Wishing for normal

When you find out where someone went to college, the small talk that ensues is usually about one of its athletic teams, whether it was a good “party” school or perhaps if he or she chose it for its academics. For Virginia Tech alumni, the discussion usually includes a question about our school mascot: “So, what is a Hokie, anyway??”

I always had a difficult time explaining it. The more specific and detailed I was, the less success I had in answering the etymology behind the word, “Hokie,” and I’d usually be greeted with blank or confused stares. Eventually, I decided to go with the shorter—and catchier—explanation that a “Hokie” is a castrated turkey, or if I was in more polite company, a Hokie is just a really angry turkey.

(For the record, although our football stadium says, “Home of the Fighting Gobblers,” and our mascot certainly resembles the traditional Thanksgiving dinner, a Hokie has nothing to do with turkeys (or any animal). Here is a link to the actual legend behind the name, but be warned, it’s a bit underwhelming.)

In the months following my diagnosis of multiple sclerosis, I spent a lot of time reading books, researching and conferring with medical professionals about what MS is. I quickly learned there are no easy answers to the question, “What is MS?” Yes, there are concise clinical explanations, but I was stunned to learn that what isn’t known about MS far outweighs what is known.

“Why did I get it?” Not sure. “How did I get it?” Again, not sure. “What will my life be like in three years? 10? 30?” I asked my neurologist at the Mayo Clinic these questions and his answer was honest and straightforward: He had no idea. I could wake up the next day and be symptom free for the rest of my life, or in two years I could be in a wheelchair.

So how do I answer when I’m asked, “What is MS?” or “How is your MS?”  It’s actually surprisingly similar to my failed attempts at explaining what a Hokie is. The more details I give, the harder it is for me to communicate a clear answer. But, unlike the Hokie, there is no catchy explanation that gives justice to life with MS.  

Google "multiple sclerosis" and you’ll see what I mean. The list of symptoms range from muscle spasms to paralysis, not to mention it’s different for everyone. Some might have a little bit of this, others a lot of that. With so much individual variability of the disease and ambiguity of the how and why of MS, it’s difficult to find the right words to describe it.

To me, rattling off a list of ailments and the accompanying limitations really doesn’t strike at the true essence of my life with MS. I’ve learned to live with the constant pain and the tingling. Days are planned around my lack of energy and other physical limitations, and I give thanks for the vision I still have. But what does MS really mean to my life?

I’m frustrated that…
… I can’t start or end my day without a glass of water to wash down medication
… my feet are always cold although I’m in socks for most of the day  
… any light hurts my eyes
… sounds that shouldn’t irritate me, do
 
I miss…
… life before constant doctor appointments and medical treatment and tests
… being able to enjoy the sun
… running
… working
… warm feet
 
I worry what others think…
… when my wife stands while I sit in a crowded room
… when my wife is carrying the bags while I walk freely
… when I’m the “normal” looking Dad who isn’t out there, helping coach his kid’s little league team
 
I wish…
 … I never had to wonder about the day I tell my son and daughter I have MS, how old they will be, what I will say, how they will react
… I could walk into store and not be overcome with vertigo, fearful that others are looking, wondering what is wrong with me
… I didn’t get nausea looking through the chain-link fence at my son’s baseball games
… my child’s birthday party, or other social gatherings were occasions I looked forward to, rather than feared, wondering if I will have the energy, if there will be a lot of standing, whether I can handle what MS throws my way
 
That’s a snapshot of what my life with MS is like but really, I just want to feel normal again. Just give me 30 minutes. No tingling, numbness or pain. Clear vision, full energy and let me spend it with my wife and children; I want to know what that feels like. Just 30 minutes.
 
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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.

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