Val’s mini TED talks for ME/CFS and Lighting Up a Hidden World: CFS and ME
Real-life stories from Arizona, March 2017: Today I managed my own mini-version of a TED talk about ME/CFS, and Lighting Up a Hidden World: CFS and ME, to the local Cave Creek chiropractor and masseuse; the people who own and work at the nail place where I get my nails done when in AZ (I get bored and that is something I can do); and the Lyft taxi guy (who is a chef awaiting his senior job at the local huge Marriott resort) who ended up taking a picture of the book, had a long chat about celiac disease and how chefs view it, and took the book website to share with his friends.
(On different days, this “talk” was with the young dietitian I sat next to on the plane going to AZ and the PhD teacher of nursing, who is well versed on CFS and environmental illness, that I sat beside on the way home -- And no, I do not start conversations on the plane. I wait for people to speak to me if they want to.) Isn't that funny? Imagine if we were well, the work we could do.
Anyway, back to my mini-TED talk day: the journey ended up at a friend's residence in Fountain Hills... a senior’s lodge. Bonnie and her husband, Bill, lived across from us when we had our winter home in Fountain Hills, Arizona. She has M.S. and is a bit older than us. She and her husband were an integral part of the community where we lived. When I would come there and do my 3-day travel crash, she would come and put a yellow rose on the door. I never forgot that.
Over the years I was there...winter 2012/2013 and 2013/2014, many of the neighbour ladies helped with editing, advising, etc. of what was becoming a large community project. Bonnie, who was a former school teacher, spent hours going over the side notes with me for my own story.
Well, since then, we sold our place there, Bonnie’s husband, Bill, sadly died of cancer, and she broke her hip, ending up in a wheelchair permanently. The last winter I was in Fountain Hills, she moved to a seniors place close by and I visited her there once...but I haven't been to AZ for three years now and nobody seemed to know where Bonnie was currently living.
It was my mission to find her and present her with a signed book. Her name is under the Collaborator section so you know how important her contribution was. So I found someone that did know where to find her, took my books along and a rose in a vase that said "Peace" for her, and hired a Lyft driver for the 40-minute ride. She greeted me at the door, showed me to her lovely room, (a worker there pushed my wheelchair as I thought the walk might be long...and it was) and I signed the book in front of her.
She was thrilled! I will never forget the way she leafed through the book shaking her head. She noticed the design, font, headers, footnotes, poetry layout, where it was in bold or changed font...and she also noticed the weight of it as it is quite heavy to hold! She loved the color of the cover, the candle, and the white print on the back cover. I had never seen anybody appreciate the finished product like that.
Bonnie will be busy reading and sharing with her residence friends for a while I think.
She came with me to the door in her electric wheelchair while I pushed the wheelchair I got a ride in to her room originally, which carried the heavy bag of books and my purse on it. My husband was waiting outside to give me a ride home. She said goodbye with a tear in her eye, full of gratitude. I felt the same.
There are many people to thank when writing and compiling a book like this. But one of the special groups are those who took an interest in Lighting Up a Hidden World: CFS and ME, even though they do not have the illness nor are directly affected by it. I learned that many people care and are willing to help in a project that can really make a difference!