While coronavirus is claiming so many lives around the world, this week I am mourning a metro Atlanta man, Steve Dezember, who died this week after a 9-year battle with ALS.
I don’t use the term “battle” lightly and am aware of the negative connotation such terminology can engender. But in this case, I believe the term applies. Steve showed courage, grace and humor as he fought back time and time again against all odds. I have followed Steve’s story for years after watching the moving documentary, Hope for Steve.
I’ve also followed the social posts from his wonderful, equally courageous and compassionate wife Hope has shared about the challenging ALS caregiving journey that are so enlightening. I love how she embraced the importance of self-care and wasn’t shy about sharing the difficulties along with the triumphs of being a long-term caregiver. The couple also shared the financial challenges that a disease like ALS creates. Steve made paintings from his wheelchair and Hope also created a variety of art that they used as fundraisers to support his care. A painting of his hangs on the wall of my bedroom.
Following Steve’s journey over the years has made me more appreciative of having good health and in enjoying the simple pleasures of life. It made me admire the sacrifices that spousal caregivers make to tend to their loved ones. And even though this world can seem like a miserable world to be sometimes, watching Steve fight for another day offered an important perspective.
If you have the means, consider donating to an ALS charity in the name of Steve Dezember. Learn more about his journey and share his story. Keep his lovely wife Hope in your thoughts and prayers.
I hope you and your loved ones are staying safe during this challenging time.