One of the hidden blessings of living with multiple sclerosis is how much more time I’m able to spend at home with my family. There are no long hours at the office nor cross-country business trips that keep me away for days or weeks at a time.
But within that good fortune is a difficult paradox to navigate: I’m here, but technically, I’m not always *really* here...
One ruler. One hand sanitizer.One blue toothbrush. About a dozen finance and management books.
Various key chains.91 cents…
It’s not often you stop to truly take stock of your current job, but that’s what happened in the Fall of 2011 when multiple sclerosis unceremoniously ended my career. There were no retirement parties, goodbye emails or farewell meetings. It’s almost as if I disappeared mysteriously into the night.
Not long after my title shifted from “Director” to “Long-Term Disabled” I received two large boxes in the mail from my former employer. In each was an assortment of odds and ends that had been in my work space. Day after day, I was surrounded by these things…
In the multiple sclerosis system, a chronic disease affects two separate yet equally important groups; the brain and the spinal cord. Because of this, often it’s hard to tell the difference between MS and non-MS related events. This is one of those stories. Dun dun.PROLOGUE
When is being tired not just being tired? Often, in the world of MS, it’s hard to exactly know where the tired ends and the MS begins. Am I exhausted from MS fatigue or did I just not get enough rest the night before? Did I not sleep well because of some environmental factor (room too warm, kiddos waking up during the night) or because one of my regular MS-related ailments (pain, spasticity) kept me up? Sometimes, the mystery ailment better resembles Stephen King novel than procedural drama, but the clues remain ambiguous and the conclusion might never be written...
I don't know if we each have a destiny, or if we're all just floating around accidental-like on a breeze, but I, I think maybe it's both.
The other day, as I watched my IVIG medicine slowly drip, drip, drip into my body, I had a thought. “I wonder how many millions of events had to occur – exactly as they did – to bring me and my wife, Angela, together?”
The love of my life had just left the infusion suite after dropping by for a visit on her way to work and it was a wonder to me how lucky I was – we both were – to find each other and to be blessed with our two beautiful children and so much happiness...
Every adolescent boy has a different answer to the age-old question, “What do you want to do with your life?”
But boys grow into men and some of their dreams, although never forgotten, adjust to new realities. I might impress my 6-year-old son with how far I can throw a football, but NFL material I am not (and never was). I’m not really a fan of Oreo cookies anymore and the idea of running my own pizza joint lost most of its luster many years ago.
Growing up in the 80s, family trips to the local shopping mall usually involved my brothers and I heading to the arcade and playing video games until our parents gave us the sign that it was time to go. For this ten year old, it was sweet music to my ears as the fresh quarters rattled around in the coin dispenser, the converted dollar bills courtesy of Mom and Dad. My time and quarters were spent playing mostly sports-themed games, as not much else really piqued my interest. After I spent my last quarter, I’d wander over to the game “Gauntlet,” not to play, but to watch for a few minutes until it was officially time to leave. “Gauntlet” was very different from “Tecmo Bowl” and the other sports games I usually gravitated toward; rather than trying to beat another team by scoring more points, it was about pure survival.My eyes were always drawn to each player’s score, highlighted in big red numbers, usually rapidly descending as players struggled to complete the various levels. There was one memorable phrase I remember from the game: “Your life force is running out!” It was uttered by the computer narrator whenever a player’s health had decreased to a threatening level. As I watched, I’d try to predict in my head at what precise moment the computer would start providing this ominous and repetitive alert.SO TIRED OF BEING TIREDFor those with MS, energy is a prized resource, available only in limited quantities. Read any medical definition of multiple sclerosis and “fatigue” will be listed as one of the more common symptoms. The quotes are an intentional and caustic nod to this word; personally, I find the term “fatigue” lacking in accuracy and descriptive affect on the realities of living with MS.Webster’s defines fatigue as “weariness or exhaustion from labor, exertion or stress,” but with MS no exertion is required to enter a state of exhaustion; rather, weariness is constant - a baseline. Normal, daily routines, like showering and shaving, are obstacles to be planned for and managed, all in the name of preserving my energy. Even on my best days, I regularly feel the dark cloud of exhaustion hovering, tempting me to surrender and retreat to a dark and quiet spot, isolated from others. One moment I’m reading a story to my children or enjoying a dinner with my wife … then suddenly, my energy has vanished, my bones feel cold and achy, my mind is hazy, unable to think clearly. Often, I worry that my children think I’m ignoring them, my friends and family feel I’m disinterested, or new acquaintances wonder why I seem so tired and unengaged.MY OWN GAUNTLETBut what if I had my own colored indicator, floating above my head, clearly identifying my energy level? My “life force” would blink in big numbers, and a friendly alert would go off when a low level was reached, notifying me and others that my energy was tapped out or, as with most days, surviving on fumes. Understandably, some might hesitate to broadcast their personal battle, a scarlet MS for all to see. But it would also be a portal for seeing through the MS looking glass, easing confusion and misunderstanding, highlighting our strength in battle and a wonderful way to educate ourselves and others on the moment-by-moment struggle we face against our own bodies.
“So often times it happens that we live our lives in chainsAnd we never even know we have the key.”-Eagles, “Already Gone”When I was younger, I couldn’t wait for the day I finished high school. One of my clearest memories of elementary school was sitting in third grade, daydreaming about graduation; when life would be about playing games with friends all day and eating Oreo cookies whenever I wanted – oh yes, I was confident that was what the future held.At the time, college was beyond my comprehension. What I did understand was that I had a long way to go until I reached the magical 12th grade. I couldn’t wait for when my days weren’t spent in a classroom, adhering to schedules with regulated times for arrival, departure and even eating. With my teacher’s lesson plan playing as background music, I sat at my desk, counting fingers and realized – nine … more … years. My unofficial countdown had begun. FATHER KNOWS BESTSo you can imagine the sadness I felt when my Dad declared, “You’ll never stop going to school”. I now know he didn’t mean it literally, with teachers, tests and report cards, but rather that I’d always be learning and adjusting to new situations in the classroom of life. To hear this as a little boy was a damper to my graduation dreams, but they were also prescient words of wisdom.Entering the workforce, getting married, becoming a first time parent - all these special events are celebrated, but they also mark the beginning of a journey that involves learning new subjects, reciting memorized facts when required and yes, being tested … often when you least expect it. The printer breaking down before your first big presentation at work or comforting a sick child in the middle of the night, much like a pop quiz in Calculus, are just things that you really can’t prepare for. Learning to live and adjust to being a husband, father, son and friend after my diagnosis of MS is one of those tests, although it sometimes feels more like detention and, unlike third grade, there is no countdown for that last day of school; my illness isn’t going away and there is no final bell that will ring to signify a new life, free of the chains of MS. But this story isn’t about that. It’s about how within those chains I discovered that class was, indeed, still in session.COUNTING THE NOWAfter I started my first professional job, it wasn’t long before I was pressing the fast-forward button again, imagining life in retirement: maybe traveling the country to see a game at every baseball stadium or just relaxing, with my wife, in a beach house somewhere.I think striving for that future life is something common among many of us. The visions we have might be different, but the overriding theme is similar – surviving the now with the help of our utopian dreams guiding us through daily twists, turns, hills and valleys. And for many, this works … to a point. But I think something very important gets lost – enjoying, even relishing, today. Instead, “the now” becomes the minutiae of our daily lives – it’s the necessary evil we begrudgingly accept, easily frustrated by challenges we believe to be bigger than they really are, worrying over things that may, but probably won’t happen. Looking back, I realize how many of those self-inflicted chains I created, all in the name of striving for that next level, where the proverbial grass would be greener and nirvana could be achieved. NEW DAY’S RESOLUTION Over the past few weeks my vision, already diminished in my right eye, has been flickering on and off and I’m left wondering if it’s a momentary setback or the start of yet another new normal. I don’t know if tomorrow I’ll still be able to see the beauty of my family, or even the words that I type at this computer. Beneath this reality is a vital lesson taught everyday at the University of MS - there are no future guarantees. My Dad was right, you really do never stop going to school and through my continuous education I see the world from a new, improved, perspective. The math is different now and my countdowns have been upgraded – free of self-inflicted chains - to an ode for each new day, full of possibilities and wonder.
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.
“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 DAYSAn 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 DREAMIn 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 TIMEBut 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 MOMENTSHaving 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.