When I started this blog, it was devoted to writing about chronic illness – mine and others. I think I want to expand that now that I have a new liver, and I’m officially a transplantee. So now I write about that.
Every transplantee believes that their new organ will last another 25 years. No one says that, but in their own minds they believe it. Otherwise, what’s the point? Especially the young ones believe that. I think. I don’t know, because I was 68 years old when I got my new liver. But I was thinking 10, maybe 15 years. Yeah, that’d be good. A younger person might go for the 25 or even more.
I don’t know how old Josh Halberg was when he got his first transplanted liver, or even his second one. I know he was suddenly very ill when he was 22 years old, his parents took him to a nearby hospital, they discovered a large tumor on his liver and said he had two weeks to live. Two weeks! And he was 22. But he didn’t die, and he ended up at University of Colorado Hospital in their transplant center soon after. He received a new liver within a fairly short time after that. But that still could have been a few years; the waitlist there is long. I am positively certain, though we never talked about it, that he was thinking along the lines of 25 years, maybe even longer. Then the PSC recurred. He had the same liver disease I did. My friend Adrienne Baker, who also had what became a chronic illness trying to kill her, called her disease “craptastic.” I liked that word, seemed perfectly descriptive, so I called PSC craptastic as well. It is. It’s cruel and it does really mean things to people’s lives who have it. You’ve heard that litany from me, so I’ll spare you. Josh had what most other PSC patients had along with it – an intestinal bowel disorder, and his was ulcerative colitis. Really, really craptastic.
Josh didn’t complain a lot, though. He didn’t used the words I did to describe his digestive system disorders. He was smart that way. But sometimes he confessed to me that he felt like his faith was pretty small and he limped through those times. I despaired in the face of the immensity of his faith, and that’s how we talked about it. I think he was trying to make me feel better and bigger about myself. It worked, and my faith would grow every time I talked to him. Just a little, but it grew.
He finally got another liver in August 2014. I remember seeing the announcement on Facebook. He was at work at Rocky Mountain Urgent Care Center, where he worked hard as an EMT, taking care of other people with fairly minor things going on. Another staffer, a good friend of his, snapped his picture right after he’d heard the news and before he left for home and then the hospital. He was a little pale and grey in the face, but he had a huge smile on his face. He was happy and everyone around him, everyone who knew him was thrilled out of their minds for him.
I’m certain, absolutely certain he thought, wow, another twenty years or so of life without being sick. But it was two years and one month. Is that fair? Hell no. Nothing at all fair about it. Did he live those years like he had a whole bunch more years out in front of him? Hell no, he didn’t. He traveled all over the world – sometimes with his parents, but now most of the time by himself. He went to exotic countries, remote countries, really fun places like Puerto Rico, then out to southern California where he was born. He always mentioned going to an In’n’Out and what burger he ordered; he loved that place. He had to be gluten-free all the time, but he managed to eat everything he ever wanted. And would try some of the most disgusting foods on the planet. On a very recent trip to China, he selected a really creepy-scaly-looking scorpion or lizard (photo on Facebook), thought he’d eat a leg or something small and said it turned out to be a thick yellow crunchy goo. I’ll never ever forget that description. Ewwwww, I told him on Facebook.
After I learned of Josh’s passing this past Friday morning, September 30, 2016, I fell into a tailspin. Eventually I thought of that first sentence in the second paragraph I wrote about thinking, we transplantees, we had 25 years on our new livers. Wrong. We all, all of us humans live on borrowed time. And some do a better job of it than others. Josh is a paragon of how to live no matter what your odds are. He also traveled a lot after his first transplant and after recurrence of PSC, with his wonderful parents, Todd and Candie Halberg, all over the world. Constantly, it seemed. They were grand adventures. Josh lived large. And in love. I hope that kind of living for all transplantees, for all my friends and family, and for myself.
I learned a lot from Joshie, my friend. And he changed, forever, my perception of life and death and illness and how to best live a human life. Thank you, Josh Halberg. You will remain in my heart forever, whispering, urging, inspiring.
“To me, poetry is somebody standing up, so to speak, and saying, with as little
concealment as possible, what it is for him or her to be on earth at this moment.”