March 11, 2021
Update, Z’s hair is silver now and I love it. I loved it so much when we did it, that I almost dyed my hair the same color before ultimately chickening out.
Our hair color is something we’re born with but can change, our mortality, on the other hand, is something we are born with and can’t change. We can change the length of our life, through healthy eating, or checking up regularly with our doctors, or taking medications. Recently, I got the vaccine for Covid-19 and felt very lucky to be living through this pandemic as opposed to Bubonic Plague, for which treatment options were much more limited. Similarly, Z was lucky to be born with Duchenne Muscular Dystrophy (DMD) now and not in the dark ages, or even just 50 years ago. In the past, people with DMD did not live to Z’s ripe old age of almost-24.
In those almost 24 years, Z has been pretty bold about modifying his look. His hair color is probably the least permanent change. He also has a number of tattoos, with another coming soon, and a nipple piercing. My favorite tattoo is on his right shoulder, a black and grey portrait of a woman in a flowing dress, nestled in foliage, her curly hair gathered around her head. It is inspired by the art of Alphonse Mucha (a couple weeks ago, I finished my months long search for a dress to match hers, so that finally I too can gather my curls around my head and crouch in a bush for a photo).
Beyond aesthetic changes, Z has an expansive regimen of meds that have been able to slow down the progression of his DMD and have lengthened his life. Just the other day we drove two hours away so that Z could get an infusion of something called Reclast to help with his bone density. Infusions are about to become Z’s new thing. This 15-minute Reclast infusion could be thought of as just a practice round, it’s important, but not, to my knowledge, life-saving. However, the weekly infusion treatment just approved by the FDA for Z’s DMD deletion could be life-saving, not immortality making, but lifespan augmenting.
It’s an exon-skipping drug. It would allow Z’s body to produce an imperfect-but-still-better-than-nothing version of Dystrophin, the protein that builds muscle and something his body has never been able to make. It’s pretty exciting because it would mean that Z will lose strength slower and also maybe hang out with me till I’m 80.
When I started to realize the extent of my affection for Z, I started to also get really freaked out about his dying. I’m not that type of romantic who thinks we’ll always be together no matter what, but I’m pretty sure that Z is someone who will continue to be in my life in an important way. And yes, everybody dies, but the thought of giving this person such an important spot in my heart all the while knowing I would lose him, has been something I try really hard not to think about it. When I let myself think about it, it preemptively breaks my heart.
And I don’t know if this treatment will actually mean that I get to keep Z in my life until we’re both 80. I don’t know that about any person. Z doesn’t know how much this will help slow the progression of his condition, but it is an exciting advance in the treatment of DMD, a good start at least. It’s yet another reason to be grateful we are not living in the dark ages.
Z is understandably nervous for the treatment. Like I said, it’s a weekly infusion, which sounds pretty not-fun, and it will be for the rest of his life. Eventually, he might need to get a port – an implant that would make the infusions easier. According to him, it’s a body modification he would rather not make. It’s not as fun as a new tattoo or hair color, but then actually dying is also not as fun as hair dying. It’s not a body modification he chose, but hopefully one that will be worth it in the long run.