Re-membering/Dis-membering

For as long as I can remember, my relationship to my body has been mediated by the media. As a child, I can remember watching television and looking up the maladies discussed in commercials (allergies, heartburn, yeast infections) in our family guide to medicine--in this way much of my knowledge about the body, especially illness, was mediated by visuals and text. When I was diagnosed with thyroid cancer in the spring of 2003, this mediation was taken to another level as medical technology and imaging isolated parts of my body for study and in this way led to a sort of fragmentation or dis-membering.

Even before my own illness and surgery, bodily wellness and illness were topics of discussion amongst my family members--who's sick, who's dying, who's getting better, how everyone's digestion has been. Nearly all of us have had major illnesses or surgery and time is often measured for us in relation to these events--the summer Sara had her thyroid out, the fall Bernie ruptured his Achilles tendon, the extended period of time during which Hoagy had no hair. I often wonder why we spend so much time thinking and talking about illness. Are we particularly sickly? Or particularly morbid?

As a result of personal concerns, I decided to begin collecting illness narratives from my family and friends. I was impressed by the response from people interested in contributing and began asking myself and others why we like to talk about illness so much. My mother posits that it's because people like to talk about themselves. My friend Ethan contends that it's because naming things gives us dominion over them. I think it's a little of both.

On a theoretical level (more akin to Ethan's thinking about pain) the genesis for this project emerged from a number of sources and questions.

Sources:

• Gregg Bordowitz' meditation on his colonoscopy "Present Tense," particularly through his discussion of becoming "witness to [his] body's history" as he watches footage of his intestines on a TV screen and his discussion of viewing one's body as a spectator.


• N. Katherine Hayles' discussion of flickering signifiers, particularly her suggestion that "the longer [a] chain of computer codes, the more radical the transformations that can be effected," which suggests a link between the shared language of informatics and genetics, vis-a-vis coding and mutation.


• Donna Haraway's Cyborg Manifesto discussion on the melting boundaries between humans and machines always makes me think of my mother's titanium knee or the pills that my dad takes with the label that essentially says: "IF YOU ARE A WOMAN, DO NOT COME WITHIN A 10 MILE RADIUS OF THIS MEDICATION."

Questions:

• What happens when the family tree becomes a web?
• What happens when I put my family (with whom I share a genetic code) into cyberspace (which requires that I "code" our narratives in html)?
• In what ways can this project be used to explore cyborg identity?
• In what ways can this project underscore and/or problematize the ways in which our relationship to our bodies are mediated by the media?
• How do people remember illness? What kinds of details do they focus on?
• What happens when I link my families stories about their bodies to images of other people's bodies available on the web?
• What do I make of this?

With that, I give you Re-membering Dis-membering.

*Processed Lives: Gender and Technology in Everyday Life. Eds. Jennifer Terry and Melodie Calvert. London and New York: Routledge, 1997. 103-105.

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Rupturing My Achilles Tendon

It was March of 1993 and I was standing on the tennis court at the Diplomat Hotel and Resort in Miami Beach where I was attending a professional conference. We were in the middle of a not so highly competitive doubles match, and I had just lunged forward (not unlike many similar moves I make every time I play) to return an opponent’s shot. All of a sudden I heard a pop, and I was on the ground. This being Don Johnson land and the home of Miami Vice (remember it was 13 years ago), I assumed I had been shot.

Of course, I hadn’t been shot, but I could not stand up. When my playing partner (now down to one since the match had ended prematurely and my opponents had lost interest) finally helped me up my foot was dangling and I could not put any weight on it.

The next stop was the hospital emergency room. After applying ice and sitting in the waiting room a young resident finally checked me out. No, I had not been shot; I in fact had a strained knee and was offered an awkward fitting semi cast and sent me on my way. In retrospect, it might have been better if I had been shot because at least the doctor would have been able to diagnose my injury. Not only did my knee not hurt but the half cast with an accompanying ace bandage was not providing adequate support and was extremely difficult to maneuver. In fact, as I discovered, three days later, I had a ruptured Achilles tendon (well below but close to my knee) which would require surgery. The good news, I guess, is that my knee was fine (?).

Three days later I found myself in surgery doing the proverbial count backwards from 10 to 1. I’ve often wondered why the anesthesiologist makes you count backwards. Since I only made it to 9.5 anyway, what difference would it have made if I started with 1. According to the surgeon the operation went well. It was easy for him to say, it wasn’t his leg. I spent the following 24 hours in a drug-induced stupor, of which I remember nothing, and then my wife drove me home.

For the next ten weeks I wore a thigh length cast. I continued with my painkillers for a good part of this time. Since the injury was to my left leg I was actually able to drive and I returned to work three days after the surgery. Although I thought I was fairly productive at work, in fact I was not. Months later colleagues would remind me of alleged conversations they had with me. To my credit I remembered participating in many of these conversations but had absolutely no recollections of what had been discussed.

Sleeping was fun. Waking up was not. I remember the quilt on the bed hurt my foot, so my wife devised a contraption to raise the sheet and blanket from the bed so they didn’t come into contact with my feet. It made the bed look a little like a tent. I always wanted to go camping. Now I could do this in the comfort of my own home.

I couldn’t get my cast wet, of course. As a result showers were an adventure. Initially I would sit on a chair in the shower with my bad leg dangling over the side. Over time I learned how to do this standing up, but several times ended up spread-eagled over the side of the tub. The cast remained dry, but I continued to find more ways to inflict intense pain upon myself.

As you might derive, I wasn’t the most fun to live with at this time. My wife and kids began to look for opportunities to avoid me and even the dog greeted me with looks of total contempt.

One day it was time to have the cast removed. I wasn’t ready but my doctor thought I was. He removed the cast using a saw. I thought surely he was going to amputate my leg. (He didn’t like me either.) The cast came off and then without uttering a word, the doctor walked out of the room where I languished for the next half hour. I could not stand up. I couldn’t move and I no longer had the use of my cast or my crutches. Thanks for all your help, Doc!

Ultimately, I learned to navigate with a cane and eventually I gave that up. Eventually, against everyone’s advice I began playing tennis again. No one dared to characterize this as a quick recovery. In fact I apparently established a modern record for most time in a cast for this kind of an injury. I celebrated and thanked my family by taking them by limo to see Phantom of the Opera. They deserved it. I didn’t.

Do I have advice for the reader? First, do not under any circumstances sustain this injury. If you do, have the surgery quickly and keep yourself well-medicated. Try to be good to your family even though the drugs may instruct you otherwise. They’re the only one you’ll ever have and they love you despite the fact that you’re an ogre.

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A New Knee and an Old People’s Home

Convalescent homes are places for old, sick, disoriented people. Don’t ever put me in one – don’t even think about it! Just take me out back and shoot me if it ever comes to that – at least that’s’ the way I felt before I had my knee replacement surgery in December of 2005.

When my surgeon told me I should plan on spending 3 to 4 days in the hospital and then 5 to 7 days at a convalescent home I immediately tried to envision alternatives. I considered returning home and arranging for therapists to come to the house. When I realized how hard it would be on my family (and on me), I grudgingly began to make plans to visit the local facilities.

On my first visit – which I made unannounced – I met a lovely young administrator who gladly showed me the patient rooms and common areas as well as the physical and occupational therapy rooms. She assured me she would do everything possible to secure a private room. She also said that I looked much too young to need a knee replacement. She flattered me, and it worked. I filled out the paper work and made a reservation.

Upon arriving at the convalescent home following my surgery and subsequent hospital stay of which I remember little thanks to my self controlled morphine drip, I found myself in a lovely private room overlooking the courtyard. I was immediately surrounded by doctors, nurses, therapists, social workers and the administrator whom I had previously met (obviously I looked like hell because she wasn’t sure I was the same woman who had visited six weeks earlier).

I remained there for 10 days, much longer than originally expected. The days were a blur – pain meds, occupational therapy, physical therapy, lunch, more pain meds, more physical therapy, nap, more pain meds, shower, dinner, and finally, pain meds and sleeping pills. My physical therapy went well, as I was cooperative and eager to get better. My occupational therapy was harder – they wanted me to practice making beds, folding laundry and doing dishes. I wasn’t interested and I let them know it. My occupational therapist persisted in finding activities for me to practice. We made chocolate milk shakes, played card games, and tossed a ball.

My days passed in a drugged stupor. I didn’t have to think about the outside world. There was always someone around telling me where to go, what to do, and how to do it. I had no responsibilities – no worries other than helping my new knee to work properly. I felt safe and well taken care of.

I wasn’t ready when my physiatrist walked in and told me I could go home the next day. He was sure I’d be thrilled. I was terrified – my safe haven was being removed. I cried at the thought of the outside world, which was overwhelming. I didn’t think I was ready. I couldn’t possibly leave – not ever!

But they sent me packing the next day (with lots of pain killers). My own home felt good. My own bed was wonderful. My incredible family took great care of me and I continued to improve. I realized I could survive outside of the convalescent home, and I gradually reentered the world.

The convalescent home experience was good. Everyone treated me great. I had made the right decision. I had given myself the time I needed to regain my strength. But, if anyone even thinks about sending me to a convalescent home just take me out back and shoot me instead!

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Kidney Stoned

I think that it happened my senior year of high school. I know that I already had my driver’s license, and that my brother was in high school at the time. On that morning in December, I woke up with an ache in my lower back. At first, I thought that I must have injured myself doing squats at the gym. I then remembered that I did not go to the gym, and would not do my first set of squats until I got to college.

Assuming that I had some sort of muscular injury, I tried stretching. This had no effect. I remember being puzzled, because I could not get any relief, no matter which position I assumed. The ache was the same when sitting, standing, or lying down. At that point, I popped a few Tylenol and got ready to drive to school. As I was walking out the door, I was hoping that the medicine would kick in soon, because the pain was becoming increasingly worse. My brother and I went out to my 1980 Chevy Citation and I started the motor. It actually started on the first try. I then remember sitting in the car, and feeling a wave of nausea as the pain became unbearable. I shut off the engine and went back in the house.

After making sure that my brother was not late for school, despite my dire illness, my mother drove me to the emergency room. The pain was becoming worse and worse. I had no clue as to what could be causing it. After what seemed to be hours, (but was probably much less) the doctor said that I had a kidney stone. He then gave me a shot in my backside. The effect was immediate. I remember remarking that you could do surgery on me and I would feel no pain.

I remained overnight in the hospital so that I could receive IV fluids to help flush out the stone, and also so I could get more of those shots. Thanks to the passage of time, and those wonderful injections, I do not remember much about my stay except that they put me in the pediatric ward where I was certainly the oldest patient. I also remember that, since it was the Christmas season, Santa came by to visit and cheer up us sick kids. He gave me a slinky.

The following day the doctor discharged me from the hospital. I think that stone passed shortly thereafter. The doctors opined that the stone was from excessive calcium in my diet. Fortunately, I have never suffered the same problem again.

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In Memoriam

When I was a puppy, my mother would tell my brothers and I stories of our family’s history; she knew we would soon be taken away from her, and made sure that we were aware of our heritage and responsibility as Chesapeake Bay Retrievers. We were an old line, going back to the mid-1800s, and were renowned for our ability to retrieve ducks (even if this task required the breaking of ice, a specialty of my great-grandfather) and guard the ducks when they were taken to market. Aside from our retrieving and swimming skills, we prided ourselves on our reddish-brown coats that kept us warm on winter hunts.

Which was why, when I moved to my third home, I was particularly excited when I saw that my new family lived near the bay—and one day, my master Bernie (who was really more of a friend than a master) put me on a leash and walked me to the bay for a swim. He had no gun, and there appeared to be no ducks in sight, but the smell of fish and clams and the rocky shoreline transported me back to the days of my parents and their parents before them in the Chesapeake. I ran to the water, drawn by these atavistic urges, and felt close to my [canine] family in a way I never had before. After a quick swim, however, I found myself cold and wet, and longed to be back at my house on the warm carpeting in front of the television. I felt like a bit of a disappointment, which was exacerbated by the earache I had when I woke up the next morning. Because my ears, like my coat, were so important to me as a dog—hearing the approach of ducks, rabbits, other dogs, humans—and the pain in my ear caused a marked interference with this ability—I felt entirely worthless. After a visit to the doctor, and some drops that Bernie put in my ears each morning, the pain went away.

This was my first failure as a dog, but my new family didn’t seem to mind. They loved me regardless and didn’t judge me based on this perceived inadequacy—that is, until I started to lose my coat.

Clumps of hair would fall out, getting stuck to the furniture with bits of dried skin on the ends. I was itchy all the time without my coat to mediate between my skin and the outside world, and developed welts and rashes on my skin. I hoped that no one would notice, and Bernie didn’t seem to. His daughters, however, looked at me with utter disgust, especially the older one. She wouldn’t pet me anymore (even though we weren’t particularly close before this malady, I still noticed this difference in our relationship). My diet changed. This was fortunate because I hated the dog food they fed me and looked forward to the scraps of food that would be dropped on the floor or that the girls would sneak me under the table or when their mother wasn’t looking. Now I got to eat people food—bananas in the morning and rice and ground beef in the evenings. It was repetitive, but when coupled with the scraps I accumulated over the course of the day (now more than before because my [human] family felt badly for me) I was relatively happy. But my coat continued to deplete.

I underwent an array of treatments. The first (and most peculiar of which) were baths in salts and muds from the Dead Sea. I didn’t quite understand the purpose of these baths, but the smell of the muds and salts reminded me of the bay and provided me a way of interacting with the smells of the bay without getting an earache.

After the muds and salt and bananas, I started to get allergy shots. The office where I would get the shots was horrifying and contained an array of animal smells that disoriented me and made feel even more gross that I already felt. The cats in the waiting room fascinated me. Despite the long animosity between my species and theirs, they seemed to have a preternatural sense of what awaited them beyond the doors of the waiting room and communicated it effectively to the other animals in the room. With their eyes they would tell us that while it might be scary but that it was for the best. They’d tell us that they too found the smells offensive. Their wisdom was impressive, and with the combined efforts of the cats and Bernie’s reassurance I began to enjoy my periodic visits to the office.

After a year of these treatments my coat was still gone. I had finally resolved that my coat would never come back and learned to disregard the scathing looks from the other dogs in the neighborhood and from the oldest girl in my family, when I was taken to a new doctor. This new doctor ran a series of tests (mostly involving needles) and after a few days, Bernie informed me that they had discovered why I had lost my hair—I was allergic to meat, grain, canola, chicken, duck, and an array of other things. How could I be allergic to duck? I couldn’t imagine a more shameful thing—actually, I could, because, after all, I had just lost my coat. With the help of a new vegetarian and fish based diet, my coat began to grow back and I was beautiful again.

My coat was back, and I finally felt like a retriever again (albeit one who was allergic to ducks and got ear infections from the bay). The girls and the other dogs in the neighborhood looked at me with pride and were envious of my superior locks. And occasionally, I still got to eat bananas for breakfast.

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Metabolizing Memory

Molly’s been complaining that this summer all her friends will be 21 and she will only be 20, which means that she will miss out on a summer of patronizing some of the Jersey Shore’s finest drinking establishments. In response to this complaint, I reminded her that the summer my friends were 21 and I was 20 I had thyroid cancer. I didn’t mean to make her feel badly, and this memory didn’t even make me feel badly or sad or traumatized—that was just how I remembered that summer, in a fog of medical imaging, surgery, recovery, radiation, and a triumphant return to Rutgers where a took a summer course on Tsarist Russia—and unlike my repeated failure in the medical tests to which I had been subjected over the past several months, I aced the final exam.

I’m not sure where the most effective place to begin my narrative is, but it seems logical to start in the spring of my junior year of college. I was taking 18 credits and in between massive amounts of reading and writing, I was playing lots of Dr. Mario on an old Nintendo one of my roommates had unearthed. As a result of playing Dr. Mario, taking seminars Kafka and on bodies in pain, and research for my senior thesis on the X-Men, I spent a lot of time thinking about illness and mutation—so when I started getting migraines I was convinced that I had a brain tumor and went home to see my physician.

My mother decided that since migraines were a grown-up malady that I should (for the first time) go to the grown-up doctor. I was dully impressed with him because he had an extensive knowledge of the history of comics in the 1960s, so we chatted about the X-Men and then he informed that I had a lump on my thyroid, which was totally normal, but which I should have checked out. He wrote me a prescription to get a thyroid scan, which I did the next time I went home for the weekend.

The thyroid scan revealed a cold nodule on my thyroid, and while I’m not sure what exactly that means I know it was bad and that it required me to get an ultrasound of my thyroid after which the radiologist curtly informed me that I probably had thyroid cancer and needed to get a biopsy. (It’s my understanding that radiologists are notoriously cold which is why they work with images rather than patients). A couple weeks later I went to see an Ear-Nose-and Throat doctor who took a biopsy but missed my thyroid entirely and didn’t get any readable tissue, so I had to get a second biopsy—this time at the hospital—a guided biopsy, guided by an ultrasound needle to ensure that they took the right tissue. This biopsy revealed that I had a tumor, but the lab technicians were unable to discern whether it was benign or malignant. They just knew that it had to be removed.

As I was going through all this testing, I don’t remember being particularly scared. One reason for this was that my mom, for the first time I can remember, was visibly frightened, so I felt the need to mask any anxiety I had to set a good example for her. Additionally, I sort of enjoyed becoming an object of study. Maybe I liked the attention, as pathological as that sounds. But mostly, I was fascinated by the way in which the tests and medical imaging made the mysterious inner workings of my body visible to me. For as long as I can remember, I’ve been fascinated by bodies. When I was 11, I prided myself on the fact that I had memorized the scientific names of all the bones in the human body and nearly all of the internal organs—nearly all of which I still remember to this day. So, here I was, finally seeing my own insides rather than those of anonymous people in medical and science texts. Somehow though, seeing my insides outside I always felt like it was someone else’s body I was looking at and that it was someone else who was sick.

Insofar as the actual thyroidectomy is concerned, I don’t remember much. As my parents would say (and do say in their narratives) I was in a “drug-induced stupor" for most of the experience. I remember that everyone came to visit me—my brothers, uncle, grandparents, and even the rabbi. I remember that the ENT shoved a tube up my nose to see if my vocal chords were damaged, and that this was the single most painful point in my entire surgery and recovery. I remember that my mom stayed with me in the hospital overnight and that we watched The Good, the Bad, and the Ugly and Batman Returns. I also remember eating Beef Wellington and thinking it was the most delicious thing I’d ever eaten—even though I hadn’t eaten red meat for eight years before that moment (with the exception of the occasional bite of brisket at holidays that I made my family vow never to tell anyone about).

Even after my thyroid was removed, the lab technicians could not discern whether my tumor was benign or malignant, so it had to be shipped to the Mayo Clinic in Rochester for further study—I would go on to joke that my move to Minnesota would be a reunion with my thyroid. The technicians at the Mayo Clinic found that it was in fact malignant, so I had to undergo radiation. They say that the radiation treatment for thyroid cancer is the easiest—all I had to do was swallow two radioactive iodine pills to kill any remaining thyroid cells in my body and prevent metastatis. The pills were in a lead capsule that looked like something from sci fi movie that would contain frozen alien body parts or something. My mom and the doctor laughed as I swallowed them like they were Tylenol rather than radioactive caplets that cost thousands of dollars (thank goodness for medical insurance).

For two days after the radiation, I had to flush the toilet three times each time I used it and no one was allowed to come within more than a foot of me (no hugs, at a time I really needed them). I also barfed up a combination of chocolate chip cookies, coke, and multi-grain bread. For a long time I couldn’t eat any of them. My then boyfriend bought me a pair of Incredible Hulk boxing gloves, because I, like Bruce Banner, was exposed to radiation—though his made him a superhero and mine made me an invalid. We were both, however, untouchable.

My life hasn’t changed significantly since all this went down. I have to take pills every morning and will for the rest of my life. I have a scar that people ask me about all the time. I hate when they say: “What happened to your neck!" but I like when they say, “Did you have a thyroidectomy? Me too—look at my scar!" or when they tell me I look tough. And it still seems like it was someone else’s body.

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Genes

I have never had to go to the hospital. My mom says that it is because I have the good genes in the family. But while I entertain this suggestion, others are quick to point out my near blindness, ovarian cysts and chronic ear infections. While I do not have the best genes in the family however, I do know the most about them.

My sister told me to write anything that I wanted about genetics. I told her this would be like if I told her to write anything she wanted about English—a task which she (being a massive dork) thought would be fun. She forgot that I hate genetics with the exception of the after class giggles about my professor’s camel toe. With only a shallow knowledge of genetics, everything is intuitive, but once I exited the realm of the Punnett Squares and Gregor Mendel I was introduced to intricacies of DNA that made it seem further from the logical explanation as the basic unit of life.

My biochemistry professor would disagree. He believes that DNA is “God’s word.� When I told Sara this, she cracked up, especially when I added that he carries the entire human genome on his keychain, and he has the genome of a famous bacteriophage programmed to music on his Palm Pilot with each nucleotide represented by a musical note (G,C,A,T—some other letter on the 8-note scale represents T). He plays this song to us as evidence of a pattern in the genetic code. I think it sounds nice.

When my professor first introduced this idea, a student in my class said, “All geniuses are crazy.� At first, I agreed with him, but soon it became clear to me that this was not at all different from how God speaks to Kabbalists through the Torah (remember the Darren Aronofsky’s Pi), and that the DNA that programs living organisms is very similar to the codes my sister will be using to put this paper onto her website.

The Tale of the Broken Heart(burn)

This is a story of lost love, and all those reading it are hereby warned to keep their tissue boxes ready as you share in my grief and my loss. It began a few years ago when I began experiencing frequent episodes of heartburn. At first I tried to ignore it, but that did not help. Then I went with over-the-counter antacids like TUMS or Rolaids. They would help somewhat for a time. However, as time went on my heartburn became more frequent and I went with some of the more powerful over-the-counter medications, like Pepcid and Zantac. These medicines also provided some temporary relief, but the heartburn would keep coming back. I also tried Prilosec, which takes 2-3 days to work. That actually helped after the 2-3 days. However, you are only supposed to take the Prilosec for two weeks and then stop taking it for several months. Only a day or two after I finished the Prilosec, all of my symptoms returned. Finally, I gave in and went to the doctor.

My primary doctor put me on a prescription medication that I was also supposed to only take for a couple of weeks (Nexium). He also decided to send me to a specialist to have an endoscopy done. An endoscopy is a procedure where they stick a tube with a camera on it down your throat and look around. I went to the specialist and got my endoscopy scheduled. I found out that they put you under anesthesia for the procedure and therefore I would need to take the entire day off of work to allow for the anesthesia to wear off.

On the day of the procedure, I arrived at the doctor's office and, as always with a doctor, sat around for what seemed like forever waiting for them to call me. Finally, I went into a changing room and had to lock up my belongings in a locker and put on a hospital gown. I then had to wait forever (again) until they finally came and got me and brought me into the procedure room. I lied down on the table and the anesthesiologist stuck a needle in my arm. The doctor then came over and started talking to me a bit when the next thing I realized was that I had woken up in a strange room not certain where I was. After a few seconds I remembered, and a woman came over and asked me if I wanted some cranberry juice to drink. After lying in the room for a few more minutes, I was brought to a waiting room and told to wait for the doctor so he could discuss my test results with me. I was a bit concerned at this point in time because the few other patients that I had seen there that day getting endoscopies before me had not, as far as I could tell, been brought to one of these waiting rooms afterwards.

When the doctor finally came in, he told me that the endoscopy had revealed that I had a hiatal hernia (which means that the area where my esophagus meets my stomach does not close properly and allows stomach acid to come back up) and that I had a condition known as Barrett's Esophagus. This is a condition that normally does not show up in someone my age. What it means is that the acid from my stomach that came into my esophagus changed the lining of the esophagus permanently. This condition does not directly cause any problems and can be lived with. However, it does give you an increased chance of developing esophageal cancer, which would require some rather scary surgery to get rid of. The doctor told me that there were three things I would have to do because of this condition. First, I would have to take Nexium every day for the rest of my life. Second, I would need to get a repeat endoscopy every 3-5 years to make certain that I did not get worse and did not develop any cancer. Finally, I would have to change my eating habits.

The eating habits that I was required to change were pretty extreme for me. I could no longer drink coffee or tea. I could no longer drink any carbonated beverages. I could not eat chocolate. I could not eat tomatoes, onions, peppers, or garlic. I could not have any fried foods. I started the changes almost immediately, including cutting out the coffee and the carbonated beverages. This meant that I had to cut out caffeine entirely. I discovered in the two weeks of caffeine withdrawal that I suffered that caffeine is a very addictive substance. The withdrawal I went through was fairly painful, with intense headaches and feeling extremely tired. However, once my body was purged of the caffeine and a few weeks had passed, I actually discovered that I had as much energy as I did when drinking caffeine regularly. I was no longer dependent on it and my body compensated and found the energy elsewhere.

I said at the beginning of this story that this is a tale of lost love. It is. Before I was diagnosed with Barrett's, I would go at least once a week during the summer (when they were open) to a local restaurant called The Clam Bar and have one of my favorite meals in the entire world. Fried clams, french fries, coleslaw, and a birch beer. Other than the coleslaw, I cannot have any of that any more. I lost one of the meals that I loved most in the world, and I am not supposed to ever eat it again (though I do confess I may have to cheat once in a while and order the clams anyhow!). You may now use your tissues to wipe your tears away.

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Emergency Room Trouble
(as told to the narrator's mother)

Well, my story begins when Grandma DiDi was babysitting me. The thing was
that I couldn't breathe too well. My mom and dad got home, they tucked me
into bed, and I told them I had to go to the emergency room, so they took
me, and I needed to breathe asthma.

All I saw was a cart. I was riding in a carton. I got a dragon mask. I went home.

I saw some doctors. I saw some nurses.

I felt really sick. I was scared. I don't know what I was scared of[?]

Could you put a question mark at the end of that last sentence?

Okay, that's enough about the emergency room.

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Luke’s Traumatic Injury Narrative

The conventional wisdom in pitching says that if you hang a changeup, get ready to turn around and watch it leave the yard. I would make a slight amendment: if you hang a changeup, get ready for a lifetime of driver’s license restrictions and some really awful prom pictures. I was throwing a no-hitter through five and a third against Charles City’s Babe Ruth team in a meaningless pre-season game my senior year of high school in what is, statistically, the safest activity in amateur athletics. My curveball was especially sharp because of a light April humidity, and I was locating my fastball better than usual, so the need for changeups was slight. One particular changeup, though, instead of tailing knee-high down and away, sailed belt-high down the center of the plate to one of the team’s more average batters, and he crushed it back at me at an estimated one hundred and twenty five miles per hour. If you imagine the eye as a series of concentric circles, with the pupil as center and the orbital bones surrounding it as the outermost ring, then the ball hit a perfect bulls-eye. I like to think of it as the eye as a crosswalk button on the side of a stoplight pressed violently by some really thick fingers, probably akin to those of my father. In either case, I fell to my knees without losing consciousness and broke the by-now-awkward silence with a steady string of loudly-projected profanity, trying desperately to staunch the blood spilling out of my eye socket. The ambulance arrived shortly after.

One twelve ounce Minute Maid apple juice: $1.49. The cost of John Deere health insurance: $400 a month. The low murmurings punctuating the silence of a small-town Iowa county hospital signifying confusion over what to do to stop a profusely bleeding eye socket: priceless. When one is ill every bodily sensation seems to take on a certain value relative to others. The pain from the two-inch gash beneath my eyebrow or the one-inch cut on my eyelid was minimal compared to the desperate agony coinciding with the nausea arising from shock. The first two retches went smoothly enough since they consisted of the apple juice which I drank ritualistically before every game. It was the next dozen or so over the course of four or five hours that made me realize the amount of pressure exerted on the eyes during vomiting, which in this case was intensified exponentially. After an indeterminate amount of time lying on a bed in the hospital room, the wound below my eyebrow was stitched, and it was decided that the best course would be to transfer me back to Waterloo to be treated at a better-prepared facility.

My conversation with the medical technician in the back of the ambulance seems to have consisted entirely in non-sequiturs, involving questions like “Do your teeth hurt?� and a fumbling, but well-intentioned, anecdote from her about a cousin who got hit in the crotch with a softball bat once. At the end of the 45-minute ride there was a quarter-sized raw patch of skin on my left cheekbone where she continually wiped away the stream of blood that still ran from my lower eyelid.

While waiting in the hospital room for an eye specialist, I was witness to a painful scene in which my tear-stained mother informed a septuagenarian eye doctor, whose hands evinced a noticeable tremor, that she would prefer to wait for Dr. Mauer, a younger specialist who was especially well-regarded in the community. My half-sight was enough to notice his pained look of diminished ability as he gently tried to persuade my stubbornly protective mother before recognizing the futility of the effort, sighing, and shuffling slowly out of the room. Dr. Mauer arrived in what were clearly his golf clothes minutes later, his speech marked by a raised pitch in the last syllable of every sentence, drawn out to unnatural lengths. With his index finger and thumb placed on my upper and lower eyelids, respectively, he quickly separated the congealed seal of dried tears and blood and looked at the back of my eye with some sort of monocular device. After examining it for two minutes, and between my attempts to empty my stomach, he prepared a small syringe with perhaps a one inch needle, proceeding to inject it into the soft pink tissue which surrounds the eyeball. The pain was the most excruciating I had ever felt, or am ever likely to feel; it made my retches seem like sneezes. Ironically, it was anesthesia for the eventual stitching of my eyelid, which I am happy not to remember the details of (and which I pulled out days later because they were too itchy). The end product of the injury is a significant amount of scar tissue on my retina, resulting in a permanent Pacman-shaped blind spot at the center of my left field of vision. A surgeon later reconstructed the lower orbital bone with a combination of special gauze and plastic and a small steel pin holds the top of my nose in place.

Posted by Sara Cohen at 5:36 PM | Permalink | Comments (0) | TrackBacks (0)

It Sucks to be that Guy

It was some years ago, after I had been fired from my first job, that I had my first real hospital experience. No, getting fired didn’t put me in the hospital. It was a quite bizarre circumstance. I believe the month was September, or maybe late August. I’m not sure. Anyway, I had gone to get a mole removed from my chest – just a simple procedure. And the procedure went perfectly well, actually. But on the way home, I felt really weird. Thank goodness my mom was driving, because otherwise, I would have ended up crashing. What happened was, I had what a neurologist later called a “convulsive faint�. Not necessarily a seizure, although at the time I thought that’s what it was. It only happened for a second, but my mom was freaking out. I just remember swooning, like I was really tired, and I could hear muffled sounds, so I hadn’t completely blacked out. I could hear my mom calling my name, then I snapped out of it, and felt slightly nauseous. But I didn’t puke.

So now the next step was to go to the hospital. My mom drove out to ACMC (Atlantic City Medical Center), and after waiting for some time, we went in. I was more nervous about the hospital than having another attack. I had to put on that blue smock thing, and they took me in a room. They did blood work, and an MRI, and all this other weird stuff. I waited in the room for the results to come back. I was reading a magazine, when I overheard a conversation between my roommate and a doctor on the other side of the partition that separated us. The man was complaining of stomach pains and a bleeding rectum. The doctor said the only way to tell for certain was that he’d have to stick his finger ‘up there’ to be sure. I tried hard not to burst out laughing, and at the same time, felt sorry for the poor bastard. He didn’t want to be violated, and he kept begging and pleading. I remember him distinctly saying, “Isn’t there anything else you can do?� This guy was doing anything to talk the doctor out of sticking his finger up his ass.

The doctor reluctantly said there was nothing else he could do. Time seemed to stop for the next few minutes. I heard the stinging slap as the doctor put on a rubber glove. Then came the dreaded words.

Then there was a loud sigh from the poor bastard as the doctor shoved his way in. It was the sigh of a man who’s thinking: “God get this over with� at the same time. It wasn’t a ‘Brokeback Mountain’ sigh. It was also the sigh of a man who’s thinking: “I’ll never live this down. My buddies are gonna tease the crap outta me.�

Meanwhile, I’m covering my mouth with the magazine and laughing silently to myself. It was over quick, and the doctor’s diagnosis was: “You have colitis.�

I was soon spirited out of the hospital with a seizure diagnosis. It turns out later that it was just a convulsive faint, which is normal, according to the neurologist. I hope to God I never have colitis.

Posted by Sara Cohen at 5:39 PM | Permalink | Comments (0) | TrackBacks (0)

Finding out your child is born with a birth defect is one of the hardest things anyone can imagine going through .

When I got pregnant with my third child, I was happy. Everything was going great for myself and my unborn baby. Until the day I found out he was going to be born with a birth defect. I was about five months pregnant and had a normal ultrasound done when my doctor said she wanted to send me for a stage 2 ultrasound. She thought she saw something on my baby and wanted a better look. At first I thought there couldn't possibly be something wrong with him because I had two children prior that were fine. So as always, I went on with my normal activities until the day I had my stage 2 ultrasound done.

The doctor began to check the baby. And told me the baby was doing great and developing well. He told me the heart was fine and he was a good size. I was so happy with the good news and was thinking to myself, "I knew nothing was wrong with my baby!" Then the doctor said to me, "your baby is doing fine and is growing at a normal rate but we found a problem." I looked at the doctor and asked him what it was and if my baby would be ok? The doctor showed me the baby on the screen and said he would be born with a birth defect called the cleft. He began to tell me that he will have the complete bi-lateral cleft lip and cleft palate on the left side of his face. I had no idea what he was saying. I began asking the questions that any parent would ask. "what is that?" and "is he going to be ok?" The doctor insured me that everything was going to be fine. He would need surgery to correct the problem when he gets older. At that point I was crying and wondering how this could have happened to my baby. The doctor told me that everything would be fine and that my child would be like any other child. He could do what anyone else could do.

When I was done I went to the car where my mom had been waiting for me with my other two children. She asked me what was wrong because I was still crying. I told her that the baby was going to be born with the cleft. She asked me what that was and I explained to her what the doctor had told me.

Time went by and on Thanksgiving Day, November 26,1998 just as we were about to sit and eat dinner with the family, my water broke. We rushed to the hospital. About 5 ½ hours later I had my son. The doctor got him all cleaned and prepped for me to see him. I looked at him in shock because I had never seen anything like that before and didn't know what to do. (as if I was afraid of him or something.) the doctor wanted to see if he was able to eat because some babies born with the cleft cant suck on the bottle. The nurse showed me how to feed him and he was drinking as if he never has anything wrong with him. So they allowed him to go home in three days. That was the start of a long rough road ahead.

We named him Thomas because he was born on Thanksgiving, he got the nickname “Tom Turkey.� Everyone was so happy to see him when he got home. I was afraid they wanted to see what he was born with, so I got upset. I realized they were there to see him and not his cleft. They were looking past the hole in his face and looking at him as if he was perfect like any other baby. I realized it was just me.

Tommy was home and doing well when all of a sudden he was drinking water and stopped breathing. I yelled to my mom, who was in the other room, that he was turning blue. She came running in the room and took him out of my arms and told me to call 911. By the time I got off the phone with them, the emergency team was at my door and he was breathing again. they took him to the ambulance and went to the hospital. When I got there they did all these tests on him and said he had a mucus plug. When I was feeding water, it loosened up and got lodged causing him to stop breathing. They told me thatif it wasn't for my mom doing what she did, he wouldn't be here today. We went home that same day and Tommy was doing well.

Then the horror started again! Tommy was now 2 months old and went back to the hospital in the NICU for failure to thrive. This meant he was unable to eat. He had forgotten how to suck on his bottle which caused him to lose to much weight. He was there for one week and we had to learn how to feed him all over again. he gained weight and was sent home again. we went to the doctor for a follow-up and they told me he was at the right size and weight to get his lip repaired.

Four days later we were back at the hospital getting surgery to repair his lip. When it was done they came to get me out of the waiting room to see him. He didn't look like the same baby I had brought there. His face was swollen, and he had wires on him. I was scared for him. I didn't know what to do because all he would so was cry because he was in so much pain. He stayed in the recovery room overnight and came home the next day. it was hard to take care of him when he came home because there was a lot that had to be done. I also had two small children to take car of too. Tommy was doing well so the doctor told me he could get his palate repaired soon.

At 9 months old he went in to have that done. By now I had become a pro at taking care of all this. He has been going to the doctor once a year so they can look at his progress. He has to see about five different doctors when he goes there. He has to take speech therapy. Children with the cleft usually have hyper nasal so they talk through their nose instead of their mouth. Therapy improves his speech and teaches him how to talk through his mouth.

Tommy is now 6 ½ years old and has come a long way with his surgeries and therapy.He will be getting bone grafts to repair the bone that is missing in him mouth so his teeth will grow in better. Then he will need braces. His lip looks good but he has some scare tissue that the doctor wants to do touch up work to make him look better. He knows what he had when he was born because we have a picture of him. He used to ask questions about it. When someone asks him what he was born with, he tells then and seems happy about it. The only downfall is he doesn't like to go to the doctor all the time because he doesn't like them touching his lip. I tell him he has to go until he's 18 because he's living with me and I wont let him miss an appointment.

Tommy loves to do all kind of things. He wants to play football but I'm afraid that if he does and gets hit in the face, it will do damage to him, he doesn't understand that yet. He loves to work on cars with his dad and says he's going to drive a race car when he gets older. He enjoys watching races on TV and wants to be like Dale Earnhardt. Hopefully his dream will come true.

Posted by Sara Cohen at 5:41 PM | Permalink | Comments (1) | TrackBacks (0)

The following is an appeal letter written by my grandfather to his insurance company after he was rushed to the hospital, nearly bleeding to death.

On the 4th of July, I went to the Emergency Room at St. Peters Hospital by ambulance after we called 911. I was so weak, I couldn’t walk. Someone in ER called Dr. O—. He was on vacation. Covering for him was urologist Dr. R—. He arrived at the ER and started to work to stop the blood. He spent several hours with an attendant. They stopped the bleeding. They took my pressure and ordered me into the hospital from the ER. My hemo at that time was 4.2. They ordered two units of blood. Then two more units of blood. By Tuesday morning I had received 4 units of blood, by Tuesday I would have been gone.

My PCP [primary care physician] wanted me to go to his office on Tuesday. My wife called his office on Sunday, July 3. He told my wife his office was closed until Tuesday and he would see me on Tuesday.

While at the hospital, they called in an infectious disease control doctor, the endocrinologist, Dr. G—. He also ordered more blood to bring my hemo to at least 9. He prescribed medicine I was to get. I didn’t ask who was a provider. I accepted what they sent me. When I was discharged several days later, Dr. G— wanted to check me out. While I was in his office, I was informed that he was not a provider for my insurance. The team of doctors that was put together all worked hard to save my life.

I have called for a provider directory. To date, no directory. A big secret on the part of my health insurance provider.

My PCP, Dr. M— visit was July 4th. Before that, I called a medicine marketing representative. He recommended Dr. Q—. I called his office and was told the next available appointment would be in the middle of September, but she told me to get a PCP before that in case I have a problem where I might need one.

I know you rejected Dr. G—’s bill because of no referral. How was I to get one? If you don’t pay him, I will make arrangements to pay him. He was in the hospital every day to make sure I was doing all right. Also, Dr. R— was there every day. I am alive today because of these two doctors.

God bless them both.

My grandfather's claim was approved by his insurance company on November 3, 2005.

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Straitjacket

The first time I was in straitjacket, I was only three. Or maybe four. Strictly speaking, I’ve only ever been placed in a straitjacket once, as far as I can remember.

The house my family was living in at the time was a contemporary style with an open living room and dinning room. However, between the two rooms was a single, long stair. The surfaces were all hardwood flooring. Very hardwood. For reasons I cannot quite recall, the specific circumstances having been lost to my memory over time, I wound up falling face forward into this single stair, landing directly on my chin.

Apparently, there was quite a bit of blood. If these events were to be produced for a major motion picture, the very next scene would be me waking up in the hospital. At least, that is how I remember it all, the events between the fall and the hospital erased by shock and adrenaline. But unlike a motion picture, when the victim wakes up in a strange hospital room, my consciences returned a few minutes before receiving stitches.

There wasn’t much to remember except a few folks busying themselves around me, dressed in the uniform of medical technicians. There was of course a great deal of pain, and being three or four or perhaps even two, I wasn’t quite aware that these frightening people in their sanitizing masks were there to help me. As far as I was concerned, they were as much responsible for inducing pain as anything else. So I did my best to fight them off, flailing my arms about to keep them at a safe distance in the same manner primitive man might have fought off an attack by some extinct species of wildlife. Enter the straitjacket.

For the protection of the medical technicians, and probably for my own safety as well, I was wrapped in the straight jacket. This memory is very clear, even though nothing else is. Years later, I still have little recollection of any part of the experience, the gaps being filled in by other participants, with the exception of the restraining device that engulfed me. The scar under my chin has long since dissipated, and the only physical evidence is the lack of facial hair on a small patch of skin.

Posted by Sara Cohen at 10:53 PM | Permalink | Comments (0) | TrackBacks (0)