Author Archives: Summer Jefferson

Glee Inspired

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The past few weeks I have started watching the hit show “Glee” on Netflix, and this post was inspired by an episode I recently watched. The episode starts off by gossip being spread about all of the kids in Glee Club by the school newspaper run by the evil cheerleading coach, Sue Sylvester. As all of the glee kids start to feel self conscience about themselves, the directer of Glee Club, Will Shuester, tells the kids that the week’s assignment is self acceptance. At the end of the week they perform Lady Gaga’s inspiring single “Born This Way” while wearing white t-shirts that have their least favorite part of themselves or the part of themselves they feel most self conscience about written on it. The amazing cast of Glee finish the song and the screen goes black and the credits start rolling, ending that episode of Glee.

The point of me giving you a summary of that episode of Glee is that our scoliosis is something that we can feel self conscience about sometimes, but we can own it and be proud. Just like the Glee kids’ t-shirts, we don’t have to hide our scoliosis; we can show it off to everybody and say” Hey! I have scoliosis and a brace” or “Hey! I have scoliosis and I have had surgery!” So I leave you with this advice: Be proud of who you are and be proud of your scoliosis!

Exciting news!

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I just had an amazing phone call with Ms. Mary Lou Oliver RN, BSN, MSPH about a prospective meeting place for my Curvy Girls group in GA. I can’t wait to see what will come into fruition from the phone call. She even mentioned the possibility of me speaking next fall at a Scoliosis Screening Conference! It’s so nice to know there are caring people like her in the community.

Sunday

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I was looking outside my window today and my Grandad came to mind. He was a man who loved his family, the law, the South Carolina Gamecocks and his church. He passed away August 25, 2012. It has been a little over a month since he left us. I knew my grandad as a man of faith who believed all things are possible when you walk with the Lord. He also believed in the power of prayer. Since today is Sunday, I guess that is why he especially came to mind. If I had to guess, I would say that Sunday was his favorite day of the week. I never knew of him to miss a mass at his church. Even when he and my grandmom would come to visit us, which is a four hour drive each way, he always made sure they would leave my house early enough to make it to mass at his church on time for that week. When he was diagnosed with cancer he was still very optimistic, and I knew he knew Jesus was by his side. I also knew that as his painful illness progressed and he was unable to go to church that he really was sick, as church was very much a part of his life. He was a very outgoing person who met no strangers with a booming voice that greeted you along with a quick hug or handshake. Right after he got sick, I remember my mom saying that he had told her when my scolisis had gotten worse and we were going to try a new brace for me called the L.A. Brace that I still wear and learn Schroth Therapy which was new for me at the time that he knew I was going to get better. He told her that he was and had and would continue to pray for me and my scoliosis. He said that he knew prayers were answered as he had had prayers answered and he believed this one would be answered. He had faith. I know Grandad did pray for me along with alot of other people who still do pray for me. I am so thankful for all of them. I believe Grandad was right. I feel those prayers are being answered as my scoliosis is better. My back in x-rays doesn’t even look the same. I know that it will never totally go away, but it is so much better, and I am not in pain. I have been blessed with some earthly angels that have helped with this journey. I have my family who have helped me get the treatment I need, Ms. Joanie Stewart my former ballet teacher who discovered the scoliosis so I could begin seeking help before it worsened, Gez Bowman the most unbelievable orthotist and Beth Janssen, Elizabeth Garrett, Nancy McVeigh and Patti Orthwein my Schroth therapists and my pediatrician, Dr. Joan Cheshire who is more than a doctor, but long-time friend. They have all been honest with me while never giving me false hope. They have each shared their wisdom, expertise and tireless help. I think that Grandad just didn’t know that when he along with everyone else who has been praying for me that part of the answer was in sending these earthly angels my way. Each of them is alot like my grandad when I think about it. They are all passionate people who believe in what they do and are doing it because they truly want to help people like me. Grandad was very passionate about his work, hobbies, family and faith. That is one adjective that I believe describes Grandad well…PASSIONATE. I am so thankful to have had a grandad that has shown me the power of prayer and his passion for life. I look outside today as the rain is peacefully falling on this Sunday evening and I can almost imagine his voice calling my name in his booming Charleston accent. He owned that sound and it was so much a part of him. Thanks Grandad for those prayers! I know they were answered as I am proof as I stand taller! With my newfound height, I just hope I can help others in their plight against scoliosis and let them know that we can beat scoliosis with early diagnosis, medical advances in therapy, braces and surgery. We don’t have to be scared and in pain. Yes Grandad, I did inherit something else from you too. That is called passion. Maybe I have just found mine. I love you!!!

Frustration

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I have been so busy lately. I have been trying to get my Curvy Girls flyers out at different doctor offices around the North GA area. Who knew it would be so hard to find doctors that would participate? It’s quite frustrating!

If you know anyone who has scoliosis and would like to talk about how they are feeling or what they are going through, tell them to find a support group like mine. Talking about it makes the world of a difference! I know from my experiences at the Curvy Girls Convention.

Curvy Girls Convention

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The convention was so much fun! I met so many influential people such as Joe O’Brien(CEO and President of the National Scoliosis Foundation), and Dr. Oheneba Boachie-Adjei, (founder of FOCOS or Foundation of Orthopedics and Complex Spine). FOCOS is an organization which operates on children in Africa with extreme spinal disorders, giving them the care they need. I was also able to see again Beth Janssen, who introduced me to Schroth at Scoliosis Rehab Inc. in March of 2011. I also was fortunate to meet Luke Stikeleather, Mike Mangino, and Grant Wood (Orthotists), Dr. Ronald Snyder(Pediatric Orthopedist), and Dr. Michael Vitale (Chief Pediatric Orthopedic Surgeon of New York-Presbyterian Morgan Stanley Children’s Hospital/Columbia University Medical Center). Meeting these people was so inspiring as it is evident, that each have their heart in their work. Seeing and hearing about the work they have done to help others with this disorder and the studies they are doing and funding to prevent it was amazing!

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Beth Janssen and me. Beth is a physical therapist from Scoliosis Rehab Inc., who teaches Schroth therapy to scoliosis patients.

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The opening screen at the Convention registration and welcoming.

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Joe O’Brien, the CEO and President of the National Scoliosis Foundation, and me. Mr. O’Brien talked to the other girls and me about advocating school screening of scoliosis in our state public schools. He was such an informative speaker on the various subjects regarding scoliosis.

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The chef of the hotel where the Convention was held, surprised all of us Curvy Girls with a special sugar cookie, decorated with the Curvy Girls logo.

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From left: Myself, Rachel Mulvaney, co-leader with Leah Stoltz of the Long Island Curvy Girls group, and Terri, Rachel’s mother. When Leah and her mother sent out flyers for the Curvy Girls group, Rachel was the first to call Leah and her mother about joining the support group.

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From left: Leah Stoltz, founder of Curvy Girls, myself, and, Mrs. Robin Stoltz, Leah’s mother. Leah started the first Curvy Girls group in her hometown of Long Island, NY. Now it has spread across the nation in different states, into Canada, and of course GA, where I am starting the first GA group as a leader.

Gearing up for the Curvy Girls Convention!

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I arrived here in New York yesterday. My mom and I went straight to the hotel to rest up for the Curvy Girls Convention that starts today. We are currently staying on Long Island in an area called Center Island because it is literally the center of the island. Isn’t it ironic that we are all on center island. If only our spines would stay in the center of our back! Come back and read my blog later!

Aside

I’m back from Phoenix, Arizona, where I had my fourth Schroth therapy session for scoliosis, and my goodness, the heat was awful! I would have loved to blog about my experiences daily while there, but I didn’t have the access to a computer I needed in which to blog. As a southern girl from Georgia, used to humidity, the “dry heat” was horrendous. Of course my mother and I were inauspicious enough to land our therapy appointments in May with 108 degree weather. My physical therapists, Elizabeth Garrett DPT and Nancy McVeigh PT at the Phoenix Scoliosis Rehab location, were wonderful as usual! For those of you who don’t know, Scoliosis Rehab also has a location in Stevens Point, Wisconsin, to which I have also been, which is where I saw Beth Janssen PT and Patti Orthwein PT. Beth is who started Scoliosis Rehab after learning the Schroth therapy method. Unlike the other trips, which focused on teaching me new Schroth exercises, this trip was focused on critiquing the current exercises while adding only two new ones.
The week started out with us packing and finishing school to get ready to fly out on Sunday, May 20, which, by the way, was my 14th birthday! Once Sunday came, my mom and I finished packing our personal items and headed to the minivan with my dad and nine year old brother. They were taking us to the Atlanta Airport. Our flight landed that night in Phoenix at 9:00pm. And for that reason I had a 27 hour birthday! Because of the time difference, it was already 12:00 am at home on the east coast, but in the Pacific Coast time zone, I still had three more hours to celebrate!
I knew I was in for it because I was already perspiring during the small jaunt outside to the car rental bus. After we got our car, we headed to the hotel to spend the night. The next morning, still on east coast time, we woke up at 6a.m. I wasn’t due to therapy until 12 noon Pacific Time so my mom and I decided to take advantage of the free time we had before the true fun of the week began. We stayed at the Hilton located at the airport and due to our location at the time we decided that the Phoenix Zoo would be a great side trip since it is also located near the airport. We checked out of the hotel and were at the zoo when they opened at 9a.m. We were already sweating!!! I am a photo bug so, of course, my camera was in hand. I got some great shots before even entering the zoo, of the mountains that are around Phoenix. They are gorgeous, but very different from our mountains in Georgia, which are loaded with green trees and bushes. For their mountains to be almost totally bare, they are still beautiful. The difference in the landscapes of just our country alone reminds me of the depth of God’s creativity.
The Phoenix Zoo is unique in comparison to the Atlanta Zoo in that they only have animals from around the world that are native to their type of dry and hot climate. Of course, I took many pictures of these animals. My special picture was of my favorite land animal, the cheetah. I have loved and admired the cheetah all my life. This was my first time of getting to see one in person, and it truly was special. They have two male cheetahs that are fully grown. I had two “aha” moments while at the zoo that I shared with my mother. I would like to share it with you as well. Although I have read many books, watched plenty of documentaries where I have seen loads of pictures of cheetahs, the thought came to me while looking at them in person. As you probably know, all cheetahs are individually unique from all other cheetahs, in that their spots are unique to themselves, making each an original. I thought how true this is of scoliosis. We who suffer from scoliosis know that we are also unique in the sense that it can strike us all at different ages growing up. My curve is probably very different from yours. Mine might be stopped with treatment, or it might continue to develop into adulthood. The only thing we have in common is that we all will live with it for the rest of our lives. Spots make cheetahs alike just like they make them different. As they roamed their expanse of land, you could see the strength behind the relaxation. I feel I am a stronger person also for the experience I have endured, and not just physically, from my therapy and brace, but I think I am emotionally stronger.
As I mentioned, I had two “aha” moments while at the zoo. The other came as I was looking at the giraffe. He has such a long spine. He was standing so regally straight with his neck stretched tall and long so as to eat leaves off a tree. I wondered what he would look like, if he had my diagnosis, as he stood with such great posture. I don’t know if you know or not, but the giraffe is the animal that the zebra, gazelle, etc. look towards for a sign of danger in the wild. Since they are so tall they can see the predators before the other animals can, so they are their guardian angel in a way. When the giraffe begins running, the other animals know they must take off running as well. It made me ponder the thought of how nice it would be if people with scoliosis had someone or something that could warn us of our impending change in our spine so we could seek help at the earliest possible notice. We all know the earlier we seek help, the better for us, as our curves in our scoliosis spines can change quickly. It is not the type of medical condition that you wait and think about, for as you are waiting, it can be worsening. It is a scary time when you are diagnosed and you are not sure which way to turn. It is not like the flu, where a doctor knows just what to do, and you will be over it soon. I know I am a cheetah with my own individual scoliotic spots, but I am strengthening myself physically, emotionally and spiritually, so I can deal with whatever my scoliosis throws my way. It is a club I was forced to join and truthfully one I wish I didn’t have to, but since I am a lifetime member, I plan on making the best of it for myself and others by educating myself mentally and physically. I do, however, wish I had had a giraffe peering out for the dangers that came my way on this journey. The more I looked at these two creatures I knew that I wanted to be like both, myself. I have no choice in my scoliosis like the cheetah has no choice in his spots, but they are still beautiful creatures working very hard to carve out their survival in this big world, which is what I am trying to do each day on my scoliosis journey as a teenager. I do have a choice in that I want to be a giraffe and warn others of the dangers and signals of scoliosis. If I can help others, it is my way in thanking all of the wonderful people my mom and I have met along the way that have helped me find what works for my particular scoliosis. So I hope you will come back and read my blog as I post new happenings, and maybe it will be helpful for you, too.

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