The Perseverance Payoff

Spinal cord injury, according to a friend of mine who had a dark sense of humor, is the gift that keeps on giving. He also was fond of saying, if it’s not one thing, it’s another.never give up

If you’ve been living with SCI for a decade or more, you are probably nodding your head right now. But what if you are well past the 50-year mark, closing in on 60 years with paralysis, each day still a struggle, and you have no answers for a number of complications that keep cropping up? The answer is simple: You persevere. You have no choice. It’s always better than the alternative. In the midst of learning continuous hard lessons that seem to spring from a bottomless well, the one gift you may be able to depend on in the end is the well-known biblical maxim — perseverance produces character, and character, hope.

My latest complication is one I have been dealing with for a very long time — chronic neuropathic pain. Just when I think I have found a way to get some relief, it starts up again, and I start a new search for some way to dampen, dull, or deal with it. Just recently I asked my primary care physician — who like most health care professionals has no idea what to do about NP — to refer me to a private clinic that specializes in treating pain. He did, but I can’t get the clinic to respond and even set an appointment. This is the second time this clinic has failed to respond. Perhaps my PCP made a mistake in the referral by including the words … “for chronic central neuropathic pain from spinal cord injury.” Even pain specialists balk at treating this type of pain that is notoriously difficult to treat with any degree of real success.

So, like always, I persevered. I asked for a second referral, this time to a “comprehensive pain treatment center” at what is thought to be the best medical facility in my state. But rather than depend on my PCP to describe my condition, I took the initiative and wrote my best email to the director of the clinic, asking for help, not really expecting a reply. To my surprise, she replied in two days: “Dear Mr. Gilmer: Spinal cord injury pain is one of the most intense and hard to treat. I am happy to see you and see what I can do. We have a surgeon here, Dr. R, that does some pain procedures. I think talking to him may be helpful too. Can you ask your PCP to send a referral to the Comprehensive Pain Center for me? Dr. R is in the neurosurgery department. Take Care …”

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The director’s reply gave me hope. Just hearing her speak the truth, “spinal cord injury pain is one of the most intense and hard to treat” — followed by “I am happy see you and see what I can do” — filled me with gratitude. Her positive approach to a problem she acknowledged as being difficult made me feel I had contacted the right person.

So I looked up “Dr. R” and read about him. He is in the forefront of research on treating neuropathic pain with spinal cord stimulation, a technique that has been around for 30 years but only recently has started to make real progress. What excites me about his specialty is that he seems to be knowledgeable about placing stimulators temporarily — and adjusting their positioning and programming with live, real-time responses from the patient — to get the best possible results before committing to actually implanting them.

 I already feel better just thinking that a forward-looking treatment could help relieve a decades-long problem, even if it is only partially — and that qualified, dedicated professionals are willing to give it their best shot.

About the Author - Tim Gilmer

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.

Tim Gilmer

The opinions expressed in these blogs are the author's own and do not necessarily reflect the views of the Christopher & Dana Reeve Foundation.

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 $10,000,000 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.