Many of the events below Kendall and I have already told and retold. I think each time I tell it, I remember something else or reflect on it a bit differently than before and that gives me a bit of catharsis. If you want to spare yourself some of these cathartic redundancies, please skip down to the big letters ‘OH BOY, HAD WE HEARD OF MS.’ If you want to relive a little of the traumatic endeavor from my perspective, feel free to read the 5th edition retelling of the story below:
February 7, 2024, was a disorienting day. Kendall and I had just returned from celebrating my birthday in Los Angeles. We got to visit some good friends, enjoy some good food, and drink some good drinks (maybe one too many on my behalf). It was a long overdue return to our temporary west coast home. We had just completed our annual dry January so naturally, we thought it best to fast re-indoctrinate our systems with 2 weeks of birthday celebrations. Upon our return from Los Angeles, we attended a stunning Jersey City wedding ceremony with a New York City skyline backdrop so pristine it might’ve been hand-painted by a 1950s set designer from the Golden Era of Hollywood. It was another sleepless and celebratory night. The next morning, Kendall had what she thought was a vicious hangover. And it very well might’ve been a vicious hangover but something was different. Her vision was completely blurred. I told her to sleep it off and drink some water, my usual prescription for her disproportionally aggressive hangovers. Not only were we coming off a dry January, but we had made some pretty substantial lifestyle changes over the past year that involved cutting way back on drinking and improving our diet. I just turned 31 and Kendall is quickly approaching 30 and we had learned that the end didn’t justify the means as Machiavelli had promised when it came to alcohol. I assumed our week of celebrations had simply caught up to us and that blurry vision was just a temporary consequence.
The next day we set off for Connecticut to visit Kendall’s parents and enjoy a nice dinner at Union League Cafe in New Haven. It was Tuesday, February 6 and Kendall’s blurred vision had now persisted for 2 days which seemed increasingly strange. As we sat down for dinner I noticed a physical manifestation of her persistent symptom: one of her eyes was not moving in synch with the other. If you saw Paul Giamatti as the lazy-eyed grumpy teacher in The Holdovers this past year, it looked a bit like that. We all thought it was quite strange and freaky-looking and I don’t think Kendall enjoyed being looked at like she was strange or freaky. This prompted a Telehealth visit the following day. The doctor’s assessment: not an emergency. He gave her a referral for an optometrist later in the week. We were all a bit unsatisfied with the assessment considering the discomfort Kendall was in. Because her symptoms would ever so slightly resolve when one eye was covered we thought maybe we would run and get an eye patch to act as a temporary band-aid until we could figure out what was going on. We drove down to the local town center and saw an Ophthalmology storefront/office. Perfect! Maybe we could kill two birds with one stone, get an eye patch and perhaps an Ophthalmologist might inquire why we wanted an eye patch and perhaps this Ophthalmologist might offer some advice or insight in the process. We walked in and asked if they carried any eye patches, but they didn’t. But an ophthalmologist did happen to hear us inquire and asked why we wanted one. We explained Kendall’s symptoms and she said almost immediately that those are serious and time-urgent symptoms and she needed to be seen ASAP. Kendall’s insurance coverage is for New York State so unfortunately we were in a bit of a bind but it certainly gave us a sense of urgency we didn’t have after our anticlimactic Telehealth visit.
I hopped on the computer when we got back and started to look up eye specialists in NYC who could see her sooner rather than later. Bam! Mount Sinai Eye and Ear Emergency Room - 24 hours 7 days a week. Leave it to New York City to have a niche 24-hour emergency room. Kendall wanted to leave right away. My sense of urgency needed a little vamping up because I saw it suitable to cram down a delectable gluten-free sticky toffee pudding her Mom made for my birthday and try and Marie Kondo fold my clothes into my bag. Kendall wasn’t too pleased. We jumped in the car and sped down the highway. Kendall was anxious and thinking the worst which was pretty consistent with her history of hypochondria. I was aloof but concerned which was pretty consistent with my history of aloofness.
We arrived at an empty waiting room. A nurse quickly assessed her symptoms and also thought something was quite off. She was admitted into the emergency room where we spoke to an emergency room doctor who asked some questions and conducted a quick exam. She also thought something was off. She called in the on-call Ophthalmologist and we waited anxiously in the ER bed for his arrival. After about 30 minutes, he arrived and escorted us into a small room with some big eye exam machines that gave off this annoying loud humming sound. The sound in conjunction with the beaming fluorescent light didn’t make for the most welcoming environment. But the doctors were warm and concerned which helped to ease some of our stress. We had both gone to emergency rooms in the past and I think what caused us even more concern with this particular visit was how fast things were moving. We were used to sit, wait an hour, move sit, wait 4 more hours, here’s some Tylenol, sit, wait 2 more hours, go home, here’s more Tylenol. But this time was different. Things moved fast, doctors acted overly nice and overly concerned. This extra attention to detail and fast pace made me think that something was more wrong than we had hoped.
Back to the humming fluorescent eye exam room. He conducted an eye exam. His conclusion: she had perfect 20/20 vision in each eye, this wasn’t an eye problem. He then informed us that if it wasn’t an eye problem, it was likely a neurological problem. The room got very quiet and cold. The humming seemed to get louder. He started into a long monologue about different types of neurological issues. He said when you’re talking about neurological problems that are affecting your eyes, it means the brain isn’t properly communicating with your eyes. This could mean 4 different things. The first and probably the worst-case scenario is a mass. He didn’t think she had a mass. The next and also not a very good scenario was an infection. But if she had an infection he said she would probably be sick, like with a fever or chills. He didn’t think she had an infection. Which left him with two different hypotheses: Ischemia or Inflammation. It became very clear very quickly that there weren’t any ‘good’ outcomes. He said Ischemia means a clot or a stroke, but Kendall is relatively young and seemingly healthy and doesn’t have a family history, he didn’t think she had ischemia. Which left him inflammation. “Have you heard of MS?”
Oh boy, had we heard of MS.
Over the past year, Kendall had said to me time and time again, "I think I have MS." I had become resistant to her hypochondria over the past 9 years and perhaps didn’t take her concerns as seriously as I should’ve. After all, if she was right about her concerns she’s not a hypochondriac at all, she’s a fortune teller, a futurist, a seer, or even maybe a prophet (she’s not a prophet). Kendall had experienced eye twitching and tingling in her hands roughly a year before. She had a Ph.D. in WebMD during this time and as she always deduced, all her symptoms led to MS. She even saw a particularly misogynistic and dismissive neurologist at the time who gave her the same dismissive prescription I had, get some water, get some sleep. He asked her what she did for a living and Kendall replied she worked in nightlife and he even suggested she go to AA because everyone who works in nightlife must be an alcoholic. This was without even asking her if she drank, because had he, he might’ve found out that she drank no more or no less, but yes probably much less than the average 28-year-old. I even have a particularly nasty letter saved in my notes app for this dismissive doctor should I ever feel impassioned enough to let him know that his dismissiveness came with a cost.
The rest of the story, just as much of the story I have already told you, is shared. And as much as retelling this story over and over with slightly different perspectives and insights gives me catharsis, I will try and focus on the things you haven’t heard.
During the week Kendall was in the hospital, she was a little different than normal. She seemed softer and perhaps a little sweeter to me than our typical day-to-day. I think she was scared. And rightfully so, we were all scared. After all, they hadn’t reached an MS diagnosis yet. The doctors had told us they were considering 3 things, MOGAD, NMO, and MS. When they initially told us this in the hospital, I think all Kendall heard was MS because we were receiving an overwhelming amount of information at the time and that was what they had deemed most likely. But when I went home that night from the hospital, I looked up the 3 and started deep-diving into research to find out everything I could about these three diseases. The way I saw it, in simplified terms, is that they are all three very close cousins with different manifestations and different outcomes. They all present very similarly. And where they typically present differently, they don’t always present differently, making them hard to diagnose with 100% certainty. MOGAD seemed like the slightly friendlier cousin to MS. On average, a better prognosis and reduced long-term advancement of disability. NMO, on the other hand, was the evil cousin. If left untreated after the initial attack, life expectancy is five years. Those outcomes could improve with treatment, but the disease progression is far more aggressive on average with much worse outcomes. And they kept not ruling it out over the course of the week. This was my biggest struggle during Kendall’s time in the hospital.
See Kendall hadn’t heard NMO the first time it was mentioned. And she made the strong decision that week to stay off the internet and not go down the rabbit holes that she loved to dwell in before. The circumstance itself was scary enough and she didn’t want to scare herself any more than she already was. There was no use. It was what it was and it was completely out of her control or anyone’s control for that matter. After I read up though on the diseases being considered, I panicked. I have a flare for harping on worst-case scenarios, after all, I am an artist. However, I didn’t want Kendall to experience the same panic and stress over something that we couldn’t control. I tried to guard her from knowing about those outcomes. But Kendall is perceptive. She could sense our stress. She would ask me when I would try to hide tears, “Why are you so sad, MS isn’t that bad.” It made me even more sad to hear her try and be strong on my behalf. MS is certainly not “good,” but people generally get a full life albeit with some adjustments. So I understood and agreed with her sentiment. This was my biggest struggle during the week in the hospital and the week leading up to her diagnosis.
Now, I am thankful for going through this struggle. It made me diligent and focused and gave me a purpose to divert my energy from worrying and into researching. I looked at everything. I compared her blood work, her cerebral spinal fluid, and her MRI scans with NIH studies and data. What did her results look similar to, and what did they look different than? Why was she negative for oligoclonal bands if she had two? What in her test results leads you to believe this is more than likely MS? Could she have seronegative MOG or NMO (after all, 20-30% of MOG and NMO patients don’t test positive for antibodies)?
It seemed like an eternity waiting for Kendall’s follow-up appointment and diagnosis, but once it came, they confirmed their suspicions, Relapse-Remitting Multiple Sclerosis.
Though this is still very new for both of us, I learned a lot during this time. I learned what I did right as a partner and what I did wrong as a partner. I learned what I thought I did right as a partner but was actually wrong and what I thought I did wrong as a partner that was actually right. I learned that just because I think something is helpful, it might not be helpful. And I learned that sometimes being helpful is doing nothing other than being my normal, goofy, aloof, self. Kendall has even since said there is no right or wrong in that scenario. We collectively experienced trauma and how we dealt with that trauma was just a reaction. And there isn’t necessarily a right or wrong way to react to something traumatic.
I’d love to share with you the lessons I learned separately from this novel of a story I just wrote in a nice digestible manner. Please check them out and take it all with a grain of salt. After all, I’m still learning.