The SCI Survivor Survey

What does it mean to survive a Spinal Cord Injury (SCI)? What systems are in place to assist and support SCI survivors days, months and even years after their injuries? How do SCI survivors deal with the many life-changing challenges they face following this injury? What are those challenges and, most importantly, what can be done to address them in order to help and improve the lives of those of us who have dealt with this injury?

All of these, and many more, are the questions that the SCI Survivor Survey seeks to explore.

A little background: After my own frustrating experience with the availability (or lack thereof) of resources, support systems and options for recovery in the initial weeks and months following my accident, I decided that at some point in the future, I would want to do something to help other SCI survivors. When I heard the experiences of others, I was simultaneously horrified – I couldn’t believe how consistently various people in the medical system were discouraging and reluctant to provide hope to these people and their families – and relieved – because I learned that I wasn’t the only one out there facing these frustrations and challenges.

Recently, a couple friends and I started discussing what the biggest challenges are for SCI survivors and brainstorming the most helpful solutions. They knew my story – after all, they had been there to support me from the beginning – and I had a sense of what those challenges were based on the anecdotes I’d heard from others. But we decided that before we could explore the idea further, and in order to have a more accurate understanding of the most beneficial potential solutions, we wanted to hear from more SCI survivors. Thus, the SCI Survivor Survey was born.

Our goal now is to get as many responses as possible from anyone who has suffered a Spinal Cord Injury. The survey is purely informational and completely anonymous. All questions are optional and the responses we get will only be used to shape the direction of our efforts and guide our primary objective: to help as many SCI survivors as we can.

So in case I haven’t made it clear yet, I’m asking for your help! If you are an SCI survivor, please fill it out yourself and share it with as many other SCI survivors as you know. Otherwise, please forward, email, link, send, snail mail, tweet, carrier pigeon, make smoke signals, use morse code, talk through tin cans, and share the following link with someone has dealt with SCI. I’m grateful in advance for your help and promise to keep you updated on the progress of our efforts.

SURVEY LINK: http://bit.ly/1hf7TcC

18 thoughts on “The SCI Survivor Survey

  1. What a great idea.
    Hope lots of people take the time to reply. I think that’s an issue that many patients face (in other chronic or serious medical conditions).
    Lack of support, lack of resources (in a central database) etc. – but limiting a patient’s expectations has to be one of the worst.

  2. I wish you luck. I have fibromyalgia which is a central nervous system disorder characterized by chronic pain and fatigue. This in no way compares to SCI except I believe the psychological and emotional issues would be very similar. I spent a lot of time reading and writing about these issues because there was so little written when I was diagnosed. If you are interested you can find them under fibromyalgia on my blog. My heart goes out to you and wish you healing, even when recovery probably isn’t an option.

  3. Is this a US-focused survey? My neighbor (half Iranian and half French in fact) is amazing. One of her projects is to provide tours to Europeans (maybe others too) with physical limitations. She has access to many SCI individuals from Europe. Is that helpful? I can put you two in touch.
    Are you reaching out to places like this? Would it be helpful to volunteer some hours to share the survey at various locations like this? Do you have a list already?
    http://dsp.berkeley.edu/
    http://www.cilberkeley.org/
    Also, we can raise an ad budget for Facebook with certain criteria and if folks click on it you pay and x amount. You can set the amount and you bid with others for the ad spot.
    A great place to start!

    • Those are all great ideas! It’s not a US focused survey in fact, so if you know anyone, anywhere who has suffered a SCI, please pass it on. I would definitely like to connect to your neighbor. I’ll look into those other places you suggested. Thanks as always! -AB

  4. Arash, I have been following your story and am so inspired by your bravery, honesty and determination. The medical establishment can be so very discouraging, negative and lacking vision, so what you are doing is fantastic. I will spread the word about this survey and stay tuned for your next communique,
    love,
    lynn

  5. Great idea, Arash. You are going to be a stimulus for change and are already breaking ground for SCI survivors… As a side note, did you hear about Martyn Ashton’s accident? He is/was an amazing bicycle trials rider. I’ve never seen someone more talented and was devastated to learn about his injury, as I was yours.

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