Today marks 2 years since my diagnosis with Young Onset Parkinson’s Disease. Last year I spent the day reflecting, looking back. I made a TikTok, a short video, of me telling myself what I wish I had known that life-changing day. Today I did none of that. Don’t get me wrong, I have my moments of reflection, most notably when I develop new or worsening symptoms. When I wake up to a tremor in my leg, that wasn’t there 6 months ago, or when I lay in bed wondering if I will ever know stillness again. When I am looking through last year’s photos and remember when I still wore platform sandals daily. Now I wear slip on Skechers, an unimaginable fashion don’t, prior to the recent fall I had on Christmas. Now I chose function over fashion, that’s the obvious choice. I have moved on. I have a routine. I started my day as always, with a workout. Make breakfast for the kids, drink my coffee outside with the dog. Yogi, our rescue pup, another new edition to my life, that in a way, also rescued me. We bask in the sun, him with his belly up, me with my shakey hand, waiting for my meds to kick in. It is unlikely I have slept a full night. Insomnia isn’t even something I bother thinking about anymore. My routine always includes time for a nap.
Moving on didn’t happen suddenly. It’s full of stops, starts, u-turns, sharp lefts and lurches forward. Like a bad romance. I just can’t quite you Parkinson’s. I have to live in the moment. There is no other way forward. If I look back I won’t appreciate everything I have. The people I love, the friends I depend on, the beautiful, messy, chaos that is life. It will change. Of that I am certain. I can’t control everything, only myself, and I’m not really great at that either. I mean where’s the fun in self-control anyway? Parkinson’s, and turning 50 had a funny way of erasing any trace of self doubt. I am 100% unapologetically me. Parkinson’s is a brutal disease. I see it take things from me, and from my friends. Our mobility, our voices, our sense of smell, even our smiles. But we are not this disease, and we are so much more than the sum of our parts. I understand a few things better now. First, why people get DBS. Brain surgery seemed unfathomable. Now I get it. When you feel like you would do anything to feel better then having holes drilled in your head becomes much more appealing. And I understand what acceptance really means. For me, acceptance is action. It’s not a passive word. Accepting that I have to work on building and maintaining a consistent routine. Give my energy to things I am passionate about. Letting go of things that drag me down. Feeding the things that sustain me. The things that matter. The act of accepting that I am a Weeble Wobble, I get knocked down and pop back up. Because today is a gift, that’s why it’s called the present 💝