Michael J. Fox is one of my heroes. He’s one of my heroes because he is courageous, because he is a leader, and because he believes in optimism in the face of despair. He’s one of my heroes because he lifts up those who aspire to those traits. But you know one of the other things I love about MJF? That there are a million other reasons to love him too. MJF has been a part of my life for decades, and not for reasons I could have imagined when I was a kid.
Let me take you back to when I was a little girl in Montana. We didn’t have a big fancy TV, but I can still remember snuggling up next to my siblings on the couch as we popped Back to the Future into the trusty old VHS machine. Marty McFly was the epitome of cool, and I was pretty sure I was too, rockin’ my crimped hair and denim skirt.
So I loved him when I was growing up. Who didn’t have a crush on Marty McFly and his sparkling side smile? Marty was cool and saved the day so the future didn’t collide with the past.
Then, when I was 18, he did it to me again. I learned MJF had named his baby girl Esme. I thought it was the most beautiful name I had ever heard and I tucked it away as my secret baby name. Most moms out there know what I mean. The name you never tell anyone for fear they will use it first. The only person I ever told about it was my best friend, Kelly. I would keep that name secret until I had a baby girl of my own.
But before that happened, my husband Casey and I had a little boy - Ford Canon Parks. Ford was born just over five years ago now. Let me tell you a little about him.
Ford has piercing blue eyes and a wild mop of curly hair, so blonde it looks white. It reminds me a lot of Doc’s hair in Back to the Future. I’ve never cut his hair nor do I brush it. He tries harder at everything than anyone I’ve ever met, and he has an infectious laugh that could warm the Grinch’s heart.
Oh, and I suppose I should mention one other thing.
Ford was born with a rare disease called CTNNB1 Syndrome. His body doesn’t produce enough of a protein called Beta Catenin. Unfortunately, that protein has a lot of jobs. Without it, all aspects of his growth and development are affected – including that crazy, wonderful hair. I am looking at him right now and he has this long corkscrew curl that sticks straight out from above his left ear. It’s my favorite.
His tone is very complicated. No, not the kind of tone people are usually talking about when they use the word. His voice isn’t high, low, or in between. Ford can’t speak. That’s just another piece of his disability. What I’m talking about is his muscle tone. He has super low tone in his trunk and just-as-super high tone in his arms and legs. Imagine carrying around an excited kangaroo in a sack. A little bit of dead weight but with these wild limbs that kick and punch and kick and punch, usually when you’re least expecting it.
Up until then I had thought of MJF mainly because of my teenage crush on Marty McFly, (and because I loved MJF’s baby-girl name!). But now I began to realize that MJF had a role in my adult life too: He and Ford had a lot in common. Medicine. Disease. A zest for life no matter what. I was sitting in a clinic room at the neurologist, and she told me the new drugs Ford would need to take are typically prescribed to Parkinson’s patients.
There he was again. MJF in my neurology appointment. He’s the only person I knew who had Parkinson’s.
My life had changed in ways I never imagined. I was re-inserting my child’s nasal feeding tube, going to hours of weekly appointments, and running my own business as a hairstylist where I had to pretend things were rosy. (Nobody likes a depressed hairstylist.) I listened to my clients’ joys and sorrows and everything in between. Every day I left work feeling even more depleted. I felt like whatever breath I did have left in me I was freely giving away to client after client. It started to feel like breathing was a chore. It was my new normal even though I knew it was not normal. I didn’t know it was anxiety. I had never had that. I didn’t know that anxiety was defined as actually living in the future - which I was doing two-fold. I was grieving the future of this fictional life I thought I would have, and I was also living in another fictional future where my son’s life span was shortened. I was in a constant state of back to the future. It was torture. Suffocating.
I realized that MJF had fought that fear too and fought to retain his optimism about his life and his future.
Over this last year I have felt a tweak here or there in my back. Ford is only 5 and lifting him is already starting to take a toll on my body. It scares me. Terrifies me, really. What if I injure myself and can’t pick him up? I have to pick him up. I can’t just tell him, sorry Ford, Mommy can’t get you out of bed today, my back hurts. Sorry little dude, I can’t pick you up, can you walk the rest of the way?
I will likely be lifting this boy for as long as I live, or at least for as long as I can. I knew I had to get serious about my physical fitness, so we recently invested in the Mirror, an amazing workout-at-home system. It’s an investment we made to ensure that I can be strong enough to lift this beautiful child from his bed to my lap. From my lap to his wheelchair. From his wheelchair to the car seat.
And once again, MJF is there.
There’s a dresser next to where I work out in front of the Mirror and on it is No Time Like the Future: An Optimist Considers Mortality – MJF’s most recent book. I put it there after I finished reading it. I can’t bring myself to move it because It feels like it’s meant to be there. To remind me of what I am fighting for.
Here are some photos of Ford that bring me back to the future. (Nobody ever gets time travel right in the movies either, so just go with it!) These are his baby photos - and by baby photos I mean he was 8 months old, because that is how it works with rare disease. Nothing happens in the order you expect. The only thing that happens on time is food and medicine and everything else be damned.
In this photo, Casey and I were in the trenches. We still didn’t have a diagnosis. We had just gotten rid of Ford’s nasal feeding tube and had a surgery to replace it with a g-tube in his abdomen. For the first time he finally looked like a healthy baby. I was so in love with my son here, but I was also so deeply scared at this point in our journey. Those words from one doctor – “shortened life span” - ran though my head constantly. I still don’t know what “shortened life span” might mean for Ford. I have chosen not to dwell on those words.
When I think about those days, when I would go back to the future, I remember how I felt like it was literally choking me. When I go back to all of that trauma, thinking about what would happen in the future for my beautiful child. What we were told he wouldn’t become. What we would all be missing.
Doc is constantly chastising Marty McFly about the future. “Having information about the future can be extremely dangerous,” he says, “even if your intentions are good, it can backfire drastically.”
Ain’t nobody got time to dwell on a shortened life span. Me having information on what “could” be Fords future was devastating. It was ruining my spirit and taking my light. It had grabbed hold of my throat and started choking me. Never being able to catch my breath. Literally struggling to breathe. It was exhausting.
MJF’s story and hard-won optimism was a lifeline.
There’s one more MJF connection to my life. In 2018 I became pregnant with a daughter. Casey and I had a whole list of names we were thinking about. I hadn’t told him about my secret baby-girl name. My friend Kelly, who has called me almost every day since I met her, kept asking if I was naming her Esme. “I don’t know” I said. “I feel weird now.” I probably would have gone with something on our list had it not been for Kelly reminding me how much that name had meant to me for over a decade.
It was a couple of weeks before my due date when I told Casey that is what I had always wanted to name a baby girl. He loved it too, and Esme Amaris Parks was born at the exact time of that year’s blood-wolf moon eclipse. Like that eclipse, she was extraordinary. She is EZ-mazing. She is her brother’s biggest defender.
The woman who took Ford’s baby pictures also took the one at the top of this blog for his 5th birthday. Look at him. If he were wearing his leather jacket, he could be a blonde Marty McFly. That picture doesn’t bring me back to the future. It anchors me. Right here. Right now. A developed skill that takes a lot of practice.
So, when It feels like the flux capacitator is getting overloaded and I am going 88 miles an hour in a day, I take a few deep breaths and head to my Mirror to move my body - and I see MJF’s book. I see a fighter that I am proud to have on my team.
Thanks, Marty, for introducing me to the real hero, Michael J. Fox.
xo,
Effie Parks
Photography by: Chandra Sandoval Photography