Illness, Alienation, and PTSD – Part 2

Read Part I.

One morning when my mother was fixing my braids for school, she left me with one done to run downstairs and swap the laundry. I don’t remember the pain, but I recall being bent over with my hands on the floor. She says she heard me calling her, and she came back up to find me like that. I was taken to the ER and admitted to have my appendix removed, which burst on the operating table. But for the fact that I was in surgery, I would have died.

When you have an appendectomy or an intestinal blockage, the treatment includes having a nasal-gastrointestinal (NG) tube through your nose and into your stomach. The NG tube is a life-saving piece of medical equipment. It alleviates vomiting, reduces the pressure from digestion, and allows your insides to heal. To make it go down easier, you drink water until the tube is fully inserted.  The tube is connected to a machine that siphons off anything in your stomatch and intestines.

During one of these stays, the nurse took out the tube only to have to put it back in a day or two days later because they realized (somehow) that they had taken it out too soon. I mildly protested, but then I stopped. I knew it had to go back in if they said it did, and I knew that struggling would only make it worse so I didn’t. Instead, I drank the water.

When a child gets sick in modern times, the childrens’ ward is bright and cheery. Family and strangers alike come by wards to cheer children up. There is art work around. Professionals understand that it’s important to make a child feel as comfortable as possible in this strange and frightening environment. You can even sleep overnight with them, I hear. When I was in the hospital in 1979, there was none of that.

The room I was in was like a regular adult’s hospital room with three beds, TVs, and one large window. The walls were white as were the sheets. My parents were only allowed to be there during regular visiting hours. Between the two stays over a three week period, I was without family from 8pm to 8am, for the most part. As an adult, I understand you can’t have family there all the time, but that was what I wanted when I was eight.

I would call my mother at 5:30am every morning to find out what time she would come to visit me. The NG tube is uncomfortable and, like many things about a hospital stay, makes a good night’s sleep impossible. I slept little. I napped. I waited until I knew my parents were up anyway to call, just to hear my mom’s voice. Knowing she would be there at 8am or 10a or even 1pm broke up my seemingly neverending day and gave me some hope. I had a visit to look forward to.

I remember my mother often saying to me, “I wish there was something I could do”, with a kind of panic in her voice. All that did was instill and increase my own sense of panic at my situation. I felt that, if my parents were helpless, I was even moreso. I hated hearing it. I heard the helplessness and the pity in her voice at a time when I yearned for encouragement and hope instead. Somehow, my parents’ helplessness impacted my psyche more than the skill of the doctors’ abilities and skills to fix me, to save me.

After about a week, I went home. I was soon back because I had developed peritonitis from the infection that leaked into my body when the appendix burst. Back to the hospital for another surgery I went. Back with another NG tube. Back alone or mostly alone in a hospital room for an additional week at least.

In addition to the thin horiztonal appendectomy scar, I acquired a long, vertical scar extending from at least two inches above my belly button to my pelvic bone area. They braced my scar with four clamps held by a thicker kind of cord. Their removal didn’t hurt, but it felt very odd. I remember the scars between red and irritated after the stitches and clamps came out. Whereas I had loved two piece bathing suits, I refused to wear one for meany, many years.

After I got back to school, all I wanted was for my life to return to normal. If you act fine, people will think you are fine unless you tell them otherwise. I already liked school, and it was an easy and convenient way for me to distract myself from whatever I had been through and the feelings about illness that lingered. Studying and school helped me ignore whatever feelings I needed to acknowledge. Back then, it never occurred to anyone to have me talk to a therapist. It’s just not a thing that was done or talked about publicly. If I could go back and whisper an idea in my mother’s ear, it would be that one. I really could have used it at that time to help me deal with what I experienced. Just because I didn’t talk about it did not mean I wasn’t affected by it, even as the years went by.

By the time my appendicitis happened, I was already well-versed in being thought of and thinking of myself as “the sick child.”  Even when I was in good health, my mother would tell me not to push myself. This continues to this day. On a regular basis, I was told to stop, don’t pursh forward, stay home. For years, her admonitions would enrage me because what I heard was discouragement, over and over again, when all I have ever wanted is to be reassured by her, that everything was going to be OK, that I would be pull through. Instead, I learned to fear things that were both on the inside and on the outside.

I needed a lot of time and a lot of therapy to understand that her losses traumatized her. But, also, I think she houses some kind of internal belief that we have control over the bad things that happen to us. From my experience, that’s not always the case. I used to fight with her to get me to do even ordinary things, like going to the school dances. Now I wonder how much of it was her fear of what would happen to me when I wasn’t around her to call the ambulance.

As I grew up, I internalized this sense of struggling to prove that I can do it, make it, live it. One time, a professor asked me in mid-class, “What are you trying to prove?” I was confused by her answer then. It was only years later that I begun to make sense of it.

~~ End of Part 2~~

Continue to Illness, Alienation, and PTSD – Part 3.

Advertisements

Illness, Alienation, and PTSD – Part 1

This is a difficult topic for me. I don’t even know if I can do it justice. However, given recent events, I feel a need to discuss this. Friends and even family might not understand how significantly illness has impacted my life.

The impact of illness on my life began before I was born. A couple of years prio, 4-month old brother died unexpectedly from an undiagnosed enlarged heart. As you can imagine, my family was heartbroken and traumatized. When I had a febrile seizure at 11 months old, it felt like hell. They had to put me on ice – literally – to bring down the fever until I could get to the hospital. The febrile seizures recurred regularly, and I was put on phenobarbitol to control them until I was 12. The barbituates caused chronic constipation, and the number one result of chronic constipation is appendicitis.  I’ll talk more about this shortly.

Falling sick with colds and fevers and going to the doctors’ office were a significant part of my childhood, frequently disrupting plans. I remember my mother often seeming frantic. Any hint of anything other than perfect health, even a sneeze, was accompanied by her asking me in a worried tone, “I hope you’re not getting sick.” I dreaded and hated it when she asked me that question.

I began to touch my own forehead to check for fevers when I wasn’t feeling well. Her anxieties became my anxieties. I began to keep how I was really feeling to myself as long as possible because I could not stand to hear that panic in her voice. I learned how to pretend I was fine so I wouldn’t have to hear the fear and the pity in her voice.

In second grade, my appendix burst on an operating table. While they saved me, I developed peritonitis that required a second surgery. I was out of school for three weeks. I missed out on playing the part of Cinderella’s wicked stepmother, a part I much relished. Three years prior, I missed out on being Betsy Ross in our town’s bicentennial parade because of fever. By that time, I decided that it wasn’t worth it to put too much effort into going after my heart’s desires because I could fall ill at any time. I couldn’t stand the pain of the disappointment, so I decided regret was preferable to disappointment.

When I came back to class, I was given hand-made cards from my classmates, some of which I still have and are not in the best condition. I remember sitting at my desk again, surrounded by my classmates, who left tons of crayons on my desk so that I could participate. I was overwhelmed by the outpouring of support and love my classmates showed me.

At the same time, I felt like an alien from another galaxy with experiences that no one I knew, not family nor friends nor classmates, what I had been through and how scared and helpless I felt. These experiences cast a shadow of separation between me from other people. It influenced what I thought I could and wanted to do, how close I felt to others, and what I was willing to share. Even good experiences could not ease the hole that I felt inside; the one that said I was different, that I had suffered pain and loneliness, and that there was nothing no one in the world could do to change that.

~~ End of Part I~~

Continue with Illness, Alienation, and PTSD – Part 2.