Four-plus months of strange revelations and unthinkable circumstances passed during that difficult time of early paralysis, as in a bad dream. I remember that first day of my rehab stays clearly today, 57 years later. After a long ambulance journey from a small community hospital to a distant city hospital, I was placed in a large hospital ward with only the whirring of air conditioning and occasional muted voices somewhere outside the door. Then came a terrifying scream and unintelligible moaning. Somewhere on the other side of my door, it seemed that a man was either dying, trapped in a nightmarish hell, or being tortured. All I knew was I did not want to become that screaming man.
When I was discharged from the hospital and returned to the home where I had grown up, it was like visiting a distant planet that I no longer recognized. Now, moving along in a wheelchair, the rooms in my house were strangely unfriendly. Steps and too-small bathrooms robbed me of my freedom of movement. My hometown no longer felt like home. Gradually I began to see what nondisabled people could not understand — that paralysis from spinal cord injury involves so much more than simply no longer walking. In time I learned that SCI also affects your bladder, bowels, genitals, ability to move or feel sensation, your kidneys, intestines, stomach, esophagus, metabolism, muscle mass, joints and tendons, bone mass, heart and lungs.
Not only does your body change in a way that is utterly foreign and uncontrollable, but the environment you inhabit and the people you encounter also seem to change. Nothing, literally nothing, is the same the moment your spinal cord is damaged.
But most people are not interested in these things. Most people see us as “broken” — as if all we need is to somehow get on our feet and walk. Then we would be “cured.” As well-meaning as these people are, it is beyond their ability to understand my everyday reality. And so, it is up to me — up to all of us — to find our way and discover who our family really is, for they are the ones who truly understand our situation.
At the age of 32, after having been paralyzed for the previous 12 years, I finally recognized and accepted my family. More than 100 of them were on the nightly news for weeks, being themselves, doing what they had been doing every day, but now they were spending each day and night on the 4th floor of the Health, Education and Welfare building in San Francisco, and the whole nation was watching. At that moment — April 5, 1977 — even though I was not present in the HEW building with them, I felt for the first time a sense of belonging. They were putting their lives at risk week after week, not only for themselves but for others like them, and they would not give up. What sacrifice and determination! All my misplaced pride fell away. My choosing earlier not to belong now felt shameful. I opened my heart and accepted my new family gratefully.
Since then, thanks to what my family did on that day — insisting on our rights as participating citizens in a free society — my life has changed for the better in so many ways. Being part of a family that shares its difficulties and successes and supports one another has transformed my brokenness into wholeness. When I lost what I thought I had been, I gained what I might become.
Read about the brave sacrifice of your disabled family here.
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 —
Photo Credit: HolLynn D'Lil