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“Here’s The Thing”

November 19, 2011

Saturday morning in our home usually means that “Car Talk” is playing on our radios. This morning, I heard a WNYC radio promo for Alec Baldwin’s new podcast  (podcast only, it seems). It’s called “Here’s The Thing.” It’s essentially Baldwin interviewing actors, comedians, makers of public policy, and critics, much like James Lipton’s “Inside the Actors’ Studio” interviews on Bravo, but better, or so MovieLine says. . I’ve seen Baldwin hosting The Essentials with Robert Osborne n Turner Classic Movies; he’s extremely well-informed and personable in informed discussions. So the podcast promo actually caught my attention.

But here’s the thing: Baldwin said that he would be talking with his guests about “the things that make you get out of bed in the morning, and the things that keep you awake till 2 in the morning.”

My heart sank as I thought about that topic, as heart-sinking is a natural side-effect of the morbid despair caused by yesterday’s bout of 220+ blood pressures for most of the day, . (Much better today, BTW – 150-160 range, even though that’s far too high for a stroke survivor) I have no work that inspires me so much that it is the first thing that I think about when I awake, or that keeps me up far too late. I always dreamed that I would find something, because of all the advantages I had been given through birth, situation, and close calls with mortality. I always believed that something would appear, a *poof!* moment of recognition of vocation. The idea of a vocation is very big in Catholic doctrine. I was schooled by nuns; they all had “vocations,” a calling from God to the habit or nunnery or cloister. I was very affected by that concept as a child; a vocation seemed to be such a wondrous thing! God spoke to you. He chose you to do something wonderful for Him! Best of all, you knew what that task was. You knew why you had been born, and what to put your energies into. You knew your purpose. (And, no, I don’t mean the “special purpose” that Navan joyously discovered in “The Jerk.”)

I kept waiting for that purpose I was sure I’d find. I’ve had a lot of enthusiasms, and sometimes wondered if one of them was my “purpose.” Nope – as enthusiastic as I may have been, something always intervened to divert me. I had employments that I entered because it seemed sensible at the time, or was the only opportunity at hand. I even had a career in academia that I loved, and would have happily continued for the rest of my life, if the economics of the field had permitted me to have both my family and employment. I had a professionally very successful MLA Convention in 1993, and left certain that I would have to choose between a tenured academic position, or my family (Jake was two at the time.) That’s what what I was both told by other academics,  and saw plainly in the experience of my friends. I came back to New Brunswick and had what can only be described as an emotional breakdown. That, to this day, remains my ultimate failure.

This is the background to my moans about failing at everything that I uttered here yesterday. Usually, I keep it to myself, or only tell Jan, because my talking about my failures both shames me, and make me fear that I am being a sympathy-hound. That sense of failure had been exacerbated in the past few months by the lunch with my undergraduate advisor, Dick, on my birthday. It’s been 25 years since we saw each other. I had him as a professor the very first year he taught in the History Department at Rutgers. He ended up being my Faculty Adviser on the independent studies that I did for three semesters, with which I qualified for my Honors degree. He was an excellent teacher, very enthusiastic about his field – American History during the Gilded Age and the Progressive Period – a period which also fascinated me. He encouraged my academic explorations, and I thrived in the atmosphere. After I graduated, he separated from his wife and called me. We even went on a date, although the concept of actually having my Faculty Adviser be romantically interested in me was so far-fetched that I didn’t even realize at the time that’s that was what it was.

The lunch was lovely. Dick is now President of Rutgers, and is about to retire into the Emeritus position. At lunch, he wanted to take a vacation from University chatter. So we talked national politics, recent history, the parallels between the Gilded Age and the present, and culture. But mainly he asked me about what I’d done since graduation. As I related my life, I told him how I’d not ventured far from New Brunswick because I needed to be close to my brothers and sister. They needed help in getting out of a ever-worsening situation at home, one that I’d escaped only with extreme difficulty. That period of my life took up ten years, until Jamie went to college. Even getting Jamie to the college he wanted was a close shave, as my father wanted him to turn down the NYU scholarship he’d been offered, in order to stay at home. After that lunch, I looked back at my life, and realized I’d never stuck to any job for longer than 5 years. My resume is a hopscotch pattern from field to field, each one appearing promising, or being intriguing, until I’d mastered it. Even the thing I’d loved most, my Ph.D. studies in English, I’d left without completing. I’d attended without completing. Why? Because I’d attended an MLA Convention in 1993, where I was very successful – presenting papers, running a panel, and even giving a Welcome Address to all the graduate students. But I’d also seen the choice of Solomon in my future, an unacceptable splitting of the baby: academia or family. I saw many of my graduate school friends who had gotten tenure-track jobs, they were all were getting divorced. I was even informed by well-connected female professors that career or family was the choice I had to make. My son was only two! I loved my work! I promptly came back to New Brunswick and had an emotional breakdown. That was my ultimate failure.

The story of my life, as I reviewed it, seemed to be that I’d abandoned my career options and betrayed my talents, because I cared more for my family members than my own destiny. Certainly, after that birthday lunch, that deep sense of personal failure overwhelmed me. Was it for this that my grandmother had stayed awake sleepless for so many nights, keeping my infant body alive after the traech? Would it have been better for my parents’ marriage if I had simply died then, instead of fighting for life so hard? (My mother had always told me that first year of mine was when the strains in their marriage first appeared.) What had I to show as recompense for all the money, work, and suffering that had gone into getting me to this point? Why hadn’t I found something to work at – even if it wasn’t gratifying – and stuck to it?  I had become the woman that I’d sworn never to become, back in the 1970s when I read Germaine Greer: the woman who passed into history nameless and forgotten, her only purpose seemingly to be to produce more humans. I have done enough genealogy to feel both intense curiosity and pity for all the women whose names are may be the only thing known about them now, who are sandwiched in between fathers and sons, who lose their last names if they marry, and who hang in the genealogy charts like a rejected apple on the tree, unpicked and unappreciated, if they didn’t. I had married, and kept my name because I wanted to be myself first. But the values I was raised with, or the personal psychological twists I developed, were the reason I protected and cared for family first. I had always felt that there was a purpose, as yet unknown, for my life.

What if I simply waited too long, banking on the future, only to have the future arrive, when I am too infirm to do anything? Now I am 55, ill, unable to get the care that might help me, and in constant pain. My health, the very body I inhabit, is the single greatest obstacle to my ever achieving anything. There is nothing that any human can do to change that, either. Does this sound like self-pity? Depression? As this article in Practical Pain Management explains, self-pity and depression are the natural, and even unavoidable. neurochemical by-products of chronic pain. What you hear speaking is pain, constant, unremitting, incurable pain.

Pain. Pain. Always pain. Here’s the thing: I do have something that gets me out of bed in the morning, and keeps me awake until 2 AM. It’s pain. CPS pain physically wakes me up, as it gets worse and worse the longer I sleep. Once you get past the 5 to 6 hour mark from your last dose, whether you are awake or asleep, the gabapentin has worn off. Your brain begins to respond to the neurotransmitter flood that  the Gabapentin has blocked, the flood that makes you feel like you are burning, freezing, and being electrocuted all at once. Then CPS knocks on your door as you sleep, trying to rouse you. First there are the courteous taps, then louder knocking. Finally, it begins forgoes using the doorknocker, and begins to bang with its fists, or with a log, and shouts at you, “Wake up! Come out of the house of sleep and deal with me! I demand attention!” It’s more persistent than our cat Portia when she wants to be fed; at least Portia will sigh and turn away, trying to distract herself from her hunger as long as she can. Not so with the Master, CPS! He only gets more clamorous, obstreperous and rude until you wake up. He even blows noxious gas under the door, into your house of sleep, which poisons the environment. Your sanctum is filled with evil dreams, as the physical sensations your body is experiencing are permuted into terrifying visions of torture, violence, and death. Finally, you are awoken, and hurriedly gulp down your pills. If you’ve slept too long, not answering the door for 7 hours or more, you will have a horrible 30 or 45 minutes, after you taken your meds but before they kick in, waiting for the pain to subside as the pills kick in. So while you will be awake, that hour is fairly useless. I remember happier days when I would literally bound out of bed, and throw back the curtains to see the sun stream in, and gaze out upon the world as if it was a Christmas present, a big box wrapped in beautiful paper and ribbons – a gorgeous mystery just for me, with who-knows-what delights inside. Now I look at a sunny, warm day (like today) and can only wish that I had the power to accomplish all there is to do even in my own small plot of land.

The pain keeps me awake til 2 am, as well. When that CPS pain gets buzzing very strongly at the end of a long day, the normal prescription strength doesn’t cut it. That’s when CPS becomes a badgering nag, a bedeviling pest, a harassment. It’s like a squirrel in the ceiling (such as the one we have above the den.) It scritches and scratches and gnaws and generally will not leave you alone. If I’m not dead tired, walking like a zombie, the needling persecution  will keep keep awake(but not good for anything)  for hours more. I take tizandine at night, because it used to make me pass out – no more, alas! although I don’t miss the jelly-kneed collapses I suffered a few times. I drink a shot of gin, and think of the fate of Zillah, one of Gorey’s Gashleycrumb Tinies.

Z is for Zillah, who drank too much gin.

Medical marijuana would get that squirrel to quiet down, or at least chill me out to the point where the scratching and gnawing sounds no longer pestered me. But, thanks to our Governor, the Great Republican Hope Chris Christie, MMJ, though legal, is impossible to obtain in this state. So I sit playing endless games of computer Sudoku until I fall asleep sitting in my chair. That’s the time to wearily drag my animated corpse up the stairs, clutching the railing tightly in case I begin to take a tumble.Why don’t I fo to bed sooner than that precarious time?The answer is simple: lying in bed staring at the darkened ceiling, awake, exhausted, and in pain for hours, is a longer, and dreaded, torment.

Here’s the thing: What gets me up in the morning, and keeps me awake until 2 AM, is Central Pain Syndrome. It’s not just me who experiences this, either. It is every single one of us who have been laden with this burden. It is an affliction of lifelong, excruciating torment – and it is always the result of having borne some other excruciating torment. Whether it was a sudden unexpected blow – a stroke, an IED explosion, a car accident  – or some long-endured, daily malady – epilepsy, multiple sclerosis, a spinal syrinx – we all have suffered bodily violence that the “normal” human world both pities and fears for its undeserved and unpredictable awfulness.

But after that awful event, we have been left with something worse than a scar. We have been left with CPS, the unimaginable pain that never kills you (though you may kill yourself), and never gives you one moment’s respite.

Is this my vocation? Is this what God had planned for me? Is this what God had been calling to me to become? Were all the other awful situations of pain that I lived through in my life – the croup suffocation and the emergency tracheotomy at 8 weeks old, the croup hospitalization and measles at five, the raw, ripped throat whenever I ran as a child, the spinal fusion and nine months of a body cast, the ankle injuries, the 27 hours of non-progressing labor, the auto-immune joint disease – not to mention the emotional pain and fear all my life, starting from the earliest moments of fear when my parents’ violent arguments woke me in the night – was this all God calling me?

Was pain the purpose for which I was born?

When I was a child and a young woman, ,I kept myself strong with this mantra: “This pain will pass. It cannot last. All pain passes. It does not last. Once it is gone, you will never feel it again.” I remember the agony after the spinal fusion, when the Demerol was giving me hallucinations, and my ripped-open spinal column was sending waves of visceral spikes through my entire body, and my gouged-out hip bone wouldn’t even let me move to adjust my position. I lay in that bed, the oldest “child” in the Children’s Orthopedic Ward at Columbia Presbyterian, and the nurses told me that I had to be strong, that I shouldn’t shout or scream or burst out in fits of tears. The other children were watching me, the big girl, and following my lead. If they saw that I was able to endure it, then they too would imagine that they could endure it. I lived up to that injunction, but it took the skills of a yogi. I could only stand the pain by passing through it mentally, getting to the other side where I could look at it as an object, a thing, something that I possessed like a book or a radio or a flower. It didn’t have me; I had it. I could pay attention to it, or ignore it.

Most of all, I knew the pain, however intense, was only temporary. That was my great salvation: the realization that every second that I felt it was one less second that I would ever feel it again. I lay in the bed counting off the minutes: “That hurts so much – and now I will never feel that again. This minute of pain is over; it will never happen again. As I pass  through this day of pain, I am one day closer to never feeling this pain again.” All day long, the metal exercise: “That minute is behind you. You are one minute closer to feeling no pain at all.”

When I was younger, the pain was all temporary, passing, finite, discrete, caused by a situation that would change. Knowing that it was evanescent saved me. I had hope. I had the belief that there would be a better day, a pain-free day. This approach was the way I got through so many of life’s miseries. My father would be throwing things, chasing us, knocking us onto the floor, then taking his Nembutal with scotch and falling down onto the floor red-faced and empty eyes wide open passed out. I would say to myself, “Stay strong. You can handle this. You have lived through worse. You can deal. In ten years’ time, you will be out of here and this will all be in the past.”

No wonder listening to George Harrison singing “All Things Must Pass” brought the tears of remembrance back to my eyes. It was my anthem in High School and college, and brought back the visceral body-memories of those days. But listening to that song this month, with full, wet tears pouring down my face,I was weeping  for today, tomorrow, and presumably all the days I’ve yet to live. When a person with CPS says to him- or herself,  “As I pass  through this day of pain, I am one day closer to never feeling this pain again,” they are referring to their own death. This is because CPS is never past.

CPS is always here, always now. We distract ourselves with computer games that demand we pay attention NOW to the cards or the numbers or the falling blocks or the tiles. We knock ourselves out with opiates or alcohol or, I guess, with cannabis. But as soon as we lift up our eyes and actually feel ourselves, the all too well-known burning/tingling/cold starts again. Even with the highest doses of gabapentin or Lyrica – high enough to put a Samson to sleep – that burn is there. Like with our drug combinations, or “cocktails,” as we call them – it’s always a matter of hitting the right balance. We balance between unbearable pain and bearable pain, between insistent pain and ignorable pain, between being awake and being comatose. Finally there is always the realization that this is the pain of our mortality. This is now what it means for us to be alive. So we have to balance between the urge to live and the urge to die. For some of us, like Frank, the urge to shuffle off this too, too mortal coil becomes stronger than the urge to keep our spirit in a forever flawed and pain-wracked body.

Today I have the urge to live, having survived through another day when I could see Death coming up the pathway to my door, even as CPS was already knocking. I am glad to be alive; I can even imagine that I have a vocation: to work to find a cure for this monstrous condition. In twenty years – hopefully, less, Central Pain Syndrome will be as recognized as Parkinson’s, or Multiple Sclerosis, or Muscular Dystrophy, or ALS, or Autism. Doctors will know what their patients have when they come to them, searching for release from this freezing electrical fire, and they will have actual remedies, if not a cure. There will be an organization to represent the sufferers of CPS in the Congresses and philanthropic foundations of the world. There may even be a “celebrity spokesperson,” a familiar face on the envelopes that arrive through the mail requesting donations. Most importantly, there will be research institutions and hospitals that are actively working on a cure.

If I work hard enough, I, and all my Alliance fellow members, both those who have joined and those who do not yet know about us, may one day have pain-free days again. We will rejoin humanity. This is my vocation, apparently. I now longer envy those saints that I did as a child; vocations are not easy, but very, very hard. But shouldn’t I have known that from my childhood instruction?

“He went away again the second time, and prayed, saying, O my Father, if this cup may not pass away from me, except I drink it, thy will be done.” (Matthew 26:42)

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2 Comments leave one →
  1. Eileen permalink
    November 19, 2011 10:00 PM

    Louise I had no idea what you were going through in high school. I am sure we all had issues we felt we could not disclose even to our closest and dearest friends.
    Sr Ambrose comes through on your writing…which is articulate, well-organized and from the heart.
    We really should have lunch one day!
    Eileen

  2. November 20, 2011 12:04 AM

    Eileen, I would love to have lunch. Unfortunately, you will have to drive to me…since I still can’t drive. But we can at least talk on the phone!

    If you never had any idea of what was going on,. then I was successful at the one thing all teens want to do: pass for normal. Your family’s openness to me was so comforting, *because* you were so large and happy. Your parents’ kindness to me has never been forgotten.

    As I’ve gotten older, I have found that the desire to “pass for normal” has changed to the hope to “pass for successful.” Since none of us have any idea as to how long we have, or what our legacy will be, I’ve opted to drop all pretense and just admit all my flawed humanity.

    Thank you for the comparison to St Ambrose. Perhaps someday I can live up to it.

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