​The Power of Sharing - Reeve Foundation

Often, it feels like we are alone. How many times have you been out to a restaurant, a concert, a business meeting, or a play, and you are the only one in a wheelchair? How often do you feel people are looking at you in the grocery, not knowing how to act?

Having a spinal cord injury can be isolating and depressing. We often think no one knows how we feel. But having spent two days at the Reeve Foundation Summit in Washington, DC, I can tell you that we are not alone. We have a lot to teach each other and to learn from each other. In my last blog, I wrote about the Summit presentations by experts, which were full of useful information. But the sessions presented by other individuals with paralysis and our informal conversations, are what will really stick with me.

There was a particularly powerful session, led by a young man, Leon Ford, who was shot by police 10 years ago. He spoke about finding grace, finding forgiveness and finding his own balance in life in the years since his shooting. He talked about the role of therapy, and the role of friends and family in restoring his peace of mind. I was moved by his honesty and his willingness to share his story. While grateful I was not shot, I felt we shared much in common. He talked about what we all have gone through in one way or another – the fear, the chaos, the desire to shut down emotionally to blunt the pain, or to lash out in anger. But he said he reached a point where he wanted to feel every emotion, recognizing that they are all a part of being human, and that they would make him stronger. He said, “The biggest fight of my life is inside my head”, and he and I talked one-on-one about the struggle to stay positive. And we bonded over our mutual determination to live full, happy and fulfilling lives no matter what our physical condition.

This young man also spoke about his journey from surviving to thriving. Many of us in the room shared our own self-care techniques which help us live our fullest lives: meditation, exercise, journaling, breathing exercises, enjoying or making art, music, and theater. As individuals told the stories of their lives since they were injured, we all felt like we had found our family, others who share our history and our emotions as no one else can. Imagine being in a room with others in wheelchairs, sharing experiences and personal stories. It was moving, powerful, and inspiring. We came out of the room lifted by each other, buoyed by the knowledge that we are NOT alone. The coming together and sharing of life experiences and stories at the Summit was a feeling I will never forget.

Serving as a Reeve Foundation Peer Mentor, I have learned that we all have the capacity to help others with spinal cord injury. By sharing our own experiences and resources, we can help adults and children who are facing similar challenges. If you need that kind of support, or if your family members do, request a Peer Mentor. This will set you on your way to a healthier life. No two stories are identical, but we are not as alone as we sometimes feel. There are others who have been through experiences very similar to ours.

We are a vital and dynamic community of people who share spinal cord injury, our families and caregivers. We are stronger than we imagine. So, reach out. Find each other. Ask questions. Share your story and your knowledge. Open up to others with similar injuries. You will find strength, care, and connection in their stories, and in sharing yours.

Howard Menaker is a retired communications and public affairs executive, with over 30 years of experience in international corporations and trade associations. Previously, he worked as an attorney, specializing in civil litigation. He now devotes much of his time serving on non-profit boards of directors, including a prominent theater company and a historic house museum in the Washington, DC area. He and his husband split their time between Washington and Rehoboth Beach, DE.