One Pill To Rule Them All…

Doesn’t exist.

The idea that one can pop a pill (or two or three) and cure what ails you, reset us to our base configuration, is a beautiful one. Like when we were kids and had a fever and mom would find the bottle of that orange flavored St Joseph’s Aspirin for Children (before anyone knew what Reye’s Syndrome was) and we would feel better or if it was an ear infection we would be cured by some horrible tasting anti-biotic that turned our poop into something resembling well over –cooked spinach barfed up by our cat . Take a pill and get yourself cured or at least far along the way. And the weird poop corrected itself in time. Always.

I take five pills a day now, presuming that I do not get a headache from them. The side effects of one are symptoms already in place that another is supposed to help and that one has its own side effects as well . The silver-lining? There are far worse medicines I could have been put on.  Instead of gaining weight, I am losing it, for example.  For that I am grateful.

The pills. None of them will ever cure me. They manage symptoms. Some of the symptoms.  Trouble is by managing some symptoms and causing side effects that include some of the symptoms that other medicines are managing I grow weary trying to figure out if my illnesses are growing worse or better or even exist. So I try not to think about it (much). It boggles the mind.

The mind. Several of the medicines are at work there, too. Lowering anxiety and adjusting levels of obscure brain chemicals to prevent deep slides into darkness. I hope high school biology becomes more concerned with teaching such things rather than the anatomy of ugly green formaldehyde preserved earthworms. It would be far more practical; all of those kids saying to themselves: Is that why dad (or mom) gets so quiet and withdrawn or weirdly happy or arranges the dishes by size and shape and color?

The medicines manage me. Smooth out my moods. Protect my organs from the ravages of lupus and ease the pain in my joints.  I think at times that I should be more upset by things unfolding before me. The old me would have been. But I am not the old me now.

“Do you like the new me?” I asked my wife. [Trust me, never ever ask this question].

Back in the day it took something like watching Les Miserables being performed on stage (it was with that magical original London cast) to make me cry. Heck, it made everyone cry. Then when those brain chemicals got out of whack I could watch a show like Parenthood and cry through every episode.  Now I don’t know what it would take to make my cry and I am willing to forego using the scientific method to find out. So which “me” am I now?  Are the pills rolling me back to an earlier version of myself or moving me forward to the neurological version of IOS 8? Who am I, now? Today?

I just don’t know.

On Becoming Vampire

“I’m not telling you that you have to be a vampire….”

I will always remember the way my rheumatologist broke the news that I had an auto-immune disease. I figure by mentioning the word “rheumatologist I just lost half of you right there – because talking about visiting a rheumatologist falls somewhere in the “holding my interest scale” between watching grass grow and filming a cow making cow pies. Thing is, while the sun isn’t exactly killing me, it sure knows how to box and has a nasty right hook.

This was brought home to me the other day when I walked the five minutes it takes  door-to-door from the parsonage to the church office a couple of times during a typical day without my big somewhat ridiculous looking floppy hat which is impregnated with  SPF 30 sunblock  through some magical process beyond my simple mind’s comprehension. I also failed to decorate my face with similar sunblock  that despite my best efforts at rubbing it in leaves me looking like some Walking Dead reject. A couple of five minute walks. No big deal, right? By four o’clock I was in bed, head splitting, body aching and stomach roiling, a condition that lasted for hours.

My first thought was that the small part of me that has secretly believed that this whole lupus disease thing was all a big mistake needed to throw in the towel and accept that my life has changed. My second thought was that I needed to buy a couple more sunblock embedded shirts from LL Bean. While they do not make any that will fit a clergy collar as an accessory, this is no big deal as anything up against my throat causes problems these days and by problems I mean leaves me choking, gagging and gasping. I have become strictly an open-collar/v-neck kinda guy; an undercover pastor, plain clothes, but still faithfully on assignment.

I garden less these days and then briefly. I tell people that I am going for the native and natural look. The butterflies and bees and birds are just as happy, if not more so, though people perhaps somewhat less. Early in the day or late, I run out with pruning saw or clippers or shovel in hand, cursing the sun, but softly, owing to our long and deep relationship: the beaches, the long walks, the lovely spring and fall afternoons, and, of course, our many hours in the garden. My nature photography is now mostly limited to the early morning hours. You will always know me if you see me, the guy with the camera and the big floppy hat and the long sleeves and long pants, sweating profusely while you walk around in shorts and a t shirt drinking it all in, the warmth and the sun.

Last Sunday several people commented on my more healthy color. I have resolved to be honest in all of this so I smiled and said “thanks” then explained that for me pale is healthy and any color is a result of the disease kicking it up a notch across my cheeks, one of its calling cards, a facial rash of varying degrees. If I look healthy, I am sicker. If I look sick I am doing OK. Think of a vampire and you will understand.

While struggling to find the right meds and dosages in the accompanying struggle with depression through all of this, the daily tears and paralyzing worry have fled, promising that we may have found some answers there. The only tears over the past few months came as I lay there the other day, sick in bed, knowing that as small a thing as a hat and sunblock may seem to be, and as every dermatologist will tell you, how all of us should be leaving the house anyway, that the immediate consequences would be severe. I had arrived at the border of respecting the sun and fearing it, a place not on my bucket list of tourist destinations, nor I imagine, on yours.

More Majestic Than Mountains

DSC_1284In South Florida the only mountains that exist are the mounds of dirt and grass- covered garbage that we used to call “dumps” when I was a wee lad back on Long Island, but now they have much more exotic names like “sanitary landfills” that I am certain cause innumerable middle school boys to guffaw and blow milk through their nose. For me, mountains (and not dumps) are trips to holy places, sacred spaces, the very front porch of heaven or at least its public gardens.

DSC_1411I do wonder if people who live there, on them or near them, have grown accustomed to them, bored by the familiarity of their beauty,   no longer held captive by the awe they inspire in one’s own heart. There on the mountains, I scour the sand, dirt and mud for stones etched over time by some mysterious hand and painted in hues of grays, translucent whites and shades of rose. DSC_1016Cacti in the shape of crosses grow in soil not fit for other habitation  and they wait with patience for some unwary and eager sojourner like me to discover them with one’s own eyes and hopefully not by the application of one’s own backside. Small rocks loosen from the hillside with every step. I slide and fall gracefully and hysterically in alternating turns, thankfully alone and far from the eyes and smart phones of others.DSC_1020

There may be some healing to be found among the golden aspen and fragrant fir and pine; amidst the whisper of water gently cascading over rocks and hill and into valleys still green despite the coming chill that morning brings. The scent of wholeness dances on the breeze and I am always surprised each time the sun kisses my cheeks with its warmth. It is there, somewhere: the optimism of joy, a heartbeat of hope.

Even in such a place, the pushback of reality comes unrelenting: my knees protest every step of altitude walked and one day’s energy in stacking piles of dead trees and brush darken the subsequent day in  lethargy. And every mirror reflects a face masked in a lupus-infused shade of red.

DSC_1239But such times find their conquerer in the Infinite, the Creator of creation still unfolding, with every horizon bearing witness that our own limitations have been set aside; we a part of that which has declared the lesser boundaries of who we think we are null and void; declares our own eyes that see ourselves diminished and diminishing merely fooled by tricks of reflection and shadow.

I journey on towards a wholeness that I cannot create for myself, but in seeking may yet find, being found by something much much greater than myself, whose strength may yet cover our every weakness, and who bears burdens we, ourselves, have tried and failed to bear. And so we sing to the One from mountain and valley, from sea and forest, from our own sacred brokenness:

“Glorious are you, more majestic
than the everlasting mountains.”