For Justyn Hosman, March 14 will always stand out in his mind.
But standing, at some point in the future, will become something he can no longer do.
Hosman, a member of the Bert Nash Center’s Homeless Outreach Team, was told on March 14 that he has ALS, or Lou Gehrig’s disease. There is no cure; the muscle degenerating disease is eventually fatal. The life expectancy for someone with ALS is two to five years.
The diagnosis came after an EMG (Electromyography) at the University of Kansas Medical Center. The test measures muscle activity in response to a nerve’s stimulation of the muscle.
“The doctor turned around and said, ‘Your suspicions are right; you have ALS.’”
Hosman, 48, had suspected he might have ALS, based on his own online research and symptoms he was experiencing.
“What happens is your muscles start to die,” he said. “Over the last year, my muscles would cramp up. It started out once or twice a week, then it got to the point it was every night. And I had muscles twitches everywhere in my body. Also, when I would play guitar, I couldn’t do the bar chords with my left hand. That’s when I started to self-diagnose.”
His suspicions proved correct. But it’s different when a doctor tells you those words.
“The truth hits you hard; it made it real,” Hosman said. “My wife was in the room with me. Once the doctor left, we just cried.”
There have been more tears.
“I grieved,” said Hosman, who has two grown children and an 8-year-old son. “Am I going to see my son graduate? How do you want to be remembered? Look at what I am going to put my wife through. There’s going to be a point where I can’t move.”
To combat the effects of ALS, Hosman takes two different muscle relaxers and has changed to eating an autoimmune paleo diet (based on meat, fish and vegetables), which helps reduce inflammation in the body.
After receiving the ALS diagnosis, Hosman, who is an Army veteran, was notified that, based on his military service, he will receive full benefits, which means all of his medical expenses will be covered. He decided to give his notice at Bert Nash and focus on spending time with his family and to be as active as he can, for as long as he can. This is his last week at Bert Nash.
“Not knowing how much longer I will be able to walk or move my arms, I decided not to work,” Hosman said. “The deciding factor was, being a veteran and having ALS, everything will be covered, including a grant to adapt our home so it’s wheelchair accessible and a grant for a new vehicle; the VA will pay to put a lift in it. I’ll be in a motorized wheelchair at some point. That’s what’s coming.”
Hosman, who has worked for years with people experiencing homelessness, has been part of the Bert Nash Homeless Outreach Team for only seven months. But he has enjoyed his time at Bert Nash.
“This is what I love doing, working with the homeless,” Hosman said. “I’ll miss it. But I got to see how those who are struggling with mental illness can receive help and services and be treated well. What I like about Bert Nash, I call it the culture of honor. That’s how people are treated, they are treated honorably. I fell in love with Bert Nash; this place is amazing.”
Knowing he has a terminal disease has changed how Hosman looks at life. He approaches every day with a new urgency.
“So, what I’m telling everyone now is, why are we waiting? Are we waiting until we get to be 80 or 90? I’m going to tell you, when you get a terminal illness, it’s instant,” he said. “I’ve already called up a dozen people to say, I’m sorry. That’s what I want to tell people, don’t wait, you don’t know when something is going to happen, at an intersection, on a highway, in a doctor’s office. You don’t know what’s coming your way. We all kind of know that, but we don’t practice it. Forgive, let it go, make amends.”
Despite the harsh reality of his diagnosis, Hosman has grown to accept it and is determined to make the most of whatever time he has left.
“I promised my wife that I’m going to put on this suit of joy every day,” he said said. “That’s what I want to project to everybody, instead of feeling sorry for myself or just being resigned that I’m going to die. That’s the choice I’ve made. So, here’s this diagnosis, but here’s how I want to live. That’s all you can do.”