I have a radical idea. What if we were all comfortable with the iceberg effect, even when we aren't capable of seeing it in others. Can we all just assume that everyone is in pain and hurting from the same cycles of samsara- or in Western language, this thing called life? No one is immune to suffering. Looking over the philosophy section of my bookshelf, the titles of Pema Chodron's books are revelatory:
Start Where You Are, When Things Fall Apart, Fail Again Fail Better, Practicing Peace, The Places that Scare You, The Wisdom of No Escape, No Time to Lose, Comfortable with Uncertainty, Taking the Leap, You are Ugly and So am I...
OK so maybe not that last title. That just might be a typo. My left hand just refused to operate like a "normal" human hand. Dystonia the cruel witch has been spending too much time at my house.* I'd like this particular guest to get her dirty shoes off the couch and hit the road. Our folly is to believe we are alone in our suffering. I have witnessed strangers, even in support groups, turning on one another in bizarre attack mode. It's not unusual to assume support groups would be safe places to land and we'd not take things so personally in our mutual grief. There are non-motor symptoms we'll discuss here soon that are partly to blame for any sharp edges. Depeche Mode reminds us that people are people. We are all tall children.
This beautiful bright day I'd prefer to spend talking with other tall people, the "standing people" as Native Americans called them- a line of old redwood trees at the edge of my yard. Alas, today is for pre-op on an upcoming kidney operation. How can I possibly be so low when the sky is blue, birds are chirping merrily and kids giggle in the street? The body has a mind of it's own. My swollen kidney is blocked by something interior and genetic which has nothing to do with Parkinson's or diet, but the pain drops me to my knees. I've spent hours on the bathroom floor begging for mercy. I've also noticed many things from this lower vantage point, like how the linoleum is curling and the last time the bottom few inches of the cabinets were cleaned properly looks to be approximately 1968. No matter, when you are in such agony you'd prefer to give birth sans drugs twice hanging upside down in a tsunami. At least I know I can take a big hit and it won't kill me.
I don't care how tough you think you are, no human being can take that level of pain. When the ER folks not only recognize you, but inquire about your children and dog (by name), something is off. I've been a lab rat for so long with Parkinson's and various trials that I'd forgotten we have choices in our medical care. Just remember that you can always ask for changes or another specialist. I was being treated for kidney stones (guzzzling water hah!) and waited an additional six months simply because one medical group was not paying attention. Golf can be an engrossing hobby. Taking charge of our health begins with massive amounts of resources and time, each in short supply when we get ill. We can do better and seek other options if we organize and share information.
There are a few ways to map your own health. At the recent WPC in Portland, there were fascinating talks orchestrated by Sara Riggare of The Karolinska Institute in Stockholm and Quantified Self. Check it out at http://quantifiedself.com/. Jasmine Sturr, the 22 year old chemist from Whittier CA astounded a large group by presenting research to prove you can take complete charge of your health without relying only on the medical establishment. Bypassing traditional protocol and the offerings of major drug companies, she designed her own specific treatment and is becoming a powerful agent of change for anyone with digestive paralysis. At 22 I was worried about my hair, getting a date, or my next photo gig. She has been dealing with major health issues since the age of 14 and keeps forging bravely ahead, in spite of extreme fatigue and challenges most of us cannot even imagine. Simple things, like eating and drinking. Iceberg effect, indeed! More about Jasmine here:
Jasmine's QS Talk at WPC Portland:
I mean no offense to the dedicated M.D.s supporting patients, but doctors are stretched and influenced by shifting factors within an industry rabbit hole so deep, I don't know where to begin. Since they have less time with each patient, we cannot afford to rely only on their care. It's a mistake to refer to office appointments as care, when it is ten to thirty minutes twice a year. What will you do the rest of your hours filled with staggering loss of brain and bodily function? Online chat groups and social media connections are filled with Q and A, but enter at your own risk, sensitive souls. Since Parkinson's is an individualized condition, it is imperative that you remain connected to a community and not relying solely on traditional approaches or infrequent office visits.
As the blog progresses, I'll be adding hundreds of links and tips for anyone interested in radical self-care. Please send any links you would like to share to firstname.lastname@example.org. Taking control means knowing what works for your body and lifestyle, continuing education and extreme resourcefulness. Let's remind one another what a liar our private fears can be, then we can get comfortable with uncertainty, because things have already fallen apart and there is no time to lose.
* On Dystonia: