National MS Awareness Week: Day 1

This week is MS Awareness Week. Not that long ago, if those last three words would have popped up in front of me, honestly, I would have ignored them. Straight up. I just would have kept moving right along. Until recently, I didn’t know anyone with MS. I’d never had a conversation with anyone about MS. I knew what MS could do to people generally, but I didn’t know the deep particulars and it didn’t impact my life personally. I know people with cancer. I know people with diabetes. I know people with heart disease. I didn’t know anyone with MS. Not any longer. I have MS, and it’s opened up my word in ways I didn’t anticipate.

Not long ago, I would have read a headline or heard a PSA or glanced at the Subject line of an email declaring March 7-11 as National MS Awareness Week and I would have moved on to the next article, turned the station, or pressed Delete. At the very best, I might have thought, “That’s a great cause, but it’s not my cause.” I doubt, though, if I’d have bothered to even give that much thought to it. Not any longer. I have MS, and it is my cause.

I can’t afford to ignore this week. Whether I like it or not (and I most certainly do not), this week is about me now, and it will be until I die. I have MS. I have to deal with this now. I have to on a daily basis. On a weekly basis. On a rest-of-my-life basis. It’s not someone else’s problem or responsibility. It’s not someone else’s experience. It’s mine. I have MS.

I keep writing “I have MS” because it’s taken me many months to really come to terms with what “I have MS” means. I have to keep that reality right there in the front of my mind or I’ll lose it and stray. I have to keep it there because it’s my reality now. I know myself well enough to accept that if I don’t give this the attention it deserves, I’m failing myself, my family, my purpose.

Right now, I know what having MS means on a physical level. It means I give myself shots several times a week. I means I get really fatigued when I never used to in the same way. I know it means I get pain in my back and neck, and on certain days, it’s not pleasant. I know it means I stumble now and again like I’ve been drinking. I lose my balance. I feel shaky and anxious. I know it means now and again my words don’t come out of my mouth the way they form in my head. I seem to have to search for words a little harder. It means I grow paranoid I’ll lose my memories. It means my eyesight gets a little weird. I know it means a lot of things have changed and may continue to. I have MS and I can’t ignore that.

I also know having MS means I’m now a part of a bigger community of people struggling for answers and looking for solutions. I’m part of a movement that’s dedicated to doing something positive. I’m a member of an association of people who have something very much in common. I have the chance to make a difference, no matter how small or how large. I have the ability to make positive change. I have the chance to spread the word and hopefully provide some comfort and aid. How could I not view that as a gift?

Look, it’s no secret to the people who really know me that I’m a fairly serious person admittedly too much of the time. There aren’t too many days when I’m not questioning some cosmic force or trying to figure out my place in the universe. It’s not too many days when I don’t feel like I haven't created enough. Not put in enough thought. Enough effort. Haven't given enough thanks and gratitude. That’s become even more so now. But having MS sincerely and truly has forced me to slow the hell down and prioritize my days in very positive ways. I linger a little longer on my daughters’ smiles and laughs. I dig a little deeper into what my son is expressing. I appreciate a little more the care my wife has dedicated her life to giving others professionally. I take a few more minutes to pet my dogs. To appreciate my parents’ lessons. I hold more dearly the friendships I have and the wealth of knowledge I’ve gained from them. How could I not view having MS as a gift?

There’s no time for me (or any of us) to screw around. There’s no time to take relationships for granted. There’s no time to be complacent. No time to be satisfied. I have stuff I need to get done. I have kids I need to see make their way through their lives. I have help to lend. How is not becoming more aware of those things not a gift?

This is National MS Awareness Week. That means everything to me. Having MS is not a death sentence. It’s not something I feel sad about. It’s not something I regret having been handed. It’s not something I need or am seeking pity for. I know very well what could and couldn’t happen to me. And I know very well that it pales in comparison to what many people live through every single day. I know I’m of good faith and good mind, and I know I hold the keys to how I confront whatever it is I need to confront moving forward. 

This is National MS Awareness Week, and I am aware. Aware I have MS, but also very, very aware that things could be so much worse, and I’ll never take that for granted. Never. As long as I’m able, I’ll do what I can, when I can, to make others with MS that better off. Isn’t that what it means to be aware as a human being period?

I have MS. This is important to me. It’s vital to me. I want you to be aware. Below is a good description of MS. For me, though, being aware of MS is being aware that everyone has a struggle they're fighting. Let’s cut the crap. Cut the hate. Cut the party lines. Cut the distinctions and classifications. Cut the labels. Cut the judgement. Let’s accept the gifts we’ve been given and using them responsibly.  

“MS is a disease where your body attacks itself, specifically the fatty coating called the myelin sheath on nerves in the brain, spinal cord, and eye area. This causes many scars to develop, which prevent the nerves from communicating as they should. This communication breakdown creates a range of symptoms from mild to severe, and from temporary to permanent. No two people experience MS exactly the same way. Certain treatments (disease-modifying drugs) can help slow the progression of disability associated with MS, and the time between relapses varies greatly. Currently, there is no cure. People with MS have it for life.”