Our ghost, made out of an old, white sheet, hangs from the front trellis. Our wicked witch peers out the living room window. Our creepy, homemade scarecrow guards the path leading to the candy, although in the midst of the pandemic, we don’t expect many trick-or-treaters today. Even our town’s annual Halloween parade–typically one of the largest in the country–has been canceled because of the coronavirus.
No doubt, these are very scary times around the world. But in our family, on the 21st anniversary of a very frightening medical crisis, we’re celebrating, grateful that acute disseminated encephalomyelitis is less haunting this year.
On October 31, 1999, my husband, Michael, woke up with a numb left hand. I ignored his concerns as I happily dressed our infant daughter, Caroline, for her first Halloween parade. The signs I dismissed were actually the onset of ADEM, a rare and mysterious neurological disorder that nearly killed Michael–twice–and changed our lives forever.
After being rushed by medevac to the hospital, overnight Michael became paralyzed on his left side. His speech became completely incomprehensible. He returned home after about two months, then was out of work for eight years, never able to return to his beloved career in television news and media consulting. Michael’s deficits were similar to those caused by a severe stroke; his recovery was excruciatingly difficult and slow, after years of physical and cognitive therapy. While life improved tremendously, it would forever be defined as our “new normal.”
We share our personal experiences, through the media and public speaking programs, to help others going through a prolonged medical crisis. A television story I produced has been viewed by thousands, who shared it with friends and family to help them better understand the difficulties. Although every recovery is unique, many survivors have said our story gives them hope; they take comfort in knowing we’ve gotten back on our feet, even though the ground still shifts in ways we wish it wouldn’t.
Earlier this year, shortly after the pandemic began, Michael left the job he held at a rehabilitation hospital for 13 years. His doctor said it was too risky for him to be around patients recovering from coronavirus. That meant looking for new work as Michael was about to turn 68, during high unemployment.
He landed a job at a retail store as a sales associate. Immediately the ghost of ADEM appeared, revealing glitches in his brain’s wiring, which made complex computer tasks impossible. He had no choice but to resign. It was crushing proof, for both of us, of what’s been lost; in earlier times as a news producer, Michael was revered for his ability to multitask and remain totally calm under pressure.
A couple of days ago, Michael accepted a new job as an activities assistant at a senior living facility. We’re celebrating this Halloween–not only the new job–but our bond. Twenty-one years ago, we made a decision to do whatever it took so Michael could recover. Today, with the darkest days long behind us, we’re intentionally focusing on reclaiming joy in our lives. That can be as simple as putting up Halloween decorations together, even if this year we’re practically the only ones who will see them.
Wow Michael! I had absolutely no idea what you, Sandy and Caroline had been through. You and Sandy have done so much good going out and talking about this. You’ve opened eyes and you’ve given hope and I will never look at you two the same again. You have been through hell and back and never gave up. What an inspiring story. I always knew my Dad was in good hands with you at Health South. He trusted you implicitly and now I know why. Thank you both for taking the time to put this story out there. God bless….
Thank you, Cathy, for the lovely, thoughtful comment. Means a lot! Much love to your family.