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.

I Crashed. But Adam is Still Talking.

screen-shot-2017-02-26-at-11-47-28-amI’ve crashed since my family and friends from across the country left. Yesterday I ended up in full “November grief” mode. I ate a can of bean dip (thanks, Karen!), ate au gratin potatoes for dinner (the whole box, Adam would have said “that’s a great dinner!”), and watched movies. I slept in even though I didn’t sleep. I took a nap. I went to bed early. I didn’t pay my bills this week (please forgive me, I know I owe you, friends). I didn’t check my email, didn’t check in on my friends online who are hurting. I cried. I have a friend who lost her mother (and her dad lost his wife), and somewhere out there Bill Paxton’s wife is having her version of my November 2016.

So, I’m posting the below  letter because my head is too full to speak. Adam has not given me permission to post this, but I do know if he thought it could help anyone, he would be OK with it. He wrote this in rehab. He was trying. He was getting it. This is Adam’s gift to all of you who are struggling, whether it’s with addiction or loneliness or mental illness. He was trying. We can, too.

Also, I edited for a couple spelling errors, because…it’s me.

Dear Alcohol,

When we first met, I really didn’t care for you much. Even though my friends all thought you were great, I still felt that we were incompatible, but you stuck with me anyway and eventually won me over. 

We’ve had so many good times together. You helped me meet people, and even showed me that I had a sense of humor. However, the longer we knew each other, you became more pushy…and instead of helping me out, you began to urge me to do more obnoxious things, and sometimes pushed so hard that I wouldn’t even remember our fun time the next day.

Then you took it way too far. I thought you were my friend when all the while you were killing me from the inside out. Of course, I couldn’t see this…you kept your facade of ‘best friend,’ the one who makes me happy and more interesting.

So I had to break away from you five years ago. I thought that this distance would make it possible to remain friends. I just wasn’t going to let you bully me around anymore. And you played nice for a while. But then you started to sneak up on me and convince me to hang out for just a while longer until I stopped caring when you would leave.

Once you had your toe-hold back, you started up again with more fervor than ever. You didn’t even care about helping me have fun. You just concentrated on destroying me. I even knew you were doing it, but I didn’t have the energy to fight you off. You let me shrink away from everything I loved, and pushed me even more violently into an isolated, dark closet… telling me there was no way to leave, but that you would stick with me and it would be OK. I now know that you are a liar. You are insidious, cruel and poisonous and it’s time for you to go. I am so disappointed in you…and you made me hate myself, then stole all of my most prized possessions and sold them for your own profit. Now I have to track them all back down and try to buy them back (for a loss, no less).

There may have been a time when we could have reconciled, but you have burned that bridge, and I am paying for it.

I have changed the locks, and I will never respond to you again. I’m walking away now. I have real problems to solve now, and you caused most of them. Your ‘help’ was a ‘hindrance’ and I don’t want you around anymore. Goodbye.

Regards,
Your latest victim

Rehab Diaries

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Adam’s proudest moment.

The perils of this numb slog are unavoidable and deadly.

Today, I decide to take a stab at “things around the house.” By that, I mean “Adam’s office.” I took pictures of it. I wanted a remembrance of what it was, even though it’s nothing without Adam in it.

First I went through the trash and recycling bin in his office … just to make sure. Just to make sure there wasn’t one scrap of paper that I couldn’t part with. I pulled stuff off the floor; packed programming and design books into a box for the Arc — maybe some young artist or tech person will benefit. I recycled a hundred empty pads of paper, read every scrap of note with his writing on it, weighing the decision for each one: keep or let it go.

I recycled sign-in sheets from classes he taught at PPCC; threw away anything related to the horrible last job he held. I emptied the bookcase, cleaned it, moved it to the basement, then vacuumed.

I cried the whole time. I talked to Adam, asking for his forgiveness; asking him to understand. Of course he didn’t hear me. He’s gone.

Then I came across his notebook from rehab. I knew it was there somewhere, and I have avoided it. It might now be the most precious thing in this house (shit, am I going to need to carry that with me in the backpack everywhere now?) It was filled with the eloquent journal entries of a man trying to find himself; trying to deal with depression and a lack of self-worth. A man who realized alcohol and depression took his art and his music from him. That he wasn’t the same person he was.

I came to a page that had a number of nouns listed on it … an exercise of sorts. He was supposed to write something small about each. This is what I saw:

Relationship: Challenging … but worth it.

And I feel terrible now, that I made things challenging. I can’t even focus on the “worth it” part because all I see is the “challenging” part. I don’t want to admit that even I felt the last couple of years were challenging as he fell deeper into depression and struggled more with anxiety. That I became a different person as I lived in constant dread of him drinking.

I read his words about how my “honey-do” lists or “boundaries I set” were stressing him out more. We were failing in communication there. After all those years of having this perfect life, we were breaking down in communication. I thought I was helping focus him, helping  show him little things he could do. I knew he was suffering from depression, wasn’t getting help, and I know the enormity of feeling like you couldn’t do anything. I thought I was nudging him. Instead I was stressing.

So I fall right back into wondering what I did wrong; how responsible I was for everything. I’m ignoring everything else he wrote … about the devastation of being laid off twice, about his fear of failure with his business. I gave him every encouragement I could think of … I would support him with anything he wanted to do, I was with him… probably neither one of use realized exactly how much the alcohol was affecting him.

He was ready to conquer alcohol … his writings showed it. But the real world was more than he could handle.

If you read this, and if he ever told you that he loved me and he cared, please tell me. Because I feel so responsible for everything again right now.

I told him once during the last year that it was OK, that if it was me that was causing the stress, I would go, because I wanted him to live more than I wanted anything else, even if that meant we were apart. He told me something like “absolutely not. It’s not you, you are the one thing it’s definitely not.”

But I continue to focus too much on the negative right now.

Fuck.

 

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?

The Catching of Breath

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Uncle Adam and Coco … 2009? … at the Mango Tree restaurant in Cocoa Beach, Florida. Adam really knew how to eat corn… not leaving a kernel by the time he was done. He was efficient at it, and mocked my poor non-Nebraska corn-eating haphazard style.

Bixby knows.

He knows it’s different this time. When Adam was gone in April and May, Bix slept on the other side of the bed. Now, he’s jammed up next to me at all times. It’s like he knows it’s not temporary anymore, and he stays close for reassurance that all will be well.

Or maybe he’s just cold.

I’m in this stage now where I can go a couple of hours feeling OK. OK does not mean good. It means I can go for a few hours with Adam as a backdrop to my life, always peeking around the corner. But then, my breath catches, my stomach aches and it’s that debilitating fear. That fear you might get if you think to hard about the fact that you ARE going to die.

That fear is closer now that Adam has gone. That I’ve held two people now and watched them leave me. Dad and Adam. Two of the loves of my life. I see death now, but I have to change the word. It’s not fear anymore. It’s just there. It’s closer than ever. But then it’s so far. So far when you factor in grief.

I’m getting a better grip on what I can and can’t handle. I know there are times I can join my friends for something, and times when I know it’s better to just stay home. These hours alone are precious now. They are the times when I can fully envelop myself in Adam’s memory. Sometimes, this leads to tears, but not always anymore. The need to grieve alone can be overwhelming at times. I feel like I sometimes can’t get out of a crowd quickly enough. Then there are times that I am out of the crowd too soon.

I’m confusing. I know. It’s grief.

I’m focusing hard on Al-Anon right now. I’m doing it backward without a foundation as I no longer have an active alcoholic in my life. I’ve had confusion being stuck on step one: that I am powerless over alcohol, and thus in an Al-Anon way, I was powerless to do anything about Adam’s choices. The confusion came because there is also an Al-Anon list of Do’s and Don’ts that was discussed. If there are “do’s” and there are “don’ts,” doesn’t that mean that I had some sort of power? If I “did” the “don’t,” did I screw up and contribute to Adam’s drinking?

Someone finally tried harder to explain what Al-Anon is. It’s not about Adam, or whoever is drinking in your life. It’s about “you.” Doing the “do’s” and not doing the “don’ts” is precisely because you don’t have power over the drinker. You are a hamster on a wheel, causing anxiety only to yourself, spending your life focusing on someone else as if your life was less important. Maybe there is someone out there who can help me focus and understand even more … do I have this correct? I really just am stuck on the fact that I was powerless. I feel like I want to have all the guilt for life because it makes more sense. It’s easier to understand a concrete concept like “I did this because I nagged him” than “addiction is a mystery we are all still working on.”

And that’s where I’m also stuck. My life was not any more or less important than Adam’s. I would have taken the risk for my own life, to give part of my liver for him. I would have continued to live in a state of anxiety for him. I wanted to run away from the anxiety; I told him this. But I didn’t. There are still times I wish it was the other way around. That I was nonexistent and he was here for his family. I feel useless to my family. I feel like a burden of sadness.

I’m sorry I’m so messed up, that I put my grief out there. Know that I won’t feel bad if you stop reading. Grief is definitely uncomfortable for people.

You know what’s not uncomfortable? These black jeans. I’m still wearing them … every fucking day. I change my shirt and sometimes the sweatshirt. Sometimes it’s the same soft Dane hockey sweatshirt and black jeans three times in a row.

At least I have washed them…… once.

 

 

The Loss of the Middle

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Bixby at Sondermann today

I think a lot lately about one of Richard Bach’s books. I can’t remember if it was Bridge Across Forever or not. But the female protagonist talks about how the male always wants to stay in the “beginning” of the relationship. That many are like that; they move from person to person to keep finding the spark and excitement of a beginning. And like a symphony, they never reach the beautiful middle of the symphony.

I am a middle person. I think Adam was, too. Those early days/months, maybe even years of “beginning passion” that you live in for awhile, are not what I hold dear about our life together. They are fun, sure, but they are distant memories when it comes to Adam because it was the least important time in our lives. It’s like the quote I mentioned in a previous blog—how true love is not gazing into each other’s eyes, but looking in the same direction. It’s the partnership that I miss. People talk about “keeping the romance” in the relationship. Whatever. The romance is in the everyday things; it’s wherever you want to look.

I remember our first Super Bowl together. We got a ton of junk food and spent it at his apartment in the attic on Wood Avenue. I ate too much and got that sick feeling and had to use the bathroom…and I was in there for a while. I was mortified as this was only three months into our relationship and of course I didn’t poop! Adam came to check on me. Even more mortified.

That’s not romance to me, pretending you don’t poop. You know what is? Leaving the bathroom and telling Adam, “You should have seen the size of the poop I just took.” Then there’s laughter and Adam saying “I love you so much.” Love was laughing at farts … because if you don’t think farts are funny, who are you? Love was laughing at bathroom mishaps (oh like you have never had one as an adult!). I’m probably shocking someone right now. Love was one of us going to sleep in the other room because the other was snoring and not being offended.

The kisses we shared in the 17th year of our relationship didn’t have the same fire they did in the first year. But they were better. The one millionth time he said he loved me was better than the first time.

Romance was the fact that we had no jealously between us. We weren’t worried about always reassuring each other. He would often go out with friends downtown without me. That was fine with me. I would go to events for nine days with figure skating and we’d talk maybe three times. We didn’t need to always speak. I had a favorite work-husband … you know who you are, Greg … and there wasn’t any need to worry that I went to lunch every day with him. Adam and I were confident in our love.

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The lonely road ahead, with a dog on the side

I wasn’t perfect in our relationship. Adam didn’t do well with sarcasm, I failed to realize that, and I hurt him a lot with what I thought was humor. I had a tendency to shut down when I was angry. But I also wasn’t afraid to talk about anything.

The reason I know Adam had a disease was because he lived life fearlessly … except when it came to alcohol. We didn’t lie to each other, except he couldn’t tell me the truth about alcohol. He was honest to his core, but this disease destroyed him.

I don’t even recognize myself anymore. I took the dog to Sondermann Park, picked up lunch, and then realized I hadn’t looked in the mirror all day. I have no idea what I must look like.

I made it until 3 p.m. before my first cry today. The emptiness is so real. Walking Bix was hard; it always is because Adam and I would have some of our best discussions on walks. Sondermann had become our “go-to” dog walk. It wasn’t really a hike, just beautiful and uncrowded so we could let Bix run off leash. Adam loved Sondermann; I’ve found so many pics he took of Bix at the park on his phone. In fact, his phone is filled with dozens of photos of Bix and Chance over the last year. I didn’t realize how much he loved taking photos of the animals.

The dishes have piled up. The paperwork is scattered. I haven’t unpacked since last weekend. There is no motivation, excitement or anything. I did get a new audio book; another post-apocalyptic nightmare book where people just survive. Usually they try to survive for revenge. I don’t even have revenge to look forward to. I want to get drunk but the thought of alcohol makes me ill.

Fuck. This really is hell.

 

 

Grief Revelations

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This photo has nothing to do with the blog. This is us with Daniel Logan, who played young Boba Fett in the prequels. We got his signature on our autograph poster and he was so awesome!

Over the last few days, I have a some certain revelations and steps in my grief.

I’ve read about four books on grief since Adam died. All of them by women, a couple more story-like and based on personal experience, a couple that have been a combination of stories and tenets/steps. What I realized is that I was actually becoming confused by the consortium of stories. Was I doing this right? Was I following a good path to steer myself from “complicated grief” (yes, this is a thing…)? Am I spending too much time in one stage?

I know the only right way to grieve is my way, but these books can be confusing as you judge yourself against others with different experiences. I spoke to my therapist about this, and she told me that she was advised not to recommend grief books to grievers for about six months. The reasoning? Exactly what I was experiencing…confusion about wondering what is right and wrong. Six months or so out, she said, it’s easier for a griever to get a handle on where you are.

Thus, I decided not to read the next book on the Kindle, and at the airport, I picked up an LCD book … a Lowest Common Denominator book … which is my acronym for any mass market paperback (yes, I’m being judgmental here). I picked up “Inferno” by Dan Brown. Aside: I read the Da Vinci Code during the week up to my wedding. I was exiled to the bedroom often to rest because I was so sick I couldn’t speak.

Anyway, about 100 pages in, the writer describes Florence, Italy, in great detail, and specifically Boboli Gardens. I immediately thought “I would like to go there.” The next immediate thought is the resounding sadness that I had actually been thinking of going there with Adam. I had to rearrange those thoughts in my head. My next thought was “Well, I guess I’ll never go there, then.” I couldn’t even entertain the thought of going alone or with someone else. And … cue the tears on an airplane again.

Grief is surprising at every turn. You are hit hard with reminders of what is not to be, even though every other minute you already know your life has changed irrevocably. It’s like you know, but you still keep forgetting.

That’s two things. The third is more personal. I’m in Central City, Neb., watching football (of course) after the celebration of life today (I’ll talk about that in the next post). But last night, around the table, we talked about Adam, addiction and his illness. His dad told me that while Adam was in the Texas hospital last April, he was flat out told “If you drink one drop again, you might as well call hospice right now.”

I did not know this. This was one of my own personal bits of anguished guilt and regret, thinking that I didn’t push doctors hard enough to tell him he could never drink. But someone did, and he drank anyway.

This gave me some sense of peace. It’s hard to explain why. Maybe it’s because it seems to be greater confirmation of the fact that he had an illness that affected his ability to make rational decisions. It wasn’t about loving alcohol more than he loved me… or loving alcohol more than he loved life … but whatever was going on, he struggled with making a completely rational decision not to drink… and there is science behind it. It’s not just willpower.

From the recent Surgeon General’s report on addiction:

… substance use disorders are said to involve compromised self-control. It is not a complete loss of autonomy—addicted individuals are still accountable for their actions—but they are much less able to override the powerful drive to seek relief from withdrawal provided by alcohol or drugs. At every turn, people with addictions who try to quit find their resolve challenged. Even if they can resist drug or alcohol use for a while, at some point the constant craving triggered by the many cues in their life may erode their resolve, resulting in a return to substance use, or relapse…

I guess my thought is, I’m still trying to work my way around the guilt I feel. Even in the above paragraph, there are phrases that trigger my guilt … Adam had triggers … they were our house, our city, our friends, our routines. We probably would have needed to uproot our entire lives to help conquer this, and we were talking about it. As I’ve said, we just ran out of time.

My therapist asked why I was continuing my sobriety. I first said “it would dishonor him.” She asked me “how would it dishonor him?”

My answer finally was…”Having a drink means I no longer have to be/need to be/want to be sober. I no longer have to adjust my life willingly for the person I love. Drinking means admitting Adam is gone. That I have no one to support anymore.”

 

Drinking means going on with my life. Going on without Adam.

I guess I’m not there yet.