For the July 12th, 2013 NonProfit Commons meeting we featured Sami Petersen (SHIFTscoliosis in SL), who presented on her personal journey, her organization’s mission and the power of digital storytelling. Sami was diagnosed with scoliosis at the age of 11, underwent spinal fusion surgery at the age of 15, and now at the age of 16, is the founder of the nonprofit SHIFT Scoliosis. Her experience inspired her to give back to the scoliosis community and help others, while spreading awareness and educating others about the condition. She started SHIFT Scoliosis in order to make those goals come true. SHIFT Scoliosis’ video won for the Best in Health category in the 2013 TechSoup Digital Storytelling Contest.
• Sami’s scoliosis story: http://youtu.be/8O1Q62RH_OU
Below is an edited transcript of the presentation and you can read the full transcript at: https://docs.google.com/document/d/1YpRKGjfjB3n6bYdwlPclQ5NrYk01wSSIxWtIE4yi0sM/edit
Buffy Beale: Cheering loudly!
alebez: yaaaaaaaay! sami!
Gentle Heron: Welcome Sami
Zinnia Zauber: Rah Sami!
Sami Petersen (SHIFTscoliosis): Thank you so much:)
Joyce Bettencourt (Rhiannon Chatnoir): welcome Sami and start when you are ready!
Sami Petersen (SHIFTscoliosis): Imagine being a child who has been living in a body that is changing & hurting & slowing you down. You can’t play like the other kids. You can’t stop it from changing. Your parents worry. People stare & laugh at you. Doctors offer to help you and your parents agree to treatment. This is all so new. It is scary! You play with your fingers & shiver. Will it be okay??
SHIFT Scoliosis believes every person is beautiful and perfect just the way they are regardless of whether or not they have health problems. Our goals are to provide information and support for individuals and families who are impacted by scoliosis. Our second goal is to provide education to those not touched by scoliosis to create a strong and supportive world community. By promoting knowledge of scoliosis and how it impacts those who are affected, we hope to encourage a better understanding of this condition which changes the lives of so many.
SHIFT Scoliosis has launched SHIFT image, a project which will aim to promote the self-esteem of people who have scoliosis by capturing beautiful, professional pictures of them. SHIFT image will also create personalized videos of individuals’ journeys with scoliosis. Photography and video images create a more objective concrete way to see an individual for who they really are. Because we believe that comfort and support should be given to everyone regardless of economic status. We are giving concrete comfort items to children and their families who live in impoverished conditions and who have limited access to healthcare. SHIFT started this project to help bring comfort to our families during the stressful times each of us endures on our scoliosis journey.
As part of our mission, we want to reach out around the world to educate and support. So for each worry stone that we sell, another stone will be given to an impoverished family dealing with scoliosis. This will be a family helping family connection and another way to build a global community. We also plan to launch a parent education campaign to promote parental awareness of early scoliosis signs through educational materials and outreach. SHIFT scoliosis acknowledges the importance of school screenings and seeks to support the movement to make sure school screenings continue to happen.
We want to SHIFT the way that scoliosis is currently viewed and show the world, and especially people with scoliosis, how beautiful life with this condition can be. Let’s join together for this effort because we are all united by this condition. Scoliosis doesn’t pick favorites because it is universal. Only together we can shift the way the world sees scoliosis! So that is our mission.
Now I want to tell you about me and why I started SHIFT. SHIFT stands for Support, help and instruction for transformation. I started SHIFT shortly after my spinal fusion surgery to correct my 60 degree scoliosis curve. Scoliosis is a side to side curve in the spine. It affects 2-3 out of every 100 people, but only a tiny fraction of those progress to the point of needing surgery. I was diagnosed with scoliosis at age 11 during a school screening. At the time I was a very competitive swimmer and wasn’t going to let scoliosis get in the way of my goals and dreams of becoming an Olympic swimmer.
Over the next few years my scoliosis got worse and worse, and I became unable to swim at the age of 13 because my back pain was too severe. At 14 I was put into a back brace, which I wore for the next year and a half. Despite wearing it 24 hours a day; seven days a week, my curve continued to progress. In addition to pain, I suffered from embarrassment because of my curve. I didn’t want to tell anyone about my scoliosis because the stereotypical look of those with scoliosis. I hid the fact I had scoliosis for years, but finally decided that I wanted to share. I wanted to change the way that scoliosis is looked at, because there is nothing to be embarrassed about.
Despite all our efforts to control the progression of my curve, surgery was the only option left. I was not very nervous, more excited about how much better I would feel after my operation. I was beyond joyous that finally, after years of having so many health problems, I was going to feel better!
Shortly before my surgery I started a blog to document the progress I had made through recovery, but more importantly to show the world that scoliosis is not something to be embarrassed about and surly isn’t something to hide. Within just a few days I already had hundreds of followers and overwhelming support from people all over the world. I had people from all over who were asking me questions about scoliosis, telling me how grateful they were that I was sharing, and some even telling me that I was the first person that they told about their own curves.
On September 12th, 2012, I underwent full spinal fusion surgery to correct my curve. I went to an amazing hospital in NYC and was fused from T3-L4 and spent 6 days in the intensive care unit, and two additional days in the regular hospital. I felt so lucky to have such amazing help and support from my family. We live three hours away from the hospital and even with it being hard to not have the comforts of home; they were all there for me. We are a team! I also felt so lucky to have such an amazing surgeon and for all the other doctors, nurses and staff who helped correct my curve from 60-9 degrees, and who made my recovery go so smoothly.
After my surgery I felt so much better in countless ways. The whole experience inspired me to help other people like me who are dealing with scoliosis. I decided that I wanted to take it a step further than just blogging and that is when SHIFT was born. Since then I have already made some really amazing accomplishments and met a few of my many goals. I made a video of my scoliosis journey – documented through pictures. It is about 7 minutes long, so I am not sure if everyone has time to watch it right now, but here is the link to that 🙂 http://www.youtube.com/watch?v=8O1Q62RH_OU
As part of my tech soup digital story telling contest entry, I collected photos from kids and adults all around the world who also have scoliosis. The pictures in this promotional video include those from Canada, South Africa, Poland, United Kingdom, Australia and the USA. I put them all together to show that scoliosis is universal and can affect anyone of any age, but also that even with scoliosis, people are still just as beautiful, perfect and strong as they would be without the condition. Here is the link to the video that won Best In Health for the storytelling contest: http://www.youtube.com/watch?v=lgSmkAzbVLc
James at Lloud (lloud.laffer) is watching and admiring this videos!
Joyce Bettencourt (Rhiannon Chatnoir): what was that process like, collecting other’s stories? and must have been powerful having others share.
Sami Petersen (SHIFTscoliosis): It was amazing to collect their stories and photos. To see the transformation in these people who had gone through so much was just remarkable
James at Lloud (lloud.laffer): Wow, the videos are so effective.
alebez: hiya everyone. and i’m so amazed at sami’s story.
Leko Littlebird: Beautiful videos, so inspirational. Thank you so very much for sharing
Sami Petersen (SHIFTscoliosis): Thank you so much!
Joyce Bettencourt (Rhiannon Chatnoir): and as a btw, that is the video you entered into the TechSoup Digital Storytelling challenge, yes?
Sami Petersen (SHIFTscoliosis): Yes the second one is 🙂
Beth Ghostraven: storytelling is such an effective way of sharing information!
alebez: We screened her story at the Awards Ceremony and Gala at the end of May.
Joyce Bettencourt (Rhiannon Chatnoir): she won an award within the Health category for it.. and thanks to Ale (alebez) here today who helped organize and even hosted the real world awards ceremony
Beth Ghostraven: Sami, yours is a great example of that
[09:40] Sami Petersen (SHIFTscoliosis): thank you so much everyone!
Gentle Heron: Thank you for sharing your story Sami.
James at Lloud (lloud.laffer): Stories are our culture and community.
Beth Ghostraven applauds loudly!
Frans Charming applauds
Eme Capalini: Great job presenting too!
Zotarah Shepherd: Wow Thank you Sami.
Sami Petersen (SHIFTscoliosis): At SHIFT we have lots of opportunities for volunteering 🙂 Right now we have a project called snuggles for scoliosis where we are trying to raise money to send pillowpets to children in other countries who are going through surgeries
James at Lloud (lloud.laffer): Can I ask – what video software did you use?
Sami Petersen (SHIFTscoliosis): I used microsoft movie maker
James at Lloud (lloud.laffer): Oh excellent! A personal and low cost software. What a great example for everyone.
Joyce Bettencourt (Rhiannon Chatnoir): your story is great in showing how one person sharing their story can not only empower themselves, but help others to do the same 🙂
Tava Longfall: Thank you for coming Sami
Sami Petersen (SHIFTscoliosis): Thank you all for having me today! Feel free to ask me any questions- I am more than happy to answer:)
Gentle Heron: QUESTION- How do spinal fusions work with your physical growth? Didn’t you get taller after the fusion?
Sami Petersen (SHIFTscoliosis): I got three inches taller after my surgery because height I had gained grew into the side to side curve in my spine. I tell people I had the fastest growth spurt ever- 3 inches in 6 1/2 hours!
Gentle Heron: I meant growth from child to adult, though.
[09:47] Sami Petersen (SHIFTscoliosis): For children who are not done growing, they wait to do fusion because the fusion would limit their growth. They use braces or growing rods. Growing rods are rods that are placed into the spine and every 6-8 months they are adjusted as the child grows
Joyce Bettencourt (Rhiannon Chatnoir): so with your fusion surgery, they expected your growth in height was over
Sami Petersen (SHIFTscoliosis): Yes. I was done growing before my surgery so it wont make a difference for my overall height 🙂
Oronoque Westland: Your talk made me think of all the parents who yell at their kids to sit up straight…possibly yelling at kids with undiagnosed conditions
Beth Ghostraven: oh, good point, Oro!
Sami Petersen (SHIFTscoliosis): Yes, very true! Diagnosis at an early age is so important! Speaking of early diagnosis I made this to help people learn the signs of early scoliosis: https://www.facebook.com/photo.php?fbid=294339837369098&set=pb.175692542567162.-2207520000.1373647908.&type=3&theater
James at Lloud (lloud.laffer): Sami, do you think you will make more videos?
Sami Petersen (SHIFTscoliosis): Absolutely!
Joyce Bettencourt (Rhiannon Chatnoir): great to hear!
James at Lloud (lloud.laffer): That’s great – SHIFT could provide a Youtube channel for the scoliosis community.
Sami Petersen (SHIFTscoliosis): That is a great idea! We have a channel, SHIFT scoliosis, and already have some followers on there. 🙂
Joyce Bettencourt (Rhiannon Chatnoir): any advice for others wanting to add videos and digital storytelling into helping with their nonprofits or other programs?
Sami Petersen (SHIFTscoliosis): Yes – I think that when you make the video you have to imagine how you want it and then just have fun.
Zotarah Shepherd: Does the fusion surgery mean that when you are elderly you will not have to worry about a tiwsted spine like many other old folks – like my mother – have?
Sami Petersen (SHIFTscoliosis): @Zotarah– yes. Now that my spine is fused I wont have to worry about it curving at all in the future
Zotarah Shepherd: Thanks Sami, I am glad for your future and amazing way you lift people now. You are so brave.
Zinnia Zauber: This is wonderful! Thank you Sami!
Tori Landau: Sami, you are an inspiration!
Sami Petersen (SHIFTscoliosis): Aw thank you so much! 🙂 You are too kind!
Joyce Bettencourt (Rhiannon Chatnoir): and any last advice for those wanting to add video and storytelling to their projects?
Sami Petersen (SHIFTscoliosis): I think that having fun and staying positive is so important. I practiced a lot too before I made any real videos for SHIFT that way I was comfortable with the software. That helped a lot
Glitteractica Cookie: thanks again
Glitteractica Cookie: gotta run folks, bye all
Joyce Bettencourt (Rhiannon Chatnoir): take care Glitter
[Zinnia Zauber: Bye Glitter
Sami Petersen (SHIFTscoliosis): By Glitter! Thanks!
Joyce Bettencourt (Rhiannon Chatnoir): Sami It was great having you present today – let’s all thank her!
Chayenn: thank you great presentation
James at Lloud (lloud.laffer): thanks!
Beth Ghostraven: .-‘`’-. APPLAUSE APPLAUSE .-‘`’-.
Tava Longfall: Thanks for coming Sami
Gentle Heron: Thanks Sami. Well done and best wishes.
Beth Ghostraven: Thanks, Sami!
jacmacaire Humby: Bravo!!!
Zotarah Shepherd: Thank you so much Sami. You are inspiring! All the best.
Frans Charming applauds
Zinnia Zauber: Thank you Sami!
alebez: Thanks, everyone! And thanks, Sami! You were great.
Leko Littlebird: Thank you
Zotarah Shepherd applaudes wildly.
alebez: That was great, Sami. Thanks for joining us today.
Oronoque Westland: Great presentation
Sami Petersen (SHIFTscoliosis): Thank you all so much for having me! Thank you so much everyone 🙂 You can visit my website at www.shiftscoliosis.org 🙂 and follow us on facebook at www.facebook.com/samisscoliosisstory
If you took pictures during the event, please share them on our Facebook group: https://www.facebook.com/nonprofitcommons or G+ Community: https://plus.google.com/communities/114212078390326305687, please tag them #NPSL and tag your avatars in any photos posted!
Written by: Rhiannon Chatnoir