Over the course of his tenure at NEW MOBILITY, Tim received an on-the-job education in SCI research and medical issues. Publisher Jean Dobbs, who hired Tim, recalls how he had little interest in “cure” at the time. “He wasn’t up to speed on hot topics like stem cell research when he started,” she says. “But he put in the time to really grasp the science, and now he’s our resident expert on everything to do with restoration of function.”
In some ways, the fact that his knowledge was tied to his personal experience was a good thing. He started in the same place as many of NM’s readers, and unfortunately, more than a few of the doctors and therapists who treat them. After all, finding specific, sound medical advice on how to manage the secondary complications of living with a spinal cord injury is like searching for an accessible cab in New York City.
Armed with the connections and resources of NM, he compiled the best available knowledge on a host of medical subjects — pain, infections, bladder management, pressure sores, functional recovery, sleep-issues and depression, just to name a few — and made it available to readers in clear, easily-understandable language.
Tim’s natural skepticism, when combined with his methodology — giving equal space to the medical professionals who advance disability care and actual wheelchair users’ real-life medical strategies — helps readers to see past the typical medical model, where the doctor’s word is beyond reproach. In Tim’s world, doctors are only worth listening to if they truly know what they are talking about.
A 2005 article, “Bladder Matters,” opens with a scene that is a microcosm of Tim’s approach:
Once upon a time, in a hospital far far away, a urologist appeared to me all dressed in white. “How would you like me to give you an injectable,” he said, “that will prevent urinary tract infections for the rest of your life?” At the time I had been stuffed away in isolation for three weeks and was gradually descending into paranoia. The magical gift bearer had on a sterile mask and gown and wore the relaxed look and condescending attitude of a doctor who thought too highly of himself. All I wanted to do was go home.
“’No,” I said, and that was that.
Why did I refuse? Because it was 30 years ago, I’d never heard of a UTI vaccine and I trusted nobody — especially not wise men in white gowns.
Tim understands an essential truth of magazine writing: To inform readers, often you first need to tell a story people can relate to. And Tim is unafraid to use his own experiences, trials and complications — and he has plenty — as the hook to pull readers along, while keeping the medical information as practical and easily understandable as possible. Exactly the opposite of doctor-ese.
Breaking down the wall of medical knowledge and jargon while constantly advocating for better care is one of Tim’s contributions to rectifying a medical system that so often fails people with disabilities. Most of us who live with SCI/D know the helpless feeling of realizing our doctor doesn’t know the first thing about our disability, but nevertheless is going to be making decisions that directly affect our health and well-being. Tim’s medical writing disseminates the most up-to-date medical knowledge and best-practices from the people who do understand disability so readers are armed with enough knowledge to direct their own care. Whether detailing the specifics of bladder augmentation or excoriating the medical establishment for systematic inaccessibility, advocating for better care is at the heart of everything he writes.
“He created something that wasn’t there and was incredibly valuable to people,” says Dobbs. It’s not an overstatement to say that the medical writing in NEW MOBILITY during Tim’s stint as editor has saved lives. It’s hard to ask for more than that.
Below is some of Tim’s most impactful medical writing that remains relevant to current readers.
Rob Summers: From Quad to Para and Beyond?
This profile of Rob Summers, the first participant in the groundbreaking epidural stimulation trial designed by renowned researcher Reggie Edgerton, Ph.D., and conducted at the University of Louisville, details the science behind epidural stimulation and activity-based therapy. It chronicles what was extremely invigorating news for the SCI community, an excitement Tim shared in. But Tim takes us beyond the “Paralyzed Man Stands!” headlines, giving space for researchers to explain the fledgling science as best as they could, showing the amount of work Summers put in before and after getting the stimulator implanted and how individualized the whole concept of “recovery” is.
The Big Idea: Does Recovery Trump Cure in Spinal Cord Injury?
Following the success of the epidural stimulation trial that Rob Summers was involved in, the Christopher Reeve Foundation announced The Big Idea, essentially an expanded, 36-person epi-stim trial to further test the procedure’s ability to produce functional recovery. This piece takes a broad view as Tim talks with Sam Maddox, the founder of NEW MOBILITY, to place The Big Idea within the context of SCI “cure” stories that have been popping up since the ’60s without ever producing practical results. With epi-stim, the name of the game isn’t “cure,” but improving quality of life by recovering functional ability. That’s something that has already been demonstrated. Now, the disability community is waiting to see how far they can push the concept of recovery and when the procedure could become widely available.
When Rehab Becomes Recovery
This article is a look into the evolution of epi-stim trials, including the case of Mark Pollock, a blind SCI survivor who underwent the trials while using a robotic exoskeleton. Tim talks with Reggie Edgerton, the man behind most of this research, about how his team targets epi-stim to improve specific functional improvements, including arm, hand and lower-limb movement.
Overcoming Recurring Depression
Here, Tim recounts his own battle with depression and the long journey to escape its hold. The story is at once intensely personal and outward looking. He shares the things that helped him the most — music; physical, outdoor activity; connecting to something greater than himself; and rediscovering purpose — as a way of lighting a path for those caught in a similar situation. With estimates of depression affecting anywhere from 11 percent to 37 percent of the SCI population, it’s important for those in its throes to know that they’re not alone.
Equal Healthcare: If Not Now, When?
“Why is it taking so long for the health care industry to begin to comply with the Americans with Disabilities Act?” It’s a simple question, but one that takes a few thousand words to even begin to get a handle on. Tim looks at the appalling lack of accessibility within the medical establishment, much of which can be traced back to the medical model of disability, which he describes as “the long-held bias that a person with a disability is not as valuable to society as a nondisabled person,” how it affects wheelchair users across the country and the various types of pressure being used to try and slowly bring about more widespread compliance.
Return of the Canary
In this piece, Tim recounts his experience with coronary artery disease, the lifestyle decisions that led to it, the multiple bypass surgery that followed, and the changes he’s made to ensure he doesn’t just clog his new pipes back up. Like the rest of his medical writing, it’s filled with practical information, so anyone dealing with similar issues comes away with a broad understanding of the disease and how it affects wheelchair users.
Sleep, Pain and Peace of Mind
Sleep is an often-neglected process, both in our lives and in medical writing. But the more science studies it, the more we learn how vitally important quality sleep is to our health. This piece digs into sleep issues as they relate to people with disabilities, with everything from expert mattress and positioning recommendations to pain management, bedtime strategies for those with trouble falling asleep and a host of tips from wheelchair users.
The Pain That Never Stops
This article is a look into the maddening world of neuropathic pain, a condition prevalent within the SCI community that is not subject to easy fixes. Tim relays his personal experience with pain and talks with a number of wheelchair users about how it affects them and what they do to manage it. While the medication strategies vary from Neurontin to cannabis and everything in between, almost all agree that staying both mentally and physically active is the key to not being swamped by pain.
Journey to the Far Side of Tomorrow
Tim’s first foray into blog writing, in which he recounts his lead up to and the aftermath of a flap surgery to heal a stage IV ischial pressure sore, struck a chord with readers, many of whom have been on similar journeys. Tim tells a multi-part story in serial form, intertwining personal experience with medical facts, analysis of insurance margins, profit-driven healthcare and the need for change, concluding his journey with a story of “complete healing.”