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Wishing for normal

Blog Summary

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.
 

Living Like It's 1991

Blog Summary

“Well, at least 1991 was a good year.” My childhood friend, Mark, sent me that text not long after another heartbreaking loss of our favorite team, the Washington Redskins. Unfortunately, it was a result we’ve come to expect from the team of our youth. It wasn’t always that way. GLORY DAYS An Army brat, I moved with my family to Northern Virginia in the early ’80s. I grew up 15 miles from the White House but back then even politics took a backseat to the Redskins. There were very few solemn cases of The Mondays from September – January in the Washington, D.C. area; instead we usually started each new week basking in the afterglow of another victory.     In 1991, the Redskins finished 14-2, breezed through the playoffs and won their third Super Bowl in nine years. It all seemed so easy, expected and natural. Sunday afternoons were joyous occasions spent with friends; the smiles, the cheering, the enticing smells of pizza, nachos and homemade grilled cheese sandwiches – it was all too perfect…and we thought it would last forever. LIVING THE DREAM In the spring of 2007, I was still toasting the birth of our first child the previous December and when I wasn’t helping my wife change diapers, I was finishing up my MBA. Good things were happening in my career, with an upward advancement into a Director’s role at my company. We had the luxury of Angela shifting to a part-time job so she could spend more time with our new baby boy. It was all so perfect, our future lay sparkling ahead. We truly were living the dream … sometimes I wish we had taken a few more moments to enjoy it. Over the past several years, I had mysterious physical ailments. Whether they were pains and numbness or a decrease in coordination, I had presumed these oddities were side effects from a hectic life or just the realities of growing older.  In my mind, it was a small (and maybe expected?) price to pay in an attempt to further my education while navigating the corporate ladder. WAKE UP TIME But seemingly overnight, my health worsened and instead of numbness, tingling or random abdominal pains, things became more serious with falls down the stairs, ER visits, hospital stays and endless visits to numerous doctors … I lost count of the number of times I was tested for brain tumors or exotic diseases that most have never heard of. Along the path, I was even misdiagnosed with Crohn’s Disease. Eventually, a diagnosis of optic neuritis led to these mysteries being solved at The Mayo Clinic in May of 2008, where I learned that I have multiple sclerosis. I dream of feeling energetic again, being able to stand in place without pain, and living without daily medication and monthly infusions to treat my MS. I lived to be active. My wife would always chuckle, seeing me take the stairs when there was an escalator, walking when I could have driven, carrying all the groceries in one trip. I loved running, playing racquetball, going on walks with my family. I lived this way to offset a world that was dominated by sitting in traffic, cubicles and classrooms and without it sometimes I feel something’s missing…I know something’s missing. GOLDEN MOMENTS Having a chronic disease like MS has served as my gateway to a greater appreciation for day-to-day life. The high moments are so much richer because I know how far down the lows can go. I might not be able to celebrate like its 1991 or move like it is 2006, but my spirit remains unfettered to make every new day better than the last. Each new season I hope will be a return to the Redskins of my youth, when the wins were expected and the celebrations were constant. Perhaps, I think that a return to the Redskins’ gloried past means a return to my world before MS. Life was so innocent then. My health seemed so perfect. I wish I could reach out to that teenager I was in 1991 and share my new belief that allmoments are golden moments in life … with family, friends, your career or even just cheering for your favorite team. The expected might actually be fleeting and good health is not guaranteed. I live my life now thankful for each day and savoring the special moments – the Redskins might not win the Super Bowl in 2013, but I’ll continue to live and enjoy my life as if they had.