This is the first part of outlining some remarkable changes I underwent in my life at the end of 2023 and beginning of 2024. I’ll publish the other part soon.
At 17, my leg went numb for a month. “How odd”, the local health centre doctor said. After that month, the leg was back to normal and I didn’t think about it again.
At 26, the grade 1 brain tumour that the Head of Neurosurgery (hi, Mika #1) partially scraped out of my medulla and C1 stopped pressing on my cranial nerves. It alleviated the full-body numbness and tingling I had developed, but didn’t heal it completely. I returned to my life as a brain tumour survivor and a spinal cord injury patient, more terrified of death than I had ever been before. Time, therapy, good conversations and BJJ helped with that somewhat, but the fear was always there.
At 34, after a couple frantic A&E vists, a two night hospital stay, one spinal tap by the affable Head of the Neurology Ward (hi Mika #2) and a couple of months of waiting, I dragged my partner along to a Very Important Appointment. I hadn’t visited the neurology department since the day I was told about the tumour in 2016, but this day sucked less.
“So what you’re getting to is that I do have multiple sclerosis as well?” I asked the friendly young neurologist.
“Well yes, you do meet the diagnostic criteria”, he said softly. I took my partner by the hand. “When your brain tumour was discovered there were only a few MS-like lesions, now there are slightly more. But it is not an aggressive form of multiple sclerosis, especially since you might have had it for half your life.”
The next day, I looked at the online notes the doctor had made about the appointment. “Rauhallinen taudinkulku”, was the verdict. Slow-paced disease-progression.
The brain that eats itself
To me, all of this sounds a bit too much like an internet hoax, a fundraising scam. “I have multiple sclerosis, and oh, the remnants of a brain tumour, too. Please give generously.” The neurologist said that this was very, very rare to occur in the same patient.
“Oh great, can I get a case report written about me for a journal or something?”
“Maybe.”
I don’t believe in a higher power, so I can’t feel anger towards anyone who decided that one neurological condition wasn’t enough for me and two sounded a lot better. But at least I get to feel special again.
MS is laconically charactised as a “degenerative autoimmune disorder of the brain and spinal cord”. You could pick other adjectives, like “chronic” and “incurable”. At this moment in my life, the d-word feels the hardest to deal with. On a layperson’s terms, my white blood cells are gnawing on my central nervous system and without intervention, I will not get better. And even with medical intervention, there is no absolute guarantee how I’ll feel in 5, 10, 20 years.
Yet, I am not able to see my new diagnosis as a tragedy. I have a lot to be grateful for.
Good news about my multiple sclerosis diagnosis
- I now know more about my body and even understand some aspects of it better. This can never be a downside. Also I am now in treatment, better now than later.
- Every medical professional with an opinion has stated I appear relatively untouched by the disease so far, both clinically and when interacting with me. If I have truly lived with multiple sclerosis for 17 years without medication, I feel very fortunate.
- I have been told the medication available in 2024 slows down disease progression far more effectively than compared to, say, the nineties. For decades, there weren’t even any course-altering meds available! I’ve started with medical infusions and hope they will work for me.
- I was told not to stop doing anything I enjoy doing now. Including BJJ, even with my medication making me a bit more susceptile to infections. The doctor felt my persistent people hugging hobby has more upsides than downsides.
- I already identified as disabled so this isn’t too much of a re-evaluation of my own worth.
- My team at work have been supportive, as have family and those friends that already know.
- I might finally learn to allow myself a bit more guiltless rest. Fatigue is a common MS symptom! Chronic illness is tiring mentally and physically, no wonder I’m not always the most productive individual.
- I’m able to work and train BJJ four times a week. I could do a lot worse.
New Level of Embrace the Suck Unlocked
I’m not trying to minimise my health news. I am pretty convinced some shitty days and even weeks are probably in store for me and my slightly more broken nervous system. I need to keep taking my vitamin D, make a plan for possible relapses in my condition, show up for medical appointments and maybe even finally get round to fixing my most detrimental lifestyle choices (nutrition and lack of sleep, I’m looking at you).
And yet, at this moment I feel like I am so over being afraid all the time. I spent years being terrified of my brain tumour returning. I cannot start being afraid of MS too. The best case scenario is that my quality of life remains reasonable for decades, and it would have been a bummer to grief something that doesn’t end up happening.
(I’ve already decided that if I can’t do BJJ some day anymore, I’m taking up wheelchair rugby. But let’s not get ahead of ourselves.)
