“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.