From the day my mother introduced us when I was eight, I’ve believed my step-father was my hero.
He is a strong, hardworking, honest man whom I saw as indestructible. He was an auto mechanic for over thirty years, and did not rest until he taught me how to fix my own car.
I have seen him get his hand slammed in a hood, steam burns from a radiator and cuts that would send most to the hospital. Not my step-dad, he always shook it off and carried on.
After arthritis of his hands set in, he traded his wrenches in for a foreman position at a factory in his home town. My step-father worked nearly everyday in hot, demanding conditions without ever a complaint.
Then, one day, everything changed.
A large bundle of steel broke free and crushed his foot. After the treatment we all thought would repair his foot, it just would not heal.
Through many diagnostic evaluations and months of waiting for a reason, a diagnosis came: CRPS/RSD.
His treatment began with medications, spinal blocks, physical therapy, and orthopedic footwear. Slowly, he seemed to improve and returned to work. He is not a man to keep home.
But, after a few weeks back at work, a small sore on his foot caused his entire foot and up his leg to become swollen and inflamed. He would say even the air hurt. With all other complications ruled out, he was told it was a flare of his CRPS/RSD. Again, he was home and miserable.
It has been almost a decade, and his flares come and go. Some are worse than others.
I am a Registered Nurse and for years worked at a regional pain center.
I was sure to be on top of any flare of his CRPS/RSD he had and got him the best medical attention I had access to. He has found a way to deal with the pain and control the triggers for his flares.
However, I noticed it taking a toll on him. He’s started using phrases like ” You can’t possibly understand what this feels like” and ” I don’t even think my doctors get it sometimes.” No matter how much I listened or educated myself, he was right–I didn’t understand.
It was if I was watching this man that I idealized so much lose that spirit that always kept him going when most would not.
Then, I was reading on the Internet and came across a story.
I feel Your Pain: The Power of Witness in Group Support is a wonderful story about individuals with CRPS/RSD, coming together, in person, to share their experiences and discuss their disease.
What a simple, but genius concept. I ask myself after reading this article:
“Why didn’t I think of that?”
I will now find a way to encourage and assist my step-father in seeking out similar face-to-face support, as I feel it will help for him to find people who do “understand”and truly be heard.
It just goes to show, it doesn’t matter how much schooling we have, you can always learn from the insight of others.
