Editor's note: This is not a fishing expedition for sympathy - rather just one person's story that hopefully might help others.
My wife was a woman of deep faith. She always told me "God never gives you more than you can handle."
I never gave that much thought before. That is, not until Susan, my wife of 29 years, was stricken with an incurable brain disease, signaling the start of a five-year battle she lost on March 14 at the age of 62.
Let me start by saying that I am an intensely private person, and sharing this story, while therapeutic, is also difficult.
Throughout all the unknowns of this journey that began in the spring of 2018, as we went from doctor to doctor and hospital to hospital for two-and-a-half years seeking a diagnosis, to the past 27 months of horror as her disease slowly sapped her of her ability to move, my wife fought every day with bravery and dignity even as she lie dying in a hospital bed in our home in Kentucky. Although this rare disease, known as Multiple System Atrophy, took her life, it never took her faith.
I kept remembering that advice Susan had offered so many times before. "God never gives you more than you can handle." Then I'd turn to the bottle.
For those who, like me, have never heard of this disease, it is a rare form of Parkinson's disease that affects the brain's ability to control motor skills. For Susan, those symptoms first manifested in difficulty walking, then speaking, then using her hands. By spring of 2018, at age 57, the first signs that something was wrong were changes to her gait as she walked. By 2019, she was unable to write legibly and her speech was slurred. A year later, she had fallen in the house a half-dozen times. All the while, specialists at Ohio State and Cleveland Clinic were stumped. Covid restrictions resulted in canceled or postponed appointments all while this invisible foe continued its work.
Finally, a fall that ended with a broken hip in November 2020 sent her to a Lexington, Kentucky hospital for a month for surgery and rehabilitation. Although she would never walk on her own again, it was during that stay that another specialist assigned to her case was able to diagnose her condition — an incurable brain disease that would eventually result in death from some other condition, such as a stroke or pneumonia, caused by a weakened immune system.
There were many unknowns, mainly how long would it take for this disease to run its course. Although the typical duration was about seven or eight years, there were reports of people living 15 years with MSA, so there was room for cautious optimism.
Susan's neurologist labeled her case "the most aggressive I've ever seen" so optimism soon gave way to a heavy dose of reality.
Throughout the duration of this ordeal, Susan fought every day with unwavering optimism, convinced she would beat her affliction. She proved, beyond a doubt, that even in the face of death there was nothing she could not handle.
For me, it was a different story entirely.
There is not a more difficult job than being a caregiver. The ordeal left me drained emotionally and physically, and each night after my wife fell asleep and I finally had "me time" I sought refuge in a bottle. I thought drinking every night would provide an escape, but every morning, after the alcohol had worn off, the same problems were there — a partner who could not get out of bed, who eventually was unable to eat solid food or swallow medication and, without going into too much detail, could not do any of the basic things the rest of us take for granted.
Almost overnight, I had gone from just being a provider to taking on every task around the house on top of being a caregiver.
For a year-and-a-half every day I lifted her out of bed, bathed her, got her dressed, fed her three meals a day, and lifted her back into bed in the evening. After 18 months, finally at my wit's end, I bit the bullet and hired a private aide to help out a few days each week. Still, there were nights and weekends and carrying two houses and putting a kid through college. Suffice to say, the stress was off the chart.
Her neurologist labeled her case "the most aggressive I've ever seen" so optimism soon gave way to a heavy dose of reality.
I kept remembering that advice Susan had offered so many times before. "God never gives you more than you can handle." Then I would turn to the bottle.
She continued to fight each day with courage while I crumbled under far less weight. She never played the victim or felt sorry for herself, although she had earned every right to do so. When she no longer could eat solid food (which occurred the day after Thanksgiving), she was forced onto a liquid-only diet of smoothies, shakes and broth. Hardly enough to sustain any weight. When she no longer had the strength to tilt her head back to drink from a cup, she drank through a straw. When she no longer had the muscle control to draw liquid through a straw, we had to spoon feed her food and drink. Throughout it all, she never showed fear of what we knew was coming. Each day she said, through an assistive communication device, that she was waiting for a sign and was not ready to die. While she kept her faith, I found salvation in bourbon.
In her final days, after shedding about 50 pounds and her body racked with pain, she found comfort in the same pain-management medication that she had refused for so long. It takes guts to die with dignity.
Like flipping a switch, my own reliance on liquid salvation ended with her death, for which I am thankful, and today, I realize there is nothing so great that I cannot handle it. The proof was always right in front of me. I just never recognized it.
Special thanks to my daughter, Lauren; my colleagues at TurfNet - Peter, Jon, Dom and Steve; and my many cherished friends for their continued support through this life-defining journey.
