My dad, Michael, suffers from Huntington's. He is fifty. He has been deployed as a military policeman multiple times and was stationed away from his family for years on end. He has PTSD and was blown up so many times during one tour in Iraq, that he has traumatic brain injuries, as well.
Many times people with Huntington's die from something frustratingly stupid, like a fall, or choking on food, because they have lost their balance or ability to swallow successfully. This disease is insidious. My father gave 20 years of his life to the US Army; he survived exploding IEDs, having a hit taken out on him by drug lords, and countless dangerous missions. I hate the idea that one day a hunk of steak could take down my Staff Sergeant MP father. It doesn't have the gravitas and the honor I feel he deserves.
Huntington's has snaked its way through my father's side of the family, spreading its venom up and down the family tree. His mother passed away due to a fall and Huntington's complications when he was in his very early twenties. I know of many aunts who suffered from it, and it probably dates back long before recent memory. The most recent victim of this wretched disease was my Aunt Liz, my dad's sister. She died over the Summer peacefully in her sleep from Huntington's at age fifty-two.
Of course, if you can stay alive long enough, Huntington's gets uglier the longer it progresses. The last years of someone's life often involve a wheelchair, a feeding tube, and an inability to speak or identify family members or friends. That, to me, is hell.
You're probably wondering why I am writing this. "Save me this sob story," you might be thinking, "there's already enough sadness in the world." I agree. I get it. It feels to me that, on both micro and macro levels, we are in the middle of a shit storm. So, in a world with a terrifying political climate, emotionally draining social media posts, and a mother nature hell-bent on revenge for her mistreatment over the last two centuries, why write a post about my dying father.
Last week, I received my results from my genetic testing at the University of Washington Medical Center. The process for testing takes months. It's laborious, and agonizing, and involves a lot of mental health check-ins. You have to attend three different appointments over a few months with genetic counselors, doctors, and nurses. There is a high risk of suicide as a result of a positive Huntington's status, so they try to prepare you as best as they can along the way. Positive, in this case, is actually the result with negative consequences.
Many people choose not to get tested. They don't want to know their 'status' until symptoms potentially arise down the road. I get that. I really, truly do. And if my fiance and I didn't see kids in our future, I probably wouldn't have gotten tested. But we do. In 47 days (woah), we will be married and we want to start a family.
There have been amazing advances since the discovery of the Huntington's gene in 1993 (before that you couldn't even get tested, so knowing your status prior to becoming symptomatic was impossible). Now, there are medications that can help with symptoms, there are many studies in the works to deactivate the gene, and they can do more with family planning. It is possible to do in-vitro fertilization using the sperm and eggs of you and your partner, test the resulting embryos for the gene, and only implant the embryos which test negative for Huntington's. They can even do that without informing the mother of her status. Since this is bound to be an emotionally and fiscally expensive endeavor, we did not want to do that if there was a chance we could just get pregnant the good, old-fashioned way with no risk of HD being passed on.
Bearing that in mind, I waited for my results with baited breath. My stomach was in knots all the time. I felt sick and nauseated and worried. My brain would keep me awake at night in an anxious whirlpool of thoughts. Usually my thoughts wouldn't be about the testing directly. That subject felt like looking into the sun. It was too much to take in and it hurt to look at it. So, instead, I would worry about boutonnieres for the groomsmen or about whether the house was clean.
I suffer from severe clinical depression and generalized anxiety disorder. Situations like this can cause many of my mental health symptoms which are usually under control through medication, diet and exercise, and regular therapy sessions, to rear their ugly heads. One symptom of my depression is forgetfulness and inability to hold things in my hand, stay balanced, or not run into things. I guess my brain is on overdrive and can't bother to worry about little things like what my body is doing. My anxiety usually makes me sick. It also causes panic attacks. Two days before I got my results I had a panic attack. I got hot and there was a buzzing in my ears and I couldn't breathe or think and the sounds around me were fuzzy, but too loud and I felt trapped. My therapist suggests maybe this is because this situation feels like there's no way out. I guess there's a reason she's my therapist.
As I waited for my results, I kept coming back to what I have dubbed 'The Sock Problem'. Back in seventh grade, there was a math problem about a sock drawer. We were studying probability and trying to determine how likely we were to match a pair of socks without looking, knowing the colors of the individual socks in the drawers. Honestly, as a student, this problem baffled me. How could I know the unknowable? Why wouldn't I just turn on the light and look at the colors of the socks? The logic of probability eluded me. In recent weeks, The Sock Problem has become more clear to me. I picture half of the socks are white and half are black. If I make a match, I'm sick, if I get mismatched socks, I'm healthy. Or maybe vice versa. I think about the probability of this disease. The Russian Roulette aspect of planning a future. The Sock Problem would have made more sense to me as a kid if it had been given a bit more weight. If Mr. Lee my math teacher had told me that each of my siblings had our own individual genetic sock drawer and we had equal chances of making a deadly match or mismatching, I might have understood it better. Well, Mr. Lee, I get it now. And unfortunately, my unlucky gene sock match doesn't remove any socks from the drawer for my siblings. They remain equally likely to test positive.
I have now received my results. I, too, am positive. I got that deadly pair of socks. If anything, the mental health issues have remained, if not worsened. This week, I wore my sister's contacts for three days and didn't notice. I came to work without my badge or key. I often could not process information when it was told to me. It's scary and it's frustrating to have a situation be so out of your control. I'm alternating between angry, and sad, and scared, and worried, and feeling sorry for myself.
When I found out my dad's diagnosis, at first I was in a state of shock. I couldn't get out of bed. My mom and I sat and watched Gilmore Girls for weeks because we couldn't do anything else. But, as my functionality came back, I became determined. I would not take my body and mind for granted. I would not waste any more precious time. Since that diagnosis, nearly three years ago, I have applied to graduate school, become a certified teacher, bought a house, trained to run in two half-marathons, traveled to two countries where I had never been, and gotten my first tattoo. My tattoo is of a shell I brought home from Mexico (a visual reminder for me to travel and continue to adventure).
Now that I know for sure that I am negatively positive for Huntington's, I plan to get married, start a family, travel to more places, read, run a marathon, climb Mt. Rainier, try a stand-up comedy open mic, and write down my stories. I want to write down my dad's stories. Eating healthy and exercising and doing things like crosswords and puzzles can stave off symptoms or keep them in a stasis for a time (although, of course, not forever). I'm going to keep doing those things as long as I can, because I am not going to make things any easier for this disease. I am not taking this lying down. I'm taking it running. With the wind in my hair and the pat-pat of the pavement under my pounding feet. Because I can.
I don't know what will happen with Huntington's research down the road. Maybe my symptoms will not be a death sentence when they arrive in the next decade or so. Regardless of that, I want to live every moment to its fullest.
It's not a bucket list. It's more of a While I Still Can list. I am keeping a gratitude list, too. I'm grateful to not be in the dark. To be able to use the information I have to help me live my best life. I'm grateful for the friends and family who have supported me and for a partner who doesn't seem to have run away (yet).
I do know that down the line, I don't want to deteriorate into nothingness. I don't want to be a vegetable, living as a parasite, wasting the time and money of relatives too sad to let me go. I want to go while I'm still me.
I don't know what happens next. None of us do, really. Any of us could get hit by a bus tomorrow. But I do know that, in the immortal lyrics from the Pretty in Pink soundtrack (the band is
Orchestral Manoeuvres In The Dark, but I definitely had to google that), "I won't
waste one single day."
Huntington's Disease Society of America (about Huntington's, how to donate to research, etc.)
waste one single day."
Huntington's Disease Society of America (about Huntington's, how to donate to research, etc.)
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| Me, two days post-diagnosis, sending an EFF YOU to this disease in my Huntington's Hope Walk tee-shirt after running 7 miles. THIS DISEASE WILL NOT DEFINE ME. |
