Patient POV Story

"It’s nice to participate in the world still. I love seeing people’s interpretations of the paintings, and it brings me great joy."—Steve Dezember

In late summer 2011, at 28 years old, Steve Dezember was diagnosed with amyotrophic lateral sclerosis (ALS), an especially cruel neurodegenerative disease that steals a person’s mobility, voice, and, ultimately, their ability to swallow and breathe. Dezember and Hope Cross married shortly after he was diagnosed. “Watching Steve fight so hard for his life is worth every ounce of stress and work that goes into it,” Cross says. “The look of joy when he sees a painting he’s made, the smile he gives to every person who interacts with him, the way his eyes light up when he’s watching football. He has taught me that every single thing is a gift, and the power of your mind can get you through anything.”

Dezember painstakingly typed the following with a Tobii eye gaze communication device and created the artwork with his electric wheelchair.

First symptoms

I was a longtime hockey player who naturally picked up golf. One day I noticed I couldn’t play with the same ease, and found my hand getting weaker. The doctor believed it was a side effect from a previous hockey injury. Then I began to trip and my foot felt heavy (a symptom called “foot drop”). It wasn’t long before my falling was fairly regular, and I became more aggressive about finding the right doctor.

I was being seen at the Emory ALS Center (after my diagnosis) but the distance made the trips too difficult so we developed a relationship with Emory Johns Creek Hospital, as it’s less than 10 minutes from our house. It’s our home hospital now. The very first visit where it was more than just a trip to the ER for a catheter or some antibiotics was an intense trip. I actually coded twice, with one of those being a code blue. I had to have an emergency tracheotomy, which wasn’t expected—I wasn’t prepared to lose my voice. Not only did the staff save my life, they also helped us learn how to communicate with boards. They were patient with my wife and helped her through her anxiety of learning how to suction and do trach care.

Above and beyond

I’ve spent many weeks in and out of the hospital for infections, comas, gallbladder removal, and other complications. The medical team helped me when I had gastroparesis and couldn’t tolerate food by getting me on IV nutrition and changing the formula as needed. They have never given up on me, even when I was 67 pounds and couldn’t tolerate water in my feeding tube or when I was in a coma because of malabsorption problems and overdosing on my pain medication. Dr. Titu Das, an infectious disease physician, follows us at home for my infections to try to keep us out of the hospital and away from any germs or flu. Wound care nurse Janelle Dees has become a friend of Hope’s and will help her at home when she’s in a panic.

I was in a clinical trial a few months after I was diagnosed but did not see any improvements. Hope would do things like stretching and massaging my muscles to help me keep moving. I did breathing exercises to try to keep my lungs healthy before the ventilator.

I’ve tried all the supplements around, with little improvement. After I was colonized with infections and diagnosed with anemia, my wife began to study herbal medicine and has helped with my blood counts, which gives me the energy to keep fighting the complications.

Love as art

Hope and I were making a painting with artist Jeremy Brown. Hope was holding me up, since I was unable to stand or walk at this point. He dumped paint on us embracing, and wrapped the canvas around us to capture the love.

We got paint on my wheelchair, and Jeremy and Hope encouraged me to make a painting to clean the wheels. Jeremy stretched the painting and we hung it in our living room. Visitors began asking if they could buy one, and it really gave me purpose and motivation to get out of bed, which is just so very hard to do.

Advice to new ALS patients

Record your voice and make videos for your family. Eat your favorite meals and travel to places you’ve always wanted to go. Handle the important stuff, even though it’s sad to face—like getting your spouse’s/caregiver’s name on everything. Set up power of attorney and have all the documentation done right away. I waited because I didn’t want to accept my diagnosis, which made it more complicated when I couldn’t speak or sign for myself. It can be easy to focus on what you are losing—your ability to walk, eat, breathe, speak, etc.

So hold on to what you have left and try to find solace in it. Make plans with your family, and have the difficult conversations early. Thankfully Hope and I did speak about these things, so when I coded and needed emergency surgery to survive, she knew it was my wish and told them to operate. Build your community and embrace those who want to help. Finally, share your story: As ALS patients, we have a unique opportunity to help others learn to live life a little more fully and with more gratitude.

"It really gave me purpose and motivation to get out of bed, which is just so very hard to do"

Emory ALS patient Steve Dezember, who uses his wheelchair to create art.

To support Emory’s ALS research, patient care, and the Emory ALS Center under the direction of Dr. Jonathan Glass, contact Camille Sears, director of development, at 404.727.9346 or camille.sears@emory.edu.