Mark X. Odum has led the NARIC team for more than 30 years. He calls himself a “60/40 SCI guy” – someone who, now is his 6th decade, has lived more than 40 years with a spinal cord injury. In this essay, Mark shares his thoughts on why SCI awareness is so important in 2020 and beyond.
Since 2014, September is commemorated as spinal cord injury (SCI) awareness month. At that time, the US Senate unanimously passed a resolution to generate awareness and garner support for cure research to reduce, prevent, and reverse paralysis. Through the years SCI awareness month has expanded its focus from cure to community participation, with programs emphasizing advocacy, education, and care and research activities to find better treatments, therapies, and technologies to support full participation of people with SCI in school, work, and community life. This year is no different, although the coronavirus pandemic has motivated some organizations to focus on health, safety, and social connectedness.
SCI does not discriminate: Young or old; rich or poor; black, brown, or white, anyone can acquire it. According to the NIDILRR-funded National SCI Statistical Center (NSCISC) that, under a number of different auspices, has been tracking these data for 50 years (that’s for a different story later), someone in this country is paralyzed from a spinal cord injury every 48 minutes. Currently, about 273,000 people in the US have SCI and there are millions more worldwide. SCI is a catastrophic human event and a massive financial problem. An injury can affect nearly all bodily functions; most people think immediately of walking and mobility but people with SCI can also face endocrine, metabolic, and nutritional diseases; falls and unintentional injuries; respiratory diseases; nervous system diseases; musculoskeletal disorders; and mental disorders. SCI is expensive. For high level injuries NSCISC estimated that the first year after injury health care costs and living expenses often exceeds $1 million. Costs for post injury years can easily exceed $110,000 a year. This does not include loss of wages, fringe benefits, and productive employment or being under employed.
Educating the general public to these obstacles will continue to be a challenge. There are a vast range of organizations that exist around the world to promote and raise SCI awareness, and each SCI organization, association, and support group at the national, state, and local levels works hard to cultivate their unique emphasis. Designating September as an official “awareness month” acts as a catalyst to illuminate the overall impact caused by spinal cord injuries. It has evolved into a worldwide event to advocate for and promote a greater quality of life and independence for all people living with spinal cord injuries and disorders. Some of the more popular global observances include the Spinal Cord Injuries Australia that designated the first week of September as SCI awareness week with the theme “Accessibility Equals Opportunity.” In Great Britain the Spinal Injury Association observes “For Life After Spinal Cord Injury”. The World Federation of Chiropractic has organized World Spine Day with the theme “Back on Track!”
2020 is a different year, however. As I mentioned, COVID-19 is an area of serious concern for the SCI community, from researchers to consumers. In the past, many of the SCI awareness efforts focused on supporting and funding special projects help overcome the medical challenges of paralysis. But in 2020, there has been a shift in funding priorities to focus on creating and publishing resources needed to deal with the coronavirus pandemic while living with SCI. Everyone needs to be fully aware of how deadly the coronavirus threat is, and the distinct impact that COVID-19 has on persons with SCI.
Earlier this month one of the largest global organizations, the International Spinal Cord Society’s (ISCoS) declared every September 5th as an official SCI day. ISCoS promotes the highest standard of care in the practice of SCI and includes 21 participating international health-related societies and individual members from more than 87 countries. They joined the quickly growing trend and named this year’s theme, “COVID-19 and SCI: Staying Well.”
There are good reasons for this focus. The coronavirus is a new threat and demands previously unidentified resources to help keep the SCI population safe. Nearly everyone is having a difficult time dealing with COVID-19 and persons with spinal cord injury must be overly diligent and fully respect how contagious the disease is to them, follow the prevention advice, and minimize the risk. People with SCI may be at higher risk for both contracting COVID-19 and for some of the gloomier outcomes due to underlying conditions such as metabolic and respiratory diseases. Physical changes inherent to SCI can make it difficult to accurately diagnose and successfully treat COVID-19, but they may also greatly increase the chances of dying from coronavirus. Respiratory illnesses, even before the onset of COVID-19, are one of the leading causes of death in this community, especially for people with high level injuries. Awareness of these unique and critical SCI characteristics are needed now more than ever. Family members, friends, even caretakers need to be aware of these dangers and be ready to take action. At the first sign of individuals with SCI developing symptoms, the prompt involvement of an SCI-trained physician, whether in-person or virtual, is warranted during the COVID-19 pandemic.
Through education, awareness, and prevention we can save lives. In addition to relentlessly following the basic hygiene advice (wearing masks, physical distancing, washing hands and face, and staying in well-ventilated areas), there are very particular circumstances of which people with SCI must not only be aware, but must also be highly vigilant. They need to diligently monitor caretakers, drivers, and other people who provide assistance or support, particularly those who may visit more than one client. It is important to keep in mind that anyone entering your personal space could be an infection risk. Then there is the potential for a greater exposure to surfaces for both manual and power wheelchair users – remember to clean the things that your hands touch, including your wheelchair (rims, wheel locks, armrests, and joysticks) and other assistive devices that contact your hands or face. While we may all crave a return to social gatherings, people in the SCI community should avoid indoor work and social activities and large crowds as much as possible.
Interestingly, the pandemic may have some benefits for people with SCI and other disabilities: Telework is now almost ubiquitous, where once people with disabilities had to fight for remote work as a reasonable accommodation. Telehealth/telemedicine is another welcome innovation. Delivery services for groceries and medical supplies as well as prepared foods has helped limit potential exposures. Families and friends are gathering in online forums to stay connected, too. These innovations have been on the SCI community’s “wish list” for decades and now they are a benefit to society as a whole to stay active, employed, and engaged.
This has been a challenging year for so many of us, and more challenges lie ahead. By staying aware – of our health, our relationships, our technology, and our community – we can stay productive, engaged, and connected through 2020 and beyond.