Why Peer Mentor Support is a Crucial Part of Spinal Cord Injury Recovery?

lauren In June 2013, after doing a streamline dive into unfamiliar, dark water, my life was altered forever. I broke 3 cervical vertebrae and sustained a spinal cord injury. Diagnosed as C5 – C6, Asia A complete — meaning I had no sensory or motor function below my armpits — my dreams for the future were incredibly bleak.

Doctors gave me a 1% chance of ever walking again, the Internet led me to dead ends when it came to spinal cord injury recovery, and the discussion of spinal cord injury in the media, such as TV shows and movies, was very grim.

My family, friends, and therapists all tried encouraging and consoling me through this hardship, but to seemingly no avail. My glimmer of hope finally appeared with SCI peer mentors. It was when talking to other people who had been through this life-changing experience that I felt emotionally understood and inspired to change my outlook going forward. 

What Exactly is A Peer Mentor?

mentorA peer mentor is someone just like you. They’ve asked the same questions and faced similar challenges to you. They may not have the answers to all of your questions, but they will listen and provide a perspective that only someone that lives with those challenges can provide.  Shortly after going through a life-changing experience, like a spinal cord injury is, some people with SCI go through a range of emotional feelings such as anger, hopelessness, frustration, anxiety, and or depression, or respond to their injuries in other ways.  Peer mentors may work, volunteer or be a patient at a rehabilitation hospital or activity-based therapy organization. Spinal cord injury peer support groups are a very specific thing.   Now just pairing two spinal injury victims together does not make it a perfect healing relationship.  Effective peer support needs to come from someone that you would want to connect with or hang out with in real-life; your mentor also should be trying to do things in their life you also would want to accomplish as well.  Another way of looking at it is would they pass the  “airport test” — Would you want to be stuck in an airport with this person?    Connecting newly injured or diagnosed individuals with others who not only understand their issues but how to overcome them is extremely valuable. It can change someone’s state of mind, provide a positive outlook and lead to new opportunities that were never thought of or even consid­ered a possibility.   

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Many doctors and therapists can only give you advice on what they’ve seen and experienced. It’s important for the medical community to remember that every injury is very different and everyone’s goals are not the same — two people with the same diagnosis will not have the same goals, outcomes, life achievements, ect.

My first peer mentor experience occurred while I was an inpatient at a rehabilitation hospital. My mentor’s name was Katie, a C5/6 SCI injured when she was 19. When I met her, she was around 30 years old. This woman had a job, lived independently and was involved in her community. Katie was my first real glimpse at what spinal cord injury independence looked like. She helped me realize life in a wheelchair was not limited. My greatest takeaway from our friendship was to focus on the opportunities in one’s life you will never feel stuck or ‘paralyzed.’

The second peer mentor experience occurred when I first started activity-based training. I was surrounded by a group of like-minded individuals who believed that they could do anything they put their minds to.

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                                   Image credit Victoria Arlen.

While it is important to focus on your goals, it is also crucial to find others with similar mindsets. Having a community of people who believe that your goals are possible and that you’re not crazy for thinking outside of the box has helped me grow tremendously, not only as someone who survived a traumatic event, but also as a human being. ~

My one peer Kirk really helped me to understand this. We were around the same age and injured a year apart both at the C5/6 level. In his hey-day, Kirk had been a state champion wrestler. He knew the power of a positive mindset and how to stay on track by focusing on your goals, progress and successes. This friendship has taught me to stay positive and always find a reason to smile (sometimes you can cheer someone up just being happy). ~

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While going through something as exhausting as SCI recovery it can become very easy to see things from a negative viewpoint. Instead, try focusing on your gains and the things that you can do rather than the things you can’t.  ~

Another “peer” mentor I looked up to was “Dancing with the Stars” contestant, Victoria Arlen. Arlen was a former Paralympian swimmer who was diagnosed with a paralyzing neurological condition and an autoimmune disease at age 11.   After suffering through a vegetative state for 4 years,  she has found a miraculous way to speak, eat, walk, and dance.  It is an incredible story and one that deserves media attention! Watching Victoria dance was wildly inspiring and brought me to the conclusion that believing in yourself is one of the most powerful tools you have. ~

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With the internet and social media it is crucial we are aware of what our eyes/minds our consuming. Surround yourself with positive ‘peers,’ whether you know them in real life or just follow them on the web. Make sure they’re uplifting you and inspiring you to be/do the best you can! ~ Here are 3 reasons why reaching out and finding SCI peer support after an injury is one of the best things you will do:    

3 Reasons to find Peer Mentors after SCI:

  1. They help you cope – Although there are many professionals who are trained in SCI rehab, ‘wheel’ life, trauma, and PTSD, there is something to be said for someone who understands what you’re experiencing. That is one of the best things about having a peer mentor with a spinal cord injury: When you receive coping advice from someone who has lived exactly what you have gone through, you know you should listen.
  1. They know tips and tricks for active healthy lifestyles – While you can always search the internet for tips on living with a spinal cord injury, getting it straight from someone who has lived it is invaluable. SCI peer mentors are chock-full of great advice — particular regarding active living. Whether it’s advice on accessible travel, working out (and where to do it after you’re discharged), eating right/diet tips, resuming driving or getting your license, returning to work and school, dating again, or even managing health insurance, a smart, aware and well-informed SCI peer mentor can’t be beat.
  1. They help you regain your confidence – When you meet someone who has their life together and is paralyzed, it’s inspiring and makes you feel empowered. A great example of this can be found in quad rugby. People who play the sport say that one of the best things about it is the peer support. From learning better ways to transfer to just making new friends, being on a team can help is huge ways.

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Conclusion

The best source of knowledge is an experience.  If you’re ready to find a peer mentor, there are several places to look. If you live in the U.S., many high-profile SCI organizations and rehab facilities offer mentorship opportunities. You also can find a SCI peer mentor online through many of these organizations as well.

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