Friday, October 1, 2010


Hi, I'm Star. And I could already be dying.

I wish that I could laugh now and say that I'm joking. I'm not.

My grandmother, on my mother's side, had a disease called Huntington's. You may or may not have heard of it. It's a degenerative brain disease. It usually starts out with involuntary movements and leads to dementia and ultimately death. There isn't a really decent treatment. There is no cure.

If your parent has it, you have a 50% chance of having it as well.

My grandmother had it. She died from it. My uncle currently has it. And my mom? Well, we don't know for sure. She seems ok. But who knows if she is or not? She tends to repeat stories - is that a degeneration of her brain, or just a normal "people who are getting older repeat shit a lot" thing? When she talks about insomnia, is it a sleep disorder like the ones commonly attributed to Huntington's? Or is it just because we've had some really stressful shit in our family this year?

So I'm currently in a Schrodinger's Cat situation. Until my mother is diagnosed or I'm tested, I both do and don't have Huntington's. And as I get older, this terrifies me.

You see, I watched my grandmother degenerate with Huntington's. She didn't recognize us. She was utterly unable to take care of herself. She couldn't dress herself, or go to the bathroom on her own. She would get into her adult diapers and smear fecal matter all over her room. She would randomly yell at us. She would call us names.

And we were young, my sister and me. And while looking back on it now, I realize how heartbreaking it was, and how scared and confused she probably was, my young self was bitter. Or embarrassed. Or one of 800,000 other negative emotions that shame me terribly now.

And I'm so scared.

Huntington's generally begins between 35-44. You have maybe 20 years after that. And most of those really aren't wonderful years. They're years where you lose your mind, lose your bodily functions.

Lose yourself.

I'm 28 years old. I'm almost 29. That gives me, if I am carrying this disease, a scant 6 years of having full hold of myself.

And it's not just losing myself that I worry about.

Remember how I told you how I felt about my grandmother? Yes, I'm ashamed of it now. Totally. However, those memories are so strong that I have a hard time remembering my grandmother any other way. Her as a demented, dying woman has colored everything about her in my mind.

If this happens to me - if I have this disease - is this how Shane and the kids will remember me? That is my worst fear. Being a burden to my family. I don't want Rhi, or Keira, or Shane to remember me as the crazy bitch who painted the walls with poop, or the woman who came in with her clothing inside out and only one fake boob in to their party. If I were to die, I would want them to remember the good things I did. But if I have Huntington's, is that even possible?

I'm sure right now you're all thinking, "Jeez, Star. Get tested. Then you're not unsure. And you can cope."

Here's the issue with that. Again, if I do have Huntington's, I will get demented and die. The end. There are no other paths in my choose your own adventure. So why find out? Why have that hanging, daily, over my head for what could be my last good decade?

Also, it's hard to get tested. Because Huntington's is a death sentence, you must go through psychological testing. It can be very lengthy. And expensive. Remember how I'm a broke college student/part time peer counselor?

And what the fuck difference will it make? If I get the test, and I'm positive, it's not like I'm Queen Latifah in the Last Holiday. I can't suddenly pack up everything and travel the world, see all the things I'll miss out on later. Can't go follow my dreams all crazily. Not like there's a Make a Wish foundation for low income moms.

And I don't trust myself. I don't trust myself to take knowledge of impending death and use it wisely. I'm worried that I'd use it to justify selfishness. Or that I'd wallow in self pity. If I'm gonna go nuts and die, I don't want that to happen. I don't want to be that person. But I can't say for sure that I wouldn't succumb to that. :/


Atina said...

Please keep in mind that everyone is going to kick the bucket, and not everyone knows what is going to happen towards the end. At least you know what could happen, and who knows what sort of therapy could be available by then. All you can do is keep yourself up to date on the information with the disease.

Just because you can't afford the ideal bucket list doesn't mean that you can't experience everything that is possible close. Make a list of the small things you want to remember, that you want the GIRLS to remember. Take pictures/videos, make sure you can hand them ways to remember the Star that you are, not the possible crazy(ier) Star that could be.

Pancreatic cancer runs in Shawn's family which is horrific. Yet, even knowing that I wouldn't change having both girls and allowing them to experience life in general.

Jess said...

Here is the way I see it. You do and don't have Huntington's. You will and you won't get hit by a car tomorrow. You will and you won't have a freak aneurysm next week. You see? Anything can happen. Not that it makes anything easier, or makes any other which way to go better or worse than another.

If you do have it, Shane and the girls will have memories of what you were 'before'. They (the girls) will be old enough to know to some degree what happened. They won't love you any less, and their memories of you will not be tainted.

I definitely know where you are coming from on not needing to know. Even so, try not to fret too much. I need my lactivist Schroedinger's cat in top form!

Summer said...

You poor gal. It must be so rough to have it hanging over your head of the is or isn't it, but I agree with you that what will it do to change anything if you know? It is a terrible thing to be in the middle of. *hugs on that*

I worry about being in a wheelchair by 40. It is a very real threat, and I don't want my kids remembering me as the woman who couldn't play with them , or made things difficult on them, and don't want Drew having to take care of that sort of situation, but it is what it is. Soldier on and hope to fight it off.

And not to be that annoying silver lining girl, but the day is still young in that, if this ever becomes a reality for you, chances are much greater that there will be help, or even cures in the future.

And no matter what, your children will have awesome memories of you because you are in fact, full to the brim with awesome.