Someone Somewhere Wishes They Had This BM

Coming to terms with living with chronic health issues is very similar to the five stages of grief: denial, anger, bargaining, depression and acceptance. In the beginning it is very easy to deny. Depending on your particular symptoms and the fact that patients often enjoy sustained periods of remission make it easy to forget you are sick. The disease itself is something of a specter, a shape shifter who shows up at the most unexpected of times and circumstances.

In the most basic of terms lupus is a disease of the immune system. Essentially the body’s immune system becomes hyperactive. In its diligent defense it loses its ability to distinguish between legitimate foreign antibodies and healthy living cells, tissues and organs. In an ironic and darkly comic way it could be viewed as the ultimate in self loathing since the body literally turns on itself and becomes its own worst enemy. In its most minor form, a patient can experience periods of mild joint discomfort, fevers, rashes and fatigue. In its most severe form, it can be fatal.

The double whammy about the grief cycle and lupus is that it can feel a little like the movie Groundhog Day. Because of its Madonna like image reinventions and Cher concert costume changes you find yourself revolving through the grief process again and again with each large flare or set of new complications. Instead of becoming easier to deal with over time, it often seems to become more difficult to face the now familiar and dreaded stages. You find yourself angrier, sadder, more brash, even reckless and bold with denial. And you develop a flair for deal making that would drop jaws at a used car salesman convention. “I promise I’ll eat better, sleep more, take all my meds as prescribed….on an empty stomach, on a full stomach, one hour before eating or two hours after, with juice, without juice, not within two hours of taking an antacid, one hour before bedtime, I’ll go to church, volunteer my time to the underprivileged, volunteer my time to animal shelters, donate money to charity, sponsor every 5K running coworker, neighbor, friend, family member, run a 5K, have my oil changed religiously every 3000 miles, learn how to change my own oil, teach underprivileged kids how to change oil, sponsor homeless animals to run in 5Ks supporting oil change awareness."

A lot of time you spend as a patient is spent waiting….waiting for your name to be called, waiting to test results, waiting for a bed to open, waiting to be admitted, waiting to be discharged, waiting for the technician/doctor/nurse/nurse practitioner/physician’s assistant, fill-in-the-blank-ologist/resident/ fellow/attending/surgeon, waiting to get better, waiting to get worse. And to be honest, the environs are anything other than stimulating or comforting. Through the years I’ve had to learn to pass the time, muddle through and just plain soothe my fussing inner baby.

Hospitals remind me a bit of the Caribbean during hurricane season in that it combines the possibilities of breath stealing beauty and miracles with the threat of absolute devastation. A mix of the best and the worst life has to offer. Each time I am there it occurs to me that this is the best day and the worst day of someone’s life. While I’m waiting to pay $4 for a cup of coffee and the hospital Au Bon Pain while wondering which expressway to take home, someone has just received news that will change their life. This day may blur into the week, into the month, into the season for me but for someone else, this day will forever be branded as “The Day Such and Such Happened”. I’ve also worn the hospital socks on the other foot and found myself wanting to scream “DON’T YOU KNOW WHAT JUST HAPPENED TO ME!?” at the man who has pressed three different floors in the parking garage elevator because he knows he’ll remember what floor he parked on when he sees the lobby color.

Eventually a mantra of sorts evolved out of my experience. Whatever the symptom, the discomfort, the pain or the procedure I began to think no matter what, someone, somewhere wishes they were me. Someone somewhere is worse off than I am and might even consider me lucky. I concentrate and repeat this phrase with the conviction of a monk. Someone somewhere wishes they were me…someone somewhere wishes they were me… someonesomewherewishestheywereme…so_____ some____ w_____ ___ ___ _e….sosomewe…So Some We. So Some We.

In the months prior to my wedding, (The most photographed day of your life! According to one particularly enthused photographer hopeful), my hair began to fall out. A side effect of a medication I was taking, I felt my hair drift like tumbleweeds down my back as the days leading to our wedding blew past. How much is going to fall out? When will it stop? How will I clip my beautiful veil to a head with no hair? So Some We…Someone somewhere is wishing they had someone to spend their life with.

When the gruffly apologetic paramedics struggled to carry me down to the ambulance from my third floor walk up in a wheelchair stretcher, bobbing and weaving in what was perhaps the worst freestyle version of “Hava Nagila” ever… So Some We. Someone somewhere is uploading a Hava Nagila disaster video to YouTube much to the horror of the star celebrant. Someone somewhere is pausing, phone in hand, wondering how they will pay for an ambulance ride, a taxi ride, a bus ride to a hospital.

In the ER at 1:00 AM, after the frowning and rheumy eyed pulmonary consult became tangled in my IV lines and tripped, tearing the IV straight out of my arm and clear across the room where it landed with a splat like a water balloon on a hot summer driveway… So Some We. Someone somewhere has been haggling for months with their HMO, begging for a referral to a pulmonologist.

During a broncoscopy, a procedure in which the patient is sedated while doctors examine and biopsy the lungs with a long scope, I found myself way too far to the left on the sedation spectrum. Bustling with energy and the efficiency of choreographed routine, the doctors and nurses did not notice that their star performer, layered in sheets, tubes and wires was in fact wide awake. Rendered mute by a mouth full of props, cotton, instruments and cameras my mind reeled as I tried to come up with a way to signal the nurses.

Reaching over sheets and waving my one free arm around the theatrically lighted table I got the attention of a nurse. Unable to talk I tried the only thing left…sign language. I whipped up the sign for stop but the nurse misread it as a wave and returned the ‘wave’ with a thumbs up and a “you’re doing great!” I tried again. This time with letters. Flipping through a mental dictionary I searched for the fastest way to sign my distress. Ow! Ow! OW! O.W. Slowly and meticulously I signed a large O and three fingers representing the ASL symbol for the letter W. I held my breath waiting for a reaction. At which point the well intentioned nurse smiled brightly, nodded and said “Oh yes, OK, we are almost done. You’re right. Just three or four more minutes”. MINUTES?! I dug deep that day but found my So Some We. Someone somewhere is literally waiting with bated breath for a lung transplant.

The first time I slipped on my oxygen cannula only to discover I had developed calluses behind my ears where the plastic rubs the skin, my face suddenly burned with embarrassment. So Some We...Someone somewhere wishes they had ears?

Just a few months ago my Better Half and I found ourselves at the ER for the umpteenth time after a standard issue lupus flare exploded like a late summer wildfire into a full blown attack. Within a matter of hours all of my joints from my jaw down to my toes had swollen to the point where I could just manage a mummy walk and saw stars when I tried to sit or lay down. Lying on the ER gurney waiting for IV steroids and pain meds I rocked from left to right to give each side a one second rest from the pressure. Seconds turned into minutes, minutes rolled into an hour. Apologetic doctors and nurses poked their heads in periodically to assure us we had not been forgotten. The ER was swamped and the pharmacy was backed up and they were doing the best they could. I fantasized about the pain relief to come…how instantaneous my body’s response would be, how quickly it would try to rebound once the cycle of inflammation and pain was broken.

I turned to my Better Half and began the familiar refrain. A game he had played with me on many occasions. “But someone…” I slowly sniffled, “…somewhere”- He cut me off. Standing to kiss me lightly on my forehead, the one place he knew wouldn’t hurt, he said “No Hon. No one wishes they were you”. And there it was. Acceptance. To the casual listener he probably sounded like a total asshole. “Hey did you hear what that jack hole in Bed #8 just said to his poor wife? She’s in there crying her eyes out and this douche just told her no one would ever want to be her”.

But his words were a release. His words said that acceptance of my disease did not equal defeat. I could lose a battle here and there and still win the war. Not looking at the bright side did not mean I would wilt in the dark alone. Allowing myself to plunge to the depths of despair might just mean that the rise back to the top would be all the more warm and buoyant.

For many years So Some We was a comfort. A consolation. And it still is on some days. Things could always be worse. But I had failed to consider the flipside of So Some We. That occasionally things couldn’t be better. Now on better days So Some We is not just a rally cry offered to motivate a shell shocked infantry. First spoken shyly to myself through a blush, I’m slowly learning that So Some We can also be a boast. Sitting here on my deck, in the languid sunshine of a gorgeous late summer afternoon. Enjoying pizza Friday and a Netflix delivery of Dexter with my husband. Inhaling the decadent scent of a crisp hardcover book. Snuggling our new fuzzy black and white kitten on my lap as I sort through the day’s mail…Someone somewhere wishes they were me.