Profiles of Hope - Stories from Norris Center ALS patients
Change Maker and ALS Patient
The Challenge of Change
(Excerpt from Seasons, the Newsletter of the Aurora Dawn Foundation & Marty’s Place)
I love change. The adventure, the unpredictability, the risk-taking it involves is exciting…and life giving. I couldn’t live (nor die) without it. That’s why the changes I’ve been experiencing since receiving a diagnosis of ALS last October have me excited.
For a long time I’d thought and expressed publicly that I didn’t want to drop dead of a heart attack or get hit by a sixteen wheeler or a brick on the noggin. Better it be a process, something terminal but without pain, so that I could “savor” the process, experience the changes and have it all be part of the grand circle instead of a screeching drop off.
We must be careful what we hope for. In this case it seems to be coming true. Granted Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease) is a devastating syndrome to pack around, but what terminal disease isn’t? The way I look at it is that all living things carry challenges around with them. These can become curses or else blessings depending on how they are viewed. An attitude of gratitude is the secret ingredient. As an often seen bumper sticker reminds us, “Shit Happens.” But if turned under properly, watered well and kept warm, wonderful new life can spring up to bless all concerned. Now that’s CHANGE! And it’s what is going to happen in this case with me.
I’m glad I don’t believe in “death.” I see it rather simply as CHANGE…into a deeper way of living. What a kick, huh?
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Author and ALS Patient
Coni Rainbow Foster
The first novel by Coni Rainbow Foster "Path of Dreams Tale of a Wandering Soul" was written over one year entirely with her chin. The story explores her two-year travel experience during the 1970’s hitchhiking solo across Europe, Africa, Asia, and the Middle East.
Coni’s ALS has left her confined to a wheelchair and her first novel emphasizes the importance of not letting go of your dreams despite major life-changing obstacles many of us face. 'In the course of my disease, I have kept my dreams alive, and I believe that is keeping me alive as I live with ALS," states Coni. You can purchase or download Coni’s novel on-line at www.lulu.com.
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Artist and ALS Patient
At 42 Mike is paralyzed by ALS, unable to breathe without a ventilator his body is in his words "simply a support system for my brain." Always a traveler, Mike has enjoyed exotic destinations of which many of us only dream. Mike is paralyzed from the neck down, however before completely losing the use of his arms he developed a passion for digital painting. To create digital art, the artist uses traditional painting techniques to create a painting on a computer without photos or scanned images. Now, Mike creates his digital paintings using only his head. He moves his head side to side and up and down to move the computer curser, activating the mouse button via a small switch next to his face by bulging out his cheek. Each painting takes from eight to 200 hours to complete.
ALS is a life altering diagnosis, but Mike looks at life with rose-colored glasses. Before he became incapacitated by his disease, he was a workaholic, he now has learned to really feel empathy for others, and is more present in his life. Mike states, "I appreciate life and feel so much more alive. My life is truly more rich and full now than during any previous time. This experience has taught me the secrets of enjoying life, regardless of your circumstances. I doubt if I would have ever had my eyes opened to this knowledge if it weren’t for ALS. I have lost the use of my body, but in return, my mind and spirit have been set free."
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Forbes Norris MDA/ALS Research and Treatment Center
The California Pacific Neuroscience Institute at CPMC in San Francisco features some of the top-rated neurology physicians and neurosurgeons in the San Francisco Bay Area, Marin county and Northern California.
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