Written by Amy Carlson, co-founder of Soaring with Hope & Davis Phinney Foundation Ambassador
A few months after my Parkinson’s diagnosis, I was sitting in my office attempting to write one of several sections of a project management plan. My left hand was laggy and my typing was gibberish. It was close to noon, and I was hungry. Frustration was running high and something unfamiliar was tightening my chest. I couldn’t take a deep enough breath. The air conditioning fan was so loud, and it was relentlessly whirling in my head. That loudmouth manager Charles was on a phone again and why exactly couldn’t he find a volume under yell?
The insides of my shoes pressed hard against my feet, pinching my toes.
The sharp, high ping of my cell phone alerting me to yet another email jolted through my body.
My bra was digging into my chest and preventing me from taking a deep breath.
I could hear and feel the throb of my pulse everywhere in my body.
I had to get out of my office. The urgency to move, to run, to get out, clawed at me.
My steps clipped down the hall in a faster and faster staccato. My left foot seized with a vicious cramp, my toes seeking the back of my heel in a torturous helix that had me blindly waving to find a wall to lean against.
The bathroom was five agonizing steps away.
I hobbled toward it, found the handicapped stall and slid to the floor in the far corner.
My mind had splintered so that I was both in myself sliding down into a yawning void of stampeding anxiety while also clinically observing this complete meltdown of the self, my self, myself.
A grown woman with a masters degree and a high paying job was lying in the fetal position on the tile floor of the handicapped stall of the bathroom. (Why do so many Earth-shattering and life-changing moments happen on the cold tiles of bathroom floors?) Her hands were clamped over her ears, fingers white with the pressure of pushing against her head. Her mouth worked like that of a fish, gulping in the air but expecting something else. One shoe was kicked off the foot clenched into an impossible position.
At age 44, this was my first anxiety attack.
A few weeks later, I walked into a Davis Phinney Foundation Victory Summit® event in Denver. My parents were with me, and we were there to hear about Parkinson’s Disease. By the end of the first session, I was feeling more encouraged than I’d been since my diagnosis. By lunch, I was downright giddy with relief, and I boldly walked over to Davis Phinney himself to thank him for this amazing conference.
He was slow, Parkie slow, deliberate. He held each of my hands lightly, squeezed them and leaned in to kiss my cheek. His eyes welcomed me with compassion, determination, joy and a touch of sorrow. I was a member of the club, and it was going to be okay. My eyes filled with tears, not of terror but of gratitude and hope.
Since then I have welcomed others into this exclusive club, just as Davis welcomed me. Two of the people I’ve welcomed are my good friends Clara and Naomi. I’ve watched tears spill onto their cheeks in the most difficult of times, and I cherish the strength and hope they give me. The feel of Clara’s hand gripping mine with warm support and fierce friendship. The smooth peace of Naomi’s face when her smile reaches her eyes and her ebullience rolls over me.
HOPE. We give each other hope which is a multifaceted gift to a person with Parkinson’s. It helps us as it would help anyone else, but there’s an added dimension to feeling hopeful when you’re living with this disease. The very presence of hope in the brain creates dopamine. That one neurotransmitter we so desperately need. So when my friend Naomi first suggested the Soaring with Hope project, I was drawn in and nodded my agreement immediately. How could I not? It’s a work of art dedicated to spreading hope through the Parkinson’s community.
Join Us and Soar with Hope
Soaring with Hope for Parkinson’s Disease is working to give hope and raise awareness for Parkinson’s. To join us in creating 10,000 origami cranes that will be showcased at the 5th World Parkinson’s Congress (WPC) in Kyoto, Japan, in June 2019, visit http://soaringwithhope4pd.org. Each crane will have a message on it from someone with Parkinson’s or those affected by it. To share your message on a crane, complete this form. Or find us on Facebook and Twitter.
Want to Win a Travel Grant to Attend WPC in Kyoto in 2019?
Two lucky participants will receive a travel grant of $2,500 USD to attend the 5th World Parkinson Congress.
The raffle runs through November 30, 2018. Winners announced in December 2018.