I'm writing this as I'm waiting upon Charles to return from having the Mazda serviced, then to go to another appointment. This one, with Jill the NP, who monitors my immune system to--we hope--prevent its absolute demise. I don't envy her this job: slammed by weekly infusion and tested by continual waves of bacterial infections, I am a battleground.
I also do not envy her my mood today as I last thing I want to do is go to see a doctor or any stripe. I reach, occasionally, this plateau of "fed up" wherein the last thing I want to hear is more of what I should do--blah blah this, blah blah that, take this, crush that pill, put this evil tasting elixir down your tube. I feel like if any of these people had to walk in my shoes, breathe through my tube, eat through my tiny aperture, they'd simply shut up for a few months, knowing that I'm already living through a miasma of musts. They'd understand that one more instruction may be the tipping point where my temper takes over my normally positive outlook.
In real life, most doctors treat me well. They act as if I'm intelligent, I act as if I am, and I'm very honest with them. If they ask me to do something I won't do, I tell them. Then I allow them to sell me on the necessity of their instruction or modify it into acceptable range. They usually win. To doctors, as a group, there is a way through a thicket, not a network of paths, and your body will be forced down one at the expense of forging a new one because the appointment you have is scheduled for 15 minutes and they are already running 1.5 hours late.
If Eliot's Prufrock had measured out his life in coffee spoons, mine is even more precise, being measured in micro liters against the hash marks on a syringe. My food runs in 2 ounce segments through a plastic syringe into my tube's hopper, and onward. Drugs trickle this way, crushed and mixed with water, or poured in from other measuring devices if liquid already. Today they will test my blood; tomorrow at infusion they will test my blood. My blood is pretty thoroughly tested each week to see if I'm standing up to what they throw my way. So far, yes, thriving even.
My weight is expanding as summer deepens, a bit of a love handle has appeared around my waist, I can make my belly button talk if I squish my stomach fat. I have luxuriant naps in the hot afternoon, now joined by my new companion, Rally, the schoodle, a six year old poodle/schnauzer mix who is 16 pounds of pure muscle and utter disdain for any other dog. I admire him as he leaps off the porch and bounds across the backyard to hate the St. Bernards, two yards away. He is single minded as I am diffuse, a foil to whatever indecisions I experience with his very pointed actions. He's also pretty much a slut for love, a state I can only imagine.
I'd like to challenge the doctors who challenge me to construct so much that is normal using a body that is anything but--but that which is miraculous to me (love handle, squishy belly, mowing the yard), is to them simple evidence that what they do works, and that I'm best to continue compliance with their vision. I like to see the universe in more mystical terms, and experience it as a sum total of good v. evil on a daily tally. Three hour nap, nothing got done? half good, half bad. One hour nap, some mowing accomplished? way better, good takes it three to one.
The great issue, of course, is that there's no endpoint for us, and to their credit, virtually every doctor I've had has admitted that. We aren't working to a cure, a remission. We are working to establish what will become maintenance, the point of non-variance from a compromised norm, incorporating the less desireable traits of surviving (food and trach tubes, prime examples), with the metrics of relative robustness (healthy weight, well balanced internal chemistry).
In marriage, death is countenanced as the great parting of souls united--though more frequently, it's lack of money or skanks that do the work. Death too is the great parting I'll have with my doctors, who will, until that time, be affianced to my "problem." Like any of the dating pairs I've known, we'll have our problems; misunderstandings that escalate to stand-offs, the silent treatment, misapprehension of intention, a less than fulsome kiss hello or good bye. Today I see the doctor and I'm tired of our thing we've got--by the time it's over, I may well be back in love.
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