ALS entered our lives as a big mystery and a misdiagnosis. My dad, Barry Cotterman, was thought to have had a stroke, which then turned into having Multiple Sclerosis, which then turned into having Amyotrophic Lateral Sclerosis.

It began with his speech. He started to slur a lot, and my mom was perplexed as to why. They went to their doctor who suspected that he may have had a stroke. After numerous tests, an MS diagnosis came back. But after a short time, and more testing, the letters we didn’t want to hear were confirmed: ALS.

No one in our family, nor or friends, had ever heard of this “ALS”. Many just nodded and smiled as we told them because, like many diseases and diagnoses, others figured dad would ‘beat this thing’. How nice that would’ve been.

He hit a plateau for a long time, riding his bike mile after mile, building himself up more physically than he already was. He was always an outgoing, strong person - race car driving, water skiing, coaching soccer, everyone remarked about his physique. And in his mind, ALS wasn’t going to take that from him.

But, as this story always goes, little by little, it did.

To see your once car bumper slinging, raising three kids up by his arms, using the phrase, “You can’t hurt steel,” dad not being able to even hug his grandchildren really shifts something in you. I never could understand how he smiled through it all, and he actually helped my own internal rage by these simple words, “What is being angry going to do? It won’t take it all away, and it won’t make me better. So why be angry?” God, I miss him.

We formed an ALS Walk team called Barry’s Backers. I wrote a children’s book about ALS, my kids, and dad in which all proceeds are donated to ALS organizations. We held multiple fundraisers year after year. We were not going to let this disease take him from us.

But that’s the thing: IT WILL, and IT DOES.

After almost 10 years of living with ALS, I had to say a final goodbye to my dad. To this day, it still hits me when I want to tell him something – oh, I can’t, that’s right.

When asked by ALS TDI to say what I wanted others to know about ALS, it was only one thing: There are NO SURVIVORS with ALS. You do not BEAT IT. No ‘course of action’ is taken. There are no parades or celebrations held for those who survived ALS because sadly no one does.

 

ALS may have taken my dad’s ability to move, to speak, to feed himself, but his smile and his spirit were never taken away. I never saw him angry. He lived life as if there were no tomorrow because, for him, the here and now was far too important to not enjoy all of the moments in it – big and small. Anyone who talks to me about him all say the same thing, “He was always smiling.” My brother explained dad’s outlook best by quoting a saying: “Death smiles at us all; all we can do is smile back.” That was dad completely.

I promised him that we would someday hear the words, “ALS SURVIVOR.” Sadly, it was not in his lifetime, but I continue to carry on in his memory. I created a Community fundraiser in conjunction with ALS/TDI here in Mansfield, OH to raise money and awareness for the cause called POUND Out ALS. It consists of our local POUND Pro & Tour Crew member, Lisa McManes, holding classes, followed by our local brewery, The Phoenix Brewing Company, donating a pint of beer to each participant. Last year, at our first annual event, we raised over $3,000, which was all word of mouth and community support. We hope to raise even more this year! I also have an Instagram page called Voices For ALS, which showcases all of those businesses and individuals fighting together to give a voice to those affected.

I am my father’s daughter; I will not stop, and I will smile the whole time until I hear the words, “ALS SURVIVOR”.  And then, I will smile bigger. For Dad.