."The Time It Really Hurt" 12-28-86 The time it really hurt. Wasn't love that left the scars; it was my own helplessness and the dreadful loss of the future. Had to do with my health. When I was 17 I underwent major open heart surgery; I remember telling you about it. The surgery was a success; and *what* a success. A mere five months later, I was hiking 70 miles along the Appalachian Trail; climbing stairs two or three at a time for 4-5 stories; feeling great. As healthy as I have ever felt in my life. It was as if the cripple had been made whole. Running was something I gloried in--though I did not do it to excess as my ingrained caution was still strong. For months after the surgery I was on a limited salt diet--god, cheese without sodium is *awful*--and when those restrictions relaxed, I was happy. I began to be able to walk long distances; to ride a bike again, to move to a room that was *not* on the first floor of my house. Marte, I do not know how to tell you what an experience of suddenly being normal was like. During the unbroken year and a half it lasted, not everything went right; I wasn't totally happy. But at the time it seemed like heaven and I never lost the wonder at being able to carry my own boxes, or run, literally, to the store. I took up hiking and kayaking, both of which other members of my family were already into. There was a freedom about that time that was physical in nature and produced the mental freedom. They say that slavery is a state of mind and I'm sure there is truth in that. But do not ever believe slavery is totally a product of the mind. I have been a slave to deformity. Helplessness and resignation can be caused by inadequate resources, physical as well as mental. The period ended one lovely summer day when I was on a hiking trip in upper New Jersey (I was living summers in NYC and going to school in Chicago). Our party had hiked miles from the road and camped at the bank of a pretty, forested lake. Others had gone off to exploring the other side of the lake, while I, deciding to laze, finished making camp and lay around it. They had been gone 15 minutes when I was hit by SVT, Super Ventricular Tachycardia, an extremely rapid heartbeat which, though it does circulate blood and is not a direct danger, is painful and wearing. My pulse rates have ranged between 120 and 250 per minute--the later end of the range only briefly, thank god. These tachycardias had struck frequently before the surgery, and for a short period of time afterwards. I knew them well from my former years. They generally lasted a few minutes to an hour or two, curbed my activity level, and left me tired. Not one had happened to me in the last 15 months. I wasn't afraid; This symptom had never been more than a nuisance and a warning. I let it happen, staying away from the fear and adrenaline which are the worst enemies at such a time. Two hours went by. The family members in my party returned and I did not at first tell them. What could they do? We were miles from anywhere, I had no medication (having been off it for a year), and the damn thing was *going* to pass anyway. Four hours. Late afternoon. I'm frightened, tired, beginning to feel nauseous--a bad sign. I've tried everything I can think of to get it to stop--and there are some entirely physical techniques, like turning your head right and massaging the carotid artery, or taking a shit (which uses the diaphragm muscle to put great pressure on the heart). Nothing has any effect and I'm feeling dizzy and weak. I'm at the longest time one of these has ever happened without my being in or going to the hospital. I tell my father (mom isn't along on the trip: not the hiking type), and he makes me lay down in the tent and gives it another half hour. I vomit, which is good; less in the stomach to distract the circulation, and also there is (in me at least) a link between control of the stomach and the heart rhythm. After vomiting, my heart slows to a normal rate, and all of us feel an intense relief. But somehow to me it doesn't feel like a normal heartbeat (and I have had a lifetime of experience at sensing the unusual in my own heartbeats)... it feels instead like tachycardia, but slow. Regular enough, but unstable. Five or ten minutes later, the rapid pulse is back, even worse. I am going into shock. My father sends three of our group around the lake to a boy's camp on the other side which they found while exploring. I am feeling sick, again, awful and terrified, but all in a detached way. When you go through enough bad times, and there is nothing that can be done, you develop the ability to distance yourself from what you care about. I am lying, waiting for it all to end. I don't fear death; short of the surgeries I don't think I'd ever at that time been really in danger of dying from my heart. I just wanted it done, the nightmare to end (as I knew it would--though knowing does not preclude the doubt). The Director of Camp Lanohwah sent a row-boat across the lake, and had the ambulance meet us when we got over. I don't remember a whole lot of the rest; just lying in the bottom of the metal boat, wanting to vomit again and hoping if I did it would help. I did and it didn't; the pause in the rhythm this time was under five seconds. I spent the next two nights in a hospital. They had to cardiovert me twice. Fifteen hours before my heart rate and feel returned to normal. There had to be a reason, right? There wasn't. Blood tests, EKG's up and down, X-rays, showed that it was as normal as could be; nothing seemed responsible for the attack. A fluke. But from now on, we advise you never to be more than 45 minutes from competent medical help; preferably a hospital with a good Cardiology department. And here's a copy of your normal EKG's to carry in your wallet. "They" will want to have it to refer to if you should get into "trouble". ------------------ I have tried, Marte, to give you some sense of what it was like unfolding to me. But I don't know if you will see how deep and awful a blow it was. I could take it if I had suffered a minor heart attack. I could understand a potassium imbalance. I would have been distressed by a diagnosis of rejection of the surgical work, or blockage, or a hundred other potentially possible explanations. And with the tests that could be performed in two days, not everything could be ruled out. But what the results boiled down to, was FLUKE. No swelling, no infection, no damage, no possible prognosis, good bad or intermediate. No cause equals no countermeasures. I was put on major medication levels, comparable to immediately post-surgery with no idea whether they were necessary, beneficial, or permanent. My lovely golden castle had collapsed. Now it was some uncertain disaster that loomed; the medication stifled my activity levels by controlling how much the heart could respond to demands (such as climbing stairs or walking a block). When I went back to college in the fall, it was with a dreadful, heavy spirit to match the heavy, unresponsive body I had been stuck with again. Something gone wrong. No one knew what. It wasn't fair--and worst of all it had no accountability to anyone--not me, not the doctors, not God. I was scheduled for a catheterization over the Christmas/New Years holidays. Catheterizations are minor surgery where they cut a vein open, usually in your elbow or groin, and insert a tube with light-pipe, pressure gauges, or other test equipment back up to the heart. I was glad for this, though they are unpleasant (one remains fully conscious, yuck). Anything would be better than not knowing. During my semester at college, I had a great many arrhythmias of various types, took doses of heart medication that disgusted me, limped from class to class where once I had flown, and moved to the first floor of my dorm from the lovely third-floor room that as a Sophomore I rated--but could not hold for four weeks. I was hospitalized twice for severe tachycardia. And one time, when instead of trying to cardiovert me, they attempted to use an special drug, my heart stopped cold. I remember hearing the alarm go off above my head. I remember struggling to sit up, and a nurse rushing in, looking at the monitor over my head, staring at me with fear on her face, and pressing me roughly back into the pillow... "Lie still!" What is it? I asked, feeling very strange. The world was going away, sliding up and off into a purple haze; sounds were also receding into a purple haze. Very much the way it does when ether puts you under--or whatever they use now instead. "Be quiet! Your heart's stopped!" Everyone was scurrying around now, demanding "the Cart", or "four cc's of with a Cardiac needle", and so on. A doctor was thumping my chest hard, looking at the screen above me, doing it again. Yelling, "Well *find* the goddamned needle!" I recall thinking to myself, great. I'm here for tachycardia, they've put me on enough drugs to stop my heart, and *now* they're going to inject the most powerful stimulant they can directly into it. I wonder if I'll survive." It seemed likely I'd either be torn apart on the high end, or drop cataclysmically off the low end of the heartbeat. I'm not sure whether I was conscious during all this. I seemed to be, but I can't imagine they got themselves together in less than 15 seconds--probably three times that actually--and I doubt the brain can stay conscious that long without oxygen. Perhaps my heart had not stopped totally; the nurse might have been giving me the easy, fast story instead of the longer, true one. Perhaps it had only gone into a weak flutter mode; or fibrillation--beats and spasms too fast to circulate blood. I don't think the later; one would *not* give stimulants in such a case. And the former doesn't make much more sense; you wouldn't beat on the chest if there was any heartbeat left. Perhaps I had a "near death experience". I felt conscious. I remember starting to black out as the nurse answered; and yet I also know what was going on around me for tens of seconds after. I don't think I lost subjective consciousness at all. Fortunately the nurse couldn't find the needle in time to inject me before my heart re-started on its own... or maybe as a result of the pounding or the electrical zaps--there were at least two or three of those. But that damn needle with lay on my bed table the whole rest of my stay, scaring the shit out of me, waiting for any excuse to use it. .