The Skeleton no longer living in my Closet
Merrin Alice Abraham
The piece birthed out of pain and loneliness. It has been growing within me each year as I faced new limitations in unexpected areas of my life. I hid this part of my life, hoping to never let it see the light of day. But I finally decided to write about my journey of living with a chronic condition. I wanted to tell the world what it feels like to live in pain, because every breath I take extends not just my life, but the pain I have to live with until I die.
I
decided to name my disease Ikra.
She enveloped my life like a spindly cobweb — barely visible yet inherently present. I remember the evening I whispered her name: lying immobile on a hospital bed, tears rolling down my face, in the darkness. Naming ‘her’ Ikra helped me disassociate from the turmoil raging inside me. My payer from long ago came floating back to me, a selfish, unspoken desire.
Lord, give me a disease that will debilitate me in a way that will make people care for me.
As I whispered those words, my 10-year-old self didn’t fathom what I was asking for. I saw people who were sick being cared for, unlike me, who was expected to deal with everything by myself because I was ‘healthy enough’. Little did I know that my understanding of sickness and hospitals was skewed by soap operas like ‘The Bold and the Beautiful’ and the BBC documentaries that I used to watch on our 25-inch television. I believed everything I saw. I thought friends and family would flock to my hospital bed. I envisioned vases of flowers, baskets of fruit and cheerful nurses who would flit in and out as they checked on my health. I wondered where this prayer stemmed from considering I had a loving family, church, and friends. What more could I ask for?
I sat on the high stool in the kitchen stitching the hook on my school uniform skirt as I told my mother for the 10th time about my shoulder pain. She glanced at me, slightly frustrated, because I always put things off for too long, especially things related to pain, and now here I was telling her about one very specific type of pain.
“I’ll massage your back and shoulder when you get back from school. For now can you please wear a different skirt instead of trying to stitch that one when you barely have ten minutes? And eat your breakfast.’’
Shrugging, I walked to my bedroom and did as I was told. After that, I would ask for a massage almost everyday, clutching my right shoulder in pain. My mother examined my back and shoulder and concluded, “I think it’s because you play a lot of throwball and basketball. Maybe cut down on that for a bit and it’ll get better.’’
I complied since I had no other choice. But the pain never went away. There was nothing agonising about this pain, which is why it was concerning. A slow throb that never let up, reminding me of its presence. Noticing no respite, my mother looked at my spine once more.
“I feel like your backbone is slightly bent.’’
I couldn’t understand what that meant because I couldn't see it in the mirror. So we made the trip to the paediatrician and he dismissed my mother’s worries until he himself took a pen and traced my spine.
“Looks like you were right. Her backbone has started curving to the right. It’s a genetic problem that starts manifesting during adolescence. Did you notice anything while she was growing up? This is something that can occur from birth.’’
My mother wasn’t expecting this response and I had no understanding of what was unravelling.
The doctor continued, “Scoliosis. There isn’t a cure unless you opt for surgery. Why don’t you get an X-ray and meet an orthopedic surgeon to determine the level of her curvature and which further steps to take?’’
I stared at the doctor trying to repeat scoliosis and stumbling over the syllables. “Scolisis, scoliosis, scolisis ...’’ I couldn't even pronounce the name of the problem that had decided befriend me irrespective of my wishes. There is no problem that can’t be fixed right? Right??
I searched the Internet, using up my precious 200 MB-per-month plan in a single day.
Scoliosis is a spinal deformity that causes an abnormal sideways curve in the spine, often in the shape of an S or C. Scoliosis can affect people of any age, but it most often starts in children aged 10-15. The cause is unknown in most cases, although there may be a combination of contributing factors, including: birth defects, infection, tumors, genetics, cerebral palsy, and muscular dystrophy.
​
Treatment can help, but this condition can't be cured.
​Chronic: Can last for years or be lifelong
An incurable, lifelong condition. My fate was sealed, no questions asked just because ... No one had any answers and at 13-years-old my world started falling apart.
We journeyed from Mysuru to Bengaluru to visit a spine specialist and all I can remember is being extremely bored as I waited to see him. I saw doctors running around with my X-ray and I wondered, is it that serious? He explained how they calculated spine curvature and told me that mine rested at 40 percent right now, which was still treatable with surgery.
“As you grow up your spine is going to bend even more and your rib cage will shift. Doing nothing will cause structural damage along with respiratory issues later on. Why don’t you give serious consideration to surgery?”
Surgery was out of the question because I was still at school and my parents didn’t believe it was the right time to open up my back and insert a steel rod and drill screws into my spine to keep everything in place. So we met Ayurvedic and homeopathic doctors, hoping for an alternative solution.
Ikra didn’t care about inconveniencing me in the slightest. Instead of just existing as a part of me, she began taking over every single part of my life. I was told not to carry my school bag on my shoulders and instead had to carry two separate bags in my hands. I still do not understand how this was supposed to help me because I was soon dragging the bags around because of their weight. Textbooks and notebooks were too heavy, so my mother cut up my textbook into chapters and I started using paper for all my notes. My classmates began asking me what was wrong, and for the first time I wanted to disappear. I didn’t want to answer those questions, I did not want to be the odd one out. Extreme physical sport was out of the question so I quit rollerblading, throwball and basketball. Dancing at the end of year celebration was one of the highlights of my schooldays. But I had to give that up too. Each year I was expected to give up something else because of Ikra. Still, I decided to audition for the Master of Ceremonies spot in my final year (10th grade) since this would only involve standing. I braved the condescending gaze of my classmates. I stood as tall as I could, reading from the script I had written myself, hands shaking, beads of sweat appearing on my forehead, while Ikra relentlessly penetrated my every thought. I couldn’t concentrate, as my tongue stumbled over the words and my voice was drowned out by the booming in my head — they will never vote for someone like you ... someone with a crooked back. You don’t look the part. Wait and see. Even your best friend won’t vote for you. Ikra was right. I only got five votes. My best friend abstained.
When I was 14, we made our annual trip to my hometown of Kerala. I loved the steaming hot tapioca and stone crushed chili chutney my grandmother made for breakfast, but I could never shake off the feeling of being an outsider. I could run through the rubber plantations, play with the rubber sheets, eat with my hands, express my undying love for coconuts, and wear churidhar pyjamas, but as soon as I spoke Malayalam I would give myself away.
“Why don’t you try again? It’s ‘mazha’. Make sure to stress the ‘zha’ sound.”
The adults were curiously looking over at the kids gathered around the dining table bickering first thing in the morning about pronunciation. Put on the spot, I didn’t want to embarrass myself again, so I shook my head and continued eating, fighting back tears.
“Your sister can say it, why can’t you say mazha or pazham?” My grandmother’s words pierced my heart as I pretended not to hear.
One morning, a few days into our vacation, we were told to dress up and squeeze ourselves into the Maruti 800 to travel to another district for a consultation. They wanted to check if the Ayurveda hospital would treat scoliosis and if they did I was going to be admitted for treatment. The adults decided what to do and I just had to follow. After the consultation, my sister was sent back to our grandparents home while my mother and I stayed at the hospital. I was admitted for 10 days the first time. On the first morning they gave me castor oil to drink and clear my body. I have never defecated as much as I did that morning. I would make the short trip from my bed to the treatment room every morning. I would lie down on a hard wooden bed, oil was generously poured all over my body and they dipped a kizhi (cloth bag filled with herbs or rice) into hot oil and placed it on my back over and over again. It was hard to bear the heat at first but then I got used to it. Then they would steam my whole body and off I would go to take a shower after resting for a bit. The first treatment didn’t really do much for my back. But we came back a few months later, during my summer holidays, and stayed for a month. One whole month. You would think that I would learn patience and endurance during this time, which I did, but more than that I wanted to be with my sister who was spending time with our cousins who had come from Australia. All I could do was imagine how much fun she was having, the food she was eating, and the trips she was going on without me.
“Anu, do you also have a back problem like me? Is that why you are at the hospital?”
Anu smiled and shook her head. “My back pain is simply from sitting too long at my desk in front of the computer. You want to hear something funny?”
My ears perked up at the suggestion of a story.
“When I finished my treatment this morning, they told me I had to sit down for half-an-hour before taking a bath, so I joined the old ladies who were gossiping about their families. An hour later, the staff had to shoo us all away because we had been chattering non-stop. That’s when one of the grandmothers stopped me and asked, ‘How old are you?’ I smiled and said 28. She was so shocked and said, ‘I thought you were one of us. The way you were gossiping made me think you had lived 10 lives’.”
I laughed out loud, wondering how Anu could be mistaken for a grandmother. “I have never tried speaking to them because I can’t talk to them in Malayalam. That’s so nice Anu chachi. At least you have company. There are no teenagers I can talk to here.”
Anu ruffled my hair affectionately before calling it a day. She was the only friend I had at the hospital. I don’t remember anyone else.
My mother and I were situated in a double occupancy room when my grandmother joined us and then my sister. It was a jungle in that room with four people, an extra bed, and all the luggage. But I was finally happy to have some company. My sister and I would take turns surfing the TV channels to find something remotely entertaining. The closest we got was watching the final concert of a Christian rock band called Delirious? and we were somewhat confused because we never knew about this genre. We were only familiar with hymns, country, and gospel music. After that one month of treatment I got busy with my board exam preparations and deciding what to study for pre-university college, while I slowly tried to forget about Ikra.
Yet something else I was forced to change overnight was my wardrobe. My conservative Christian family expected me to wear clothes that covered my whole body and tops that at least reached my thighs. No short skirts, dresses above the knee, short shorts, or any type of sleeveless clothing. Now, because Ikra had permanently decided to stay, I had to make sure others couldn’t see my rib cage sticking out awkwardly. My mother would always say, “Oh no, they can see your back. Why don’t you change?” Why don’t you change echoed in my head, ceaselessly, from the time I woke up till I closed my eyes. I started buying jackets and pullovers and extra large t-shirts so that I could hide myself under layers and layers of clothing. One layer to cover my body, another to cover Ikra, and the final one to cover my uneasiness of simply existing in this world. Covering Ikra was the only way I could pretend that nothing was wrong and I was just living an ordinary life.
It was easy to spot me in a crowd because all you had to do was look for a slush green Puma jacket or a white and blue striped one. My identity revolved around those jackets and they became a part of me as I stepped into pre-university college. I spent two years just rote learning everything in my Business Studies, Accountancy, Economics and Statistics classes. I got great grades and everyone thought I was doing well. But the voice in my head grew louder. The pain grew worse. And I could no longer hold on to the image of being normal when I was hurting inside out.
I thought no one would notice as long as my jacket hid Ikra. I was walking up the third flight of stairs to get to my first class, as I did everyday, when my classmate who was walking behind me asked, “Is something wrong with your back? It looks like one side is higher than the other.”
I turned around and nodded. Her sympathetic stare made my skin crawl. It was a very familiar expression that I had seen on the faces of my relatives when they visited me at the hospital. Oh you poor thing. I’m sure you will be fine soon. Pity and comfort wrapped in phrases that helped no one. I thought it would all be okay when I left home for university to study English.
I continued the cover-up-my-whole-body fashion in a city that averaged 35 degrees Celsius on a cool day. I was dying under my layers of clothes which my friends thought was my idea of fashion. I wouldn’t dare step out of my room without a jacket lest someone see Ikra and ask me about her. But no one really cared. Everyone had their own fair share of worries to live with and mine seemed smaller and inconsequential in the face of depression and other mental health issues. I kept muttering deep breaths, happy thoughts in the face of every inconvenience. The hard wooden backrests in the classrooms constantly prodded Ikra and I had no choice but to squirm around in the seat trying to find an angle that was at best unpleasant. Getting to places around campus was harder because I had to walk at least a couple of kilometres. Everyone rode bicycles while I walked. I never learned as a kid because I chose rollerblading over cycling.
“I’ll teach you how to ride a bike. You just need to find your centre of balance. And then keep pedalling. Throw your foot down if you think you are going to fall.”
“You’ll hold on to it, right? You won’t let go in between, right?” I needed that extra confirmation before entrusting my body to this flimsy vehicle.
“Of course! Just start riding now.”
My friend seemed confident so I did as he instructed and after the first few wobbles I felt optimistic about this venture. But the voice in my head was back.
You think you can ride a bike just because your friend is helping you? You cannot do anything by yourself. Deep breaths, happy thoughts. There’s nothing wrong with me. Everything is wrong with you. When you fall off the bike in the next 30 seconds you’ll be a laughing stock. Deep breaths, happy thoughts. Deep breaths, happy ... I crashed and fell into a bush. When I returned to my hostel room — I had my first fight with Ikra.
“Why can’t you stay out of my head? You’ve already ruined my body. What more do you want?”
Don’t take your anger out on me. Your failures have nothing to do with me.
“How dare you say that? If you wouldn’t constantly bother me, and ... and ... mess with my head, and say hurtful things, then I wouldn’t be angry.”
As if I have the power to mess with your head. These are your own thoughts.
My solution to ignoring the voice in my head was to plug in my headphones and blast Linkin Park throughout the day while I continued draping Ikra, hoping for a miracle. After two years of rock music and jackets I decided to stop pretending. Covering Ikra didn’t bring me any peace. It only exacerbated my discomfort. During my third summer at university I found the courage to walk out of my room without a jacket. That was probably the most freeing moment after seven years of living in chronic pain. I finally chose myself over the opinions of others. I chose to remove the jacket that dragged me down. I was just a girl trying to live a normal life, hoping no one would notice and ask about Ikra. I decided to embrace being the broken and deformed skeleton because pretending that I was perfect hadn’t really gotten me anywhere. This change didn’t mean much for me physically because nothing changed for Ikra, just my mind. But everyone who saw me thought I was holding up better not knowing the invisible hold Ikra had over my life.
Those few years felt great. I walked a lot, watched TV shows, wrote term papers, complained about my professors, and listened to alternative niche music like Still Woozy, Tame Impala, and Portishead that none of my friends were interested in. My final year of university was dedicated to completing my thesis which evolved from jazz in the Pentecostal Church to the space and role of women in the Pentecostal Church. I spent my days in class and nights clocking word counts. But as quickly as those days came they also left. My plan after graduation was to get a job, find a decent shared apartment, and start my eagerly anticipated independent life. Through campus placements and God’s mercy I was hired as a travelling storyteller. I was so sure that I would be unemployed with my English degree that I jumped at any chance to work. I scoured the city with my friends looking for apartments and settled on a three-bedroom shared space.
Everything seemed fantastic! I believed I had figured myself out and got a hold on Ikra. I thought I had finally built myself into the person I wanted to be. I loved my job, being able to read, write, and tell stories but Ikra absolutely hated it. She hated travelling, carrying a backpack around the city, hopping on trains, buses, and the local metro, sleeping in unfamiliar hotel rooms, and the uncomfortable chairs in all the schools I visited. But I ignored all the signs and bulldozed through any difficulty by swallowing painkillers. Halfway through my second year as a storyteller, as I was pushing myself to travel more to get a bonus, right when everything was going well — I had a job, I was paying my bills, I had my tiny shared apartment — my health gave up on me. Mentally and physically. I was drained beyond just being tired. I had been feeding this fire inside me, telling myself ‘I am a strong and independent woman’, when in reality I was just a broken and sad woman trying to make ends meet and forcing my body to live up to my expectations.
Aren’t you going to try to get rid of me?
“And how am I supposed to do that?”
Remember, the first few doctors you met, they said they could fix you with surgery.
“Are you paying for it?”
…..
“That’s what I thought. You don’t let me work so that I can earn and think about getting surgery. Everything just disappears into rent and food. And now you have decided that I shouldn’t travel at all. Why are you tormenting me like this? Why can’t we just co-exist without making life difficult for each other?”
I exist because of you. I am who I am because of you. I am ...
“JUST SHUT UP OKAY! I ... I can’t deal with you anymore.”
The day I broke down and began hyperventilating was the day I decided I had to quit the charade of being independent. But that also meant I had to go back home. What about my freedom? Was freedom more important than dealing with Ikra? Fifteen long years after praying that stupid prayer I realised the folly of being chronically sick. I was never going to be admitted to a hospital where people would come visit me, because my problem was never serious enough for that. I was never going to receive flowers and fruit baskets unless I gifted them to myself. People would never notice my disease if I dressed Ikra properly. The world was moving on but I was unfortunately stuck in a body that didn’t want me. My backbone that outgrew my frame just wanted freedom and I could never give it that. We were both stuck with each other in this cycle of pain.
There will never be a time in my life when I can relax and let everything go unless I’m taking painkillers and lying in bed under my fairy lights. I can no longer work a regular 9-5 office job. I can no longer exert my body physically even if I’m on a vacation. I cannot travel long distances if the only option is to sit. I cannot, cannot, cannot ... Safe to say that I ruined my health by idealising my independence because that’s what everyone around me said and did. I thought that was the right thing to do and the right person to be. The only way for me to survive in this world is to depend on someone else and that is really hard to do when everyone is aiming to be the best of the best. No one wants extra baggage in a relationship when they can find something lighter out there. I kept telling myself to swallow my pride and ask for help whenever I needed it, but I just couldn’t speak. Years of burrowing in on myself had rendered me incapable of asking even though I was happy to offer my assistance to anyone at any time. I realised I had turned into a glorified doormat. Years without a job while living at home had cut me off from reality and society.
In this world built for normal people, where do I fit in? How do I make my worth known when I cannot sit in a chair without a backrest? When I cannot fend for myself because I am in constant pain and downing painkillers is only going to make sure I die faster and sadder? At the cusp of this realisation I have found no answer and only questions.
This material world was never built for me. I probably shouldn’t exist in this form but here I am, deformed and unworthy.
I am stuck with Ikra and Ikra with me.
Merrin Alice Abraham
Merrin Alice Abraham lives in Mysore, though her roots are planted in Kerala. She completed her Integrated M.A. in English Studies from IIT Madras. She is a trained storyteller and theatre artist by profession and a poet and short story writer by passion. She developed an interest in English by reading the Bible when she was bored at church. Following this, she shifted to reading Victorian literature which is the cornerstone of her life. Besides drinking bitter coffee and analyzing Asian media, she is trying to find a horror story that will scare the wits out of her. Her short story, ‘The Transformation’, has been published in an anthology called, ‘As Beginner for a Beginning’ and her poem ‘Pretty Petty Thoughts’ in the first issue of Write and Wrong. She is currently juggling curriculum development, blogging, and studying to see how much more she can balance on her already overflowing plate.
Writer, Poet, Storyteller
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