It’s a Cruel, Cruel World, and I’m Living In It

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With a couple of the volunteers I worked with at Flavors of Denver; I think that’s a fake smile on me.

I’m going to share something I’m not very proud of. Big surprise, but I’m not perfect. Sometimes, things go through my head that are cruel.

Over four months ago, when I decided to direct memorial contributions for Adam to the American Liver Foundation, I also offered my time as well. The good folks there immediately signed me up for their biggest fundraiser of the year: Flavors of Denver. At the time, it seemed like an awfully long time before that would happen. But happen it did, and I drove up to the Wings Over the Rockies Air and Space Museum last Thursday, camera in tow, podcast keeping me company.

I did not realize how difficult this would be. I did not expect the flood of emotions that overwhelmed me during those five hours. Later, someone suggested that maybe it was part of the healing process. I suspect it was.

My first job was as “step and repeat red carpet photographer,” a perfect job for someone who has spent years snapping pictures. I just greeted the guests and invited them to pose in front of a banner. Not difficult. But things started to unravel for me emotionally.

First, the “hero” kid came by. This is the young man they were using as an example of what funds were being used for … to save lives. I didn’t know his story; all I knew at the time was that he was a transplant recipient.

And I hated him. I hated this cute little kid so much it was overwhelming. While I was taking photos, I would sneak looks at him and his family, and I hated all of them, all of their smiles. Why was HE alive?

But then, a familiar face came through the line. I had expected it was possible that doctors from UC Hospital in Denver would be there, but actually face to face with one was different. I didn’t immediately remember her name, but I knew it was the P.A. during the transplant evaluation. She was the one who asked Adam “Is it alcohol abuse or alcohol dependency?” “Is there a difference?” Uh, yes there is, and Adam was dependent.

I introduced myself and briefly jogged her memory. She remembered me, remembered Adam’s mom, and said “That all happened so fast.” I told her (with a couple of tears forming) that I was doing OK, that I had survived. She was happy to see me volunteering.

The night wore on. While everyone ate, I perused the vendor booths, stopping at the UC hospital transplant team’s table. I browsed through their brochures with pictures of their doctors, memorizing their faces, recognizing a few.

I headed out to the floor where I would help with the live auction. I recognized those doctors there now, and I silently judged them if they had wine on the table. “Who are you?” I thought, “You judged my husband for drinking yet you sit there drinking. At a fucking event to support the liver.”

And then this family went up on stage to share the kid’s story. I listened, and I cried. I was still angry. I was angry because even if my husband had survived to get a liver transplant, do you think he would ever have been held up as a “hero?” Would he have been set up as a success story? No. Because there are people out there who think he had no right to be on the list in the first place.

Doctors of the world … make a decision. Alcohol-use disorder is either a disease (which is CLEARLY FUCKING OUTLINED in medical journals) or it’s not. If it is, stop the fucking judgment.

And then the P.A. stopped me again. She said, “The doctors who worked on your husband aren’t here tonight [a hepatologist and a GI dude], but would you mind if I told them that you were here, and you were OK?” I agreed. I said “Please do because I was certainly up their asses during that whole time.” Yes, I’m pretty sure I said that. Part of me wanted to say “Sure, tell them I’m OK, no thanks to them, and I fucking hate them and all of you.”

But I didn’t. Because I don’t.

I am having trouble with forgiving the transplant group. I really am. I’m working through it now that I have acknowledged it. But it’s hard. They aren’t responsible for Adam dying. They were just the last spoke in a large wheel, the very last one.

During the live auction, I was floored about the amount of money NOT being raised. I wanted to grab the microphone and scream “What the fuck is wrong with you people? You’re at a fundraiser! You just heard the success story, now hear the sad story … the story of the people who are dying because we haven’t found the answer yet.” Would that have helped, I wonder?

At the end of the night I introduced myself to the mom of the hero kid and the kid himself. I cried and said “My husband died before he was listed.” I told the kid how happy I was to see him alive, that he got this chance, that his life is going to be amazing.

And I meant it.

Remnants of Hope

stmarysfall
St. Mary’s Falls hike. Uphill. Seven miles. Out of water. We did it. 

Coconut water. Low sodium V8. Six Triscuits and six dried apricots in a Ziploc bag. A half-eaten roll of SweeTTarts. Low sodium pasta sauce. These are the things I stare at; the things I have to throw away. The remnants of the last hopeful part of my life. When Adam and I were doing everything to keep his body going. It didn’t work.

Maybe it gave us some weeks.

Liver disease is full of complications. It is these complications that usually kills. I started following Cirrhosis Remedy on Twitter, among other liver accounts, but just had to stop. The reminders of the complications and the anxiety were too much.

Jaundice. Ascites. Portal hypertension leading to variceal bleeds. Hepatic encephalopathy. Muscle wasting. Fatigue. None of these were a surprise to me as they came as I knew this disease. I knew it for Adam so we could be prepared. We fought through every symptom. Now I have to throw away the remnants of our hope. Perhaps in many ways that is good because that’s not who Adam was or what we were about.

Is it fate that the surgeon general came out with his big report on addiction this past week? His message is mine. Addiction is a brain disease, not a moral failure. The full report is available here: https://addiction.surgeongeneral.gov/. I haven’t read it yet either, but I just gave you the summary. We need to help people with addiction with a full frontal assault, not judge. I can only hope that this is a step toward saving another husband or wife or parent or sibling from the pain and despair I am experiencing.

I can’t get the sounds of the hospital out of my mind. There are three distinct beeps. The IV. The respirator. The blood pressure. Each one different. I learned to sleep through the occluded IV sound. The respirator beep just meant someone was maybe moving him. The BP sound was the harbinger of death.

It is the one that haunts me.