*To the Reader:
Here to Chapter 11, we have skipped six chapters. I did this to buy time to alter the sequence of info and themes in those skipped chapters. Also, as I’m ultimately hoping this will lead to advance orders for the book to pay for its printing. Please give $10, 20 or 30 as you are able, and you will be put on the list and will see the finished book within a year from when I finish this section of the book, which covers the period I was briefly home before returning to school.
At home, from September to December, it was all I could do to keep my insides from spilling out. A rubber hose catheter hung from my urethra, and a urine bag slacked against my leg; I had a colostomy bag adhering to my stomach, and a mood that oozed with depression, except when I leaked anger outright.
Without much physicality to my days, movement was e-motional. I experienced moods so different they felt more like places than states of being. Each emotion had its own energy field and atmospheres, its own culture and conventions. I visited others, but I lived on the planet of Anger. It was my custom to greet most visitors with an irritable and forced “hi,” respond to news of their lives with jealousy, dismiss them with sullenness, and in general my energy seemed directed to rip off the face of the world.
If the hospital were another world, home was at least a familiar constellation. There were no mosquito-like technicians at 6 a.m. sticking their needles noses of steel in my flesh for blood samples, no scrub-face doctors and interns at 6:30 peeking under the big tent, no squeaky-shoed nurses reminding you in bright cheery voices at 7 a.m., “It’s morning.” The sheets weren’t made every day, and breakfast didn’t come up cafeteria covered-dish style.
My mother orbited around the nucleus of our family, functioned as a sun and moon to each of the little planets. She heralded our mornings and set on our nights. Steven’s wake-up at 6 a.m. was a veritable alarm; Ma seemed practically to jerk his head out of his oatmeal to keep him from falling asleep at the table. “If you don’t leave soon, Stephen, you won’t get back in time for school,” I’d hear her say in the rushing urgency voice. His grumps were the same every morning: I don’t care, my bag’s too heavy, Ohhhh Maaaa, I’m too tired, or I don’t want to be a paper boy, can’t I just go back to sleep for a few minutes, the last objection enough to have her promising bodily harm if he didn’t leave soon. Then I’d hear both their footfalls down the back stairs, Ma saying, “I’ll take you as far as Pleasant Street, then you have to go from there.” Then she’d burst in the door again and I’d hear brisk footsteps into the back bedroom for the cheerful “morning” to Chrissie. We lived across from the high school, but Chrissie went to a special vocational school for commercial art and had to take a special bus.
Ma’s next wake-up was to Joanne and Suzy, waiting for their responses before she came back into the kitchen to set out the cereals. Listening to her say the good mornings, I’d whine, “Can’t you people be quiet?” Suzy and Joanne fought over “the brush,” or who ate the last of the cereal, and I’d whine again. Billy was the last wake-up because he was a senior in the high school, which was right across the street from where we lived. His conversation was the quietest, just grunts, and his coffee, bacon, and eggs the best smells of morning. I still didn’t eat eggs, and I didn’t drink coffee because I didn’t want to be too awake, but I didn’t object to the smells. When everybody was out of the house, Ma went back to sleep in Chrissie’s bed, and I slept until I heard the toilet flush. Then my mother would bring me the basin and washcloth, and the day would begin.
I appreciated those sleepy, warm weeks of mornings between September and October. When the kids came home from school my mother hustled and bustled around them, and they avoided my room like I was “the alien,” which is what I had come to feel like. I didn’t relate to them anymore, unless it was to enlist one of them to run and buy me an order of chicken wings from China Roma, which I craved like they could restore me. Or like if they interrupted my crying, saying something I’d spit something spiteful against my mother, like I did to Stephen one day: “God did this to me, Stephen. Hear me? God.” There, that should get her.
Bright moments were the twice-weekly appointments with Barbara, a visiting nurse who grew up in Revere. One day Barbara showed up with a nursing journal article about the stages of grief, a seemingly new concept. After she showed it to my mother, who was encouraged by its information, she held it out to me. “Carolyn. I think you’ll find this very interesting.”
I read the article about the stages of grief. Random moods lined up in their planetary orbits and I recognized myself as the Galaxy of Grief.
“First there’s shock,” I told Jeannie, confiding, “I’m over that. Then there’s Denial. I think that happened while I was in the hospital when I tried to pretend everything was really all right. Like, if I acted hard enough it would be true.
“Then there’s Anger, and I can’t remember what comes after that. I think it’s resignation or something, or acceptance.”
When I showed her the article, another friend recited: “God grant me the serenity to accept what I cannot change. The courage to change what I can, and the wisdom to know the difference.” I was elated to hear the words, then remembered with gravity. Wisdom. That’s what I answered my first semester in one word to rhetoric teacher’s question, “What do you hope to get out of going to college?” I remember thinking, “Well, I asked for it.”
I knew I couldn’t change the accident, but I thought I should be able to get over this state of grief, and hadn’t they said I should be over the phantom pain in three months? I recognized I lived on the planet of anger, but I didn’t want to be an angry person. What if I could just be out of pain? I’d have the courage to do whatever it took. It’s not my house, I thought, it’s the pain that’s the problem.
The phantom pain became a focus. Whenever I felt emotional pain it worsened the phantom pain, and I found living with it intolerable. I thought this was supposed to go away. The fact that it hadn’t must have been my fault, I reasoned.
Hedberg lined me up with a neurologist who worked with pain patients. Dr. Websic invented a surgically implanted transistor that was implanted under the skin. It was controlled by a remote. My biggest fear was electrocuting myself in the bathtub, but I felt a new hope that if at least I wasn’t in as much pains I could go back to school.
I was admitted in October for the surgery and discovered a curious thing. It wasn’t as bad in the hospital this second time around. For one thing, I was on Baker 9, one floor below the surgical recovery floor with its sickening smells, and I could walk around now. Also, I didn’t have to listen to fights in the morning, and fewer rounds of morning visitors interrupted before breakfast. However, one reprieve was distressing.
When Jeannie came to visit, I told her the details of the pain relief surgery as Dr. Websic had described them.
“It works on the theory that nerve impulses for pain travel at a slower rate of speed than sensory impulses,” I parroted the doctor. “This transistor sends messages to the pain center to speed up the impulses to the brain. It changes the messages so you don’t feel any pain!”
“Really, Carolyn! That’s very clever of them,” Jean said.
“I think there’s something wrong with me, though Jean,” and I started to cry, and Jean comforted me with a hug, and in that high, squeaky voice reserved for hard emotional truths, I confessed over her shoulder, “because now the pain isn’t so bad.” She pulled back and looked at me. “I think it’s almost gone,” I cried.
“But that’s marvelous! Carolyn,” Jean said.
“No, it’s not,” I said, “Because the surgery is Wednesday.”
“But you don’t have to have it, Carolyn,” Jean told me.
“I don’t? But the doctor scheduled the operating room and everything.”
“It’s an elective surgery; it’s no problem for them to cancel an operating room.”
I nodded my head. If my mother had told me this, I would have doubted her, but Jean would know. My spirits picked up. Jeannie was the best friend, never mind the best nurse I could have. I showed her a book one of the other patients had given me, Stranger in a Strange Land,
“‘Grok,’” I said. “That’s what they say when they feel they truly understand each other. Like, I “grok” you. It’s science fiction, but it’s interesting.”
Jean laughed like she was a baby and I had tickled her in the belly.
I answered all Jean’s questions about how of each of my brothers and sisters were doing. I felt as good as I’d felt the day I’d had my Siddhartha revelation, but Jean warned me that the pain might only be going away temporarily, and I should stay in the hospital yet another day to see how I felt.
“You know, Jean. One thing I’ve learned. People are always bummed out about something, and most of the time it’s something that will change, or that they can change or even get over. When I was in college, I remember how great it felt to be bummed out. It was so good to tell somebody else how bad you felt. It made you feel closer.
“But now, I can’t even tell people how bad I feel. Everyone wants to know how I feel, but they really don’t want to know, you know what I mean? And there are not even any words to describe how I feel anyway. Like the phantom pain. They tell you it’s not real. They ask you how you feel, and you say you’re in pain, they say, real pain or phantom pain.”
“I know, I know. It’s true, Carolyn. I get to feeling down in the dumps, and then I think of you, and I think what have I got to complain about?” This conversation stands out in my mind because it was a rare moment of detachment, and I know now Jeanne also suffered from a kind of pain that was not considered real, and she never complained, so she suffered alone. I felt like one of the few people who understood her.
Baker 9 and that one day’s awareness of phantom sensation – feeling the pins and needles that most amputees feel after amputation, instead of feeling the pain that had dogged me – was a turning point; the moment was quiet long enough for me to consider that I may not have to have a surgery. The doctor had talked about alternative treatments: anti-depressants, psychotherapy, and a TNS, trans-neural stimulator that you hooked up outside of your body. I went home with hope.
Those few days away from home made me realize that home was not a good place to be. It was little wonder the phantom pain didn’t stop; I know so much now about the relationship of pain to tension, to loss, to unhappiness and depression. Of course I was in pain, and I never properly learned to talk about the emotional pain; we didn’t do that in my family.
Home again, back on my home planet, I hated my unhappiness and myself. So I thought I was going to have to go to a shrink to find out what my faults were so I could fix them. I asked to see a psychiatrist; Hedberg referred me to someone in Hedberg’s building. With his tweed suits and a jaunty cap, Dr. Mann was a dapper doctor of the psyche. And he was a sham. So was I. A performer since childhood, I acted like: I’m a rational person. I can figure out how to cope; you just make the pain go away.
I also didn’t trust him to believe my pain was real. And I had no words to describe it, nor answers to his questions about how I was doing other than fine. I batted my eyelashes, and denied there were any problems at home, just as I had covered up as a child.
If it were today, it would go like this:
– Sweet Girl. Look at me. I am lying to you: It will go away.
You all keep saying that. When?
–When you adjust. When you get an artificial leg. When you accept it. I can give you this pill; it will make it better.
Thank you, merciful doctor.
–Are you relaxed now?
As much as I can be.
–What do you feel?
I feel my leg. It’s burning.
In my left foot, no on the back of my thigh; no, it’s in my foot again – it’s like water; it builds up; it blasts, like those hoses blasting at protesters. This water pressure hurts like a balloon about to burst. Give me a few minutes. I breathe.
–What are you feeling now?
Nothing. Pins and needles. Warmth; it’s just asleep.
(Should I tell him about the time when I was lying down, and I was lifted off the bed by my loins, and the piece, the brutal hacking of my physical person was carried away to slaughter. Hang it on hooks and beat it before you dump it.) No, he’d say:
– That’s torturing yourself; that’s sick.
I’m sick. I told you it was brutal.
–Are you sure you’re not imagining this?
What’s the difference?
–You’re a journalist. You can’t win an award for superior journalism with a piece of fiction. Sometimes we think things happened which we really only imagined.
I’m telling you what I felt. (You weren’t there, so how would you know any way. Are you going to lock me up now? I told the truth. I felt it. Better keep that to myself.)
–Where else do you feel the pain?
Sometimes in my urethra, it’s like a kettle whistling with pain, and the only cure is bed rest and painkillers. It’s often connected with feeling angry, so it keeps me honest. I must always look at my anger, for that matter any of my feelings.
–Where else do you feel it?
–The phantom limb pain.
In my groin, poking hard, poking, And I’m going to cry because I have to when this happens. Cover yourself, or you’ll get drenched with my tears.
–Can you tell me any more?
How do I talk about pain? Have you ever had a toothache, an earache, or a headache? A backache that went on for weeks? Those are the aches; if you don’t feel them now do you remember them?
– You feel an ache?
Yeah, lots, but not from the phantom.
– What does the phantom feel?
Have you ever had a charley horse? Spasms in your back that sent hot, searing pain down your legs. Remember how you just wanted to scream? Those are the muscles pains.
Have you ever burnt yourself on the stove? Had a paper cut, a cracked heel, any of these? Those are nerves on the surface of the skin, the most sensitive organ of the body.
Ever had a migraine? A world of hurt, your mind in a vice, a helmet of crushing headache? Well, sometimes that world of hurt is the leg, intensifying in the foot, and it makes me fucking mad. Because I have to do drugs, and I hate to do drugs. I value my consciousness.
And doctor, which one of those pains will cause you to curse and say, “Oh, I know that one. That’s unbearable.”
–We’re talking about your pain.
But you haven’t heard it all.
–Can you tell me anymore?
Let me give you a map. A map of the body. I’ll make a legend, and then I’ll show you. OK. See right here at the groin, those dashes – that’s poking, hot poker, ice pick. The “x”s under the knee? That’s a slicing: a razor, grass blades, lobsters. Those asterisks? Bee stings when I’m sleeping sometimes. Wake up with bees in my hair leaving their stingers in and it doesn’t stop hurting until I pull the last one out of my scalp. Had enough?
You want the whole truth?
Here. These squiggle lines. It’s an acid wash up and down the back of my leg that builds up in intensity until I can’t stand it; but I must, so I have to lie down and breathe into it. I learned my biofeedback lessons: My hands are heavy. My hands are warm.
Look through my third eye between my eyebrows.
The worse is the feeling of grit and gravel that goes on constantly, gets worse then better and worse again until a painkiller turns the leg to rubber. But I could be wrong. I could have the acid wash tonight, and tomorrow I might tell you that’s the worst.
–It’s pretty bad, isn’t it?
It didn’t go away.
–How do you cope?
I don’t. I’m a maniac. I’m a mad motherfucker.
–Tell me about your dreams.
First, we were sailing. My brother Bill threw an anchor out to me, and it hit me in my leg and pulled it to the bottom.
Once we were skating. Round and round on a pond and a skate went through me and cut it off. Let’s see. There were three.
Three dreams at the beginning about what happened. My brother was in all of them. Do not ask me why.
–What should I ask you?
Ask me for another.
–Ah, yes. What can you remember?
Sitting on a bed, playing cards. My right leg in half a lotus. My left went right through bed and under the floorboards; it stuck there, so I didn’t move. Just kept playing cards. No sense in making a scene.
–Have you ever made a scene?
In my dreams? Once at a concert. You had to go through lines and lines to get to turnstiles, which let you in, and I got in the line for mothers. When I got to the miniature windmill barrier, they said, “You can’t go through here. You’re in the wrong line.” I said, “I can’t be. I can have babies.” They said, “Sorry you can’t come through here,” so I just stood there and wouldn’t move. “I want to go through that line,” I said.
–So. That was a scene.
It was a scene to me.
–Tell me more about the pain.
That’s not painful enough?
–No, the phantom pain.
Let me tell you about phantom pain. And you get the tape recorder and have it transcribed, and put it into your medical manuals. Because I do not want to have to repeat this.
It didn’t go away.
My central nervous system didn’t forget. The central nervous system is a whole. The whole is the family, and it’s like the murderer’s victim: though she’s gone, she’ll always be with the family in memory, and it will always hurt that she can’t be there in this material world of the senses, of feeling, of loving, of living, of being present through the same passage of time as the others. And two little children cry for their mommy, and one ex-husband has been recriminated, and nobody knows the real truth about who killed her, but the truth they do know is she is gone. The family knows she is gone. They know she died brutally.
Nobody can say what causes phantom pain.
The body is the family, and the phantom is the missing member. Memory is knowledge. The cortex, vortex, brain hears, sees and smells, and feels and records. It’s still alive, and it has not forgotten.
But that’s not the whole story. Not everyone has phantom pain. For most people it does go away. Maybe their new body becomes familiar. I don’t know. I’ve heard only two percent of amputees have chronic, intractable phantom pain. I know the odds are higher for pain if the amputation was traumatic.
You want to know what it’s like?
–Yes, tell me what it feels like.
You know the Road Runner and Wiley Coyote? The cartoon? You’re the roadrunner. Beep Beep. Flying fast, away from Wylie. Oh, oh. Track derailed; you got to stop short. Stop short; put your brakes on, heels first. Oh, oh. Leg bones screech and poke through the feet-flesh, scraping asphalt. Hurts. Pain. Can’t stand it. What’s happening? OK, now steady.
You tell yourself: “It’s not real. Can you tell yourself that?” I say: It’s not real.
It’s not real. Repeat that. Over and Over. Breathe. Nightmare nights. Nightmare days. Being beaten down day after day, heroic mythical Sysiphisian battles to get up everyday and then another. Another what? Another day that is your life. Another human doesn’t batter you; there’s a softer, more insidious, battering of isolation and depression. You are all alone in pain.
And I want to get good and mad. Say, “I’ve had enough. Enough of this shit.” Draw the line.
One problem. It’s real. and anger seems to make it worse.
–That must make you really angry.
Tell me about it. I’m tired of this talking.
–But, you were telling me about anger. . .
I do get mad, but that just makes it worse. I can only go so far with anger, and then I have to surrender.
–How do you do that?
I don’t know. I fight until I’m too tired, I guess.
Then what do you do?
I let it all run over me. I breathe deeply, and remind myself I’m still alive. What can I do? I listen to my heart and my breathing; depending on how long that won’t work, I reach for the pills. Eventually, I reach for the pills if it goes on too long, like hours and hours. Muscle relaxants will help if it’s triggered by a muscle spasming.