TRIGGER WARNING: Lucky by Alice Sebold deals with the issues of rape, sexual assault, battery, trials, violence, sexual oppression, abandonment, and PTSD.
The surgery in 1992 that I had for an intestinal blockage was the last of my surgeries for intestinal blockages, but not the last of my intestine and stomach related issues. Since then, I seem to have experienced periods where my stomach seemed to be having intense gas pains that worsened in intensity. When that happens, I follow this protocol:
- Take GasX. If it’s actually gas, GasX works like a dream. Tums don’t cut it.
- Take Pepto Bismol. This helps with any stomach cramping. If one dose is not enough, repeat one hour later.
- In the meantime, get my heating pad out and lay it over my stomach.
Almost every time in the intervening 23 years, this has worked. Mark and I vaguely remember me going to the ER once, possibly in my late 20’s, for stomach pain that would not go away. But nothing serious was discovered because I did not have any further intubations with an NG tube nor any blockages discovered.
So it was with surprise when, on March 1st, I followed my protocol to find that it did not work at all. By the time 9pm came around, an intense pain gripped the right side of my abdomen. It seemed to start near my appendectomy surgical scar and go up to right under my rib cage. When it continued unabated for 30 minutes and I was crying out in pain, I asked Mark to call an ambulance.
I had tried to go to the bedroom, but the pain caused me to curl up in a ball. Any attempts to move my right leg away from my abdomen caused more pain. I was unable to sit straight up, to walk, or to do anything except lay there. I asked Mark to go let my mother know that I was having stomach pains and that we were going to call an ambulance. I was sweating because the only other time I ever felt pain like that was when I had intestinal blockages. I prepared myself for the worst.
I felt terrible for my mother to have be in the same room with me while I was crying out in pain. The pain was at a 10 level, and I could not keep it inside, even if I wanted to (and I wanted to). I knew it was just hitting her in the gut with helplessness and shared empathetic pains, so I told her to go downstairs so that she wouldn’t have to listen to me. She refused to leave until the EMTs were taking me to the hospital.
The one thing about my town that rocks is the speed of the EMTs, police, and fire department when someone is in need of an ambulance. We waited only a few minutes before someone was knocking on our door. I needed help just to get up off the floor and sit on the ottoman. To get me out of the apartment, they put me into a chair and then slid me onto a gurney to take me to Winthrop.
By the time I was being processed in the ER, my stomach started to feel a little better. They gave me some fluids while they had me drink contrast for a CT scan. The results came back showing that no blockages, but that there seemed to be a change in caliber to the intestinal in the mid transverse colon and constipation throughout the sigmoid, ascending colon, and cecum.
I found this odd, but I chalked it up to the smaller opening that they saw in the colon. Even though I had already passed soft stools that day, I felt a kind of straining that I can only chalk up to not having enough room for the intestines to breathe. It certainly wasn’t traditional constipation, and, after the enema, the attending nurse told me that it was odd that there were no hard pieces. I didn’t think it was odd if things could not move through easily enough on their own. I was relieved not to be in pain anymore and to be able to go home.
I was released with instructions to follow up with my primary care, take Miralax for the constipation, and go for a colonoscopy. I met with primary care and her GI specialist that week, but I did not care for his bedside manner. I also did not want to go to a Queens endoscopy center. I wanted to go to a hospital that I trusted.
That weekend, I talked it over with my sister M. She helped me research GI specialists and even came over to the house to visit and to work with me. The next day, I made the appointment with the GI for the following Monday. Once that was done, my sister M then helped me research for a new Winthrop-affiliated primary care doctor. I made an appointment with the new primary care the following Friday. She spent so much time with me, helping me research and select two new doctors, that I bought her a gift that will soon be delivered.
After my release from the ER, I continued to feel uncomfortable. I could feel and hear stool moving through my midtranverse colon. It sounded like things were being squeezed through a smaller opening. I ate small meals and stuck to a low residue diet, but even doing that made my stomach feel hard and uncomfortable. My stomach felt full all day long. I had periodic bouts of pain right under my ribcage. I decided to start taking the Miralax every day and eat a low residue diet. Things went on in this manner for almost two weeks until suddently I could eat normally with no discomfort or full stomach.
I’m still taking Miralax every day, but went down to half a dose a day because stools too loose are a problem in their own right. I’m also having weird twinges and bouts of pain in the area under my ribcage. But now I have to wait. After the appointment with the GI doc, I went to check out and make an appointment for the colonoscopy.
The scheduler first offered me the date of May 12th. May! I said to her, “I have to wait two months to get a colonoscopy? That’s insane!” She then looked again and offered me an April 29th date, which I took. Afterwards, I said to my sister M, “Well, now I know that no one ever has an emergency colonoscopy. You have to wait for that sucker!”
One positive that thing has occurred is that, for whatever reason, going to the ER motivated me a bit to move forward on my writing goals. It felt like a great stone had been moved from a closed entrance, allowing light to enter for the first time. Usually, an ER trip with significant pain like this would have me refusing to move forward on things that are anxiety-producing for me. Work is one of those things that causes a lot of hand-wringing on my part, but that’s a topic for a different series of posts. However, I was able to make a few changes.
I printed out an accountability calendar created by Carrie Brummer, creator and owner of ArtistThink.com. Carrie is an art educator and tries, through her site, articles, and free online classes, to encourage people to explore their creativity in different ways. I printed the calendar out, hung it up on my wall, picked and start date and began writing.and decided that I would start using it mark off the writing that I did. Every day. Across the top I wrote, “Don’t break the chain.” Jerry Seinfeld once told an aspiring comic to write every day and to not “break the chain.” Nothing feels better than checking off that little box and knowing that I am fulfilling my commitment to myself and my writing goals every day, even if it’s just a little bit.
Today is day 13 of that unbroken chain. As a result of recommitting myself to daily writing, I restarted the morning writing exercise that I learned from Julia Cameron’s book The Artist’s Way. She recommends writing three, 8.5″x11″ pages of freehand writing every morning. I found the three page minimum difficult when I tried it last year, so I decided to make it easy on myself and make it a one-page minimum. Yesterday, after spending a working day’s worth of time researching rheumatology docs for my mom, taking her to the appointment, helping her get xrays, bringing her home, filling her RX, getting milk, eating dinner, and coming home, I was exhausted. I could only manage that one page. I was surprised at the depth of what I wrote because, if you had asked me, I would have told you that any thinking at all would be out of the question.
On all the other days, I’ve managed to write that one-page minimum plus more. Sometimes it’s writing for my blog post. Sometimes it’s writing for my stories. Sometimes it’s writing down ideas that I have. WHATEVER it is, I am committed to writing and keeping the writing thing going. When I did that last year, I was so much happier. One day this week, I realized that I laughed and smiled more than I had been lately. I chalk it up to the writing practice. I feel productive.
My trip to the ER could have been paralyzing. For the first time ever, it wasn’t.
The best part of the summer before my junior year in college was getting to spend time at my brother-in-law’s summer house out East on Long Island. The cottage was your typical summer cottage. It had no internal plumbing; you took showers and went to the bathroom outside. Situated near a cliff, you had to climb down a ladder to get to the beach. The waves lapped a dozen yards away. I remember sitting on the beach, enjoying the warm weather, and spending time with my family shortly before I had to go back up to college in Massachusetts.
I did not return at the end of August 1991 as was planned because I was taken to the hospital with stomach pains that turned out to be another intestinal blockage. I remember the doctors saying that they did not want to operate on me if at all possible because it had only been 10 months since my last surgery. Instead, they inserted a nasal-gastrointestinal tube (NG) to see if it could relieve the pressure and, by proxy, the blockage. The NG tube did relieve the pressure and the blockage, and I was able to leave after proving that I could eat and pass things along my intestinal tract.
My joy at avoiding surgery was short-lived, however, and I was taken back to the hospital with stomach pains within a couple of days of going home. Again, the doctors did not want to operate, but they did insert the NG tube. Again, the pressure was relieved, the blockage unwound itself, and I was able to go home after proving I could eat and pass things along. Three weeks after my anticipated return date, I was able to go back to school. I had signed a lease with some college friends starting the prior July, and I returned to my apartment.
I wish I could say that this was the last of my intestinal blockage saga, but it was not to be. Six months later in March 1992, I went to the hospital with stomach pains. The pain of your intestines twisting around themselves is a pain unlike no other. I would never wish this on anyone, not even the worst of the worst. The surgeon who operated on me told me that the kind of pain I experienced is even worse than the pain of childbirth. I was also the youngest patient in the hospital with as many surgeries as I’d had by my age.
My sister M who used to cut hair got me the name of the surgeon through one of her clients, a doctor. The surgeon was the Chief of Surgery at Cambridge Hospital and performed surgery at Mt. Auburn Hospital. Although he has long since moved away, I still remember his cutting humor, his straight talk, and his lack of reassurance. He told me that, even if the surgery was successful, there was no way to guarantee that having a blockage would not happen again. It could happen the next day, in 20 years, or never. I was a wreck. How was I supposed to live my life this way? At any given time, what I had worked for could be taken away, and I could back in the hospital with another blockage and another surgery that would only leave adhesions, ensuring future problems. One of these days, someone is going to find a way to eliminate adhesions. When they do, I will tithe half of my income to them. HALF.
This surgery, like the one in 1990, resulted in my staying in the hospital for approximately three weeks. In addition to the NG tube, Dr. F wanted to perform a certain procedure wherein a weighted balloon tied onto the end of a tube was inserted up through the nose into the stomach. The balloon and tube were to pass through my intestines for a designated number of days until it had gone far enough into my body. During the surgery, Dr. F would arrange my intestines in such a way to minimize adhesions. This all supposedly would help with that since it seemed that adhesions from prior intestinal surgeries seems to the main cause of future intestinal blockages. After the surgery, the tube was cut at the very back of my mouth as far as they could go, and the tube was allowed to pass through in the usual way. I can honestly say that it is a very weird experience to go to the bathroom one day and have to pull a balloon and tube out of your ass.
In some ways, I was much better off than when I left the hospital in 1990. I did not have raging infections; my length of stay was due to the added procedure of the balloon tube that needed time to move through my system. In some ways, I was in a bad place. In my first semester at college, I went from 123 lbs. to 113 lbs. because the Aramark dining hall food was both disgusting and often improperly cooked. By the end of my first semester, I would only eat salad for dinner and then have a shake later that night when I was studying. By the time I was in the hospital this time in 1992, I continue losing weight. They inserted a feeding tube into my neck so that I would at least get nutrition. That didn’t stave off the weight loss, however. By the time I left, I was 100 lbs. I have never looked so ill. My thighs were barely much thicker than my thighs. I once again had to withdraw from college because there was no way I was going to be able to make up three missed weeks of school.
Earlier this year when thyroid medication helped me drop about 5 lbs. quickly, I began to panic. I called the prescribing doctor and told him I was worried about the rapid weight loss. He laughed at me and told me I was the first patient to ever call him to complain. I explained that I was not complaining, but that the rapid weight loss triggered memories of when I was in the hospital. I said, “What do I do? Eat more?”. He laughed and said yes, I can eat more.
After getting off the phone with him, I realized that I have had a fear of weighing too little because of these hospital experiences. I psychologically need to have some meat on me. At this weight of around 120 lbs., any added weight can be seen in the belly area – and I am totally fine with that. But having a ultra-lean body doesn’t really work with my psyche because I want to make sure I have some weight to fall back on if I ever get sick and can’t eat, which is what happened earlier this month. But I’ll talk about that in another post.
~~ End of Part 5 ~~
One Friday night near the end of October 1990, I treated my sophomore roomate Pam to dinner for her birthday. We went to a Thai restaurant down the street from our dorm. I remember sitting across from her in the restaurant. While we were at dinner, I started getting stomach pains, and we headed back to the dorm.
After a few hours of this, I went to the emergency room at Brigham & Women’s hospital in Boston. While I spoke to the attending, I speculated that it might be food poisoning as Pam and I had just been out to eat at a new place. He said, “You probably just have food poisoning. If it doesn’t get better, come back to the ER.” Several hours later, I wasn’t any better so back to their ER I went.
I remember being put in a hospital gown on a gurney by myself in a room. At some point, I began vomiting. And that’s how I spent the next 36 hours – alone, on a hospital gurney with severe stomach pains and unremittant vomiting. I am not sure how I got word to my family. I may have called or I may have asked my friends to call. Two close friends, Patty and Christy, came to see me briefly. I called Chris, the guy I had been seeing, and begged him to visit me, just so I wouldn’t have to be alone while I waited for either something to be done or my family to come join me.
At some point on Sunday, the ER staff finally decided to insert a nasal-gastrointestinal (NG) tube. Doing so alleviated both the vomiting and the stomach pain. I was admitted to the hospital, and my mother and sister Madeline came to Boston to stay while I was there.
By Monday, the pain came back. When the surgeons told us they wanted to operate on Thursday, the three of us collectively freaked out. My sister insisted that they operate sooner, and I was hysterical because I could not deal with being in excruciating pain for the next few days. The doctors caved, and I went into surgery on Tuesday or Wednesday.
This was a lifesaving move. Because of the delay in treatment, part of my small intestine had begun to turn gangrenous from the blockage. The surgeon told my mother and my sister that if they had waited another day to do the surgery, I would have died. This was not the first time my mother had to hear this from a doctor. After my appendectomy, my mother was told that I would have died my appendix had burst before they had gotten a chance to open me up.
I didn’t know about that when I was a child, but I learned about my appendectomy close shave after I had my surgery for this blockage. When you hear doctors say that kind of thing about you, you feel like you have barely missed being scraped on the edge of Death’s razor. I couldn’t get those words out of my head – It’s a miracle I lived. I could have died. I came so close. If only. If only. If only….
Because of the gangrene, I had an infection. The first antibiotics they gave me did not work, and a fever persisted. After about a week, they changed medications, and I was on the strongest dose of antibiotics they could give me. The medication worked, but it left me without any good intestinal flora, either. I became completely lactose intolerant. A pat of butter could send me into intense spasms of pain for years afterwards. I spent many years building up the good bacteria because I was not going to live without ice cream for the rest of my life, that much I could tell you. Or butter. Definitely. Needed. Butter.
I had one roommate during my three week stay in the hospital. My roommate, Mary, was in the hospital to have a colostomy bag installed. We spent many a days together, watching commercials on TV, and talking about food. You’ll never hear someone talk about food in such mouth-watering details as from the person who cannot have any. My mother marveled at how we could even stand to look at food, given that we couldn’t eat any. But it gave us something to talk about and to pass the time. Spending weeks in the hospital begins to feel like months. Years.
In both our cases, our tubes needed to come out, and we both needed to be able to eat food and keep it down. In Mary’s case, she also needed to be able to successfully use her bag while they watched to make sure no infections occurred. My mother and Mary exchanged Christmas cards for many years afterwards, even after I’d long put the stay and my roommate out of my mind.
As a teenager, I counted the years, months, weeks, and days until I could go away to college. My hospital stay seriously interfered with my plans to stay away. I was forced to withdraw from school because I knew I could never catch up after missing the practically the entire month of November away from school. The thoughts of having to go home indefinitely caused me to panic, and my dread of being pitied resurfaced along with my long-buried fears about my body, my health, my endurance, and my ability to support myself in life.
My aunt and uncle drove up to Boston to see me. My father brought them into my room. All I remember is that they either expressed through sighs and sounds or with words that I felt were like pity, and I became enraged. I screamed at them to get out, that I didn’t want to be pitied, and I didn’t want to see them if they were only going to make me feel worse. I already felt and looked awful, with my tubes, hospital gown, and fighting a raging infection. I felt guilty and humiliated and angry, and I cried from the sheer frustration of my situation. When I cry, my nose gets stuffed and runs like I have a cold. I wanted to hide under the covers and disappear.
I remember spending time in child’s pose while on my bed in the hopes that I could encourage the gas to move through my system and come out the right end. I learned that nothing compares to when your digestive system is working properly. It is the most amazing experience in the world because I know what it’s like when it doesn’t. Sometimes I forget. But then life finds a way of reminding me, like it did earlier this month. I ended up in the ER with stomach pains like I have not felt since my last intestinal blockage episode in 1992. But that’s for later.
As Thanksgiving approached, I asked about when I would be released. They were trying to decide when would be the right time, but I was determined to leave the hospital by Thanksgiving. The very idea of still being in the hospital on Thanksgiving, three weeks after I went to the ER, was unacceptable to state of mental health. There was simply nothing worse, to my mind, than being in a hospital on Thanksgiving. I simply was not going to have it.
Would they have let me go if I could not eat and poop? Of course not. I doubt they would have let me walk out of there. And I was lucky enough that I was able to leave the day before the holiday. But I didn’t go home. I fought with my sister about going home. I wanted to go back to my dorm to rest, and that’s what I ended up doing.
First, my mother and I went to the Registrar’s office at Boston University so I could withdraw for the semester. The day before Thanksgiving was technically the last day that I could have withdrawn without a financial penalty. However, after hearing what I’d been through, the staff member backdated my withdrawal form so that I could take incompletes on some classes and retake others the next semester.
So my mother and sister went back to NY, and I returned to live in my dorm. The school was not going to have time to kick me out of the dorm before the end of the semester arrived, and so, after the semester concluded, I went back home to New York to stay with my parents for the winter break.
~~ End of Part 4 ~~
Even though I liked my pediatricians, I feared the doctor’s office. I dreaded getting shots. Often, I was in the doctor’s office because of fever. I seem to remember getting a lot of them. I was also prone to terribly painful bladder infections. The getting undressed and into a robe. Feeling chilled and a bit scared while waiting for the nurse and doctor to examine me. I know readers know what I am talking about, but it’s the sheer frequency from recurrent illnesses and surgeries that had a profound affect on my sense of safety and strength in the world.
The two abdominal surgeries I had when I was eight years old occurred against the backdrop of my frequent visits to the pediatricians’ office. The fears of doctors and illness I already had became exacerbated by the extreme nature of the pain that led to my surgeries where I was necessarily and unwillingly separated from my family. The separation felt like abandonment, even though I knew they would have been with me if they could.
The chronic exposure to the vulnerability of nakedness, illness, excruciating stomach pains, and surgeries hits you hard in to the core of your being. I learned that I could never trust my body. I didn’t realize until much later that it also meant that I could not trust my self. I learned that could not trust that terrible things would never happen to me. I feared the future, and felt that safety is an illusion, even if I couldn’t explain it at that time.
I heard the words of comfort my mother uttered as pity, which I loathed. Somehow, I felt worse about my situation instead of better. I decided early to hide how I really felt until there really was no way I could hide it any more, just so I wouldn’t have to hear it – the sound of pity in her voice. I was terribly sensitive to the slightest change in tone in her voice, whether it be anger or anxiety. A pointed expression of fear could send me into an intense state of anxiety. I could hear her fear for my life, and I feared for my own life in response.
For decades afterwards, I had this intense desire to be physically near my friends and family at all times. I think this influenced the jealousies I felt towards friends when I saw them having what I saw as a closer relationship with each other than with me. I have no idea what they thought then. It probably isn’t true, and I didn’t ask. I wasn’t aware at the time of what drove me to have those jealous feelings.
Elizabeth Shue once appeared on the cover of Boston Magazine with the quote, “Vulnerability is my greatest strength.” But what about those of us for whom our vulnerability becomes tied in with our greatest weakness? In my case, it was my body and the feelings that I tried to bury as deeply as possible. How can I mine that vulnerability for art when it brings back the painful experiences that illness has put me through? My unwillingness to dig deep would have forced me to work through the bundle of repressed anxieties, fear, anger, and helplessness. I have worked on it with therapists over the years. But there are some things that cannot be forced.
Going back to school let me nestle myself into a routine where I could occupy my mind. But the intense anxieties I had lived barely under the surface. In one way, anxieties were ever present. In another, I tried to stuff them down deep inside and close them into a box with a lock. Ten thousand locks. My box had many leaks, and they could burst out in in fear and/or anger at any moment. An anger that was driven by a sense of helplessness and rage at the fate I had been dealt.
After my surgeries that I had when I was eight, I prayed to God and swore with all my heart that I would be a good girl if only He would keep me from ever having to go through that again. The promise became deeply embedded into my psyche. After a while, I no longer consciously remembered that promise. But there it was, subtly influencing my behavior for years to come.
~~ End Part 3 ~~
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.