Families suddenly faced with a new spinal cord injury often feel alone. It seems that no one understands their new situation in a way that helps them deal with the uncertainty that lies ahead. That’s why the Hill Foundation of Chicago created the new website, FacingDisability.com, to connectfamilies facing spinal cord injuries with other who have been there before them. FacingDisability has more than 1,000 videos drawn from interviews with over 100 people with spinal cord injuries, and their mothers, fathers, siblings, children and caregivers. They were asked the same 48 questions on topics such as “First Days after SCI” and “SCI Rehabilitation,” and about their relationships and plans for the future. It is the only place on the internet where you can see and hear a range of real-life experiences.
For example, Mary Ellen, whose daughter became quadriplegic in 2005, said connecting with other SCI families kept her going. “Looking back, I think the things that were the most helpful were touching base with other families and parents who had had a child that was injured. And a child that was reasonably, recently injured, within the last four-five-six years. It was helpful talking to those people because they had been through the hard part that we were going through and they had come out at the other end, so you knew it was possible…they were really optimistic, they were encouraging, and it let us know that eventually, even though we didn't feel okay now, that eventually, things were going to be okay.”
Darren, who became quadriplegic at age 20, said he’d learned to: “Listen to yourself, and do things at your own pace, on your own terms. Because everyone’s going to have lots of great advice for you, but in the end, you have to live your life, you have to be comfortable with things at your own pace. And so, kind of do things when you’re ready, and listen to your heart…you have to learn that you’re limited by a pretty clumsy body now, especially if you’re a higher- level injured person. And I think just learning how to patiently exist inside this body takes a lot of time.”
It can be helpful to see and hear people like you, so FacingDisability videos are arranged by relation to injury as well in by question. You can watch individuals with SCI, parents, spouses, siblings and children, and filter your search by level of injury (paraplegic or quadriplegic), gender of person injured and age at injury. Follow this link to see all of FacingDisability’squestions and answers on living with paralysis.
FacingDisability also interviewed top spinal cord injury experts on their fields of expertise. The “Expert” section has over 200 videos covering topics on what most people need to know right away, such as “Spinal Cord Injury 101,” “Transition from Hospital to Home,” “Sex and Fertility after SCI” and “Adjusting to Social Life in a Wheelchair.”
One of the best ways to deal with a new injury is connecting with someone who has “been there.” FacingDisability has a “Peer Counseling” service, for people who want to connect one-to-one through an email system. To ask for general help, or to share your experience, there is also a “Forum” section.
Finally, FacingDisability.com has a “Resources” section made up of over 300 of the best spinal cord injury resources on the net.
FacingDisability.com was established by the Hill Foundation of Chicago. Their mission is to provide Internet-based information and support for people with spinal cord injuries and the members of their families. Connecting with the life experiences of others who have been there before often helps people find the strength and support to face their new lives ahead. For more information, contact FacingDisability at info@FacingDisability.com.
Thank you to Anne at FacingDisability for contributing as a guest blogger!
No comments:
Post a Comment