“If I got rid of my demons, I’d lose my angels.” – Tennessee Williams

A friend once described me as “An Angel with an Edge.”

She probably described me with the greatest deal of accuracy than anyone has had the ability to do so.

I would tell you that I have remained, at the core, the same person I’ve always been. I can tell you that context changes so many things – I’m probably edgier yet more compassionate, sarcastic yet more tolerant, understanding of the deepest feelings of loss yet more appreciative of the things I hold dear. I’ve seen hard working soldiers fighting in the trenches of a bureaucratic warfare. I’ve been anguished by decisions that affect my daily life  made by people who “call the shots”  against whom I’d wager a wild guess have never given themselves the multiple shots that I do each week. I’ve witnessed the discrimination of one plant that could provide relief for so many with my conditions that I guarantee would only serve as a “gateway” to a more normal life for me. I’m spending a lot of time swimming in a “donut hole” – and truth be told, I don’t even really like donuts. That’s okay – I eat largely through a tube. It exits through a bag. My bikini days are SO over. Contextually, I used to think success was measured by an office with a door and a Volvo (I’m either 50% a failure or a success, depending on how you look at it – I got the door). My grading scale is adjusted a little differently these days: getting dressed? B+ Applying eyeliner? I’m practically a Rhodes scholar.

An inspiration? I don’t think so. I’m just too stubborn to die when my vital signs indicate I’m headed in that direction. Whatever direction I am headed, I’ve learned a few things along the way. There are many things that need fixing for those who live a life like mine SO THAT FEWER can experience a life like mine – and just get on to the “living” part. Perhaps those things must exist so we can can appreciate when the light shines on a time with new causes of concern and new reasons to rejoice. Maybe it’s all a part of progress – I haven’t worried about the plague or slept in an iron lung lately. I know there are truly good people in this world and people who have MADE DECISIONS that make them evil and ugly. There are many shades of grey in between, however – as I type, I am snuggled in the warmth of my favorite sweatshirt -heather grey. Grey can be beautiful – again, it’s all apart of context. I believe in the integral nature of a person, a philosophy, a science, a psychology. We are parts of a patchwork quilt that  makes up the fabric of our lives. The things that hinder me make my quilt so colorful – and it allows me to tell a story. Each square – good or bad – comes with it’s own cornucopia of “remember whens?” and promises of tales yet to be told.

Health is a vehicle that can, with a little proper maintenance, take you where you want to go. With poor choice or drawing of the fabled “shortest straw,” I’d tell you” WHEN IT’S GONE, YOU’LL MISS IT” : driving, working, deciding on whether you want to have children..and the little stuff like meeting a friend for dinner (eating in general!), driving back to the store when you forget something, making plans, KEEPING plans, sleeping through the night. I’ve learned that some nights I just don’t get to listen to the rhythmic cadence of my husband’s breath in sleep; I watch the clock, listening for the “squeak squeak squeak” of the nurse’s Crocs as she journeys to my room from the Pixus that holds the juice that I will watch flow from syringe to tubing to the port in my chest to every part of me – the parts that remain, anyway – that kept me falling awake in the beginning. It won’t last long;  it’s hardly a panacea. A child’s aspirin for a shark attack, perhaps. Does it suck sometimes? Quite frankly, yes it does. I do not rememeber a time when I have awakened without pain for which I have run out of adjectives, superlatives and expletives alike.  If I was that betting person, I’m sure those who never find the solace of sleep as they listen to bombs falling like rain would willingly trade me places.

I am not simply “Dr.X’s patient,” or “Multiple Sclerosis, gastroparesis, Crohn’s, Room 2204.” I am not merely a chart nor an entity protected by HIPPA. I am a student of many subjects and of life in general; I am a wife to a WONDERFUL man, a daughter, a sister, a granddaughter, a friend,  an artist, a pet wrangler, a patient, a writer, an advocate, a painter, a barista….and from whatever era in life you know me, you know that brevity is not my strong point.

…and though a few months ago they tried to admit me (at 34) to a pediatric ER and I got in on a child’s admission to a movie, here’s hoping this little angel never loses her edge.

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