What I Want to Tell You

It is easy to see the beginning of things, and harder to see the ends.
–Joan Didion

There are several formats to Alcoholics Anonymous meetings, and depending on where you live, certain formats are more common than others. A popular format in San Francisco is the “speaker/discussion” meeting. One member stands before the others and tells his “story”. Later the floor is open for discussion. Anyone who has been to a handful of speaker/discussion meetings knows that they follow a basic formula: The speaker shares “what it was like, what happened, and what it’s like now.”

It only takes a few meetings to see the pattern of loss and redemption. What we give each other is the darkness, and then the light. We give hope to the hopeless, each of us a radiant phoenix rising from the ashes of our own self-destruction. At least, that is the idea. Darkness, then light. Always end with the light.

Despite a general shyness in the company of new strangers, I have always struggled with the time limits of “my story”; trying to compress thirty-two years into twenty minutes. I love the anecdote, the episode, the telling detail. Luckily for the audience, I also believe in leaving them wanting more. So like most others in AA, I pick and choose. Over time, through repetition, led by the audience’s gratifying laughter or hushed silence, I hone my life story. I choose a handful of episodes; familiar signposts leading me through the tale.

When I was newly sober the “what it was like” took much longer to tell. It was very grim, because I was still so close to it all, the mess I’d made of everything. I could not see the dark streak of humor running through my days of desperation. I could not yet laugh at the ridiculous lengths I had gone to get high. In those days I was scared of the world and preferred the immediate escape of chemicals to just about anything else life could offer. I ate more of everything; drugs, drink, love, sex. The more the…well, no, it never got better. I was a rabid hamster scampering within a wheel, never getting anywhere, certainly not better.

But that’s not what I want to talk about, because it’s simply the same story told over and over, with different characters and different outfits, and the lighting is harsh and the scenery quite dull. What I want to tell you is what happened.

One Sunday in October of 1999, deep in the gloom that descended whenever I crashed after a crystal meth binge, I was bickering with David, my boyfriend of the time, who by then was a little sick of my mood swings.

He had been after me all weekend to call my mother. In my current condition I didn’t want to talk to anyone, not him, certainly not my mother. I had a couple of e-mails from her, unread, sitting in my inbox. She had been out to visit only a month before, and her tentative diagnosis of Parkinson’s was a subject that I could not, on that day, begin to handle. I did not have within me the ability to string together a few syllables of hope for her, though my boyfriend would not let up. Finally he pulled a scrap of paper from his pocket and thrust it at me.

“Fine. Here. I didn’t want to tell you. She called. She wanted to tell you herself.” There were a few words scrawled in his hand: “Not Parkinson’s. ALS. Lou Gehrig’s.”

I didn’t know what it meant. “What does this mean?” I asked him. He didn’t know. “She didn’t tell you?” No. I only knew that the name Lou Gehrig meant something bleak.

“Will you call her now?” he asked.

“Just a minute.” I sat down at the computer and logged onto the Internet. I typed “ALS” into the search engine, and followed a link:

ALS is a fatal neuromuscular disease characterized by progressive muscle weakness resulting in paralysis.

And several lines later:

There is no cure for ALS. In general, weakness progresses steadily with no periods of improvement or stability and leads to death, usually within 3 to 6 years.

///

When I was growing up my mother could be unpredictable. There were the good days; days that register in my memory with the warm timbre of her voice, her laugh that broke up the ice within me. And then there were the other days, of inexplicable rages and hysterical sobbing. Years later, after my own experiences with addiction, I understood that those were the days she had been drinking. Eventually we’d both have AA in common.

Despite these mood swings I had always felt that my mother understood me better than anyone else. One afternoon, when I was ten, she and I were in the backyard of our house in Falcon Heights, Minnesota, painting my bike. I stood off to the side and watched her shake the can of spray paint: ticka ticka ticka. My bike, stripped of its wheels and chain, sat upside down on a patch of dirt beneath the oak tree. The leaves above us were lit up green in the warm summer sun. My mother had acquiesced to my demand for a more masculine color. I was nine when my parents bought me the bright yellow bike, but at ten I was ready for a change. We were painting my bike blue. Or rather, she was painting my bike blue and because she was in a good mood I was keeping her company.

Through the thin gaps between the slats of our tall wooden fence, I saw a shadow crossing our yard. It swept along the fence until it reached the open gate of our backyard, and in walked Mrs. McIntyre.

Mrs. McIntyre was the closest thing our neighborhood had to a busybody. She and her husband lived two doors down, and her son Johnny was my younger brother’s age. They played together all the time, but in my mother’s opinion Johnny was a spoiled brat, and because my mother rarely expressed a negative opinion of anyone, I liked to agree. The McIntyres had bought Johnny every single Star Wars action figure and spaceship and trash compactor available at Target and it made both my brother and I jealous. When the inevitable squabbles erupted between Johnny and my brother, Johnny would sweep all the Stars Wars toys into his lap and tell my brother to go home.

The week before I had stopped at their house, collecting my brother for dinner, when Mrs. McIntyre cornered me in the foyer. “Michael, I heard about your parents,” she said, using a tone of voice that she probably thought sounded concerned. “Why did they get divorced?”

Her bluntness caught me off guard. I had looked away from her, down at my shoes. Nobody on our block had ever been divorced. Nobody on our block had ever come out of the closet, either, but I wasn’t about to tell Mrs. McIntyre that both my parents had done just that. “I don’t know,” I told her.

That afternoon she crossed the yard, a small bundle of determination wrapped in a cardigan. She dispensed with small talk.

“Michael, did you teach Johnny to say ‘asshole’?”

I stood there with my mouth open, looking at her and then at my mother, who stood with the spray paint can frozen in mid-air. My mother looked back at me.

“Uh, no,” I said. “No, I didn’t.”

“Well there’s nobody else around who could have taught him that.”

I looked back at my mother, certain that her fear of confrontation would lead her to choose Mrs. McIntyre’s side, if only to be nice.

“I didn’t teach him that,” I said. “I don’t know who taught him that word, but it wasn’t me.”

“Johnny said you taught him the word,” she said, smiling as though she’d caught me in a trap.

That little lying brat, I thought.

Mrs. McIntyre turned her attention to my mother. “Susan, this makes me very unhappy.”

I looked with dread at my mother, and saw a smile tugging at the corners of her mouth. She shook the spray paint again ticka ticka ticka, looking Mrs. McIntyre straight in the eye. “Michael said he didn’t do it.” My heart leaped.

“Well then, why would Johnny say that?” Mrs. McIntyre snapped.

“Maybe,” my mother said, “Johnny is lying.”

Mrs. McIntyre stood there, glaring at my mother. She opened her mouth but nothing came out. She shook her head in disgust, then turned and stomped across our yard. She slipped through the gate, chin held high.

I looked at my mother with adoration. She smiled back. “That woman,” she said, “is such a bitch.”

///

I would like to tell you that I sprung into selfless service immediately after her diagnosis. It is true that I could not sleep, there in San Francisco. The compulsion to go to her was overwhelming. Within a month I had quit my job as a bartender and bought a one-way ticket to Minneapolis, imagining myself rushing to her rescue, when the truth was that nobody could protect her. But I couldn’t stay still.

After a few years of addiction, however, my emotional compass was a little off. The only way I knew how to connect with others was to elicit their sympathy. Oh, my life is so awful. Well, now I had the definitive trump card; a new excuse for old problems. My mother is sick, and that’s why I’m such a mess. I couldn’t understand why bill collectors could be so callous. My mother has a terminal illness, as if I was the first person in the world with such trouble.

I do not want to tell you this: that even after her diagnosis, during a time when I can only imagine what she was feeling, I continued to whine about “my struggle with drugs.” She had always been the person I confided in, the first person I’d go to with my problems, the first person I’d tell of my successes. Of course, there had been few of the latter back then. After a few such earnest confessions her partner, Lee, finally wrote me a letter: Michael, please stop. Your mother can no longer handle hearing such things; they make her lose sleep, which she needs so desperately. Please tell anyone else, please tell me, if you must, but don’t tell her.

To say I was ashamed would be an understatement. My face flamed with embarrassment while reading her words. But she was telling me something that I did not want to hear, something that took me a long time to learn: my confessor, my confidante, was already gone.

///

Two months after her diagnosis, I packed for Minneapolis. I told my boyfriend that I wasn’t sure when I’d be back, but that I couldn’t stay in San Francisco, losing sleep over my mother every night. There wasn’t much he could do but give me his blessing. I think he hoped that a change of cities would sober me up. So did I.

Every Sunday I’d wake early in the little studio apartment I had rented a mile from their house. Sometimes I was hung over. Sometimes, though, I had managed not to drink for several days. I’d make myself a cup of coffee and shower. While I dressed I listened to NPR. I had it on all the time, even when I was sleeping. The murmuring voices made me feel less alone.

My mother and Lee had loaned me their Subaru, since my mother could no longer drive. I’d pull up in front of their house every Sunday at eight. She’d watch from their front window, and when she saw me coming up the street she’d push open the front door, bundled tight in her long winter coat, her canvas bag in her hand. She wore a brace on one foot, and she’d takes forever to navigate her way down the stairs to the sidewalk, which fortunately gave me time to run up and grab her arm. She wouldn’t wait inside. Lee had tried for months to get her to relax and slow down, to stop cleaning the kitchen and vacuuming the rugs and doing the laundry, but since she had to leave her job my mother had refused to sit down. She wouldn’t stop moving.

Our ten-minute drive to church grew more silent over the weeks. Unlike most people with ALS, my mother had a rare type of the disease that included dementia. She did not grow disoriented, like a person with Alzheimer’s. Rather it seemed like the dementia simplified her. She stopped initiating conversations and answered questions with only one or two words.

The eight-thirty service at Plymouth Congregational Church was small; only forty or so regulars. She and I would sit on the right hand side of the chapel, always, four or five rows from the back. We’d smile and nod at the other parishioners, though we rarely talked to anyone. On the mornings when I was hung over I was consumed with guilt, my soul sick and fearful. I was beginning to think that I couldn’t stop.

But other mornings it was easier for me to sit with her, and to believe in myself as I looked people in the eye and said “Good morning.”

Each week a woman who wore turtlenecks and cardigan sweaters and a red pair of glasses with large, round frames sat at the piano beside the altar and began to play. We stood together, clutching hymnals in our hands, our voices barely filling the small chapel. When the music began, my mother would cry. Each and every time. Barely five notes into the hymn and her shoulders would start shaking. The muscles of her face had weakened, and her mouth fell open while the sobs shook her entire body. They were silent sobs: when the muscles that controlled her swallowing began to fail, she had begun choking on her own saliva. The fluids could be dangerous to her already-compromised lungs. The only solution was to block off her airway, and perform a tracheostomy. As part of the surgery her vocal cords were removed.

Her eyes would grow frightened and confused and sometimes she’d look up at me, standing beside her, with a look of such utter pain and bewilderment that I’d vow inwardly to hunt down God and kill Him.

Every Sunday she cried, and every Sunday I’d do the only thing I could. I’d hold her with my right arm, and I’d hold the hymnal in my left hand, though by that point the book was useless, as we were both crying too hard to sing.

When the music stopped we could sit again, and collect ourselves. She’d open her canvas bag and search for the pack of tissues inside. After three weeks I bought a handkerchief and carried it in my pocket on Sunday mornings.

We’d dry our eyes and blow our noses during the sermon. If I hadn’t completely soaked the handkerchief, there was always the Communion. Once a month the small congregation gathered in a circle at the altar, and Communion wafers were passed, followed by a chalice of grape juice. My mother often choked on the wafer; her swallowing muscles had weakened, but she was too determined to call it quits on the body of Christ. Let it dissolve on your tongue, I’d whisper to her, but even that was risky. She tried to wait until we were back in the pew before spitting it out into the handkerchief.

The parishioners were good sports. They noticed the tears and the choking and the spit, but looked away politely. Sometimes after a service one of them would come up to me, hold my hand between theirs and say “You’re a good son.”

I knew they meant well, but on the mornings when I was hung over, I didn’t quite buy it.

One day during the sermon she opened her bag, fished around inside, then pulled out a pen and her pad of paper. She grasped the pen as well as she could, placed the tip against the paper, and scrawled something there. I pretended to pay attention to the sermon, but wondered what she was up to. She finished writing, then turned the pad to me.

I’m afraid I won’t get into heaven, it said.

///

I finally got sober. After enough demoralizing mornings of remorse I went to AA, and after a few more I asked for help. On October 2, 2000, nearly one year after her diagnosis, I finally stopped. What happened is not that her diagnosis got me sober. What happened is that it heightened the urgency to get here.

The overwhelming fear I had carried during those years, a fear of nearly everything, faded slowly, by degree. I faced up to some responsibilities. I paid some bills, and made amends to people I had hurt. My mother told me to go back to San Francisco, and to live my life. Lee and their tight circle of friends were caring for her better than I ever could, so I did. I went home but was not able to salvage my relationship with David. I was single for the first time in five years. I moved out on my own, and learned through much trial and error how to take care of myself. Then, for the first time in years, I was tested for HIV. I had four vials of blood drawn from the crook of my arm, and two weeks later the test came back positive.

I can say that one of my first moments of maturity came when I decided not to tell my family. I knew, finally, to keep this particular trump card close to my chest. I knew that my mother deserved not to worry, and I knew she deserved the full attention of my family. It may seem like it was the obvious thing to do, and drawing attention to it only shows how long it took me to grow up. But I made many mistakes back then, and it’s a relief to know that I did one thing right.

///

Sometime during those first few months after her diagnosis, she told me that she hoped I could forgive her for having been such a bad mother. I don’t know if she ever stopped feeling that her illness was punishment for past deeds: between the dementia and the loss of her speaking ability, it was difficult to know what she was thinking. Of course I don’t think she deserved ALS, and I told her that. And maybe she’d tell me the same; that my disease is not my fault. But I’d disagree.

A recent Rolling Stone article caused a minor sensation when it described the existence in the gay community of self-described “bug chasers”: men who knowingly engage in unprotected sex in an attempt to seroconvert. Whatever their motives, these men became lighting rods for moral outrage, from gays and straights alike. As you might imagine, this phenomenon was blown a little out of proportion, but underneath the tabloid-style frenzy was a sliver of truth.

I was not a bug chaser, but neither can I condemn these men. I can’t tell you why exactly I did not always protect myself; whether it was youthful rebellion or drug-clouded perception, whether it was a lack of self-regard, or a desire for sex without barriers. Maybe it was all of these things. What I can tell you is that being an HIV-negative gay man was often like standing on the edge of a cliff, peering over the edge into an abyss; a swirling vortex that grew wider and wider. And because of the new drugs there were fewer men dying. And because HIV can deplete testosterone, and because many HIV-positive men are on testosterone replacement therapy, they have beautifully muscular bodies; what I would call, in my less charitable moments, the Holy Grail of modern gay culture. And it was said that positive men were having guilt-free, unprotected sex with other positive men. And then the abyss seemed more like a big Jacuzzi, a pool with a little leak at the bottom: some got sucked out, but most everyone else was having a pretty good time. And I toed the line and felt the sick pull of vertigo and then, without ever making a real decision, I fell in. When I was negative it seemed as though everyone was positive, and then I seroconverted and found out I was wrong. And then the virus was inside me, and there was no going back.

I am to blame, there is no doubt in my mind. I can’t decide if it’s the same thing as deserving it. Had she known of my diagnosis, my mother would have probably disagreed, just as I tried to convince her that she didn’t deserve ALS.

///

On February 1st, 2002, I boarded a plane for Minneapolis. Lee had called, Mom again was not doing well. I endured the three and a half hour flight, staring out the window at the dark landscape, at the lights of the cities and the small towns moving slowly below us.

We finally landed, and as we were pulling up to the gate I checked my cell phone and there was a message. It was Dorothy, one of their friends who helped take care of my mother. Her voice was low, she had been crying. “Michael, your mother just passed. Call us when you get in.”

I pressed the “end” button, and slid the phone back in my pocket. I glanced around at the other passengers. All of us standing, waiting in the back of the plane, watching everyone ahead gather their coats and bags and head up the aisle.

///

In the last two and a half years I have been to over 500 AA meetings. They have an effect. Instinctively now, I want to show you the light. People need these meetings because they need hope; they need the possibility of redemption. Like any culture, AA has its social constraints and customs; expectations of certain behavior. Yes, we admit our faults, we acknowledge our depression and fear, but always we must find the light. And telling you now all of this, I must fight the urge to finish the narrative arc, as if there was such a thing.

There are days when I am asked to stand before the others and tell my story, with the usual implication: give them hope, end with the light. There are days when I want to say that I don’t know what I am doing, that I would rather be at home, sitting vacantly in bed with the television flickering its blue rays across the walls of my room. There are days when I don’t want to give anything to anyone, and that if one more person speaks to me I will just be rubbed away. But my mother was never one to sit home and sulk, and I still try to learn from her example. So I go and tell my story, and at the end I give them the light and the hope, because that’s what they come for. And at the end I feel a little better myself.

But for you I will not finish the arc, because for this story there is no such thing. I can tell you that everything keeps changing. I can tell you that the five or six guideposts of my story are under constant revision, because new ones rise to take their place. I can tell you that I have plans for the future, that I’m very healthy, and that I may be in love. I can tell you that sometimes I’m angry that other people still get their mothers, and that I’m probably too melancholy for my own good.

A friend of mine recently asked what it was like to have HIV, how did it affect my life? Mostly, I told her, it just means I go to the doctor more often than other people. Every three months I have several vials of blood drawn from the crook of my arm. I meet with my doctor, who tells me that I may be one of the lucky ones; I could go years without the medications. It means I have to make a choice; when do I reveal my HIV status to prospective lovers? I prefer to get it out of the way. If it means rejection, then at least we’re not wasting each other’s time.

I have recently begun seeing a man who is HIV-negative. As you may imagine, there are many issues that arise in such a relationship; issues of risk and mortality, attachment and fear. And then there are the smaller issues. One of the side effects of the new HIV medications is facial wasting: the loss of fat beneath the cheekbones, leaving many with sunken cheeks. No one knows why, exactly. Last year I was talking about this with another friend of mine, who is HIV-negative. He told me he’d rather kill himself than suffer such side effects. “I’m vain, I know. I can’t help it,” he said. But I’m inclined to agree; it’s easy to have HIV, when no one can tell. How could my own vanity withstand such a blow? With what disappoint would my boyfriend wrestle?

At the time I told my friend that I’d rather die, too. Which is something I’d never admit to my mother, were she still alive. She gave up so many things in small increments; her running, her voice, good food. I learned some things, watching her. We make adjustments as they come, whether we thought we could handle them or not. Which is to say that I’m vain, but not enough. What I’m trying to tell you is that I’ll take them, the medications, when the time comes.

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