Damn holes...

I was diagnosed with MS in March of this year. March 13th, to be exact... which, yes, was a Friday the 13th. (Bit of advice? Never make an appointment with a neurologist on a Friday the 13th... or really, any doctor in general... how could it be anything but bad news?) Some of you already know this bit of information... many of you don’t.... and I am sure some of you are thinking “So, what is MS...??”

Briefly, (and totally taken from the National MS Society website) “Multiple sclerosis (or MS) is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. MS is thought to be an autoimmune disease. The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.

Most people with MS learn to cope with the disease and continue to lead satisfying, productive lives.”

I like how they put that last sentence in there. Here I was worried that having holes in my brain was going to be a bad thing. But, whew, I’m relieved!

(yeah, I know, forgive me my bitter sarcasm...)

The symptoms of MS can vary widely from person to person - and true, some people never really experience any symptoms that would be considered disabling. Others end up blind and/or wheelchair bound. There’s a lot of grey area within which to fall between those two extremes. There are drug therapies available that are used to slow down the progression of MS, but there is no cure for it. They don’t know what causes it. Luck of the draw I suppose.

(lucky lucky me...)

I’m on a daily drug therapy that is an injectible medication. Yes, the girl who hated needles - I’m now giving myself one a day. The drug I chose, of the four available, has the fewest severe side effects, but does cause some very irritating injection site reactions. I’m bruised and bumpy and sore and itchy - which I suppose is better than "death by suicide" which was a "side effect" of a few of the other drugs. But it's a daily reminder of what may otherwise be an ignorable disease. Except, really, I can’t ignore it. Some days, it’s all I can think about.

My symptoms, so far, have been mostly cognitive in nature, though I have had a few physical symptoms. I haven’t yet decided if that’s “fortunate” versus having more serious physical issues, but maybe it would be best if I never have the opportunity to compare. Some days I just can’t focus. Some days I deal with outright confusion. Some days I am angry - irrationally quick to anger. (right now in fact, I am fighting the urge to scream at the man who is vacuuming my office - seriously, there are no students here, just me - IT DOESN’T NEED TO BE VACUUMED EVERY DAMN DAY!! GET OUT!!) Some days all I can do is cry and it’s usually about nothing, which is lovely, because I was never an emotional person before and I don’t like it now. And some days I am all of those things rolled in to one with a dash of exhaustion thrown in for good measure, because I haven’t been sleeping well for almost a year now.

I am pissed about the whole thing, quite frankly. I realize that part of me is grieving for a future that was never promised to me anyway - I mean, it’s not promised to any of us, right? - but that doesn’t mean I’m over it. The part of me that’s not grieving for my future? Is grieving for my present. I fear losing my sense of self. I fear becoming this person who is constantly sad and angry and tired and confused. Because I am so often sad and angry and tired and confused - and I don’t particularly like that version of me.

A friend, whom I haven’t known that long, pointed out to me recently that I used the phrase “I’m not normally like this” a lot when explaining my state of mind. The truth hit me like a ton of bricks - (which, as a sidenote, I find to be a weird saying - how many of us have ever been hit with a ton of bricks??) - my “normal” had changed. Maybe I wasn’t ever like this before. Maybe the Jamie before MS was not so generally unhinged. But this “new and improved” MS version of me? Wow. What a hot mess.

On the positive side (if there is a positive side), there are many things I have now decided that I want to do. Things I always thought maybe I would do “someday” - I want to do them now, and sooner rather than later. Life is too short and we don’t get second chances. Who knows what the future holds. I feel like I had better get some shit out of the way now - before new symptoms crop up and make more changes in my life that I didn’t authorize.

Right about now should be the part where I offer some inspiring words of wisdom about how this complication has lead me to a greater understanding of life and a zen-like outlook on the pain/beauty in the world. But that would be a bunch of bullshit, quite frankly. Don’t get me wrong, I’d be happy if this lead to that sort of understanding and I’m not closed off to the idea of it. But right now? I’m just pissed off. And sad. And tired. But not confused, which is why I’m taking this rather clear headed moment to write all this out. Believe me, some days the words don’t come as easily.

(damn holes in my brain...)