“I married my husband knowing that I would have to take care of him.” Today…
We were already dating for 4 months before his diagnosis. I went with him to the last doctor’s appointment on August 9, 2011. At first, we didn’t believe it.
The next day he told me, “You don’t have to stay with me. You heard the doctor – it’s about to get even harder. I’m going to lose control. If you want to leave, I’ll understand.” Of course, I told him I was not going anywhere, and two months later, I married him
Steve passed away in April 2020 after a 9-year battle with ALS
Below you will see the story of the love and devotion of the couple who faced the disease and its difficulties over the years as it was captured by the media.
Years ago, Hope Dezember’s husband – now – Steve, was diagnosed with ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and spine. Steve was then 28 years old, and the marriage proposal happened two days later!
“We met about 4 years before we started dating. Steve had been caught driving under alcohol and was placed in my care. I was a drug and alcohol therapist then, so obviously, we didn’t have anything then.
But one night, 4 years later, I was out with some friends and he happened to be in the group. It was very awkward when I saw him there, but he was so charming, kind and sweet. It still is! That night she sat for an hour listening to me whine about my ex. He didn’t judge me or make fun of me like the other kids did. An awkward night turned out to be a great start.
The next day he called me and it was on our first date where I first entered the house where we now live together. There were little candles, candles and flowers everywhere, Frank Sinatra was playing and he had cooked me dinner.
Even that night, however, he was struggling with his legs. He had the symptoms for 2 years and doctors kept misdiagnosing him. Because he had been playing hockey for years, he was told that the broken bones were to blame for his neurological problem. The same thing happened when it started affecting his wrist: he was told it was “leftover” pain from an earlier break. They explained everything very conveniently until he started to fall, and only then did they begin to seriously examine him.
On August 12th he asked me to go for a walk with him near his home on the Chattahoochee River. When we reached the classic spot where we always sat, we stopped. He said, “I know you told me you’d stay with me forever. If you still want it, will you marry me?’ And of course I said yes! I didn’t even expect a ring, but he had already taken care of that.
I never wanted to get married, but at that moment I had no hesitation. Most of my friends and family thought I was crazy – that we were rushing. But when I told them I was sure, they didn’t doubt me. It was reality. We could handle anything.
Two months later, in October, we got married. Our friends organized our honeymoon on a private island in Belize and it was perfect! We really tried to enjoy it as much as possible while we still had time. At that time Steve could still walk, although I was helping him quite a bit. We may have been naive and in denial. We did not think that his disease would progress so rapidly.
Two days after our wedding, he started a 2-month “blind” treatment, meaning we didn’t know if he was taking the regular drug or a placebo. But when he became seriously ill, he could not face the fact that he would need a wheelchair. It was one of the hardest things for both of us to accept. Five months after our wedding, he was permanently stuck there.
In the beginning, we argued about the painkillers. Because he was in so much pain he wanted to take an extra dose, and I had to be hard on him to implement the doctor’s plan. Or things like “you have to get out of bed today because your lungs haven’t moved at all.” It wasn’t the usual newlywed fights over nonsense like Facebook. They were very intense situations.
But at the same time we continued to live our lives. When he got the pram we started traveling – for a year and a half. We wanted to condense as many things as we could.
One of the best moments was at the Wanee Music Festival in Florida in April 2013. It was our first “dance party”. Then he could still push his pram and we even got on stage and danced together. We have always loved dancing. If the day is not going well, we dance, and that makes him smile.
Around that time he lost his speech. In Pennsylvania, in April 2013, he became very ill with pneumonia so we rushed back to the hospital in Georgia where he had a tracheotomy. I haven’t heard his voice since.
Since then everything has changed. We are at home for 1-2 days and then we go back to the hospital. Twice he died, but was brought back to life. He lost a lot of weight and developed gastroparesis (you can’t empty your stomach). Whatever I fed him he took it out. I had to ‘fight’ the insurance companies because they wouldn’t cover the cost of alternative feeding until he reached 30kg!
This is our life now. A typical day starts around 8. I get up, do yoga and “ground”. Steve wakes up at 9. The routine takes an hour with his pills, meds, bath, etc.
I stopped working in early 2012 when he started losing his balance and couldn’t eat because no one felt comfortable feeding him. But I don’t miss my job. Steve made me realize that I wasn’t actually living the life I wanted. With my degree I thought I just had to work in my field and be a good therapist. But I wasn’t 100% committed to it.
We are blessed and have made it this far. Steve paints with his cart, so we sell his paintings for money. I also sell paintings, t-shirts and jewelry. We also made a documentary called “Hope for Steve”.
He is almost 70 pounds and doing much better. We still go out for walks, but not as often because it’s tiring for him. But he is stable. Of course, we have to constantly “fight” infections, but this is the first time I’ve seen him so well.
Deep down, Steve is the same person. He is brilliant and lets his spirit shine since he has “lost” his body. It’s my birthday next week and I found out she’s arranged a costume, wigs and makeup shoot at a friend’s farm that has horses. And he arranged all this with just his eyes (he has a communication device that works like that)!
He pleases me every day. It’s hard sometimes to be here all the time and not be able to leave the house, so we have a dedicated nurse twice a week. But most of the time it’s just the two of us and for some reason I NEVER get tired of seeing him all the time.
Honestly, we value life more. We start our day saying “whatever we have to do today, it will be a blessing because we are here together”. It’s a strange gift we’ve been given and no complaints. Every argument or mistake taught us something important. Without them, we might not have made it.
When Steve was diagnosed, the doctor told him the average life expectancy was 2 to 5 years, but also told him there was hope because organizations like the ALS Therapy Development Institute were doing a lot of research.