Remnants of Hope

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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.

 

 

Mornings and Harry Potter

Shit, they weren’t kidding. Mornings ARE the worst.

christmas
Thanksgiving 2015 at Barbara’s house

Shit, they weren’t kidding. Mornings ARE the worst. First, you have been in bed for 10 hours but you don’t think you slept ever at all. Every time you wake up, you think “Adam is dead. He’s not coming back.” Then you will yourself to go back to sleep.

I don’t eat well in the morning over the last week. I used to love a big breakfast. Now I just hope to get hungry.

Came downstairs, and my mother-in-law had Harry Potter on. Reminded me of Adam in a good way! He always settled on Harry Potter if there was nothing on, or even if there were choices. He loved those movies. He never read the books, so it was always fun to go see each movie with him because he had no idea what would happen! Bummed that he can’t see Fantastic Beasts with me.

I’m worried about coffee. Adam tried to teach me about making a pot, but I could fucking never get it right!!!! He made the damn perfect pot of coffee. While he was in rehab I gave up and resorted to Starbucks Vias. His mom does a pretty good job, so did my sister when she was here. Should I just bag it and live with Vias? Should I keep trying? What’s the magic scoop to water ratio on a good strong pot of coffee?

Way too much crying today. Today, I am mad at Adam for leaving me. I’m not afraid of being alone. I’ve spent more of my life without Adam than with him. I just don’t want to live without him right now. I get it … I’m in shock, trauma, the worst stage of grief … that doesn’t make it better.

So thankful that I have friends here finishing up house projects that Adam never finished or couldn’t get around to. I’m realizing the depth of his depression that was mixed in with the addiction. I try to think of what he did that he enjoyed over the last five years. He wasn’t biking, doing pottery, playing music. He had his gadgets, his computer, sometimes he had work.

Why didn’t I realize that he was still drinking as much? Keep needing to remind myself that deceit/lying wasn’t a character flaw, it was part of the disease of alcoholism.

Bringing Him Home

Today, I brought home the ashes of my beloved, Adam Michael Curry, who died on November 3, 2016, at the age of 43.

I don’t know what I would like to do with the ashes. They are just in a plastic box now until I find the appropriate Star Wars container for them. I think he would like that. Star Wars brought us together, Star Wars ran through our lives. Deciding on the exact Star Wars container will be the hard part. It’s not like I’m going to put him in something with Jar Jar Binks on it.

I received the death certificate with the ashes, and I was too curious not to see what the cause of death was, even though of course it was all related to cirrhosis of the liver. There were four causes listed:

  • Multi-organ system failure
  • Hemorrhagic shock
  • Variceal bleed
  • Cirrhosis due to alcohol abuse

None of this was a surprise to me. Adam had been fighting alcoholism … true alcohol dependence … for a long time. I read on the CDC website that only about 10% of excessive alcohol drinkers are actually dependent. Of course, the doctors and counselors all knew Adam was of that 10%. His brain had been rewired by the disease, he tried to stop and was successful multiple times, but kept going back even though he had been originally diagnosed with cirrhosis in 2011.

I tried everything … sort of a dumb cliche, because I finally had to learn his addiction wasn’t in my hands. Rationally, I know that, but it’s still hard to not want to play the blame game with myself: what more could I have done? I left him, gave him ultimatums, he went to rehab. Eventually I realized I would never desert him. I told him I would never leave him and would stay by his side forever as long as he kept fighting and trying. And he did.

When he died, he was 72 days sober. We were at the Anschutz Medical Campus, part of UC Health in Denver, for liver transplant evaluation. We were being evaluated despite not having the six month sobriety rule most transplant centers have. We were so lucky to have that opportunity; we were told it was because of the support system Adam had … and because our GI doctor believed in him, too. I was his biggest advocate. I knew his disease inside and out. Our motto was “Follow instructions; do what the doctors say.” Adam had decided he wanted to live. As a friend said, he was rewriting his story on sobriety. It just turned out to be too late.

We were deferred from the transplant list of course, and we accepted that. They wanted to see just more counseling and see the commitment to sobriety. But on the day we were deferred, he took a turn for the worse and never left the hospital. I kissed him good night on Oct. 26. We were watching the World Series. We were going home on Thursday, counseling appointments set, ready for the next fight.

On Oct. 27, when we arrived at the hospital, we couldn’t wake him up. He was having an episode of hepatic encephalopathy. Hours later, they called a medical emergency as he was struggling to breathe and there was evidence of another variceal bleed. The MICU and liver doctors saved his life that night, and I am so grateful, even though I just had a week more with him.

He woke up long enough on Nov. 2-3 to talk with me and his family. We shared our love for each other. He was so glad to be off the respirator. I’m not sure he really understood he was dying, as his brain was never quite clear. I hope he didn’t. I told him we were making it and going home again. I have no regrets in that.

I remember these words from him: “We’re going to be O.K., honey.”

I lay in bed with him for hours, listening later as he talked nonsensically. I hardly left the room or ate for two days. I held him as he breathed his last at 10:42 p.m., his mom, dad, sister, my sister, his step-mom, step-brother, and 3-week old niece by his side.

Now I am alone. A widow. My future crushed. We had no kids, just our dog Bixby. We had no big plans in life; we just enjoyed each other, expected to grow old together. Now, I’m left wondering what my life is and will be.

I have wanted to die with him many times in the last week. But I’m an atheist. I know death will not bring us together; it just is an absence of pain. Adam knew the pain he was causing me, and I know he wants me to be free. I will love him forever, have a hole in my heart forever, but I am going to fight. Fight for happiness again.

I will not go quietly into the night. (I’m quoting Independence Day here, and Adam would love me for it. Mostly.)

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Adam and I in the hospital Oct. 26. We were encouraged and optimistic. The beginning of the end started after I kissed him good night.