Last February I attend the Galiano Literary Festival. After listening to Robyn Michele Levy's author reading, I got up from my chair, marched over and bought her book.
My reading adventure: Most of Me: Surviving My Medical Meltdown is a bravely honest book and as such isn't an easy book to read. Robyn writes frankly about the onset of Parkinson as well as how it has changed her. But there are some heartwarming, even funny, moments too--these she shares equally as generously.
At times, Most of Me reads like an instruction manual for those who have been newly diagnosed with Parkinson. For example...
' "I'm really scared to tell Naomi."
"Of course you're afraid. It's such a scary thing for you to have to deal with and to have to tell your daughter."
"This is going to ruin her life."
..."No it's not...She's a teenager...She's not thinking long term, just how it's going to impact her right now. She'll go back to her life afterward."
"How much information do you think I need to tell her?"
"I would try to keep it simple. Explain the biology. Answer all of her questions. And if she doesn't ask any, don't worry. She'll ask when she's ready to know."
"I'm afraid that Naomi's memories of me, back when I was vibrant and healthy, will be displaced by this disease. She'll forget who I used to be, what I used to do. I'll just be her sick mom."
"I hope she doesn't lost those memories. And if she does, we'll just have to remind her." (p. 38 - 39)
And if living with Parkinson wasn't bad enough, Robyn finds little lump and big blob in her breast.
I always wondered what my mom went through. To my enquirers, she's usually said, "Fine. And how are you?"
There were things she refused to share with me; there were things she wanted to shelter me from.
Robyn shatters the illusion of breast cancer being fine.
'I wake up (after the operation) horrified and hazy amid a commotion of concern. Everything hurts. Something is missing.' (p. 119)
'I am too afraid to look. The nurses who change the dressing on my vacant lot assure me this is normal.' (p. 120)
'Recovering from a mastectomy is draining. Literally I've got a god awful drain dangling from my side. Apparently, if Dr. Chung hadn't installed it after removing lymph nodes from my armpit, a lot of bodily fluid would have nowhere to go. I'm sure this tubular contraption is better than having my arm balloon up. Still I can't stand the sight of it. Which is why I have obstructed the view of its blood contents by slipping a sock on top of it.' (p. 124 - 125)
'While I am convalescing at home, nothing feels comfortable. Not my pajamas. Not my bed. Not the couch.' (p. 121)
Still despite it all she retains Robyn keen sense of humour. 'My remaining time in hospital is spent under the spell of morphine. Or as I like to call it, "More Please".' (p. 121)
Quotes that will stay with me...
'[T]he day someone is diagnosed isn't the first day of their disease.' (p. 44)
'I feel a sudden sense of urgency deep within me. I close my eyes, and imagine a lined sheet of paper. At the top, I write "To Do."...I open my eyes and feel my horizons expanding. Who knows? There might be more of me, after all.' (p. 243)
I'm so glad that I took this journey with Robyn. I know it changed me, made me stronger. The full effects of which may take years to unfold. I thank her for helping me to see more clearly how courageous my mom truly was. I statue my mom, Robyn and all the others who fight heroically.
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