Tag Archives: depression

How Halloween Charms the Grizzly Bear out of H.D.

… Step, stagger, speak, slur. Fog, fugue, forget, fret.

Step, stagger, speak, slur. Fog, fugue, forget, fret.

Step, stagger, speak, slur. Fog, fugue, forget, fret.

But suddenly:

Bell’s Palsy, ear PAIN!

Bell’s Palsy, ear PAIN, trigeminal NEURALGIA!

(Pain meds.)

Ear pain, trigeminal neuralgia, pain meds.

Ear pain.

And as a result:

Complain, expect, insist, subsist.

Lazy, crazy, hazy, home.

Bemoan, deride inside.

But tonight:

1000 zombie children come.

Swarming, wanting, fearing, thanking.

Adorable, inescapable.

Temporary cure for all the above.




Closer to fine

After a few dicey days

or maybe they were weeks

or maybe it was the whole summer

I see a bit of light.

If I follow it, I think it could help me escape from where I’ve been trapped, an emotional cage that has felt like the hot, dark trunk of a stranger’s car.

I’m taking the extra, discretionary pill. I’m doing the exercise. I am following suggestions.

And even though I forgot to wash out the conditioner, I took a shower.

As recently as last night, it could have gone either way. But I am feeling some clarity that I’ve missed for a long time and I’m holding on to it. I am thankful today to be alive and to be able to have another pass at enjoying life.

So many people I know have lost one or more family members to HD recently and there are also some families that are winding up for that final unraveling.

To the Valvano family and the other families who are preparing either to memorialize their loved ones, or to bear down and stay with them through the end, I have thought about you and prayed for you often. I’ve remembered you, even while in the trunk. My thoughts have often been about you and the love that you feel for your loved ones and about the love the HD community itself emanates.

And somehow, wanting to stretch my arms across the miles to hold you has helped bring me closer to fine. 


Greetings from oblivion

Bad people are doing mean things in the world.

I sense it only as a faint tugging at my heart.

A feeling of homesickness for a place that never existed.

I hurt like I have been pulled by an angry ocean wave.

I am dazed as if I’m riding a two-day hangover.

I want to see my friends.

I can’t talk to any of them.

I want to be alone.

There is none of me left.

So, even alone, I’m left with no one.

If a fleck of me flickers by, I’ll grab it.

And try to mold it into my game face before it dissipates.

Until then I will pile sleep upon itself.

Folding away the danger of being understood.

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.