This probably has to be one of the hardest things I will ever write.
How do you say it?
What are the right words?
Are there even any right words?
Over the last two months, the answers that I’ve learned from those questions is a resounding “NO.” There is never any “nice” way to say
I have multiple sclerosis.
Some of you may be super confused right now. You might say, “But Kelsey, I’ve known your for [years], [decades], [all your life]”… insert your timeline of choice…
Yea, it was a shock to me too.
And yet, it wasn’t…
I was diagnosed officially just about 2 months ago at the end of January.
For me this diagnosis was relief. It was confirmation that I was NOT crazy and that I actually was experiencing all of the weird things that have been happening to me for the last four years.
The worst of it happened this past fall when I was taking Masters classes, finishing planning our wedding, heading into the holidays with a small retail based business, and chasing around 2 kids under 3. You could say I was a little stressed (which brings out the WORST in MS patients, and can cause what we call a “flare.”)
Anyway, I kept writing papers for school and doing online course work and all of a sudden things that I have NEVER gotten wrong before (like we’re talking MINOR grammatical errors) were getting my papers marked down dramatically. And while you think that might not be a big deal, the most entertaining, and frustrating at the same time, was when I physically could not write what I was trying to say. I would type what I thought was “business was good,” and when I reread and edited it, it said “business was good,” but on return of my paper I had found that it actually said “dog was good.” Or something as strangely wild. You see because my neurons were not actually telling my hands to type “business was good”, but rather it’s new version of “business was good”… which happened to be spelled D-O-G.
Multiple Sclerosis is a disease of the brain and spinal cord. What is happening is that my immune system, instead of fighting the flu or a cold, is attacking the covering on my neurons. (It’s called myelin if you want to get geeky). And when that happens, think of it like your TV. If your cat chews on the cord and it starts to break the coating, it gets fritzy right? Whelp, that’s my brain. And that’s why I can literally tell my hands to do 1 thing (like type a sentence) and it does something totally different (like spell a different word). [And yes, for those who are curious, just writing this is CRAZY frustrating.. I’ve had to retype a million things already, probably have not caught half, and honestly… this is me- so if you don’t like my grammatical errors- then you don’t have to read it].
For the most part, it’s not as bad as it sounds. I have what’s called Relapsing-Remitting which means that I have periods where it flares up, and then most of the time it’s quiet. Some of my symptoms linger (like my “drunk brain” as I call it), but a lot of them go away.
Other things I have experienced is: vision loss in my left eye, slurring my words or not being able to say the right words, my right leg giving out, twitching, spasming, and shaking. So if you see me and I seem like an awkward flamingo… don’t worry, it’s just my MS, and I’m fine! (And please, it’s okay to laugh along with me- what else can you do when you’re hand is uncontrollably shaking like a broken robot?)
In the past two months I’ve been doing A LOT of googling. And what I’ve found is that there’s not a lot of real and raw resources out there. There’s a lot of “factual” surface stuff on the MS Society’s website (great stuff but not what you might want to look for… they don’t exactly have an answer when I search for “I have a disease I can’t afford” haha), OR you have people’s “oh-woah-is-me” comments on message boards (which still dont answer any of my questions and just make me feel worse about everything in life).
So here I am.
In all my real, raw glory.
Just sharing my story.
Because you never know who might need to hear it.
Or who might feel like an awkward flamingo,
just like me.
