Same Song, Different Stanza

When my mom died in May from Huntington's Disease, I hoped that was the end of it for our family. HD is a genetic disease, caused by a dominant gene. If you have the gene, you get the disease, and now that there's a test, people who are at risk have the option of finding out if they too will suffer the same fate as their parent.

My brother tested negative about a year ago, which means his children are not at risk for the disease. And I tested negative on September 28, 1999, eight years ago.

My mom's older sister, at 69, has shown no signs of the disease, nor did her brother, who died in his sixties.

That left my mom's little sister, my aunt. We're close in age, more like sisters than aunt and niece. As kids, we used to read in bed with flashlights and peppermint sticks, giggling until we fell asleep. I ripped my pajamas climbing over the cyclone fence in our backyard when she led me on a midnight escapade. We once spent a whole afternoon sitting on the washer and dryer in her house, singing hymns at the top of our lungs: "Softly and tenderly Jesus is calling!"

She was my mentor growing up, the arbiter of what was cool. I remember in sixth grade wanting to mimic her curly artist's handwriting. I practiced for months, making my A's fat and my S's sharp. I carefully wrote the lyrics to "Killer Queen" over and over, and then "Young Americans", until I had them memorized and could sing along with the albums she'd loaned me. I rode in the backseat of her boyfriend's Monza, trying to inhale when they passed me the joint, my throat burning. She even taught me how to pick the right mushrooms—yeah, those mushrooms.

Thanks to her hip influence, I wasn't quite as nerdy as I would have been on my own. I had a secret stash of cool, like our peppermint sticks, ready to whip out whenever Young Americans came on the radio. "Gee my life's a funny thing, am I still too young?"

We've stayed close, over the years. When I found out I was moving here, I had no idea what I'd do with my mom, who by then was living in a nursing home near my house. But my youngest aunt, on hearing the news, only hesitated a beat before saying "Bring her here. I'll take care of her."

On Friday, the other shoe dropped in our genetic minefield. My aunt found out she's the next one in our family to have Huntington's Disease. We can't "draw a line under it", as they say here, with finality, whenever something has run its course. What in most people is an insignificant gene on the fourth chromosome, in my mom, my grandmother, and now my Aunt Pam, codes for a misbehaving protein that picks off neurons one by one until it's destroyed whole sections of the brain.

I've learned a lot about Huntington's over the years, but I haven't learned how to fix that stupid gene. I used to envy my aunt's genes, that gave her that thick dark hair, her inch-long eyelashes, her olive skin. But a genetic makeup can hide cruel secrets, as my aunt found out on Friday, the eighth anniversary of my own game of genetic roulette.

Huntington's is often referred to as a "dance", because of the chorea, the dance-like involuntary movements that accompany its onset. But right now, I'm thinking it feels more like the same song, different stanza.

Comments

[Katharine]

I'm so sorry, Kathy, that Pam has the Huntington's gene. Stem cell research truly must be allowed to be conducted at full bore.

[KathyR]

Shit. I'm sorry to hear that. That's awful.

[John]

I'm very sorry to hear about that your aunt is apt to face the miseries of Huntington's Disease. I echo Katherine's sentiments; every effort must be made to take advantage of science in seeking a cure, a way to stop the disease in its tracks, and/or a way to slow its progress to a crawl.

[Kath]

Oh man. So very very sorry for you and Pam and your families.

[Mary Osborn]

Such a cruel cruel disease. You are in my thoughts!

[Diane]

I'm really sorry, Kathy. I know how terrible you must feel about this news.

[Gina Spadafori]

Oh darlin' ... I'm so sorry.

[KathyF]

Thanks to all of you for your kind words. I will pass them along to her. She doesn't have internet for the time being.

[bazu]

Oh my goodness, how horrible. I don't know much about Huntington's, I just hope that your aunt has many good years left. It's horrible how these genetic diseases run through families and cause such unnecessary sadness. Please give her my best.

[muffintop]

What a sad discovery. Love to Pam. And blessings (ooh, too religious?) to you for being an excellent niece.

[emma]

My mum also has huntington's. So did my auntie and she died in 2006. Their mum also had it and she died when she was 37.

[KathyF]

Emma, I'm so sorry to hear that. My best wishes to you and your family.

[auntie pam]

I just got a chance to read this post. I can't belive you thought I'd be mad it made me cry but in a good way.
you always know just what to say.

love pam

[KathyF]

Glad you are back online. Sending cyberhugs your way. {{{}}}}