Category Archives: Guillain-Barré Syndrome

The Horror of the Shade

life after deathLast week I elected to republish a blog originally entitled A Sense of Foreboding, with a new title this time – Impending Doom. This choice of title was hardly accidental.   Ten days ago I had a biopsy; from that point until today, when I received the cheerful news that all is well — full catastrophe averted! — I have been in a fine old lather. As it turns out, I do not want to die. This came as something of a surprise to me. I thought I would be more philosophical about it. I was dead wrong.

I would describe myself as sunny, but not particularly optimistic. I would prefer to be happily surprised by an outcome than devastated by it. My immediate reaction to the biopsy was, therefore, to assume the worst. The absolute worst. After all, there was that chart on the mammography clinic wall pegging the rates of breast cancer in women in their sixties at one in twenty eight – odds I did not like. When I was thirty, a case of Guillain-Barre Syndrome left me paralyzed and on a ventilator. Ever since then I have viewed my internal workings with unease: what was going on in there that I didn’t know about? Because I know some damn thing was going on. Was this it? Had the other shoe fallen?

The next thing I did after assuming the worst was to go underground, pending, you know, the Apocalypse. I told my husband, of course, and a few of the more sympatico women with whom I work – largely to explain the fact that I kept walking into walls and had become, all of a sudden, unable to form complete sentences – but no one else. Not my kids. Not my sibs. Not friends, with the exception of one and then only very late in the game. I didn’t want to worry them.  I didn’t want them to tell me, you don’t know, it could just be Stage One, Cancer Lite. My ex-mother-in-law, a nurse, was fond of informing appalled dinner companions, “They opened her up and she was FULL of cancer.”   What if they opened me up and I was FULL of cancer? No, what I wanted to do … what I planned to do was to determine the full extent of my predicament, then conduct myself with sublime mindfulness, in the manner of Ekhart Tolle.

invictusWhat I, in fact, did do was to alternate between nanoseconds of zen-like acceptance of the things I cannot control and explosions of sheer terror, punctuated with flashes of anger –“Why me? Why not a smoker?” — and bargaining: “What if I never indulge in schadenfreude again?”  “How about I stop fantasizing about a lone gunman shooting up an NRA Convention?”

I am fond of saying  that I cannot imagine a time when I was not nor imagine a time when I will not be and that, therefore, as far as I am concerned, I am immortal. A nice theory, but it didn’t stand the test of contemplating what poet William Ernest Henley rather turgidly described in his poem Invictus as “The Horror of the Shade.”

As it turns out, I can imagine not being. I can imagine my husband’s terrible loneliness without me; we are joined at the hip, after all. I can imagine not being at my son’s upcoming wedding and what that would be like for him or for my youngest daughter when she marries. I can imagine not being there for my grandchildren . . .  and I dearly want to be there for my grandchildren.  And I can imagine not finishing this damned novel.

The reprieve is temporary. I know that.  The shoe will fall sometime.   Just, thank the Universe, not today.

Enjoying ill health

Me, Mom and Peter

Me, Mom and Peter

My mother took a dim view of people who, in her words, “enjoyed ill health,” which meant that, any time I sought to be absent from school due to illness, she would ask me two questions:

1) “Do you have a fever?”

2) “Are you projectile vomiting?”

If the answer to both these two questions was, “No,” then, as far as my mother was concerned, I was good to go. For some reason diarrhea did not make the cut of maladies deemed note-worthy, presumably because diarrhea, though loathsome, tends to take place in bathrooms, whereas vomiting is more likely to be spontaneous, resulting in messes mothers would be expected to clean up.  (When it came to vomit, Mom greatly preferred dogs to children, since dogs, given a sufficient interlude, are inclined to return to their vomit, with generally happy results.)

Aspermont StarThe No Fever/No Vomit/No Note rule did not apply to my brother Peter, whom my mother deemed ‘puny,’ by which she meant not ‘small’ so much as ‘sickly.’ You will not find this meaning of the word ‘puny’ in your dictionary; I checked. It appears to derive entirely from The Puny List, which appeared in the weekly newspaper of Aspermont, the widening in the road with a post office that was my grandfather Zant’s West Texas hometown. This column assiduously listed all those people in the newspaper’s catchment area who were “feeling puny,” i.e., suffering from maladies ranging from mysterious female trouble to shingles, whose put-upon families might benefit from the quiet conveyance of a covered dish or pie.  Because Peter was disposed to chronic respiratory infections, he was “puny.” As was established in my last blog post – Pretty Feet — I was “chunky,”and thereby better evolutionarily equipped to fend off germs.

I did not get sick often but, when I did, I made sure to pull out all the stops, for example, when I managed to extend a bout of the three day measles into two weeks by cunningly getting them not on the outside of my body, but on the lining of my stomach. My piece de resistance, however, my crowning triumph, was the contraction, at age 30, of Guillain-Barré Syndrome – a catastrophic disorder in which the body’s immune system attacks part of the peripheral nervous system, resulting, in extreme cases, in complete paralysis.  Mine was an extreme case:  at its nadir, I could blink and that was about it. I may not have had a fever and I certainly was not vomiting, but, boy, was I sick. I did recover, except for the occasional tick, twitch and tremor, but only after a lengthy stint in the ICU, followed by weeks on the Neurological Ward, followed by a month in Rehab where I had to learn to walk again.  It’s like I always say: go big or go home.

The only photo you'll ever see of me in short shorts.  Post GBS I weighed in at 99 pounds.  Me and daughter Sabrina enjoying one of the only guilt free ice cream treats of our lives.

The only photo you’ll ever see of me in short shorts. Post GBS I weighed in at 99 pounds.  Here my daughter Sabrina and I enjoy one of the only guilt free ice cream treats of our lives.

As I have with so much else that was my mother’s, I have internalized her suspicion that, when I claim to be sick, I am, in fact, malingering.  Unless I am running a fever or vomiting (or, post GBS, paralyzed), I find it exceedingly hard to tell whether I am actually sick or just trying to put one over on myself. This leads to me soldiering on in ways that are inimical to public health and probably, on occasion, detrimental to my own.  My yoga teachers are always exhorting me to listen to my body, but I find it very difficult to hear the poor old thing over the accusatory remonstrations of my super ego.  Because I know deep down, just as Mom always did, that I am a shirker by disposition, that I will go to great lengths to get out of practically everything, and that, when it comes right down to it, there’s every chance that I’m just faking it.

For  The Puny Column, a short story based on the Puny List,  click here.  It appeared in the journal Exile, 27, 1 in 2003.