As I begin the healing process after yet another visit to the Hospital I find myself motivated to blog more. I found the urge curious, then I realized that, for better or worse, the Hospital is where this blog began.
I was at Tufts Medical Boston in 2017 for severe edema. My transplant had failed suddenly in 2016 and I had been plagued with ailment after ailment for months. One of the symptoms was retaining fluid in my legs. After retaining so much fluid in my legs that I couldn’t get my pants or a shoe on. My blood pressure was out of control and I was on the verge of heart failure. I would find later that they removed 30 pounds of fluid from me in 5 days. You read that right, 30 pounds.
When I had my transplant in 2011 I left the hospital like the Tasmanian Devil. I was back to work in 31 days, which was unheard of. As soon as I was able I hiked, biked, screwed, climbed, walked and hit the gym regularly. I had my health for the first time since I began failing badly in my 30’s. The expectation I was given was at least 15-20 years of health before maybe needing another Kidney. When it failed after 5 I was livid. I was mad at the world, mad at my Dr. for not telling me that my particular disease was known to stay in the body and attack the new organ. I felt betrayed, let down and without hope. I was miserable.
My Dr. came in on my third day and asked me if I had any interest in talking to a team of interns. His concern was that the current batch of students were adept at medications and protocols but lacked good ol’ bedside manner. In short, he felt their people skills sucked. He felt that my story would be a good one to share. I wasn’t going anywhere so I said yes. As he was leaving he turned to me and said, “Don’t just spill it, let them pull it out of you.”
Several hours later 5 interns entered my room. They pulled chairs and gathered around me. They asked me several questions and, while following my Doc’s advice, I let them pull it out of me. Over the course of an hour they heard the tale of Bill. Bankruptcy, foreclosure, lost job, divorce pending, behind on rent and a insidious and debilitating disease. One of them actually wiped tears away from her face. I don’t need to be told how it went, they left changed by the experience.
I sat back in my bed that night and it occurred to me that maybe others may benefit from the shitshow that is my life. I knew that one platform was a blog. I had blogged before to mixed results. I wasn’t consistent in my theme or my frequency and I let it die. But this time I was inspired. I wanted to tell my story anonymously to the world just to get it out and relieve the weight on my shoulders. Ok, I asked myself, what is the name going to be? Immediately I recalled an argument I had once had with my wife in which she was haranguing me to be honest and open with our youngish children about the severity of my disease. She was mad that I sucked it up and faked how badly I felt in front of them. That was what I did, it kept them happy. I also hid it from my employer as long as I could for obvious reasons. As the argument peaked she yelled at me, “OK Superman I guess you’re fucking bulletproof!” and stormed out of the room. It hit me.
“Superman can’t find a Phone Booth” was born.
I knew that it was a dated reference. Many of my readers have never seen a phone booth or the old reruns of Clark Kent running to a phone booth and changing into his suit and saving the day. It was a perfect metaphor for how I felt. In the face of evil, in this case disease, I was running out of ways (phone booths) to find a suit of strength to combat my disease.
I swore that I would pull no punches. It would be what my early readers (some of you are still around and I love you for it) would describe as raw, visceral, inspiring and brutally honest. I told my story. One reader commented that it was the best blog she had ever read and posted about it.
There was a time recently that I thought that I was done telling my story, that it had run its course. But now I know that Superman is back. I managed to remove that Kryptonite necklace hanging around my neck. I found a phone booth and my suit is back from the dry cleaner.
Expect some more raw, some more visceral, some more brutal honesty as I continue to tell the tale of the shitshow that I call my life.