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.
Photos courtesy of Hope Cross
Thank you, Charlotte. I’m sitting here with tears running down my face. Love such as Hope and Steve have should be celebrated in this fashion. I love what they are doing. Refuse to give up. I have always believed that love really does conquer all things. My heart goes out to both of them.
Thank you Sarah! I cried too, writing it. Then my editors all cried editing it. It seems to be a crying jag hahaha
ALS is the worst. End of story.
Amen.
…Love is the fuel of miracles.
My grandma just died from ALS last November. She lived with my family for the last few months. Actually, we didn’t know she had ALS until last June. Then my brother left on his mission (a year ago today!) and she moved in a week later. It was all pretty awful. When she moved in, she could still feed herself. And then she couldn’t. She could still walk. And then and couldn’t. It got harder and harder to understand her. We couldn’t do the eye machine like Hope and Steve. My grandma had NO money and it was all just so expensive. The week before thanksgiving she told my mom “I’m dying.” She was so dramatic about everything we ignored it. Until a few days later when my dad woke me up with the news.
It was not the best time of my life. And since ALS is genetic, there’s always a small, nagging fear in the back of my mind that my mom, my aunt, and all the grandchildren have it just waiting to destroy us. Fun times.
Hi Katherine!
The fact that your brother left on his mission a year ago today means you are LDS!
You are probably far too young to remember President Spencer W. Kimball (although Charlotte told me that she remembers and misses President Kimball and Charlotte isn’t old!)
President Kimball was born in 1894 (no, I was NOT around at that time) and he died in 1987. President Kimball had painful health problems beginning as early as 1932. Including boils (shades of Job).
He had a myocardial infarction in 1948 (nope, I STILL was not around yet). He had talked the doctor into not telling the other apostles so he could still go on church assignments,
and after a month of rest had another heart attack after his next church assignment.
Throat cancer, (even though he never smoked or used tobacco) and resulting surgery to remove one of his vocal cords and half of another…leaving him barely able to speak above a horse whisper, coronary artery disease, then a return of throat cancer, which caused a delay in his heart surgery so he could have radiation therapy on his throat which was successful, then a 4.5 hour open heart surgery.
All before he became the Prophet and President of the Church.
And remember, succession as the Prophet and President comes by moving up in seniority after the current President dies.
President Kimball COULD have died MANY times. God wanted him to become the Prophet and President of the Church.
Then osteoarthritis in his spine, subdural hemotoma, TWICE, bleeding peptic ulcer, and he died at the age of 90.
Much suffering in those 90 years. And he always fought to be able to serve.
One of my favorite quotes of his (among many) is: “Your faith will perform miracles, especially when you get your hands and feet involved.”
Prayers are often answered by people. Performing miracles by faith, and their hands and feet.
President Kimball taught how to serve EVEN while his physical capabilities were reduced, one by one.
I have always believed his afflictions were to teach us. The underlying lesson and example in all that he did.
And his afflictions never deterred him. And he was happy. Full of love and gratitude. And full of eagerness to help and serve others.
Just like Hope Dezember said: “People need to understand that just because life is hard, doesn’t mean that it can’t be good!”
Darwin,
Thank you for this story! I myself am not LDS (different faith), but this really spoke to me. President Kimball had a purpose that God wanted him to fulfill. He had a story to teach. Being able to serve (and LOVE) others, even your weakness, is what Jesus taught us to do. For in my weakness, HE is made stronger. President Kimball showed this clearly. God doesn’t need us to be able…he just needs us to be willing. Thank you again, Darwin.
You are so very welcome Sarah!
And I love the way you put that…”Being able to serve (and LOVE) others, even your weakness, is what Jesus taught us to do.”
So very often I am disheartened…thinking…”There must be a great many people smarter, more talented and capable and wise who can do things better than me!”
Then I think…”But since I’m here, I will do what I can, and make the contributions I am able to.”
Blessings follow. Things get done.
You really put it into perspective: “God doesn’t need us to be able…he just needs us to be willing.”
So thank-you as well Sarah!
Hi Katherine, sorry to hear about your grandmother, it’s a terrible disease that I’ve also had to deal with in my own family. You should know that in the majority of cases, ALS (or MND as I know it) is NOT genetic and not something passed down through the family. If there’s no other known occurrence of this in your family history, then it’s doubtful it’s the familial type. I hope it helps allay your fears.
Oh Katherine! I’m so sorry for the loss of your grandma. It must have been heartbreaking to watch her deteriorate before your eyes. ((huge hugs)) The death of a loved one can be traumatic on so many different levels… emotionally, physically and (like you pointed out) financially
What an emotional read. My husband has some medical issues that have required me to be his caregiver at one point. If I ever had to quit my job, quit my whole LIFE to take care of him, I would do it. I can relate to Hope, and she is truly an inspiration.
((hugs)) Megan! I hope your husband is doing better. And what a beautiful sentiment about caring for him – YOU are an inspiration:)
What a beautiful love story. Sometimes in this day and age it feels like people approach relationships and marriages from the place of what’s in it for me? rather from the perspective of what can I give to this person/relationship? It is refreshing to read of this couple’s complete and unselfish love for each other.
Agreed! Such a nice change from reading about Hollywood pre-nups and bridezillas!
Being a registered nurse for 25+ years has allowed me to see the horrible and beautiful things in life. I am always amazed at the love and compassion people show to those they love and to total strangers. It’s true, “Just because life is hard, doesn’t mean it can’t be beautiful”
I bet! My mom is a nurse and she has some really amazing stories. I have so much respect for nurses – thank you for the work you do, Diane:)
What beautiful people. What love.
Wow what a story. What do you do for money in that situation I wonder? And if the other person quits their job, how do you have health insurance? Medicaid? I worry that something like this will happen to me someday, but since I’m still single I don’t know where I’d end up..I don’t think I want to think about it.
All good questions. I honestly don’t know. I know they have a fund to help but I imagine it doesn’t cover everything.
I had a friend pass from this years ago… thank you for sharing!
I’m so sorry, Jody!
Hi Charlotte- It was really so nice finally meeting you at the museum today. You give very nice hugs!
As do you! I loved meeting you too Carole!
This story really speaks to me and somewhat reminds me of my journey with my late husband. He was not healthy when we met, but I had no idea how bad it was. Before we were serious, I was visiting him in ICU. Friends told me I needed a boyfriend not a project. Like Hope and Steve, love took over. I learned to be a nurse in my spare time. Most difficult, heart-breaking experience of my life, but almost the most rewarding. Helping the love of my life live out his final days with comfort and meaning did as much for me as it did for him. i am stronger, more compassionate, and know i can now deal with anything. It has also made me even better at my job in a nursing home.
This whole comment is so beautiful. THank you so much for sharing some of your story, Kat! I’m so sorry about the loss of your husband. It sounds like you were an angel to him:)
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