Think back to when you were first injured and how you felt. No doubt you were overwhelmed, scared, and probably a little lost among thoughts of life in a wheelchair. Now consider how you might have felt if someone with a similar injury had come in and answered your questions. Surely it would have helped you cope and reduce those overwhelming feelings.
At the Christopher and Dana Reeve Foundation we are trying to make sure someone who has shared the experience with injury -- a peer -- will be there to help those dealing with spinal cord trauma. The national
Peer and Family Support Program (PFSP) is just getting rolling and my new job is regional coordinator for six states; there are five other regional coordinators around the country. We are currently recruiting peer mentors, men and women of all ages and locations with various injury levels/spinal diseases (cerebral palsy, MS, spina bifida, etc.).
The idea is to provide one-on-one support to anyone, new injury or old, who would like to talk to a mentor. Being able to talk to someone who shares your circumstance can open the mind and body to so many things. Also, talking to someone experienced with his or her injury can help you get to know what works and what doesn’t.
We are also looking for family and caregiver mentors because, let’s face it, a disabling disease or injury affects everyone involved. If a caregiver needs a mentor one will be provided, in addition to one for the person who has the disability.
The peer mentoring program certifies all peer mentor volunteers at a training provided by the Reeve Foundation. We want our mentors to be the elite of the elite; you need to pass a test on basic knowledge, and you must pass a background check.
Peer mentoring is not commonly available if you don’t get admitted to one of the big spinal cord injury hospitals. I think back 17 years ago when I got paralyzed and how it would have been nice to see anyone my age in a wheelchair. During my three months in rehab I was surrounded by elderly people who had strokes or broken hips. It was a few years before I saw another woman in a wheelchair. Teenage years are incredibly hard anyway, and then to be one of the only girls in a wheelchair in my high school, it was difficult. I would have loved to talk to someone my age, my injury level, and asked her the million questions I had going on in my head. I didn’t really know how to ask someone who was able bodied because all the schooling and medical knowledge doesn’t help if one doesn’t deal with paralysis on a daily basis.
I finally started to get peer support through online means years after I was hurt. Whether it was a spinal cord injury message boards, joining the Christopher and Dana Reeve Foundation website, etc. it helped talking to people like me. I got a wealth of information, a lot of laughs and formed new friendships. I’ve met many people from these websites when I have traveled. Through this I have been able to talk about things that I just can’t talk about with my abled bodied friends -- there are some things that need to be discussed with another wheeler friend.
This is what we are hoping to gain from the PFSP. Someone you can talk to, someone who understands what you are going through, there to listen and answer any questions, totally confidential.
I have been mentoring for a few years now and it is one of the most rewarding experiences I have had. Sometimes a person just needs someone to talk to, to forget about therapy for the day. Whatever it may be I m available, there to listen and to help when I can.
If peer mentoring is something you would be interested in doing, fill out the form on the
Peer and Family Support Program page. If you would like more information one of the regional coordinators in your area would be pleased to help. I’m here to answer any questions you may have too, just drop me a line in my inbox. I hope some of you will consider becoming mentors and share your experience and your knowledge.
