“It’s not fair!”
“You’re right. It’s not fair. Life isn’t fair. Baby, the closest to fair you’ll ever get is in my house.”
Truly, my mom has always done her best to make good on that reply, one I heard many times as “it’s not fair” is somehow the battle cry of spoiled children everywhere. My life has never been fair; I’ve had it much better than many.
Despite my sage wisdom and crystal clear hindsight at the ripe age of 29 (yes, I’m being sarcastic- don’t jump down my throat just yet), the spoiled brat still living within me whispers my lifelong mantra over and over again daily.
It’s not fair. It’s not fair. It’s not fair.
Of COURSE, the unfairness of the world would eventually creep into even my determined mother’s house. Try as she might to keep it out, to protect her three children from any hint of cruelty, everyone is powerless against a disease like Parkinson’s- my indestructible father included.
A little insight into our relationship: I’m pretty close to being the prime example of a Daddy’s Girl. I’ve always wanted his attention more than anyone else’s and did whatever it took to get it. Hunting, fishing- the whole redneck gambit. Only his praise mattered and his advice felt like law. There’s nothing I covet more than the feeling of making my dad laugh, like, really laugh. From the belly, you know? Although we hold some differing political ideals, the glamour of my dad has not faded for me. He may watch too much Fox News, but the darn man hung the moon and that’s that!
He’s an incredible father; my sister, brother, and I couldn’t ask for better and, honestly, don’t deserve him. He’s sacrificed so much for us, worked his tail off so we could live comfortably, and did his absolute best to be at every game, performance, and special occasion. He and my mother were exceptionally present (my siblings and I would have all said too much so as teenagers, of course) and they were always telling us how loved we are, how we we’re the best things to ever happen to them.
How was he rewarded? What gift was he given for doing right by all he encountered and giving unconditionally to his family?
Parkinson’s Disease.
So, in my head, the whisper:
It’s not fair. It’s not fair. It’s not fair.
He was diagnosed in 2009. It started off small enough with a slight tremor in his hand occasionally and maybe a few other symptoms my mom had noticed, but not realized were actual signs until professionally labeled as such. My parents lived in Birmingham, Alabama and I was studying two hours away at Auburn University. I didn’t see my dad every day anymore and, true to the nature of us Bishops, this issue was of the “out of sight, out of mind” variety. His symptoms progressed at such a snail’s pace that we all (well, besides my dad) had the ability to ignore it until a few years ago. Truthfully, we were lucky. We are lucky. I know this, but I don’t feel it.
So, the whisper is louder now.
It’s not fair. It’s not fair. It’s not fair.
If you were to assume that the symptoms did finally become more difficult at some point during the last decade, you’d assume correctly. The tremor in his arm is constant, he has trouble walking, and even a simple task like buckling his seat belt has become a trial. As a successful entrepreneur, he’s never had difficulty with self-motivation, but PD will steal even that from you, too. The side effects from his medications have all but ruined his sleep, which leads to a multitude of other issues. Thankfully, he is still able to enjoy many of the outdoorsman activities he’s loved since his own childhood, but not without struggle.
I’m glossing over this aspect of our story. I don’t want to go into further detail because talking about the symptoms, the physical difficulties, what happens to you emotionally and mentally…this is where my throat closes up and my vision blurs. My dad is only 62. The more I sit here and reflect on this, the more frustrated I get.
The whisper is a yell now.
It’s just not fair!
My family’s practice of dealing with this has been to ignore it. What can we do? He goes to the doctor, he takes his medicine, he goes about his life. We ask how the doctor was, ask about his medications, and go on about our lives. We help, we joke, we love. We are not fighting the way other families do and I don’t have an answer as to why. It just seems like he doesn’t want to and no matter the tears shed or the fits pitched, you just can’t make a mountain move.
Enter my best friend, Maggie Rowland Wortendyke. As is such with kindred spirits, we share many things in common. A love of Auburn and our time together there on the drumline, red lipstick, snacks, a good party, and, unfortunately, our fathers having PD. Maggie’s family quietly endured the first few years of her dad’s diagnosis- she didn’t even tell me. I saw the tell-tale shake at a tailgate (say that five times fast) when I was talking to Mr. Mike, Maggie’s father. I remember the moment so vividly and thinking how strange it was to see something so incredibly familiar on the wrong person. I shook (pun not initially intended, but allowed) it off thinking, “If Maggie’s dad had Parkinson’s, she’d tell me.” Maggie’s mom noticed my stare and told her daughter to let me in on the awful secret. I was no longer alone.
Apart from the first years, Maggie’s and her family’s approach to Mr. Mike’s diagnosis has been the polar opposite of my family’s. They are on top of their research, they throw events, they fund raise, and they ride in the Michael J. Fox Foundation’s bike ride, the Tour de Fox. I don’t mean to say they are simply active participants in these things- they are DEEP into this shit. Team Rowland raised more than 90k during last year’s Tour de Fox and at just 27 years-old, Maggie was asked to be the keynote speaker at the foundation’s annual gala. She went on stage right after Michael J. Fox himself. So, yeah. They’re doin’ real work.
At first it was difficult to see how well they were handling everything in comparison to my own family’s stubborn ignoring of the problem. But, I soon realized that the attitude with which any family or one person handles a diagnosis has little impact on just how much it freaking sucks. Maggie doesn’t have it any easier than I do. Along with our mothers and siblings, we are both watching our life-long hero struggle with a daunting disease. No amount of events, fundraising, or awareness can ease that whisper I’m positive we all share now- a whisper that is a yell that is a roar:
It’s. Not. Fair.
When I came to Functionize in January, Lauren (Functionize’s founder) asked me to make a list of my dreams. One of the things I wrote down was to ride in Tour de Fox with Maggie and to begin actively fighting for a PD cure. So, like the perfect crossover of a mother hen and warrior that she is, Lauren decided to help take my dream from simple, quiet goal to an outspoken, actionable fight.
Which is why I’m here, writing this. To share the ‘why’ behind Functionize’s choice to ride in TDF this year. I suppose I should conclude with a plea to help, to ride, to fight, to share- and I truly hope you partake in one or all of those things- but, I guess I just really want to thank you for reading. Most of the thoughts I’ve written here are things I’ve only been brave enough to speak out loud to Maggie and my patient husband, Brian. The attention these ramblings are given by anyone else is wholly undeserving because life isn’t fair for anyone, let alone the minuscule speck of universe writing this insignificant blog.
Everyone has their own Parkinson’s Disease. We all have a whisper. No matter how many times we stomp our feet or scream into pillows or a great, wide void or cry hot tears until we’re all but drowning in them, life will never be fair. But, what I think I may be learning is that if I do what I can now, if I really make an attempt to do something about this the way the Rowlands and countless others have, I can maybe help eliminate this particular unfairness from happening to someone else.
Anyway, it’s only fair that I try.
Mary Kathleen is Functionize’s Social Media Manager and in-house Wordsmith. You can join Team Functionize in the Tour de Fox and/or donate by visiting our Team Page.
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