I thought it would be easier transitioning to a new community — a fresh start and hopefully a way to escape the pain. At home I knew people had accepted my health condition and understood that it’s not in my nature to be lazy. My friends and family knew me before my illness. They skied, biked, climbed, ran, swam, rafted, hiked, and adventured with me. They knew who I was. It’s hard not having that same recognition here.
So why has transitioning to a new community been difficult? Because of my fear, or as I put it:
“I am afraid I am regarded as a lazy, awkward, spoiled wife that doesn’t deserve her husband. How do I get past this?”
I used to be:
As I look at that list I realize I still have all of those characteristics. I deal with a pain that makes 50 percent of people with my condition end their lives; I feel many in the general population would implode if given this condition. Sometimes I even walk around in that much pain — that takes strength!
I visited over 54 doctors, specialists, naturopaths, acupuncturists, psychologists and witch doctors to find a cure and although I’m enjoying my break, I’m willing to go to that many more. If that’s not tenacious, I don’t know what is.
I didn’t watch TV and always found something active to do instead. I thought this was being creative with my time. But being creative can also mean cooking a meal on a restricted diet, finding a way to get across the country in a van when you cannot sit for long periods, finding new ways to connect with friends I only used to be active with, or figuring out intimacy with my soulmate.
There hasn’t been a climb to the top of an alpine peak in a while, but I still consider myself adventurous. Being adventurous means taking risks. I take risks in my diet. I take risks with my daily activities. I am learning to be more adventurous as I get rid of my fear of the pain.
I am now spontaneous with constraints. For example, when I am feeling good, I am up for any activity barring my physical limitations and dietary restrictions.
I was voted the funniest patient in the operating room. Humor runs strong in my veins.
I even gained some bonus characteristics including:
I had no idea there are people in the world who don’t leave their homes, sometimes not even their beds, because the pain is so horrible. I have been one of those people for the last three years. I am 34 years old. I have empathy for any being who struggles.
When you have faced your worst fears and start to get over them, a sense of peace can come over you. Other problems are no longer significant.
Doctors still tell me I am “crazy.” That there is nothing more they can do for me. That I am manifesting the pain to fill a void in my past. Bullshit. I know it. My husband knows it. We will fight hard for answers. We are resilient.
With $20,000 in medical expenses last year (with “good” insurance), I cannot afford not to be resourceful.
I moved to this new community for the summer for my husband’s work. I thought I had to define myself to everyone I met to feel accepted. But I only had to define myself to me.