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 2
The Pot of Painlessness at the End of the Rainbow, Part 2:
1985-1986 (age 26-27)
2/9/85. On Friday my period began at 9:15 AM. I’d braved the Boston Deep Freeze and the bus and subway to get to work. Cambridge is filled with ice patches; the wind was blustery and snow-frozen-into-ice was blown into my face dead-on. People around me slipped and fell; I was sliding.
By 10 AM I couldn’t walk. As I stood, to attempt to get to my cot in Morgan Hall, a searing pain lanced through the right side of my groin and I listed to the right. My entire right leg was inflamed.
Karen walked me to Morgan, where I lay down and napped. My overall cramp diminished but my right side was still pained and I thought I felt a bit of swelling; perhaps I’d pulled a groin muscle. I later discovered I hadn’t — I just had a very severe, very localized cramp on top of the general excruciating pain. The localization was something new. (Shit! Fifteen years and I have to get a new kind of pain?!)
I thought I’d try to make it back to the office. When I called, Bill suggested I stop at the Health Center. I asked for an escort because I still had trouble walking. I waited on a bench outside the Personnel office.
Between 5-10 minutes later, hurting more, I began to wonder if Bill realized I’d asked for someone to help me walk. I staggered back into the Personnel office and called again.
This time Jim answered. As I spoke with him another wave of pain hit on the right side. I lowered the phone, then put it down and calmly asked the woman at the desk for a trash basket. And gave up my breakfast.
One of the professors stood off to the side. I turned to him when I had finished and said, half-seriously, “Sorry to have been so gauche.”
He began to escort me back to the lounge when we met Karen; they and a woman from Morgan supported me as we took the tunnel to the health center in Cumnock. I’d had to pause about every three steps to breathe deeply until a contraction passed. Karen massaged my back, saying over and over, “You poor kid.”
I’d been cracking jokes. She was surprised at my spirit. I said, “Well, it’s a case where you either have to laugh or cry.”
“Yeah, but most people would cry.”
Professor B stayed with us. I leaned on him as well. We passed an industrial-sized dolly and looked at each other.
Karen: “Shall we steal it?”
Me (smiling through pain): “Why not?”
I lay on the flatbed in a fetal position and the others wheeled me through the tunnel. The woman from Morgan held my hand. Karen and Professor B negotiated me around corners and we joked as I rode with gritted teeth. (“Well, here’s where we let you go and let you slide to the bottom!”) When we couldn’t take the dolly any further I looked up and asked, coyly, “Is this where I pay my fare?”
4/16/85. Sitting at the Harvard Book Store Cafe on Newbury Street. Doped up on Zomax and aspirin and a touch of Black Russian. I had napped off a cramp early in the afternoon (flow began this morning). Six Zomax left, 14 if you count the sample expired since 2/82.
I have, after today, 5 days of vacation. I want to get in some Play this week. Part of me wants to visit with friends; another part vants to be alone! But adventurous — explore Rockport or sleep on a beach or something. Or hop down to D.C. and personally get to touch the Vietnam Memorial. Or hit New York again.
Part of me wants to get on a plane and fly — anywhere. Like Alaska.
And part just wants to bike, or sit outdoors, write, finish up the work outstanding, and bum around Boston — take in concerts and events and what have you, shop the Haymarket, get to be a tourist here, with home not far off.
I did zombie out earlier today. And the letters unwritten hang like albatrosses around my neck. I want to catch up on things. Take in a movie or two.
I will probably do this. As long as I also play. Important! The weather has been superb.
10/3/85. I got into the office at 8:50, pale and in pain. PMS or some bodily reaction to my workout. I’d performed my usual routine, actually one a bit easier. Five miles pedaled. I stayed, for the most part, to 10 lifts per weight instead of stretching my endurance to 12 or 15. I passed up rowing altogether.
I was fine as I sponged down with paper towels in the bathroom. Then I performed a slow head circle to loosen up my neck….
And saw spots.
Color drained from my face at once and I felt a hard twinge. I was nauseous. Half-dressed, I sat on the toilet seat, the rest of my clothes and coat hanging askew off the stall’s wooden door. I placed my head between my knees.
My breathing was uneven. I couldn’t tell if that was from exertion, or pain, or nausea; in fact, I hadn’t been breathing hard. Exercise makes me sweat; it doesn’t make me gulp air.
The knowledge of my breathing came to me as though from a distance. I was instead wondering how to get rid of the nausea, let it run its course on the path of least resistance. I wondered verbally, thinking to myself, repeating phrases over and over.
Finally I stood up. My face was rosy once again. Then it drained, pale.
My lime green sweats were balanced on a ceramic sink corner. Well, if someone came in and found me on the floor it would be embarrassing, but would prove to be for the best. I didn’t want to stagger out and undergo that extra exertion in the rain. I felt hampered and concerned but in no immediate danger.
My stomach began to unclench. I felt warmer; I’d been drenched in cold, nausea sweat after I’d wiped the warmer, workout sweat away. Thought: Low blood sugar? Thought: No wonder they told me I can’t give blood.
I pictured a peasant woman out in the fields, lying down in tall rushes or wheat stalks to wait for her body to recharge. I pictured a Chinese woman; I had just finished reading Maxine Hong Kingston’s The Woman Warrior while cycling. All those stories of strong women able to bear 50 pounds of water on their backs, bending hour after hour in the fields. Superwomen of a more “primitive” type than the mother/wife/executive.
You don’t see them when they lie down in fields, clutching their stomachs and breathing through their mouths. The tall grasses hide them, make them invisible when sick.
Such were the scenes that ran through my head as I lay on the cool tiles, clutching my stomach and breathing through my mouth. When I felt color begin to creek back into my face I told myself, “Give it a couple more minutes. Give it until you’re bored with lying down.”
Pretty soon I was bored.
Then it was a question of discipline. “Take 10 deep breaths before you try to get up.” (“Eat all your peas; then you can have dessert,” my mother said in my head, in tandem.)
I lifted myself to my knees. “Don’t get up too quickly.” (“Don’t wolf down that blueberry pie; take small bites.”)
Good, good. My face doesn’t drain of blood.
I finished dressing as another woman walked in. Hellos, talk of the over-filled wastebasket. Then I put on my coat, hoisted my backpack, and left.
I was cramped and pale again by the time I reached the office. Said good mornings through blanched skin and nausea, then went upstairs and put on a pad, just in case; came back down and took a Nuprin. About a half hour later I felt fine.
1/25/86. “The test of whether one has chosen rightly can never be made by considering what is best, only by whether one has rightly judged what made one happy.” — Isak Dinesen, Letters from Africa
1/30/86. Mensis began this morning, closing off a 43-day cycle. Irregular as sin. So far there have been only twinges. The Nuprin has alleviated those.
I read of Isak Dinesen’s overwhelming physical pain and disability. Her biographer Thurman comments, “Unfortunately it was not ambrosia but amphetamines that would give her the overdrive she required, and late in her life she took them recklessly, whenever strength was needed at an important moment. From her doctor’s point of view, or from that of any prudent person, she was running herself into the ground.”
If prudence presupposes rationality, then I am afraid I am not prudent. I identify both with the physical pain and the overdrive; in her position I am quite sure I would do the same thing. Earlier, Thurman quotes Dinesen from Out of Africa: “He lives free who has the strength to.” I have above my word processor here, “That is called freedom when you do in your work time what you love to do, and in your spare time that which is required of you.”
I meld the two. To do what you love to do is freedom. Freedom requires strength. And whatever strength requires, that is the price paid for one’s freedom.
7/24/86. I’d gotten my period Tuesday morning at 8:30. At 10:15 my legs began to paralyze, my pelvis inflamed with pain. I went down to Morgan, where the master key had been stolen. I had to wait for Security to open up my little room for me.
I was in unabated agony. After the full wave of pain, screams, and vomiting passed, a second wave began. I’d pass out from the pain and awaken, after a short period of unconsciousness, to more pain. I was still in agony at 4:30 when I crawled out to take a cab home. I was still in agony at 2:30 the next morning, when finally I was able to fall asleep.
Yesterday I was weak as a kitten. Out of it, barely able to function. Beth: “If the pain’s gone on for this long there must be a deficiency.” Pam: “Next time it happens, just go to the Mt. Auburn Emergency Room. Be bitchy. Say you’ve had 16 years of this and you can’t take it any more.”
8/12/86. “You look like you been floatin’ in the Charles, lady.” A street worker, probably commenting on my downturned face from lack of sleep. Waiting now for an almost-forgotten doctor’s appointment, a 40-minute walk from home.
8/13/86. Dr. S. had given me a prescription for Naprosyn: “There are stronger prostaglandin inhibitors, but if this works we won’t have to go to them. If not, we’ll just keep trying.” She added, “The prescription will say to take this twice a day, but you can take it more often if you need to. I won’t write that down because it will raise eyebrows at the pharmacy.” Blood pressure is a terrific 90/70.
8/27/86. 10 AM. Rose at 6, took 2 Naprosyn and breakfasted, returned to word processing.
11:45. Zombied out. I am lightheaded on the medication and feel dull discomfort where Naprosyn declares war on my prostaglandins. Practicing slow, deep breathing, flooding my pelvis with oxygenated warmth. This is a day I’d like to go home, stretch out on the bed, and sleep. Lunch hour is just a few minutes away.
1 PM. Took 2 Naprosyn 15 minutes ago; pain still increasing. Went through New York Times and Washington Post. Every discomfort impacts me now, full-force. The worming of soaps into the music. The nausea of ambient cigarette smoke. The incessant hysteria of a phone ringing unanswered. The muscles in my pelvis strain, pulling, pushing. Legs like lead.
11:44 PM. By the time I’d returned to the office I was nauseous, could hardly walk. Said I was going home and bypassed the “high priority” word processing task left on my chair. I struggled to the bus stop — stopping every few feet to hold into a wall, a fence, breathing deeply until I’d relaxed the cramp enough to continue on for a few more steps. Sat doubled over on the bus, then inched my way home. By 2:30 I felt much better, able to eat: a required accompaniment for the Naprosyn. Trouble is, when the pain begins and builds, whatever I eat comes right back up.
At around 8 a cramp set in again. Took 2 more Naprosyn, played the “Pain Reliever” tape and entered trance. My body was completely relaxed, except for the spasms in my pelvis.
“All your internal organs are open,” the woman on the tape droned. “Completely relaxed.”
“Fat chance,” I replied.
8/29/86. A convulsive cramp hit at close to midnight. Took 2 Naprosyn (I’d taken 2 earlier yesterday, at 10 AM) and continued to jerk in agony, breathing through my mouth, body rigid to stifle screams. It was 2 blocks to Mt. Auburn Hospital but I’d wait for the cramp to pass. There was no way I could walk; they’d have to carry me out. If I called for an ambulance my landlord would be awakened for something that eventually passed; I’d be better off screaming.
9/14/86. Last night, as I lay half-conscious, I thought upwards: “Thank you for this vessel — it’s a lovely one.” I ran my hands lightly over my forehead, nose, cheeks, eyes, lips. Arms. Sternum, breasts, stomach, loins, thighs. Loving the imperfections. Knowing I’m locked inside it when there is pain. But feeling — knowing — that behind the bright eyes, the bow smile, and the prominent cheeks, there is a recognizable spirit. One that, for the first time, I can see through the skin. Paradoxically there is a further claiming of my body as well — that whatever it is and whatever has happened to it, it is a vessel that has kept me in good stead. It has allowed me to be in the world, contained in a package, a symbol — the body (concrete) being a symbol of the spirit (abstract).