A narrative (in progress) about people I did not expect to have such a heavy influence on my disability experience.
Written by Kayla Erb
The Boob Luge
Claire was one grade above me, but I didn’t know her until I was in tenth grade. She was athletic and had older friends from the varsity teams she played on. She somehow made her vivid green and black fitted prom dress with abdominal cutouts look timeless. She was loud, introduced herself to everyone and inserted herself into the conversation as if she had known them for years. She had a talent for reading people and to this day makes intrusive questions look charming. She knew everyone. I saw her everywhere. We were friendly, but we were not friends. She was a mysterious classmate who I thought was cool but never knew.
Years later, Claire and I would end up on the front stoop of a house party on 6th street.
“Do you want a drink?” She asked
“No thanks, I don’t really drink”
“Ok, how about water?”
“Sure, thanks” She grabbed one for herself too.
“I have no problem with drinking, you can have one around me, it’s not like that or anything.”
In her classic intrusive yet charming demeanor, she asked why I didn’t drink. I didn’t know what to say. I didn’t feel good. I knew drinking would make it worse, but does she really want to know about my chronic diarrhea?
“This- just isn’t my idea of a good time, I guess” I said
“Me neither. I have my car- let’s go get pizza.”
“Should we see if anyone else wants some?”
She swung her keys from her lanyard, and I followed her around the corner where she parked on 2nd Avenue. I sat shotgun in the convertible I saw her drive in the homecoming parade her senior year. The air was damp, hot, heavy and it smelled like low tide- one of the few downfalls of living on the south shore in the summer. We pulled onto Broadway and walked into Spasso’s Pizza together. She knew the employees, of course.
“It’s late, so we threw in some extras-no charge.”
“Are you sure?” She asked
“Take ‘em. Otherwise, they go to waste.”
She was flying to Australia to study abroad soon. I looked around at everyone else at the party and wondered if I should have given them more chances to talk like Claire and I were. They were fine. I liked them, but I never connected with any of them. They had their friends, and I was just there, tagging along with my boyfriend. If we had broken up, I would never have been invited. Claire felt different. She wasn’t asking about me to be polite. She actually wanted to get to know me.
About an hour later, our boyfriends came outside. Ricky and Rob. We joked that they loved each other more than they loved us.
“Aw, you got PIZZA?” Ricky yelled. His voice always goes up ten notches in volume when he's with the boys.
They joined us on the stoop until I got embarrassed at how loud Ricky was and decided the night was over, then Claire drove us all home.
“If I don’t see you before you leave, have a safe trip!” I said
“Thanks! We’ll pick up where we left off when I get back.”
She was true to her word. About a year later, we took an Uber to Queens to celebrate Christmas with the same friend from 6th street. He just moved and wanted to show us his new digs. Ricky packed our reusable tote bag with two frozen Digiorno’s, a piping hot, fragrant rotisserie chicken, Tostito’s tortilla chips- the “scoop” ones, a jar of salsa to match, and Bud Light Limes. Claire and Rob arrived shortly after us. She greeted me with arms full of gifts and wine and went in for a hug and kiss despite not having the arm space to share. “I got my nipple pierced,” she whispered in my ear.
“What are you drinking?” she asked.
It was my mixture of hot cocoa and Fireball, both of which were gifts I received at my job. It was terrible, but I was new to drinking, and it seemed festive.
“I’m in,” she said.
I don’t remember demanding to see her nipples, but from there on, it seemed to be a recurring theme. We get drunk, and I ask to see her nipples. She has the sense of social queues to know when the time is right. All I remember is her telling me how painful it was and that it hurts when her long hair gets caught in the piercing because my other friend told me the same thing, and it talked me out of getting my own nipple pierced.
I can’t get tattoos or piercings anymore because I am immunocompromised and prone to infections. I had just started my first medication, Remicade. There are a bunch of names for the type of drug it is- immunomodulator, immunosuppressant, biologic, TNF- Blocker, and my least favorite, chemotherapy. They all mean the same thing. The medication takes my immune system and tells it to calm the F down.
Autoimmune diseases are well-meaning assholes. When you have an autoimmune disease, your body mistakes healthy cells as invaders that need expulsion. For me, it’s rooted in my gut. For no reason at all, my intestines will become inflamed, trying to rid the non-existent enemy. My immune system is in a constant state of “look, I’m helping!” while throwing water on the oil fire. Remicade puts the lid over the flames and says, “thanks, you’ve done enough.” It stops the fire from spreading through the rest of the kitchen and taking over the whole house. My gut health is connected to my joint pain, which controls my muscle pain, then my fatigue, sleep patterns, weakness, concentration, and mental wellbeing.
It took about six months for Remicade to work for me. By December, it was eleven months since I started. Remicade is administered via intravenous infusion in my doctor’s office. I wasn’t allowed to drive to or from the appointments my first few times, and I had to have someone with me to keep an eye out for adverse reactions during and after the infusion. To prepare, you are given over-the-counter pain relievers (Tylenol), steroids (Solumedrol), and antihistamines (Benadryl). The side effects of steroids for me were trouble sleeping, increased appetite, night sweats, and increased heart rate. My hands were shaky, and I could hear and feel my heartbeat in my own head. If that wasn’t enough discomfort, the antihistamines made me drowsy, weak, nauseous, and high—a delicious cocktail of jump-out-of-your-own-skin discomfort. Every six weeks for five and a half years, I would sit in the giant black recliner with my IV for two hours, zone out into space while the nurse attempted conversation, trying to contribute through the foggy brain. After a few months, my body got used to the Benadryl, and I would be very high for about a half-hour through the infusion and would be fine in time to drive home. The doctor always seemed to check in on me during prime time high. I think he did this on purpose to laugh at my slurred words of gobbly gook “yesssssdoctorrrrimmmfeeellinnggggreaaaaat.”
On infusion days, I would come home to my requested comfort food dinner. I would alternate between Panera Mac and Cheese, Chipotle with a Mexican Coke, or Albert’s Pizza in Copiague- the square pie only, with a side of wings. On the way home, I fill my flat rate frozen yogurt cup with birthday batter, strawberry boba, strawberries, carob chips, and mochi. When I get home, Ricky always has my dinner waiting for me on the couch, Modern Family ready to watch, my own heaviest knit blanket, heating pad ready, and he, kindly placed far away from me in the other room. I eat as much as I possibly can, take a hot shower, and try my hardest to stay awake until 9 PM so I won’t wake up at 3 AM from steroids. The next morning, I am always achy and groggy, but it usually passes by the 24-hour mark.
All of this was worth it. Planned discomfort is better than unpredictable pain. Remicade worked. It was prescribed to me for about five and a half years before the FDA changed their regulations on dosage frequency, and I had to move on to something else. Six weeks was perfect. I would feel tired and have a minor breakthrough of joint pain around week five, but it would go away after every infusion. I had small hiccups of flares here and there, mostly stress-induced or a result of indulging in fried chicken. It rid me of all symptoms except one, arthritis in my left hip.
Most people assume I have Rheumatoid Arthritis. That seems to be the one everyone knows. I have Inflammatory Polyarthropy, which means arthritis in more than five joints. Most people hear Crohn’s Disease and think “diarrhea,” but for every person you meet with an autoimmune disease, they probably have a CVS-receipt-long list of complications that came with it. Most of my joints are easy to massage and address the muscles around them to relieve the pain. The hip joint is complicated. You have to remember how connected your body is. Finding the root of your pain can alleviate a lot of symptoms. My hip pain gives me one tight ass cheek that tugs on my back works its way to my shoulders and down my arms. My stiff thighs then pull on my knees and radiate down to my ankles. Frequent massages help, but even the most skilled masseuse has trouble getting through my tight ass cheek. My muscles resist the massage.
The night of the party was cold, and my hip was feeling it. Claire and I were drunk on the couch with our Fireball Soup filled mugs. I laid on one end, and she laid on the other. It was a small couch, so her legs were by my head, and mine hers. Drunkenly, she fondled my bum cheeks, as per usual.
“Hold on,” she said in a serious tone.
“That shouldn’t be here. Can I examine you?”
Claire had just graduated from Physical Therapy school. Massage therapists are there to relax you. Physical therapists are there to heal you. She always says, “PT actually stands for Pain and Torture.”
Queue John Mellencamp’s “Hurts So Good.” Claire dug her thumbs into my hips, working her way into my joint and releasing the muscles that fought so hard to stay tightly wound into knots engulfing my hips, glutes, and thighs. It was painful, but I didn’t want her to stop; I needed the release so desperately. With one hand, she was a Doctor; with the other, she rubbed my leg, comforting me through the process. She talked me through it all, explained it in scientific terms I otherwise would have been interested in if I wasn’t being tortured. Years of tensions finally broke.
“Ohhhhhhhhh ho ho ho ho!!” I wailed, “Noooooooooohhhmyygooddkeeepgoinggggg” I was causing a scene.
Ricky and Rob walked in from the kitchen to see what all the commotion was.
“Ok- I'll excuse myself,” Rob said.
They both returned to the kitchen, and no further questions were asked. The next morning, I woke up. For the first time in nine years, I didn’t have any hip pain. Not many friends will show you their nipples and give you an ass rub in the same night.
Claire and I share a lot of memories from different perspectives in high school. We had shared friends, we were at the same events, but we were never there together. Hardly any of her high school friends stuck around. They were intimated by her. Everything they hated is everything I loved about her. She is smart, incredibly so, and a fantastic doctor. She takes one look at me and knows I am in pain. She can identify the source of it better than I can in my own body. She cares deeply. So much that it hurts her. She carries the emotions of all her loved ones. She worries all the time, but she takes action. She holds people accountable. She lost a lot of friendships along the way because of that, but those people are healthier because of her. Some of them are alive because she forced them to be.
I don’t know what power it was that led her to drive me to the pizza place that night on 6th street, but I am grateful every day that it brought us together. I never expected to be talking prenatal vitamins and family vacations together with that girl from school. When she drove me home, I hoped we would be friends, but I never anticipated precisely how close we would get.
Cherry Grove, Fire Island. August 2019, my bachelorette party.
“Do you wanna do a boob luge?” Claire asked.
It was a nude beach catered to gay men. No one paid any mind when she took her top off. I was eight drinks in and hysterical, so the luge didn’t last very long. More White Claw came out of my nose than it went down my throat. We both fell in the sand laughing, surrounded by love and friends.
“I can’t wait to tell your kids that someday,” I said.
You better fucking not,” she replied.