I am a proud father of Kara, Alexa, and Luke. And a proud brother, a proud cousin, a proud uncle, a proud son...a proud friend, a proud boyfriend. A silence envelops me here, now, as I consider my life, the life I've led, the life I will lead, and the here and now-- the life I lead today. What is said of me? What will be said of me for the things I've yet to do? Although I think it was Emerson who said, "...What I must do is all that concerns me, not what the people think..." The trick is to know the "must do" part. But let me start with phrases that come to mind from those who've described me. Tough. Fair. Contrarian. Passionate. Thinker. Explorer. Dreamer. Coach. Everything is possible. Athlete. I will always be an athlete no matter the direction I take with this disease. Being an athlete is a state of mind, a way of life, a philosophy. I skied on a recent Sunday...
Skiing WAS my family growing up. It was how we spent our days and nights together--rope tows, t-bars, night skiing at Benjamin Hill with stops for hot chocolate (and fluff!) at the Tucker's, racing with red, blue, and yellow flags on bamboo gates, grilled hot-dogs, road-trips 2+ hours up and back on Saturday, Sunday...Friday...and, of course, the weekly "dentist appointments" I had at places like Benjamin Hill and King Ridge with my mother. This was how we lived. This was how we loved-- how mom and dad taught us to say YES to life. Little did I know what a critical lesson that would become to all of us, the 5 kids-- me, the youngest. And we skied and skied and skied some more, and then we coached, taught, raced in college, coached some more and now we ski just to ski-- to go home to that magical place that will never ever go away, that will always be there, on any and every slope, any vintage ski poster, any thought of being on the slopes...forever home.
Physically, it is the combination of balance, strength, physics and rhythm that yields dynamic, arc'd turns that give the skier a piercing sense of vitality and spirit...speeding down the face of a mountain; a feeling like no other, unique to the sport as is the feeling of surfing on the face of a wave-- at once spiritual, physical, and fleeting. Until the next turn; until the next wave.
Primary Lateral Sclerosis (PLS) attacks balance, strength, and coordination-- a rare neuro-muscular disease of the cerebellum. PLS is a motor neuron disease that causes muscle nerve cells to slowly break down, causing progressive weakness in voluntary muscles, such as those used to control your legs, arms, hands, fingers and tongue. How does it feel? Like every step is on a tight-rope 100 feet above the ground; like trying to move in quicksand; like multi-tasking is a death-wish; like people are judging you-- thinking you are drunk all the time; like I have no rhythm (I do! You should see me dance in my mind!); like making it safely to the car is cause for "yeh baby- I crushed that!" It feels like no one understands; like I'm always inconveniencing people; it's lonely; like no one knows about my daily life and the struggle to complete simple tasks; like some people don't care-- people I want to care. And...it feels like I've been given a gift...a gift that, like a flower, is about to bloom into its season. How else would I feel the love and care of an 8-year old as she holds my hand as she escorts me down stairs? How else would I feel the care of a perfect stranger as our eyes meet as I struggle to cross the street? How else would I feel care from perfect strangers, and from friends whom I prod to the uncomfortable space? How else would I get the courage to confront my fear of baring my soul, my fear of never being really known? Yes, I do feel blessed. I do feel lucky.
I have lost most of my balance-- falling is a constant risk; I have lost much of my strength. I walk sluggishly and with the help of a cane. I fall. I am clumsy. I slur my speech. I walk like I am drunk. (PLS affects the cerebellum, which is the same part of the brain affected by alcohol.) I've recently considered a career as an actor in the role of the drunkard! Someone told me I've been hit where it hurts me the most-- the physical, the balance, the strength, the sources of much of my joy in life, and the ability to live the active lifestyle that has partially defined me until now. But, I do ski, and I do "play" tennis with Luke. And when I couldn't find anyone to go skiing with me recently, which is much safer for me, I went alone. And I did it. I did it! No, I don't ski like I used to, or where I used to, but those things don't matter.
Sometimes at the top of the slope, I envision the start of the Strief, a legendary World Cup downhill ski race in Kitzbuhel, Austria (https://hahnenkamm.com/en/racetracks/the-streif-downhill/). I see sections of the course. This is my moment; this is my time! The joy I feel is the same.
PLS may take the ability to do certain things away from me, but there are some things that it can never take away from me-- that I will not let it take away from me. So when I say I am an athlete, that's what I mean-- I will always be an athlete.
How did I get here? Surrounded by loving parents and siblings, and the youngest of 5 children, I grew up in a warm household with home-cooked meals, home-made bread, a dad who got out of the car from work and immediately started playing catch with me with a baseball or football. That was in the day when people actually dressed up for work; my dad wore a suit every day. Spoiled a bit, the occasional renegade, I loved my life. Hiking, skiing, tennis, pick-up games of football, baseball, basketball, dogs, riding on the tailgate of our Buick station wagon, snowshoeing, cross-country skiing down the street in snow storms, building snow forts and fires inside them with hot chocolate (and fluff!)...this was our joy.
There were the tragedies. Dickie, 11 and the oldest, drowned in a pool when he had a seizure and no one noticed. I was 2. When I was 18, Dave was 22 when he died of cancer after being diagnosed 6 months prior. I was in my first year of college. I got through those days and, in some ways--I'm sure more than I know, I continue to try to deal with those events even now as best I can-- with the love, hope, faith, perseverance, and joie de vivre that my parents imparted to us all. And so it was through college, the ski team, tennis team, then on to teach Math and coach at a ski racing academy, back to business school...(Is this really as "blah-blah" as it sounds to me, and as my 8-year old friend would say???) Then to a corporate job in Boston, then start-ups, then working on my own as a business development consultant. Staying active, I started bike racing, along with trail racing, snowshoe racing, a couple cycling trips to Italy, blah blah...you get the idea. I struggled, as I do today, to find meaning in my work, but fueled my restless soul by following my passions. Now married and divorced twice with 3 children from my second marriage, I live alone in a town not far from my children.
I prefer to workout outside and consider the world my gym. I would often take my interval workouts, for example, to rugged, inspirational places. I would carry my kettlebells a few hundred meters to a forested water's edge that would serve as my workout venue. I loved it-- creating it, setting it up, in it, after it. It was as much, if not more, mental than physical. A major storm with 2 feet of new snow, winds and white-out conditions? Perfect time for a run (slog) in the hilly woods. I was living!
One particular workout I loved was one of the hardest. At a local college that had stadium stairs that overlook a beautiful track and majestic woods. I would hop up the 22 steps on one leg, recover for 30 seconds as I circled back down and around, and repeat 16 times...then the other leg. The hotter the better, or hard rain, or blazing sun...the elements. It was during this workout about 4.5 years ago when I noticed the slightest hesitation with my right leg...
That day seems like decades ago. Two broken elbows, broken hand, broken collarbone since that day. The falls, progressive loss of balance and coordination, slurred speech, the cane. The path to diagnosis-- first Parkinson's, then Spinal Cerebellum Ataxia and now Primary Lateral Sclerosis; 4 neurologists, endless tests and doctor visits, blah blah...But now I know what I'm dealing with, sort of, because PLS affects everyone differently, which is good from my perspective, because everything and anything is now a possibility! I can stop it. It will reverse course. Nothing is certain. My vivid dreams of walking, running, and skiing as I used to will become real. My stem cell infusion will finally work. My creative trial and error workout routines will reverse the disease, and I will help others with PLS live the lives they want. Maybe...just maybe...
This is where I am today. And this picture is where I was yesterday in a literal sense...
We're giving it a little bit of that UNH Wildcat spirit after a walk around campus--apologies to the wildcat for pushing her out of the picture!
I welcome and encourage questions, thoughts, and reflections I may have sparked in you. What is my fear in asking for them? I am learning that I have a great fear of rejection...