It's so subjective

Cold doesn’t register properly.  I don’t feel it in the way that I used to.  Inching my slow walk from the car to the restaurant in the 40 degree evening, I don’t feel the chill.  But after a few steps I can tell that my leg muscles are tensing up.  My legs are cold, I know, but I don’t feel as if I’m cold.  At least not the way I did before the short circuit.  Still, if I don’t get into the warmth quickly, I fear the muscles’ll tense up completely and I won’t be able to move at all.  I try to hurry, but that just tightens the muscles more.  “Take your time,” people kindly tell the old guy tottering along behind his walker or leaning on his cane.  I thank them without trying to explain that it’s taking all the time I’ve got.

These new pains affect me like the cold does.  Marsh think that I’ve developed tendinitis in my gluteus medias – she’s sending me to McKeag, her sports medicine colleague, to see if he can confirm it.  It manifests as a two-inch circle of burning pain in the middle of my left butt cheek and a slightly smaller, but angrier disc of pain a few inches down the side of my leg.  They’re harsh and annoying, but I think I should be able to ignore them.  My leg muscles disagree, they tighten up, but refuse to accept the pressure that would let me stand.  But it’s not as if I’m thinking, oh, that hurts, don’t do that – the muscles are rebelling on their own.  What I’m thinking is, I know this leg is strong enough to hold me up.  Why won’t it cooperate?  I know it hurts, but... Damn.

For many years the pain was not a limiting factor.  I relied on the Lawrence of Arabia theory of pain management.  As a college student, Lawrence would dazzle and horrify his friends by holding his hand over a match flame.  Asked, “But what’s the trick?” he replied, “The trick is not minding.”

I’ve been good at that.  The pain resulting from my spinal cord damage is constant, but steady.  A white noise kind of pain.  I’d usually give it a 5 or 6 on the 10 point scale (“where 0 is no pain and 10 is the worst you can imagine”) when whatever healthcare person I was seeing asked if I was in any pain today.  If they asked where the pain was, and I was feeling puckish, I might say, accurately, “from the neck down.”  Depending on my mood, I might provide more detail, starting at my shoulders and describing the different pain sensations there and across my back, around my torso, down the arms and to the hands, down my legs, to my feet and toes.  Throbbing, burning, sharp, dull, cutting, tingling, vibrating, itching.  Something for everybody.  That was probably unkind of me, since the questioner was often just a triage nurse trying to do the pre-visit rundown, but I’d feel the need to let them know that their list of checkboxes was going to be inadequate to my situation.

I was always aware of the pain, but could usually push it to background.  What limited me was the fierce spasticity, the muscle weakness, and the extreme fatigue.  Not being able to walk without the cane or the rollator.  The sheer effort involved in taking each step, while my spastic muscles strained against each other.  Not being able to button a shirt, struggling to tie shoes, fighting to form a guitar chord.  Getting up every morning already weary, pushing myself through the day and feeling the muscles giving out long before dark. These were the barriers, the hurdles that I had to keep trying to surmount in order to accomplish my days.  The steadily thrumming pain I could manage to just about ignore enough.

Now, with the tendinitis on the left and the sciatica on the right “not minding” has stopped working so well.  I think I could still get past it if I could get my muscles to agree.  But because of the way my sensations are scrambled it’s been hard for me to understand just what’s going on where, and why the pain is making it so much more difficult to walk and to stand.  Why I can’t I just will my way through it? 

The first time I saw Bashir, the TM specialist, after I’d been released from the hospital and transferred to his care, he told me to imagine my spinal cord as a cable made up of many wires that extended throughout my body, sending the signals up to my brain.  The demyelination that the term “Transverse Myelitis” describes is equivalent to stripping the insulation off those wires, so that when a signal tries to get through, it jumps from one wire to another and gets disarranged.  Lynn calls it a short circuit.  I’ve referred to it as a signal processing error.  

The wildest example, and one which I probably wouldn’t believe if I hadn’t experienced it, happened with a bug bite on the top of my right foot a couple of years ago.  I knew the bite was there.  I could see the redness and the slight swelling in the center.  I’m one of those people bugs love and in the years before we screened in the Treehouse, I’d often come in from an evening out on the deck with multiple bites on my legs and feet and ankles that I wouldn’t be aware of until the itching and the redness showed up a day or two later.  I don’t spend much time outside anymore so bug bites are rare, but this bug got me and the visual was quite familiar.  So was the itch.  Except that the itch was on the top of the left foot.  Identical spot, wrong foot.  No sensation around the bite itself.  Bite and itch faded together over the next two days.  Imagine the signal messenger struggling through the tangle of neurons at my neck.  Finally arrives at brain level, breathless, barely conscious, whispers before expiring, “Bug bite... top of foot...”  Brain says, “What, where?  Which foot?”  Makes guess. Guesses wrong.

Phantom limbs.  The guy who’s toes itch like crazy even though his leg was amputated at the knee.  My CGI legs flicker in and out of existence.  When Lynn wonders if it’s numbness that’s bothering me I say, oh no, I have plenty of sensations.  I just can’t tell how they match up to what’s happening in the real world.

What I like about my new pains is how mundane they are, how very common.  Nearly half of adults will experience some sciatica pain during their lifetimes.  Millions of people suffer some bouts of gluteal tendinosis.  They may be difficult to treat, but at least there are hundreds of thousands of people in healthcare working on it.  Transverse myelitis?  Best estimate is 1400 new cases a year, a third of whom suffer few long term effects.  Altogether there may be 30,000 or so of us strugglers scattered around the country.  A handful of doctors specializing.  There’s a few drugs that help some people with the nerve pain, but it’s trial and error, lots of side effects, including cognitive impairment which I’m not willing to risk.  I’ll stick with Lawrence for the TM generated pain.

But these new, mundane pains, these more treatable pains, maybe we’ll be able to do something about them, even though my scrambled senses don’t respond to them in normal, mundane ways.  I’m hopeful, if not optimistic.

In philosophy school I was fascinated by the mind/body problem.  Where does the “me” reside?  Is there a soul separate from the body that would retain a sense of personal identity after my death?  I’ve never believed it.  I believe in soul, in spirit, in some animating life force that is more than body, but it’s inseparable from the body, at least as far as encompassing “me” goes.  How could I be “me” without the body, without aging, without these scars, the skin sloughing off and new skin cells growing? Without hunger and desire, physical pleasure and the fantastic mysteries and miseries of dreams?  More than corporeal I am, yes, but my sense of self is so entwined with my body that I can't conceive of a disembodied me.  If the animating force continues when the body succumbs, it wouldn’t be “me”.

Since the short circuit, though, my consciousness is at odds with my body in ways that it never was before.  I construct stories to try to describe what’s going on in my body that might explain my sensations.  In normal times, the body requires so little conscious intervention.  It just needs a smooth track from the brain to the rest of the nervous system.  Then it hums along nicely, adjusting temperature, pumping hormones, digesting, breathing, mindlessly managing the gazillion little muscular interactions that take place when you run downstairs (what an amazing feat that is!).  Then a burst of pain erupts – you touch the hot stove, the kitchen knife slips, the ankle twists.  The brain grabs consciousness – “You there!  Quick, pay attention!  Don’t do that thing that is causing pain.”  Suddenly the body has all your attention and you act accordingly. 

It doesn’t work that way for me anymore.  My brain can’t tell what’s going on.  I can’t use it to make the appropriate conscious decisions.  The body has to go it alone.  Muscles orphaned and doing the best they can.  And I’m left wondering how much of me is me.

Comments

[Marty Frank]

Scott,
I just came across this post on Facebook. It has been awhile since we last connected. I knew that you had been slowed due to spinal cord issues but was shocked to see how your condition has evolved. I wanted to let you know that I am thinking of you and Lynn, wishing you all the best. I miss our interactions at SSP and UAB and the good old days at the start of OA.

All the best,

Marty

[Mark Seeley]

Scott,

I've experienced some of what you're talking about through my wife (Elise) and her experiences with tinnitus and asthma/allergy issues that deprive her, sometimes for many months, of smell and taste. A constant ringing in the ear often disturbs her sleep, and living for periods without smell and taste makes things like eating a snack almost completely meaningless. Our bodies do seem to rebel or be out of control, or out of the "me" space sometimes. And these experiences don't compare to the kinds of pain and odd sensations (different parts of the body reacting to things than they should) that you catalog. Somehow though, you are still clearly "you" in this post and in your discourse!

Mark