The Terrible Beauty of Alcohol During a Crisis

There are kitchenettes on the oncology floor at Children’s Hospital in Boston. They’re stocked with mini cereal boxes, hoodsies, applesauce, juice, bread, and packets of peanut butter and jelly. Often parents have quick conversations about counts and cancer and the leftover McDonald’s in the refrigerator that we all share. I can’t remember the names of these parents but I always remember what kind of cancer their kid has. To me, they’re brain tumor mom, Wilms sarcoma dad, and leukemia mom who refers to her daughter’s cancer as “the garden variety.” I Google what that means because I’m not sure.

One day in the kitchenette, I meet a woman from New Hampshire. She’s in her forties with a thin frame and a “Live Free or Die” sweatshirt with mountains. She tells me that her middle school son has a form of leukemia. She’s friendly, smiles a lot, and talks fast. I stare at the choices of cereal while she makes her son a peanut butter sandwich. “He doesn’t eat anything so this is a waste of time,” she says. She’s waiting for a text from her friend who’s meeting her in the lobby. “I should probably be embarrassed to tell you this…,” she pauses. “Every night my best friend drives from home and brings me a six-pack of beer. It’s bad, I know.” Her tone is confessional. But I’m not thinking that it’s bad. I’m thinking Thank goodness I’m not the only one. Her honesty makes me feel better about filling empty water bottles with vodka when Emily is admitted to the hospital. “I mean…how else would you be able to survive in this hell hole?” she asks. Amen.

All day I look forward to drinking vodka. Through the beeping machines, doctor visits, medicine attempts, and reactions to this drug or that, I comfort myself that at the end of it there will be vodka. I justify drinking as a reward for making it through the day. I tell myself I will not be able to “do cancer” without help. Vodka helps. It allows me to fall asleep. It allows me to breathe without thinking about it. It allows me to read books to Emily at night and enjoy it. It signals to my brain that it’s the end of the day. It shuts down the part of my brain that runs wild with thoughts of chemo, line infections, blood transfusions, and counts. It makes me feel more like me, which I know isn’t real but I don’t care because it feels real. I wait until the nurses change shifts at 7 p.m. and use their change of shift as my change of shift. I transition from a stressed-out cancer mom to a relaxed loving mom. Most of the time these two operate independently. I’m careful to drink just enough to feel good and not too much to feel bad. A good buzz but not drunk. I have work the next day. Hospital mom work.

Once in a while, I think about what someone from the normal world might say if they knew that every time I left for the hospital I packed water bottles filled with vodka. Her kid has cancer and she’s bringing vodka to the hospital? The thought is enough to keep my way of coping a secret. I watch how other parents cope in the hospital. Some gain weight. Some lose weight. Some stay on their phones all day. Some play solitaire. Some shop online. Some walk the hallway. Some Google their kid’s illness until they find research that allows them to sleep at night. I judge none of them. Because I understand. I drink vodka.

As I watch the moms and dads on the pediatric oncology floor, I feel guilt for the times I judged others during their time of crisis. Their divorce, their affair, their bankruptcy. I judged them as if I knew what they were going through. I would never…drink, gamble, shop, eat or work in excess. I feel foolish. Foolish for judging them and their way of coping during their crisis. It’s humbling. Cancer cures me of judging.

I don’t want to need vodka every day. I want to be able to be present without it. I want to be able to snuggle with Emily at night and rub her back without taking little sips of what looks like diet coke. But the reality of what’s happening is too much to process. She’s so skinny that her bones pop out of her spine. And during her first transplant, the chemo she’s given is so toxic that I have to wear a paper gown and gloves so it can’t seep from her skin to mine. On New Year’s Day, she needs emergency surgery to drain seven ounces of liquid from her heart. It seems something big happens every day. Vodka helps me overlook what I can’t when I am sober. It blurs what is very clear. Emily has cancer. She could die. It gives me fake strength and false assurances. I know they are fake and false. But I don’t care. Because when I am sober I have no strength and painful assurances that make me unable to breathe. Drinking fixes that. Except on big days. On those days, I have a tendency to drink more because there is more pain. Drinking more makes everything more.

Emily’s scheduled to be in the hospital for a round of chemo on the fourth of July. I’m devastated and angry long before she’s admitted for treatment. The 4th is like Christmas only better in my family. My parents, three siblings and their families, and friends gather for a day that we look forward to all year. My dad gets up in the middle of the night and puts chairs out for the town parade in the morning. We have lunch at my house. We go to the beach. We have a cookout with sparklers. Everyone gets along. It’s just about perfect. When Emily’s admitted a few days before the 4th, I bring my bad attitude and plastic vodka bottle with me. I remind myself that I am helping Emily get better. That we are exactly where we are supposed to be. That we will be at the parade next year. That next year will be the best 4th ever! But then I immediately think We’re not supposed to be here! We are supposed to be picking out red white and blue shirts and making Oreo bars! I want to change where we are and what we’re doing. I want to do something to fix it. But I can’t.

The nurses on the floor try to make the weekend more festive by handing out red white and blue beads and small flags. I can find nothing festive about a day spent in the hospital when everyone else is at the parade or the beach and we’re supposed to be with them. I feel guilty for my resentment towards Emily’s cancer. I’m a horrible caregiver. I’m an even worse mother. The good mothers are putting on beads and making flag pictures to hang on the windows.

We share a double room with a girl who’s Emily’s age and has leukemia. Her mother is sweet and friendly. She apologizes for everything. None of which she has any control over. She asks if I want to join her on the rooftop to see the fireworks that night. She tells me it’s one of the best places in the city to see them. Part of me wants to go because it seems celebratory and possibly fun. But a bigger part of me wants to be miserable, so I decline. I tell her that I don’t want to leave Emily alone because she had a rough day. That she needs me and I don’t feel comfortable leaving her. Part lie. Part truth. I order Bertucci’s, take a shower, and pull out my water bottle of vodka while we read. I don’t dilute it. I take sips from the bottle. I’m aware that it’s risky but the voices in my head scream that they don’t care. The first few sips allow me to accept that we’re in the hospital on the 4th. The next few sips make me question What was I so upset about? So I drink a little more. And more. And then pass out next to Emily in her bed with the tv on.

The next morning I’m dizzy and nauseous. We’re told that as soon as Emily’s labs come back and look good that we will be able to go. The normally lengthy and tedious discharge routine feels uncharacteristically efficient. I’m not sure how I’m going to drive home. I drink water and eat pita chips. I pop four ibuprofen. I lay next to Emily trying to muster the will to get up and put our suitcases in the car. My head hurts. I’m so annoyed at myself. I almost throw up on the way home. I roll down the windows for fresh air but Emily yells at me that she can’t hear Sleeping Beauty. My parents are at the house when we get home. I tell them nothing. I go for a walk. I don’t ponder drinking. I ponder cancer. I wonder how long it’s going to be a part of our lives. And how long I will feel alone. I wonder if I’ll feel this desperate forever. After my awful day, and all of my thinking, I drink again that night because that’s what I do. But this time I drink just enough to make all of my ponderings go away so I can fall asleep.

My plan is that I will stop drinking when Emily finishes treatment. It will be easier to stop drinking because everything will be easier. With everything easier, I will not need to cope. I will be happy and free from cancer. Our lives will be almost perfect. But this does not happen, so my plan falls apart. Our lives after cancer are harder. I have anxiety that her cancer will come back. I want to be doing something to keep the cancer away but I’m told that there’s nothing to do. Just wait. The days we wait for her scan results take years off of my life. The projection of what her life will be like makes me angry. Her physical therapy, speech therapy, hearing aids, damaged kidneys, leg braces, medicines, IEP concerns, and social well being make me weak. I need to be strong to stop drinking, so I wait.

When I’m home I don’t add diet coke to my vodka. I prefer to consume it straight up. I keep a bottle of vodka in the freezer and pour it in a glass that the girls use for juice. My vodka doesn’t need a disguise when I’m home. Disguises are for bad guys. Vodka is my good guy. One night I notice the amount of vodka in the glass. It’s a lot. “You build up a tolerance,” Shane says. “Don’t feel bad about it.” But I do feel bad about it. My god, Am I an alcoholic? I run through a mental checklist of what makes an alcoholic. You need it to get through life, it’s very important to you, you can’t stop, it’s in excess. Check to all of them. It was easy to ignore the checklist when Emily was sick because she had cancer and it was justified. But now she doesn’t have cancer so it’s harder to justify. There will never be a night for the rest of my life that I don’t need to drink. The reality of this is sobering. But not enough to make me change.

I see memes of moms who drink wine every night, so I justify my drinking. They drink and they didn’t even have a kid with cancer. I feel some shame that hard liquor is my drink of choice. There’s something more virtuous about drinking wine. More social. Less desperate. I don’t talk about vodka to my best friend, my therapist, or anyone else because it is non-negotiable and I’m embarrassed that I continue to self medicate. They wouldn’t understand anyway.

Vodka helps me cope with two things that I have no control over. Cancer and my thoughts. It has magical powers that make both go away while I’m under its spell. It’s that good. I’m convinced that nothing can make me feel better than vodka. Not therapy, socializing or meditating. But there is something that makes me feel better — something other than vodka — I just can’t see it every day.

Time makes me feel better. Every minute, every day, every year helps me feel a little bit better. It’s not measurable day to day but it adds up month to month and year to year. The gift of time allows me to resist thinking that Emily has relapsed every time something on her body hurts. I remind myself that Sometimes kids get headaches and it’s not a brain tumor. I react. Not overreact. This is big for me and a gift of time. I stop believing that it’s up to me whether Emily lives or dies. That I’m not poisoning her if I feed her a pepper that isn’t organic. Time helps me realize two things: I want to protect Emily from pain. I cannot protect Emily from pain. They’re both true. It’s terrifying and oddly liberating. But I continue to drink because the thoughts and the cancer are still there.

One day I get sick. Gradually I get sicker and sicker. My stomach hurts. I have headaches. I can’t get enough sleep or I can’t sleep at all. My face is puffy. I become frustrated at doctors who tell me I’m fine. I cry in my room. Every night I debate whether or not I should drink because I know it’s not helping me heal. But I also know that the thought of not drinking makes me panic. For months I continue this nightly battle of should I or shouldn’t I? But on a particular night. Near Christmas. After taking four ibuprofen for a headache I’ve had for days, I make the decision. I am not drinking tonight. The voice in my head that usually cheers for booze whispers that I need to be kind to my body. Drinking every night is not kind. I am furious at this voice. How dare she? And yet I know she is right. In the shower, I am cranky. When I go downstairs I’m even crankier. This is it? I just eat dinner now? Nothing to look forward to? I pacify the racing uncertainty by reminding myself that it’s not forever it’s just one night. I fall asleep with no vodka. I’m shocked. And hopeful.

I remind myself that it takes two weeks to break a habit. So for two weeks, I do not drink. I am miserable. The best, most exciting part of my day has been stolen. I want it back. I try to make up for the thing that’s been there for me every night for eight years. I eat lots of chocolate. I read. I go to bed early because I’m cranky and don’t want to be around myself. Physically I don’t feel that much better. I consider that maybe drinking didn’t hurt my health. That I’m denying myself a pleasure that I could be enjoying. But then I pause. I don’t want to undo my hard work. I’m proud of myself for doing something that I never thought I could never do. Some people train for marathons. I stop drinking.

A month passes. And then another. I don’t drink one night. It’s anticlimactic. Surely not drinking will be a bigger deal than this. I think that I will be elevated in status. Or that I will be a better person. More virtuous. More in touch with my feelings. That something will shift and I will change. But none of this happens. No one notices or cares. Except for me. The only one who’s proud of me is me, which is disappointing because it’s hard not to drink vodka and I want people to praise me for it. With reluctance, I accept that I need to be proud of myself. That I ran the marathon but no one is there to celebrate with me. And that’s ok because I did it for me. Yes. I did it for me.

And so now, during this current crisis, I find myself thinking about vodka in the shower. My mind tells me that it will help me feel better. And that everyone is drinking so I should join them. A couple of drinks here and there isn’t a big deal. And it’s a pandemic! Drinking will make me part of something and make me feel better. It will help me cope.

But I’ve decided that I’m not willing to lean into vodka for help this time. I miss drinking. I do. Drinking tucked me in every night. But I struggle with moderation. Either I’m drinking every day or I’m not. I see the people who are drinking every day. They have something to look forward to. Something that adds a spark to a long and dull day. I don’t judge these people. I am jealous of them.

For now, I resist all temptation and remind myself that my mind lies to me regularly. My mind can be very convincing so this takes work. After I shower, I eat dinner. Then I eat ice cream. And ice cream is good but not as good as vodka. But it will do. For now.

Mom to teenagers who spends her time writing, teaching, and eating papaya. A champion of kids with chronic or critical illness and the moms who love them.