I still remember the day I first heard the words MS. It was long ago. And I was in no way ready to hear them. So I actually refused to hear them. Pretty simple solution right? Ah, the river of denial.

Funny thing about MS, while you may refuse to acknowledge it, it refuses to give up as well. It quietly works it’s way throughout your central nervous system. Destroying myelin as it goes. Leaving it’s mark in the form of plaques visible on MRI. Eventually, the plaques are of little diagnostic value as you progress. They simply measure how quickly you’re progressing. Though I recently heard a radiologist speak on the subject who felt that they actually may not offer the same value once you’ve progressed to a certain point.

Regardless, this destruction of the myelin is your undoing. It’s the protective sheath that surrounds your nerve cells. The technical explanation is Myelin is a lipid-rich substance that surrounds nerve cell axons to insulate them and increase the rate at which electrical impulses are passed along the axon. Make sense? You see, your nervous system is basically like an electrical system. A break in the wires and things start shorting out. Mayhem ensues. And unlike an electrical system, you can’t just apply electrical tape to repair those wires. Myelin (to date) does not repair.

There are a number of forms of MS. Most common is Relapsing/Remitting. The patient will suffer a relapse of symptoms followed by a period wherein the symptoms will “remit.” Either totally or partially. Some patients experience great periods of time between relapses. But when they relapse, it can be crushing. Some patients never progress beyond this. And thanks to the progress made in research and treatment, this is becoming more common. As is greater time between relapse.

Primary Progressive patients present with no relapses. They are simply progressing at the time of diagnosis.

Some patients (like myself) start as relapsing remitting and go on to become secondary progressive. Meaning, we started as Relapsing/Remitting and somewhere along the line, we stop remitting. We keep progressing.

For me, it was a couple of MRI’s with quickly advancing plaques. Two of which decided to plant themselves brazenly on my brainstem. Admittedly, this is where knowing too much is not helpful. I read that MRI and I melted. I knew the potential implications of that. Your brainstem is a bit critical to bodily functions like breathing, swallowing, blood pressure regulation. All things I already had problems with. I was pissed. I couldn’t believe with all the other geography of my brain and spine, it decided to set up camp on my brain stem. And I was frightened.

Thankfully, I have a fantastic neurologist. She also knows how to handle me. She knew I wouldn’t want to hear the word “progressive.” I’d already fought her (and lost) about using a cane. Getting a service dog. Starting medication. Being evaluated for and treating my seizures. I swore I was just passing out. Lol! She’d won every battle with me by understanding me and finding her way into my psyche. Not an easy job. This was no different. She proposed a trial they were starting for progressive patients. To enroll, she’d have to label me progressive. It was just a label for the trial. Was that okay? Intellectually I knew I met the criteria for progressive. But emotionally, I liked the idea of just calling it a label. I agreed as I would do anything to slow the progression of those little bastard plaques on my brainstem.

It’s now been a number of years since I was labeled progressive. I am progressive. I can now own it. Just as I own my MS. I look back to when I initially crashed and burned as I say, and I laugh at the denial. I kept saying I would be back to work in six months. Of course, we knew this wasn’t true. Working in surgery, they REALLY don’t care for you falling in the OR. You knock over a few Mayo stands and people start to get annoyed. Really annoyed. Intellectually I knew the truth. But emotionally, it took me a long time to accept it.

So I live my new life with MS. Because that’s what it is. Your life doesn’t end. You just have to learn how to do things differently. And sometimes it really is hysterical. And sometimes it really is awful. Just like every life.

I had my worst night of pain last night ever. There is no way to explain MS pain. It’s a combination of spasms and undefined pain you simply can’t control. I remember many years ago watching Montel Williams speak about wanting to take his own life due to MS pain. Ignorantly I thought, “how could it be that bad?” It really is that bad. Not that I would ever be suicidal. I love life far too much, but I remember when I finally got it. It grips you and just won’t let go. As if it’s saying “Don’t forget I’m here and I can do want I want to your body. You’ll never win.”

Well, every day I wake up I do win. I’ve beat cancer multiple times I have other significant health issues and yet, I wake up every morning. So yes, fuck you MS. I may have to live with you but that’s just it. I’m living.

#FuckMS