There are times when I’m grateful for Parkinson’s disease. This doesn’t happen often but it does happen. I’m grateful because I’ve met some people who have guided me from newbie to a full-fledged member of the group you never wanted to belong to.
When I was diagnosed I went online to find a support group. I found one called The Parkinson`s Support, Chat, and Social Community. I made some rookie mistakes and asked some politically incorrect questions but the group accepted me anyway, even with my macabre sense of humor.
The group is known internally as the “Always Awake Club.” If you can’t sleep, somewhere in the world one of our members is awake and willing to chat. It’s not uncommon to spend hours chatting with someone you don’t know but have something in common.
Not long ago Shelley Edwards happened to be online and I was lucky enough to share some one-on-one time with her. Shelley lives in the UK and doesn’t sleep well because of dyskinesia and severe tremors. She has lived with Charcot-Marie-Tooth disease for nearly 30 years and Parkinson’s for the past six.
I expected that Shelley would be bitter about life. I discovered that she’s not as long as she’s able to feed her soul through photography and writing. She looks forward to each day because it affords her the opportunity to take pictures of bees that hover around the flowers in her garden.
She’s a realist who has lived with two autoimmune diseases for many years. She’s perfect for a newbie trying to make his way with Parkinson’s. When I caught Shelley she was rummaging through some old family albums.
KW: I find myself looking at photos too. I look at pictures of myself when I was a kid and wonder how life could have been different.
SE: I know. I’ve been looking through old photos of days gone by and I remember times when there was no pain or illness. There were years of fun and laughter, when life seemed so simple. Who knew what would become of me.
My memories fade in and out. I remember some things so vividly. It frustrates me to understand why I remember some things but others not all. I wish I could remember everything.
KW: I remember things vividly too. But sometimes I get caught, it’s like my brain isn’t connecting a memory with my mouth and I can’t get it out when I’m talking to someone. What are your most vivid memories?
SE: Dancing and moving my feet move to the music. I want to glide effortlessly. Thinking about it now, I wish so much that I could dance with my husband, Andy, in our living room. No music, just us as if time was frozen. I want to be Ginger Rogers to his Fred Astaire. Maybe, if we’re feeling brave, we might be John Travola and Uma Thurman from Pulp Fiction.
KW: I want a different life. I’m disappointed in what I’ve become and the career choices that I didn’t make. I just had my two-year anniversary and it still boggles my mind that I have a brain disease. I still can’t get my head around it. Would you want a different life?
SE: I’d want everyone in my life to be the same, but I’d have a different body. I would have a career in retail, or as a flight attendant, or in the hospitality industry. I would want to look after my family the way a woman should – cooking meals, being a good mother and wife. I would love to play football (e.g. soccer) with my grandsons, teach them how to juggle, how to do gymnastics and run with them. For me, family is paradise.
KW: I’ve been around the world many times. Always for work. Always being driven from meeting to meeting and I rarely looked out the window. I’ve been to Paris 12 times and haven’t seen a thing. You went to see the sea in early July. Do you yearn to see more of the world?
SE: Of course. The Galapagos Islands and Seychelles are a good place to start. I want to walk on a beach holding Andy’s hand. Having a pina colada on the beach with nothing to do and all day to do it. I want to swim in the ocean and feel the warmth of the water against my skin. Andy wants to visit Spain and Norway. I guess I could make the sacrifice and tag along.
KW: You checked off an item on your bucket list. Tell me about it.
SE: People in America often ask me if we have the Fourth of July in England. Of course we do, we just celebrate it differently. When I woke up this morning I thought it was going to be just another day for me. My youngest daughter, Charlie, and my mum decided to take me to the sea. I hadn’t been there in ages.
When we got out of the car, I smelled the salt air and I almost cried. I got into my wheelchair and mum pushed me down the boardwalk. I didn’t spend a lot of time looking at the coast, I was dreaming about being in the water.
I took my walking stick, my daughter on one side and mum on the other, and they helped me to the water. I stood knee deep in the sea. Me. Alone. With my thoughts and no pain for the first time in forever. I was living my dream.
Kevin Woo is a freelance writer based in San Francisco. His portfolio can be found out www.kevinjwoo.com.