What’s the first thing you do when you get a new medical diagnosis? Or even before you get a definitive diagnosis, but you suspect something is wrong? Or someone mentions some illness to you and says you might have it? Or you keep noticing a distinctive symptom?
That’s right; you google it.
The internet can be a dangerous thing in the hands of a fearful patient. The medical community used to keep people in the dark “for their own good” when they had cancer or other life-threatening diseases. The god-like doctors of that era have been replaced with patient advocates and rehab settings where we ask patients what their goals are. So while being informed and educated about your disease can alleviate fears, and help patients feel in control of their health, it can also be very dangerous. Being in the dark has its benefits. In an internet-accessed world with webMD at our fingertips, no one has an excuse to be uninformed about his/her health.
After I had my diagnosis, I still had months to stew, months to wait for my June 21st surgery date. I was at the time working as a preschool assistant teacher. The kids went down for a nap after lunch between 12:40pm and 2:30pm. The lights went down, and the kids actually slept. There was very little I could do, sitting there in the dark. Sometimes we tried to prepare for art projects, but next to the quiet breathing of preschoolers, the sound of cutting construction paper, or sorting beads magnified in the darkness. We had blinds on all the windows, and a black-out curtain on the door; even the bathroom light was off. There was no way to read, to journal, to see knitting stitches – not that I could knit – so I turned to the computer each afternoon.
I learned about my treatment options, the incidence of AVMs, the possible outcomes – favorable and disastrous. While statistics on the prevalence of AVMs vary greatly (from 5 to 613 per 100,000), by some estimates, AVMs are as common as cerebral palsy. Yet no one has ever heard of an AVM. They’re about 1/6 as common as aneurysms, and people have heard of those. I knew it wouldn’t be likely to find an AVM support group in on-line, let alone in person, and I needed to distract myself from statistics such as “4 in 100 people with AVMs will have hemorrhaging strokes in a given year”. I had 2-3% chance of bleeding each year. The mortality rate from a initial bleed is about 10%, and this increases with subsequent bleeds. I needed to stop thinking of my AVM as a time-bomb. I started referring to the potential hemorrhage as “blowing a gasket”, hoping to inject some much-needed levity into the situation. It didn’t work. My mother still couldn’t use the words “brain surgery” to talk about what was happening.
One day, while the children in my care were dead to the world, I found a website hosted on generous bandwidth by the University of West Georgia by a man named Bill Maples. (http://stu.westga.edu/~wmaples/aneurysm.html) This is a data-free site. It is a support network for families, friends, sufferers, and survivors of AVMs and aneurysms. It consists of narratives written by the very same folks in need of support and camaraderie. I latched on dearly. Too many stories ended in the death of a loved one, including young children. Too many stories chronicled the ongoing struggles faced by people discovering new neurological deficits and unending complications caused by the AVMs and aneurysms.
I sat down that May afternoon to compose my own narrative. What follows is an excerpt from my AVM narrative I titled “My Summer Plans”:School can be both a respite and a dangerous place for my thoughts about my impending surgery. While I’m active, I have virtually no down time, and I have to devote all my energy to the school day of a three- or four-year old. They captivate me from about 7:55am until 12:40pm, and after they’ve all brushed their teeth and used the toilets, they hit their nap mats. They get ready to slide into dreamland for about two hours, and I’m left to my own devices, since comatose children require little or no upkeep. And while I’m here, listening to their soft breath, quiet lullaby music, and the gentle whirr of the computer, my own mind has time to wander. Though my work here allows me to escape the reality that goes beyond the innocent thoughts of a preschooler, I still dip my toes in the Real World. The phone rings and it will be Evelyn from Dr. Zager’s office, scheduling my fMRI. I will scoot by second grade and think about Danny, son of the famous vascular neurosurgeon who will slice into me this summer. And sometimes, all it takes is some idle time in the classroom. Two hours is a long time to read, or work on any project in the dark on 18″ preschool tables. It’s even long to stare at a computer and do mindless e-mailing and google research about foam cheese hats. All I need is to type “AVM” into google, look at my daybook and see some medical appointment scrawled in. It all comes racing back.
I will include more from this narrative in the next post. I would rather include it as “source material” than paraphrase the key plot elements, because it captured the fear and uncertainty of what lay ahead in that moment. I can reflect from the other side of surgery and recovery, but it won’t be as real as it was that afternoon as I sat, crying into the keyboard as I typed in the dark.read from the source...
as for me... I suck.... I don't have anything to add...
here have some youtube...
Elton John-Tiny Dancer
and that brigs up Kathy Wyatt... I thought I had a connection with her... but for the last several months I got nothen...so if you have seen her... tell her I have been thinking of her.
David Bowie - Ziggy Stardust