I meet E.J. almost 5-6 years ago on another care related site and we have bonded through various site related blogs, chat rooms, week or monthly competitions, etc. I believe what I noticed about E.J. was her passion for photography and art as well as her outspoken attitude and not just her caregiving and passion. E.J. has approved for me to post her entire 18 year ordeal with chronic pain. Due to the time involved in this interview (personal story) I will be posting it over several days. This also provides time for those working on their questionnaires or story to get them in to me. This is not a way to get you to rush, I want you all to be comfortable with the stories before their posted.
Following is E.J. story in her words and her writing, nothing has been left out. Now here is the look into E.J’s Chronic Pain.
My National Pain Awareness Month Interview with E.J, Part 4
9/22/87 7:15 PM. Given a choice of what I’d want done again — all 4 wisdom teeth extracted or the Vabra aspiration — I’ll take the wisdom teeth. The Vabra is a thoroughly awful procedure, but worth its potential in miracles. The results take 2 weeks, but Dr. B gave me an Rx for Norinyl — a moderate-strength Pill. If, by small chance, the Vabra uncovers any nasties, the # of days I’d have taken the Pill would have had no effect, and this way I can catch the next cycle.
The pharmacist asked me, “Do you want all three months on the prescription? Or just one?”
“Three,” I said.
My coworker Jim: “They’re going to hurt you?”
Jim buried his face in his hands. “I could never be a woman. Don’t tell me — what are they going to do?”
“They’re going to extract some gunk. Then they’re going to look at the gunk to see if I can go on the Pill.”
He moaned, “I can’t stand pain. I’m like a child. I guess you get used to it.”
“You don’t get used to it. But this may take away a lot of future pain, so it’s worth it.”
I was plenty nervous when I arrived at the clinic. Went to the back desk and asked if there were any readings on the procedure. The nurses couldn’t find one. One — a woman in her 60s, who seemed a seasoned veteran, pointed to a contraption on the floor made of tubing, a large motor, and a glass jug. The jug, attached to the tubes, seemed to have a half-gallon capacity.
“We use this,” she said, “but we attach the tube to a sterile, very small tube and that gets inserted into the uterus.”
I recognized the contraption. I’d seen it on a PBS special on abortions. The “Empty jar after each use” was reserved for aborted fetuses.
Only in the medical world, I thought: I have myself sterilized, so I can go through an ersatz abortion that will let me know if I’m able to go on the Pill.
“Could you tell me anything about the procedure?” I asked. “All I know is it takes about 30 seconds and it’s painful.”
“To tell you the truth,” the nurse said, serious, “some women don’t feel any pain. Others clench their teeth and grimace.” She screwed up her face by way of example. “You can get some spotting afterwards.”
I thanked her and continued to wait, meditating. Then the same nurse — the one who would assist Dr. B — called me in. Orange quilted mittens had been placed over the stirrups and I broke out into a grin.
“Nervous?” she asked.
“Yes. I guess it’s natural.”
I asked to be told what went on during the procedure. When I had my laparoscopy I’d been verbally walked through every step of the way.
Dr. B had told me to take any necessary pain medication before I arrived. When he asked if I had, I said, “All day.” Two Naprosyn at 7:30, two at 11:30, two at 3.
My answer seemed to surprise him, and he looked at me. I looked levelly back at him. After a couple seconds of this, he said, “I’m going to give you a local anaesthesia at the cervix.” A significant gesture, and one that earned my respect; the nurse had told me a local isn’t generally used. She’d also said that, after the procedure, there may be pain for a few minutes and a bit of spotting.
She needed to leave the examination room in order to get the syringe. Dr. B gave me three shots of the cervical block, then clamped the cervix and said, “I’m going to turn on the machine. It will sound like a vacuum cleaner.”
“I’m going to begin the suction,” he said.
On a scale of 1 to 10, where 10 is a severe cramp under my regular menstrual conditions, I usually begin at 1 or 2 and quickly ascend. Here I came in at an 8. My moans were just short of howls, and unending. I knotted my fingers. On the ceiling above me there was taped a full-color picture from a Rocky Mountains ’86 calendar — but I closed my eyes instead against the pain. And the pain was agony.
“Just a few more seconds,” Dr. B said. Earlier he’d asked me to tell him to stop if I felt “too much pain.”
I’d answered, “If I feel about to go into convulsions I’ll tell you to stop.” I wasn’t there, but I was close. My body began to tremor.
“Just a few more seconds… Just 30 more seconds — ” Dr. B stopped himself, corrected: “A few more seconds….”
As soon as the nurse was free, she came and took my hand. I squeezed hers, hard. If, in her seasoned years, the most the nurse had ever seen was a grimace and clenched teeth, I added another dimension to her experience. Even Dr. B sounded nervous.
Finally he was finished. He removed the equipment, came around, and held my other hand. “How do you feel?”
“Still spasming.” That would be my answer for the next half hour.
He apologized, said, “I hope I haven’t hurt you too much.”
“Next to my menstrual cramps, this is nothing,” I said. “It’s important that you got all you needed.”
He got his pad. “The results won’t be in for two weeks. But I can give you a prescription now, so you can begin the next cycle.” Even if something showed on the Vabra, I wouldn’t have taken enough pills to do damage.
I felt a trickle. “I’m leaking,” I said.
The nurse got a towel. They gave me a pad. What I experienced was a far cry from spotting; it was closer to hemorrhaging.
Every few minutes Dr. B or the nurse stopped in to see how I was doing. Each time the spasms had lessened, but I was still in a lot of pain. The nurse offered to get me a towel for my forehead. I didn’t need the towel, knew it was just a question of waiting.
“Your pulse is slower,” Dr. B said. “The pain medication does that; don’t get up too quickly or you’ll feel dizzy; and take it easy for a while.”
I nodded. I wasn’t going anywhere.
After a half hour following the procedure I felt able to stand. Slowly I made my way to have the Rx filled, then took a cab home. I continued to bleed. I’d shared a couple of “war stories” with the nurse. Adventures in pain, stoicism.
She said, “That takes a lot of courage. Most women would just give up — no school, no work.”
I smiled to myself: here’s to guts.
10/2/87 8:50 AM. The other day, after my morning fatigue at 9:30, a cramp developed at 10:30 and quickly escalated. I was on the verge of screaming — already in convulsions from the pain and moaning loudly– enough, I thought, to disturb the household if anyone was home. I’d never had it this bad on the fifth day of my cycle. Coworkers had been nagging me to go to the emergency room; I decided to give it a try.
I tried to call the office and several times had to interrupt my dialing, get through a wave of spasms and begin again. Finally I got Karen. Then it was a question of laboriously getting dressed. I did not go for the amenities — merely threw on sweats and went braless, hair uncombed. Had I the strength and control of my movements I’d have done more.
I slipped my feet into bedroom slippers. Karen and Pam had come for me in a cab, helped me in, and sat me between them. They all but carried me into the Emergency Room, where I sat down, shaking, next to a woman in a leg cast who told me her daughter goes through the same thing. (Imagine a bedraggled, pale, sweat-soaked woman facing a bunch of patients staring openly at this new arrival, who tells them with a smile between spasms, “It’s only menstrual cramps.”)
Karen held my hand, held me across the back, saying, “Poor thing.”
Pam called over for stats, which she also gave to the registration desk attendant. Finally I staggered over, holding onto the partition to give date of birth, mother’s name, insurance, address. “You can die before they take all this down,” Pam said.
“Were you brought in by friends?” the attendant asked, “or relatives?”
“Coworkers,” I said, adding, “and friends, and surrogate relatives.”
Karen grinned. “Sisters.”
“Sisters,” I said.
The attendant asked who my doctor was, which clinic I went to. Pam continued to shake her head, incredulous. “You could die before they get all this down.”
I pointed a trembling finger at the terminal, adding, “And purple’s my favorite color.”
“Okay,” the attendant said. “You can sit down and we’ll get a nurse for you.”
I couldn’t sit down. It was either stand, or lie. First I tried to stand, holding onto the wall; then I figured to hell with it. In a hospital emergency room you let pain override decorum. I lay down by the chairs.
In about a minute a nurse walked in and I struggled to my feet. Once I was in an examining room my shrieks came out in earnest as I struggled onto the table.
The nurse was wincing. “I can’t take your blood pressure with you screaming like that. I can’t hear your heart.”
I tried to choke down the screams. My limbs began to flail. From then on I was enslaved to the pain, shrieking past hoarseness, praying that I’d pass out from exhaustion if nothing else.
Twice I vomited — the first time after crushing the plastic kidney-shaped basin I was handed. I’d clenched my hands from the pain and crushed, then twisted the basin, having to “unfold” it before I could use it.
I was seen by a Dr. F, who along with the nurse asked me about my family history. “What is your normal period?”
“I don’t have a normal period,” I gasped.
“When do you get it?”
“Between 28 and 40 days, usually. This month was 33.”
Often my answers were interrupted by screams; I’d spasm and all speech would go by the wayside. They asked me to answer the questions and I assured them I was trying to. The pelvic exam was a nightmare — probably for all of us.
The nurse had long since put up the guard rails on the examining table. Immediately the rails became a push-pull object on which to vent the spasms.
“We’re going to put you on an IV,” the nurse said, “and give you a shot of Demerol.” The IV was a nutrient solution that would replenish the fluid I’d sweated away. The Demerol had no effect. When the nurse looked in and saw that it wasn’t working, she injected a painkiller into the IV. This second painkiller helped to deaden the rest of me, but my spasms remained. It meant that between spasms I was all the more limp; when they came on again and I had to endure them, I was all the more weak.
Dr. F kept saying to me, “We’re going to find a way to make you comfortable.” Finally he came in and said, “We’re going to give you something in the phenothiazine family, called Thorazine.”
Part of me wanted to laugh; at the rate I was going I certainly looked psychotic. I was literally hysterical with pain. I was ready to take anything short of a bullet in the head.
They sent in someone whom Dr. F called a hypnotist.
“You have to get your mind off the pain in order for the medicine to work,” she said.
“I’m trying,” I gasped.
“That’s not good enough.”
When a scream came out she told me to stop. “No more of that. Now I want you to concentrate. Think of something you most like to do.”
Writing, I thought — but in this setting it didn’t work. I imagined my sanctuaries, relaxation. A spasm hit.
“You’re tense as a board,” she said. “You need to relax in order for the medicine to work.”
“I’m trying,” I said, tears flooding from me. “I feel so weak — ” A thing I never thought I’d say.
“You can do it; you just need to concentrate. Start with the head and work your way down. Breathe normally.”
I’d been gulping air through my mouth; my nose was stuffed. To breathe normally was agony.
“Don’t think of the pain.” How could I not think of the pain? “Now I’m going to turn the lights low, and check back in 10 minutes to see how you’re doing.”
Turning off the bright fluorescent lights was the best thing she did. When I spasmed I bit down the screams and tensed my right foot while gripping the guardrail with my hands. It did the trick until I finally passed out. From then on I drifted in and out of exhausted but blissfully painless sleep, until Dr. F returned to ask how I was doing.
There had been repeated questions as to why I had been sterilized and whether I had ever been pregnant. I explained: No, I have never been pregnant. Yes, I had myself sterilized in view of A, B,and C.
10/2/87 7:35 PM. Take 3 hours of the same yesterday, and three more today, without the emergency ward and injections. No vomiting, but close to it. I have sweated buckets and been at wit’s end.Yesterday I was still doped-out, shuffling and bedraggled from room to room. Joints ached, no fever. I’d been in the emergency room two days ago from approximately noon to 6 PM, when I took a cab home, and listened while waiting to a man who spoke about his nephew’s drug OD less than a year after his twin brother’s suicide. A drug-abuse counselor, the man had a hefty list of casualties.
Pam and Karen had picked up a bookmark of a chorale singer, and left that with a cab slip for the nurse to give to me. This morning I called Kupersmith Florist, to have a basket of flowers delivered to each of them. Pam: “We should be sending you flowers! You really didn’t have to — ” Me: “Look at it this way: I probably can’t appreciate them here as much as knowing they’re brightening up the office.” Added they could also share with Tracy, our new clippings-person, who is learning fast and is, according to Bill, “really putting the office into shape.”
10/23/87. I am looking to rectify 18 years of screwed-up hormones. Compared to that, a month (or even 2) of bleeding may simply be a temporary reaction to the Herculean task of setting unruly hormones into new formations.
J could not understand how, with my screaming and vomiting, my parents never thought of taking me to the hospital. My mother’s ailments had proved enough of a “burden” to my father. My mother, who had also suffered from cramps, was no doubt told for years that it was all in her head — and if she was meant to suffer from something that “was in her head,” no doubt her daughter was as well.
Thus I’d learned to be stoic — and, for several days out of the month, a pariah. I remember a temp stint I did at Avon, which had its infirmary next to the cafeteria. This meant that at lunchtime, pin-striped executives dining on their afternoon fare were simultaneously treated to my blood-curdling screams. When my cramp had passed, the nurse on duty yelled at me, “Don’t you ever come in here in that condition again!” So much for compassion for the sick; I had effectively been banned from Avon’s infirmary.
I simply took myself out of circulation, like an animal who, sensing the approach of death, finds a dark closet or a hidden, private niche. In college, if I could not get to my dorm room, I found an empty classroom and lay on the floor in the dark, out of sight, with a wastebasket by my head. To my mind, I had a problem that was simply part of nature, and for which there was no cure short of a hysterectomy. No sense in announcing it to the world if I could help it; if I hid it to the best of my ability it would not incriminate me (who would hire someone unable to work for several days out of each month?).
The Zen approach: If a tree falls in the forest and no one hears it, does the tree exist? If a woman screams in pain and no one hears it, does her pain exist?
10/24/87 10:30 AM. Very dizzy. Nauseous. I awoke at around 9, sat up, and the world reeled. When it quieted down I went to the bathroom, then came back to bed and lay down. A couple minutes later I tried to rise again, and again the world reeled.
I slowly made my way to the kitchen and tried to cook breakfast; then dizziness and nausea overcame hunger. The pan is still on the stove, and I am back in bed.
Nausea and dizziness are among the Pill’s side effects, which include everything but the kitchen sink.
10/25/87 9AM. Was in bed all day yesterday — unable to read or write, let along edit. Could hardly eat. Couldn’t read, because my eyes were swimming. For a minute or so I felt an overwhelming loneliness. The realization that I might die alone some day, simply — passing. No one to share with. Then I realized: no. There is always the Divine; one is never truly alone. It was at that moment a question of blind faith, because there was no presence, per se. Only the knowledge and the surety that the One, the Wholeness, is there.
11/4/87. One of the appendices in Vol. II of the Summa Theologicamentioned that according to St. Thomas, humans will “receive grace” even though we are “undeserving.” I have a problem with that view.
Deservingness implies worthiness. Undeserving implies unworthy. The view is that no human is perfect; therefore no human is worthy of grace but will nevertheless receive it — in order to influence self and others in the direction of perfection, i.e., toward God.
Unconditional love, i.e., Divine love, to my mind transcends the human concept of worthiness. On a personal level, I have had and continue to have experiences/visions/etc. that I do not question insofar as worthiness. My gratitude is immensely deep; I feel myself to be extraordinarily lucky; however, the point of deserving vs. nondeserving does not arise.
Run the concept of worthiness back, and one can question whether humans (or, for that matter, everything) are worthy of existence. To take that personally is to go toward nihilism, hopelessness. We are all involved in a form of partnership. Partnership is founded on right action, not deservedness; enact one and the other is moot.
This concept of deservedness is something I feel is potentially dangerous because it allows for a separation of one from joy. For how does one reconcile “undeserved” joy? It is as though something that is priceless (i.e., no price is needed) is converted into the kind of priceless that means it can never be repaid. An absence of debt becomes a permanent debt. This is different from saying that grace and/or existence is unearned. Unearned is the same as unconditional.
I have come to view my fortunes and misfortunes as inherently unconditional, and at the same time karmic. Namely, they have a purpose, and one that is visible or not on manifold levels. Lately, it has been physical pain and limitation. There is a reason why I have had cramps for so long; a reason, too, why one method after another has come and gone.
For one thing, it teaches me about physical pain: when to fight it and when to succumb to it. How to attempt to heal it, and how to endure the side effects. How to set priorities according to need.
One does not ask why; one merely attempts to thrive in the face of opposition. By thrive I mean learn, transcend. For me, transcendence is part and parcel of endurance.