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

flavors
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.

Is 1:45 a.m. the new 3:15?

deer
Just one of my favorite photos Adam took. 

At 1:45 a.m. exactly I woke up suddenly last night. There’s no particularly meaning to 1:45 a.m. It’s not like it was 3:15 in the Amityville Horror. But it was kind of horrific.

You see, I was awakened by sirens, but more disturbing, the chugging sound of a fire truck and paramedics heading up the hill. At first, I had that “where am I and who am I” feeling we get when awakened out of a deep sleep. Then my first thought was “Adam, where is he? Is he OK? They’re here for him, finally. It will be OK now.”

I thought maybe, just maybe, this trauma had passed. After all, it’s been more than two months since the last time the paramedics came to our door. It’s stupid, I know. Two months is hardly any time at all. So I was awake, reliving every moment of both 911 calls.

After the first 911 call, I was so relieved and thankful that the system worked the way it did. Adam had a seizure. For a long time, I couldn’t get the sound of the “seizure breath exhalation scream” out of my head. It mostly has faded now unless I think too hard. I remember the woman on the phone, how incredible she was to calm me down and make sure I was doing the right thing. He was out of the seizure by the time the paramedics arrived.

I was so stupid then. I knew it was a withdrawal seizure; I had stayed home that day from work because I had caught him drinking the day before. For the first time in my life I felt like I had handled it correctly. He was scared I would leave him. I held him and told him it was OK; we would work through it and keep trying. But he was fragile, and I wanted to stay with him that day so we could talk about next steps.

I thought it was just the first step on a withdrawal process again. That’s it. I thought “damn, I haven’t showered today and these firefighters in my house are hot.” Because I’m still 16.

I got Adam to agree to go to the hospital. As he was being packed in to the ambulance, our neighbor came out. I just gushed out, “Adam is an alcoholic. He had a withdrawal seizure.” I’ve never even gone over there to tell them he’s dead now. They were always so nice to our dogs; so patient with our lack of yard work. I think they had a son who was figure skater, so we had a connection. I should tell them. I can’t. I don’t want to cry like that.

I called Kathy to pick me up because I didn’t think I could drive. At the hospital, the ER doctor said “Why are you here? We have people who have seizures all the time and don’t come to the hospital.” I wanted to say “fuck you, asshole, if it was your wife, what would you do?”

The second and third times he went to the ER I didn’t call 911, and just took him in. Let me tell you this … call. Use the ambulance and the fast track into the doctor. It’s less stressful than seeing your husband collapse at the ER door.

The fourth time was in October. I couldn’t wake him up. When I did, he only talked to me in gibberish. I knew it was a severe H.E. episode. I didn’t know what to do. Give him his meds and wait it out? No, I called 911.

I had to leave him in bed to open the door when I heard the lumbering sound of the trucks. Suddenly, there were five people in my bedroom with clothes and bras strewn across the floor. Watching them go through the motions with Adam. Later, he told me it was so frustrating. He understood what was being asked and responded, and couldn’t get it when we didn’t understand.

Words again jumbled out as I spoke to a female paramedic. “We have end stage liver disease (yes, I used ‘we’), this is hepatic encephalopathy. I know it is. We’re going to be evaluated for a transplant next week. It’s going to be OK. This happens. This is normal. But I didn’t know if I should give him his medicine or he should go to the hospital.”

This woman knew what questions to ask me. She had some familiarity. I wish I knew who she was to say thank you.

Is this what PTSD is? To have a sound send you spiraling back downward?

I think everyone thinks I’m better now. I engage more. I argue at work. I laugh every once in awhile. I tell morbid jokes (which is the right of every widow). But it’s not that I’m better. I have “better” moments. I have “better” days. I made breakfast this morning. I am going to try to clean the house again today. No, really. At least I’m thinking about it. The Bix and I will go get cold and muddy at the park.

I have never been lonely in my entire life until now. I have certainly been alone but never lonely, but I sort of get loneliness now. I lived with Adam for 14 years. We spent lots of time apart because we had our own lives, but in the end, we were always there for each other. God, I hate saying I’m lonely. I feel so fucking pathetic. The one thing I never have been.

But what are you supposed to do when the worst things happens, and the person you always talk to about the worst things actually was the worst thing that happened. Try that on for a brilliant sentence, eh.

Anyway. It’s Saturday. Is there football on?

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.