Eight years of sobriety isn't going to change the fact I am still going to die an alcoholic death. The irony is hysterical!
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Living with terminal cirrhosis (end-stage liver disease) is not something I would wish on my worst enemy, not that I have any of those, but I just wouldn’t. It is a life of ultimate balance. Being careful to understand its existence within, but also not to be taken too seriously either. After all, I am going to die an alcoholic even though I have been sober for eight years.
I blend humor and awkwardness with the inevitable anger, humility, and vulnerability that comes with a terminal illness. This approach helps me overcome the mental detriment of not being able to be everywhere I want to be, and not do whatever I want to do. Humour tends to lighten the load of carrying around all the weight a stigmatized terminal illness entails.
I used to mix Jack Daniels and Coke to get high and feel better. Today, I mix drinks that consist of Kool-Aid and prescription laxatives. Because I cannot go without them, and going makes me feel better. This used to be awkward to talk about, but not anymore. What is awkward is telling people I am going to die an alcoholic
I am going to die an alcoholic: let’s talk about it
Awkwardness isn’t really awkward anymore; well, at least, not so much for me. Sometimes it is awkward for the other person I am chatting with.
Some people ask me, “how’s your liver?” to which I jovially reply, “well, it’s three-fourths dead, but it’s still there!” or subtly respond, “It’s patiently awaiting its replacement.”
“Why don’t you work?” a man asks, after having just listened to my story of cirrhosis in a gymnasium full of people. I politely answer, “did you not just hear my story?”
Another will say, “you don’t look sick,” as if I’m lying.
Even my own doctor’s personal assistant looked me straight in the eye once to tell me “ascites isn’t painful.”
I actually cannot believe that anyone would say that if they saw me with ascites. It had to be painful for them just to look at me and I was the one with the swollen abdominal cavity!
Ascites offers up great humor and awkwardness for the person not familiar with the condition.
Did you know ascites basically makes a person look like she/he is pregnant, and it is excruciatingly painful? It’s when fluid cannot pass through the body to be excreted as it should, and so it builds up in the abdomen. When people have asked me how far along I am, I just smile and say, “I’m not pregnant, I’m just sick,” and then walk away. Perhaps an explanation is warranted, but perhaps not.
“I'm not pregnant, I'm just sick”
Sometimes it appalls me when people, especially my doctors, say things they have no personal experience with. But I have learned that with anger comes humility. I have had a few people tell me just how inspiring I am to them because they have seen me out walking in the neighborhood, and they know I’m sick but don’t know why or how I got that way.
When they finally ask, and I tell them, their response is always this: “oh, so you did this to yourself.” They scoff at me, walk away, never to speak to me again.
The emotions of anger and humiliation encourage me to ask my Higher Power for the humility to understand that not everyone can discern or accept the disease of alcoholism. I used to be ashamed of it, but have come to realize internalizing my shame does not help anyone or myself. I must instead rise above the shame with vulnerability and courage. And that is the only thing which frees me to be me, the only me I know how to be.
Standing up in front of a room full of people to tell them the most vulnerable parts of my life as an alcoholic living with liver disease used to be the scariest thing I believed anyone could ever ask me to do. I wondered what folks would think of me.
Would I be deemed the “liver girl” forever?
How could I tell a room full of strangers that I drank myself virtually to death?
How was I supposed to tell them that I am terminal?
That I am going to die an alcoholic?
That I did this to myself?
These are hard things to think about. But, as Glennon Doyle says, “We can do hard things.” And so I did.
Shaking in my size sevens the first time I told my story publicly would turn out to be such a revelation. I prepared so much and even took notes. Right before I was “to go on,” I got on my knees and asked God to speak through me so that someone may hear something that they needed to hear.
Afterward, more than a few peoples’ hearts were opened as they spoke to me with tears in their eyes. But, I did not say one word that was practiced; not one word that was on that note sheet; not one joke that I had come up with and planned. It all came out the way He wanted it to, even the jokes, and from then on out, I never practiced or took notes again; I just prayed.
“Eight years of sobriety isn't going to change the fact I am still going to die an alcoholic death. The irony is hysterical! ”
There are no stupid questions: just insensitive ones
I try to flow with the fact that there is no such thing as a stupid question, especially when it comes to being differently-abled because some people just don’t know.
Someone once asked me why I don’t just lay around on the couch all day. “Why do you go to meetings? Why did you even stop drinking when you knew you were going to die in less than three months?”
The fact that I am still alive and breathing eight years later should be answer enough.
I was once asked of a lady to tell some of my stories as she had never heard them before. When I started to talk, she stopped me dead in my tracks and asked if I was dying. I suppose it was written all over my face because as she walked away, she said, “I’m trying to get sober, and I can’t have anyone dying on me right now!” Well, there’s an eye-opener.
When my friends ask questions like why I walk so much, or why I take all of those medications, I cannot help but answer their queries with true, but hilarious, attributes. For example, in response to being asked about bowel movements, I explained to my buddy the whole biological aspect of peristalsis. The entire thing, from food in, to food out, and how moving the body helps the process along. He got an earful!
To the question regarding my medications, I simply go through them and explain how each and every one affects whichever part of the body it is intended for. No one understands, as I once didn’t either, what it all means even when I speak in layman’s terms. It gets comical. It also gets scary.
I was telling a friend one afternoon about my medications when he was visiting. He got teary-eyed, and hugged me tightly three times before he left; he was only there for ten minutes. I told him later that night that he needn’t worry because those meds are keeping me alive, or at least keeping my body more or less functioning (for now at least). I found out quickly that it is not my duty to ask anyone not to worry; for, I only waste my breath.
“Did the doctors really give you three months to live?! Did they?!”
The only thing I can do is forgive my family
I don’t talk about it my family much, but I have a twin sister who refuses to speak to me. The last time I heard her voice was eight years ago when she called my hospital room to find out if what she heard was actually true.
“Did the doctors really give you three months to live?! Did they?!”
When I said yes, her response was more than chilling. “Well, you better be dying in that hospital!” She hung up, and I never heard from her again although I tried several times to reach out. The biologics (parents) share her sentiments as well. I have tried desperately to reconnect with them but to no avail. However, what I have come to terms with is this: I cannot make anyone love me no matter how hard I try. I cannot make anyone talk to me, or see me. The only thing I can do is forgive. Yes, I think it’s about forgiveness, even if they don’t love me anymore. Wow, what a hard thought to think, and a tough sentence to type.
Living with liver cirrhosis definitely has its moments that range from hilariously funny and ridiculously audacious, to emotionally painstaking and physically excruciating. But the biggest part of it all is owning enough humility to accept the fact it was caused by alcoholism. The best part: attempting to give the world, one humorous lesson at a time, a new perspective on life’s untimely timeline.
Eight years of sobriety isn’t going to change the fact I am still going to die an alcoholic death. The irony is hysterical!