Multiple Sclerosis Centers of Excellence
Do It Yourself!
Kevin Byrne -- Portland, OR
“Hey, Eleanor! Can you come here and help me for a moment, please?
I needed help buttoning my pants, my 34” jeans. You know, the ones with the regular tab closure. The reality is my arms just don’t work anymore. My left has complete sensation, but it’s quickly losing mobility. My right arm has complete mobility, I just can’t feel anything. This combination makes everyday tasks difficult. Buttoning a button is my Kilimanjaro. Normally, I wear 36” waist pants and jeans. This way, I can take them on and off without unbuttoning.
My other option with pants is to buy ones with a hook and clasp closure, bypassing the need for a button. They don’t make them in jeans, and I really wanted to feel normal for a bit. I’m not willing to consider wearing elastic waistbands all the time, not yet. Clothes which will fit me, and don’t merely compensate for my disability, help me feel a bit more normal. Just for a moment, I feel normal again. For my self-confidence, I wanted to wear my 34’s. I just couldn’t get the button to work.
Ellie gave it a halfhearted effort before jabbing me with, “If you can’t put them on yourself then don’t wear them.” Barking orders like I was a Captain in the Air Cavalry again wouldn’t work. First, she’s my seven-year-old daughter. Second, she was right.
I struggled for the next 25 minutes, cursing everything under the sun except for Ellie. She was right. Do it myself. I ended the battle with a successfully buttoned pair of jeans and a newfound skill in this strange world in which I’m living. Today, I buttoned and unbuttoned my pants 10 times in a row, just to see if I could. My body learned a whole new set of motions. They’re childish tasks mastered a long time ago; learning them again when you’re a 46 years old is humbling.
I retired from the Army with MS in 2003. For a long time, my symptoms were manageable. My MS has worsened significantly over the past few years; it’s a battle so many of us face every day. Things I used to love doing, others I never thought twice about, are beyond my physical capability now. Caretaker assistance, incredible support from friends and loved ones, is always needed and valued. On occasion, however, I still demand the reminder to fight for my independence; this applies to many different facets of my life.
So, I say if you can care for yourself, then do it. As long as you’re safe, don’t worry about how silly you look or how others may react. If you can do yourself, do it. If you can’t do something, you won’t get the rewards.
Now, I am confident those close to me will help me in any capacity I need. Still, I go in with the mindset of ‘do yourself or it won’t get done.’ Force your mind into the urge to find your new normal. If you lose independence for a specific task, at least you put up one heck of a fight!
If my MS is going to worsen, it’ll have to take my abilities battle by battle, fight by fight. My time in uniform taught me a surprising number of ways to fight back. Push, learn, adapt. Take advantage of everything your body still wants to do and can do. Always push to improve.
And, for the sake of everything you value, Never Stop… Never Quit…
The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we.
It will never quit…nor will we.
This is why we fight!
(from spring 2018 newsletter)