The best day, that’s what I wanted to give to my daughter Maya. The day was April 17, 2017. I had been diagnosed with Parkinson’s disease (PD) only 12 days prior and hadn’t told my youngest, then 17. Why was I trying to hide it? That is so unlike me, to keep something so important, hidden from her.
I didn’t tell her because I had this fanciful idea that I would give her that perfect day, this one last time before our communal world was forever changed. I knew that once I told her we could never go back to those carefree days. One last day...untouched by Parkinson’s.
But in retrospect, I wasn’t fooling anyone. Least of all Maya, the most observant person I know. Look at my legs in this picture. I thought I was standing straight up. I fell at least one time that day and poor Maya had to help me up from the pavement, dust off my knees and wipe the blood from my palms; all by herself and with no explanation from me. I was trying to be strong. Hoping that if I didn't admit something was wrong, then she wouldn't notice. I maintained this stance for years.
But today I’m ready to set that burden down, at least temporarily. I’m tired. I just need a little rest from fighting this foe called Parkinson’s. I’m tired of trying to look on the bright side. Tired of looking for silver linings. Tired of grinning and bearing it. Mostly I’m tired of never talking about the many losses that come with this diagnosis. A diagnosis, which rather quickly high-jacked my life and left me sitting in a wheelchair, wondering, “Where did my life go?” as everyone around me seemingly went breezily on with their lives.
So here it is. My list of losses:
- I miss working.
- I miss driving.
- I miss standing up without thinking “Where are my feet?”
- I miss people in the world thinking I’m cognitively intact.
- I miss holding babies with ease.
- I miss getting dressed all by myself.
- I miss talking in restaurants loud enough to be understood.
- I miss rolling over in bed when I want to find a more comfortable position.
There are too many things to list them all. Doctors tell you when you’re diagnosed not to worry too much about the future. That once you get on the right medications you’ll feel almost like your old self. All you need to do is exercise, eat right and take six pills every three hours, all day and all night.
But here’s the rub: you never again really feel that way, like your old self. I feel the Parkinson’s every minute of every day. And I hate it. I hate feeling it in my stiff and ungainly walk that no longer lets me pass by unnoticed, but rather elicits a chorus of “May I help you” or “Can I help you with that?” from others. I hate feeling it in the bruises left sore on my body from almost daily falls.
Parkinson’s takes and it takes and when your guard is down, takes a little bit more. If I’m being honest, Parkinson's gives as well. Primarily in the form of lessons learned. Lessons more valuable than the salary that I am missing out on and the work I used to do. I've learned the value of family and I will never cease to be amazed at the burdens they will take on for you when you are not able. I've learned the value of true friends. The kind of friends who share your burden by showing up week after week, month after month and still put your needs first. I’ve learned to value old friends, the ones you haven't spoken to in years, but are now willing to listen and never judge. I've even learned the value of having a loyal pet who goes with you wherever you go, just in case you fall, she'll be the first one there. There is a beautiful song by Jennifer Hudson that captures that sentiment exactly, called Burden Down. It goes like this:
For all I’ve done, I’m alone
Just for a moment can I not be strong
How ‘bout now
Wish I knew how, oh to lay this burden down
What is the most valuable lesson Parkinson’s has taught me? Share your burden with friends and family... let people in, let them help you. It will lighten your load. Eventually you realize, you are not alone, you never were, and you never will be.
The Parkinson’s Foundation is here for you. Call our free Helpline at 1-800-4PD-INFO (1-800-473-4636) weekdays 9 a.m. to 8 p.m. for emotional support.