness.

Nobody wants to be around someone who is mean, not even me. But I can’t get away from myself.

I am lonely and I want to be around other people but I am afraid of what I will do to them. If this time will be the time that I go too far. That I break a heart or burn a bridge too completely.

Being mean is the part I have feared the most. They told me that lots of people with HD aren’t mean. They told me that just because my mother was mean doesn’t doom me to meanness. They told me that my true, kind nature would be exaggerated.

They were wrong. And now I’m mad at them too because I bought into their wishful thinking.

Every time it happens, it is harder to bounce back. Every time it happens, I feel less of myself left.

I think back to when I was twenty-something and I laughed and jumped from rooftop to rooftop with my friends in our platform shoes.

That girl can’t ever come back, and I miss her.




Goodbye, irritation. Hello, rage.

My experience with HD holds that I no longer have irritations, grouchiness or impatience. I go straight to rage. It is always the same flavor. The same intensity. The same heat. No matter what lit the fuse. No matter how insignificant I recognize the slight to be. No matter how wrongly I know I’ve blamed someone. No matter how much I know I don’t have any reason to be angry.

There it is.

It is more common by far in the evenings. In fact, I am vigilant to avoid situations that might trigger slight irritations in other, regular people after 5 p.m. This is when I take my mood stabilizer. The heavy dose. This is when I stay away from people and social media. And when I can’t, I take the three tranquilizer pills that I have historically saved for bedtime. I have been taking them earlier and earlier.

Because something always sets me off.

Notice I am not saying some ONE.

That’s because I know that the rage I am suppressing and channeling and grinding through my teeth has no rightful home with anyone else.

Growing up and too far into adulthood, I was a rage receptacle for my HD-stricken mother.

It’s always been my greatest fear that with the progression of the disease, my anger will hurt people I love. My husband suggests that things might not play out that way. I used to be pretty easy-going.

But that doesn’t explain why I now have to be vigilant every single night.

I have my back against the front door and I’m trying to keep out a terrible villain.

If I strain harder and harder to keep this part of me at bay, some part of me will eventually prolapse and it will burst onto the scene–uninvited and unwanted.

And that will really piss me off.


Are the masks off? YES! YES! YES!!!!

And I have seen their faces.

I saw the “Huntington’s Disease Project: Removing the Mask” in a limited screening. I don’t want to reveal too much about the contents of the movie, because I don’t want to spoil anything for anyone. But let me assure you that the film powerfully accomplishes what it set out to do. The movie’s mission is to raise global awareness of Huntington’s disease, dispel incorrect information and bring to light taboo subjects, like suicide, atypical sexual behavior, and financial ruin.

Not only were the masks removed. Souls were laid bare and the hardest, most painful truths were told.

And it tore my heart to pieces.

People all over the world described how their lives have been infiltrated by HD in the worst ways, ways I already knew about but didn’t want to hear. But I couldn’t stop listening. My own pain was described with exquisite perfection and I felt as if every story was mine. I was transfixed.

So I think this documentary will blow the minds of people who have never heard of, or who have incomplete knowledge of Huntington’s disease. I think it is a movie that “normal” people, after seeing it, will tell each other about. I also know it is something that those of us with HD will want our friends, relatives, and coworkers to watch, so they’ll “get it.”

I’m sorry to say that due to rules and restrictions for entries into film festivals, you probably won’t be able to view the film until 2016. But it’s July already. And this is a film that should be considered for every possible award. The filmmaker and his team tried and tried for so long to make the film, and the final product, I suspect, was more profound than any of them expected.

I was in shock for a good while after I saw the movie. But it was by no means a bad feeling. It was the unreal feeling that someone finally got it right and told our truth.

And now it can never be untold.

The masks are off for good.