Rx for Medical Myopia

Posted by Tim Gilmer in Life After Paralysis on March 10, 2022 # Health

Many of us who have been paralyzed for decades have a kind of skepticism — call it inherent distrust — of doctors and hospitals. It is common for us to swap stories of doctors and nurses who ask dumb questions or give bad advice. Much of their behavior comes from an incomplete understanding of the many ways a spinal cord injury disrupts not only our bodies, but our lives. After more than 50 years as a patient dealing with medical situations related to SCI, I now see most doctors and nurses as having had their understanding of spinal cord injury funneled through a web of short-sighted ignorance derived solely from the limited time they spend with us in a doctor’s office or hospital setting.

Very few medical professionals have any real understanding of how we move about, work, play and live our everyday lives. They see us only in our 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 firsthand. And it is not their fault. Medical schools do not cover SCI comprehensively. They are caught up in a wider, even more pervasive, institutional bias that plays out daily in our nation and the world. The real danger of medical myopia is that it is related to a broader and more pervasive lack of respect for our quality of life. We are the cultural oddities whose needs are usually considered as an afterthought, if it all. The ultimate harmful outcome of this attitude is the widespread, unspoken view that our lives are of less value than “normal” people, and to some — not necessarily medical professionals — that means we are dispensable.

Sounds harsh, I know, but many among us have felt the very real sting of feeling discounted.

Those healthcare professionals who escape the web of bias usually have a close connection with SCI themselves or know a close friend or relative with SCI, have significant experience working in an SCI rehab facility, or in a practice with large numbers of SCI patients. These are the doctors, nurses, and specialists who speak our language and understand, or at least try to understand, our whole lives. They know our condition does not magically disappear with a timely office visit. We need more of them.

Take the field of wound care, for instance.

Ever since I wrote a 7-part blog in 2018 that chronicled my battle with a stage IV complicated pressure sore and what it led to — strict bed confinement, IV and oral antibiotics, complicated flap surgery, other surgeries, and finding a first-rate therapy bed with appropriate hospital frame — I have been contacted by dozens of readers with similar wound problems who can’t seem to get the care or equipment they need. They are frustrated and frightened, and rightly so.

Infected pressure sores are a major cause of death for those of us with SCI. The main problem is the lack of board-certified wound care doctors with hundreds of hours of experience treating SCI-related wounds. Just a few years ago, doctors could not even be board certified in wound care medicine. Today there are some, but many are not recognized by independent accreditation. We have certified wound care nurses who quite often know more than the doctors who write the orders. A relatively small number of plastic surgeons have taken on the responsibility for surgical reconstructive procedures, but their numbers are shrinking. There is more money to be made in cosmetic surgeries, and as a result, today, there are few plastic surgeons attracted to surgical wound care repair.

Another problematic area is finding a “wound therapy bed” that actually works and is covered by Medicare and private insurance carriers. Prices run anywhere from pharmaceutical grade beds that cost a few hundred dollars to medical-grade beds that can cost upwards of $30,000. So now we have three main problem areas all converging to create one deficient system — too many doctors who know too little about the complexities of SCI-related wound care, too many inferior “wound care” beds that are promoted as our first choice, and a lack of insurance coverage for the small number of more expensive beds that really do help heal and prevent pressure sores.

How do we fix the whole system? It begins with — as usual — raising the level of awareness of our wound care and day-to-day needs among legislators and medical professionals who can make things happen, advocating for stringent board-certification wound care programs for doctors (beginning in medical school), and insisting that CMS (Centers for Medicare and Medicaid Services) covers the cost of needed therapeutic equipment such as medical-grade beds. Such a campaign would save lives and improve the quality of life of millions worldwide.

Tim Gilmer graduated from UCLA in the late-1960’s, added an M.A. from the Southern Oregon University in 1977, taught writing classes in Portland for 12 years, then embarked on a writing career. After becoming an Oregon Literary Fellow, he went on to join New Mobility magazine in 2000 and edited the magazine for 18 years. He has published upwards of 100 articles, 200 columns, occasional movie reviews and essays. He and Sam, his wife and companion of 47 years, also own and operate an organic farm south of Portland, where they live with their daughter and son-in-law, four grandsons, and a resident barn owl. An excerpt from a memoir about his early post-SCI years, as part of a compendium of his writing over the past 30 years, can be read at his website — All You Need

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.