My Journey With Scoliosis

I have contemplated for many years if I should ever speak about this. I do not like to show my personal life, or experiences that I have been through. To be honest, I still feel embarrassed to talk about this. I’m not afraid of what people will think. I just feel like compared to other people’s’ life struggles, mine was still fixable? so I shouldn’t complain or tell my story as if I have suffered throughout my life. But I have suffered and it has taken me years to realized that I did and that I lived through this traumatic experience.

Please take the time to read my story. It is very long and extensive, but it would mean so much to me. This isn’t a common topic people speak about and sometimes I feel like it is brushed aside compared to other diseases. I am also guilty of this. If you think about it, this disease, if you want to call it that, is very agonizing, even dangerous. I also realize that many people do not know anything about this disease at all. There are many misconceptions and I don’t blame anyone. I, too, was so unaware until it happened to me. I hope to share my experience, as anyone who fights this disease is different, and I hope to provide some awareness. I do not intend for this to scare people. This is what I went through.

This is my story with idiopathic scoliosis.

I will take you guys through the entire timeline. I am talking about this now because June is considered to be Scoliosis Awareness Month and December 22, 2020 will mark 10 years living with my correction surgery. Writing this was very emotional for me and I have been editing this and gathering my thoughts for over a month. There is something very liberating in writing about past trauma, but it also brings up a lot of suppressed feelings that I really did not want to go through again.

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The Diagnosis

It was a hot day in August 2009, about 5PM in the afternoon and I was sitting in the waiting room for the doctor’s office. I was entering my freshman year in high school and all students were required to receive a physical before playing any sports or participate in P.E. (gym). I actually remember the exact outfit I wore, a blue Aeropostale shirt with black gym shorts — it’s Texas, it was very hot outside. My mother stayed in the car as this was supposed to be a quick 10 minute check-up.

Finally, my name was called. The check-up was going smoothly. I was asked to do the scoliosis test, where you stand up and they check the alignment in your hips and shoulders to make sure they are even. Then, you bend over to touch your toes, so they can check your spine curvature under your shirt. The nurse, who was a schoolmate’s mom, keep in mind I lived in a small town and everyone at the school was involved, including the doctor’s kids, made me stand back up and said she would be right back. She came back into the room with another nurse and they sat me down on the table and checked me again. She asked me if I had been examined for scoliosis. I said no, only the test once a year in gym class where you bend over and I always passed that one, maybe because I have long arms and was decently flexible. Who knows if there is any adequacy to that test. I would say no.

She told me to call my mom to come inside. I called her and was starting to get very nervous. I had no idea what she was talking about. I heard about scoliosis, but never in my life I thought I would have that. It couldn’t be true. My mom entered the room and the nurses told her the diagnosis and then they recommended that I should see a specialist. They offered to send me to a doctor in town, but my mom was not going to do that yet. We got in the car and headed home. I can’t really remember what was going on after. I remember my dad finding out once he got home from work that day and they both looked at my back again. He said that he remembered I was complaining about some back pain in the past year and he would kindly rub my back so that I would feel better. I thought back on it and agreed, but couldn’t believe this was why.

My parents decided that they would take me to Houston, over an hour away from my town, to see a spinal specialist. My mom, who has had a knee replacement, did not trust the doctors in our town and only wanted me to see someone who was at the top of their field. The doctor that did my mom’s knee replacement, some years before, had referred us to his colleague, Dr. Francis. We had an appointment in the next two weeks.

The day came for the appointment and my family and I traveled to Houston. We did not know what to expect, we hoped this opinion would be different. It was a very long appointment. I had many x-rays. They were curious about my growth spurts and how far along I was with my development. I was 15 years old and oddly tall and lanky. I looked like I could have reached my end height. Most women develop and stop growing around 16 to 18 years old. It obviously depends on the person, but that is the typical age group. For men, it is much later, 20 to 23 years old, again it depends.

The x-rays came back and Dr. Francis showed us images on an x-ray screen and basically explained to us very carefully and empathically that I indeed did have scoliosis. It was not just a small curve. It was 46 degrees on the thoracic and about 12 degrees on the lumbar, a reverse S-curve.

When a patient has a degree exceeding 10 degrees in the spine, it is usually diagnosed as scoliosis. Curves less than 10 degrees are typically normal and can correct themselves later on depending on the growth of that patient. When the curve typically exceeds 40 degrees, surgery is needed. All humans have a natural curve to their spine, some claim this to be scoliosis, however this is absolutely false. It is perfectly normal, remember 10 degrees or more is when you need to start worrying.

I obviously had passed that point and Dr. Francis stated that I would need surgery. He continued to explain the process and information for the next steps to consider when this would happen. I could not remember a single thing after the word surgery. I blacked out and starting crying so much. I was causing a scene. I couldn’t believe it. I looked up at my parents and sister and they were crying too, which made me cry more. Dr. Francis tried his best to calm us down and reassure that it was going to work out and he sees patients way worse than me. He told me that I was lucky because I could have the surgery and that most patients are past the point of their growth and cannot have the surgery at all, ever.

To have the surgery, a patient needs to be very young because the bones in the body typically harden after puberty and once the bones harden they become very difficult to move. As stated before, the curve has to be over 40 degrees. Patients with degrees less than 40 are given a brace and physical therapy for them to moderate their scoliosis and keep it from growing and twisting. Once you are too old and the curve is too extreme, you basically live your life in pain. These people can suffer grave complications throughout their life, including lung collapse from the spine twisting, organ failure, punctured organs, etc, or even early death. 

I, fortunately, was still young enough for the surgery to be plausible and successful. Unfortunately, my curve was so large and I had to have the surgery. Had I known before, I could have slowed the growth of the curve and maybe not have the surgery at all. But the only question for me was, when? When did I first start having symptoms and start progressing this curve at this rate of extremity? I was so tall and lanky. There were times in middle school and later in high school where I grew six inches in one year and did four more inches the next year.

My mom questioned whether or not scoliosis was hereditary as she remembered her mom, my grandma, had a small curve in her upper spine. My aunt, her sister, had a small curve as well. Dr. Francis mentioned that a curve that small wouldn’t carry genes far enough for me to have full-blown scoliosis, especially since my mom had no curve. My dad’s side had no trace of it either. Then, my parents asked if it was because I was so tall for my age and they told him I grew so much in one year. Maybe my body couldn’t keep up with my bones? Possibly.

There are many types of scoliosis: 

These can occur at different stages in a human’s life.

  • Congenital Scoliosis: where a person is born with scoliosis because the spine does not develop in the womb.
  • Early Onset Scoliosis: the curve appears in children before puberty or age 10.
  • Adolescent Idiopathic Scoliosis: a change in shape of the spine when a child is growing. The spine curves and twists at the same time.
  • Degenerative Scoliosis: occurs in adults, sometimes the bones get weaker as a person ages.
  • Neuromuscular Scoliosis: caused by a neurological muscular condition.
  • Scheuermann’s Kyphosis (Hunchback Syndrome): where the front sections of vertebrae grow more slowly than the back sections during childhood causing a forward curvature.
  • Syndromic Scoliosis: scoliosis develops as part of a syndrome.

I was told that I have idiopathic scoliosis. Idiopathic means that there is no known cause or origin. Sometimes it runs in families and sometimes there is no trace. It is the most common diagnosis and affects both boys and girls, but it is eight times more common in girls. This made sense since I grew so fast in such a short amount of time. The symptoms, although I never experienced any until I was diagnosed, can vary from person to person depending on the degree of curvature. Common symptoms are shortness of breath during activity, back pain, and a bulge in the back from the rib cage.

My x-ray not only showed my double curve, but highlighted the fact that my spine was also twisting. My left rib cage was protruding outward and forward and my right rib cage was protruding backward, clockwise. My ribs were becoming squished together on the right where it was protruding back. I hadn’t even noticed before, but after, it was all that I could think about.

Cut back to the appointment – we left upset, scared, and somewhat hopeful. I remember riding back from Houston, the sun was setting, and I was still shedding tears. I just could not believe it. I recalled a memory I had the year before, where they were doing the test on us in 8th grade, middle school. I remember doing the test and being like, “Why am I doing this? I will never have scoliosis. This is whatever. It won’t happen to me.” That thought haunted me. I felt like it was karma. Here I am, a year later, crying in the car because I have severe scoliosis. I felt terrible, and oddly guilty? Like I did something wrong when I thought that and now I am receiving punishment. It sounds so irrational, but that is how my mind works. I basically blamed myself.

The Next Steps 

Two weeks later, I came back for an appointment to fit me for a brace. The final decision was that while I was coming close to ending my growth, I would wear a brace in the meantime to see if I would grow more within the next year. Dr. Francis was concerned that I could grow more within a year, comparing my height to my parents, who are 6’2″ and 5’10”,and he did not want to stunt my growth. Once you have surgery, the spine does not grow anymore. By the next year, if my body was not growing, then I would have the surgery.

There are some variations of braces that are used to treat/maintain scoliosis. I wore this one.

download image source unknown.

It had an opening on the side of my body where my ribs needed to be pushed back into place, or straightened. The brace came down over my glutes and up to under my bra cups. I wore the brace for 16 hours a day and was allowed 8 hours off. The time depends on the severity of the curve and the amount of time needed to keep my curve from progressing.

I was so embarrassed to wear this. The first few months wearing it were so painful. My ribs were sore, I couldn’t bend down in it, twist, arch my back, nothing. I did not want to wear this to school at all. I was so afraid of being made fun of for having a back brace. I told absolutely no one in my school that I was diagnosed with scoliosis. I knew how the people at my school were, if they would make fun of someone for something as small as having hair on their arms as a girl (yes, they did) they would definitely make fun of a back brace. I did not trust anyone. I think maybe one of my very, very close friends suspected it later in the year, but she was kind enough to let me not know that she knew. I never wore the brace at school. I was too paranoid someone would hug me or poke me (my school was small and very close and it was 2009/2010, people at school were allowed to hug each other then). I also did not want to answer so many questions from people and did not want to be looked at differently, like something was wrong with my body, like I was not perfect. This later turned into a bizarre body dysmorphia. I will explain that in the future maybe.

At the time, I was on the drill team and loved dancing, but that had to end very quickly. I still was allowed to play sports and continued activities in P.E. and even played softball, although I mostly sat benched. I continued to hide the fact that I was going through something fairly distressing as my body would ache every single day. As a teenager, you do not expect to go through something life changing or severe. My heart aches for every single young person/child that has to go through some physical/mental illness, or disease. It is so difficult to understand your feelings and feel validated in what you are going through. I did not understand most of my feelings and thoughts until years later after analyzing my experience. I went through trauma and I still live with some PTSD from this. This ended up affecting my everyday life and how I perceived myself. I was 15 years old. There is so much pressure in high school to look and be perfect and I felt that deeply. No matter what anyone said, I felt the pressure to look a certain way and with this disease there was no way I would be the same as everyone else. That was a blessing in disguise because now, almost 10 years later, I am so happy that I am different, or at least look like it from the back.

It seems hilarious because if you look at me now you would have never known or guessed that I have scoliosis! Only when I am in a bathing suit and you just so happen to look at my back, which does not happen very often.

The Surgery

Fall 2010 came around and I went to my quarterly check-up. The doctor requested more x-rays and a brace adjustment to tighten my back straighter. He mentioned that my growing will most likely subside in the next year and was afraid he would lose the time where my bones would be malleable enough to move around. The curve was already so big and I was so tall and older than most of his young patients. My mom and Dr. Francis agreed to have my surgery over Christmas 2010. I thought, this is too fast I cannot process this. Surgery? Am I really going to go through this?

The doctor went over the surgery procedure with us and mentioned that it would include a bar and a few screws into my spine, but he did not really know for sure until I was in surgery. They tell you this to prepare you for what they will do, but also won’t guarantee anything because something else could happen during surgery and might require another route.

No amount of preparation the doctor gave me was actually going to mentally assure me what was going to happen post-surgery. But I had a lot of faith in them and tried not to focus on it too much. Most of the feedback was positive and assuring. Little did I know it would be different for me.

I was put into physical therapy a few months before to tighten my core and back muscles so I could use them post-surgery to help me hold up my back. Whether or not this was helpful, I am not sure, but I did not notice anything specific. However, I did not mind the therapy at the time because I felt like I was helping myself.

December rolled around and I was on Christmas break. I left my school thinking that I would see my friends again in January with a new back and no one would ever know what happened, so I thought.

The downtime in the hospital was one week, so my parents and sister decided to rent a hotel for a week really close to the hospital in Houston. The day before my surgery we checked into the hotel, which was near the Galleria mall, and they let me run around the mall. My last moments free to move around sans metal spine.

The next morning, we woke up at 4 AM and I bathed in this antiseptic solution. It was brown and had an odd smell, not what I wanted to do at 4 in the morning. My surgery was scheduled at 7 AM and we were told it would be a 7 to 8 hour procedure. I couldn’t imagine being unconscious for that long. Before I knew it I was whisked away to the prep room so I could get ready for surgery. I remember the room was freezing, I was shivering so hard my teeth were clacking. The kind nurses assured me everything was going to be alright and I had this strange moment where I said a silent prayer in my head. I am by no means super religious, let’s say uber-laxed. I felt so bizarre doing it, but I was so scared. At the same time, I was so out of it that I couldn’t process anything that was happening. They put the anesthesia on and I fell asleep.

During this time, my parents and sister were in the waiting room the entire surgery. I am not sure what they did and I don’t think I ever asked.

I cannot remember the next few days after I woke up. All I know is that I woke up to what seemed like late afternoon in a hospital room, my family sitting around me watching tv. I was full of pain medication and felt this sharp pain coming from my left hip. As I recall, I don’t remember back surgery including hip pain. I was told later that my surgery was extremely difficult. When my parents first saw me, still unconscious, they said my face was very swollen from laying down on my face during surgery. My mom mentioned that when Dr. Francis came out of the surgical room to notify them, he looked exhausted and was wet from sweating so much. I lost a lot of blood. My bones were much more stiff than anticipated and I needed a spinal fusion.

A spinal fusion is when two or more pieces of vertebrae are fused together with a piece of bone and/or metal. The bone is extracted from a large mass, typically the pelvis – why my hip was hurting so much. They did not know I would need a spinal fusion until I was already being operated on. The hardware required for my surgery also changed, I had two bars in my spine, each lining either side of my vertebrae, and about 18 screws, each 1.5 to 2 inches long. The screws hold the bars to my spine. The bars ensure my spine stays put and the fusion makes sure the spine does not grow anymore. Is my spine perfectly straight up and down now? No, as I stated earlier, my curve was very large and my bones were stiffer than expected so they could only correct it about 90% and then basically fused my spine together so the curve does not progress anymore. Dr. Francis also attempted to re-twist my rib cage a bit so my back does not have a bulge. He never fused my lower back. My bars only go through 3/4 of my spine. I am still able to move my lower back far enough to have some freedom, not too much to do anything crazy, but enough to bend down and touch my toes.

Here are my post-surgery X-rays.

 

The amount of pain I endured the next few days was unimaginable. I truly cannot describe how this felt. I can only compare it to getting run over by a car and having your back destroyed. The first day out of surgery they make you walk with a walker of course, and let me tell you – I WAS NOT going to do it. I screamed and cried. These poor nurses did not like me at all. I don’t blame them, I was unbearable.

But little by little, I ended up walking because it was absolutely necessary that I start training my body to do the most simplest motion – walking. Learning to walk again was the most unnatural thing I have ever experienced. I sympathize for anyone who has had to do it. It is so painful. I did not realize how much you needed your back to do everything! Without your back, you literally cannot do anything.

I also noticed I was slightly taller than before surgery. Apparently I grew an inch from the correction. I was 5’9″ now and 100 pounds. I lost so much weight from surgery, about 15 pounds. I was always a lanky, skinny kid. Some would complain that I was too skinny, but it was not like I was starving myself. Later, I would come to know that I had a hormone deficiency, but didn’t know that at this time and it was very shocking to see me. I was so fragile looking and with a new back, as I call it, I looked even more lanky and awkward.

I spent Christmas in the hospital with my family which was not cool, but I was grateful I was alive. A few gross things happened before leaving the hospital. I received a blood transfusion a few days before I was discharged because I lost so much blood during surgery I really needed to be ‘refurbished,’ for lack of better words haha. That was an interesting procedure. While I was unconscious during surgery, they planted a stint in my chest near my heart. When I woke up I was so confused about it protruding out of my chest. To give me blood, they hooked up a blood bag to the stint and let it funnel through the small tube into my main artery. I could feel the blood rushing through my heart. It was gross. Another gross thing was that I had two drains plugged into my back to drain any fluid from the surgery, mainly blood and other liquids. This had to be changed every day and it was so disgusting. I cannot believe I saw that coming out of me. Insert barf emoji here. And my last gross experience was having a suppository because my intestines were so backed up. I was not walking very much and the doctor had to slightly move around some of my intestinal track to adjust my back. Mega gross.

The day finally came for me to be discharged from the hospital. I spent seven days in that room completely lethargic. They told me recovery was usually six to eight weeks. I was given some pain medication and was sent home. I had to wear another brace, this time it was straight with no holes in it. It was mandatory for every single time I was in the car to protect my back in case anything bad happened while driving. Truthfully, I probably wore this thing twice. I was asked to make check up appointments and if I needed anything to call or come see the office.

The Recovery

The worst part of this experience was not having the surgery, it was recovering from it. I spent the next four months of my life in so much pain I wanted to die.

I was suppose to go back to school early January 2011 for my sophomore year of high school. That didn’t happen. My parents asked the school for me to skip for the next month to give me more time to adjust and heal. January went by in excruciating pain. February came around, went to my check up, begged and cried for more painkillers, and went home still in pain. I will say, the doctor that prescribes the pain medication, who is different from the surgeon, was very patient with me and gave me more than I probably needed. My mom, who very well knew kids shouldn’t have their medications by their beds every night, kept them in her room in a cabinet where I obviously couldn’t reach because I could barely walk. I was suppose to be off meds in February, but I continued taking them until March-ish.

I was on antibiotics for the first month, then morphine, hydrocodone, muscle relaxers, and maybe something else for pain. These were all spaced out and on a need-basis and my mom was careful with how much she gave me. I hated taking these medications, but I couldn’t function without them at all. I was a completely different person on these medications. I was depressed, cranky, I cried so much all the time, I was agitated, you couldn’t even speak to me without me getting upset. My parents did everything they could to make me feel better, get me on a routine, try to alleviate my pain. I blacked out most of this time. I cannot remember much, even just a few months after I fully recovered I couldn’t recall much at all. Maybe I blocked it all out. There is a study I read that says your mind sometimes responds to trauma by blocking it out as a coping mechanism.

I do remember a few things very clearly. Me, painfully trying to walk around the house with a walker. My aunt scrubbing my feet and giving me a pedicure because the pain meds dried out my body so much the skin on my feet and my body was peeling off. My dad waking me up every morning, giving me my medication and bringing me to the tv in the living room, feeding me french toast that he would take time out of his routine to make for me because he knew I liked it. My sister bringing me water every time I asked for it. My mom giving me showers once a week and trying to get all of the greasy oils out of my hair. Me sitting on an orthopedic chair every single day with a brown blanket my dad bought me so I would feel comfortable. I still own it and it recalls this exact memory.

I also remember hating my life. Maybe it was the pain medications making me so emotional. Maybe it was all the pain I felt for days, months, that would never go away. I remember laying down in bed after having one of my pain induced meltdowns, my mom came in to bring me an ice pack to put under me because my ribs were hurting so much. I kept crying and thinking to myself that I wish that I would just die because it hurts so much. I am not sure if I actually said that to her or my parents in general. But they could tell I was seriously depressed. My parents were never the people to give pity to me or my sister. They always wanted us to stay strong, keep going, and get through things, but when you have a child in pain for so long, I can’t imagine how awful they might have felt to see me like this. On top of this pain, I just felt so helpless and worthless this entire time. I couldn’t do anything I wanted, I couldn’t help myself, not even get up and get a glass of water by myself. I had to rely on someone for every single thing I needed. It was so frustrating for me and I couldn’t stand it.

I remember my sister telling me that she and my mom went to the store one day and she told her that she was so worried that I would never recover, that I had to endure the pain she had to endure when she had her knee replacement and suffered with her knee all her life. Scoliosis isn’t a one time deal. It carries with you until you die. I will pass away one day with this metal in back. This doesn’t get taken out. The surgery technically isn’t a “fix”, it is band aid to stop the progression. The pain doesn’t miraculously disappear. It is a work in progress.

Even my father was worried, he saw that I was so depressed and thought that I might not ever recover. My family had no idea what this surgery would bring me in the future. None of us even knew this was a thing. None of us thought it would happen to us. But my mom told me something very important, something she had to learn at a very young age. Everyone in their life goes through something health-related at some point in their life. Whether you are young or old, you will go through something traumatic, whatever that trauma is, everyone goes through it.

I would always cry and say why is this happening to me? Why me? Why do I have to suffer like this? My father would tell me that this is a very hard time for me, but I am still lucky and will get through this. Some people go through much worse and they don’t come back from it. I have always thought, throughout my entire experience with this, that what I went through was very difficult, but I am still blessed, for lack of a better word. My family could get me a great doctor. My family could afford to take care of me. I had insurance. This disease wasn’t terminal for me. Even though this was terrible, I had so many instances were I could be happy and grateful that this was my ‘bad’ time in my life. Who knows, my life isn’t over yet, sometimes multiple issues occur. This was a very eye-opening time for me as a 15-16 year old. My reality bubble burst. I never thought in my entire life that I would experience unwarranted physical pain. It sounds so ridiculous, but really I thought that. Now I know, no one is spared from pain in their life and it happens to every single person.

During this time, I had a few friends visit me. It was March and I was able to walk more often. My school was notified since my parents were not sure how I would be able to return to my classes without needing help getting around. However, my school did not offer an option for me to catch up on missed classes. I had to finish my sophomore year of high school and my school would not help me. My parents personally asked a few teachers to send work home for me, via my friends, and I would return it to them at my own pace. A few teachers even came to my house to teach me in person and give me tests. These teachers were paid extra by my parents. I felt so embarrassed for them to see me like that, but I thanked every single teacher for coming out of their way to help me. I am forever grateful to them.

Another Surgery

I was 16 and by the way, I did not have a sweet 16 birthday party, it was spent at the doctor’s office.  At this age, I hadn’t started my period, which is very unusual for a 16 year old. Remember, I was very skinny, boney, all my life and after surgery I was much thinner. I was 100 lbs at 5’9″ and as much as I ate, it would take months for me to gain any weight. My parents knew I ate, although I was very picky, and that I wasn’t starving myself. I was always teased for having chicken legs and always being told to ‘go home and eat some cake’. A kid even told me once that my arms were so thin they could snap my limbs. I’ve had disgusting comments said to me about my body by so many boys and girls. I never understood why people wanted to be so skinny, because all I wanted were curves. I never had that. I still barely have that HAHA. All bodies are different and I have accepted that. I still suffer with body dysmorphia because I ended up gaining weight. I can elaborate on my body journey, in a different post.

Anyways, I didn’t have a period, but I was starting to feel cramps. Like bad cramps. My mom assured me it was my menstrual cycle, not to worry, and just take aspirin. For some reason, I felt like something else was happening, but didn’t know exactly what – it was just wrong.  It kept getting worse for the next two days. The third day a few friends, who found out about my surgery, decided to come over to my house during spring break and surprise me with a wellness basket. It was so sweet, I was surprised and very thankful that they would do that for me. At the same time, I was feeling almost worse. My pain tolerance must have been so high because somehow I got through two hours of visiting with my friends before I couldn’t take it anymore. I went to the bathroom to maybe see if something was actually happening with my period. I ended up keeling over on the toilet, completely unable to move. With all my strength, I got myself up and limped to my mom’s room and said that something else was wrong. I couldn’t do it anymore. I couldn’t stand up straight. I could only be bent over at 90 degrees.

My mom told my friends to go home and that I needed to go to the hospital. I’m sure that didn’t freak them out. I was in the ER and the nurse at the desk wouldn’t believe me that I was in pain. I was at the counter crying in so much pain not able to stand. I thought I was dying. The pain escalated so much that I could move at all. After making me wait for 30 minutes in an empty ER room, I was finally sent to the back to a jail cell room (where they put prisoners or criminals who are hurt) because the others were ‘full.’ I’m not here to trash ER rooms or nurses, they do a great deal for humans and society, but this is my experience and I’m going to be truthful, I was beyond upset. After 5 hours of testing and lay weeping in my jail cell, the doctors couldn’t figure out if I was suffering from an ovarian cyst or appendicitis. When asked when my last period was, which was never, the doctors accused my mom of starving me, not getting a period, then threatened to call CPS on her. Yes, this actually happened. So, they decided they would have to put me in surgery to really figure out what was going on before they could diagnose me. Around 10pm, I was in surgery.

I awoke to a hospital room, again. I was told my appendix ruptured as soon as the doctor’s started to operate on me. Right on time. I was cleaned up before an infection could start and my appendix was removed. There is not really a cause for appendicitis. It can be anything or nothing. It isn’t really needed anymore in the human body. I spent a week in the hospital, which is so much longer than the recovery time for appendicitis, because I wouldn’t eat the hospital food, it was disgusting. Yes, they kept me in the hospital to make sure that I would eat!!! This recovery was very painful as they blow up your stomach with air to operate and when you wake up your stomach hurts a lot, like severe gas pains. Eventually, I was released and had to adjust to being in pain again! Two drastic surgeries in less than three months. Crazy!

Processed with VSCO with c2 preset

Making Progress

The end of March and beginning of April were still rough, but things were looking up. By the end of April, I was feeling better, moving around a lot more without my walker, able to bend down and get things for myself. My parents let me go back to school in May for a few weeks until the end of school. It was so bizarre returning to school, especially for such a short amount of time. They wanted me to finish my year, take my final exams in person and see my friends.

I remember my first day back was filled with so much gossip, information gets around my small school faster than wildfire. Apparently, many rumors were circulating about my disappearance. A few of them were funny. One was that I got a boob job. I KNOW RIGHT! To their surprise when I returned with a flat chest. Another rumor was that I was sent ‘back to my country in Afghanistan’. I’m not sure if I mentioned that I went to a very small, Catholic private school in a poor neighborhood that was filled with mostly white students, most who were from the countryside. If you looked even slightly different to them, they would joke about this stuff. I am white of Greek culture. This is was actually offensive to my culture and to the people of Afghanistan. I didn’t give them any attention. They were so ignorant as is and me fighting them would just end up with gaslighting my situation. They eventually found out it was because of my back, and since they couldn’t actually see my scar or wounds, I think it was hard for them to understand what I went through. So many people still didn’t understand even after I explained it to them and replied with ‘that sucks’ or ‘yeah I have scoliosis too’. I understand high school students don’t have the mental capacity to give someone sympathy or politely console others who have experienced pain. I found these comments very insensitive, but I couldn’t blame them. They didn’t know how to respond to me. They couldn’t understand. They have never been through this.

I understand that others may ~have or had~ scoliosis, but obviously it was so minute that it didn’t affect their life. Yet, here they are trying to relate to me? That didn’t make me feel better. It seemed like it was trendy to them. I got really sensitive about the subject matter and never spoke about it again. I thank the friends for trying to understand me and being by my side. I also realized who was actually my friend and who wasn’t. Life is really funny when you are in pain and your friends don’t show up or call you. Another hard lesson to learn so young. These realizations made me very cynical. It made me think twice about my friendships, be more cautious of the people that surround me, and more importantly to stick up for myself. Before, I never spoke for myself or anyone else. I was timid, shy, very to myself (still am if you first meet me), and very nice, like too nice. All of that had to change. It sounds so drastic, but I had just gone through something extreme and saw who was talking bad about me, who showed up for me, and who didn’t. I know people make mistakes, they’re busy, everyone has their own life to tend to, but a simple, sympathetic note or call would have sufficed for me. Maybe, I shouldn’t have taken it so seriously. It was high school after all, and none of that matters to me right now. I am an emotional person and I felt bad. I had every right to feel that way. From then on, I vowed to myself that if I can get through this back surgery, I could get through anything life through at me. I was stronger now, not weaker. I could do anything and I didn’t need anyone else beside me if they didn’t want to support me. This was a life changing moment for me. This surgery made me who I am today. I have no idea where I would be in my life if I didn’t go through this. I am very thankful for it, even though it caused me mental and physical distress.

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A few months later in the summer, my family and family friends decided to take a trip to Hawaii to celebrate my recovery (bougie as hell, I know) and let me have some fun since I had been stuck inside for four months. One of the days, my family friend and I decided to ride canoes in the ocean. I was cleared for physical activity and was told to live my life without any restrictions, just to listen to my body and maintain a good lifestyle.

We both went to the canoe guy and signed up on the beach. I grabbed the canoe and pushed it into the ocean as my friend was signing us off with the guy. He asked her about the scar on my back and asked if I was okay to ride the canoe. She said yes and explained that I had surgery earlier in the year. He replied and said something I will never forget for the rest of my life. “Wow, she is a warrior.” That statement meant everything to me because it is what I am, a warrior who has overcome an obstacle in her life.

__________

The next few years, living with my back became easier, less awkward. I lost a lot of feeling in my back from frayed nerves and scar tissue. Each year, I got more flexible, gained more feeling in my back, and strengthened my body. I worked out three times a week for three years. I wanted to support my back, grow muscles, gain weight, and stay healthy. I was sent to a gynecologist for my period issues and eventually fixed that as well. Below, I answer some common questions I have received in my lifetime as well as some elaborations to how I live my life today.

>I still suffer with back pain every single day of my life. Back pain, to me, has become normal. If I sit too much, lay down too much, or stand too much my back hurts a lot the next day. I am flexible with my spine in that I am able to do everything everyday activities require. I can’t do every single yoga pose on the planet. I am allowed to play sports – many kids who are dancers or gymnasts with scoliosis eventually go back to it. I have to be careful every single time I pick up something heavy and use good posture. Believe it or not, I can still slouch with my lower spine and my shoulders. It isn’t good for me at all, but it is still a habit even with rods down my spine. I can bend over and touch my toes, I can lean side to side, and even twist back and forth.

>Since being in architecture school the past seven years, my physical health has not been good. My back suffers more when I don’t keep a good physical schedule. I plan on going back to working out now that I have graduated with my masters. I stopped working out freshman year of undergrad because my sleep schedule and eating habits were awful and working out was actually hurting me more than helping me. I think a balanced life is important, it is just so difficult to maintain while being an architecture student. It is such a different lifestyle, one that needs to change, but I did what I could. I am still doing what I can.

>I can’t see my back scar physically. I sometimes forget about it. I am not ever aware that there is metal in my back, but I do feel it. When I am mentally aware of it, it feels very weird. It feels like someone is holding my spine with their hand through my back. It is very displeasing. Again, I don’t always feel it because I forget about it.

>My back looks different compared to others and that is okay. I used to be very embarrassed of wearing tank tops or strapless dresses that showed my upper back. I didn’t want someone to notice and ask about it and then I would have to find some explanation and I really didn’t feel like doing that every time I went somewhere. I used to have long hair to cover my upper back. It even took a while to be comfortable with being in a bathing suit. Now, I don’t even think twice about it. Scars are cool and I want to own mine.

>I ended up growing another two inches since my surgery, I am now 5’11”. Where did that height come from? I have no idea, perhaps my legs. It makes me wonder how tall I was actually supposed to be, like without this surgery, could I have been 6′ or taller? Both of my parents are really tall, my father is 6’2″ and my mother is 5’10”, my younger sister is about my height.

>If you have heard of weather pains from other people who have had metal implants in their bodies, they are definitely real. Every Winter, or any cold front coming in, I can feel it in my back. My back gets so stiff and aches. The first few years it would hurt a lot, I’d feel colder than normal, I couldn’t release the stiffness no matter what I did. I guess now I am used to that feeling every Winter because I barely notice that anymore.

>I have met some people with scoliosis who have had the surgery and some that did not. Our neighbor down the street had scoliosis, she is about 80 years old. When she was growing up the procedures were much different back then. They did not have the technology they do now to help people with this issue. She unfortunately could not have the surgery. She had endured so much pain her entire life. I look at her and my body aches. She is contorted, twisted, and so, so fragile. I hug her and I feel her pain. She visited me frequently and was happy that I could have this opportunity. I wish it was the same for her. I have met two young girls with the same surgery as me. I helped one of them with their recovery, which was a rewarding experience. It was heartbreaking to hear her pain, but she is doing great and living her life. This disease isn’t really common to hear, but I was surprised to hear that quite a few people do have it.

>Am I considered disabled? Well, technically yes, but I do not put it on any job application or tell anyone about it unless it is a doctor. I only notify someone if the activity I am doing has potential to hurt my back. I personally do not consider myself disabled. I am able to walk freely and do the every day necessities to live my life with no help and by that definition I do not feel disabled.

I could keep typing out everything that has crossed my mind with my journey, but this post would be a novel, it already is such a long blog post.

If you have any questions, please comment below.

Endnotes

If you got to the end, thank you so much for reading my story. I have been hiding this for so long and I have been reluctant to speak out about it, even to my close friends.

I thank you for being by my side and supporting me.

xx

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All photos are taken by Sophia Kountakis. Not sponsored, but some links may be affiliate links where I receive a small commission from your purchase.

outfit: Zara suit (similar top – similar bottom)

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