Spotlight: MassME Remembers Walker Storz

This heartfelt tribute was written by MassME member Nick Joliat in honor of his friend who had severe ME/CFS.

Last spring my friend Walker Storz died of ME/CFS in New Mexico. He was 30 years old.

I met Walker on an @MEAction internet forum about five years ago and recognized him as an
artistic kindred spirit. I never met him “IRL” but we stayed in touch and a couple years ago
when we were both a little less sick we worked on some music together. Walker was very
smart, very talented, had a mischievous and slightly deranged sense of humor, and above all
was insatiably curious about the world, a quality which shone even more brightly when he was
sicker than most people even realize you can be while still being alive. I wish I could’ve seen
where he would’ve gone.

I’m not friends with that many people who have severe ME/CFS; it’s hard to meet people when
both parties are too sick to even show up to the video call support groups anymore. Add to that
the obviously many other shared interests and sensibilities that a friendship involves, and it
made my friendship with Walker improbable and one of one. There are jokes that I think of
now that only Walker would’ve gotten. The world is colder now.

During his last months this spring, in spite of being way too sick to even listen to music, Walker
texted me about music frequently, in poorly transcribed voice to text messages. He was very
interested in the ecstatic Phrygian ritual music of Ancient Greece, and the myth of
Orpheus. The way the Ancient Greeks had three different words for three different notions of
time, and how those ideas might be applied to music. It makes perfect sense to me that
someone who had to endure the endless temporal wastelands of very severe ME/CFS, where
you can’t even listen to books or music and are literally just face to face with the void, often in
constant pain, would want to find new ways of moving through time. But not everybody would
be looking across millennia for those ideas and still trying to think of ways to incorporate them
into music that they would never make or hear.

Once he was diagnosed as terminal, Walker was very clear with me that he wanted his death to
be politicized. He wanted people to know that he did not want to die, and he wanted his death
to be a wake-up call about this illness for anyone who might know about him. Like many of us
with MECFS he wanted to learn from ACT UP, the AIDS activism movement. I am certain that we
discussed the famous jacket of activist and artist David Wojnarowicz, which read “IF I DIE OF
AIDS – FORGET BURIAL – JUST DROP MY BODY ON THE STEPS OF THE F.D.A.” Those activists
faced staggering amounts of death and the cruelty of the Reagan administration, tied in with
widespread homophobia, but they changed the culture and while obviously the story isn’t over,
there have been huge strides in AIDS treatment and prevention thanks to billions of dollars in
funding. For someone who was as deeply in the shit, living as deeply marginal an existence as
Walker was, and facing imminent death, to be so concerned about the continuity of the struggle
made a big impact on me.

I am obviously not going to accomplish this task by myself or in one post but I will try to
politicize a bit for my friend.

First of all, obviously if we had any treatment for ME/CFS by now, Walker would be alive and
well. The fact that we lack such treatment is not because ME/CFS is some “weird” “mysterious”
illness that can’t be understood. It’s because our political, medical and scientific institutions
(particularly the NIH) have chosen to make ME/CFS the lowest-funded illness relative to disease
burden by a mile. Again, this is a choice.

But also, having any kind of decent social safety net in this country would really help people like
Walker hang on in the meantime. People in this country who get ME/CFS and don’t have any
money are beyond fucked. Having to show up for court dates to prove they’re sick when
they’re too sick to show up for court dates, to qualify for disability payments which, if combined
with a very successful gofundme, are barely enough to scrape by on. Walker didn’t even get
Social Security because he was still in college when he got sick. There are many people like this;
you may not see them but they are out there, sleeping in their cars in Walmart parking lots.
My time with ME/CFS has only deepened my understanding that good and (especially) bad
things happen to people for absolutely no reason. The idea that if you have a “healthy lifestyle”
or whatever you are safe from these catastrophes is unfortunately bullshit, just like every
version of the myth that people get what they deserve: a philosophy pushed by the few who
benefit and believed by many people who understandably don’t want to feel guilty or afraid. I
swear it can happen to you. I was very active, healthy, etc.

One way you can help is to join me in donating to @polybio.rf and @crookedforestinstitute in
Walker’s memory and at his request. Polybio is a nonprofit doing research on ME/CFS and other
infection-associated-chronic illnesses. Crooked Forest is a nonprofit creating affordable housing
for people with chemical and environmental sensitivities (which is a big problem for a lot of
ME/CFS people).

If there are any further updates about Walker’s memory I imagine they would be posted by
@storzfamilyphotos.

Walker and I got sick around the same time (2016, 2017), when I was about as old as he was at
the time of his death. With ME/CFS you kind of die twice; when you first get really sick you
have to give up your career, social life, most pursuits of any kind, and start living outside of
society like a ghost. As much as I see my own life as being riven in two by this illness, it has
always struck me how much harder this is for those who get sick at a younger age. Walker
didn’t even get to finish college. He was supposed to be just beginning.

Goodbye my friend.