Power

30 April 2008

I can’t stop trembling. I can’t stop crying. Everywhere I go, everyone I talk to, gets five minutes of peace before I break down.

Today was my pre-operative nightmare. I was handled by so many people I feel like I have disappeared. That is the way they make you feel: as though you, as a human being, do not exist.

They wanted my temperature. They wanted my blood pressure. They wanted my blood. They wanted to hear my lungs. They wanted to hear my heart. They wanted to radiate my chest yet again (how much radiation from x-rays does it take before you get cancer because you’ve had so many x-rays?). They wanted my history, several times. They wanted my allergies, several times. They wanted specific details on every time I was under anesthesia and what happened.

What happens to me under anesthesia? I never know. Sometimes, I am fine and silly. Sometimes I am waking up under it to a nightmare. Sometimes, I wake up fine except that I feel deathly ill.

The anesthesiologist tells me the “twilight state” thing they have done for my colonoscopy and some of my dental surgery is not anesthesia. Okay. I don’t see the difference. They both put me to sleep, in terms of my brain at least. It sure seems like anesthesia to me.

The first time I had anesthesia, I was five. Back then, it was routine to take out perfectly healthy tonsils of very young children. I do not know why; it makes no sense to me. However, mine were far from perfectly healthy. My tonsils and adenoids were so infected and swollen that I was going deaf. Something had to be done. I was five years old.

I had bad postnasal drip. They didn’t count on that. I woke up during the tonsillectomy, a terrified five-year-old. I couldn’t see, because there was a sheet over part of my face. I could see the bright light behind it, though. I could hear my doctors talking, the ENT and my regular doctor and another I didn’t know. I could feel pain and burning and a scraping feeling in my throat. I tried to talk, and I couldn’t. They realized what was going on, and said “Uh-oh, she’s waking up.” Suddenly, I was asleep again.

When I awoke, all the other children that had been with me at the beginning were gone, home in their nice warm beds, home with their parents and dolls and television shows, home in comfort and safety. I was alone. And worse, they wanted to keep me overnight for observation. I wasn’t bouncing back like I should. I couldn’t keep anything down. I was sick and miserable. But I knew one thing: I was absolutely not going to stay in that hospital. I knew, in my five-year-old mind, that if I did, I would die.

I don’t recall what I did to somehow let my mother know that I could not stay there. But somehow, her face became as terrified as mine, and she suddenly insisted to the doctor that she was going to take me home. I remember both my parents and the doctor on the back stairs of the ancient hospital, arguing about the risk they were taking in signing me out of the hospital. My father was livid at my mother, believing she was doing the wrong thing. Our doctor was livid at my mother, believing the same. I only knew that home was the place I needed to be, and that home was where I would heal.

I lay on the couch with my new doll, feeling like death warmed over. But my heart was calmed and I knew I would survive.

I did, of course. It took me nearly a year to get back all the weight I lost over this traumatic experience. Eventually, I was fine physically, but bore an emotional scar that would never heal.

Not long after that healing, I had to undergo another battle with anesthesia with an oral surgeon. Even that young, my teeth were terrible; they always have been, and I have asked for years for dentists to just pull them all and give me dentures. Of course, they refused. Now I am missing half my teeth, and what is left is rotten. Had they listened to me long ago, when I had the money to pay for everything, I would not be in this condition. But they never listen to me, doctors, or dentists. They talk beyond me, over me, around me. They do not ever see me, or hear me.

I had to go to a larger city to get my first oral surgery, because there was no facility where I grew up that could handle it. It was nearly an hour’s ride there and back. I remember the dentist putting a mask on my face, which terrified me (I am asthmatic, and have been all my life; no one should ever ever do anything to an asthmatic that threatens to rob them of breath. It is incredibly cruel.). He was telling me some fairy tale to put me under. I fought the mask, but the mask won.

When I came to, I felt like hell. And then I had to get in a car for an hour. I spent most of that time vomiting. I never got over the memory of that awful mask and the sickness I had to endure after the surgery.

The next time I had to have oral surgery, I nearly screamed at them when they came out me with a mask. One of them sarcastically said “Would you rather have a needle in your arm?” And without hesitation, I answered “Yes!” I took the needle, and for the first time, I woke up when it was over, feeling only a little giddy and nothing else. It was a tremendous relief to have that happen for the first time. I thought the needle was the key, and that ever afterwards, I would be fine.

It wasn’t to be. The next oral surgery, I awoke, sick as a dog, vomiting again. The one after that used Versed, and put me in the “twilight” state. I felt a little sick and had a lot of pain, but it was not as bad as the one before. The next time, it was a colonoscopy, and the same twilight sleep. Except that they did not listen to my strongly written warnings about my problems with anesthesia, including waking up, and did not give me enough medication, or pulled back on it for some reason I still don’t know. What I do know, is that I awoke during the colonoscopy, and in spite of what Katie Couric or whoever might say, for me it was excruciatingly painful, and I screamed until they put me back under. I awoke screaming. They had to call my husband back to try to calm me down, which didn’t help much; he is lousy at helping calm anyone down. He can’t even calm himself down. At any rate, the doctor who did the colonoscopy strongly suggested that should I have a recommended endoscopy done, it should be done under general anesthetic. I have yet to have that endoscopy.

I told the anesthesiologist all this, and the only thing that seemed to interest him was the vomiting. “We’ll give you something to help with that,” he said, as though that would take care of everything. Will it erase the horror I have gone through? No. Could he guarantee I would not be conscious? No. What he did guarantee was that, with general anesthesia, they would have to intubate me, and put a tube down my throat.

Among my many anxieties, one of the worst is my swallowing/choking anxiety. I cannot take a pill, even a small one. I have to dissolve or crush any medicines I take. Or get them in liquid form. One doctor decided to be a smart-ass with me one time and said “Well, you swallow food, don’t you?” I sighed and said “You have no idea how long I chew before I swallow.” It takes me at least a half-hour, if not an hour, to eat a sandwich and a side.

The idea of a tube being stuck in my throat, in addition to the anesthesia terrors, and, worst of all, the idea alone that someone is going to cut into the tenderest flesh I have, in the most private part of me, was just too much. I started sobbing.

He did not understand why I was so upset. I was too upset to try to get him to imagine that he was going to have a tube rammed down his tender throat, waking up choking on it and terrified; dangerous drugs poured into his body that may kill him; have no idea if he was going to wake up during surgery, and have to live with the horror of being aware of the cutting and the pain and the humiliation; and that the surgery would involve cutting out a part of his penis, while students watched, that could likely render him unable to ever have a normal sexual relationship again. And that he would probably have to go through all of this more than once. Had I been able to get him to think about this, maybe he could have understood.

He didn’t, of course. He just thought I was some kind of blubbering, anxiety-ridden nutcase.

I asked him for a copy of the notes written up by the doctor who did the colonoscopy, so I could find out what went wrong. Couldn’t do that, he said; rules, hospital policy, you understand. No, I don’t understand.

He suggested a spinal. I showed him the paper I finally found last night, showing that I have spina bifida occulata. He said they could still do it, they would just have to do it higher up. I said it would be painful (which is true in every single thing I have ever read from anyone who ever had a needle stuck in the their spine); he denied this. I pointed out I would still be awake, and I wanted to be completely, totally, absolutely unaware of anything. He said they could also put me in the twilight state. Sure, that’ll work – just as well as it did with the colonoscopy.

Three hours from the time I arrived, I was done. And still knew as little as I did when I went in. I was emotionally and physically drained. I went to the bus stop, looked at the schedule, and realized I had just missed the bus – the one that only runs once an hour.

I fell apart. I smoked a cigarette, and tried to decide what to do. I was not thinking clearly, but all I could think of was to try to walk somewhere I could catch a bus home. I walked, weighed down with my backpack and my jacket and my bag and my hat and my cane, and sobbed, lost and alone.

A woman in a campus police cruiser got out of the car, and asked if I was alright. I sobbed “No” and tried to tell her what was gong on. She asked where I lived, and bless her heart, she offered to give me a ride home, which she did. I don’t think I could have dealt with anything else. I needed, just like that five-year-old, to be home.

And now I am, and sit here writing, feeling more and more shaky about this whole thing. I don’t want to do it. I don’t want to do it. I don’t want to do it.

I am so sensitive, too sensitive for this world, it seems. My heart cries out that if I do this terrible thing, if I allow this mutilation, that I will never be the same, and will wish I had never done it. I think, in my awful state, that death may be preferable to living with one more terrible trauma. Yet I know that I will probably go through this, some medical martyr, because they tell me I will die otherwise, and I truly do not want to die just yet. I hate them for making me feel this fear, and for making me feel trapped. I hate them for talking down to me, for not seeing me as a human being. I hate them for using that word “cancer” as an excuse to mutilate me forever. I hate them for having power over me I did not give them.

I want my power back. I want my life back. I want to be strong, and stop sobbing, and tell them exactly how I feel about their cold, sterile, heartless attitudes.

And maybe I will be able to do just that.