By Wendy McCullough
April 27th, 2023 marked 25 years since my husband, Jason, and I said, “I do.” We vowed to love and care for each other through all of life’s changes, and yet, when you are in your mid-twenties, you do not know exactly what that will mean.
Life’s changes for us meant specifically, moving from military service in Hawaii (where we met, fell in love and married) to Jason’s work as a government contractor with Space Missile Defense Command in Huntsville, Alabama, to subsequent factory jobs back home in Indiana near his family, to complete disability for Jason in 2019. I was a homemaker through Jason’s working career after our service in the Navy ended, until his disability coaxed me back into the work force after nearly two decades.
Life’s changes also included two strong and handsome sons, Alex and Matthew, who would grow up to become Jason’s caregiver assistants while I learned how to give full-time care. They face each day with courage and humor and are our household comic relief. Life’s changes included my learning how to navigate a complex health care system that I had at one time avoided at all costs. I was the crunchy mom who always preferred natural remedies to professional medical treatment, using hospitals and western medicine as a last resort. God must have a sense of humor; the irony of our situation is not completely lost on me! I am now the proud owner of a medical binder, complete with a detailed medication chart for Jason’s many meds and supplements. I learned how to advocate for my husband with his complex medical challenges at a young age while dealing with the frustrations of misdiagnosis. Although we noticed medical changes a few years prior, we began seeking a neurologic diagnosis in 2018. Jason was finally diagnosed with Multiple System Atrophy with Cerebellar Ataxia on March 7, 2022, just one day before his 48th birthday. The diagnosis was a relief to us all.
We have learned to navigate life’s changes due to MSA-C by our faith in God, support from our physical and psychological families, an amazing hospice staff and neurologist, and by making the most of every opportunity and not taking any day for granted. We took a seven-day western Caribbean cruise in May of 2019. I have included a snapshot of Jason and our two sons, Alex and Matthew that I captured just at sunset. At the time of the cruise, I was aware that we were dealing with some neurological changes but not yet exactly what they were. I was also not aware at the time that life globally was going to look completely different one year later, and cruises were going to be forbidden.
MSA has taught our family to love deeply, forgive quickly, and hope for the future. But mainly, to appreciate the little moments of today and stay in the present, because that is all that is promised to us. Even when life changes, life can be beautiful, if we can learn to live it with no regrets.
