Holding Out Hope for the Day When Pain Shall Be No More
A columnist describes the immense toll of living with chronic pain
“Definition of chronic pain: being constantly in pain. Yes, constantly. Every single second. The person is smiling? Still in pain. The person doesn’t mention it? Still in pain. The person says ‘I’m fine.’ Still in pain.” — Unknown
Chronic pain has been my constant companion for the last 17 months. The intensity has varied from annoying to excruciating. Lately, sleep has provided relief, but drugs have become less and less effective.
There were days throughout this period when I found myself in a hospital bed, IVs in both arms, unable to speak, eat, or drink. I would nearly reach the point of no return, then claw my way back from the brink. The pain would be replaced with the dread of it returning.
It always returned.
If one hasn’t known this sort of suffering, it’s impossible to fully understand. Despite the love and support of family and friends, profound loneliness often accompanies these periods. The truths one holds may be shaken. I tend to echo Christ’s words of despair on the cross: “Eloi, Eloi, lama sabachthani?” (“My God, my God, why have you forsaken me?”)
Sharing in suffering
I have a wonderful circle of friends who have been a part of my life for more than 48 years. Three are brothers: Ned, Brook, and Gil. In 2017, Gil was diagnosed with multiple sclerosis (MS). In 2020, I was diagnosed with myasthenia gravis. That same year, Brook began suffering from a mystery illness.
Earlier this year, to our great sadness, Gil lost his battle with MS. A tall, athletic, handsome, life-of-the-party sort of guy, he had suddenly been laid low by his illness. Gradually, he lost the use of his legs until he needed a wheelchair full time. A basketball fan, Gil loved pick-up games with his two boys. He was so proud when one of his sons won a full basketball scholarship to college. Unfortunately, Gil’s pain and mobility issues meant he couldn’t attend any of the games. This broke his heart.
Around the same time that Gil died, Brook’s suffering became intense and constant. We texted each other regularly, as different time zones made phone calls irregular. He often expressed the despair brought on by his illness. Devoted to his family, he saw himself as a burden. I understood completely, and I know our conversations helped him deal with the pain. I was able to lessen the burden.
Eventually, Brook’s illness progressed to the point where his only relief came from lying flat on the ground. Last week, his body could take no more. His wonderful, loving wife came home and found him dead on the floor. He was no longer in pain.
I think back to memories of Brook before the pain. Sharing YouTube clips, newspaper articles, and jokes was once a fun part of our friendship. When chronic pain entered our world, they provided distraction, and for a brief time, the pain was forgotten.
We became compatriots in suffering. Just saying, “This hurts so much and is so unfair,” provided comfort. No platitudes. No making light of the pain. None of the discomfort the healthy sometimes feel when someone’s in pain.
I attended Catholic schools growing up and was taught by the Sisters of St. Joseph that suffering could be a source of sanctification. They would say that when we experience pain or suffering, we should “offer it up for the suffering souls in purgatory.” To a young grade schooler, this seemed weird. Why should I suffer to benefit someone I don’t know?
I forgot all about that proposition until last December. I was in the midst of a myasthenic crisis and couldn’t talk, eat, swallow, or breathe easily. My saint of a sister sat with me for hours and did all she could to ease my suffering. To break the dark mood I said, “Let the [expletive] souls in purgatory get themselves out!” We laughed, and for a few brief moments, the pain eased.
I still haven’t found answers. Why did Gil suffer from MS until he could bear it no longer? Why did Brook’s suffering end with death instead of a breakthrough cure? Why am I the one left standing?
I keep motivational speaker Josh Shipp’s words in mind: “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.”
Brook never grew bitter. Despite being dealt a rough hand, he became a better husband, father, and friend. I’ll miss him. But I’m determined to push through the pain. I intend to be around on the day described in Revelation 21:4, when “God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.”
No more pain. I like it.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.