It has taken me more than ten years to develop a mental blueprint of how I am going to die from Huntington’s disease.
My moods will become so emotionally volatile that my children will avoid me altogether.
Speaking will become harder and harder until I won’t be able talk at all anymore.
I will stagger and stumble until I become confined in my body.
I will lose the ability to swallow, and likely end up with a feeding tube.
This cycle of disintegration is already at work, and it will manifest, unpredictably but assuredly, until I die.
Finding out what the future had in store for me
Even though I knew later onset Huntington’s disease was very much a possibility for me, growing up I was never ill. I broke no bones and escaped the agony of any accidental injuries.
I amassed decades of sobriety rather easily, considering my reluctant path towards surrender. I figured my genes were charmed somehow, so my results would certainly be negative.
I’ll admit, there was some magical thinking going on when I entered the testing phase. This did not serve me well when I got the positive result. Honestly, I lay on the couch for a year before I could even begin to deal with the positive result.
Someone later pointed out that my own mother (who also had HD) had never broken a bone or missed a day of school. She had never been sick a day in her life, save for that one cold that took her out in the end.
Coming up with a plan
If magical thinking did me no favours, what did serve me well was time, therapy and soul searching. Finally, I came up with a plan. If there is one overarching truth I’ve learned from this whole process, it is that I cope better if I have a plan. So, I started making plans to support this hellish march towards my inevitable demise.
First, I participated in advocacy and research to feed my soul. Then, I found a job as a technical copy editor that allowed me to feel competent and be part of a team of ‘normal’ people. I also had a power of attorney put in place so my medical wishes are clear.
I am also doing all sorts of frontloading such as making music playlists to calm me when I am agitated. These are already coming in handy. During an emotional crisis I self-soothe much better with earphones. I have a years-long project of writing hidden messages of encouragement for the people I love, so they can come across them when I can no longer communicate.
Working on that bucket list
My bucket list accomplishments to date have been satisfying. Every year I hike with my best friend in the mountains. I own a (sometimes) working convertible. I met Rufus Wainwright. I have had joyful visits with the four living sisters my father never knew he had.
On a daily basis, I try to keep myself present and nurture relationships with my family and friends however the day will permit.
Enter the pandemic
Then COVID-19 came into all of our lives. I got infected, and it became the worst diagnosis I have ever received.
For about a week there, I thought the disease would take me out – quickly. And all of my carefully laid plans would have been for naught because this new illness would wipe me out.
Way too early.
I would never get a chance to be a grandma. I wouldn’t get to travel to Europe. No more yearly mountain hikes with my friend Nina. In an instant, time vanished and I saw the consolation sideshows on my twisted show boat ride to disintegration disappear.
I wept bitterly.
Suddenly the fate I have complained and moaned about having to endure started sounding pretty good to me. I had often consoled myself with the notion that HD will probably take me out later in my life, if my path mirrored that of my ancestors.
But until I got seriously ill with coronavirus I had no sense of what an actual comfort the future I feared had become.
As much as I fear being killed by Huntington’s I have accepted it. It is my destiny, damn it. I have claimed it, and I want to be around to enjoy/ endure it. In fact, I think now I have come to think of it as wanting to enjoy what I will endure.
I know it’s not going to be a rosy path or an easy path. But it’s my path. I have accepted it, and that’s a good thing. I am all set to play by whatever unexpected rules HD decides to dole out to me.
Savouring a second chance
I was sick with COVID-19 for three weeks.
A few days ago, my doctor meets me, wearing full PPE. I had parked outside her office, and she had come out to my truck. (The convertible is broken again.) Based on my lack of symptoms and quarantine time, she declares that I am now negative for COVID-19.
It was a negative result that I never planned for, and I still savour the diagnosis.
I am free, at least for now, from that blight, that usurper that sought to take my path from me. A path I’ve come to appreciate.
While coronavirus scared the hell out of me, it also adjusted my attitude: I’ll take the HD. I want to live until Huntington’s finally claims me.
NPS-IE-NP-00139 May 2021