On a Personal Note

The first time I created a blog, I was still a teenager in California. The first iteration of hamera.org was a self-assured site where I dumped whatever my brain had fixated on and needed to get out. 

Since I rebooted this late last year, I’ve been thinking a lot about what I want this blog to be. What should I write about? Who would be reading it? When would I post? What purpose would it all serve? How could I have the audacity to make an entire site on the Internet dedicated to me? This story helped me figure out some of that.

In January, I signed up to do an MRI as a healthy control for a research study. Reader, it turns out I was not a healthy participant. When I woke up from my nap in the MRI machine, the research assistants were gone. It was just me, the technician, and the PI. The researcher pulled me aside to explain that they had spotted anomalies in my MRI.

They had found lesions characteristic of MS. As she ran through a laundry list of symptoms that I didn’t have, I was reeling with confusion and dread. I had no clue what MS was. I had been concussed before, maybe that’s what caused these lesions?

She told me that I might have something called radiologically isolated syndrome (RIS), a condition where my central nervous system has similar lesions to MS. Crucially, RIS is asymptomatic. For a lot of people with MS, they won’t know that they have any lesions until the damage is enough to develop a symptom, like double vision or numbness in a limb. According to Cedars-Sinai, over a two-year period, a third of RIS patients experience a neurological event leading to an MS diagnosis, a third develop new MRI findings without symptoms, and another third show no change.

I didn’t know what to say or think for a while. Should I be panicking? This was a good thing, right? To catch it so early? What, exactly, had I caught? I’ve been in great shape for most of my life (no one ask me my mile time, though). I never thought of the possibility of having a neurodegenerative disease, especially not finding out about it at 22. In the weeks after, I cycled through brief moments where it felt like this would change everything about my life, and then the reality that it has been here all along, it’s already a part of my life. 

In the meantime, I got another MRI with similar, but optimistic findings. Although there were still lesions that very much gave MS, I had no new or active lesions! My condition wasn’t actively getting worse, and I was inching closer to a diagnosis. More great news came in that afternoon: the hospital wanted to move my first visit with a neurologist from May 15 to mid-March. It finally felt like I was getting somewhere after more than a month with unknown questions.

Yesterday, I got another call. Someone had canceled, and the nurse asked if I could come in. Within two hours, I was reviewing my MRI with a neurologist. At some unknown time, several lesions formed, and my brain has just…worked around them? Seeing the spots on the screen made me appreciate the resiliency of my body and brain even more. I still have to get spinal MRIs, a lumbar puncture, and bloodwork to figure out the next steps, but it’s relieving to finally have an answer.

Throughout this experience, I have constantly been struck by the odds of everything that has happened. To think that I would not have known anything at all if I hadn’t signed up for a random study is what really compels me about this situation. I’ve been so grateful to have caring, diligent physicians helping me along the way, especially the support of the original researcher who clocked that I may have RIS. 

I wrote this because it has been really weird to navigate the thought of having a precursor to a disease. Since the first MRI, I have been thinking about how to, or whether I even should, talk about this with my family and friends. I am super open with most things. What else are you supposed to do with life beyond live it and share it? But I don’t know how to talk about something that hasn’t clinically manifested yet and if it ever does, can look like so many different things. So until now, I haven’t told most of my family or friends. That’s part of what I want this blog to be. A place where I dump all of the weird, long stories/experiences I’ve had as a perpetually long-distance relative/friend/whatever. I promise the next post will be way more chill, though.

It’s strange to know that I have these scars sitting in my head that might flare up again one day and really change the course of that day/week/life, but until then, it’s just a possibility. Things in my head, really. More than anything, I still sometimes get hit with a feeling of dread that not now, but maybe possibly, eventually, I might lose myself to the entropy of my own brain. It’s a scary thought, but I’ve had to remind myself that it isn’t isolated to just RIS/MS/other acronyms I will learn in the coming weeks. All of this reminds me that we are so limited in our time here and what it can look like.

Maybe I’ll go decades without having anything happen beyond routine monitoring. Maybe not. Until then, I’ll have to get used to the unce unce of the MRI machine.