Scoliosis and Mental Health: My Lived Experience

(Content notice, discussion of suicide)

This year for Scoliosis Awareness Month, since it’s been 20 years since my spinal fusion, I thought I’d purge once and for all, not only all the factual details but the emotional and relational ones as well. I have a lot of thoughts and emotions about the experience, and some reflections that I’m only able to see now as I’m looking back. I’m naturally a pretty private person who doesn’t share deep things with others easily. Being a mental health therapist has pushed me well outside my comfort zone, but really it’s my personal experiences that shoved the lid off my Pandora’s box of emotions, forcing me to finally be able to be more honest with myself, and it’s still a constant struggle to be honest with others. This exercise of reflection is part of me working on that.

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In 2001, when I was 15-years-old, I finally resigned myself to ask my mom for help because of the pain I had been carrying all on my own for far too long. I just couldn’t deal with it anymore, and at last, the discomfort of showing my body to someone else and saying out loud that I was hurting outweighed the physical discomfort I was feeling. She, of course, was shocked, and likely horrified that her child’s body was so deformed and that she didn’t realize it sooner. I can’t even imagine. My mom is a total MOM and I’m sure she was somewhat traumatized by that and all that came afterward. From that second on she did everything she humanly could to take care of me.

Anyone who knows me knows I’m still somewhat modest, and I was incredibly modest when I was younger. But also, I was stubborn and independent, and the words required to ask for help might as well have been a foreign language. Whether it was schoolwork or dealing with intense emotions, I just wanted to do it all by myself, period. So the courage and nerve it took to work myself up was a lot. I have no idea what my 15-year-old self was expecting, but my mom’s response made me feel so relieved. I didn’t have to have that secret weighing on me anymore. All the unknowns turned into my mom taking action. She called our doctor the minute their office was open, and once we were there he took one look at me and made the referral to a specialist. By then, any other option aside from surgery would have been completely ineffective. My upper curve was 53 degrees and the lower curve was 58 degrees. My lungs and even my heart were being crushed by the twists of my spinal column, and if we didn’t do something drastic, it would have just gotten worse. I was never screened for the disorder, at school or by my pediatrician.

In the summer of 2001, I had 5 vertebrae fused together, using a steel rod and part of my ribs. The surgery took about 8 hours. I woke up with stabbing pain in my right foot, which was cold beyond what I knew was possible. Still, to this day my nerves are a bit wacky, and my right foot is constantly cold and sweats, while my left foot is so dry it peels and rarely feels cold ever. Because of this surgery we also found out another fun fact about me and that is, I’m allergic to opioids. So after a while, I was not only in excruciating pain, I was vomiting, and had a rash all over my body and it felt like it must have been under my skin too. My medication doses also got behind at some point and the medicine ran out while the pain caught up. I honestly thought I was dying. I wish I could put that experience into words somehow, but I can’t. I tried not to breathe, and I tried not to think, but I just knew that was the end. I was quite relieved when that wasn’t the case. Tack that up as my first traumatic experience, even though at the time trauma was something I thought only happened to soldiers in wartime. After a week, I was discharged home and spent the next couple of weeks in my mom’s downstairs bedroom recovering. People came to visit, and everyone was so nice. It meant a lot to me to get a gift of a small bottle of perfume or bracelet.

This is my spine post-surgery. I attempted to obtain copies of the pre-operation x-ray images a few years after the surgery but was unsuccessful.

I was also in my high school band, so the timing of the surgery gave me about 5 weeks of recovery before we went off to marching band camp. I don’t have clear memories of anyone talking to me about this, but not going to camp to learn my spot on the field for the show that year wasn’t something that even crossed my mind. I was going.

My mom’s report of these events: “I tried to talk you out of going or letting me go with you, but you were determined to go. I sat and cried in the parking lot for a long time after the buses pulled out. I was worried sick that you’d be injured or have a setback… I did try!

I was not going to sit and play on the sidelines. No way I was going to do that. I wanted nothing more than to blend in and sticking out was so dreadful I would have rather did what I did, and go to learn my spot, even if it hurt. And it did. And I was exhausted. But I was also taken care of along the way.

It may come as a surprise that once the other kids knew what was going on they were incredibly kind. Well, it may be a surprise if you weren’t a band nerd in high school. People were really nice. They checked on me and made sure I was ok. Our director playfully teased me, trying to cheer me up, and took care to ensure I was doing ok. If I needed a break to sit down, and I actually admitted I needed a break, I was able to take one. There was even an article in the local newspaper, with quite an unflattering photo of myself, but it was alongside a very thorough account as well as some kind words.

One person who worked very closely with the band stood out during this whole period, and they made a lasting impact on me. Years ago they had undergone a similar back surgery. They gave me the nickname, “Bionic Woman,” which I loved. That made me feel seen and special. They helped cheer me up and encourage me so many times. Just a passing stoic head-nod or a slap on my arm with their rolled-up drill papers was a boost I didn’t even know I had needed. They shared their own scars, making mine seem less weird and gross and all of it felt so much less awful.

My scar, along with my tattoo with the phrase frequently used in the scoliosis community, “bent but not broken.”

I won’t reveal too much to protect their family’s privacy, but that person has since died from suicide. I don’t think I ever really got to say thank you, or tell them how much their support meant and how it validated my experience and my pain. My heart breaks for what the world lost when we lost them.

We never really know what we mean to each other. We don’t know how our interactions with others can seep into them, and move around in their minds and hearts, and make their way into their lives and identity. Even the smallest extension of kindness can move inside someone’s core and extend for miles and miles.

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I’m not alone in my experience of scoliosis taking a toll not only on my physical health but my mental health as well. The interconnection and feedback between chronic physical pain and emotional pain is quite something. Until you’ve experienced it yourself, it’s impossible to fully comprehend. There are feelings of frustration and shame that come with having limitations and feeling “different.” There’s the constant feeling of being uncomfortable in and angry at your own body, which is just your baseline way of existing on top of the breakthrough, more intense bouts of pain. Looking every single day at your own deformed body that looks nothing like it “should” as a young teenager and into your adulthood just does something to you.

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Thanks to modern medicine, at 35-years-old, I’m currently healthy and functioning. Yes, I still experience a considerable amount of pain. My back and shoulders and hips hurt every day, and with age, some things are slowly getting worse. However, damage to my internal organs and walking abilities was avoided. If I lived 100 years ago I would currently be severely physically disabled. My life would have been impacted even more so. It’s scary to think about how if I had been alive at a time in the not-too-distant past, I may not have even lived this long. Scoliosis can progress to be severely disabling, and I was well on my way there. It’s painful to think about how there are so many others who have had to live through so much worse than myself. I truly feel fortunate.

Summer 2021

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One of the most important life lessons I learned from being in the band was that I can do hard things. Marching band was hard for me on a good day, and post-op it was even harder. But I wanted to be there. I personally saw no other option other than to go to camp and learn my spot on the field, nothing else was even within the realm of possibility for me. However, just because someone can do something, doesn’t mean that they should have to. As an adult looking back in hindsight, maybe I should have just sat that year out, but at the time I genuinely didn’t want to. And that’s what matters. People should have the option to push themselves. People shouldn’t be required to do so just to survive.

In this last year, the dialogue around how we treat the disabled has hit home, and it has hit home hard. I am someone living with both physical and mental health disorders. Do I only matter because those disorders have been treated? Do I only matter because I can pass for normal, and keep a job? What if I didn’t? Or, what if I wasn’t mobile or mentally stable enough to maintain a job? What if my status changes in the future?

I can’t even imagine trying to recover from my surgery, and not wanting to go back to something as demanding as marching band, but being forced to. That’s what we’re doing to so many disabled people with our broken current system of disability benefits. I can’t fix all the world’s problems, but I can use my voice and say something.

In the 20 years since my back surgery, not one person who has learned of my experience was unkind about it, dismissed my account in any way, or even hinted that whatever physical limitations and pain I still have aren’t valid. This happens on the regular when it comes to my mental health, and I think it’s fair to say this happens to virtually everyone who experiences a mental health disorder. I’ve lived with various mental health issues since childhood, and I’m beyond fortunate to now have some really supportive people in my life who get it and validate and encourage me.

I’ve also tried having conversations with people who were really important to me, who completely dismissed me. They made me feel that I was suspect or being dramatic for sharing what I did. This made me feel like I wasn’t real.

The kindness I received after my back surgery essentially conveyed to me that my pain was real, that people were sorry that I experienced what I had, and that I mattered. Did all that support cure me? Of course not. It did, however, keep me from thinking for even one second that my pain wasn’t real. Validating my pain validated me, my literal existence. I wasn’t worried that my experience wasn’t “that bad,” or that it was “all in my head.” I was able to focus on my recovery without wasting any energy second-guessing reality.

I’m just one of probably millions of people with a mental health disorder who have been crawling up metaphorical stairs of surviving life with a broken leg for so long that I didn’t know anything else was possible. The events of 2020 consequently gave me time to face myself, my mental and emotional pain, as well as my dysfunctional relationship patterns, in a way I’ve never allowed myself to before. It didn’t just make some of my mental health symptoms worse, it drew out things I’d been keeping stuffed down deep out into the open. My demons, doubts, insecurities, and uncertainties all had my undivided attention. It was quite a battle at times, but I’m proud of myself for fighting it. This has all changed me in ways I likely can’t truly comprehend at this time. I know I’m not alone in experiencing such an awakening over the last year.

I’m also left with more questions than I have answers. It’s honestly unsettling.

We already know how to take care of each other, so why don’t we? Why do we have to have brain scans to “prove” people’s accounts of their mental health experiences? Why don’t we take hot meals to people who’ve scheduled their first therapy session, or call people after their psychiatrist appointment to tell them we’re thinking of them and hope it went well? Why can’t we just actually believe people? Why is it so hard to just believe our own experiences? Why is it so hard to ask for help?

Why was my experience of one disorder and the recovery process so vastly different from that of another?

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I hope more people will learn about scoliosis, and if you are a parent or have children in your life, make sure they get screened yearly, especially around puberty and growth spurts. Early interventions can make an incredible difference, and awareness is key for people to be able to spot the signs early.

Please learn more about mental health and practical ways to support people experiencing thoughts of suicide and other mental health and substance use concerns. There’s no us and them when it comes to mental health. No one is immune. I’m also learning more about how people with (dis)abilities are being neglected and harmed by our current systems. I hope I’m not alone in this endeavor. Ableism is so heavily woven into the fabric of our lives. The expansion of financial disability benefits and healthcare services for everyone is long overdue. Access to care means access to existence. I don’t mean this in a way that’s just “staying alive,” but by being able to truly live and experience life without the burden of avoidable suffering.

Also, I beg anyone who’s reading this, if you need help, ask for it. Yeah I know I am preaching to the choir here, this is one of the hardest things for me to do still to this day. But please, if you are in pain physically or emotionally, tell somebody. Please. We need you to stay with us and we need you to be you. You can’t be you if you are white-knuckling it all day long either. Just because others have worse cases of scoliosis than myself, does that mean that I didn’t need surgery? Hell no it didn’t. If you are dealing with any level of mental or physical health difficulties, please talk to someone you trust, and seek professional help if you think you could benefit.

I’m hoping I’m not alone, and that many more people also want to live in a world that’s more kind than not, where community care is a reality, and where it’s just the default way of operating that mental health is just as real and important as physical health.

I’ve always believed that the world is what we make of it.” — Contact, based on the book by Carl Sagan

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Learn more about scoliosis:

Scoliosis Research Society

Scoliosis Advocacy Network

Curvy Girls Scoliosis Foundation

National Scoliosis Foundation

Back to Healing

Pilates With Allie

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If you or anyone you know is experiencing thoughts of suicide, please contact the National Suicide Prevention Lifeline by calling # 1–800–273–8255, or text “HOME” to 741741 to reach the Crisis Text Line.