A chance meeting with friends, a long talk into the night, then a first date where he cooked up a gourmet dinner complete with candles and Frank Sinatra playing in the background – Hope Cross and Steve Dezember’s courtship seemed straight out of a rom-com. But the new couple was in for a major plot twist when, not long after they met, Steve started having a lot of pain.
When Steve’s wrist first started hurting in 2010, the doctors said it was just an old hockey injury acting up. But then the pain moved up to his elbow, and by the time he met Hope in 2011, the former athlete was falling down randomly.
The doctors had shocking news for the young man: Steve had Amyotrophic Lateral Sclerosis (ALS). Also known as Lou Gehrig’s disease, the illness affects nerve cells in the brain and spine that control movement. There is no cure and the average life expectancy is a mere three to five years from the onset of symptoms.
“It was a long, silent drive home,” Hope says of the three-hour trip back from the specialist’s office. After two days of crying and little talking, Steve asked Hope to go for a walk to “their spot.” Once there, he told her he wanted to fight this disease, no matter what it took. Then he got down on one knee and asked her to marry him.
“This isn’t going to be easy,” he told her, “and I understand if you want to to walk away right now.” But Hope had no intention of walking anywhere without Steve and the couple was married soon after.
Real life intruded on the fairy tale quickly. Two days after the wedding, Steve started on an experimental drug as part of a clinical trial. But while it may have slowed down some of his symptoms, the disease continued to ravage his body. Over the next few years Hope watched the love of her life lose the ability to walk, sit, feed himself, talk and then even breathe.
“I could have hired a nurse, but I wanted to be the one to take care of him,” Hope says.
So she quit her job as a psychotherapist and became Steve’s full-time caretaker, learning how to manage his feeding tube, treat his pressure sores, suction his tracheal tube and then how to work the ventilator that was eventually necessary to keep him alive. “I could be a respiratory nurse now,” she laughs, adding that she’s found the experience to be very empowering. “I learned that if I can do this, I can do anything.”
Now that he’s 90 pounds and fully dependent on machines to live, Hope does everything for him. She even learned to read his lips before they were gifted an “eye gaze machine” that allows him to communicate simply by moving his eyes. Having just passed the ominous 5-year mark, Steve has no illusions about recovering but that doesn’t mean he’s done fighting either. He even pulled through after “coding” twice in the hospital.
“The doctors took me aside to have that conversation,” Hope says, “but I just told them ‘You don’t know Steve! He’s not finished yet.'”
And Steve is definitely not finished yet. After going through a bucket list with Hope, including their dream honeymoon to Belize, the couple decided to make a documentary about their experiences. “The main purpose of course is to spread awareness about ALS, in hopes of finding a cure,” she explains, adding that people don’t realize it can strike young, healthy people like Steve. “But the bigger reason we’re doing this is to show people that just because life is hard, doesn’t mean that it can’t be good!” They want people to hear their story of love, adventure and, yes, pain, and be inspired to live their own lives more fully.
Steve will die soon. They both know that. Indeed, Hope has already helped Steve plan out his funeral. She’s going to have him cremated and then take his ashes on a road trip following the route she and Steve took together on a trip, scattering them along the way. And if Hope has one piece of advice for others with a terminally ill loved one, it’s that they should make a plan too. “You have to have those difficult conversations early on. You should stay positive but there is great peace of mind knowing there is a plan,” she says.
So what’s Hope’s plan then? Right now she’s focused on taking care of Steve and getting their message about ALS out, but she’s not worried about the future. “Steve keeps telling me, ‘God and I will help you! I’ll always be watching over you.'”
And they both believe that someday they will still have their happily ever after.
The Hope For Steve documentary premiered June 1, 2014, in Atlanta, Georgia. For more information you can follow the couple on Facebook. You can donate to Hope and Steve’s foundation here or the ALS association here.