We're In It for the Long Haul

Posted by Tim Gilmer in Life After Paralysis on January 25, 2023 # Lifestyle

Tim and his grandchildrenJust recently, I got a call from a friend who was facing a difficult operation and feeling, in his words, “very discouraged.” As a longtime quad who is in his 70’s, he has seen more than his share of operations, complications, and setbacks. But what bothers him most is there seems to be no end to the complications as we age. He is grieving the loss of his earlier quality of life. Getting discouraged is understandable, especially if you cannot seem to summon up that positive spark you need to go forward. It is also a sign that you may need to try something new — or perhaps reach back into the past to revisit a success you experienced earlier when things looked dark and foreboding.

My friend is dreading a months-long battle with a pressure sore that will culminate in flap surgery and months of recovering in bed. How he fares will depend not so much on the technical side of the surgical details, but more on the positive energy and willpower he must find within himself. He will also need to depend on family and friends and any resources he can find within the disability community. It’s a dual challenge — summoning power from within and making good use of whatever tools and human resources he can call upon from outside himself. In other words, he must reach out for help and avoid creeping depression. He must not fall prey to self-grieving and obsessive self-worry.

I have learned this the hard way with many operations, complications, and difficult recoveries myself. Each time I had to reach back to an earlier time and remind myself that I have always found a way — somehow — to fight the good fight and move on.

Just today, I reached back to my pre-SCI days when I was working a summer job in a potato-packing shed in my hometown. The days were sweltering hot, the hours were brutal, and the work never seemed to end. Up at 5 am to get to work and open boxcars at 6 am, work until 8 or 9 each night, lifting and stacking 100-pound sacks of potatoes. Eat a late dinner, go to bed, dream about spuds and wake at 5 and start all over again. My hands were raw from handling burlap bags, my feet had blisters from pushing a hand truck for miles each day, and my energy was sapped by excessive sweating and too-little sleep. Day after day after day with no days off.

What does this have to do with getting through flap surgery and months of downtime in bed? Everything. It requires the same never-give-up mindset and commitment to finishing a difficult challenge that you cannot afford to give up on.

The mental toughness needed to get through prolonged “bedrest” (translated: muscle-wasting prison) is even more demanding than 14-hour days of nonstop physical labor. I have found what helps is taking an active interest in doing all the routine, prescribed health behaviors, like eating sufficient protein to boost healing and taking supplements recommended by your doctor. Attention to doing range-of-motion movement in bed, with help, can keep aches, pains, and stiffness at bay. Finding a way to use bands while in bed can help, not only because of the activity but also due to the daily routine of keeping your mind and body activated.

But there are still days and long nights when creeping depression will bring you low. For me, personally, these are the times when my faith keeps me going. It has taken me years of praying and relying on my ever-present source of support, no matter how weak my faith might get during dark times. My source is spiritual, lives both without and within me, and will always be there. In short, Jesus is my rock.

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 my early post-SCI years, as part of a compendium of my writing over the past 30 years, can be read at my 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.