KRAVITZ: On Wes Shealey, and ALS, and a voice that will not be silenced

Wes Shealey
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Bob Kravitz

The kids thought their dad was drunk. At least that’s how they joked, Brittney(24) and Ben (18) did, knowing their father, Wes Shealey, doesn’t consume a drop of alcohol. But how else could you explain why Wes was suddenly falling during his long runs outside, why he was tripping when he was in his Fishers home? 

"C’mon, dad," they joked. "Is there something you’re not telling us? You hitting the bottle now?"

Now it is several months later, and I’m sitting on the step of a statue in Military Park, talking with Brittney, an IUPUI nursing student with one year left in her studies. Like her mom, Jennifer, she works as a nurse at Community North. Like her mom, she is incredibly strong. But now her eyes begin to well up, and she remembers back to those funny jabs she and her brother tossed at their beloved father, and she feels a terrible tinge of regret.

"We had no idea," she said, her eyes pointed toward the gathering crowd on this early fall morning. "We just thought…" Her voice trailed off.

At this point, it should be mentioned why we’re here on this recent Saturday, why Shealey’s family and all of his many friends are gathering on the grounds just outside of the NCAA corporate offices: This is the ALS Walk. And there are more than 100 good people wearing racing bibs inscribed with the words "Walking with Wes."

Turned out, Wes Shealey wasn’t drunk, although everybody who knows him realizes that would never be the case. Turned out, Shealey was diagnosed with this spring with ALS (or Amyotrophic Lateral Sclerosis, or Lou Gehrig’s Disease). He’s been told it’s a slower-progressing form of the disease, five years or so, but that’s of limited solace. In time, this despicable disease will take away all of his physical faculties, his legs and his arms, his ability to speak and eat on his own and even breathe on his own. Eventually, it will take his life. They are making advances in the field of finding a drug that will stop ALS in its tracks, but that time is still somewhere in the future – probably too late to help Wes Shealey or the countless people who suffer from the disease.

"I was at a wedding recently and they had the father-daughter dance," Brittney is telling me. Again, the tears come. How couldn’t they? "I didn’t want to be rude, but I had to excuse myself, go off to the bathroom and take some deep breaths."

As the son of a mother who passed away from ALS in 2007, I know this. ALS takes away almost everything, but it does not take away your mind. It does not take away your spirit. It does not take away your fight or your dignity. I can still remember the long, loving letters my mom used to write to me and my brother, using only her eyes to painstakingly type out each letter. I have them still.

Wes Shealey will fight this despicable disease with honor and a smile and the same dedication he put into his job, his family, his adult softball career and his running.  His family – Jennifer, his wife, and his two children, Brittney and Ben – will be his angels. ALS always seems to inflict itself on the strongest members of our tribe. But dammit all...

Dammit all…

**********************************************

This was the night before Wes Shealey’s first ALS Walk, and he was wearing a broad smile and offering a hearty handshake. We were standing outside the elevator at the Fishers’ High School football field’s press box, where Shealey is the public address announcer.

As he approaches, I watch closely, and honestly, if I didn’t know his story, I wouldn’t know. He walks a bit haltingly, with a slight limp, but it’s almost imperceptible. He will tell me later that he walks with braces on both lower legs and there are some other developing symptoms, but his disease is still in its early throes. For now, he is still in his glory, still working at ASI, an architectural signage firm, still doing the thing he truly loves, working as the PA Announcer at Fishers High School sports.

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I’m watching him do his work. I watch him work the iPad, tapping on the pre-chosen pre-game music, shaking his head like a man who would just as soon be listening to The Who. I listen as his voice is growling deeply – THIRRRRRRD Down! – when visiting Avon High School is up against it. Fishers scores a touchdown on a blocked punt and a return for a score, and Shealey’s voice is booming, filling the joint, and he takes time to high five a man next to him in the press box.

"Doing this means everything to me," Wes is saying as we sit down in the press box before the game. A cool summer breeze is blowing through the open windows. A perfect night for football. "It’s a way for me to stay connected with the family I have here at the school. PA announcing is a passion and it’s something that hasn’t been taken away from me – yet. As long as I can keep doing it, I’m going to keep doing it."

For now, the disease has not taken too terrible a toll. He was diagnosed this spring. If you didn’t know – and most of the people in the press box this night don’t know, continually asking, "Why are you writing about Wes?" – but he knows. His family knows. And, well, eventually everybody will know. ALS spares nobody.

"At this point, I have to wear leg braces," he says, then lifts his pants legs to show me the metal contraptions. "I need to wear them for falling. I used to run a lot. Half marathons. And that’s where the symptoms first came to light. I was running one day and I hit a wall around nine miles and I couldn’t go any further. Then during training for another half-marathon, I found myself dragging my left foot. And it kept getting worse and worse, falling down a lot. I went to a podiatrist first because I thought it was a running injuring. They thought it was tendonitis."

"Then I was sent to a neurologist. She (the doctor) diagnosed me for a cervical test, but then she looked at my MRI and said, 'No, there’s something more going on here.’ Then in March I was referred to a general neurologist and they did an EMG and brain MRI, which came back abnormal, and that’s when I first heard the words 'ALS.'"

He remembers the first doctor he saw, how she hemmed and hawed, said it could be this or that or the other thing, or it might be – oh, by the way – ALS.

"Then I got to the ALS specialist and heard it was probably ALS, and the writing was on the wall. Total shock, denial, devastation, you name it," Wes says. "Then I went to the ALS clinic and was told there was about a three percent chance it was anything except for ALS. She treated me for a couple of other things – I had some IVIG [Intravenous immunoglobulin] transfusions, and they said I would have drastic results if it wasn’t the case. Well, nothing improved, and that’s when we heard it."

ALS

His wife, Jennifer, is in the medical field, the maternity ward, and was actually hoping it was something like Multiple Sclerosis, which is no joyride, either. But as she went with Wes to one doctor after another, she, too, came to understand it was the worst possible outcome. She was the one who came with the pad and the pen, asked all the questions, but she never got the answers she’d hoped to get. Wes? He knew. Because his body was telling him. There were the leg problems. There was growing atrophy in his shoulders and arms. With each passing week, there’s something new, something awful.

"It was probably worse on her than it was on me," Wes said. "It was something she had to come to grips with."

Which is what Wes Shealey is doing now, trying to make sense of such a mean disease. As we talk, his smile is broad and bright. He is a robust man of 52, a man who played a lot of baseball and softball, who coached baseball, who got into running with his wife, also a mini-marathoner. Then his countenance changes. There is sadness. How couldn’t there be?

"I consider myself a man of faith; I’m an elder in my church (New Hope Presbyterian) and we all go," he said. "But it took me a while, as you can imagine. I was in this whole thing - of all the things I won’t be able to do any longer. That was my whole focus. I won’t be able to ride my bike, can’t swing a baseball bat, can’t run any longer. I know God has a purpose for all of us and I have an opportunity now to raise awareness, but it took me some time. I have a very strong family, a strong family here at Fishers and my church family, but there was a lot of 'Why me, God??’ But I got to thinking about it, and while I won’t be able to run any longer, now I get to watch my wife and daughter compete. I’ll be coaching my final baseball game in the Sunday fall ball league, but while I can’t coach, my son begins his coaching career next year and I can watch him. And doing things like what we’re going to do tomorrow, participate in the ALS walk, talk to people around town, share my story with them. I know how this ends. I do. But I’m going to keep living the best life I can live under the circumstances."

Get the facts about ALS here.

"I’m not going to lie: My biggest concern is being a burden to the caregivers in my life, especially my wife, my daughter, my son. I still can’t help but worry. We’ve talked about going to support groups, but neither one of us is quite ready for that just yet. We’d go and see people further along in their progression and they might not be there much longer, so we’re easing into that. Thank God there are still a lot of things I CAN do. Maybe in time, but we’re not ready for that yet. But sure, I’m worried. I’m worried for my wife and kids. I worry about the things that are approaching, the wheelchair accessible vans, the modifications to the house. It drives me crazy because I’ve always been a do it yourselfer, but I can’t do that anymore."

"I tried to fix the belt in my car last night and I couldn’t do it," he said. "I just didn’t have the strength to do it. I’ve already got atrophy in my shoulders. I feel it in my left hand. A lot of weakness in the legs. Walking has become difficult. If it gets under 60 degrees, I struggle. I’ve had some issues with my throat as far as coughing, so I use a cough-assist machine twice a day. It’s a struggle, but I’m dealing with it the only way I know how. And thank God for my family and the people of Fishers, and my church family, who’ve done so much to help."

If there is any good news – to the extent that ALS ever provides good news – it’s that his doctors tell him it’s a slower-progressing form of the disease. Five years. He hopes.

I ask him, tentatively, if he’s got a list of things he wants to do during the too-short time he’s got left. I feel sheepish about asking, almost maudlin, but I remember having these conversations with my mother, who took cruises and traveled the world, with the help of my angelic father.

"When we got married, we never really took a honeymoon," he says. "She doesn’t know I want to take a honeymoon before things begin to really deteriorate. Someplace warm and sunny, you know?"

Well. Now she knows.

**********************************************

As Wes introduces the starting lineups for Fishers High School, his wife, Jennifer, takes her seat on the bleachers right outside the press box. Her son, Ben, a freshman, at the University of Cincinnati, joins her.

I’m supposed to be interviewing her, and I get around to it, but I feel compelled to offer a little bit of my life experience as a son who saw his parents deal with his mother’s ALS.

"I know you’re a nurse and you want to take care of everybody," I tell her. "But don’t be too proud to get help. When the time comes, bring in somebody to help you. A couple of hours a day, then 24 hours a day. Because I saw my father try to do everything on his own, and it darned near ruined him. You need to live your life. Your kids need to lives their lives. You don’t do him any good if you’re exhausted and frustrated."

She nods her head in agreement.

Her family friend, Wes’ best friend from baseball, Matt Cherry, understands all of this. "She’s already Superwoman," he says. "But we’ve had this discussion."

Jennifer knows things will get tough, really tough. But she says she is ready – ready to care for her husband as the illness progresses, ready to get help when the time comes.

Get the facts about ALS here

"I’ve spoken with some people who have family members with ALS," she says over the din of the Fishers football crowd. "I think we know what’s coming. But it’s going to be hard. I’m a nurse. I take care of people, you know? I always want to fight things and fix things, but I’ve come to understand this really isn’t something you can fix, so it’s very frustrating. I understand it, but it’s still hard to understand there’s nothing you can do about it and all you can do about it is live every day. That, and have faith. If you didn’t have faith and that strength, I think you’d just crumble."

As a nurse, she knew something was wrong when Wes kept tripping and falling. But she hoped it might be from simple overuse from all the running they do together. At worst, at the very worst, she thought it might be MS.

"I remember making a comment to a nursing colleague, they were doing a cervical MRI on him and it didn’t make sense to me because everything was lower body," she said. "I started running through the things I thought it might be, and I thought, 'God forbid it’s ALS.’ But you never go to that first. You never do."

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"We were at that first neurologist in March and she alluded to this diagnosis, and we walked out saying, 'Did you hear that? Did I hear that? What did she say?'" Jennifer says. "Then in May, they decided, yes, this is what it is. There were a lot of tears, a lot of tears. It was so hard to hear. I’m thinking, 'How long do we have?’ But honestly, how long do any of us have? But it’s hard to know how to prepare because you don’t know how it’s going to progress. Nobody can really tell you. Sometimes I wake up and feel normal and I know that he doesn’t feel normal, and it hurts. You’re angry and frustrated, but I’m in a slightly better place now. Still, as time has gone on, it’s gotten harder and harder, especially when I see that he can’t do the things he’s always done for such a long time. I know he’s frustrated and I feel so much frustration for him. I was a runner and he ran with me; it was one of the things we did together. And now this changes everything."

I didn’t want to ask the question, then, but I had to ask the question, because I remember the day my father told my brother and I my mother had ALS. I wondered, "How did you tell the kids?’"

She wiped away tears. I apologized. There have been tears enough in this family, but she told me not to worry about it. But it was the toughest part.

"It was so difficult," she said quietly. "My daughter took it hard. She’s in nursing, so she understands what it all means. I can’t imagine how difficult that was for her. Our son, he’s dealing with it the way you’d expect an 18-year-old boy to handle it. He hasn’t said very much. He’s been pretty quiet about the whole thing, but that’s not surprising to me. I think it will sink in at some point, but for now…"

I remember when my father told me. The phone just went dead. What is there to say? There are just tears and an uneasy silence.

What is there to say? There is nothing to say. Except dammit. Dammit all.

**********************************************

We are back at the park, the walkers for Wes and so many hundreds of others congregating in the field. There are booths everywhere, booths that feature wheelchairs and various forms of care for those suffering from this horrific disease.

Brittney is holding up well, talking about her faith, talking about her family and how they will surely pull together through this terrible time to come.

Then she starts talking about a class she took at IUPUI. This was about a week, maybe two, after her father’s ALS diagnosis.

"We were listening to a hospice worker on death and dying, and she had just lost a patient with ALS," Brittney says, her eyes glistening again. "I was proud of myself. I took some deep breaths and held it together. I couldn’t just walk out. These are things I’m going to have to know at some point very soon. For most of the students, it was just a lecture. For me, it was my reality."

She breathes deeply. "I understand it, but it doesn’t seem real yet to me. Like I haven’t internalized it yet. Really, how do you prepare for something like this?"

I felt hopeless then, because I didn’t really have any smart answers. It’s just a never-ending challenge that a family – and, eventually, care workers – address every day. All you can do is make life as palatable as possible for those who suffer, and then keep life alive for those who are caring for the suffering.

I see Wes amongst his many friends, preparing for his walk with his family and all who came to support him. On this day, he is inspired. He wants people to understand, and what better way is there to make people understand than involve them in an awareness and fund-raising walk?

"I’m a strong person and I have faith," he is saying before he takes off. "I know what’s coming, but I believe I can take this head on and show strength, while also helping people understand more about this disease. I spoke to Butler recently and read the entire Lou Gehrig speech to them, and he talked about how lucky he was to have played with such great players and coaches, the way he was always surrounded by such good friends. That’s the way I feel. I’ve been dealt a bad hand, but I’ll deal with it the best way I possibly can."
 

I just want to keep hearing that voice. That booming, growling voice, the one telling me so much about Fishers baseball and football. I want to hear it for a very long time.

"I do, too," Jennifer is telling me. "He has so much passion for it. Every day he comes back from a game, he tells me how much he loves doing it."

Eventually, the disease will take his voice and a little bit of everything else, and there’s no getting around the hard reality of this damnable thing: Eventually it will take a man away from his wife, his children and his many friends. But listen closely while you can. Listen closely. Because whether Fishers wins or loses, Wes Shealey is determined to somehow win the best way he knows. With faith and strength and an unrelenting desire to live as good a quality of life as possible.

Still…dammit.

Dammit all.