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A 'Cheat Sheet' for When You Love Someone With Scoliosis

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Let’s face it: scoliosis can be a real pain in the ass sometimes. The pain associated with it can be mentally draining at times, and physically demanding most of the time, and unfortunately, it changes day-to-day, making it extremely emotionally taxing for the people living with it, but also for the people who love them.

Sometimes, situations have to be avoided, needs need to be accommodated, plans change, and ultimately, pain takes top priority. It’s all these factors that can make scoliosis understandably exhausting for everyone involved. So if you love someone with scoliosis and you’re having trouble dealing with it, here’s a cheat sheet to help you get through it.

1. Consider yourself lucky to know them. They are probably one of the toughest people you will ever meet. Let me break it down for you: It’s pretty easy to get caught up on the small things. You know, all the pain and issues associated with scoliosis, and the not-so-fun, unavoidable spinal deterioration can be a real mood-killer. However, you know and love one of the toughest people alive. They are determined, dedicated, and full of strength. They have dealt with agonizing pain and discomfort for years with a smile on their face. And your job is to support and love them for the years to come. You are pretty damn lucky in my book. Not everyone knows and loves someone as tough as you do.

2. Remember they are more than just their scoliosis. I know that sounds pretty obvious, but people have a tendency to become blind-sided by any physical limitation. It’s as if once they know the person has an invisible disability, they have to walk on eggshells. Trust me, it’s weird, don’t do it. The person you know is a complex and wonderful human being and doesn’t need to be labeled by one small characteristic. They are so much more than this one trait.

3. Sometimes even the smallest things can be exhausting. Pain is exhausting and completely draining, and if you are not in pain, it’s sometimes hard to remember just how tiring it can be. Pain comes from the body constantly fighting its issues, and it is that internal fight that leads to exhaustion. Everyday situations tend to be a lot more draining for people dealing with pain all the time. So next time you are pushing your friend with scoliosis to do something or go out, and they don’t want to join your proposed adventure, just remember that they may actually be really tired.

4. They are well aware their pain doesn’t always make sense. Pain doesn’t always accommodate pre-existing plans. Being aware of this might make it all easier to deal with. One of the most frustrating aspects of scoliosis is the difference one day can make. One day, they can be running a marathon, and the next day, they might not want to move. Pointing out what they were able to do yesterday, but are having trouble doing today, doesn’t help at all. Instead, try being supportive and understanding of their needs.

5. Do not ask, “Are you OK?” while they’re dealing with a muscle spasm. When you see someone clenching for dear life because they are trying to survive a muscle spasm, do not ask if they are okay. To be frank, they probably feel like their body is entirely giving up on them. So instead of asking them if they are OK, try saying something helpful, like “remember to breathe.”

6. They appreciate you being there. Let’s be honest, we all know scoliosis sucks sometimes. It’s hard for everyone involved, including the people supporting them. But your support doesn’t go unmissed; they hopefully recognize all you’ve done for them, and they are definitely not oblivious to what it takes to stick by them. So on behalf of my fellow people living with scoliosis, I would like to personally thank all those supporting and loving a person with scoliosis. You are all the best!

7. Don’t get sad if you feel ignored; it’s probably not intentional. It’s very challenging being uncomfortable and in pain most of the time. Chairs are not made for people with deformities or people with rods in their spines. So if you are in the middle of telling a story and you notice they are twitching and spacing out, remember they might be dealing with something internally that they are not vocalizing. It takes immense concentration to be able to ignore discomfort and pain and focus on a story or conversation. They want to be a part of the conversation. They want to be involved in what you are saying. They’re not ignoring you; they’re just trying not to break down right there in front of you.

8. They might not know how to ask for help. They have probably dealt with their pain their entire life; they know what they’re doing. But even the toughest people need a little help sometimes, and that’s not always easy to recognize. As a support system, remember to be available so when they do reach out for your help, you are always there.

9. It’s totally OK to be frustrated. Part of loving someone with scoliosis is taking on some of their frustration. There are times you may want to scream, to cry, to be completely upset that there aren’t more solutions available for people living with scoliosis. You may go through days where you will wish it was you instead of them. You may want nothing more than to change their situation, to fight with every orthopedist that provides zero solutions, because you will want nothing more than to make their life easier. And it can be incredibly frustrating knowing that there is very little you can do. Just remember, you are vicariously dealing with scoliosis, so it’s OK to be frustrated. It’s OK to be upset.

10. Remember they don’t always see their scoliosis as a limitation, and neither should you.
The pain sucks. The discomfort is challenging. The deteriorative nature of the condition can be debilitating, but just because it’s challenging, that doesn’t mean their life is over. Scoliosis has likely influenced the person they have become. Remember they are who they are — the incredible person you love — at least in part because of what they’ve been through.

So there you have it, the ultimate cheat sheet. You’re welcome. Keep this list in mind when you’re having trouble being the support person — it might help you survive those tough days.

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13 Things No One Told Me About Having Scoliosis Surgery

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Seventeen years ago, I found myself dealing with idiopathic scoliosis and two major spinal curves: one was 74 degrees and the other was 55 degrees. It was the severity of my condition, and the fact that I really had no other option, that pushed me to undergo surgery. For so many reasons, having surgery was the best thing I could have done, but even still, there are a few things no one told me.

Here’s my list:

1. When the morphine began to fade, I freaked out.

By the time I had surgery, I had dealt with spinal pain for a good three years; I was convinced I could handle any pain. I thought I could deal with anything. Boy, was I wrong. It hurts. It hurts like a sonofabitch. The level of pain was astronomical. As soon as my magical morphine button was taken away from me the devil itself came out of me. I was seriously freaking out. I was not in control of my body, my mind, my pain, and it was tough. I couldn’t sleep. I thought I was going to die from the pain and discomfort, and it got so much worse before it ever got better.

2. Death by sneezing.

Sneezing, I think, was one of the worst things that happened to me after having surgery. Before I had surgery, I had this super vicious, lion-like sneeze. I would sneeze and you could definitely hear it. But after surgery, sneezing felt like someone was sawing at my ribs and lungs. It. Was. The. Worst. Feeling. Ever. Naturally, to avoid the horrific pain I felt every time I sneezed, I simply held it in as much as possible, which led to my current mouse-like sneeze. It is so pathetic most people do not even realize I am sneezing.

3. I had to go #2 before I could go home.

It is a terrifying experience trying to poop after having major spinal surgery. I felt absolutely certain I was going to die on the toilet. But I couldn’t leave unless I went, and my doctor was super intense about this, too. It was particularly difficult for me. I get so stressed out when I feel pressured.

6. Then they pulled out the f*cking arterial line from my neck.

I don’t recall my doctor ever mentioning, “Oh, by the way, we are going to insert this giant tube in your artery and then remove it once you are fully awake.” Lucky, for me, I was totally passed out when they put it in, and in fact, I didn’t even realize it was there until the time came to take it out. I remember the nurse telling me that I shouldn’t feel a thing. Yeah, right. As she tugged and pulled it just kept coming up. It was like a worm that had started attaching itself to my artery was being ripped out. To put it bluntly, I  definitely felt it.

5. I wasn’t as good as new.

Prior to surgery, I had this idea that I would no longer be curvy and that I would come out like a brand new person. I thought the surgery would correct the curve and make me straight, just like everyone else. Unfortunately, surgery didn’t change the fact that I have scoliosis, it simply tried to correct it. Despite the fact that I had four ribs removed and bone graft added to my rib cage, I can still feel my curve. Sure, this made my deformity less visible, but it didn’t change the way my body felt. Even though I couldn’t see the deformity, I still felt it, I still feel it, I am still aware of how it affects my body every single day.

6. Pain never went away; it’s always there.

I remember thinking I would be pain-free after surgery. Just like I was convinced that surgery would fix all my problems. The truth is, surgery doesn’t fix everything. It makes certain things better, but pain is definitely not one of those things. Do not get me wrong, the pain changes, and in some ways it is better, but unfortunately, surgery did not fix all my pain, it only changed it.

7. I had to say goodbye to balance and coordination.

Waking up after scoliosis surgery was incredibly mind-blowing. All of a sudden, I felt like my body was foreign, as if I underwent the procedure and woke up to find the surgeon had given me a new body. It was one of the strangest feelings I have ever experienced.The next day, I felt like Bambi on ice. I was so wobbly and uncoordinated. My body didn’t respond the way I wanted it to, and I just kept feeling like I was going to tumble over. It was so surreal. Unfortunately, though, I never really did regain my balance and coordination. I am still one of the clumsiest people ever.

8. What does it even mean to be flexible?

I was very flexible as a kid. I had no problem doing a split, and backbends were nothing for me. But after surgery, all that changed. Titanium and a few screws killed all of my flexibility, and I don’t remember what it feels like to be flexible.

9. I felt like a broken record.

I have no idea how many times I have told my story. I’m pretty sure it has to be thousands by now. I wish I could say I am use to it, but I am not. I don’t dislike telling my story, but at a certain point it starts to get slightly repetitive.

10. People do not know what scoliosis is.

Scoliosis affects an estimated 7 million people in the U.S., yet there are still people out there who have no idea what it is. I am happy to explain it to anyone who doesn’t know what it is, but I wish there was more awareness about a condition that is extremely common worldwide.

12. There are things I shouldn’t do.

I have titanium rods and screws alongside my spine. This means I am at a risk of puncturing any one of my organs if I have a serious accident, so as much as I want to do high-impact activities, I shouldn’t. I have to be mindful of my body and aware of my own limitations.

13. Injuries take forever to heal.

I am 30 years old; I am not a spring chicken, but I am also not 85. Yet, my body does not heal at the rate I wish it did. I fell down concrete stairs last year, and I am still trying to recover from the impact of that fall. Due to the rods and screws in my spine, any impact or injury can cause internal bone bruising, which takes a long time to heal. Trust me, I don’t recommend injuring yourself after having scoliosis surgery.

And that’s a wrap! Did I miss anything? Let me know by commenting below!

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Thinkstock photo by Hin255

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What Nobody Told Me About Scoliosis

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I was diagnosed with scoliosis at a rather young age. I was 7 years old when I received my first back brace. I have Marfan syndrome; scoliosis can be a characteristic of this disorder, although you can be diagnosed with scoliosis without having Marfan.

No one told me I would need to buy all new clothes. My mother had to go out and buy all new pants and shirts for me. My clothes were too small to fit over the brace. It should be something completely obvious, but it is probably the last thing you worry about until you receive a brace.

No one told me how uncomfortable the braces are. It literally feels like I’m living with a hard plastic tube around my entire abdomen.

No one told me what kind of pain I would experience after surgery when I had rods placed. It is horrible pain. It took me months to get back to my pre-surgery self. It was the worst surgery I have ever had. I can compare it to heart surgery, foot surgery, and two c-sections, because I have experienced all of these, and still feel confident that without a doubt my back surgery was the worst.

No one told me what life will be like years later after having rods placed. I have had my Harrington rods for almost 20 years. The first 10 years I had little to no pain. The past five years have not been so pleasant. Scar tissue and arthritis have wreaked havoc throughout my back. I am in pain every day.

Scoliosis can cause major medical damage if left untreated. I would love to live life without the experience of scoliosis and back surgery. However, I do have this disorder, and I was able to have it properly treated. I am extremely grateful I live in a time that the capabilities to treat it exist.

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Image via Thinkstock Images

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Disabled Artist Rebecca Dann's Self-Portrait Wins the Praise of Stephen Hawking

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Not many people can say esteemed theoretical physicist Stephen Hawking finds their work “truly inspiring.” That is, unless you are Rebecca Dann, a 22-year-old artist from the U.K.

Dann submitted her self-portrait, titled “I’m Fine,” to a competition hosted by U.K. organization Disability Talk. The portrait shows the curvature of Dann’s back, the result of living with kyphoscollosis.

Rebecca Dann's self-portrait. Shows a young woman looking at the camera. She is topless with her back, which is curved, facing the camera.

“I was always trying to hide my back but I got to a point in my life where I questioned why I was constantly hiding who I was,” Dann told The Mighty. “I realized that my disability wasn’t going to go away and I had to own it rather than hide it. So I did my photography project and whilst doing it, the competition came up and I wanted to try and get my portrait out there because I wanted people to see that it’s okay to be who you are and yes sometime’s life is unfair but sometimes when you can’t change it you have to own it.”

Her stunning self-portrait won first place in the competition and the praise of one of the competition’s judges, Stephen Hawking, who called the portrait, “truly inspiring.”

Stephen Hawking and Rebecca Dann

Meeting Hawking, Dann said, was an incredible experience. “Honestly, I think I am still a bit in shock, even after meeting him I feel like a deer in headlights, like did that really just happen,” she said. “When I first found out he had even seen my photo let alone commented on it saying it was inspiring I was just unable to really comprehend what had happened. When I met him, I spoke to him about my photo and it was amazing because you can really see that he is listening and that meant a lot. He congratulated me at the end of it too, which just meant a lot.”

Rebecca Dann painted white standing like a statue.

Dann’s self-portrait is part of a series of artwork she’s created. The entire series is titled, “I’m Fine,” a play on how Dann feels when people think she is limited by her disability. “People ask me questions and that’s great but I always get people saying or asking ‘Can I hug you?’ or ‘I’m scared I will break you,’” she explained. “I have to keep saying ‘I’m fine.’ I want people to know that just because I have this disability, it doesn’t mean that you can’t speak to me, touch me, be around me. I won’t break. I’m just like everyone else, I’m fine!”

Photo of Rebecca Dann looking at the camera.

As a visual artist, Dann put a lot of thought into how she would represent herself in her self-portrait. “I didn’t want the focus to be taken away from my back because that was what I wanted to show the most,” she said. “I took some photos where my face was out of shot and it was just my back in the photo, but then I felt like that just showed me hiding away again and I didn’t want that. So I took a photo where I was looking straight at the camera. I wanted people to look at me and see me showing my back with pride. Not being afraid of it.”

Rebecca Dann in a wheelchair.

Dann hopes her artwork will help others start a conversation about disability, stating she wants people to interact with the disabled community just like they would anyone else. “I also want people to stop judging someone before they know them,” she added. “It’s something I struggle with a lot, people judge me based on the fact I have a bent spine and use a wheelchair, they think that I’m different and then are shocked when I speak to them and they realize that actually I’m just the same as everyone else.”

You can see more of Dann’s artwork and the rest of her “I’m Fine” series on her website.

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What I Would Tell My 13-Year-Old Self After Having Scoliosis Surgery

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I was diagnosed with scoliosis when I was 13. I wanted to hide away in my little turtle shell of a back brace and be invisible. It can be so scary, especially at that age, to be open about anything that makes you different. I felt as stiff emotionally as I did physically. In the beginning, I was a shell of a person. I hid my brace. It was a street fight to get me to wear it (my poor mother!). Some people called me “scoli” or they would knock on my back brace and run away.

Here’s what I’d tell myself, five years on:

Dear 13-Year-Old Self,

Are other kids’ spines shaped like their initials (S for Stephanie)? No. Own it!

So what if kids make fun of you while you put your back brace on in the locker room after gym class? Locker rooms are weird for every middle schooler.

woman holding her brace

Don’t avoid hugging people or worry about them being weirded out by your back brace. Embrace the brace. Tell people to punch you in the stomach and that you have abs of steel. Don’t worry, guys are super into the damsel-in-distress thing.

The friends you laugh and cry with about body insecurity are the friends you’ll laugh with and cry with forever. Keep them. Don’t fret about being short. You’ll grow 2 inches after puberty when you get back surgery in your 20s.

Don’t do drugs to fit in. You’ll have more than enough stories to tell about hallucinating on your pain meds post-surgery. People spend a lot of money on Spanx and corsets to suck it in. So, I mean, most of yours was covered by insurance. Think of your back brace as a history lesson of 16th century women and fashion.

A photo of Stephanie's back after surgery
Stephanie’s back after surgery

All joking aside, yes, bullies are awful. You’ll have pain. You’ll ask why. You’ll feel like an alien from outer space and that no one understands you. Don’t let it get under your skin. Most importantly, turn your wounds into wisdom.

Sincerely,

You

A version of this post originally appeared on BoredPanda.

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What I Can Control as a Person With Scoliosis

Alethea and her dog enjoying the outdoors.
Alethea and her dog enjoying the outdoors.

I was 11 years old, and my school did a scoliosis screening. I was singled out as possibly having one leg longer than the other, and referred to the scoliosis clinic. We were entirely unfazed as my sister and mother both have mild curves, and we assumed I would get a lift in my shoe like my sister and go about my business.

The visit was scheduled for the better part of an afternoon in order to facilitate X-rays and a reading as well as a visit with the surgeon.

I had been goofing around in the room, bored and tired of the rigmarole, but then when the doctor entered our room he was grim and serious. The whole atmosphere changed and I intuitively sat still to listen, not really grasping what he was saying. He wrapped up his speech in which he broke the news that I would need a brace, and asked me if I hated him. I had only half listened after his first few lines, and the only reference I had for a brace was an ankle brace, so I just smiled and shook my head.

We made some more appointments and left the office. My mom was as grim as the doctor had been, which worried me.

The next appointment was to get fitted for the brace. I don’t remember it clearly, but they made a cast of my body and measured me all over. It was awkward and embarrassing to have strangers handling my pubescent body in such intimate fashion, and I figured now I knew why that doctor made it all sound so serious. That day was no fun at all. We spent prolonged periods awaiting more X-rays and different hoops to jump through. I was frazzled to the point of tears when my mom told me, “When you’re at the hospital you need to have patience.” And we giggled away some of the tension at her unintended pun.

A couple of weeks later we returned again for the fitting of the actual brace, and suddenly everything was clear. The Boston style brace I was squeezed into was miserable. Stiff and heavy with none of the contemporary lightweight materials, cutouts or styling, I felt like I was suffocating with the hard material wrapped around my whole rib cage. Then I was sent up to a room, and introduced to a nurse who was the epitome of the old battle ax. Just when I thought it couldn’t get worse, visiting hours ended, and in early 80’s fashion, my mom was told to leave.

Thankfully much has improved since then.

My own daughter was diagnosed with scoliosis when she was 14, and it was only then that I realized how traumatic the experience had been. Her scoliosis is a lesser degree than mine, so she doesn’t require bracing, but upon seeing her X-rays I nearly vomited.

I worried that she, too, would have to go through bracing, and I knew that the fitting process was only the beginning. I couldn’t bear to imagine her peers knocking on her brace as mine did, and her having to respond with the expected laugh, all while feeling as hollow as the knock sounded.

I’m aware that I got off easy; at least I didn’t require surgery, which many people do.

I still live with the challenge of scoliosis. I start physical therapy again this week; I’ve lost track of how many times I’ve gone. When I graduated from the scoliosis clinic I was assured that my scoliosis was a closed chapter and it would plague me no more, but 21 years later, I live with chronic pain, and several bulging discs that I try to keep in line enough not to require surgery.

But I don’t let it stop me. Someday maybe it will, but until I am physically incapacitated, I will keep moving. My philosophy is that I would hurt whether on the couch or out running trails or hoeing my garden, so for as long as possible I choose the latter, which actually eases the pain and helps me cope.

I don’t talk about it much; even my husband can only estimate my discomfort by how often I ask him to crack my back, which usually doesn’t work anyway because the muscles are locked up.

I am convinced that out of all of this, the only thing I can control is my attitude. So I focus almost entirely on that; it’s remarkable how much it helps.

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