Why Multiple Sclerosis Doesn't Get on My Nerves

When I was first diagnosed with MS at around 40 years old, it pretty much stood for Mighty Scary to me. How could it not? All I heard was you may not walk again one day… may need a wheelchair…. may go blind… may even have sexual issues. Oh boy, that last one scared me. I just hoped MS wouldn’t stand for Mike’s Soft…

Anyway, after a good party weekend in the summer of July about 10 years ago, I woke up with something very strange. No, it wasn’t a weird girl. My skin was super sensitive from head to toe; it hurt just to touch it. I went to take a not nice shower and I had to give it back. The water really hurt, and I had to get out fast. H20 went to “uh oh, something might be wrong.”

After gently slipping out of the shower, I learned that towels don’t just hurt when wise guys whipped you in the butt in the high school locker room. Nope, I was dealing with something not just strange, but definitely wrong. Drying off hurt a lot and putting my clothes on did, too. It probably didn’t help that I was eating and drinking a lot. Like these COVID days, my pants were skin-tight and my belt was not on lockdown.

After a few days at work painting a condo, the skinny was that my skin wasn’t getting any better. I had a bizarre separation on the top of my head like I got my scalp parted. The whole left side was perfectly sensitive and itchy, the whole right side was perfectly normal, and my whole head altogether felt perfectly split down the middle. My brain was going bananas, but it was kind of cool in a tingling weirdo way.

I finally went to the hospital for help but that was a joke. Dr. No wasn’t very hospitable and kept saying “I think you just pinched a nerve or something.” It went on for months. At every appointment, I more or less said, “I’m telling you, Doc, my body is screwed up.” He didn’t seem to think so. Just going to the doctor said something was wrong. I hadn’t been to one in 20 years. He was getting on my nerves.

Well, this doctor finally gave into getting me an MRI. The X-ray results looked like an Asteroids video game. I had lesions… enhanced lesions. I even had foreign lesions for Pete’s sake. They were all lit up like a Lite Brite on a bad day. These scattered shooting stars didn’t give me lift off. I think my MRI stood for Mike’s Really Intergalactic.

My new and first neurologist gave me the heads up and was concerned. No head games with this guy. He called me right down to the hospital after viewing my brain wreck. He said I had so many enhanced lesions (they are the active bad guy ones), that it was the most he had ever seen on any of his patients. He couldn’t believe how well I was doing after seeing my head space wars battle on film.

That pinched nerve clown thought I looked good, too, but he really brain farted on me. How did he feel when he heard I had MS after just thinking I had an insignificant pinched nerve? I never did get to see him face to face or talk to him after my diagnosis. But we did bump heads a lot before it. I wonder what he would have said, certainly nothing mind-blowing. I guess when they were passing out brains, he thought they said trains and didn’t take one. It’s an old joke but I’m allowed to use it.

I’m sure the fact that I sustained a very serious head injury in college, 20 years prior to welcoming in MS, wasn’t helping my boggled brain. I had my head smashed one night in college and somehow no one on the baseball team saw what happened. We were all in a little bar and the next thing you know, I was lying on the ground and my head was in big trouble. I went into a short coma, spent weeks in the hospital, and it took about a year to recover.

A handful of years later, I was hit in the head again while trying to break up a fight. Some punk smashed a beer bottle over my head when I wasn’t looking. It was nothing compared to my first head injury, but my brain had already been through a lot. I had to deal with more head trauma from some numbskull.

The toughest part about MS for me is how it affects me athletically. I was a pretty good athlete in my day. I played all the sports in HS and then was recruited and played baseball at Clemson University. I was a real sports enthusiast. Even at around 40 years old, I could still get the best of the youngsters on the playing fields. That was so fun. I loved it. But that all changed…

One day early after my MS diagnosis, I ran to catch the trash guy one morning and my legs weren’t mine. They were lead feeling, heavy legs, and 50 yards felt like 50 miles. That was tougher and tougher to accept as the weeks went by and nothing changed. I used to be fast and could run forever. Now I was running on empty.

It really hit a sore spot that same winter when I tried to go skating. I was a pretty good skater with speed, grace and grit just a year before. But on that sad winter day, the ice got pulled out from under me. I stood up on the ice and realized quickly that my left leg couldn’t support me. It weebled and wobbled and I tried not to fall down. I feebly made an effort to skate around a small outdoor rink in Boston, wearing a weak brand of skates. There was music playing on the speakers above but my skating days were singing “slip, sliding away.”

I had to hold onto boards just to stay up. It was embarrassing, it was crushing. It was time to get off the ice and call it quits. That day I said to myself, “You have MS.” It stunk, it was disheartening, but not because I had MS, but because the great athlete inside of me skated away. That hurt a lot more than a bump on my noggin. Oh well, the good thing was that if I fell, at least my head would have been on ice!

It is now 10 years later and I have MS in my back pocket. It’s like my wallet. It’s always with me. Sometimes it’s full, sometimes it’s empty. My energy can be like that. But here is the trick. I always keep my MS wallet behind me. That way I don’t see it, I stay in front of it, and I cash in by always beating it.

I have to deal with many of the things my fellow MS friends have to deal with. Balance issues and falls unfortunately happen here and there. Just a couple weeks ago before my 50th birthday, I fell in my bathroom and split my head open on the corner of the sink. That was a headache.

The many bathroom issues I have are a 1, 2 punch which is a bummer. Nothing like having to go but it goes without you giving permission.

The constant tingling and numbness all down my left leg and foot 24 hours a day.

My ongoing fatigue plays in a no-energy league.

And every other nagging thing in between, if you know what I mean.

So, with my MS and my two head injuries coupled in, I feel like Brain Foghorn Leghorn. But ya know what, I’m not a chicken and have the best fog lights to see through anything clearly.

OK, that’s it for any complaining. I can deal with my MS very well. And my MS wallet made me rich. Despite any tough times, my heart was always in the right place. But now it makes the right place a great place.

I was always a good person, but I think I’m better now. I always did good things for people, but I do more now. I was always negative before but now I am not! This is the greatest thing I found in my life. MS brought me the power of positivity. And with it, I can and will beat anything. That is a nice feeling to have in your back pocket that is front and center. The Power of Positivity is always a plus!

These days I’m a huge sports fan as always and still play golf at a pretty good level. MS also brought art into my world and it’s the best fun! I do what I love and love what I do all day. Maybe MS can take away some things in life, but it can also put so many bigger and better things back in. Don’t worry about MS, embrace it. At some point, your MS might be Mighty Special!