When they married about six years ago, Hope Dezember knew that she and her husband, Steve, wouldn’t be able to spend the rest of their lives together. Steve had been recently diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease.
He was 28. She was 26.
While the Atlanta area couple was dating, Steve would sometimes have trouble with his wrist. They were eating crab legs once, and he couldn’t hold them. A few months later, he started falling.
They visited several doctors and after some tests, he was diagnosed with ALS. It’s a neurodegenerative disease with no known cause or cure. It causes the body to shut down, paralyzing those who have it, even while the mind remains active.
“We went to five or six doctors. He was young, he was an athlete and it hit us pretty hard on the drive home,” Hope said.
Two days later, Steve asked Hope to join him for a walk by the river because, he said, he wanted to enjoy walking while he still could. That’s when he proposed to her.
“He said, ‘I know this is going to be hard. You know what this entails. You don’t have to stay,’ ” Hope said. But she didn’t think twice. She said yes to what’s become a “beautifully weird adventure.”
Still dancing
They were married two months later. They honeymooned in Belize. Steve had trouble walking, so Hope took him into the ocean and the water helped him move. They held each other and danced.
Now, Steve is bedridden, but when he lies beside her, Hope looks back on that memory fondly. She says she doesn’t want the dancing to stop just because Steve can’t stand anymore. For a while, she would lift him up and dance with him, but now he likes to watch her gyrate around his bed. She said she looks like a “silly fool,” but he doesn’t think so.
Hope says they were naive about ALS and didn’t think the devastating progression would happen so quickly.
“ALS is relentless,” she said. “It will show its face to you whether you’re prepared or not.”
For a while, Hope tried to continue to work and care for Steve at the same time.
“He would often call me at work and say he fell and couldn’t get up,” she said. “One time he fell and cracked his head open.”
It was then that Hope knew she had to quit her job and care for Steve 24/7. First, she learned how to feed him and deal with choking. Then, she learned to use the feeding tube.
Her journey as his caregiver revealed to her who she was meant to be.
“My whole life I thought, you go to school, I got my master’s degree, I was working as a mental health specialist. My clients liked me but I never really felt satisfied. I never really felt like it’s my purpose,” Hope said. “I still think my purpose is to help people. … Steve has actually given me my actual purpose.
“He’s really opened my eyes up to a whole other world of possibility.”
Getting real
Still, there were difficult times that revealed that things were “getting real.”
Hope recalled a time when they were traveling and Steve became ill. They rushed home and a doctor sent them to the hospital; Steve had pneumonia. A doctor told them it was time to consider a tracheostomy, a procedure in which a tube is inserted through a hole in the neck to help a patient breathe.
“We were blindsided. We didn’t think he needed it at that point,” she said.
Ten hours later, Steve coded. “He actually died on me and was resuscitated,” Hope said. He “did that twice and that’s when we realized, ‘Obviously, we need a trach.’ “
At that moment, she was petrified and overwhelmed about how to care for Steve. She was afraid she would accidentally kill her husband as she learned to suction his trach.
“I have had to have a lot more faith in the dark moments,” she said. “Just being like, ‘I don’t know how we’re going to get through this.’ Even times when Steve gets really sick, I get really discouraged, like why is he so sick right now? I have to have faith that it was just part of God’s plan.”
Along the way, Steve encouraged Hope. He said she cared for him even better than the nurses that day.
“It showed me that I can really do anything. I didn’t really think that I had a whole lot of capabilities and it really empowered me,” Hope said. “He empowered me and would tell me I’m doing a great job. He’s taught me that I can handle a lot more than I ever gave myself credit for.”
A life that sparkles
Together, the couple created a documentary to raise awareness about ALS. They called it “Hope for Steve.” It has been a part of some film competitions and is available on DVD. The couple also creates artwork using paint and Steve’s wheelchair.
“We want to spread awareness and most importantly hope for all those diagnosed with the horrible condition,” the couple said on its website, HopeforSteve.com.
But along the way, they also came to realize that Steve is giving hope to Hope.
The couple is determined to make the most out of life, and it’s what Steve wants Hope to continue doing after he’s gone. Through a machine that speaks for him, he said he wants her to, “live her life the way she wants, travel the country, and to learn to be happy without me, and to live life to the fullest, whatever it is.”
Hope smiles when he says that. She thinks her future may hold a career in natural medicine, she said, “maybe even learning some spiritual teachings or yoga.”
Hope said it’s hard to think about life without Steve. “It will be a lot less sparkly. He adds a sparkle to my life. He’s got that sparkle in his eye and his smile. He will definitely be missed, but I will definitely be OK.
“I know that I’m capable to do anything that I really set my mind to, and that’s a beautiful gift to be given by somebody, to feel empowered and strong in yourself,” she said. “He definitely gave me that.”
