Many of us who have been paralyzed for decades have a certain skepticism – let’s call it an innate distrust – of doctors and hospitals. It’s common for us to share stories of doctors and nurses asking stupid questions or giving bad advice. Much of their behavior stems from an incomplete understanding of the many ways a spinal cord injury disrupts not only our bodies but our lives as well. After more than 50 years as a patient dealing with SCI, I now see that most doctors and nurses have guided their understanding of spinal cord injuries through a web of myopic ignorance that is solely due to the limited time they spend with us in a doctor’s office or hospital.
Very few medical professionals have a true understanding of how we move, work, play and live our everyday lives. They see us only in times of greatest weakness and need. The result is too often medical myopia, as if they only see what they already know and have experienced first-hand. And it’s not her fault. Medical schools do not comprehensively cover SCI. They are embroiled in a broader, even more pervasive, institutional bias that is playing out daily in our nation and the world. The real danger of medical myopia is that it is linked to a broader and more pervasive lack of respect for our quality of life. We are the cultural oddities whose needs are usually seen as an afterthought, if at all. The ultimate pernicious result of this attitude is the widespread, unspoken view that our lives are worth less than “normal” people, and for some – not necessarily medical professionals – that means we are expendable.
Sounds harsh, I know, but many of us have felt the very real pang of feeling belittled.
Those healthcare professionals who escape the web of prejudice typically have a close association with SCI themselves or know a close friend or relative with SCI, have extensive experience working in an SCI rehabilitation facility or in a private practice with a large number of SCI patients. These are the doctors, nurses and specialists who speak our language and who understand or at least try to understand our whole life. They know that our condition does not magically disappear with a timely office visit. We need more of them.
Take the area of wound care, for example.
Since writing a 7-part blog in 2018 chronicling my struggle with a complicated stage IV pressure ulcer and what resulted – severe confinement to bed, intravenous and oral antibiotics, complicated flap surgery, other surgeries, and finding a top-notch therapy bed with a suitable one Hospital Frame – I’ve been contacted by dozens of readers with similar wound issues who don’t seem to be receiving the care or equipment they need. You’re frustrated and scared, and rightly so.
Infected pressure sores are a leading cause of death for those of us with SCI. The main problem is the lack of specialist wound care physicians with hundreds of hours of experience treating SCI-related wounds. Just a few years ago, doctors could not even take the specialist examination for wound healing. Today there are some, but many are not recognized by independent accreditation. We have certified wound nurses who often know more than the doctors who write the prescriptions. A relatively small number of plastic surgeons have assumed responsibility for surgical reconstructive procedures, but their numbers are shrinking. There is more money to be made from cosmetic surgeries and as such there are few plastic surgeons today who are interested in surgical wound care.
Another area of concern is finding a “wound therapy bed” that actually works and is covered by Medicare and private insurance carriers. Prices range from pharmaceutical-grade beds, which cost a few hundred dollars, to medical-grade beds, which can cost upwards of $30,000. So now we have three main problem areas, all converging to create a flawed system – too many physicians who know too little about the complexities of SCI-related wound care, too many inferior “wound care beds” touted as our first choice, and a lack of insurance coverage for the few pricier beds that actually help heal and prevent pressure sores.
How do we fix the whole system? It starts – as usual – with raising awareness of our wound care and day-to-day needs among legislators and medical professionals who can make a difference, and advocating for rigorous, board-certified wound care programs for physicians (beginning with medical school) and onwards insist that CMS (Centers for Medicare and Medicaid Services) cover the cost of needed therapeutic equipment such as medical beds. Such a campaign would save lives and improve the quality of life for millions of people worldwide.
Tim Gilmer graduated from UCLA in the late 1960s, added an MA from Southern Oregon University in 1977, taught writing classes in Portland for 12 years, and then began a writing career. After becoming an Oregon Literary Fellow, he joined New Mobility magazine in 2000 and edited the magazine for 18 years. He has published over 100 articles, 200 columns, occasional film reviews and essays. He and Sam, his wife and companion for 47 years, also own and operate an organic farm south of Portland where they live with their daughter and son-in-law, four grandchildren and a resident barn owl. An excerpt of a treatise on his early post-SCI years, as part of a compendium of his writing over the past 30 years, can be read on his website — Everything you need —