Looking like a five- or six-year-old when you’re twelve causes big problems in middle school. When you add to that the fact that the most popular girl in class, Natasha, got a hold of classified information that you spent a week and a half on a children’s psychiatric unit in fifth grade, that’s raising the problem level even higher. If you started sixth grade with a tube coming out of your nose to feed you because there’s something wrong with your stomach, that right there is strike three. It’s game over if you know all the answers to the teacher’s questions and usurp Natasha’s position as the “smartest kid in class.”
The year before, I finished sixth grade early because the teasing and bullying got too brutal for me. I was way ahead academically (despite a developmental delay in other areas) and could have easily skipped a grade or two if the school looked at things from a purely academic standpoint, so the plan was for me to restart with a new clean slate in September of seventh grade after everyone had a chance to mellow out.
The fresh start to seventh grade wasn’t as fresh or pleasant as we planned. We ended up hitting some major potholes.
Over the summer the Reglan, that I had been taking to help ease the symptoms of the gastroparesis, didn’t seem to be working as well.
Since we had moved to Massachusetts, Dr. Sampson, my pediatric GI doctor saw me once a month. Her dietitian, Liz, saw me after every visit. The two of them had put me on a gastroparesis diet that was particularly tailored to my needs. I could tolerate pretty much no fiber. There were absolutely no raw fruits or vegetables that I could eat, and most dairy products were problems. I had always been vegetarian.
Soft high caloric, easily digestible foods were preferable. We were big on liquid nutrition. I tried to drink two 8-ounce Pediasures a day and three 8-ounce cups of Pedialytes a day as well. I was supposed to eat 6 to 7 times a day instead of just three big meals.
So, when my family sat down for dinner, I couldn’t eat a full meal with them. It would usually be something like two or three tablespoonfuls of mashed potatoes or noodles with butter, an 8-ounce bottle of Pediasure, or an 8-ounce cup of Pedialyte and then a few hours later repeat.
Despite the carefully engineered gastroparesis diet, the summer before seventh grade I had started bloating up so badly after consuming so little that I looked something like a pregnant six-year-old.
Then the vomiting started back up, along with nausea and pain with eating and drinking. It was like deja vu. My parents started to get stressed out and, in their stress, forgot that I could be physically ill. They figured that with everything Dr. Sampson and Liz spoke about during appointments when it came to gastroparesis that the treatment was medication and diet. If I was getting those treatments and still having symptoms, then my problems must be psychological. They were subconsciously blocking out the parts of the conversations we’d had and the articles they’d been given that explained that gastroparesis is a chronic incurable illness. As in “there are no curative treatments for it.” Some people’s symptoms can be managed on a day-to-day basis with diet and medication, but there is no cure.
Many people with gastroparesis aren’t helped by any of the treatments. Many people require either NJ tubes or surgically placed tubes that go through the abdominal wall into the stomach or intestines. Some people can’t even tolerate any nutrition through the gastrointestinal tract and have to have central lines placed for intravenous nutrition known as TPN.
The only time gastroparesis ever gets better is if it was caused by a virus. In that case, it resolves within a year or two. Dr. Sampson and the doctors at the hospital had all explained to my parents that since I’d had gastroparesis since I was eight, this was not the type of gastroparesis we were dealing with.
Besides viral gastroparesis, all other forms of gastroparesis either stay the same, wax and wane, or get worse. There is no cure. It causes severe medical problems and complications. In some cases, it’s deadly.
My dad kept telling me that his psychiatrist told him that there is no disease that prevents you from holding down liquids. Well then tell me what gastroparesis does? Also tell me, since when do psychiatrists specialize in the GI tract?
In the midst of a gastroparesis-invoked storm at home, I began seventh grade. I would constantly have to leave the classroom to throw up the Pedialyte and Pediasure that my mom packed for me and I tried to sip on throughout the day but couldn’t hold down.
One day in October I saw the note on David’s desk with my name in it, in Natasha’s writing. As we were leaving for our next class, I made the mistake of reading it.
“So, I guess our little mental patient, Becca, has picked up a new eating disorder. How’s bulimia for a change? Now she’s making herself throw up too. Have you seen how many times she goes to the bathroom? She even smells like vomit…Super gross-out…Ewww!!“
That was the last straw. It all piled up on me in my heart so heavily that it was like my chest was full of a thick tarry sludge. It was just too many problems at once…Natasha thinking I’m bulimic, my parents thinking the gastroparesis was just all in my head. Constant nausea, pain, extreme fatigue, and killer headaches. Not knowing if things would ever even get better.
They had explained that they didn’t know what had caused my particular case of gastroparesis so they didn’t know if it would alternate between getting better and worse on and off throughout my whole life, just keep getting worse, or stay the same. After the Reglan had stopped working, they tried me on two other medicines to make my stomach speed up its digestion and make me feel better. Neither worked. The drugs out there designed to treat gastroparesis are extremely limited and they have their major problems like dangerous heart issues, causing lactation, and causing tics and irreversible movement disorders.
As I stood there staring at that note. Right there, right in that very moment, it was like everything that had been happening to me starting from when I was eight years old and was struggling to stay standing during prayer services, until when I started to not be able to eat lunch, until I had to quit gymnastics, until when I was first rushed to the hospital after passing out in an elevator, until when I was locked in a padded room and had all my clothing and possessions taken away from me, until when I had a tube shoved through my nose down into my stomach and was force-fed formula that made me feel so sick and put me in so much pain, until my bowel obstruction, perforation, surgery, and painful recovery requiring weeks of IV antibiotics through a PICC line in my arm, until my diagnosis with a severe chronic illness with no cure, until my bullying all through sixth grade, it was all gushing out of me in a meltdown of hysterical tears that refused to be tamed.
I went running for the guidance counselor’s office with a ridiculous hope that no one saw the loud sobbing mess of me on the way there. I was in such hysterics for over an hour that the counselor didn’t know what to do with me, especially because I had started tearing out handfuls of my hair because I felt so out of control inside and didn’t know what to do with myself except to be violent and cause pain on the outside to match the pain on the inside
The counselor ended up calling my mom. I just had too many severe mental and physical health problems for her to feel comfortable dealing with me on her own as a run-of-the-mill middle school counselor
When my mom was unable to talk me out of the hysterical state I was in she gently put her arm around me.
“Here Becca,” she said. “Let’s leave the school. We’re going to get you out of here.” I was extremely happy to get away from that building and all its problems, so I let her soothing touch guide me out of the building and into the car.
I wanted to stop crying, I wanted to calm down, but it was like someone had pulled the “distraught switch” on me and I just couldn’t turn it off. So, when my mom told me she was bringing me to talk to a counselor at the crisis center I didn’t even argue. I knew I needed help. Someone needed to assist me in finding the off button for the “distraught attack”.
We checked in at the crisis center and a heavyset woman with ironed straight long brown hair in a ponytail with a red scrunchy that matched her red, yellow, and black striped sweater came out and asked me my name and offered me some Kleenex.
“You seem pretty upset. Can you tell me what some of the problems that brought you here today are?’ she asked me in a calm, evenly modulated tone.
“I have this crappy disease where I throw up every time I try to eat something. Sometimes after I try to drink stuff too. My stomach hurts, all the time. I want to be able to eat so badly. I’m sick of having trouble with my stomach. I’m on medicine for it and following the special diet for it exactly like Dr. Sampson my GI doctor told me to, but it’s not working. I just got my feeding tube taken out last February. I don’t want another one. The worst part is my parents think it’s all in my head. At school, the kids think I’m some sort of psycho with an eating disorder that makes herself throw up.
The kids at school write these notes about me, and they go through all the middle school classrooms and then I find them in the trash. When I walk into homeroom it gets all quiet for a second and then the whispering and giggles start up again. I walk by other kids and I hear words like ‘mental patient’, ‘anorexic’, ‘bulimic’, get whispered.
I do see a therapist, I did spend time in a psychiatric unit, but I’m not crazy and I’m certainly not anorexic or bulimic. I’m tired of trying to prove that to people and I can’t handle it all anymore.”
All the words sort of just gushed out of my mouth through my tears, but the counselor heard me.
“It sounds like you’ve got a lot going on,” she said.
I just nodded.
“Do you feel like hurting yourself?” she asked me.
“I don’t want to hurt myself,” I explained to her. “I just want to go home, curl up in bed and never leave again.”
After we talked for a while, she wanted to talk to my mom separately. I wasn’t sure how I felt about that. I love my mom and dad. Even though my mom is among the people I love most in the world, she doesn’t always totally understand me, and she’s made grave mistakes that have deeply hurt me when it’s come to my healthcare.
My mom is the one who put me in that awful children’s psych unit.
However, I was also only twelve years old and in a psychiatric crisis, so the counselor pulled my mom into a room separately and left me sitting with a blonde, bucked-toothed receptionist and a cone-shaped paper cup of spring water.
The room I was in was small with no windows but bamboo shades. There were spider plants hanging up in the corners and cream-colored walls. One wall had a bulletin board on it with nothing pinned on it. Instead, fliers were taped on with thin pieces of gray duct tape so that the suicidal patients couldn’t hurt themselves with pushpins.
The receptionist watched me struggle to stop crying as I attempted to compose myself while playing Tetris on my TI-84 calculator meant for doing my math homework. She was absent-mindedly flipping through People magazine and chewing gum. What was it with all receptionists chewing gum?
Finally, after what seemed like moments frozen in eternity, my mom and the counselor came back for me and brought me back to the meeting room with them.
“We think you’re struggling with a lot of Post-Traumatic Stress Disorder symptoms or PTSD after your sexual abuse and what happened to you at the psychiatric hospital. Your mom explained to me how you had that terrible reaction to the Klonopin and what an awful emotional and physical toll the reaction took on you. She also explained how abusively the hospital treated you while you were going through this reaction like being locked in a Quiet Room for hours on end and being repeatedly restrained to the bed for up to two hours at a time. That’s a lot of trauma to go through.
My head didn’t want to go back there. I didn’t want to think about how it had felt to have one arm above my head, one arm at my side, both my legs spreadeagled, with straps around my wrists and ankles tightened so I couldn’t squirm free. They told me I could stay there until I learned how to behave. I didn’t want to think about how the wire of energy had made me thrash so hard my face had gotten slippery with snot and tears and panic and how I had felt like I couldn’t breathe as the staff had sat next to me and yelled at me to cut the crap.
My breathing quickened. As much as I didn’t want to go there, my head was going there anyway.
“Can you take a deep breath with me?” Suggested the counselor. “I want you to slowly breathe in through your nose with me as I count to four then we’re going to hold it for four and breath out for four.”
Together we took five ‘four-count breaths.’
“A little better?’ she asked me.
I nodded.
“I’m going to put in a referral to the Partial Hospitalization Program for Children. You go there from 8:30 AM to 3:00 PM every day for 2 to 6 weeks. They have therapy groups, school classes with no bullying tolerated, activity groups, and a psychiatrist for medication adjustments that you meet with every day. With the bullying issue, your health issues, and your PTSD you’ve got a lot going on, we’re going to give you some extra help without retraumatizing you by putting you in another inpatient situation that could trigger your PTSD.”
Before we left the crisis center, I thanked the counselor, told her that I wanted to learn how to straighten my hair like that, and gave my mom a big hug. A nagging part of me felt guilty that I hadn’t trusted her. Once again, I felt relief wash through me that I had her as a safety net.