Into the Total Perspective Vortex
Note from editors: On November 29th, our dear member Marissa Morentin peacefully passed surrounded by loved ones. In her honor, we wanted to share the following entry on her behalf in order to give a glimpse of her wit and love with the world and continue to carry her legacy. We miss you deeply, Marissa.
I read my MRI report before I saw my neurologist and there was evidence of something called a “hyperintense signal” in my corticospinal tracts (brain damage). The corticospinal tracts concern voluntary muscle movement, which the radiologist noted was concerning for ALS. When I was formally diagnosed, I wasn’t surprised—I had googled my symptoms, and every single one aligned with ALS. What I wasn’t prepared for, what no one can truly be prepared for, especially at a young age, was having to look into the black abyss of one’s mortality, grip it and rip it, and find a way to come out the other side worse for wear, but not let it cripple you.
I spent the last quarter of 2023 in a daze. I told my boss, barely three months into my new position, and he did me the huge favor of lightening my load pretty much entirely and continued to sign off on my full paychecks. Of all the help and assistance I’ve been blessed to receive since diagnosis, that three-month break with pay from work was easily the most helpful. It gave me time to ponder, which is a very pretentious way of saying I spent nearly every day thinking of the terrible way my diagnosis doomed me to die… and coming to reject that negative state of mind nearly entirely.
There’s a scene in a science fiction book I like, The Hitchhiker’s Guide to the Galaxy, where one of the main characters (who’s a total fuckup and also conveniently President of the Galaxy) is forced into a machine called the Total Perspective Vortex. The gist of the machine is to impart the totality and sheer magnitude of the universe—you’re shown the vastness of the cosmos. Then a microscopic dot upon microscopic dot indicates the infinitesimally small portion you take up. The total perspective of how insignificant you ultimately are is meant to shatter one’s mind and spirit—except, in the case of the fuckup character, he experienced the Vortex as a computer simulation, meaning in that simulated universe, he truly was the most important person, and cruised out totally unscathed.
I got to thinking about how every human life is just a blip relative to the scale and length of time our universe has been around. A terminal diagnosis at 31 certainly bites the big one, but how many lives have been lost to more ignorant and often crueler ways? We’ve dodged extinction events but the base of humanity is built on the backs of endless suffering, and I don’t deserve an easier go simply because I don’t wanna deal. But that’s a pretty grim headspace to stay in, so I thought: how do I rage against the machine and make this awful diagnosis and likely death mean something? How do I spin gold out of shit? Simple. I join every bit of ALS research I qualify for.
We’re talking experimental meds, observational studies, and vial after vial of blood and cerebrospinal fluid. I donate my brain, spinal cord, and liver to neurodegenerative research post mortem. I make sure my body is otherwise healthy so when the Fates cut my life’s thread and I’m off to whatever adventure comes after life on Earth, my body can be parted out to save other lives. As an organ donor, I’ve learned that when the time comes, I’ll likely have to be trached and put on a ventilator in a hospital instead of hospice at home so the second my brain fires off its final burst of electricity in a too early grand finale, a transplant team can keep everything oxygenated as my body goes on one final strange and miraculous adventure. I read a statistic that organs notwithstanding, donating tissue and bone and skin, corneas, heart valves, and ligaments and tendons too can save (or at least drastically improve) over 75 lives. That’s my gold. That’s how this means something. ALS is robbing me of a family of my own, but this is how I’ll live on.
In retrospect, I believe that my ALS began before I was officially diagnosed, likely in March 2021, when I lost a pregnancy. It was a freak situation. My IUD failed, and I found out about the pregnancy ironically when I went to replace it. They couldn’t find the embryo on ultrasound, so for a month I was told the pregnancy was likely ectopic, which is when a fertilized egg grows outside the uterus. It can be fatal. I was in danger of the embryo growing in my abdomen until it burst a blood vessel, and I hemorrhaged. That was the most profound cocktail of emotions I’ve ever experienced—a terminal diagnosis doesn’t come close, strangely. I didn’t want to be pregnant but as the weeks went by, I had dreams and hormones flooding my body making me kinda-sorta attached to whatever stranger was hitching a ride in my body. I knew if it was ectopic, that there was no viability for my companion. That made me sadder than I was prepared for, as I loved my then partner and in the thick of the world spinning upside down from Covid, a new life could’ve been something hopeful. And then, at the end of a solid 4–5 weeks, my HcG dropped enough that my doctor realized my initial cramping and bleeding the day before my IUD replacement was a miscarriage. I saw my baby, though it wasn’t really ever a baby, and I threw it in the trash not knowing what it was.
The experience shattered me. I was diagnosed with PTSD and likely had a healthy dose of postpartum depression as the hormones crashed out of me. I became a ghost of myself, too afraid to even leave the house because something terrible had happened and my brain sincerely believed something else awful was waiting in the wings outside. It put a huge strain on my relationship, though in truth, my ex was entirely unprepared to handle a situation as complex and emotional as this. I believe he lashed out as a means of coping. The whole relationship was over the second I was yelled at in the clinic parking garage because I was too scared to go in by myself (Covid restrictions) and have another blood draw and invasive vaginal ultrasound— it’s just that we, or at least I, didn’t realize it for another 2.5 years. There’s no coming back from treatment like that at your lowest point from someone who allegedly loves you.
When my ex left me early last year, I hadn’t taken care of myself since I lost the pregnancy. It felt like being in a cave for years and being thrust suddenly into midday light. I didn’t know what to do or how to take care of myself. The first step was finding a job that paid, as I had spent the past three years fucking away my time at a startup that paid in stocks, not cash. I had had my resume on Indeed for about a month before, as in a fit of lucidity I realized the only way my life and my then-relationship would heal was through a solid salary and sense of purpose. I spent weeks stressed out and applying when one day my now-boss reached out about an open position on his team and he thought my resume was a good fit. I was baffled. I read the job description and felt like I would offer nothing of value to the team. I was wrong. The interview process was grueling, and during one of my interviews, unbeknownst to myself, I started experiencing bulbar issues from my slowly percolating ALS and had to hold my nose on camera the whole time for my voice to come out somewhat clearly. I was sure I fucked it all up, but I didn’t. I could hear the world go silent and the blood rushing in my ears when HR called to make me an offer and told me my new salary, which was waaaay above what I asked for. It felt like I was finally going to get my life back on track.
I was on boarded but had the strangest sensation that someone was slowly turning down the dials on the force my muscles could exert. There came a day when I couldn’t get up from the toilet without a disproportionate amount of effort where I realized that no, losing the ability to walk on your heels or tiptoes and occasionally slurring my speech wasn’t just stress. I went to see a new primary care doctor who called it ALS from day one. Her rationale was not just based on my speech issues or muscle weakness—early brain damage from ALS can often affect the frontal and temporal lobes in the brain, responsible for regulating emotion and behavior. She believed the depth of my despair over a pregnancy I wasn’t even gunning for wasn’t just a cocktail of hormones, depression, and PTSD. To her eyes, paired with my other symptoms, this was brain damage. I was referred to neurology and had the MRI, and we know how that went.
But I kept thinking of the Total Perspective Vortex as I acclimated to my new terminal state. I had been running through a gauntlet of despair the past couple of years, and in the face of being told I was actively dying, for the first time in years, I felt the powerful urge to LIVE. Pull a Thoreau. Live deeply and suck out all the marrow of life. It sounds absurd without context, but the terminal diagnosis of ALS gave me permission I don’t think I had had for years to finally live. In mid-December, around my birthday and the anniversary of my first symptoms (ankle, core, and tongue weakness with all-over muscle twitches), I resolved to be like that fuckup President of the Galaxy. Stare oblivion in the face and laugh over the total perspective, the eventual eventuality we all face—did you know that, to date, not a single human has escaped death? Fun fact. I wanted to walk away from my own Total Perspective Vortex as unbothered as I could manage. Knowing I could join the research cause was the push I needed to keep going and live it up in between lab work.
So here I am. I’m dying, but I’m finally free—from the weight of my pregnancy loss, from the casual cruelty of an emotionally unavailable “partner”, everything. The job that materialized right when I needed it is sending our cyber team to San Juan, Puerto Rico for a week in early March. Separately, my team and boss genuinely thought I was the best fit to attend a conference over the summer either in Australia, Portugal, or Japan for a week. My boss even found a company policy that covers airfare and meals for a caretaker now that I’m disabled. Individually, we’re also allowed to take an international trip to a relevant training or conference, so that’s likely another trip to come, all with companion expenses fully covered and a company policy to upgrade flights to business class over 13 hours including layovers. I got my renewed passport in the mail the day I was diagnosed, and the experimental ALS study drug I’m now on is produced in collaboration with the pharmaceutical division of my new company. Fate? Kismet? Divine intervention? Who knows. Ultimately, who cares? Today is all any of us are ever guaranteed, and I don’t want to spend what time I potentially have left weighed down by unanswerable questions. Shit, I had 2.5 years to do that during my time as an agoraphobe! There are ALS organizations that cover bucket list dream trips. I have a free disabled National Parks pass, and every state I’ve seen has accessible summer and winter activities. There are international and domestic ALS conferences to attend. I have a savings account to blow through and credit card debt to accrue! I plan on skidding sideways into my grave (or rather, on account of the eventual paralysis, being aggressively pushed) and somewhat eagerly awaiting my eventual reunion with beloved pets, long gone ancestors I have only dreamed of meeting, and most importantly, getting to finally meet the “baby” I lost. I dreamt it was a girl. Eventually, I’ll know.
But I’ll tell you all something. In my core, in my gut, I really believe I’ll make it to a game changing treatment. Maybe not a cure, but I just have this feeling that like the Terminator, my motor neurons/muscles will be back. Maybe it’s delusion, denial, insanity. But when I looked into my Total Perspective Vortex, I saw a life with ALS, not a death from ALS—call it hope or blind optimism. But we’ll see.