Multiple sclerosis, Nick, Struggles

More than MS

I am not my disease.

Which is an odd thing to say for a girl who writes nearly exclusively about MS..

I wish I could say there are days I don’t think about it at all. Carefree, that’s me!

There are times, however rare, that the disease hides in the dark crevices of my mind, only to bubble to the surface when roused by an external stimulus.

Those are the relatively symptom-free days, when I can go about life as though it were business as usual.

But I can’t go too long without MS cropping up – every other night is shot night, and I have an app (seriously, I do) that chimes around 9:30 to remind me that things aren’t business as usual, that I am tethered to this treatment, that I will be confined to this world in which I always have MS.

I don’t want to be defined by this disease.

Check out those muscles! (Just ignore the frizzy hair and bad outfit.)

Nick and I had a conversation before bed last night. Wait, let me back up and set the scene. Nick and I were in bed, both angling for space and covers. I, of course, was winning.

“Man, you still have those leg muscles,” he marveled. (He likes to call me Quadzilla. Years of dance gave me quite the firm base, so to speak.)

“Yeah, they’re still here,” I laughed. “It just feels like my brain isn’t getting through to them.”

Then I must have paused in contemplation.

“You’re still here, you know,” he assured, tucking me into my blanket and kissing my forehead.

I nodded, grateful for the vote of confidence.

It’s easy to get caught up in this disease, with daily reminders large and small. It can be all-consuming, and I let it be for a time. I gave into fear and worry and worst-case scenarios.

Then I went through a knee-jerk reactionary period in which I didn’t want MS to be the first or even fourth thing that described me. I wasn’t in outright denial of circumstance, but I was coming close, teetering on the precipice of a reality where I didn’t take my medicine and ignored doctors’ orders.

But then I realized that it’s a pretty permanent condition, this guest that has taken up residence in my body. And I want people to know that I am living with it — no, that I am thriving with it.

MS may have changed the conversation somewhat, but my outlook remains the same.

I am still me. I still feed stray animals, read compulsively, take photos of my pets daily, rail at bad drivers, work too much, snort when I laugh, go OCD over making lists, collect PEZ, obsess over shoes, and leg wrestle with my husband in bed.

Having MS doesn’t alter my makeup. My compassion, my intellect, my curiosity, my tenacity, all still intact.

The tenacity might have even grown a bit.

So, no, I’m still not jumping on the “I have MS, but it doesn’t have me” bandwagon.

But I can say this: I am more than my disease.

7 thoughts on “More than MS”

  1. Your determination is truly inspiring and I gain more respect for you with each passing day. May we all face something so life-changing with your level of bravery.

  2. Kudos to you for recognizing the essential mechanism by which MS won’t take over your life: by reaffirming “I am still me” and exalting the complete you.

  3. I so agree with what you say. Unfortunately, I don’t see MS as the “guest” you mention; I prefer to view it as an invader, who has robbed me of so much.

  4. these are the same thoughts i struggle with daily… i would love to say that MS doesn’t have me… but that would be lying… it does have me. now it’s up to me to learn what to do with it… for me, the best option i think is to make it a part of who i am… not all of who i am…but i must acknowledge that it is a part of me. my life path is altered…. unfortunate but true. my career must change… my daily decisions must change… how i handle certain types of people or situations must change….

    so MS does have me… but i am doing what i can to not lose the rest of me in it…. and to say that i haven’t changed would be lying too… my priorities have changed, the things i place value on have changed, the people i spend my energy on have changed… some of my convictions have changed… i could go on and on but i won’t ha!

    1. Of course I don’t! Hope you are having a great weekend now that the pesky snow has melted! Day 1 is fine, the novelty and all, but anything more becomes such a drag.

      I’m stuck doing a lot of projects this weekend and probably next – but we should have lunch soon. Maybe I can sneak away on a Friday from work!

  5. Preach it sista! I can attest that you are still the feisty, fabulous Jenn that I have known and loved for what, 10 years now. You are an inspiration and definitely more than MS.

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