Ten Years Ago Today, ALS Took My Father

Ten years ago today, ALS took my father, Dave McConnell.  He was 75 years old.  He battled ALS for almost 14 years, and my mother was his primary caregiver.  That morning, she tells me that as she had helped him with his morning ritual, he said, “Thank you.”  Then, he closed his eyes for the last time.  It was over.

It was the day that we all knew was coming, but all of us were still caught off-guard.  Anyone who has dealt with ALS knows the outcome, but they don’t know when it will come or how agonizing the end will be.  Not knowing is just one element of the overwhelming feeling of powerlessness that ALS leaves on your doorstep.  My father’s simple and characteristic departure was far less dreadful than we had feared, but the feeling of powerlessness was profound.

My father and I were always close.  As I think of him now, it is his sense of humor that survives him.  He had kind of a smart-ass, sarcastic, I-think-he’s-kidding-but-I’m-not-sure sense of humor that entertained him as much as it entertained those around him.  It was always spontaneous, was often delightfully off-color, but was never at someone else’s expense.  Everyone who knew him – and everybody knew him – loved being around him.

When he was diagnosed with ALS, all of us were pretty clueless about the disease beyond vaguely knowing about the baseball player for which the disease takes its name.  “Actuarially, within three to five years, I will suffocate or starve to death,” he told us in a matter-of-fact tone.  My first and most crushing thought was disappointment that, during those three to five years, my kids wouldn’t be old enough to really get to know him.  They wouldn’t know what he thought was important, and they wouldn’t know his sense of humor.  As it turned out, he far out-lived the original prognosis, and my children really were able to receive that much.  They will always remember him in that dreadful wheelchair, but at least they will remember the important stuff. 

Every person I have met whose life has been touched by ALS makes reference to that feeling of powerlessness.  People articulate it differently, but it is what they feel and with which they try to reconcile.  The cascading unfairness of the disease makes it something that is irreconcilable, so the frustration builds.  People’s reaction to that frustration varies.  Some grieve their loved one, and move on with their lives.  Others grieve and support ALS charities; for some, the support to ALS charities becomes a lifelong mission. 

For us, we swim.

Oh, we did all that other stuff, too.  We grieved, we cried, and we laughed at the stories that he had told and the ones we knew would make him howl.  Like everyone, we wanted to do more, so we started using swimming to support ALS because it was the best way we knew to defy it.  As a neurodegenerative disease, ALS slowly robs the sufferer of the ability to use their muscles.  Swimmers, on the other hand, use all of their muscles to power themselves through the unnatural medium of the water and they need to be able to breathe deeply.  Because of that, swimming is the perfect nose-thumb and bird-flip to ALS. 

We swim because we can.  We swim because they cannot.  

ALS is highly unpredictable.  Often, the larger muscles of the arms and legs are stricken first, but the muscles required for breathing and digesting are often afflicted and rendered useless.  One of the special and ironic cruelties of ALS is the people who are diagnosed are the ones for whom the loss of those muscle groups is most associated with their own gifts.  The runner who can no longer walk.  The singer that can’t utter a word. 

In my father’s case, it was a former three-sport athlete who found himself in a wheelchair and became unable to lift his arms to even feed himself.  As I was growing up, he was a practicing veterinarian, and he used his physical power every day.  When I was very young, he worked with a lot of horses and cattle, and I remember him moving reluctant dairy cows with just a lean of his shoulder.  In later years, it was all “small” animals, though the Great Danes and St. Bernards that he lifted onto examining tables were hardly petite.  Every little boy grows up thinking that his dad is the strongest guy in the world; in my case, it was really true.

After ALS exacted its price, the feeling of powerlessness continued.  We wanted to do something, knowing that other families were watching the same slow-motion shipwreck that we had witnessed.  For me, swimming had been a constant; from the time I started as a six-year old with our local Park District swim team, through my years swimming for the University of Illinois, swimming had always been part of my life.  The more we thought of it, the more we realized that the stark contrast between ALS and swimming was a perfect fit.  

The swimming that we initially set about to accomplish has been far exceed by the reality.  We borrowed the acronym of ALS to create “A Long Swim,” and it has taken us to swims like the English Channel, the Catalina Channel, Tampa Bay, and around the island of Manhattan in New York.  A Long Swim has hosted some lake swims that have attracted more than 250 swimmers.  In the process, we have raised more than $350,000 for ALS research that has made A Long Swim into one of the top open water swims for charity in history.  

We started A Long Swim after my dad died, so he never saw what we were up to.  The irony of it – almost in the sarcastic commentary that he would make – is that distance swimming was the most boring thing he could think of.  “What’s next, competitive paint-drying?” he said after suffering as a spectator through a 1,000 freestyle when I was in college.  If he were here, I think he would tease us about it, and he would make jokes about it, but I think he would be really pleased.  No matter how boring he thought it was, he would be fiercely proud of us for getting out there and doing something – anything – about something for which we felt so passionate.

Today, the A Long Swim team finds itself on the Island of Hawaii, waiting for the opportunity to begin our biggest challenge yet.  For two years, we have been training for a swim across the Ka’iwi Channel, the twenty-seven mile channel that separates Molokai from Oahu.  Of all the things that went into the preparation for this swim, one of the hundreds of things that we couldn’t anticipate or control is Tropical Storm Darby that is roaring through the Hawaiian Islands right now.  Darby has been downgraded from a hurricane, but for Midwesterners, even tropical storm numbers like 65-knot winds and 10-15 inches of rain are quite a show of Mother Nature’s muscle.  The aftermath of the storm (and storms Esther and Frank right behind Darby) may be such that the Ka’iwi Channel cannot be safely swum right now. 

If that is the outcome, we will be disappointed but we will not be deterred.  A Long Swim is bigger than any single swim, including the Ka’iwi Channel.  Storms don’t last forever and ALS doesn’t have to either. 

Dave McConnell, we miss you like crazy, but are glad that you left behind your sense of humor.  This one’s for you.

(Written by Doug McConnell, Founder of A Long Swim.) 

To donate to ALS Research through www.ALongSwim.org click here. 

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