Ellen Bookman
The "CAN'T" days suck.
Life is funny. It throws many curveballs. Some we catch, and many we don't.
It's those days where you feel defeated and lack the energy to see the light at the end of the tunnel that build character. I never believed this. I looked at adversity as an unnecessary evil, and, at times, let the lessons quietly slip by me.
You get used to playing the role that is expected, so no one sees you struggling. At times, you may even smile through the CAN'T days. Oh, how would I know -- I have never smiled through a CAN'T day in my life. Recently, I realized that I wasn't kidding anyone and people started to notice.
Was it all those rapid fire days without smiling, lack of focus, stress, anxiety, anger and depression that gave it away?
My work and personal relationships were suffering. I felt lost and sorry for myself for at least a month. This means not working out or wanting to socialize...all the things that usually make me feel better. Mostly, I was angry at what I though of as people pointing out my flaws and judging me.
Were they?
I now know that everything they said was true, and it doesn't matter the reasons -- everyone has problems. What matters is climbing out from the hole that I dug for myself. I let this happen. I need to fix it. I started by getting over myself and recognizing that the CAN'T days are normal.
Knowing the CAN'T days are normal, I feel compelled to share with others diagnosed with YOPD, that, while the diagnosis is definitely fraught with ups and downs, there is hope and light at the end of the tunnel.
So, if you're wondering what I have been up to, and why I am so fricken stressed out, you need wonder no more.
Based on my "horrible" diagnosis and the chance meeting with Sarah at boxing, who became my mentor, YOPD Mentoring https://www.yopdmentoring.org was born, a program created in 2019 by Livramento Delgado Boxing Foundation, Inc. (“LDBF”) and partners the Parkinson Foundation GA and American Parkinson’s Disease Association (APDA).
YOPD Mentoring matches people with a peer mentor also diagnosed with Young Onset Parkinson's Disease, who, through their own experience, understands the challenges we face as we begin to process and reconcile the diagnosis. A peer mentor provides a comfortable and safe place to share feelings and fears and offers assurance that the initial feelings of shock, numbness, hopelessness, and isolation are common.
On those days where CAN'T is not an option, I spend my time taking professional horseback riding lessons; boxing, playing with my new puppy and Bro Bro, walking in the woods with Lee and hanging out with friends.
On the CAN'T days, I let it happen. I just keep the shovel hidden, so I don't bury myself in a hole.