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.

 

 

Rogue One

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Queuing for the JJ Abrams panel at Star Wars Celebration VII in Anaheim, April 2015 (through a fish-eye lens!)

I am aimlessly on my phone and computer all day and most of the night. I hope for some new story on CNN or Slate or any outlet even thought it’s just been five minutes since I checked the last time. I am trying to find more people to follow  on Twitter so my feed keeps moving. I don’t eat most of the day but then can’t stop eating at night.

A friend came over today. The refrigerator got fixed. The dog got walked. I brushed my teeth. Showering was too much to think about.

I went to get some food for dinner, and the cashier noticed my R2D2 wallet as everyone usually does. He started talking about Rogue One coming out next month. I played along as if I still had the excitement for the movie I once did.

When Adam first got really sick at the end of August, I would tell him he needed to keep fighting because Rogue One was coming. We were going to see that together … he promised me.

In April of 2015 we went to Star Wars Celebration VII in Anaheim. I think I’ve only missed on celebration. The first was in Denver in 1999, which I went to by myself. Adam and I traveled to Indianapolis, Orlando, L.A. and Anaheim for subsequent celebrations. We absolutely loved them. You spend so much time standing in line it’s crazy, but worth it.

In Anaheim, we randomly met and talked up Oliver Steeples in a bar. Oliver was an ordinary member of an R2 Builders Club and was plucked to work on Force Awakens.

Because we liked to sleep, we didn’t spend all night waiting in line for the JJ Abrams panel, but we did get there early enough to get in an extra room. So we didn’t see JJ live, but we were there for the first Force Awakens trailer. We both cried when Han said “Chewie, we’re home.” What a feeling.

Later we got in the panel for Rogue One. Filming had not begun, they had nothing to share, but they did anyway … something they just created for those of us there. We’ve been waiting for that movie forever because of this little fake trailer. Yep, we were in that audience. Now, he’ll never see it. This is breaking my heart.

I had already bought tickets to Celebration in Orlando in 2017. Have hotel reserved. We had hoped to be there and then spend a couple days in our favorite spot in the world where we were engaged: Cocoa Beach, Florida. I haven’t decided about those tickets yet. Maybe I will go by myself. Maybe I will sell those tickets for big bucks. Maybe there is a friend out there who doesn’t mind aimlessly wandering hallways and the vendor room, standing in long lines, losing terribly in the Bounty Hunt. Adam and I were just always on the same page about what we wanted to do at these events.

Fuck. I miss him.

My first complete panic

The saga of the email servers.

This was the first thing that had me completely at a loss. Could not figure out why/how I couldn’t access our emails suddenly. I was up till 3 a.m. calling all sorts of 24/7 help lines. Today, a wonderful woman named Christine at Insider Hosting spent an enormous amount of time tracking things down for me. I have access again. I know what to do in the future (I think).

This was horrifying. I kept thinking “I’ll just ask Adam and he will help.” Then it would hit me he couldn’t help and I panicked. Hysteria. Thank you all who offered advice. I feel like this was my first real accomplishment. But it made me want to die all over again. I just am so lost. What do I do with Adam’s business website? How do I save the files? What do I save? What do I delete? This horror is too much to bear. I hate this life.

But thank you to the people who have reached out. Those who have sent food or gift cards or gotten me to eat: Andy N., Mickey and Robyn, Andy G., Amy, Kelly, Christine and Dave, Mark, Dan, Hollie, Lisa, Molly and Angus, Steve, Laurie, Jen, the Coffee Club, Brenna… who I am forgetting? Amy texts me to remind me to take my meds. I have received every card and read every txt and email, listened to every voicemail. The energy to respond is too much.

I feel like I’m becoming every woman I didn’t want to be. Feeling hopeless and sad and empty. I didn’t want to be broken. I wanted to be strong. I want to tell Adam’s story. I want to help others in addiction. I don’t know who I am anymore.

Don’t leave wings where the dog can get them…

usAnd I thought the Bix just stayed on the bed with me for 12 hours.

Nope, left two boxed chicken wings in reach and found the box on the living room floor. Bix knew he did something “bad” and was scared. I was just scared he was OK. I mean, those bones could kill him and that sauce could give him the runs. I told him it was OK. Probably not the best idea in dog training but it was MY fault for leaving them in reach, right?

He seems fine.

Today, it’s early episodes of Law & Order! Yay the Ben Stone era!

I thought getting out last night would help today. Nope. Didn’t get out of bed till noon. I did fall asleep at midnight which was good.

That fucking movie last night: Arrival. It was good, but spoilers here. Don’t read if it bothers you.

 

So much of the point was “If you knew the future, would you still do everything the same, even if there was pain?”

Last night the answer for me was yes. Of course, if I knew what the end would be I would still do it all over with Adam. But in my sadness moment today I thought “no. Fuck that.” That is how hard this grief is. I didn’t mean that of course. My 17 years with Adam were awesome. We had some hard times, but we stuck together. I don’t know who originally said it … but the first time I heard it was from Ossie Davis about his wife Ruby Dee.  But this was what I said to Adam all the time in some form:

“Love does not consist in gazing at each other, but in looking outward together in the same direction.” 

Further reading now says it came from a French novelist named Antoine de Saint-Exupery.

That’s the way I felt. I always felt life was often full of some shitty things (though all those shitty things seem trivial now), and marriage was about having someone to deal with it all of it together. The person you could share thoughts and jokes with that you wouldn’t share with anyone. The person you could do with this: https://www.youtube.com/watch?v=wEh3IxROChU.

Seriously, we laughed our asses off (pun intended) on that one. Hadn’t been forced to do that with each other yet, but we were like “that’s so coming someday!” I mean, how do you find THAT again? Do you even want to find that again?

Those times when you say something totally mean about someone or something in the world, and then follow it with “I’m so going to hell for that.” And your husband laughs and says “I’ll be there with you.”

 

 

Sorry about this one

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Oct. 31, 2015 at Steve and Claire’s wedding

“There’s a grief that can’t be spoken. There’s a pain goes on and on.” ~ Les Miserables

I know many of you have felt grief. The deep grief of death. I know it will touch everyone, but right now I wish I could protect every single one of you from this. Let me be the last person to feel this while the rest of you live in happy oblivion.

“They” don’t tell you that you will want to die. You will have to figure out yourself that there’s a difference between “wanting to die” and “being suicidal.” Those around you might not understand that difference, but it’s there. You don’t have to go calling 911 on me.

I have been voracious reading about grief. Much of it is not comforting. It’s daunting to realize there is nothing to be done for me to make this part go faster or just go away. I have to “numb slog” it through this part of life. I have to feel guilty if I smile or if I enjoy something. You can say “Adam would want you to be happy” all you want … it doesn’t make it real for me. Not now.

I talked to Adam out loud today. 17 years. That’s all I got with him in this life. I lived 30 years before him. Maybe I will live 30 years after him. Somewhere in the middle was the gold. I talked about our wedding. We made it everything we wanted it to be. Three years later we used a trip to France for his sister’s wedding for our honeymoon.

I really wanted to bring more humor into this blog but I’m having some trouble finding it. I told Adam today I lost those 10 pounds I always wanted to … and then some … actually about 23 since Sept. 1. He would have been mad at me, saying “this is not the way to lose weight. You have to eat.” I really am trying.

In good news, Adam, we finally got a Keurig. Brenna brought it over. I told her she just didn’t want to feel guilty about the landfill. Not surprisingly, I don’t give a fuck about the landfills or the health of the Earth right now; I just want an easy cup of coffee. I then felt guilt about putting away our coffee pot … the pot you made such good coffee in. This is the irrationality of early grief.

I have to walk the dog. I have to go back to work. I have to eat. All I want to do is live the next minute.

Bad Day

familyIt’s 2 p.m. on a Monday, and I’m still in bed. Pajamas on. No food eaten. Reruns of Law & Order: SVU on the TV. No shower. I did have a cup of coffee (the aforementioned last Starbucks Via in the house. I could use another cup but I’m not up to trying all your water to scoop ratio ideas yet).

Bixby is on the bed now. I think he was ignoring me most of the morning. I’m pretty sure I traumatized him last night screaming and crying. I wanted to be alone. Wasn’t sure I was ready for a long sleepless night.

I never imagined I would have experienced so much grief by this age in my life. I’ve lost so many pets. I look at the picture above, the glorious picture at Aly and Peter’s wedding, and am sad at the losses. Cousin Grace, cousin Cheryl, Aunt Marge, my dad, Uncle Jim, now Adam. How happy we all were then.

This was before we had any idea Adam’s body wasn’t going to be friends with alcohol. We enjoyed dancing, drinking, eating, traveling, so much stuff. I’ve spent a million minutes wondering why Adam? Why, with all the drinking going on in my circle of friends, was he the one cursed with the delicate liver? Science has yet to answer that question. Just like a man like my dad could smoke three packs a day for 40 years and not get lung cancer.

There was an answer for Adam… stop drinking. He tried. He tried so hard. He fought every day, and every day he drank added to his anxiety, which added to depression. He wasn’t sharing with anyone. I used to beg him to call family, friends, anyone. Just to do something beyond me.

Adam being defined by his disease is what scared him. I share his struggle because I want to help others. But he was NOT Adam the alcoholic. He was Adam the designer. Adam the creative thinker. Adam the gentle soul. Adam the caring friend, son, uncle and brother. Adam the thoughtful husband, who would create homemade cards to cheer me up. Adam the science fiction lover. Adam the dancer. Adam the musician. Adam the snowboarder. Adam the goof. Adam the joker. Adam the lover. Adam the fighter.

I think he was finally looking forward to conquering the disease. He was thinking of some day helping others.

Fuck, I need more coffee.

Da Bix

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Our first pic with Bixby. Adam quoted Monty Python when posting this “She smells a bit but has a heart of gold.” Bix smelled of the medication from an ear infection. I notice on the mantle in this picture are the ashes of our beloved family members Bailey, Meka and Patches.

Bixby has not always been in our lives. Our first dog was Bailey, a boxer/pit bull we picked up back in about 2003 outside of Petco. We had dog fever. We had been looking for a dog but had ignored Bailey on the websites because she was listed as a pit. Adam called me at a football game to say he had found the perfect dog. He convinced me to get over my irrational fear of pit bulls. One of the best decisions ever. Bailey was our baby. She wasn’t the perfect dog … we had to learn to be better owners due to her often-unpredictable behavior. But we are glad we learned.

Meka came into our lives two years later. Meka was Bailey’s best friend, and when Steve had to move away and didn’t think Meka would fit in an apartment, we gladly took him in. Bailey and Meka lived happily until Meka passed in 2011. Bailey died in October 2014, and our hearts were broken. It was one of the few times I had seen Adam cry. We held each other for awhile, celebrated her life with friends.

I wanted another dog a few months later. We had Chance the cat, but I wanted to give another dog the chance at a great life. Adam wasn’t sure, but I joked if he didn’t get me a dog I would want a baby. Ha ha! On Jan. 4, 2015, we welcomed Bixby into our lives from OutPaws Rescue in Denver.

Bixby became The Bix. Da Bix. The light of our lives. He is the perfect dog. He is struggling with anxiety now with the changes in the house, but every day he is calmer.

As Adam struggled with his depression and anxiety over the last year or so, Bixby was a solace. He napped with the Bix. He talked to the Bix about his pain. I heard him once when he was out of it and didn’t know I was in the room (had he been drinking? was it the Xanax? was it brain confusion from his disease? I don’t know).

bixby-couchWhen we knew Adam was not going to make it, I begged the docs to allow someone to bring Bixby to Denver. I thank Dr. Abigail Lara and Stephanie the nurse from the bottom of my heart for agreeing to look the other way and sneaking Bixby up the service elevator. I cannot thank Mike Carsten enough for leaving home immediately to pick him up and bring him.

Later, Adam said I was quite sneaky for getting Bixby in. He smiled. Bixby sniffed him goodbye.

Bixby is why I need to make it. I can’t let Adam down.