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Showing posts from March, 2012

The Eyes Have It

Going to a funeral is one of the easiest ways to get friends and family members talking about what they do and do not want to happen at their own funeral. Perhaps it's some element of keeping up with the Joneses or a general affinity for having an opinion about most anything — services we like we hope to emulate, services we dislike we tell our loved ones in hushed voices, "Don't you ever let them do that to me." 
When I was young, I'd been to more than half a dozen funerals before I made it to my first wedding. It wasn't that my family was morbid — they were just old. I don't remember much by way of specifics other than always thinking that I liked the fresh flower arrangements better than the fake flowers; that caskets seemed really big and heavy; that it was weird to be in a room with a bunch of crying people; and that the person being buried had on way too much makeup. It was the makeup that first clued me in to the fact that a body is not a person. …

Hospital Give and Take

Generally speaking, I'm a good hospital patient. There is little I require.

Get my nasogastric tube out as soon as possible — those things hurt like hell. I'll happily consume all the Ensure, Jell-O (a little variation please), popsicles, yogurt, pudding, juices, and fresh fruit and veggies you give me — but I'm not going to eat a lot of the over-cooked, steam re-heated, unseasoned, unidentifiable, depressing dreck that arrives under that taupe plastic plate cover a la food services. As soon as you say that I'm allowed to get out of bed, sit in the chair, or walk the halls, I will with diligence — but I'm not going to page my nurse every single time because I know nurses are busy and my family caretakers and I have been through enough surgeries to know how to roll to one side, get up slowly, and shuffle about without injuring anything, falling, or screwing up the various IVs and lead wires. So if I'm in bed asleep or resting, that means I'm worn out — I do…

Medicine X's Alliance Health ePatient Scholarships

It was at some point this past summer that my favorite massage therapist mentioned Stanford professor Abraham Verghese's book "Cutting for Stone." With her feet firmly pressed against the small of my back, she said I should check out the medical novel, loosely based on Verghese's time spent growing up in Ethiopia and his choice to become a doctor. I scratched in the title on my mental list of books to be read. My interest arose from my desire to combine medicine and literature in a work of my own one day.

Only a month or so later, a tweet came across my feed from an anesthesiologist and professor at Stanford issuing a call for medical patients to apply for scholarships to attend the Medicine 2.0 conference. The conference would bring together the two seemingly disparate worlds of healthcare and social media. Verghese would be a keynote speaker. I took it as a sign. I applied, and to my great delight, was selected to be one of a handful of patients to join the medica…

I'm Not The Only One, The Lonely One

We feed our bodies, yet sometimes we forget to sustain our souls. My soul connects with stories—those shared without delusions of grandeur or needless hyperbole, those told with stripped-naked honesty and reflection. Seldom are there stories that move me enough as to bookmark passages and incorporate them into my life's path. I'm picky that way.

Being a patient is lonely. Being a rare disease patient is even lonelier. I've already confessed to having disease envy because those with more common diseases have so many more resources and other patients with whom to connect. But even common diseases once were misunderstood, feared, incurable, and unstudied. I am ashamed to say that I never considered this fact until recently.

I met Dr. Abraham Verghese at Stanford University where he was a keynote speaker at the Medicine 2.0 conference. I was already well into his novel "Cutting for Stone," and having just learned of his autobiographical work "My Own Country,&q…