35Prospect.org

First, why a website?  

To reflect and memorialize the good.   It's my digital scrapbook or as a good friend described it after a preview, "my thank you letter to life."  Plus, most people are afraid to ask about the disease, my symptoms, my outlook, etc.  Can't blame them but I, the elephant in the room, want to talk. I want to share and provide insight to those who might be curious as to what it's like inside this disease. This gives me an outlet. At this stage of my ALS, I feel like a squirrel hit by a car but not killed, only injured. Severely injured but still able to scamper off to round up all the good in my life, all the nuggets and acorns, and put them in a safe place while I still can where my loved ones will find them after I'm gone. Maybe it'll help nourish them as time fades or, at a minimum, just remind them that they were the good in my life. That’s what I'm doing here. Gathering my acorns and storing them. It's selfish but very important that I take inventory and enjoy. Sorting through the chapters of my life is therapeutic and helps me face the beast head on.  I started writing this via dictation beginning in October 2021.  It is now the spring of 2022 and I am wheelchair-bound. I wasn't when I started. I can still use my voice to dictate but each day gets more difficult. On the one hand, what I've written here is a snapshot of where I stand today. My condition will worsen and I will not have the ability to update. I knew that when I first decided to write.  So I've tried to choose every word carefully such that anyone reading will get a sense of my heart, not just in this moment, but for a lifetime.  A good and fulfilled lifetime. If I'm unable to update this again, this is me. Today, yesterday, and forever.

So, ALS. What is it?

It sucks. Amyotrophic Lateral Sclerosis, aka, Lou Gehrig disease. No known cause or cure. A man eater that cuts off nourishment to the muscles. It leaves the mind but takes the body and accelerates the aging process tenfold. In Mitch Albom’s true story, “Tuesdays with Morrie”, Morrie Schwartz is the retired college professor dying of ALS who describes the disease as a “lit candle that melts your nerves and leaves your body a pile of wax." Your soul, he says, is awake, though your body is completely deadened.” 

I couldn't have said it better.

At the start, you feel weakness. In my case, it began in April of 2019 with the neck, shoulders, hands, fingers, and then the legs. Minor symptoms at first. I was still running 15-18 miles per week back then. Over time, the shit starts to hit the fan. Runs quickly turn to walks. You lose your balance and unexpected falls become the norm. Your 12,000 steps a day drop to 1,200 and soon to 120 in the span of one summer. Your nerves start to jump uncontrollably, both under the skin and eventually visible to others. You lose the dexterity to tie your shoes, buckle a belt, hold a fork or a spoon, open a jar, pick up a napkin, hold your phone, use a keyboard or even hold a pen to sign your name. Your eyes and speech become slow. You are fatigued morning, noon, and night and getting in or out of bed is a two-person job. At night, you lose the strength to pull up your covers or roll over.  So you learn to sleep in one position, on your back. You cramp in the cockpit. Your body clams up and contorts in spasm throughout the night. Every night. Your sleep is broken. Your hands clasp and unclasp on their own timing and terms and your teeth clench without warning. You bite your lip as you sleep, often in the same spot every night. I take pills to stave off anxiety and muscle relaxers for spasms but they don't help much. I could take Riluzole but it neither cures nor relieves symptoms.  Just prolongs the inevitable death sentence by about six months.  No thanks. Not for me. ALS is gonna do its thing regardless. It's the flame and I'm the candle. 

All the while, your mind is there. Thinking. Absorbing. Remembering. Emoting. 

The thoughts, jokes and insights are there, wanting to join the conversation. But the words are slow and faint to come. Much like anxiety I feel, the words are trapped in my body and, as time passes, the pressure builds with no physical outlet. No more runs or hikes or bike rides or kettle bell workouts. No way to blow off steam. That’s where I am today. Steam trapped in a pressure cooker with limbs that want to move but can't. I'm now confined to a wheelchair. Eventually, I will not be able to swallow or breathe on my own. If I so choose, they will fit me with a feeding tube and ventilator. Machines could take over and allow me to “live” forever.  A guy on tubes in a bed? Is that even being “alive”? A thought I wrestle with, if only because there's no cure. Is that fair to my family, to put those daily responsibilities, worries and risks on them knowing full well there's no cure? To put that visual forever in their minds and hearts? To put the burden of when to pull the plug solely on them? Just another tug-of-war between my heart and head. 

Anyway, we march on. No choice. My remaining days, weeks, months, years will be different. Some will look at me with pity. Others in horror. Some will wrongly assume my brain is shot. Speak “at” me in loud tones hoping their words penetrate through the fog they see. Some will gush over me, wanting to slay my dragons and still others will walk by in silence, or tears, not knowing the words to say. It's already happened a bit. All legitimate reactions. It's a bitch, whether you're living it, caring for it, observing it, or just around it. 

But here's the unexpected silver lining: it's helped me rediscover all the good. A reminder to look for the good. Only the good. The good that got me this far. And the good in the moment, the day, and the circumstance. Need to nourish myself with the good. No more worrying about the future. Doing so can be daunting and sap me of energy I don’t have. The future is here. As I've started to clear my mind of the clutter and focus on the good, I realize this:  I've had it all. 

I could be alone but I'm not. I could be homeless, jobless, or penniless, but I'm not. I could’ve succumbed to a near death experience in my 30s but didn’t (true story).  I could’ve lived a sedentary life or a life of regrets but didn't. I've tried to be a reliable husband, father, brother, uncle, son and friend. Flawed for sure. But reliable, I hope. I've been the person I wanted to be. I've volunteered for causes I deeply believe in, was a Big Brother for 4 years to a wonderful kid named Timothy (now an M.D.), completed marathons, triathlons, and other competitions that have tested the limits of my mind, spirit, and this once strong body. I've been to five different countries, the Mayan ruins, been on an African safari, skied black diamonds, been to a rain forest, rock- climbed, hiked mountains, snorkeled the lagoons of Mexico, dove in the tropics to an underwater plane wreck, chucked a javelin and pole vaulted my way to state finals, and have swum in three different oceans. I was the first in my family to go to college, paid my own way, played collegiate soccer, graduated with honors and have since enjoyed the stability of a 35+ year career. I lived to see the Red Sox break the curse of the Bambino, something my grandfather longed for in his 79 years but never experienced. Was a Harry Chapin groupie, inspiring me to learn guitar and piano and ultimately write a diary full of songs, poems, stories, sayings and other thoughts. Hell, I even once had a private lunch with my baseball hero, Carl Yastrzemski.  Still have the Polaroid. No, I didn't solve world hunger or cure the incurable. Not even close. What I'm saying is this: ALS made me take inventory in a way I've never done before. And what I've learned is that I've taken for granted a pretty damn good life. No regrets. Just grateful I've been given this opportunity to reflect, enjoy and realize how lucky I've been.

I am nourished by the good in my past. And I am nourished by family.

My wife and soulmate of 31+ years. Ann Leigh, my lighthouse in this storm. The pain I am causing her is unimaginable. Like me, she didn't ask for this. She keeps a brave face and tries hard to shield me from her pain and frustration. My deepest fear is that these few ALS years will be her lasting memory of me, of us, thereby overshadowing all the laughs, good times and goals we achieved together. The disease is that draining on us both if we allow it. Our love for each other is bottomless and unbreakable but ALS sure likes to tug at the threads that have bound us together all these years. We have miscommunications and test each other's nerves and patience at times. We are both strong willed but always had the luxury of giving each other space we need to temper flare ups. But, through no fault of our own, that space is gone. ALS has a way of doing that. I'm confined because of the disease in my body and she is now confined because of me. We're both trapped by this thing. As such, flare ups happen more regularly and we're having to learn how to adjust. That said, I'd be lost without her on every level. She is there for me morning, noon, and night, 365, 24/7. Feeding me, washing me, brushing my teeth, putting up with my frustrations and consoling me. She is constantly on the phone talking to doctors, therapists and others always advocating for me. She sits patiently by my side at 3am as I wait out my spasms, sometimes for hours. Unfortunately for her, I'm still a feisty, OCD pain in the ass. Only now, I'm a helpless pain in the ass.  One who can no longer do but only ask. Not at all how we knew me.  Well, to be clear, we knew me as the OCD pain in the ass but not the helpless kind. I always did for myself and despised asking for help. But no choice now in a karma-sort-of-way and, at times, my asking hurts us both.  I sometimes expect a mind-reader and, of course, she can't be a mind-reader. But, as always, we try hard to work through it. She is a godsend. 

We raised two strong, smart, funny, compassionate sons, who are and always will be the best representation of me.  In raising them, I was more of a dad than a friend to them which, at times, came at a price.  I tried to be both but finding that perfect balance is one of the great mysteries of parenting. I'm not sure they'll ever truly understand how much I admire and respect them for the men they've become. They are thinkers and care deeply about the people in their world. Need more like them on the planet.  They are good men. I wish I told them that more often. 

I was raised by a caring mother and fun-loving sister who both died too early. Without them, I'd still be an insecure child under my bed petrified of this scary world.  I'm surrounded by an extended family of in-laws, nieces, and nephews who are anything but “extended.” 

I’ve been blessed with a friend group of guys I met 40-50 years ago, some as far back as grade school.  Still get together at least once a year to this day. They - the Prudes plus a few - shaped me. There's over a dozen of us. You'd think we're like-minded but we're not. Thankfully.  We currently live in 9 different States. Our political leanings range from left to right to center and our interests and beliefs vary widely. We have jocks, brainiacs, hunters, fisherman, boat captains, believers, non-believers, introverts, extroverts, daredevils and stay-at-homers, but when we get together, we are 100% brothers in arms. We help each other, we listen, we give unsolicited advice but, all the while, we have each other's backs. Going on five decades now. Together, we experienced trials, tribulations, belly laughs, road trips, camping trips, stag parties, keg parties, concerts, weddings, divorces, births, funerals, tears, heartaches, tragedies, fights, reconciliations, parenting stories, and above all, a unique and enduring bond for the ages. A lyric I once wrote of our growing up:  "...and together we learned, in some funny ways, the difference between right and wrong."  Surreal. I wish the world got along more like our little, eclectic band of brothers.

No, I am not alone as I go through this. I am nourished by family. And, oddly, I am nourished by this circumstance in which I find myself. Why? 

Because I can sense the finish line. It's in sight. The finish line of any race crystallizes the purpose of the run. Gives you renewed focus, hindsight and the ultimate sense of accomplishment. Makes you smile. Without it, you're just spinning in the mud. Running but going nowhere in particular. It reminds you the miles were not empty. You remember every mile and step had purpose as did every decision you made, every blister, tear and drop of sweat. The finish line pulled me on a journey toward an end, a journey that took vision, planning and execution. A journey unique to me, creating my memories, achievements, failures and experiences. My blood, sweat, and tears. My own canvas. My body of work. As the late great Harry Chapin once said, "It's got to be the going, not the getting there, that's good."  And now that my race is compressed to a few remaining miles, I forget the aches, pains and blisters and instead acutely focus on all the good that got me this far. All the good that made the race worthwhile: Ann Leigh, David, Riley and our time together. The sacrifices my Mom made. My big sis. My grandparents, aunts, uncles and cousins. My in-laws, nieces and nephews. The Prudes and other close friends. The mentors, pep talkers and honest critics. The laughs. The high fives. All the music, camp outs and bon fires. Those who lifted me. Those I lifted. The early morning runs. The runs in the snow, through the woods, on the beaches and up the sides of mountains. The endorphins. The sunrises. The sights, smells, and sounds of the ocean. The sunset paddles on the Farmington. The pond hockey and snow forts. The smell of a campfire. And above all, my Mom's meatloaf.

Yes, I am nourished after all.
Even by this unfortunate circumstance. I ran the course God charted for me. It was challenging and fun. It was short but had purpose. Was fulfilling. It was good.