SCI Awareness Month

Every September is Spinal Cord Injury Awareness Month. Many organizations and individuals are helping others understand SCI (Spinal Cord Injury). National Spinal Cord Injury Awareness Month was established in September 2014 with the passing of U.S. Senate Resolution 533. Although its important to educate people all year round, every September, organizations and individuals spread awareness and promote outreach to those who have a SCI.

Did you know that there are 17,000 new cases of spinal cord injuries each year and each injury is different and unique and how it affects a person’s mobility? There are 48 new injuries every day and many of these people are injured in auto accidents, falls, violence, diving accidents, or sports-related accidents.

For instance, I am a T-4 T-5 & T-12 paraplegia injury or para as often called. That means that my thoracic spine was injured, which is midway up the spine to my mid lower back. The thoracic spine is the longest region of the spine, and it is also the most complex because it has many different functions for the body. It is connected to the cervical spine and the lumbar spine. This part of the spinal cord runs from the base of the neck down to the abdomen and this part of the spinal cord is the only spinal region attached to the rib cage.

It is quite amazing which parts of the spinal cord are responsible for movement and other features of the body. The spinal cord is about 18 inches long, beginning at the base of the brain and extending down the middle of your back to the lower part of your back. Each location of injury is unique and manages the person’s function in different ways, depending on the injury to the spinal cord. The spinal cord does not have to be severed or cut for the loss of function. It can be bruised or slightly injured to cause damage because it is a very delicate system.

For example, I am an incomplete injury and that means I have sensation and can move one small toe. Also, I experience involuntary leg or muscle movement. What is interesting is that for most of the people who sustain a spinal cord injury, their cord is still intact. This really means the spinal cord had some damage, which caused loss of function in some way.

Most people think, “Oh you broke your back if you have a spinal cord injury,” but that is not the case. A spinal cord injury is very different from a back injury. So to fully understand the spinal cord functions, think of it as similar to a complicated wiring system from your brain that manages all the feeling and movement of your body parts. The spinal cord encompasses many bundles of nerves, which are wired to carry nerve messages to and from your brain and relay them to the rest of your body. There are two types of transmitting systems one is the motor system and the other is the sensory nerve system. Motor is for muscles and movement and sensory for touch and sensation

National statistics report that 12,500 people survive spinal cord injuries each year.
Of those injuries it is reported that most SCI injuries are caused by car accidents, followed by falls, acts of violence, sports injuries and other recreational activities. The awareness programs throughout September are to bring awareness to these types of injuries and hopefully help prevent future accidents. The month is designed to also bring awareness to the many people who live in their community and to make a difference for others with SCI.

Advocating for SCI though many organizations is a key factor into bringing awareness to SCI and the resource or advancements in technology. There are many different organizations that provide useful resources to increase awareness for SCI through their community outreach. Organizations such as United Spinal Association, Unite to Fight Paralysis, Christopher & Dana Reeve Foundation, Miami Project and many more. There are also cross disability organizations whose members are SCI and they work on awareness and can be found across social media.

Obtaining a SCI is not only traumatic for someone, the cost of maintaining a healthy life can be expensive. According to the Dana and Christopher Reeve Foundation, average expenses for the first year for people with SCI is approximately $518,000 to a million dollars for care, depending on the level of injury. The cost of living with a SCI can range from 2.1 to 6.4 million dollars over their lifetime.

People with spinal cord injuries are already aware of the difficulties that come with this type of injury. With the advancement in technology for their mobility and information for treatment, people with SCI really can improve their lives.

After I was injured in 1981, I knew my happiness and health depended on how I choose to live with SCI. I decided that my SCI was a really just a different mode of transportation. I felt that I was the same person, I just didn’t walk anymore. I am so lucky to have had the opportunity to live my life on my terms and raise my kids even with a disability.

To my kids my SCI made no difference to them. To them I am no different that any other mom, with the exception that my oldest son, Tyler, wanted to bring me and my wheelchair to show-n-tell when he was in kindergarten. He figured no other kids had a mom in a wheelchair and the kids would want to see what I did. The teacher agreed and what great questions I got from a bunch of five-year-old kids! They asked why and how I am in a wheelchair. To them, I was cool, because I let Tyler climb on the counter to get things out of the cupboards and he would not get in trouble. Sometimes there are perks to your mom being in a wheelchair.

It has been a long 38-year-old journey for my SCI and me and my biggest accomplishment has been raising my four kids, all of whom are adults. They were born on my lap and together we are a family just like anyone else. Today people with SCI are so fortunate with the advances in technology for wheelchairs or power wheelchairs that assist them in their life journey. I remember there were only two types of wheelchairs that were manual when I was injured in 1981. Today there are hundreds of companies advancing technology and medical care to provide mobility to people who have SCI. We should celebrate SCI Awareness Month and all the people who continue to help their friends or family, those who advance technology those who support organizations and the medical advancements. It is a life worth living.

About Madonna Long: Madonna works as a disability advocate to educate policymakers and congressional leaders on disability issues. She is a mother to four children and lives life on her terms, despite a spinal cord injury. Click here to learn more about Madonna.