My name is Sharon Malone. I am a T/5 T/12 incomplete paraplegic since 2012. I live in Mesa, Arizona and I am a mother of three children ages, seven, nine and twelve. Currently I am the designated Ambassador (Arizona) with the Peer & Family Support Program (PFSP); In addition to mentoring with the PFSP, I am a dedicated volunteer with a number of organizations that serve the paralysis community in my area. I also spend time speaking about living with paralysis to various groups. I view my volunteer work, public speaking and the impact of my work on others as a reflection on how helping people living with spinal cord injuries can make a difference in other’s lives.
I volunteer my time with the Arizona Spinal Cord Association [a PFSP partner], a non-profit organization that enhances the lives of individuals with spinal cord injury. I am also a designated mentor for Ability360 & St. Joseph’s hospital. I partner with the physical therapy/occupational therapy schools around the Arizona valley to teach students the necessary real-life experiences and challenges that wheelchair users have to face on a day-to-day basis. This is a perfect opportunity to educate those that come in contact with patients first. I support the Next Step Peer Mentoring Foundation by participating in the activities that they provide and speaking to the individuals that attend those events about a range of daily living topics. I also support the Project Walk Foundation – Phoenix Chapter, an organization that raises awareness about spinal cord injury as well as improves the quality of life of those individuals.
At the local medical schools, a group of us who have survived spinal cord injuries speak to the students about the real world challenges we face that can’t be taught from a textbook. These students haven’t lost their muscles as we have so they can’t simulate the struggles we face. The topics can range from the level of injuries that we sustained and our functioning, daily living activities, bowel and bladder, secondary conditions, wheelchair skills, driving, outdoor activities and hobbies, and even the sensitive topics of dating and sex. The teachers and students are super grateful for us coming to speak to them as it teaches them compassion and helps them to understand how difficult real-life challenges can be for someone living with paralysis.
When I speak one-on-one with spinal cord injury survivors, our discussions mainly focus on daily living skills that we all, to some extent have in common, such as therapies, medications and equipment we’ve found helpful. While there is no one solution for everyone, providing resources plays a key role in success stories. The biggest challenge that spinal cord injury survivors struggle with is the sense of loss of independence that we once had. I don’t think anyone wants to have to rely on other people for everything, so if I can give someone even one victory of doing something on their own by strategizing what works best for them, then I am beyond happy.
I am passionate about getting involved in the community to let others know that they are not alone in their journey, and if I can pass on my experiences that have been challenging, then others have the potential of making things easier for themselves, It is a pay it forward approach. For me, volunteering has been so rewarding and I feel like I have a sense of purpose for what has happened to me. If I can make someone smile versus the all too common depression, then I light up internally. This whole spinal cord injury experience has made me appreciate the things I do have and adopt a “stop to smell the roses” philosophy. By joining and working with the spinal cord injury community, I don’t feel like I am limited in the things I want to enjoy. I may have to do it in a different way but I’m not limited by the possibilities of a successful and fulfilling life. Don’t give up, focus on what you can do and enjoy life as tomorrow is never guaranteed.
These are challenging times and it is up to us to make sure no one is left behind.