In spinal cord injury care, the system is built around fragments.
Appointments for bladder infections. Appointments for pressure sores. Appointments for toothaches. Each issue gets its own lane. But most of us don’t live in fragments and neither do our injuries.
Narrative medicine is built on that reality. The idea is simple: A patient’s story isn’t separate from the condition. It’s not background or extra detail. It’s part of it — something clinically relevant. For those of us living with a spinal cord injury or disease (SCI/D), where everything is downstream of everything else, that distinction can change what treatment is actually able to do.
I didn’t fully appreciate that until I went into physical therapy for a separated shoulder.
I expected the usual range of motion, resistance bands, measurable progress and pain scales. Instead, my therapist started by asking how I thought I injured it.
I told him I wasn’t sure. It might be mileage, such as pushing my wheelchair more than a mile every Tuesday to visit my dad. It might be the sketchy transfers in hotel rooms. It might simply be too many years in a wheelchair. He asked how it affected my activities of daily living — getting dressed, driving and playing with my kids. Then, the questions widened — my military service, how I became paralyzed, the sports I used to play and the life I was still trying to build.
When he asked about sports, I told him about swimming, triathlons and eventually pushing a wheelchair from Los Angeles to New York City. Thirty-five years as a quadriplegic is hard on the shoulders, even without all that extracurricular stuff. He also asked me about family — my dad’s rapid decline, the strain of staying present for my young daughters while helping coordinate his care.
At some point I asked, half joking, if I was in physical therapy or some kind of psychological counseling.
That’s when he named what he was doing.
Once he explained narrative medicine, I started sharing things I’d never thought to bring up in a clinical setting, things that seemed too small, too strange or too far from the point.
I told him my chronic pain is bad enough at night that I grind my teeth in my sleep, which is something I didn’t connect to chronic pain until my dentist told me so. I told him that when the pain spikes, I sleep with my right shoulder hiked up toward my ear, right fist clenched and tucked under my left armpit. It sounds strange. But it’s what my body does when it’s trying to manage something it can’t turn off.
I told him about my work — long hours at the computer as editor-in-chief of two publications, left hand on the keyboard, right hand on the mouse. It’s not a neutral position. After enough hours, my right shoulder — the same one we were trying to fix — aches.
That changed how we approached treatment. My shoulder was spending hours every night in a compressed, stressed position driven by pain, and we were trying to rehabilitate a joint my own nervous system was working against while I slept. Layer on 35 years of propulsion, athletic repetition and daily transfers, and the picture got clearer. Those Tuesday trips to see my dad weren’t optional. But they added to a system my body was already adapting to — not in a moral sense, but in a mechanical one.
It stopped being about isolating the joint and started being about preserving function inside a full life. The goal wasn’t only better shoulder mechanics; it was making sure I could keep doing what I needed to do without losing more ground elsewhere.
This is where narrative medicine does something the fragmented system can’t.
The most important context often surfaces when someone simply has time to answer a question without being cut off. Not a long intake interview, just enough space for the real picture to show itself. The grinding teeth. The clenched fist tucked under the armpit at 2 a.m. The thing you never mentioned because it seemed too weird or too unrelated to the separated shoulder you came to address.
It usually isn’t.
I’ve seen this within the Department of Veterans Affairs, where I receive care. Programs like My Life, My Story create space in medical records for patients to tell their history in their own words. But even outside formal programs, what mattered most in my case was simpler: A clinician was willing to listen long enough for context to matter.
Then, the context changed again. My dad died.
When I told my physical therapist, it didn’t restart the work — it became part of it. The urgency tied to those Tuesday visits was gone. We shifted focus from protecting short-term function to rebuilding long-term strength. And we said out loud something that usually gets skipped: Grief shows up in the body. In sleep, tone, energy, pain and how movement feels from one day to the next.
Care only stays accurate if it can change when life changes.
After that, I stopped holding back in sessions. What used to feel like too much information became part of the work. My physical therapist could shape treatment around what my life actually required at each stage — first staying functional enough to show up for my dad, then rebuilding after he was gone.
And underneath that was something harder to measure: the experience of being treated like a whole person living a real, changing life. Not just a shoulder to fix.
For people living with SCI/D, that difference isn’t abstract. It shapes what care can actually do.
Narrative medicine doesn’t replace evidence-based treatment. It makes it usable in real life — where nothing is separate and nothing stays the same for long.
I went in for a separated shoulder. What I found was care that finally matched the reality of living in this body: everything connected, everything in motion and recovery that only works if it moves with your life instead of against it.
As always, please share your thoughts with me at al@pvamag.com.
