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. A body is a vessel, a physical manifestation. We dearly miss the body, the physical manifestation of our loved ones when it has gone. After all, it is the sense of touch that brings calm — the resting of one's head on a familiar shoulder, the holding of hands, the intertwining of arms. Without being able to touch our loved ones we often become afraid and alone. However, when a life expires and a body is taken away, the person who lived in that body continues on as part of the indelible life force that makes up our world. While we can no longer hold their skin and bones and our hands, we may always hold their love and memory in our hearts. 

Given my health history, I have spent more time than most my age, and perhaps most in general, thinking about how I want my death and the disposal of my body to be. As a society, we shy away from discussing such things because we fear that doing so will bring on death, or we simply do not want to dwell on the fact that death will happen, or we have too little information about what making end of life plans truly involves. I am one who has accepted the fact that — while I have no intention of dying any time soon — death will at some point occur, so I'm going to have as much of a say in the matter as I'm allowed. I don't want to drag out the process for months on end costing my family much in the way of time, finances, and emotional turmoil. I don't want to carry on with a more or less intact body and a shattered mind. I don't want to be in pain. I do want to be an organ donor. My husband, on the other hand, does not — an opinion which, despite nearly six years of marriage, I have yet to change in him and consequently goad him about given an opportunity. Today, having attended a dear friend's grandfather's funeral, the conversation was once again set in motion. 

"You're a body hog," I said. "You won't give up your organs."

"That's because I'm USING them," my husband replied, rubbing his belly.

"I'm totally giving up your organs," I teased. 

"No you're not. That's not legal," he shot back.

"Oh yes it is! It is unless you put it in writing!" I retorted. 

"Well. Just for that I'm going to go watch TV," he said as he strolled out of the bedroom. 

Just a moment passed as he sat down on the living room couch, then called out at me, "I'm going to donate your EYES," he said with evil glee.

Though I have been an organ donor since age sixteen, my eyes are the one body part I have opted to retain. The desire stems from my having had an extensive reconstructive jaw surgery for TMJ when I was young. With my bones rearranged and my face swollen, I could hardly even recognize myself. Only by looking in the mirror and covering all of my face except my eyes could I see that I really was still in there, still myself. My husband knows this and was with me in the hospital when we filled out the paperwork for my advance directive and I chose to include this ocular mandate. 

"Screw you," I hissed, my voice not belying my smile. 

"I'm going to have them put in a jar and placed on the mantle," he cawed. "Or I'll just have them stare at your computer."

He knows me — body and soul. 

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 don't need a pedantic lecture about getting up and moving about and using the inspirometer as much as possible. 

I will take my meds when you give them to me. I will be honest about my need for pain control, and I will  tell you as soon as I notice the pain creeping in rather than wait until I'm a sniveling, pathetic mess. I'll be quiet and calm when you need to draw blood. I'll obediently let you take my blood pressure and temperature every two hours including in the middle of the night (though it's nice of you not to turn on the overhead lights). I will say please and thank you. 

I've been here. I've done this. I bring my own inspirometer and non-slip socks. 

Just please... PLEASE... let me take a shower. 

It was at least five days after my renal, celiac, and mesenteric bypass surgery before my pleas for a true shampooing were allowed to be met. The surgery was, as would be expected, serious. Eight hours on the table gave way to days spent in the ICU where I marked time only by noting shift changes and my parents' clothing during their twice daily permitted visits — new clothes, new day. Finally transferred to the vascular ward, I looked marginally better than raw meat on a stick with my central venous catheter, IVs in my wrist and hand, and the ever present five-lead color-coded heart monitor. Still more days passed. I was eventually allowed solid foods — from chicken broth to fried chicken, which I pushed away and asked, uncharacteristically for Teddy Grahams. I ate the head off of one and declared myself full. 

But more than Teddy Grahams, what I wanted was a shower. Crusty with iodine and tape residue, body oil and sweat, I felt as appealing as construction worker with a home butchery hobby. My hair stood at odd angles completely on its own. My morale matched my personal state of funk. I begged, cajoled, and bargained for a shower. The problem was that I was not allowed to get my incision wet. My incision measured fifteen inches and cut across my abdomen from just to the right of my diaphragm, to my left flank along the curve of my rib cage. I did not yet have back the flexibility and muscle control to bend over such that only my head was in the water.

Desperate, I began to think creativity. "What about plastic wrap?" I asked. The nurse and my mother looked at one another with their eyebrows raised. My mother immediately went to the to the grocery store nearest the hospital. She came back with rolls of plastic wrap, a plastic table cloth, and tape. Gingerly yet snugly we wrapped my midsection, going around again and again. My mother cut a hole in the plastic table cloth and slid it over my head, then tapped it around my neck. We toddled me into the tiled shower stall and turned on the warm water. As I clung to the shower's two vertical handrails with my head bent downwards, mom squirted shampoo onto my hair and proceeded to scrub my scalp with both hands. Water caressed the back of my head, my ears and my forehead, my cheeks, my closed eyes, and my joyous smile. 

With my hair clean, we turned off the water, stripped off my plastic sheeting, and continued on with a sponge bath. I was patted dry, given a new gown, and new socks. I had just settled into bed when the nurse returned to check on me. She blinked with surprise and involuntarily smiled at the completeness of my transformation. Like a wilted flower given rain, I had blossomed.

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 medical innovators, social media facilitators, and creative minds coming together to dialogue about how to improve medicine as we know it.

Going to Medicine 2.0, I already knew several interests I wanted to explore. Despite being a 30-something, I had largely resisted the whiles of Twitter and Flickr, used Facebook mainly to keep up with friends and family (even though I managed two Facebook pages for my employer), and maintained a blog more as a personal journal than as a form of outreach. I wanted to learn more about how these social media forms could better be used and, given my medical interests, how they could be tied in with healthcare. The concept seemed so foreign to me. I'd been impressed when I could find an email address for a doctor, much less actually send the doctor an email and get a response. Medicine 2.0 introduced me to the world of participatory healthcare in which doctors not only had email addresses but in which they actively sought out and interacted with patients via social media. Furthermore, these interactions were affecting in-office visits as patients used applications on their smart phones and tablets to self-track things like blood pressure or glucose readings. A virtual Pandora's box had been opened, and my world was changed.

Given the ideas and the tools, I began to see how I could affect my own influence on healthcare through social media. Free social media platforms were the perfect means by which to share my story and connect with other patients, which for me had been nearly impossible provided the rarity of my diagnosis——intimal fibromuscular dysplasia. Thanks to the Mayo Clinic, a healthcare and social media leader, I connected with my first fellow patient on the hospital's message boards. Thanks to all that I learned and the inspiration I gained from Medicine 2.0, I began a social media-based group called FMD Chat so that fellow fibromuscular dysplasia patients could more easily connect with one another. FMD Chat incorporates Facebook, Twitter, Google Plus, and a blog to facilitate peer-to-peer interaction and spread awareness of what it means to live with the disease. To be able to provide patients with this experience and add to the dialogue has given me a sense of purpose and a way to turn a potentially devastating diagnosis into something good.

All this goes to show that patients can, do, and will continue to influence healthcare in ways great and small——and every contribution is, in its own way, meaningful. Patients' attendance at medical conferences is therefore becoming a new normal. Those who already are activists within their disease communities should seize opportunities such as those provided by Medicine X's Alliance Health ePatient scholarships to attend conferences and learn how to best use social media to provide support; those who are not yet activists should seize such opportunities to learn how to get involved. The word activist may seem daunting to some. Let it not be. An activist is one who is active within his or her own family or local community as well as one who takes part in national organizations and shares his or her story on an international level. An activist is, at the most basic level, someone who cares. An ePatient activist is someone who cares about medicine——be their interest in technical research or caregiving, hospital design or disease awareness, advance directives or doctor-patient communication——and how medicine impacts the lives of  patients and providers.

The application deadline for Medicine X's Alliance Health ePatient scholarships is March 15. Apply. Learn. Get involved. Make a difference. Show that you too care.

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," hunted it down at Books Inc. Palo Alto prior to Verghese's talk. Since I knew that Verghese was an Indian born in Ethiopia, I was surprised when the book jacket to "My Own Country" revealed that the work was set in the Smoky Mountains of East Tennessee—a mere two hours from where I live—and chronicled Verghese's work with the regions very first AIDS patients. Intrigued, I expected to be educated about the author and the AIDS epidemic. I did not, however, expect to connect.

Verghese's story is that not just of himself but of the rise of a terrifying and incurable disease and its effects on patients who were isolated geographically in small rural communities and then ostracized by their contraction of the disease. AIDS had the "benefit" of being an epidemic and therefore subject to much research and government funding. Those of us in the rare disease community do not have this benefit. By the very nature of having a rare disease, we are still isolated and untreated. It is lonely; it is frustrating; it is seemingly unbound to change. I can only hope that the few doctors who dedicate their lives to rare disease are as intimately invested in their patients as Verghese—but more often than not, we rare disease patients have similar experiences to those early AIDS patients, as doctors are unable and/or unwilling to treat us, so we are shuffled off to doctors far away to seek specialized care.

Consequently, the patients' stories are what make "My Own Country" such a work of art and so personally relevant. We patients—particularly chronic patients—each go through a myriad of characters throughout the course of our disease. Our personal characters reflect the five stages of grief—denial, anger, bargaining, depression, and acceptance; yet, at any time we may transition backwards and forwards in these stages since disease and health in general can be mysterious and often come without a clear and predictable course of progression. Regardless of our diagnosis and whether we have come into illness through no fault of our own or by virtue of making poor health choices, we are Verghese's AIDS patients, and they are us. It is from these such patients faced with terminal illnesses for which only the symptoms may be treated and palliative care provided for comfort that we may truly learn how to live. 

"I feel like a bear that's been in hibernation, you know what I mean? I have become a person I didn't know existed inside of me. I know I can make friends. I know I'm respected after people get to know me. And my heart is so full of love to give to them who need it... Life is so precious, Abraham, and there's so many people that don't realize it. So if anything, this disease has made me take a long look at how things were before I got it and afterward. I'm more of a complete person that I ever was. I set goals for myself that I'm determined to fulfill. I am somebody. I'm happier now that I've been in a long time. I enjoy life more now... But I'm also realistic. I know that what I have is like a time bomb waiting to blow up in me and cause this terrible AIDS to begin. But I can't let it rule my life, get into my train of thought all the time and take away the best fight that my body possesses, and that is 'positive thinking.' I'm going to fight this disease with lots of laughter on account of, you know, it will boost my immune system. I've had a lot of sad times and probably a lot more to get through. But it helps having very special friends to talk to... my friends in support group are even more special to me because they know what I'm going through. They've been through it themselves. But I tell you what, Doc, there's much more to life that sitting around waiting to die." — Vickie, HIV+ patient, "My Own Country" by Abraham Verghese