Is 1:45 a.m. the new 3:15?

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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

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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.

 

 

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.