Living with Scoliosis
*Takes deep breath*
This is probably the most vulnerable (and longest) post I will ever write. Honestly, I didn’t plan on getting this personal with you guys for a while, but I’ve recently felt encouraged to just write this blog for a couple different reasons.
One of those reasons is that June is Scoliosis Awareness Month. If you don’t know what it is, scoliosis is a medical condition in which your spine has a sideways curve. It can curve like an S or C. Mine curves like an S. Mild scoliosis is actually pretty common – I’m sure a lot of you reading this can relate to me right now. Women are EIGHT times more likely to have it than men, which is very interesting to me.
Second, this year I have become a new person inside. I’m not sure what has awakened in me, but I finally feel free to be myself. I’ve stopped hiding and trying to look cool, and started to just LIVE more without constant worry.
As a mom, I’m always working toward making sure that Q is a secure, confident female. It might sound basic, like “Oh, of course you don’t want your daughter to be insecure, none of us do,” but being insecure is a real problem for me personally. And I want to get to the root of it, so I can make sure Q & A have the emotional tools they need to always be the confident, strong-willed kids they are now!
I wonder, at what age do our insecurities start to creep in? In my deep soul searching, I blame my back. (I kind of always blame my back.) My dad’s favorite quote, one that I live by as well, is “Blaming others keep us helpless.” Well, blaming my insecurities on my back, it just makes me feel better…
Anyway, here’s the a short version of the story behind all my curves.
My Diagnosis
One morning in first grade, I faked sick. My mom allowed it, but she took me to the doctor anyway. I’m not sure if it was to teach me a lesson or what, but we went. We didn’t know at the time, but that appointment would change our lives forever.
While the doctor was listening to my lungs, he said “Wow, Ale can you stand up and touch your toes?” I did, and all of a sudden I had a hump. WTF! Even as a first grader I think I probably thought WTF. Where did this come from? How did no one notice I was THIS crooked! MY BACK WAS NOT NORMAL.
This appointment was followed by SO MANY appointments. I got fitted for my first back brace that same week and was living in a back brace by the next week. Then I had monthly back appointments to get X-rays and monitor the progression of my curve.
I remember very clearly how well my mom held it together at the very first appointment. Both of my parents held it together for me so well throughout the whole experience. I was never treated differently by them. My brother still farted in my face, and my sister still made me play the Baby-Sitter’s Club member that was my last choice. My parents still let me sleep in the Bud Light beach tent I set up in my room, where I lived for about 6 months. Life was no different.
They loved me and all my beautiful curves. They loved my brace too. My family really made sure to treat me normal and that’s something I am so thankful for. If I was in my mom’s position, I don’t know how I would handle it. Mom, if you are reading this, thanks for holding it together for all of us…all the time.
Timeline
First grade – Diagnosis
Third grade – I gained my “back brace sister”
Sixth grade – We both had a spinal fusion surgery a day apart in December 2000
Summer ‘01 – We were FREE from our braces
18 years old – First breast augmentation
31 years old – Second breast augmentation
In first grade, I was diagnosed and fitted for a back brace. I wore my back brace everyday ‘til the summer after sixth grade. The brace helped contain the curve ‘til I had a growth spurt around fifth grade. When my degree curvature reached +48 degrees and was progressing every appointment, they decided surgery would be best option. I had a spinal fusion on December, 20th, 2000. During a spinal fusion, the doctor uses titanium rods, hooks, screws, and wires to correct the spinal curve and secure the spine in a straight position while the fusion heals and becomes solid. I was two inches taller after surgery when they stood me to do X-rays!
First grade – The Back Brace
Ahh, my first back brace. I’m not going to lie, I was kind of excited. Getting fitted was interesting. They balanced my body on a 3-inch strap and then I was wrapped in cast material from shoulders to butt. Once it hardened, they cut it off with a power tool. If you have ever had a cast, you know that it tickles/itches so bad and is also pretty scary. I wore my brace 24/7. The only time I was allowed to have it off was when I was in water. I lived in water during the summer so I didn’t have to wear my brace. I had to wear an undershirt, back brace and over shirt.
I had three braces total, over six years. The worst one was my last brace. It was sixth grade, so a few girls started developing breasts. I was NOT one of those girls, but the people making the brace were so kind and sensitive that they decided to add little boobs for me to grow into. UM, NO. I was mortified. They were tiny, but I could not be known for “stuffing.” I remember thinking, “This is absolute bullshit, everyone is going to think I stuff.”
Third grade – Gaining my back brace sister.
In third grade, the best thing ever happened to me. Someone else had scoliosis at my school and was also getting a back brace! And it happened to be my arch nemesis. She could do more flips on the bars, do the splits better, and she had the attention of the hottest boy in third grade. When I found out she was getting a brace, we became friends. Best friends. She is still one of my best friends to this day. Her mom actually sent me these photos. Her family is my family.
We went through everything together. We had the same doctor. Our families were so close that we started scheduling our monthly appointments at the same time. Then we had surgery one day apart in December 2000. Our rooms were even next to each other in the hospital. I refused to meet her halfway so she came to my door. LOL I was the worst patient. I can’t believe this is our 20 year anniversary! I’m so grateful to have gone through this with my best friend.
Okay, full honesty…we were also mean. Maybe even back brace bullies. If you went to Holiday Park Parks and Recreation Summer Program in the late 90’s…sorry. But we had to protect ourselves okay. OKAY, no, that’s such a cop out. We were freaking mean girls at such a young age. I don’t know what gave us the right, but no one stopped us. Maybe everyone felt bad for the back brace girls. Maybe it was because at the beginning of sixth grade, I wore glasses, had a full arm cast (I was running to hug my bf at parks & rec, tripped, fell, and broke my arm in front of everyone), braces, and a back brace. I hope your mental image is as good as it gets. LOL! Becky, I hope you are laughing right now, because I am. Becky is possibly one of the best, kindest people on this planet. She also watched me run to hug that guy and break my arm. :’) We were not bullied. People were very nice to us, probably too nice.
We are mischievous, HILARIOUS, assholes. Love ya boo!
Being Bullied at an Older Age
I didn’t get “bullied” about my back ‘til college. Maybe the people in high school heard about our back brace years so they sympathized with us more, or maybe they just feared the wrath of the back brace bullies. Hehe I am laughing, I hope you are too.
The first time anyone ever said the word “hump” (to my face) was in college. It was this girl that liked the guy I was seeing at the time. She changed her MySpace headline to “By golly she’s got a hump,” the day after my sweet boyfriend (NOT) introduced to me to her. For the record, her nickname was “Guch.” That’s the area between the balls and butthole, sweetie. I would rather have a hump than a nickname like that. Wow, I think I’ve been waiting the last 13 years to say that. If you are reading this, sorry, no hard feelings, because in all reality my nickname was/is A-Hull. But that’s because my name was Ale Hull! I can’t make this stuff up.
The next time I was bullied was quite possibly one of the worst days of my life. I love music. I am an adult emo kid. I’ve been to hundreds of shows in my life. A “show” is a concert for you normies. Well, I remember a lot of shows perfectly. But this one I will never forget. I had no clue what I was walking into. There was a bully in the music scene. I’ve never met a meaner/scarier person in my life. He and his crew threatened a lot of us in the scene. He brought guns, oinked at girls who weren’t overweight, spit in faces, the list goes on. He was really awful to some of my best friends. But I had somehow stayed off of his radar, until one day. I made him mad by not responding to a MySpace bulletin. EYE ROLL.
I walked into that show so happy to see all my friends and jam out to some rad local music. As I am standing there, getting ready to enjoy the first band (lead by that guy), they dedicate their music set to “the hunchback of Duke City.”
All right, I’m blonde AF people. I’m happy AF, and I was there with my best friends for a good time. So it’s not registering with me that he is talking about me. I’m just over there still jamming. LOL. When it does register that they’re talking about me, that he is referring to ME as “the hunchback of Duke City,” I see red. I walk out. I don’t know what to do.
Everyone leaves, and I walk across the street. I’m followed by this guy and his crew. When they walked up, everyone scattered like roaches. I was left standing there with one of my best friends, who is the nicest, doesn’t want any trouble, kind of best friend. She stood strong by my side while this guy and his crew belittled me and tried to intimidate us. Oh boy did I unleash on them. I told them everything I felt about how he and his dogs treated people. I told them that if they wanted to hurt me, I was standing right there, and to put their money where their mouths were. I think that was the first time he didn’t know what to say.
That was the day I decided that I would never let anyone hurt me about my back again. That was the day I became proud of my hump. Well, not really that day. We definitely left and went back to where I lived at the time and got wasted and cried. It’s not something a lot of people saw or knew about. And this guy just told EVERYONE about it.
Self-esteem with a Hump
I never realized how much my back affected me until later in life. I was/am a prude. Sorry babe, word’s out. HAHA it’s hard for me to ever be serious. This is my defense mechanism – to start joking and making fun of myself.
Okay, back to seriousness. One of my friends recently asked me when I had my first kiss. I didn’t have my first kiss ‘til I was 17 years old. SEVENTEEN, PEOPLE. Plenty of boys wanted to kiss me and OMG I was dying to kiss them. That was not the problem. Kissing leads to touching. I didn’t want anyone to touch me and feel my curves and know what my body was actually like. This did however work out great for me, because the only name people could actually call me was a bitch. You can’t call the virgin a slut. You just sound dumb. I was a virgin for life. If I didn’t have kids now, I’m sure some people from my past would bet that I’m still a virgin. Haha.
I went to an embarrassing local modeling agency from seventh to ninth grade. What a joke. I did learn a lot of etiquette there, so that’s nice. I use it all the time being a stay at home mom. LOL. All jokes aside, there was a big casting call with an agent from Europe and I made it to the final round. I had probably practiced my runway walk for 24 hours straight for this audition! I was so nervous. I wore my best outfit. I really wish I could remember what it was, because I’m sure it was hilarious.
Anyway, I went for it, and I GOT IT. They wanted to send to me Europe to kick off my modeling career. OMG! I was going to be model. Finally, being 10 feet tall and grossly skinny was paying off for me. Well, after they sent my 360 pictures to the Europe agency, I was turned away. The first agent hadn’t noticed my back and decided that it wouldn’t be smart to invest in me because my chances of being signed were VERY low.
I was bummed, but that made it easier for me to quit that stupid place and stop pursuing a career as a model. These days some the most famous supermodels have scoliosis and are actively raising awareness about it. GO TEAM. I’m actively putting things together to start my own scoliosis awareness initiative. I want to help younger girls learn to love their curves, because it took me WAY TOO LONG.
One Breast Implant
Yes, you read that right. My hump is located on the right side of my back. My rib cage twisted with my spine, creating my hump. I’m very crooked. Before the surgery, one of my legs was longer because of my hip placement. So, my leg is not actually longer, but the way my spine curved affected everything. And by everything, I mean EVERYTHING. During puberty, my right breast did not develop. My chest cavity sits further back on my right side, so I basically did not have a breast. My left side was a C-cup for reference. Needless to say, having a hump and one boob can really take a toll on your sexuality and self-image.
For my high school graduation present, my parents got me a breast implant. My mom took me to a couple different consultations. The first two doctors would have taken our health insurance, but of course the doctor I felt most comfortable with did not take insurance. My parents understood completely. I had my breast augmentation the month after graduation. I got my first real boyfriend one month later. LOL, he was a prick then, and a prick now. *Crying laughing*
Two Breast Implants
After being pregnant twice and breastfeeding both babes, something needed to be done. I had the opposite problem now. My right side had a perky, sucked dry implant, and my left side had a completely deflated, sucked dry, natural breast. I went for a consultation, and they had one opening two weeks later. Their next opening after that was not for a few months. So I did it. I went in with questions and left with a date to get a boob job. This was on Christmas Eve too. WTF. Haha.
The first week of January, I had “regular” boob job. Well, one implant was double the size of the other, and my surgeon had to repair some damage created by my previous implant. IT CAN NEVER GO AS PLANNED OVER HERE. And no, it’s not noticeable. I wear the same size bra as before. This was not looked at as a cosmetic surgery.
Side note: I know there will be the readers out there who will say, “You didn’t have to get fake boobs to feel beautiful and confident.” I’m here to tell you, YOU DIDN’T HAVE ONE BOOB, or have to deal with what I went through and still go through on a daily basis. So please stay in your lane, and remember we are all doing our best.
*Now, if you really want to do some math. I’ve been in “quarantine/at home” since January basically, since I couldn’t lift the kids to put them the car for six weeks straight. I had two weeks of freedom before everything shut down on my birthday. LOL.*
I met Chris when I was 21. He is the light of my life. He changed everything for me. I remember telling him about my back. I always told guys I liked before they found out on their own. No surprises, ya know? He didn’t care, not even a little. Almost not enough, actually. I was like “No dude, I had a spinal fusion. I have a hump.” And he was like, “Cool. I don’t care. I’m going to marry you and one day we will have horses and a ranch.”
That was the first night I went out with Chris. I laughed at him and told him “DREAM BIG. I’m never getting married, LOVE isn’t real and I don’t want my own kids. I want to save all the children and be the baddest MF-ing social worker there is.” Obviously everything changed that night, and I never looked back. He has made me feel more beautiful than I am and loves every inch of my curves so much it’s annoying. Find you a Chris.
I’ve lived a very beautiful and FUN life. My back has never stopped me from physically doing anything, except for a bridge in yoga. :)
Thanks for reading friends.
Always and Whatever
Xo