“So just live, make mistakes and have wonderful times, but never second guess who you are, where you have been, and most importantly… where it is you are going”
– Sex and the City
During my senior year of high school, a teacher told me I should share my journey of living with scoliosis. I never really wanted to put my story out there because I do not think I’ve done anything special- thousands of people have had similar experiences as me. Also, I had no desire to open up to people about a part of myself that, at that time, I would have given anything to erase. Self-esteem is something I have always struggled with and I did not want to open up to people and show people how vulnerable I truly was. However, for some reason I during the summer of 2009, I started feeling the urge to write. I have always loved to write and I do not think I am half bad, but I never wanted to write about my back. But like I said, for a few weeks I had this overwhelming desire not only to write about my back, but also to do it publically. This still blows my mind. For those of you who know me can attest to the fact that I am really shy and unwilling to show my true self until I am fully comfortable. My best friend/ roommate/sorority sister can tell you, it took weeks of us living together (and a breakup) before I was really able to open up to her. So, like I said – for some odd reason, I wanted to share my story publically. I do not know where this is going to go, if people will even read it, or what will happen when I finish, but I am just going to start from the beginning…
[Added May 2010]
I cannot believe it has been almost a year since I started writing this blog and sharing my story. I love going back and reading these first words. I can remember how nervous I was to publish this post. In fact, I did not even tell my parents I was writing – they found out through a family friend. Now that I am a year into this, I can see that this has had a much bigger effect than I even imagined. I thought this was just going to be a way for me to remember my journey years from now and maybe a few of my family and friends would read it, but it has truly become a healing process for me. I can finally say that I am at peace with my past and I even want to turn my past into a future career.
This blog has kind of been like dumpster diving for the soul. If you do not know – dumpster diving is digging through someone else’s trash in hopes of finding a “treasure”. Who really wants to go through trash? But sometimes when you dig and dig deep down into the “trash” of the past, you can find a treasure. (Warning – I’m a cheesy person, get ready for it!)
My Little Secret
Other people’s opinion of you does not have to become your reality. ~Les Brown
Walking down the halls of middle school, I did not share the same excitement as my fellow classmates while moving from our classroom to the gym for the annual scoliosis screening. Holding the evaluation form in my hand, I prayed with each step for a “positive” result. As a naive sixth grader, I felt certain that testing positive would mean that I did not have scoliosis and testing negative would mean I did. After all, scoliosis was not a positive thing in my mind. After I finished bending over, standing up straight, leaning from one side to the other for a parent volunteer, a doctor come over to run more tests. Finally, the exam finished and I returned to my classroom extremely happy that the whole ordeal was over.
That afternoon, my mom told me that the school had called about my screening results and she scheduled a doctor’s appointment for later in the week. The results indicated that I many have scoliosis. Again, I went through a series of evaluations and the doctor released the results. Every emotion ran through my head when the doctor spoke the dreaded words, “we diagnose you with scoliosis.”
Why me? Why did this have to happen to me? This is NOT fair! I just want to be like everyone else!!!
These are just a few of the thoughts that ran through my head. To be honest, these thoughts stayed with me for years. From that point on, shame drove me to keep the scoliosis a secret. Terrified of anyone knowing about my back, I feared rejection, embarrassment, and mockery. I remember one time when going on a walk with some friends, my mom told another mom about my back. I wanted to keep my scoliosis a secret from everyone – peers, friends, adults… it did not matter – this was my secret. However, as the curve of my back continued to progress, it grew increasingly difficult to hide.
Osteoid Osteoma. I Still Can’t Say That!
“We either make ourselves miserable or we make ourselves strong. The amount of work is the same.”
– Carlos Costenada
My plan to hide the scoliosis worked until I reached the middle of my sophomore year because I started to experience intense, constant pain radiating throughout my entire back. I remember tossing and turning at night, not being able to sleep because the pain would become so intense. Since I had been going to the doctor for years to monitor the curve of my spine, I never thought something major could be wrong. Doctors know what they are doing – they would know if there was a problem.
After months of pain and a doctor who could not offer an explanation other than scoliosis should not be a painful condition, my dad had had enough – he demanded the doctor take action. Finally, with great debate, my doctor decided I may have stress fractures from the impact of tumbling. He sent me to Children’s Healthcare of Atlanta for tests even though he was convinced that the stress fractures would heal on their own.
The first test I had was a bone scan. I was strapped to a table and had to lie perfectly still as a machine closely circled around my body. This was not a small machine though. It was about the shape and size of a door that circled around my body. I distinctly remember being scared that the machine was go haywire and crush me. Next, I was taken into a different room for a CT Scan. The CT Scan was very quick and easy. All I had to do was lie on my back and cast my gaze on the hot air balloons painted on the ceiling as a much smaller machine spun quickly around me. Finally, I went into the last exam room to have a MRI. Since the bone scan and CT scan had not shown any fractures, the doctors decided to use a contrast agent which would enhance the MRI image. Because the scan would be administered with contrast, my mom and I had to watch a video about the risks involved.
Contrast agents improve tissue discrimination in a MRI scan. Since they were looking for stress fractures, the contrast would “puddle” in the fractured bones or other imperfections.
Some of the risks included: allergic reactions, feeling light headed/passing out and my personal favorite…death! That is definitely not what you want to hear right before they inject you with contrast and slide you back into a tunnel, which just so happens to look like a coffin. I can laugh about this now, but I remember having this thought process:
“They said if something goes wrong I would die almost immediately after injection. Okay, it has been a few seconds…still here…it has been at least a minuet…still here… “
Needless to say, I survived the contrast injection and could focus on watching “Finding Nemo” over the loud sounds of the machine. It took over an hour for the machine to gather the necessary information. I realize that reading about my MRI with contrast may sound scary, but let me assure you that usage of the contrast agent is rare. In fact, it is only used about 20% of the time. I have always said I have horrible (or awesome?) medical luck. With all of the exams complete, all that was left was the diagnosis.
Walking out of the scanning room, I saw my mom talking behind a wall of the waiting room to a man in a white lab coat. My mom looked frightened, but I still had no suspicion of a major problem. Honestly, I was just happy to be up and moving after having to lie perfectly still all morning. The doctor explained that the test revealed a benign Osteoid Osteoma tumor, not related to the scoliosis, on my lower spine. Since the diagnosis came as a complete shock, the doctor had to explain in great detail what was growing on my spine.
Osteoid osteomas occur when certain cells divide uncontrollably, forming a small mass of bone tissue. The tumor replaces healthy bone tissue with abnormal, hard bone tissue. No one knows exactly why this occurs.
As soon as he ran down the list of common symptoms, it all seemed so clear.
- Sharp pain that worsens at night – check
- Pain that is usually relieved by aspirin or other anti-inflammatory drugs – check
- Painful scoliosis and muscle spasticity – check, check, CHECK!
- Nerve symptoms- check
Clearly the diagnosis was correct, so now came time to discuss the treatment options.
A) I could wait out the pain and trust my body to identify the irritant. Normally, and I quote, “the body will break up the tumor in roughly 24 months.”
B) Have surgery to literally burn off the tumor
I honestly do not know who would have the sanity to live two years in pain, so without a second thought, I chose surgery. The doctors said that as soon as the procedure was complete, the pain would instantly vanish. Surgery, however, required a long recovery period. Because it was in the middle of competition cheerleading season, I had yet another choice to make. I could either have surgery immediately, get rid of the pain, and leave my team with a replacement half way through the season, or I could work through the pain and have surgery at the conclusion of the season. After thinking about how my decision affected my team (and my own sanity) I decided to schedule my surgery for after the competition season.
Finishing that season was one of the toughest things I have ever done, but I felt absolutely no regrets. Practices were full of pain and tears, but my zest kept me going. I’ll never forget the competition at Winder Barrow High School when my coach had to literally carry me off the floor… I was so embarrassed! I found ways to get through the season though. Everybody knew they could find me near an outlet with the heating pad.
A couple of weeks after the season ended, I checked into Crawford Long Hospital in Atlanta for my surgery. After a few hours I woke up in a hospital bed wondering where I was. A nurse came in and told me they were trying to reach my mother, but she was not answering her phone – not to anyone’s surprise in my family. The surgery was successful and was eager for the next season to start. Amazingly, I have no scar and probably could not even tell you where one would be. Also, I was able to step right back into cheerleading without any major setbacks. It was the best feeling to live pain free!
Not so pain free…
“One can survive everything, nowadays, except death” – Oscar Wilde
However, to my dismay, the pain returned with vengeance. Only this time the doctors did not know why my back was hurting. Scoliosis should be painless and the tumor was successfully removed. My current doctor, however, did not seem too concerned and basically told me there is no actual source of my pain so I would just have to learn to live life with chronic back pain. I remember sitting in the doctor’s office visit after visit crying because I just wanted someone to believe me and understand the pain was truly unbearable. Plus, I do not think anybody should have to live in pain. At this point my parents decided it was time for a second opinion.
A few weeks later, I found myself sitting in a new doctor’s office waiting for my turn in the x-ray room. I have become an x-ray pro- at least two a visit every three months since sixth grade! After waiting for what seemed like years to pass, the doctor called my mom and me into the hall way to discuss the x-rays. This doctor’s office had one large back light in the hall for x-rays instead of individual ones in the exam rooms. As soon as we got into the hall, I took a look at the line up of scoliosis x-rays. There was one on the end that immediately caught my eye – that poor person’s spine was horrible! Thank God that was not my x-ray! In harsh contrast to the black background, the white bones jutted out to the right, clearly indicating severe scoliosis. The doctor started talking about the findings as he starting walking down the lineup of x-rays to the one on the end of the horrible scoliosis curve. It did not take me too much longer to realize that the x-ray on the end, the one of the horrible scoliosis curve was not just any “poor person”, it was ME! Right there in the middle of the hall, I burst out crying. I was horrified that my spine was so crooked. Physically I knew it was bad because you could see the curve without x-ray technology, but hearing a doctor say the curve was 50 degrees crushed me. Perception is reality, but seeing hard facts snaps that “reality” into real life reality. I knew what 50 degrees meant for my future and I knew it meant I was going to have to face the deformity I had spent my life trying to hide.
After further testing, the doctors determined that the tumor caused my scoliosis to rapidly progress, causing stress to the rest of my back, muscles, and ribs. A result of the tumor is that bone forms around the tumor as the body tries to move away from the irritant. This caused my scoliosis to progress. I was again told the only solution was serious surgery, but this time there were no other alternatives. Without surgery, I was risking my future health.
“Beyond 50 degrees, the spine loses its ability to compensate and progression becomes inevitable even after the child is mature. The only way to stop progression at this stage is a surgery called spinal fusion. Think of the vertebrae as beads on a string. The spine bends between the vertebrae as a string bends between the beads, causing the beads to move. The way to stop the beads from moving is to stick them together”
UCSF Children’s Hospital. http://www.ucsfhealth.org/childrens/medical_services/ortho/spine/conditions/scoliosis/treatments.html
Since this surgery would be an extremely invasive surgery with an extensive recovery, a return to cheerleading was undoubtedly out of the question.
The first person I told was Shelley, my best friend since we were four. Since we have been friends for so many years, the second she saw my face, she knew something was up. We were standing in the hall of Dacula High School waiting for the sixth period bell to ring when I told her. Standing there, in the hall way, Shelley hugged me as a fought back tears.
A few weeks later, I had to opportunity to meet a young girl, Hadley* who had just successfully had the spinal fusion to correct her scoliosis. It was so reassuring to see her so content and healthy. Her mom was extremely helpful and answered my family’s thousands of questions pertaining to the surgery. Her mom raved about the doctor they used and how he had never pressured or rushed them into any decisions. Since my current doctor was rushing surgery on me, we decided to see a doctor in the same practice as Hadley.
Again, I found myself waiting in a new exam room after taking x-rays. I have to take a moment to talk about the new doctor’s office. At this point, I am seventeen years old – not a child, but still able to see a pediatric doctor. My tumor removal surgery was done at a normal/adult hospital and while everybody was extremely nice, doctors who work with children just seem to express more empathy. I do not think I can paint a picture that would do this justice, but the office was a circus theme. What child wouldn’t love that? Imagine bright paint, clowns, children’s toys sprayed across the floor, and then my mom and me- sitting in child sized chairs (all the doctor’s office had) amidst the circus. I always felt so out of place (and awkward) in that office. To this day (now 20), I still am willing to go back to the “big top” to see the wonderful Dr. Devito.
Dr. Devito looked at my x-rays and again came to the same measurement – 50 degrees. He discussed with my family that I would need surgery to correct my spine or I would experience heart and lung complications as an adult. However, this time I heard splendid news… I could wait to have surgery! Dr. Devito ensured me that I could finish my high school cheerleading career, but I would have to have a spinal fusion immediately after. He said that if I was willing to work through the pain, I was at the point where I would need surgery either way so waiting a few more months would not make a huge difference. Since I had lived for years in pain, I knew I could make it one more year!
So with that news, I returned to cheerleading determined to make the most of my senior year.
*Name was changed
We must have strong minds
“We must have strong minds, ready to accept facts as they are.” – Harry S Truman
My senior year of high school was trying both physically and mentally. Cheerleading became almost physically unbearable. Ask anyone on my team and they would tell you that practice would not be complete without Ashleigh crying. (In case you haven’t noticed – I cry a lot. I just like to say I’m in touch with my emotions.) However, day after day I showed up, put on my shoes, tied back my hair into a pony tail, applied prescription strength Bengay and a stick on heating pad.
There is one practice in particular that will always replay in my mind. The team was working on basket tosses – kick fulls to be exact. Wendy and Olivia (the other two flyers) could easily complete the skill, but for some reason I couldn’t even though I had done this same basket many times before.
A kick full basket is when the stunt group faces the side and the bases throw the flyer in the air. In the air, the flyer kicks one leg up and then spins one time around before the bases catch her.
After several times of not making it all the way around in the spin, thus being caught on my side, my ribs started pounding with pain. With tears streaming down my face, my coach asked Shelley to step in and try my stunt. While I was happy for the team, I was extremely angry at myself for not being able to do a skill that I knew I could. The only conclusion that I can draw is that since my spine’s curve is in the opposite direction that I was trying to twist, physically, my body could not complete the basket toss any longer.
One of the scariest moments in my cheerleading career:
Jitters are common during warm ups at a competition. Although I had been competing since fifth grade, I always got a little nervous. However, one competition at Duluth High School, my body just felt weird going into warm ups – no other way to describe it…just weird.
On the first mat, the team warmed up tumbling. I went to do a pike-back (a pike jump immediately followed by a back-tuck) and I crashed. I mean, I CRASHED; 100% ate the mat. Since I had been able to do that skill for a while, not landing it was uncommon. Instantly, my nerves when through the roof. After taking a deep breath and giving myself a pep-talk, I lined up to try it again. I felt tremendous relief once I had landed solid on two feet, but I was having a hard time breathing.
Next, my team moved onto the next set of mats allotted for stunting. My stunt group got into position; I went up and did the sequence of skills. While normally my stunts were solid, I was having a hard time not shaking. The cradle was complete and I was standing with two feet on the ground, but my body kept shaking. We moved on to the pyramid where I was one of the top girls. I went up like normal, locked my knee…and crumbled to the floor- again, not common. Now I was getting scared! What was wrong with me?
Suddenly my hands started to tingle. I was determined to compete, so I tried the pyramid again. This time I did not even make it up. By this point I was having an even harder time breathing and the tingling had moved into my arms. My team moved into the holding area and I leaned against the wall with my eyes closed. Over and over I kept telling myself, “two and a half minutes, just do it, just make it through, you have no choice, just do it…”
My coach, who had been my coach for several years, knew something was wrong. She stood next to me and repeatedly asked me if I was okay. The tingling continued in my hands, arms, and had now moved into my face. My breathing was getting even more forced, so finally I broke down and told her “no, I was not okay.” She rushed me to the trainer and sent somebody to get my mom from the bleachers. No matter how hard I tired, I could not get my breathing under control. The trainer and my mom decided that I should go to the hospital.
Since Shelly and I were neighbors and we had to meet our team early, we rode together in my car and our moms rode in Mrs. Wade’s car. So, while I was being looked at by the trainer, Shelley and Aubrey, our friend and teammate, ran to get my car. I still laugh when I remember Shelley telling me this story. They ran all the way to my car and she tried to pull out of the parking spot fast, however she just revved the engine. She said she struggled all the way to the doors since she was used to her Jetta and I drive a RT Stratus. Oh, not to mention that she was still in her six months of not being able to drive anyone other than family without a license. What a comical moment.
At the hospital, I was hooked up to an Electocardiography (EKG) for heart monitoring and given an IV for fluids. After a few hours, my breathing returned to normal and my heart was fine. The doctors said that the scoliosis was causing my sternum to push against my lungs. What happened was just a “freak” accident and the surgery would prevent it from happening again.
I also faced adversity off the cheerleading mats. I’ll never forget the embarrassment I felt one day sitting in Advanced Placement Statistics senior year. I had on my standard uniform – a black shirt to camouflage my deformed back. The shirt I had on that day, although not very far, scooped down in the back. I guess my curvature was causing the scoop to pull to one side. A girl sitting behind me tapped me on the shoulder and (loudly) said, “WOW! Your back looks really bad in that shirt!” I wanted nothing more than to crawl under my desk and die. Then, my emotions shifted from embarrassment to anger. How could somebody say that? Did she not know that I did not want any more attention on my back? I felt like the insecure sixth grader all over again. It is easy to tell myself that I shouldn’t care, but when somebody attacks a personal embarrassment – it stings. Time heals all wounds and I’ve learned that some people are just immature.
As soon as the competition cheerleading season ended (6th place in State!), I was finally mentally and physically ready to undergo the spinal fusion.
Dacula Falcons! The BEST by far!
“You cannot create experience. You must undergo it.” -Albert Camus
Before I talk about my surgery, I want to take a moment to thank my friends and teammates. There is no way I could have pushed through the pain without them. I would be lying if I said there aren’t days I cry just thinking about how much my senior year cheerleading squad means to me. One of the many presents seniors received that year was a notebook filled with letters and memories from the underclassmen. Days when I am feeling down, I pull it out to read and my spirits are instantly lifted. Here are a few of my favorite notes:
“I’ve always been able to look up to you because you’ve always worked so hard and proven to be so strong.” – AR
“You inspired me to always fight and never give up. You’re so strong fighting through the pain because I know your back is killing you.” – CG
Whatever life throws at you, always remember one thing…DON’T YOU QUIT!!! Remember this as well…we can’t always plan our lives. God has a plan for us and everything will work out the way it is supposed to in the end! Just enjoy life.” – Peace
Even though I don’t believe I was “inspirational”, reading these words always makes me feel like I can keep going. I still read the notes in my notebook and the messages written on my megaphone quite often. So I just wanted to take this opportunity to thank everyone who kept me going. I will never forget my senior year – not because of the pain or the surgery – but because of my friends who kept me going.
P.S. I mentioned above Peace telling me, “DON’T YOU QUIT!” After a particularly tough practice (the kick full basket toss practice I discussed in a previous post) she gave me a card with a poem inside. The poem meant so much to me that I shared it with the team. “DON’T YOU QUIT” became one of our many saying of that year – along with “organic slammer” (trust me, you don’t want to know!) I couldn’t help but cry as I read the poem at the final banquet I would attend as a cheerleader.
DON’T YOU QUIT!
When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit-
Rest if you must, but DON’T YOU QUIT.
Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a fellow turns about
When he might have won had he stuck it out.
Don’t give up though the pace seems slow-
You may succeed with another blow.
Often the goal is nearer than
It seems to a faint and faltering man;
Often the struggler has given up
When he might have captured the victor’s cup;
And he learned too late when the night came down,
How close he was to the golden crown.
Success is failure turned inside out-
The silver tint in the clouds of doubt,
And you never can tell how close you are,
It might be near when it seems afar;
So stick to the fight when you’re hardest hit-
It’s when things seem worst that you must NOT QUIT!
– Ralph Acosta –
“I think God allows obstacles to occur in our life for us to overcome them and grow in life”
- Fritz Smith (my Papa – pronounced in a southern accent… pa-paw)
Children’s Healthcare of Atlanta – I will never hear that name without the memories of my surgery flooding my mind. This will be an extremely long post, but I want every detail down – not to bore you, but for me. I know a day will come when these memories will become a mere blur. Also please be patient because this will also be a very choppy post since my memories are choppy.
Granny and Papa came down from Alabama to help my parents before and after surgery. Granny would help take care of me after mom went back to work and Papa was the designated driver. He was also very interested in the process of my spinal fusion due to his own back issues.
We ate at Longhorn Steakhouse for my “last supper” as I like to call it. I did not want the night to end because that would mean the upcoming surgery was real. Up until that night, the surgery was just something we talked about, but it had never really occurred to me that I was having a risky surgery. I was so anxious. I could not fathom finally having a straight back. Mom and I went back to our hotel room in downtown Atlanta; I took a long shower and climbed into bed. Every time I closed my eyes, my mind started racing. Since I could not fall asleep, I turned on the TV and started watching “The Bounty Hunter” – the only option when stuck with hotel cable. Finally, after about five episodes, I got my mind to shut off and sleep came on.
This picture was taken the night before my surgery.
I awoke the next morning after only getting a few hours of sleep and decided to take another shower. I hate being dirty and I knew it would be months before I could take a real shower again.
(Jan. 3, 2007)
I wish I would have thought to journal more throughout the day of my surgery because from here my memories really start to fade.
The next thing I remember is going into the pre-op room where I put on my designer hospital gown and extra warm, fluffy socks. It is funny because I do not remember being nervous. I am sure I was, but all I remember is being really anxious for what everything was going to feel like once I woke up. A nurse came in and hooked electrodes to my feet while she explained that she would monitor my functions during the procedure. Then my doctor came in one last time to explain the risks associated with spinal surgery (such as the risk of paralysis). Why do they feel the need to do this right before they put you under? The last thing I remember is taking my “cocktail” to help calm my anxiety before I was taken into the operating room. This is where my pre-op memories end, which is scary since my mom says I continued to talk up until they took me away- none of which I remember.
Scoliosis surgery from the back (posterior surgical approach)
This approach to scoliosis is done through a long incision on the back of the spine – the incision goes the entire length of the thoracic (upper) spine.
- After making the incision, the muscles are then stripped up off the spine to allow the surgeon access to the bony elements in the spine
- The spine is then instrumented (the screws are inserted) and the rods are used to reduce the amount of the curvature
- Bone is then added, which in turn incites a reaction that results in the spine fusing together
- The fusion process usually takes about 3 to 6 months, and can continue for up to 12 months
Five hours later…
My eyes are not open, but I can tell I’m in a bright room. I hear a nurse asking me what my pain level was and I, rocking back and forth, cried, “ten, ten, ten…” (for those of you who don’t know, the doctors always ask you to rate your pain – 1 being a tiny amount, 10 being horrible pain). I remember feeling extremely stiff. Imagine being strapped to a board and trying to move – that is what I felt like. The nurse started my medicine and I drifted back into sleep.
Next, I remember opening my eyes for the second time as the doctors wheeled my bed into a private room where my parents were waiting. They used a sheet to lift me off the temporary bed onto the bed in the room. I would have to be rotated, so a blanket would have to be placed under my back to make the rotation process easier. Of course, the doctors did not realize that the sheet was not on my bed until after they had all ready, painfully, moved me. So, back up I went while a nurse put the rotation blanket down. This was probably my dad’s favorite moment because he said that when they lifted me back up, I stuck out my bottom lip (pouting like I was his little girl again). Once the blanket was in place and I was back on the bed, I hit my morphine button and fell back asleep. It’s funny the things I do remember from my hospital stay. Strangely, I can remember the exact layout of my hospital room. Right when you walked in there was a twin hospital bed. Beside that was a chair and then a couch/bed for a parent to sleep on during the night. Then there was a bathroom and a TV on the wall. That was it, my luxurious recovery room. Too bad I did not quite have the movie star experience.
Here are some other things I can remember:
- After three hours, I was rotated from my side to my back. Three hours later, I was rotated from my back to the other side. After three more hours, I was rotated back onto my back…for months!!! Also, no matter which way I was turned, my body had to be perfectly straight.
- I remember begging Granny for ice chips and my dad for banana Popsicles
- How heavy my back felt when I had to sit up (the day after surgery!)
- The nurses cheering me on as I moved slower than a snail down the hospital halls
- My mom trying to “wash” my hair with leave in cleaner product, which resulted in even more grease
- My belly getting extremely bloated (like I was expecting a baby)
- Watching – well, sleeping- through Disney movies – the only selection when you’re at a children’s hospital
- The nurses guessing how many inches I gained after straightening my spine
- The nurses clapping when I discovered I grew TWO inches!
- Having no idea if it was day or night/ who was in my room (I’ve been told I had many visitors… sorry that I have no idea who!)
Even though I spent five days in the hospital, that is pretty much all I can remember. When I was finally recovered enough to go home, I was sent on my way to finish the recovery process. Little did I know, going home was not going to be as great as I thought.
It’s amazing what five hours and some metal can do!
Not quite home, sweet home
“The pain gets pretty bad at times, but I just have to tell myself to stay strong.”
– My journal, January 11, 2007
After five days in the hospital, I was beyond ready for the comfort and familiarity of my own home, sweet home. However, returning to my home was not as glorious as I had imagined.
In order to be discharged from the hospital, I had to gain enough strength to climb a flight of stairs. Ready or not, the big day came. Looking at the stairs, I was very nervous. Although I was only required to walk up about 15 stairs, I felt as though I was about to walk up thousands. I was determined to complete the task because I longed to be back in my own bed. The nurse took me by the elbow and I picked my foot up. Because my back muscles were temporarily moved so the surgeon could reach my spine, I was extremely weak. I felt like there was bricks piled on my back. Slowly, but surly, I made it to the top and had a Rocky moment – just kidding! But the moment I had longed for was finally here! I was going home! I returned to my room to rest for the 45 minute ride home while my parents packed everything up. When the time to leave finally arrived, I received a grand mixture of drugs, took a morphine hit and was pushed in a wheelchair to the car.
The car ride home was horrible, even with all of the medication. Dear city of Atlanta, please fix all the potholes! Of course, the hospital was on the west side of Atlanta and our house is northeast of the city. Traffic and crazy Atlanta drivers do not mix well with back pain. Overall, it was not an enjoyable ride to say the least.
Once I was home, I faced the challenge of climbing the stairs again to get to my bedroom. Amazingly, I reached the second floor with ease and I could not help but think the worst of my recovery was behind me. Well, I guess ignorance is bliss if only for a few minutes. Within a few hours, the medication had worn off and pain settled in for the long haul.
Again, I do not have complete memories of what exactly happened – most of my days were spent sleeping, but I will try to share as much as I can remember.
The first few days home, I fell victim to the paradox that is pain medication. I had no appetite for food, but was experiencing immense pain. Naturally, my mom would give me medication prescribed by the hospital and almost immediately I would become violently ill. I will spare you the details, but nausea and back pain do not mesh. I was miserable and I begged my mom and granny to take me back to the hospital. After several days of not being able to keep what little food I was eating down, my mom started to grow concerned. My weight was drastically dropping and I had already lost the fifteen pounds I gained in preparation for the surgery. Another cause for concern was the fact that I had not used the bathroom in two weeks. The hospital warned that if I continued this cycle, I would have to be readmitted. My family tried everything to flush my system. Finally, just days before the hospital’s deadline, my grandmother, lightheartedly, offered me money to use the bathroom. Needless to say, I earned my $100 bill!
No more gross stuff – I promise!
I have a confession… Hi my name is Ashleigh and I have OCD. Well, not medically diagnosed, but I definitely get stuck on things. Here is just one example. Hanging from my ceiling in my bedroom was a grass skirt table cloth to go with my “Hawaii” themed décor. I had glued flowers across the top of it. Trust me, it was cute despite my lack of adjectives to describe it. Anyways, there was one flower that caught my eye because it was slightly out of place. I could not help but stare at it all day and I wanted to badly to fix it. As soon as my boyfriend came over after school to visit, I made him pull out a chair and move the flower about 2 cm. to fall in line with all the other flowers. Told you – I am crazy! I also noticed things like how the line where the lime green paint (obnoxious, I know) on my walls and the white ceiling was not straight. However, I do not think I could have convinced my dad to fix that!
There is one more memory I have that I would like to share… the infamous blue chair. Even after my return home, I still had to be rotated every three hours – day and night. My mom decided that she would move a chair next to my bed so she could rotate me, be there if I needed something during the night, and sleep. Night after night, my mom slept sitting up in the old blue chair waiting on my every request. Often, throughout the night I would have to be repositioned because I would become so stiff and uncomfortable. I cannot even put into words how annoying laying perfectly straight can be. My only relief was stacking pillows all around my back so I could have some support. How my mom did that for months is beyond me, but I am truly thankful.
Get me out of here!
“Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.”
Picture this: An abnormally skinny, weak, pale girl walking down the street.
An abnormally skinny, weak, pale, greasy hair girl wearing pajama pants, house shoes, and a robe walking very slowly down the road.
Laughing? I still am.
It’s amazing what 2 months of bed rest can drive you to do!
After one month, I was finally strong enough to walk up and down the stairs. This may seem like a small feat, but after 30 days of being confined to a bedroom, a hallway, and a bathroom, this brought immense joy to my drab routine. Being able to go downstairs opened up a whole new world for me. It allowed me to eat dinner and watch TV with my family. Well, let me clarify, I was able to do these things while standing next to my family since I was still unable to sit down. So while my family ate dinner, I would stand at the high counter and eat. The same went for TV. I could lean against the arm rest of the couch, but standing was more comfortable.
When I went back to see Dr. Davito for a two month checkup, he finally cleared me to start building up my activity level. I also got to leave with a copy of my x-rays after I got the nerve up to ask the doctor for a copy. He was so kind about it and happily burned the pictures onto a CD for me. I mean, let’s just be honest… my x-rays are pretty cool.
The first night I was released, I went to the Dacula High School Basketball game. I can still remember how nervous I was for everyone to see me for the first time. When my team saw me, they gathered around me and it was so nice to be surrounded my friends again. I can also remember how everyone thought it was so crazy that I grew two inches since the last time they had seen me. Words truly cannot describe that moment.
Finally, 3 months passed and I was able to work my way back into school. I actually was very happy to go back since I had missed three months of my senior year. When I did return, I had to sit on pillows to add some padding to the plastic desk chairs. Surgery did have its perks though; I got to use the elevator to my classes and I never had to carry any books.
It took me about 4 months to get back to normal. To this day, I do not know how I stayed in bed for all those months, but I guess you can do many things your mind doesn’t think are possible.
All the stitches are gone!
The doctors required me to gain weight before my surgery. I was able to gain about 15 pounds. After surgery I got down to 100 pounds – you can tell how skinny I got in this picture!
“The human spirit is stronger than anything that can happen to it.”
– CC Scott
Again, I want to thank my friends and family. I am sure there is no way I could have stayed so positive without them. After my surgery, I received more flowers and cards than I could have ever imagined. I cannot explain the overwhelming joy I received from reading all the kind and encouraging words. I also received numerous care packages which were so thoughtful – I enjoyed playing with every “little kid” toy given. Of course, I have to give Wendy a special thank you for the life size card (literally!) she made for me. I hung it up in front of my window and looked at it many times with a huge smile on my face. So thank you Wendy for taking the time to make me a 5 foot 2 inch card!
I also wanted to share with you the wonderful effects of medication on my dreams. My mom told me that I should write them in my journal so I could laugh about them later- I am extremely happy I listened. Before you read this, let me emphasize, I was on a strong dose of medication…
“I got up to the bathroom and mom went to get me a wash cloth. Suddenly, the power went out, but then came right back on. I came back to my room and there were balloons everywhere- even all over the floor. I bend down to duck under the balloons and it hurt my back. I fell down and my retainer fell out… with my teeth still in it. I looked in the mirror and all my teeth were missing!”
– January 11, 2007.
Your Mountain is Waiting
“Go confidently in the direction of your dreams. Live the life you have imagined.”
– Henry David Thoreau
Since my spinal fusion required bed rest for three months, I was forced to take online classes so I could graduate on time with my class. Home bound schooling was…well, less than desirable. I’ll try my best to describe how the process works, but I’m not sure I can make sense of it. I would log in on the school’s website and it would give me a phone number to call. When the call connected, my name would appear on the computer’s desktop screen. On the screen I could also see what my teacher was doing on her computer and I would hear her speaking through the phone. In theory, sounds like a good setup. However, my surgery just so happened to fall the week before the start of the semester, so my first day home from the hospital was also the first day of class. Obviously, I was not coherent due to all the pain medications. My mom decided that the only solution was for her, years removed from high school, to pretend to be me. She would sit next to me on the bed with the phone on the speaker phone setting so I could at least hear what was happening in class. This is one of the funnier moments of my recovery because the teacher kept called on me (aka my mom) and she would frantically look up the answer in the book.
After a month, I was able to go to my first period class a few days a week. Two months after my surgery, I had built up to about three classes a day. I was able to return to school full time after about two and a half months.
Four months after my spinal fusion I graduated with distinction from Dacula High School. Graduation was not only a milestone in my education, but it also was a symbol of the end of an era abundant with back pain.
I have to admit that I was beyond ready to leave the gossip filled, small town of Dacula, Georgia. It was not that I had an aversion to high school – I miss many aspects of it. It was not that I loathed the people – I am still very close with some of my friends from high school. You see, throughout high school I dealt with different labels. Don’t get me wrong, I know everybody faces these same issues. In high school, I was the captain cheerleader dating the football ‘star’, I got involved in everything; I was the all round “goody goody”. However, I also dealt with another set of labels. Freshmen year, I was “the girl with scoliosis”. Sophomore year, I was “the tumor girl”. By senior year, I was just “that back girl”. Needless to say, I was ready to run away to a place where nobody knew my story or the adversities I faced during high school. Even though I had looked at colleges in Georgia, I only applied to Auburn in Alabama and USC in South Carolina. At the last minute, I decided to spend my four years in college at the University of South Carolina.
From Oh! The Places You’ll Go!
By Dr. Seuss
Today is your day.
You’re off to Great Places!
You’re off and away!
You have brains in your head.
You have feet in your shoes.
You can steer yourself any direction you choose.
You’re on your own.
And you know what you know.
And YOU are the guy who’ll decide where to go!
Kid, you’ll move mountains!
So… be your name Buxbaum or Bixby or Bray or
Mordecai Ale Van Allen O’Shea, you’re off to Great Places!
Your mountain is waiting.
So…get on your way!
The Snowball Effect
“A strong positive mental attitude will create more miracles than any wonder drug.”
- Patricia Neal
When I was thinking about what to write in this post, I was originally going to write about several different topics, neatly broken apart into an organized layout. However, as soon as I started placing my thoughts into words, stories kept overlapping and I could not figure out what to put where. That is when I realized I couldn’t separate the topics because my life has been a prime example of the snowball effect.
Snowball effect: (adj.) descriptive of an entity or situation where something once small and relatively insignificant grows exponentially at a swift pace, engulfing everything in its path.
Source: http://www.urbandictionary.com (academic, I know)
My life was pretty ordinary until I was diagnosed with scoliosis in sixth grade. It took a stranger turn when I developed the tumor. The snowball kept rolling as my scoliosis progressed into a need for the spinal fusion. Two years later, the snowball continues to grow now that I have developed rib problems. Prior to my surgery, there was great discussion on whether or not one of my ribs should be removed. Long story short- Dr. Davito felt that once my curve was corrected, my ribs would move with my spine and go back to their correct placement. However, this did not occur.
In 2008, I started having an intense pain around my shoulder blade. I like to think I have a high tolerance for pain, but this new pain would bring me to tears. The most frustrating thing about this new pain was that it struck like a lightning bolt. One second I was fine and with the slightest movement, the pain would overwhelm me. Then, within seconds, the pain would disappear. I had a very difficult time explaining the pain to my doctor because there was no exact movement that caused the pain. Sometimes pulling up my pants would cause it; other times moving my arm backwards would cause it. After Dr. Davito examined my back, he found several large muscle knots concentrated around my shoulder blade. He diagnosed the pain as muscle spasms and the required treatment would be physical therapy. So off I went to a new doctor…
(Time reference, Summer 2009)
Upon my first visit to Dr. Bob, a manual therapist, I knew he would do everything in his power to fix my pain. This made me so excited because I had lived with back pain almost half my life. For a majority of that time, I was told I would just have to learn to live with the pain. After a full hour evaluation, he concluded that my pain was not stemming from my muscles; it was due to my ribs. It turns out that two of my ribs did not move into position after my spinal fusion. As a result, they were rubbing against each other and their connecting spot to the spine – causing the intense, but short pain. The muscle knots developed as a result of my body tensing up in order to avoid the pain.
Twice a week I would go to Dr. Bob’s office and he would work on slowly moving my ribs back into place. The process if difficult to explain, but basically, Dr. Bob would check the spacing between my ribs. He was able to find the problem ribs because he could not get his fingers in between them. Next, he would apply pressure to different ribs and have me press my arms down against different levels of resistance. Slowly the ribs moved. After about five weeks of twice a week visits, he was able to successfully move the ribs and correct their spacing! While I was overjoyed, he had to sit me down and give me the honest truth. I think he did a wonderful job explaining it to me, so I will try to repeat how he worded it. For the seventeen years prior to my fusion, my body had been adjusted to having a curved spine. Then, in a matter of five hours, everything changed. Just like humans, my back “freaked out”. Therefore, just because my ribs are corrected now, they might move back. Also, because I have a fused spine, moving my ribs could not totally fix the problem because my spine does not allow for change. Your bones and joints are made to move and adjust. While some of my bones are moving, I have a spine that is held stable, so this contrast causes pain.
I have to admit, I was very disappointed by this news. Sometimes I get angry that I have been through so many x-rays, doctor appointments, and surgeries only to find out that I will always have pain. But then I have to be logical – even if I am upset or feel sorry for myself, where does that get me? No where! So that is my outlook. Yes, I will always have some level of back pain – even as I write this my back is killing me from sitting in classes, but I cannot let that stop me. As I wrote in my college entrance essay, I may not be able to ride wooden roller coasters, tumble, or even live pain free, but there are still a million things I do… so I am!
Who am I again?
“Life is a journey and you must experience it at some risk…but the rewards are immeasurable.”
- Heather Young (advice from my graduation letter)
While I would love to skip this topic, I feel like it has affected so much of my life that my story would not be complete without including it. Plus, it is something that I’ve never really talked about… to anyone, so why not do it now, publicly!?! :)
I wish I could say having the surgery gave me my happy ending. I wish I could say that having the surgery gave me the boost of confidence I so desperately longed for. Unfortunately, I cannot. Now I do not want to sound like a “Debbie downer”, but the truth is, surgery was not my magic cure.
After my surgery, I was abundant with new found confidence. I could wear shirts with writing on the back without words pulling to one side. (Once, when I was about fifteen, I had on a shirt with “04” printed on the back. Somebody asked me why the numbers weren’t straight and I replied that it must have just been printed wrong. Luckily, since we were young, that excuse worked, even though I knew I was completely lying.) So yes, I could fearlessly wear shirts with printing on the back. I could wear zippers and silk. When you looked at me, I no longer looked physically deformed. I had a symmetrical waist line and my left ribs did not stick out as much as before my surgery. I was floating on cloud nine.
I gained a lot from my surgery, I also had to give some aspects of my “old” life up. For those of you who knew me before college (or have got the idea from the content of my previous blog posts) know that cheerleading consumed my life. It did not matter if it was on the sideline at a football game, walking onto the competition mat in a crowed gym, or being pushed off into the corner of a basketball court – I could not get enough of it. When I was cheering, I had all the confidence in the world. I wanted to be the flyer, the captain, and the front spot in the lineup.
So naturally, I had planned to continue my cheerleading career in college. In fact, during my sophomore and junior years of high school, the colleges I was planning to apply for were about 99% dependent on their cheerleading program. However, after my surgery, I was cleared for everything except one little activity… gymnastics! I could not believe it! I was cleared to sky dive, but I couldn’t tumble?!?! The only way I was going to become a college cheerleader was to have tumbling skills.
So, in a matter of five short hours in the operation room and one follow-up appointment, the dream of college cheerleading was purely that… only a distant dream about the future that would never become reality. Not only did my dream end, but it seemed like the confidence cheerleading gave me ended as well.
When I came to college, I rushed a sorority. While I always say being in a sorority is similar to being a cheerleader – the truth is, it really is not the same. I felt so lost. In high school I knew who I was. I was “the cheerleader”, but at college, nobody knew or even cared. Not only did they not know I cheered in high school, nobody actually knew me since I was the only person from my high school to go to USC. I had to start over with not only friends, but also with my identity. In less than eight months, I had undergone a major surgery and recovery, graduated from high school, and moved 3 1/2 hours away from home… alone. The only way to explain how I felt was completely overwhelmed and scared out of my mind!
My first few weeks of college, I felt like everybody knew each other and knew all the “cool things” that I have never even heard of. I did not own a Lilly Pulitzer dress, Rainbow flip flops, Sperry’s, a Northface jacket, or even pearls. For some reason, these material items made me very insecure. Instead of acting logically, I kept building these thoughts up until I hated USC. I would cry to my parents to let me transfer to the University of Georgia where my friends were. Much to my dismay, they told me I needed to stick it out one full year and then I could make my decision. So, I started a countdown until summer vacation when I could escape Columbia. I can still remember my overwhelming joy I felt as I packed up my car to head back to Atlanta.
The summer after my freshmen year, I met Andrew and we started dating. He somehow made me excited to return to USC. So, after a summer away from Columbia to regroup, I packed up and returned to USC for my sophomore year.
Sophomore year I made a few more friends and got a little more involved in my sorority. I had a better roommate and liked my classes more. However, I still felt out of my element and honestly just felt confused about who I was and what I was doing with my life.
The summer between sophomore and junior years, I finally took some time to spend working on my confidence and identity. Growing up, I had little self confidence due to my back problems, but I could mask it with cheerleading. After my surgery, I had a new found confidence, but it eventually dropped again. Why did this happen? This is something I’ve struggled with, but here is what I have concluded.
(Now you get to jump inside my brain… I warn you, it’s an endless cycle of thoughts…)
I do not see myself as having a straight, “normal” back. When I look in the mirror, I still see all my “flaws”. I see how my spine is still slightly curved and how one side of my ribs still stick out farther than the other side. I am constantly reminded of my scoliosis when I see my scar or feel pain. Every time I am asked about my scar, I have to remember my struggles. Also, I realized I had no passion any more. Cheerleading was my passion, my identity, but that was gone.
But don’t worry!
I’ve been reading books about confidence and have been talking to people about the way my brain works. So far, my junior year has been such a change! I have gotten really involved in my sorority, became the President of a club, and made more quality, lifelong friends. (Shout out to Kassie who I met in the lobby of Patterson Hall dorms. We were both crying… it was fate!)
I have also found a new passion – running. When I lace up my tennis shoes and go for a run, it is my time to relax, clear my mind, or the complete opposite, to think. After my runs, I feel so accomplished and refreshed. Last spring I started competing in races. The first one I did was a 5k in Columbia. I finished 4th in my age group (one place from getting a metal). From that point on, I was hooked! My competitiveness kicked in and I wanted metals – funny, but true! I competed in my second race over the summer – a 10k in Atlanta. I was surprise and thrilled when they called my name out for the second place finish in my age group. The next race I did was in July of 2009. I was awarded the first place finish in my age group and set a personal record time. Running has given me a way to rebuild my confidence, not due to placing in races, but because I feel so accomplished and proud when I have pushed myself to complete a run or go a further distance.
Added July 2010: I am proud to say that I did qualify for the Peachtree. Not only did I qualify, I was placed in the B Wave! For those of you who are not familiar with the setup, I’ll explain. The higher your start time, the faster the runners are. The order is Invited runners, seeded runners, sub-seeded runners, Wave A, Wave B, Wave C…
So, I was pretty excited to qualify for B wave and a start time just five minutes after the legit runners! I finished the race in 57:37. Not my best, but I was happy with the finish.
“Life can only be understood backwards, but it must be lived forward.”
- Soren Kiericegaard.
This quote carries deep meaning to me as I start my junior year at the University of South Carolina. During my senior year of high school, I wanted to go to FIDM in California and study fashion… until I realized that would actually require me to live across the country from my friends and family. So, I decided I would go somewhere in the South and study fashion. Of course, plans changed and, after following a boy, I found myself decorating my dorm room in Columbia, South Carolina as a pre-business major. Freshmen year I decided I would study marketing and hopefully set up a career in the exhilarating field of sports marketing. Sophomore year continued about the same – still sports marketing and I officially declared my minor as advertising. However, after networking, I realized that I desired a life outside of my job and the professional sports industry certainly was not going to allow this. Lucky for me, the field of marketing is vast!
At the time I started writing this blog, I was unsure of what direction in marketing I wanted to go. The more I wrote about my spine, the more I realized how my journey and experience growing up with scoliosis could have been so very different if my family would have just been presented with more information. Also, my personal battle with the embarrassment and low self-esteem due to scoliosis could have been completely avoided. After the feedback I have received from my friends and family who want me to continue to share my story, I have decided that I want to take it one step farther! When I close my eyes and picture my future- I would love for it to include a career in nonprofit marketing advocating bracing for children with scoliosis. I believe that my zest for this topic, as well as my personal story, would provide a rewarding and fulfilling career. While my love for fashion has quickly dissipated (don’t get me wrong – I still love some “retail therapy”), my zeal for spreading awareness about scoliosis has always been a part of me and I do not foresee that changing. I am extremely excited to say that I have had so many people contact me after reading my blog. Like I said before, this blog is for me and my therapy, but when I receive an email from someone saying they can relate to my story – wow! I cannot even describe how happy that makes me.
Another task on my Bucket List is to plan a race for scoliosis awareness. After tirelessly searching the Internet for races benefiting scoliosis, and not finding a single one, a spark within me has been lit. In my opinion, which may be biased, I do not believe there is enough education about scoliosis. I know for a fact that children, especially in middle school when scanning begins, think it is an embarrassing deformity that will cause them to be shunned by their classmates.
For those of you who don’t know, I am a sister of Alpha Chi Omega. One perk of being in a sorority is having weekly meals (paid for by mom and dad!) in the company of your sisters. You may think a bunch of sorority girls would have pointless conversations – don’t get me wrong, we have discussed everything from the immaturity of frat boys to our hatred of lipstick – but we actually have meaningful conversations from time to time. Last week, as I hurriedly ate my lunch before class, I was shocked when the conversation turned to scoliosis. While normally I love to partake in these conversations, I decided just to listen to what my sisters had to say.
It’s funny to me that every girl at the table, though from different states, could remember the dreaded scoliosis screening day in middle school. One girl talked about how at her school all the girls were practically herded into the locker room, told to take off their shirts, and bend over. I couldn’t help by laugh because I can also remember that day like it was yesterday even though it was almost nine years ago.
Ever since then I’ve been thinking – why does scoliosis screening have to be so embarrassing? Is it because you are already an insecure middle schooler who knows nothing about scoliosis other than it’s the deformity that you have to strip down and bend over to see? I guess I just feel like if children were more informed about what scoliosis is and how the screening works prior to the exam day, people wouldn’t have such a negative memory of scoliosis screening day.
I was one of those kids mortified by the diagnosis of scoliosis and I want to change that. I truly believe I was given scoliosis for a reason and I plan to take action!
If you’re lucky enough to be different.
“If you’re lucky enough to be different from everyone else, don’t change!”
- Taylor Swift
I have recently been asked how I remained “normal” as an adolescent growing up with scoliosis. At first, I thought this would be an easy answer. DUH! I was normal! Unfortunately, life is never that simple. Looking back at my journey, I now see that I was anything but your “normal” middle and high school student.
My first dose of reality hit when I was first diagnosed with the tumor in tenth grade. I told my coach about the tumor privately before practice and took the mats with the rest of my cheerleading team. It did not take long before someone complained about having to do the routine full out (cheer translation: doing the whole routine with all the stunts and all the tumbling) and my coach blurted out, “Ashleigh has a tumor and doesn’t complain!” It was as if everybody on the team looked straight at me and then asked a thousand questions as once; everybody wanted to know the details and the inside scoop. After the interrogation concluded, practice continued, but things were forever changed. Now, whenever I cradled from a stunt, my group was concerned that they hurt my back. When learning a new stunt sequence, my coach wanted to know if I could physically complete the skill. This list goes on and on…
For those of you who have not grown up in a small town, let me clue you in on something. The rumors are true! Everybody knows everything about everyone! Before I knew it, people from high schools miles away started asking about my back at competitions. I can remember one competition when a group of girls on a different team were talking about “that Dacula cheerleader with some kind of tumor.” And of course, my benign tumor evolved into a cancerous one in a matter of weeks.
Even outside of cheerleading my back caused me to be different. I started dating a boy named Michael during my junior year of high school. When I asked him what the first thing he noticed about me was, I hoped he would satisfy my hopeless romantic soul with some sweet nothing about my intelligence or personality. However do you know what he said?!?! My back! You see, he sat behind me in Algebra and like any other student sitting in that dreadful math class – his eyes wondered away from what the teacher was writing on the board. Luckily for him, he was a great guy and I didn’t hold that comment against him. (We went on to date for 2 1/2 years) It still made me wonder, was my back the first thing that people noticed about me?
Although I would have rather blended right into the crowd, based on these few experiences, it was clear that that was simply not an option. So when I was asked this question, I really tried to put some thought into my answer. Like I said before, I wish I could just give the peachy answer that I was normal, but the facts do not agree with that statement. Instead, I focused my attention to what I did in high school to be the most normal me. Most of my actions were subconscious, but here is what some people have told me they noticed.
Be driven. Luckily, this has always been one of my strengths. I like to think that I am a highly motivated person and I think this comes in handy when facing adversity. Like many people going through hard times, there were days when I would have rather stayed in bed and hid from the world. There were many times when I wanted to sprawl out in the school hallway and cry after someone would make a comment about my back. But where would that get me other than embarrassed? I became determined to keep my life as normal as possible. I was the captain of the cheerleading team three consecutive years, I was the editor of the yearbook for two years, and I was a Peer Leader for two years… aka: I put myself out there (not to toot my own horn!) If you hide from the world because your spine is curved or because you are wearing a brace – you are letting the scoliosis win and dictate your life. I don’t know about you, but I was not letting a crooked spine get in my way of life!
I embraced my curve. This is something that I am doing more of in college than during high school. I think Randy Paush, the author of The Last Lecture who was diagnosed with pancreatic cancer, paints a lovely picture of embracing adversity. He gave a speech called The Last Lecture and it was later expanded into a book. Professors often give “Last Lectures” to their students. This is typically a hypothetical “last speech” where the professor is supposed to impart crucial knowledge about life on his students. Randy, however, knew he was dying and had the opportunity to really give a “Last Lecture”. I have to admit – it is the only book to date that has actually made me cry…and then I cried again when I watched the lecture on YouTube. In his speech/book he says, “We cannot change the cards we are dealt, just how we play the hand.” When applied to life, this simple sentence can change everything. Like I have said many times, I could cry and pout that throughout life I had to endure this challenge… or… I can embrace it and play my hand with the cards I was dealt. I do not even need a poker face. I truly am embracing my curve!
Don’t give in. People may (will) talk, the pain may pound, or the embarrassment may overtake your thoughts, but don’t give in! During middle school, I gave in. I was so scared that people were going to find out I had a crooked spine. Obviously if people knew, I would lose all my friends and everyone would make fun of me (insert sarcasm here). However, in high school when I finally started to tell people, nobody really even cared that much. Trust me, people not caring was a VERY good thing in my eyes. I was blown away by how kind people were. I always had people giving me encouraging messages and positive reinforcement. I had to learn not to be the “scoliosis girl” but how to embrace my challenge and become “Ashleigh who happens to have scoliosis”.
Be proud. Only 3 out of every 100 people have scoliosis. If you are one of those lucky 3, be happy – you are different from the other 97 people! Along with embracing your curve and not giving in- be proud! One day in high school, two girls walking down the hall were talking about some girl. Being the “creeper” I am, I started to listen. “…She only wore that yellow shirt yesterday to show off her scar… Ashleigh had surgery…” It did not take long before I realized they were talking about me and my yellow birthday shirt (the day before had been my birthday). My mom took me to Athens, GA to get something new to wear on my special day. I saw this yellow shirt that came down to a V in the front and the back. While I would have normally avoided this type of shirt, I jumped at the opportunity to finally wear something like this. Yes, it did happen to show my scar, but when I thought about what the girls had said – I am proud of my scar. My scar is my story. Meredith from Grey’s Anatomy said it best when she said, “Scars are the signs of a competitor.” So I encourage you to be proud too!
My best friend Shelley and I on my 18th birthday. Notice the infamous “yellow shirt”.
Alter happiness and smile. I recently saw the movie “Love Happens” which tells the story of a man, Burke, who lost his wife in a car accident. One of his coping mechanisms, much like me, was writing. His friend turned his writing into a publisher and three years later he was making a living off conferences dealing with being “A-Okay” after a family member’s death. So how does this relate? Well, one of the chapters in this factious book was all about smiling. Just your simple, run-of-the-mill smile. However, sometimes, this is the hardest thing to do. In the movie, Burke says, “Smile for five minutes every day. After a while, it will become a habit. Happiness is a state of mind.”
I have made this my current personal challenge. I’ll be honest – my life right now is not where I expected it to be, but I am trying to make the best of it. I had my mind set on what “happiness” was and now I am left with two options. A) I can sit in my room and cry until I’m sick (I tried this and all I got was red, puffy eyes and a headache) or B) I can alter my definition of “happiness”. I think this is also true for people (adolescents) dealing with scoliosis. I’m sure you never imagined having scoliosis and would never include it in a list of things that make you happy, but you just have to alter your state of mind. Find new things to be happy about. I can honestly say that I am happy I had/have scoliosis because I can use my journey for the good of others.
I’ve been told that you should never give advice because you don’t know what the other person is going through, but I can tell you this is what I did.
Be driven, embrace your curve, don’t give in, be proud, alter happiness and most importantly, smile! :)