May 31 is World MS Day. No, it is not a day to celebrate the sometimes devastating disease known as multiple sclerosis, but for me, it is a time to acknowledge those who have made a difference in my life since my diagnosis. There are many to thank: Those on the medical side as well as family and friends. But my greatest debt of gratitude is owed to my primary caregiver: My son, John.
My son is barely 21, still a man-child in my eyes. Yet, as he teeters on the brink of adulthood, cautiously dipping a toe into the pool of life, he has steadfastly remained at my side. John has lived a thousand lifetimes since I was diagnosed with MS. He was only six when our lives were turned upside down, and I can only imagine what was running through his young mind as he watched me struggle to find a new normal.
We were alone in this fight—his father chose to abandon us, first emotionally, then physically-- leaving a child to function as an adult and my primary caregiver, without the requisite skills or knowledge. Together we learned how to manage my illness, and together, we learned how to adapt my new needs to our lives. When I began to have difficulty walking, he never flinched as I began to use a cane, then a walker. Instead, he sought to ensure that doors were always open, and that my paths were always clear and smooth. And when I concluded that driving was no longer a safe option, he became my primary chauffeur, driving me to medical appointments and social engagements without complaint.
I was nonplussed when he decided not to go away to college—I admit at that age, I was all too eager to leave the nest and spread my wings—but I eventually realized that if he had travelled miles away, my compassionate child would have worried his butt off. His mind would not have been focused on his studies, but rather on whether Mom was okay. I felt guilty about his decision to stay behind when so many of his friends were out there reaching for the brass ring, until I realized he had a different dream. Music.
While still a toddler, John would sit on my lap as I played the piano, eventually joining in to pick at a key or pound out a rhythm. The first song he played was “Ode to Joy” (the ringtone assigned to him on my phone). I quickly began searching for a piano teacher who would take a child barely in kindergarten. Lessons were a source of amusement, but I should not have been surprised. At age five, John confidently recited the names of every U.S. president in the order they served and when he refused to practice, but effortlessly played each assignment at lessons, I realized he had taught himself to sight read. In the same way, he picked up the guitar and learned to play so well that one teacher simply threw up his hands in frustration and informed me that there was nothing else he could teach John. The rest, he said, John needed to learn on his own.
And he did. John can play a rift as well as much more experienced musicians, and write songs that tug at your heartstrings and dance in your mind. He rides the members of his metal band like a drill sergeant and has little tolerance for others who do not take their music seriously. John is dedicated and driven in a way most will never be in their careers. He has a dream and he is not afraid to chase it.
That’s why I trusted him to convert our basement into a practice space, then into an informal show venue. He hosts emerging metal bands from around the world and sometimes, a lot of exuberant kids are in my basement. Sure it gets loud, and I have to call the carpet cleaner occasionally to shampoo the rugs and clean the furniture, but the look on John’s face after he has produced another successful show is worth it. He is proud at his ability to book and manage shows, and I am not about to deny him.
I am still prepared for John to eventually leave the nest—I have remodeled my home and secured the equipment I need to be self-sufficient when that day comes. But opening my basement and yes, my home, so that he can pursue his own dreams is my way of paying him back for years of patience, compassion, and care.
He has begun to take baby steps out of the nest—taking his band on the road for occasional weekends—traveling far enough away to be close but yet so far, and this summer he is extending a tour to a week. He worries about me and yes, I worry about him, but that’s what texting is for. I have proven to him that I can survive in his absence. And he has proven to me that he is responsible enough to be unleashed onto the world.
I once feared that my MS was holding John back. Now I realize that he just adapted and found a different way to spread his wings. And there is no greater joy than watching your man-child fly.
So on this World MS Day, I urge you to take a look around and thank those who have made a difference in your battle with MS. You can live a productive life with the help of family, friends, and medical professionals, despite MS!
My name is Seelie Kay and I am a MS Warrior.