“Do what you can, when you can.” These seven words have carried him through hardships and triumphs. In 2005-2006, they even spearheaded his crusade to walk the entire Route 66 to raise awareness about chronic pain.
Little did Dennis know his motto would be so fitting in describing the opioid-induced constipation (OIC) brought on by the use of the opioid pain medications so necessary for his participation in and enjoyment of life!
In ten months Dennis walked 2,400 miles with a wheelbarrow containing his personal possessions. He slept in a tent and visited pain clinics and hospitals along the way to discuss pain with others. Extraordinarily, Dennis accomplished this long trek while dealing with his own pain.
His chronic back pain began over two decades ago after he twisted his back moving a freezer. Then in 2001, doctors diagnosed him with ankylosing spondylitis and Paget’s disease. Ankylosing spondylitis is a form of arthritis that causes inflammation in the spinal joints. Paget’s disease involves abnormal bone destruction and regrowth. Although the diseases have begun to attack his internal organs the past three years, he has been able to put type 2 diabetes, prostate cancer and kidney disease in remission.
OIC was Dennis’s biggest concern when he walked across the country, mainly because he never brought it up, to anyone. He found it tough to bring up even to a doctor, and did so only recently. And in 15 years no doctor had ever asked! Dennis found this to be amazing.
He wasn’t sure how the OIC would affect the Walk, either the walking or the stopping to do speaking engagements.
By the time Dennis did the Walk he was used to going about every three or four days. For Dennis, it is still like that: sometimes one or two, mostly three or four, sometimes five or more days without going. He thought that walking all the time, 25-35 miles a day, for a year, would take care of the problem, but nothing changed. Except that it wasn’t uncomfortable anymore if he just let it be.
Dennis tried all of the remedies he could find but none seemed to make a difference except natural laxatives. However, with laxatives, things became so unpredictable, he just couldn’t do that, especially on the road. So he just did nothing, choosing to just forgot about it. It was tied into “Do what you can, when you can.” Dennis is not a proponent of doing nothing, but he came to understand that it was different with OIC.
As his spine and bone disease has gotten worse, Dennis has been able to ward off a lot of diseases and sickness trying to attack his organs, the next step in his disease’s progression. He seems to be able to do this by just accepting that the OIC goes along with the meds, the meds that allow him to have enjoyable days.
Dennis believes acceptance is important. He says, “Maybe it’s like the sleep anxiety problem I had when I first was a single dad. I was working graveyard shifts. Between taking the kids to school and doing daily chores like laundry, I was only sleeping four hours a day. I was worried that I wasn’t getting enough sleep. This caused me to go down to one or two hours of sleep! I would just lay there and stare at the ceiling and think, ‘Boy, is it gonna be a tough night at work!’ Then my friend said, ‘Look at all you get done! You are doing a lot and being a good dad. Maybe this is the price. Just quit worrying about it!’ So I started doing relaxation and meditation and just accepting sleep as it happened. I still was only getting three to four hours a day, but I was happy with that. The worry went away. To this day I only sleep four hours at a time!”
Since 2004 Dennis has been dealing with OIC by not dealing with it. He accepts that about every third or fourth day he will be able to go, and he goes fine. He feels his time now is like a trade-off between enjoying his life and dealing with severe pain and sickness. He does what he can, when he can, and he does it as much as he can. But he will never sacrifice his enjoyment. This means he tries to eat well all the time; he tries to exercise as much as physically possible; he sleeps when he’s tired, (he’s lucky because he can get away with that), but most of all he tries not to worry about things – tries not to give negative things too much weight. Studying the amygdala, Dennis has learned about “fear-memories,” and he believes that the way to fight them is through enjoyment and relaxation. This is what he does now. Quips Dennis, “Like Paul McCartney says, ‘Let it be, let it be.’”
Today, Dennis is housebound and nearly bedridden in the advanced end-stages of both conditions. Art, drawing, writing and music help him stay busy. Breathing, stretching and relaxation are now exercises that keep him physically and mentally strong.
For the first 14 years of his pain journey, Dennis experienced many negative feelings, like anger, fear, anxiety and denial. He lost his wife, job and home. It took time for him to accept pain, and what he calls “the positive side of the pain cycle.” Pain ultimately led Dennis to a better place. He met the physical therapist that showed him how to hold on to the “big picture.” Everything that was sacred to him he had previously taken for granted: pain made him grateful for the gifts in his life.
Says Dennis, “I feel very lucky to be still alive. The doctors all said I was near the end five years ago! Maybe it helps that I don’t like to use up my time with worry or fear or negatives. Maybe there’s the lesson. The drugs I take give me some discomfort, but they also allow me more time to enjoy my life. Happy and productive, that’s my mantra. Maybe instead of ‘Let it be,’ it should be, ‘It will be what it will be.’ LOL! May life be good to you.”