Finding a Way to Move Forward
as told by Jose Hernandez
If there was a list of the top 10 things to avoid in life, a spinal cord injury has to be pretty close to number one but life is all about challenges – some you choose and some you don’t. You still have to find a way to deal with them. I should know. I broke my neck the summer before my 15th birthday and spent the next 17 years trying to understand and accept what happened to me. What I learned is that sometimes just moving forward is the biggest challenge. Let me start by telling you my story from the beginning.
Difficult Family Life
My mother was diagnosed with terminal ovarian cancer and given only six months to live at age 28. With treatment, she survived for a time but extensive surgery included the loss of her lower intestine and entire bladder. She had to catheterize through an opening in her belly and use a colostomy bag for the remainder of her life. My parents separated when I was eight years old and my mom struggled to raise me and my younger brother and sister as a single parent.
Snap…just like that, I suffered a spinal cord injury.
On June 19, 1995, tragedy struck again. It was a beautiful day. I can remember it now as if it were yesterday. The temperature was 90° so my brother and I decided to join a group of friends at the beach after school. After having a good time and running around as a teenagers do, my friends decided to dig a hole and bury me up to my neck. Then about 6:30 PM lifeguards gave a warning that the beach was about to close. I burst out from the hole and—with a surge of adrenaline—I leaped into the water not realizing it was shallow. Snap… just like that, I suffered a spinal cord injury and my life has never been the same.
I pretended that nothing was ever wrong.
There I was, quadriplegic with a C-5 spinal cord injury; a teenager still trying to figure out who I was and what I wanted in life, totally dependent on others to accomplish the most basic and simple tasks. Even at 15 years old, I knew my mom was going to be destroyed by seeing me unable to handle my disability; so for many years I pretended nothing was ever wrong. I need to be strong for her.
After my mother passed away in 2002, I kind of lost my way and spent the next few years on autopilot. I had promised my mother I would finish college so I continued with school, graduating from St. John’s University with a bachelor degree in 2007. I spent the next two years just coasting through life and was far from happy.
Just when I thought I would be able to pull myself out of this depression, my sister committed suicide in early 2010. She had been struggling with mental illness most of her life but I felt so guilty because I had promised my mother on her deathbed that I would take care of my sister. It was a promise I couldn’t keep.
Reconnecting with the SCI Community.
Lost and alone, I knew the time for denial was over. I had to look inward and really ask myself what I wanted and find a way to do more with my life.
Mount Sinai Rehab Center has always been a place where I knew I could go and connect with a SCI peer support group to talk with individuals who have similar disabilities. It was through this support group that I found out about NYCSCIA (NYC chapter of the United spinal Association) and decided to attend one of their meetings. Once I got connected with NYCSCIA, I discovered a network of people and organizations who helped give me the confidence and motivation I needed to accomplish what I have today.
Believing in myself.
Little by little, I made new friends, started volunteering and being more social. I went sky diving, became a peer mentor for new spinal cord injury patients, signed-up for the Axis Project, a health and fitness program for people with disabilities, to get back into shape and was asked to represent NYCSCIA at Roll on Capitol Hill, an annual advocacy initiative sponsored by United Spinal to lobby Congress for disability rights.
Roll on Capitol Hill was one of the most powerful and emotional things I have done in my life.
I was once a person who was completely isolated from the world, now I found myself in Washington, D.C. lobbying for the rights of hundreds of thousands of people with disabilities. I am so thankful to NYCSCIA for choosing me to represent the chapter because I honestly believe that this was the turning point where I started really believing in myself.
For me, the key to accepting my disability and moving forward was connecting to the NYCSCIA peer support network. Sharing and problem solving with others who are living with the challenge of spinal cord injury enabled me to begin to heal and rebuild my life.
Today I have a job, live independently in my own apartment and continue to push forward to live the life my mother wanted for me. Finally, after more than 20 years living with a spinal injury, I am a person with a disability who is comfortable in his own skin.
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