I ventured downstairs in search of THE box and found it tucked in a corner just as I left it years ago. I cracked open the cardboard and finger-tipped through the albums as I did all those days and nights at the local record store off Livingston Avenue in Columbus, Ohio. I pulled out albums long forgotten, including Frampton Comes Alive, A Night at the Opera, Rumours, and The Grand Illusion. I quickly recalled my passion for Utopia, Boston, and Queen. I reminisced with Steely Dan, Yes, Molly Hatchet, and The Who. I traveled down memory lane with the Doobie Brothers, Eagles, and Lynyrd Skynyrd, to name a few.
But, one album, and in particular one song, caught my eye. I smiled at the memory and nodded at its wisdom, chuckling and shaking my head at how its lyrics reflect my life today.
The album was A Decade of Rock and Roll – 1970 to 1980 by REO Speedwagon, and the song was Roll with the Changes. I loved this song growing up in the late ‘70s and love it even more today as we live with Alex’s Duchenne Muscular Dystrophy. The song puts into words and incredible rhythm exactly how one must live with Duchenne. Roll with the Changes describes the only way forward when your world slowly shrinks to ever-decreasing circles, each trying to constrict you to levels you never dreamed possible.
In the song, Kevin Cronin belts out the well-known refrain many times, and for good reason. I see no other way in life and, in particular, life with Duchenne. If you would have told me as I entered adulthood that my future son would suffer from a disease where every muscle in his body would become useless, I would have laughed with incredulity. If you would have told me my son would never be able to run, climb, or jump, I would have ignored you in disbelief. If you would have told me my son would be considered lucky to enter adulthood, I would have thought you a fool.
Yet here we are, thirty odd years later, staring Duchenne right in the face with only one way forward, as so poetically sung by Mr. Cronin.
“Ah, you know you know you know you got to, keep on rolling, keep on rolling, ohhhh roll with the changes!”
This goes for Alex, me, Kristy, Kaitlyn, and everyone else affected by this monster known as Duchenne. If we don’t, Duchenne will steal the only life we have and pull us down into the darkest places. We must roll with the changes that we have already experienced with Alex, including: losing his ability to walk, stand, sit up, turn, raise his hand, or feed himself. And we must prepare ourselves to roll with the upcoming changes of losing his ability to breathe unassisted, swallow, and moving ANY muscle as this disease progresses without delay or concern. We must live with the attitude of “okay Duchenne, what do you have in store for us today?” and then do the best we can.
Rolllllll with the changes.
Duchenne sucks. There is no way around it, especially for Alex or anyone with Duchenne. Although each physical change is frustrating beyond belief, what do we do? We can wallow in misery and hate life, or we can find the joy and love life. We can be angry and resentful, or we can be happy and joyous. To me, the choice is clear.
You got to, got to, got to…
I think, intuitively, Alex knows this. Anyone who knows him will agree. The kid loves life like no other and can bring out the joy in anyone. Seriously, anyone! We do everything we can to help Alex continue along this path, as he does us. If he is down, we help him to focus on the good in his life. And, when any of us are down, he does the same. I lean on him as much as he leans on me and as much as our family leans on each other. Only together can we tame this beast of a disease and make the most of it.
Keep on rolling, keep on rolling….
We tell Alex he is no different from anyone else, except that he sits down more. We tell Alex that although he has physical limits, nothing can stop him from enjoying life. We encourage Alex to live his life to the fullest and show others how along the way. While Duchenne affects him physically, he accepts Duchenne as if it is normal, and moves on. Although I have no doubt he would rather not have Duchenne in his life (who wouldn’t), he lives each day with laughter and love and carries forth the broadest smile. Alex simply adapts, as we all should, and never allows Duchenne to affect what he can control.
He then keeps rolling on, just as the song recommends.
Funny how old vinyl triggers a thought.
Sing it with me.
“So if you're tired of the same old story
Oh baby, turn some pages
I will be here when you are ready
To roll with the changes, baby
Roll with the changes
Ah, you know you know you know you got to…”