I’ve Stepped Off the Edge of the World

I’m alone tonight in an all too familiar darkness, hoping, praying the Words will be enough. But this might be where the story ends.

A brief non-sequitur:

When a friend I’d met through social media told me that she loved me, I had a visceral reaction. I responded thusly:

“Love is a word that is so easily thrown around. One whose use and misuse can be equally devastating. Too powerful a word, to be sure, to be wasted on someone you’ve never met or even spoken with. I have indeed been loved. My grandparents loved me, completely and unconditionally. My cousin loved me. My best friend, Paul. They are all gone now. The last of those who knew and loved me. Those whose love was true and genuine, and was, for me, the very breath in my lungs. Those whose love was safe and inspired me to try to love myself. Those who, despite my utter failure in being able to do so, loved me so well that it often brought me to tears.

You cannot love me…. You don’t know me. What you love are the Words I’ve strung together in some blog entries. I can appreciate that, I truly can. Words can be amazingly powerful. Heartbreakingly so.

You can’t love me because what you love about me is no longer true. You love the Words in the blog I wrote called Positively Sober. A blog written by a girl just trying to stay sober. But I’m not sober now. I relapsed. I’ve regressed to the junkie that was lying in wait, scratching and clawing her way from the depths of my soul. A junkie born and tended to by the very opposite of love. A junkie whose body is failing, whose mind is at war with itself, whose soul lies in ruins. The ruins created, by the way, in the wake of the destruction caused by someone who would whisper in my ear ‘I love you’ even as he stole the very life force from my being. Over and over again. Those fucking words.”

Truth is, there’s a connection, a bond formed, especially from shared experiences, and most especially, from shared painful experiences. We’re human and those shared experiences, the ones which we sometimes feel will consume us, are necessary for our very survival.  No one can exist in a vacuum. Though I’ll be God damned if I haven’t tried to do just that recently. It’s no way to live.

A sad, slow wash came over me tonight. I’m kicking from a relapse after about 70 days of sobriety. My last chance. And tonight as I type, I’m fighting, fighting against the swirling vortex of entropy that has become my life.

I collapsed earlier in a ball of heaping sobs, struggling to catch my breath as I contemplated this new reality, this final fucking reality. This stuttered death that stretches out long ahead of me. Perpetual dying has taken its toll. My formidable opponent. I surrender.

I never stopped thinking I could beat it. I never doubted my resolve. Until now. Now I know I am defeated. My addiction has won.

God, it’s so fucking quiet here. I feel like there should be some grand conversation, some…I don’t know, something. It’s so quiet. I yearn to hear another’s voice. To talk to me. About ordinary things, about extraordinary things. Anything to distract me from this dark quiet for a while. The silence is deafening. And it is heartbreaking.

I was thinking today of the benchmarks of my decline, physical and otherwise. I stopped working. I stopped writing, for Christ’s sake. The sign posts along the road to my demise. That’s fucking poetic right there.

There are things I want you to know about me, other than that I’m an AIDS-infected junkie. I lived life well once. I lived, I dreamed, I accomplished.

My words were brought to life on stage, and it made my heart swell with joy.

I’m a terrible cook.

I’m terrified of flying.

And I suck at algebra.

I’m a black belt in karate and a baseline piano player.

I’m a bibliophile, and I’d be hard-pressed to name my favorite author. But among my favorites I’d have to include Rimbaud, Kerouac, Burroughs, Poe, Harper Lee, Dumas, Hemingway, Rudyard Kipling. The list goes on and on.

My favorite book when I was a child was Unicorn and the Moon. I lost my copy of it years ago, but I can still picture its well-worn cover and it brings a smile to my face as I remember sitting in my grandmother’s lap as she read it to me.

I’m passionate about Boston sports.  Going to Fenway Park to watch the Red Sox, which I haven’t done in years, gives me the chills every time. I love going to Gillette Stadium to watch my beloved Pats (though Tom Brady lost me when he started modeling Uggs. Jesus.). I’ve been to the Garden, but I’ve never seen the Celtics play there. I wish I could’ve seen a Celts game.

The first concert I ever saw was Frank Sinatra. I took my grandparents. It was the best night of my life. I’ve also seen Baryshnikov dance and Jerry Lewis act on stage. I’m an old soul.

I love Star Wars and Star Trek equally, and that makes me a freak even in the Geek world.

I once lived in the same small town in Connecticut as Stephen King (not at the same time he was living there), and that knowledge for some reason made me really happy.

I’ve never had sex where it felt safe or right or OK in any way. That particular gift was ruined for me when I was 8 years old.

Getting lost in the pages of a book has saved my life on more than one occasion.

I have the ashes of my best friend, Paul, sitting in my office at home because I haven’t been able to bring myself to scatter them yet. But if I ever had the strength, physically and emotionally, to do it, it would be at Yankee Stadium, because he was as big a Yankees fan as I am a Sox fan. Despite that, we loved each other.

The last writing project I was working on before I got too sick to work was a screenplay loosely based on Paul’s life.

I sleep with the light on because the dark absolutely terrifies me. Most nights, in fact, I try to wait for the sun’s ascent before I dare close my eyes and succumb to sleep because I am terrified of what my mind’s eye has in store for me.

I wish I’d had the chance to swim with the dolphins. Also, I’ve never seen palm trees in real life. I love Boston, but Northeast winters are the bane of my existence.

I’m tired. And sick. I need to close my eyes. I pray for a peaceful slumber this night. We’ll see what the sunrise brings…

 

 

 

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Lost

I’m perfectly torn between fleeing from the chimeras I have created and embracing them. It’s the very reason that I’m forever balancing so precariously on this precipice, an abyss on either side, both of which threaten to consume me, no matter which I plunge into.

The whole fabric of my character is laid bare in these Words I set forth, willingly or not. My tremendous hunger for experience and life, my insatiable curiosity, desires, courage, and tenacity, my self-flagellation, self-loathing, my drunkenness, my sobriety, my fears and obsessions, my morbidity and mortality, my desperate loneliness and fear of judgment, my unfathomable boredom, my sense of loss and mourning, and my most desperate desire: that I were able to just Be.

I’m at war with myself. This violent and burning battle that I am at once embroiled in and merely witness to from afar. There appears no egress, no liberation from it all. At least no way that isn’t likely to kill me sooner rather than later.

And it all comes back to the Words.

What’s It Going To Take

She walks along the road with dreams of redemption,

she wanders innocent through the night.

She can only hope for divine intervention;

troubles run too deep, too many to mention.

[Then]

I feel a cold hand making the sign of the cross on my forehead. I hear a familiar voice reciting the Lord’s prayer. He is leaning in close. It’s the former pastor from the church I attended for many years in my youth and young adulthood. He’s giving me last rites. It’s the second time I’ve received them. I try to blink my eyes open and focus on my surroundings, but that requires strength I do not have right now. I’m burning up. I move my hand to try to get his attention. The sudden movement startles him and he jumps. I hadn’t been awake in days. He leans in close as I struggle to say what I need to say. He encourages me not to strain. Still, he leans in to hear me. “Not. Fucking. Yet.” I struggle for breath between each word and then collapse back into the bed. He laughs despite himself. The nurse standing next to him is horrified by my vulgarity before a man of the cloth. I close my eyes again. I will not open them again for 2 more days.

This was several months ago. After another failed attempt at staying sober, I relapsed in an epic way. I had been struggling to stay clean as my fear grew about my declining health. After so many years of self-abuse and going on and off treatment for the HIV, my body was breaking down. My T-cell count was bottoming out, my viral load skyrocketed. I was dealing with several infections, rampant seizures, horrible night sweats. Instead of doing the right thing and checking in to the hospital so the doctors could figure out what the hell to do with me, I sought solace in the warm embrace of my addiction. For days I stayed holed up in some shithole in the city using massive amounts of cocaine and heroin, making myself numb, erasing the fear, the pain, the unknown. At some point it was more than my body could handle. I started convulsing and went into cardiac arrest. I don’t remember it happening, or much about what went on over the next week or so. I know my heart stopped twice and needed to be restarted. I know that my fever was over 104 when I was admitted and that my lungs were near collapse they were so filled with fluid. And I know that the doctors worked their asses off to bring me back.

But the first real, solid memory I have of that first week is waking up to my old minister giving me last rites. I remember feeling his hand on my head; it was cold against my fevered brow. I remember his voice, which was oddly soothing despite the fact that he was preparing me for death. And I remember his laugh when I swore at him. It just kind of came out. I remember feeling angry, not that he was there but rather that I was so close to death and it seemed so beyond my control to do anything about it at that moment. I had put myself there. Again. And I wasn’t ready. Not. Fucking Yet.

When my minister came back after I was more coherent, I apologized for swearing at him and he told me that he laughed because he knew that meant I was fighting. He was right; I was fighting. I didn’t want to die. I just had to figure out how the hell to live.

So I spent some time in the hospital, recovering from the overdose and being treated for various AIDS-related issues and complications. I’m not a good patient. I despise being in the hospital. I feel marked. Disease clings to me. I’m an addict, an AIDS-infected junkie. No matter that there’s no correlation between the two in my particular case; they both define me. And death hangs heavy in the air around me. I am marked. But there was more to me than this once.

In the hospital, this is all I am. Nothing more. I’m a patient. A sick one. A defiant one. A case study. Looking back, I know how tirelessly the doctors and nurses worked to save my sorry life, but being there I feel like they just come in and see my symptoms, they jot things down on their charts, push buttons, stick me with needles. It’s always cold and there’s a sense of sameness. Day in and day out, it’s the same thing. I’m always waiting for my life to end while I’m lying in that bed. It’s terrifying.

I tried to distract myself while I was there. Tried to distract myself with words–my own, other people’s–with music, television, prayer, meditation, anything to escape the physical agony. Sweat would bead on my brow and I had energy to do little more than stay still, afraid to move. My eyes would close despite my struggle to keep them open. I would try to control my breathing. I’d drift off only to wake up moments later to the sound of a primal, guttural scream. The sound came from deep within me, a response to the pain, the fear, the desperation.

I spent several weeks in the hospital. As I started to regain some strength, the old demons started working their way in again. I signed myself out despite the protestations of my doctor. Before long I was back in the city, using again. I ended up back in the hospital with pneumonia not long after. When I got out after treatment for the pneumonia, I was determined to stay sober. And I did just that. For 48 days. Then another relapse at the end of July. This was a short one. A couple of days. Regret and fear immediately set it. I had the sense just a day into it that I would not make it out alive this time if I didn’t stop right then. That probably saved my life since it ended the run quickly.

[Between Then and Now]

Over the past 6 or 7 weeks, I have been fighting as hard as I can to stay clean and to fix some of the damage I’ve done to my body. It’s probably been the most difficult thing I’ve ever done because I know that I don’t have the option of using again if it all gets to be too much. That is no longer a viable escape for me. If I use it will kill me. Simple as that. So I’ve been focusing on restoring my health as much as I can and trying to take things a day at a time.

It’s been frustrating. The medications that I was on started to work. My T-cells started to edge up. But at least one of the meds was destroying my liver, so the doctors had to switch the regimen around. I’m not sure yet whether this new regimen will work and that scares the hell out of me. My heart is enlarged and there’s fluid around it. That makes breathing difficult sometimes. I’ve been having more seizures lately. I still double over several times a day with searing gut pain. I have to go in for a spinal tap, which has been rescheduled several times because I’ve been too sick to have the procedure done.

Still, I am far more afraid at this point of my addiction than I am of AIDS. It’s true my health is in a current state of suck, but the larger problem is that fear and despair have me all in their stabby embrace and I feel stuck in this vicious cycle of poor health, leading to mind-numbing anxiety and depression and anger, leading to a desperate desire to remedy that, and the only solution I’ve ever found easy enough is to get good and dead behind the eyes. When my health is bad I inevitably start thinking about the abuse that resulted in me getting the disease in the first place. It’s a funny thing…and by funny I mean fucked up, not ha-ha: as I lie here contemplating my past, my present, and whether or not I’m even going to get a future, all I can think about is the monster that put me here when he raped me and passed along this virus. The gift that keeps on giving. I had managed for some time now to put those nightmares behind me and now they’re back: the memories, the terror. I close my eyes and all I see is his face. I squeeze my eyes tight against the horror and his face morphs into this horrific beast that tears my flesh and I can almost see in my mind’s eye the very moment he infects me. The moment his abuse becomes my death sentence. He stole my childhood and killed my soul so many years ago and now he’s managing to take the rest of me. I can fight the battles as hard as I’m able: I can stay sober and believe that I deserve a future. I can live well and do good and not let his actions lock me so deep inside myself that I can’t escape. But ultimately, he will win. That’s just the truth. And I am so angry about that I can hardly breathe. Above all, I am sad. I am so devastatingly sad and heartbroken.

Surrender

God knows there have been times over the last few years when I’ve contemplated my own mortality. I’ve been sick before and got myself so messed up on junk that it’s been a real possibility before. But not like this. This time it seems like it’s all out of my hands. I have never before felt so out of control.

A friend asked me a while back if I was dying. I responded to her thusly: I am dying…we all are, really. Life’s just one giant journey toward the end game. But I don’t know if I’m actively dying. There are days I think I could be. There are days I wish I would be. But I don’t know. I just know how bad I feel a lot of the time and how scared I am that I may have caused damage to my body that can’t be undone. I know my viral load is high and my T-cells are low. I know there’s something wrong that’s causing me tremendous pain more often than not. I know I have trouble eating. Trouble walking. Hearing. Focusing. I also know a lot of this is my fault, because I have polluted my already compromised body with toxins for so long that I don’t know how I can expect it to now come back from all that.

I know that I am frustrated and scared. I wake up not knowing if I’m going to be able to get out of bed that day. On the days I am, I take full advantage and try to do as much as I can. On the days I can’t…well, those days are like I’m watching everything through someone else’s eyes. For as slowly as the hours can drag by while I’m confined to my couch, too nauseous or in too much pain to move, it’s like I’m watching everything at the speed of light. I’m watching the world go by and I want to fucking jump in but I can’t.

Existence is so much bigger than ourselves. Humans are egocentric; we think the universe revolves around us. In reality, we are barely measurable in the grand scheme of things. Life is an amazing thing. We have such little time, relatively speaking, and the time we waste is heartbreaking. It breaks my heart anyway.

I believe in a power far greater than us. I know that some people don’t. But it gives me comfort, to believe that there is something beyond this mere existence. I think there’s a reason for everything. For the suffering, the hurt. I have to believe that because otherwise none of it would make any sense. I believe there’s something after and I believe that we go on in some way. That gives me comfort.

I’ve twice been in the presence of death. At the bedside of someone as they’ve shuffled off this mortal coil. I’ve felt in a very visceral way the end of a life. It’s a most ominous feeling. To be in the presence of one as they take their last breath, their heart beats their last beat. But I found it oddly peaceful. As devastating as it was, I felt like I was witness to the transition between one journey and another and it made me feel less alone and I pray that it made them feel less alone.

Dying is so taboo. It’s not something people want to talk about. I’m afraid of death. Of dying, more specifically. I don’t want to be alone. That scares me. I don’t think I fear what comes next necessarily. And I do believe there is something. But we humans are so attached to this life we know. The thought of life carrying on without us is mind-boggling. But I will take my last breath some day and life will go on. People everywhere will go about their business completely unaffected by my absence. The people who’ve known me may reflect momentarily on my life and if and how I affected them, but then the sun will set and rise again and the daily routines will continue as always. That’s humbling. But that’s OK.

But in the time I have left there are things I want to do. There just are. Little things, big things. Ordinary things, extraordinary things.

When my best friend died a couple of years ago my life changed in ways I can’t describe. His death changed me forever. Talk about someone who’d had an impact. He had no family to speak of and since he’d named me next-of-kin it fell to me to lay him to rest. It was that process that truly gave me pause about how we honor those that die. I didn’t really know what he wanted, so I improvised. I held a memorial service for him that was meant to honor his memory and give those who knew and loved him a chance to come together in community and mourn.

The service was lovely and I think served its intended purpose. But then I was left with the question of what to do with his remains. I had him cremated. To this day his ashes remain on my mantle piece because it took me a long time to decide what to do with them. The decision weighed heavily on me. The weight of responsibility I felt (and feel) was tremendous. Eventually I decided that I would spread his ashes at Yankee Stadium because he was a huge Yanks fan and I knew that he would love the idea. But that wasn’t enough. It was then that I started writing the screenplay based on his life and I decided that once I was finished with it, I would invite a group of people who loved him and we would take a trip, a pilgrimage, to Yankee Stadium and we would lay him to rest together, in a final act of love for this wonderful man.

Then I relapsed. And I got sick. And the ashes remained on my mantle. And they remain there still. It’s one of the things I’m desperate to do before it’s too late.

So in thinking of all that, I’ve come to contemplate what will happen when I die. Whether it’s in a week, a month, a year…what will happen when I die. I know this: I want to be cremated. I’d like a small memorial service. I’ve been working on the logistics of the service recently. Having planned my friend’s, I know the intricacies involved, from the music that’s played to the words that are spoken. It feels like the final expression of my humanity and I want to get it right. As to what happens after, I don’t know. I struggled for a long time with what to do with my friend’s ashes. I have no idea what I want done with mine. I want them spread out in the word somewhere, but I’ve no idea where. The world has always scared me. I lived in it as much as I could, but my experience with it resulted in a great deal of fear. I don’t want to feel that in death. I want to be free.

[Now]

I’m in the habit of typing out quotes that I like, those that inspire or move or scare me, those that speak to me on some level. Some of the quotes are from famous people: writers, politicians, artists, philosophers. Others are from friends or even random people, said during conversations I overhear in a store or on the street. I type out the quotes on index cards and either file them away for future use (because you never know when a simple quote will be the catalyst for a marathon writing session) or I pin them to the bulletin board beside my desk.

Some of the quotes I currently have pinned up include the following:

“Monsters are real. Ghosts are real too. They live inside us. And sometimes, they win.” –Stephen King

“I am not what happened to me. I am what I choose to become.” –Carl Jung

“You must stay drunk on writing so reality cannot destroy you.” –Ray Bradbury

“If you gaze long enough into an abyss, the abyss will gaze back into you.” –Friedrich Nietzsche

“There is nothing to writing. All you do is sit down at a typewriter and bleed.” –Ernest Hemingway

“Numbing the pain for a while will make it worse when you finally feel it.” –J. K. Rowling

“I can be changed by what happens to me. But I refuse to be reduced by it.” –Maya Angelou

“To live is the rarest thing in the world. Most people exist, that is all.” –Oscar Wilde

“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.'” –Mary Anne Radmacher

One quote that I’ve been tossing around my head lately, and which prompted this manic, agitated writing frenzy, is this:

“It’s like I have a loaded gun in my mouth and my finger is on the trigger, and I like the taste of the gunmetal.” –Robert Downey, Jr.

I’m 50 days clean and sober as of this writing. Considering I awoke at 5:00 this morning with the crushing weight of anxiety stealing the air from my lungs, sober is a major coup right now. I’ve been sitting at my computer for hours, writing furiously, sweating out some cravings, some fear, and some rage. Fifty days and I still shake and feel the yearning. But here’s the thing. I have been drowning in a sea of absinthe and despair for 30 years. But at least it gave me a fair shot of survival. Without the absinthe? Jesus. I shudder to think. It offered me the promise of relief. Even if, as for the last 50 days, I didn’t pick up, I knew it was there if I needed it.

I have no idea, no earthly idea how to live sober. Coping is not exactly among my few marketable skills. Talk about arrested development. My development was arrested before I even entered puberty. At 8, in the squalid basement of my neighbor’s house. Even before that, I suppose, as I experienced the insanity that lie within my own family. Or maybe when I took my first drink at 11? Smoked my first joint at 13? Did my first bump a couple of years later? Tied off for the first time? My point is, it was far earlier than would have been necessary for me to develop any real coping skills. Picking up IS my coping skill.

“It’s like I have a loaded gun in my mouth and my finger is on the trigger, and I like the taste of the gunmetal.”

I used to like the taste of the gunmetal. I used to LOVE the taste, quite frankly. I remember well the relief I felt the first time I drank, the first time I used. Whether it was the burn and the warmth as the liquid slid down my throat, or the immediate relief as I snorted a line, or the cold needle against my warm skin and the sting as I pushed it into my vein…it all promised relief. But over 30 years I’ve needed more and more, bigger and badder to even come close. And now I have an overwhelming sense of doom about it all. I know I can’t pick up again. It will kill me, of that I am certain.

The circumstances of my very existence have made me afraid of the world and everything in it. Is staying sober going to help that? Is it sobriety or life itself that is my Kobayashi Maru? My no-win scenario? I’m afraid to look too deeply for fear of finding the answer.

What’s it going to take?

It’s nearly fall now. Between being in the hospital and being high, I missed the spring and summer. I guess that’s something I would normally just take for granted, that time. But I’ve had too many close calls, and I know my health is precarious at best. I don’t want to miss any more time. I want to be outside and feel the sun. I want to walk in the rain as the sun sets gently around me. I want to sit by the lake at my grandfather’s cabin, staring out to where the water meets the sky, fishing pole in hand, surrounded by the majestic beauty and serenity of that place. I want to get back to Fenway to see my beloved Sox, to Gillette to see the Pats. I want to read and get lost in the words on the page. I want write, to create, to collaborate, to work, to do all the things I was doing before I wasn’t. Before I fell headlong back in to the abyss of addiction and despair. To live, to dance, and most of all to not be afraid. I want to close my eyes and not dream of shooting up to stop the pain in my body and the noise in my head. I want to live.

Above all, I want to live.

Flatline: Back from the Dead. Physically, At Least

I’m here. Back? Again. Still? It’s all very confusing. I remember very little of the last few weeks.

Before: I remember feeling quite unwell. Weak. Hurting. Scared. But determined. Determined that I was doing the right thing by not doing anything. Sure this was the right decision. Confident in my resolve. I actually felt at peace with the decision. I thought I did anyway. I woke up one day feeling worse than usual. I remember coughing up blood. I remember feeling very disconnected from everything. I remember screaming in pain. And then it goes blank.

After: I remember waking up, a tube down my throat, unable to move. I was tethered to a myriad of beeping, flashing machines. It wasn’t an entirely unfamiliar sight, but something was different this time. Something felt different. As my eyes adjusted after being closed for the better part of a week, my head with swimming with memories. Falling, crashing, struggling for breath. I started thrashing against the various tubes that were holding me in place. A nurse came running in to calm me. Was I alive? Jesus, I was alive. My eyes closed again and didn’t open for another 30 hours. When I awoke this time, I was staring into face of my doctor. He was talking, but I could only hear half of what he was saying. It was hard to keep my eyes open, let alone concentrate on a conversation.

“Stop fighting me, stop fighting yourself, start fighting the disease,” I heard. “You deserve to live.”

He said those words, and the tears began go roll. I wept silently as he left me to ponder that thought, which he did only after touching my shoulder in a show of affection. A touch. An affectionate touch. That gesture did more for me than any medicine could at that moment. It had been so long since I’d had any physical contact that didn’t end in pain. Humans aren’t meant to live free of contact. If I’d have had the strength I would have reached out for an embrace. God, what I’d do for a hug right now. A touch to know I’m alive and that someone cares. Did I believe his words? Did I deserve to live? Did anyone care? He did. And at that moment, that was all that mattered.

I’m such a wretched mess. A broken shell of who I once promised to be. The next few days had me  feeling anxious and confused. Also sad. I didn’t know what to do. That’s just a fact. I say I know what I wanted. I say I’d made my choice. But the truth is I didn’t have a clue. The truth is this wasn’t my decision to make; I had no right to make it. The truth is I was terrified that I’d choose wrong. And so there I was, lying in a hospital bed having made the decision to come off meds and let nature takes its course, only now I’m thinking that maybe that’s wrong. Maybe that’s letting the bad guys win. And if there’s one thing I’ve learned it is that while they may have won some battles, it is NOT ok to let them win the war.

So. Decision time. What do I do? God knows I’ve had time on my hands to weigh the options. On the surface, they’re pretty clear cut: Take the meds and I can stay alive. Don’t take the meds and I’m absolutely hastening my death. My body is breaking down. My t-cells have bottomed out, my viral load is through the roof. I’m battling infections and exhaustion and addiction, and physical trauma.

Those are my options: life or death. Sure, on the surface, the options are clear. But there’s a tangled mess that runs deep beneath both those choices. To choose to go back on the meds means I have to choose life. I have to WANT to live and want it badly, because there’s a whole world of hurt that goes along with living and I need to know I can face it and deal with it, and do it alone. Otherwise, this is all just a waste of time. Choosing life means that my physical self will surely improve. The doctors can control most of that. I can feel good again. I can exist without, or basically without, pain. The infections can be dealt with. I can regain strength.

But it’s the other part of me that’s of concern. If I choose life it means I have to go back to dealing with all that comes with it and I have to do it sober. For a long time I managed to do just that. I had a good life. I was blessed with a lot of good things. Most important, I had once surrounded myself with people who loved me and whom I loved. You can’t live life in a vacuum. I’ve been doing just that for the better part of 2 years. I’ve isolated myself, and in doing so have forgotten what it means to be alive. Many of my friends long ago gave up on me. They couldn’t understand my self-loathing. It made them uncomfortable. They watched me go from a successful, happy person living a full life, to this empty, hot mess. They couldn’t bear to watch any longer. Who could blame them? Slowly, they floated from the center of my life to the periphery, and finally vanished altogether.

If I choose to live I have to be prepared for what that means. It’s going to be a struggle to stay sober because it’s easier to face this stuff completely numb. But if I go back to using then I may as well make sure I take enough to stop my heart because it will all just be a colossal waste. Living means I have to deal with the abuse from my past. If I don’t deal with it the terror will consume me in short order. It always does. It means facing my abuser. It means reaching back 30 years to begin to heal the child I was in order to accept the adult I am. It means I have to learn to face the shame. It means I have to learn to NOT hate myself. Do I have it in me to do that?

I flatlined twice on my way to the hospital that day, nearly a month ago. I died. I remember things. I think I do anyway. I’m a believer. In God, in a life beyond this mortal coil. And I’m sure my beliefs (and fervent hopes) have in some way skewed the reality of what I actually experienced. To that end, I’m not going to write about those things. Not yet anyway. I want to keep that for myself for now.

Right now I have to deal with what’s in front of me. I’ve lost the hearing in my right ear thanks to one of the infections I didn’t bother seeking treatment for. Physically I’m weaker than I’ve ever been. I can’t walk without assistance. My speech is impaired. My lungs still ache when I breathe in too deeply. My gut is a pit of fire. I have a feeding tube that’s delivering the necessary nutrition. My desire to eat is nonexistent.

I just feel very alone. I’m wholly unsure of my ability to deal with what’s headed my way. I know one thing: I have a lot to work out. I don’t want to die in this misery. I thought I was ready. I was wrong.

—-

A month ago I was feeling quite apathetic about life. I didn’t have a death wish, exactly. But I also didn’t have anything resembling a life wish. The demon of apathy had taken possession of me at a very early age. I felt her shadow across my path constantly. It was like a shadow of disapproval, silent and insidious, like a poison slowly injected into the veins. Something else I know a bit about.

As I sit here, struggling to come to terms with this reality, all I can do is write it out. It’s all I’ve ever done. I want to write of my desire to live, but it’s so new to me I hardly know where to start, except to say that my hunger for life is insatiable, but so too, is my fear of it. A fear born from evil, deeply imbued. A fear whose birth I can directly pinpoint. The years which have intervened since that day of the Fear belong to that dark side of life in whose shadow I have struggled to breathe. It is indeed an affliction which poisoned me at the zenith and the nadir of my being, no matter how gallantly I struggle against it.

But the Words will come. They always do. And for now, as ever before, they will sustain me. They will give me strength, the Words.

 

Beyond Words

My friend B called me last night. One of his typical late-night phone calls. He knows me well. B is a palliative care physician in New York who came into my life several years ago after I was introduced to him by a friend who had read a book he’d written on end-of-life care. Our friendship began as a simple email correspondence and flourished over time into great philosophical debates about euthanasia, suicide, living and dying well, and, of course, the Red Sox. In some attempt to inspire me back to life, B suggested several months ago that we collaborate on an article for Atlantic Monthly on “dying hard in America.” I agreed, partly because I was interested in the project and partly because it did, in fact, give me something to hold on tight to. We struggled with the format in the beginning. He wanted me to write straight prose about living and dying with AIDS. But who wants to listen to a woman with AIDS bitch and moan about life and death, I argued, if it isn’t tempered with the wit and wisdom of a God-fearing, Springsteen-loving, Sox-bashing, Jewish (mother-of-a) doctor who, for reasons that defy logic, became her friend.

Thus began our journey. We decided that our email correspondence would serve as the bulk of the thing and we’d worry about editing it later. There are no truer words than those written by the pair of us at obscene hours of the night when life and death and all that weighs heavily upon our shoulders leaves us to the mercy of the Words. It has become our opus. Only, I can’t write anymore, and B called to find out why.

My silence always scares him, he says. He fears it’ll become too much of a burden and I will lose the battle to the Silence. I told him I wanted to stop writing the article. I couldn’t tell him why. It’s all just become too much. The raw emotion of the words I was trying to share left me far more vulnerable than I was comfortable with.

He let me get away with that for now, but vows to re-engage me soon. He asked a final question before he lightened the mood with baseball banter: Was I thinking of going to the cabin? I assured him I wasn’t. We made a deal and I gave my word that I’d tell him if it ever came to that. We have to trust each other.

Death Be Not Proud

I awoke from a fitful sleep around 6:00 tonight and walked outside for the first time in days. The cold stung my face and there was a deep ache in my lungs as I inhaled the painfully fresh air. I squinted hard against the sun, which was still high in the sky, though descending quickly, preparing to be engulfed by the impending dark. The impending dark. That’s what the recent past has been for me. Gloom and angst and despair and hopelessness, dealt with in times past by yours truly by ingesting whatever was on hand that promised to shield me from such unpleasantness. Of course, we all know that that particular solution brings with it its own set of consequences, no? While I don’t like to admit it, that solution is temporary, and ultimately far more horrifying than just dealing with the realities of one’s life.

So the past couple months have been rough, and I’ve been mostly absent from this social media thing because (a) I didn’t have the energy, physical or otherwise, to sit and write, and (b) I just didn’t give a shit. Some friends say I’ve been isolating. They’re right. I have been. They’re worried I’m using. I’m not. Or at least I haven’t yet. I have no idea what the next 5 minutes will bring. But as I type this I’m 160 days clean and sober. But, fuck, I’ve wanted to use in the worst way. I’ve wanted to use so bad it hurts. I could have used some numb these last couple of months.

What’s been going on? First this happened:

[Written in early February]

I’m sitting in my grandfather’s house. The house in which I lived until I was 8, next to the man who, along with my beloved grandmother, raised me until my parents came back to claim me. I’m lying next to my grandfather in his hospital bed, provided to him about a month ago by hospice. He and I are the only ones here. The house is quiet, except for the whirring of the machine supplying oxygen to help him breathe. The machine, mercifully, is drowning out the occasional moans and sighs coming from my grandfather. I take those sounds as indications of pain and I am stricken each time I hear one. I want to take his pain. He has been unconscious for 2 days. They have him on high doses of morphine to stem the pain that racks his body when he wakes. The cancer is beastly and is consuming him from the inside out. Selfishly, I want him to open his eyes, to look at me, to smile, to tell me he loves me, to squeeze my hand. Anything. I’ll take anything. Just a brief response, and then a return to peace. It’s selfish, I know. But I’m desperate for it. I’ve been by his side since Monday. It’s devastating to be here. But it’s where I have to be. It is the greatest gift I can give him, and it’s the greatest gift he can give me. To be here with him, by his side. Holding his hand, stroking his forehead, wiping his brow. This is his final journey. And I am part of it. I am here. Present. He is peaceful. I want this to be peaceful for him, above all else. Meanwhile, there’s a storm raging in my gut, in my heart. I am losing him. I am lost. Exactly two people in this world ever loved me unconditionally: my grandmother and my grandfather. I lost my grandmother 5 years, 9 months, and 19 days ago. It’s time for my grandfather to join her. He is ready. I am not. There’s a pillow under my grandfather’s legs. The blankets are pulled up to his chest. His hands lie by his side. His mouth is open, his breathing labored. I spend most of the time with my hand placed gently on his chest, rising and falling with the cadence of each labored breath. The breaths were coming more evenly earlier today. Now they are halted, far less rhythmic. I can feel his heart beating beneath my hand. I never want to take my hand away. I need to feel his heart. My own beats in time with his. We are connected on a level far deeper than I can understand or convey. I can feel his soul, his spirit stirring, restless. I can hear our hearts beating in time. I talk gently to him. I don’t know if he hears me. I think he does. The sights, the sounds, the smells of this house. The memories. They envelop me. I am a child again. I am safe. I never want to leave. I want to stay forever in this exact moment in time. I would crawl into my grandparent’s bed as a child. After a nightmare, or when I wasn’t feeling well. It provided an instant measure of comfort. I melted into their arms, their embrace, and knew I was safe. I was loved. I was protected. I’m 8 years old again. Only instead of me being ripped away from them, he is now being ripped away from me. Heartache is a real and true thing. My grandfather. Gramps. Grampy. I miss his voice already. I heard it for the last time 2 days ago. I already long to hear it again. The throaty southern accent. At once gruff and soothing. Please. Just one more word. A lucid moment. One more thing I can lock away to remember. To hold on to. We always think there will be enough time, don’t we? But I can feel the time racing away even as I push against it with all my strength and will. It’s no longer years or months or weeks or days. It’s hours or minutes or seconds. Passing and passing and passing, cruelly, before I can catch my breath to pray and beg and plead. Just a little more time. To lie here with him, my hand on his chest, my cheek against his. He is warm. He hasn’t taken food or liquid in 3 days. His organs will start to fail soon. It won’t be long. And I will be here, next to him, holding his hand. I am on this journey with him. His journey is my own now. Because it is the greatest gift I can give him, and the greatest gift he can give me.

And then this happened:

[Written two days later]

Gramp passed away at 2:18 this afternoon. I was lying next to him, holding his hand. His breathing had become shallow during the course of the day, and then he took one final breath and he was gone. Just like that. The journey that had started for this man, this World War II vet, this husband, father, grandfather, great-grandfather, friend back in 1921, ended peacefully before my eyes 90 years later. I have witnessed the very beginning of life and the very end of it. The first brought me immeasurable joy; the second, immeasurable sorrow. Still, I feel blessed to have been there with him. But how my heart aches this night. I’m exhausted. Physically and emotionally. I feel empty. He is at peace. There is no more pain. He’s back with my grandmother, where he belongs. For these things, I am so grateful. I’m back home now. I was going to spend another night at his house, but I couldn’t bear the silence, the stillness, the emptiness. It took the funeral home an hour to come get my grandfather this afternoon. I never moved from his side. I wanted to stay with him as long as I could. It was so surreal. To feel the warmth, the breath, the essence of life leave and be replaced by such stillness. I felt his skin grow cold, watched the color drain from his face. At one point I thought I felt his chest rise with a breath. I know it was my mind playing tricks on me but it sent a chill up my spine. I couldn’t bring myself to leave his side. Finally, though, I had to. The funeral home came to get him. I kissed his forehead, hugged him tight, and told him I loved him. And then I was alone. Alone in the house. Alone in life. For the first time in my life, there is no one on this planet who loves me and has my back no matter what. My grandparents were my rock, my protectors, my life. Now both of them are gone. I am fighting with everything I have not to let my sadness morph into despair and desperation. I can feel myself on the razor’s edge of self-destruction, wanting so badly to just be with my grandparents again. Wanting so badly to just end the pain, once and for all. But I know that anything less than living my life clean and sober and in some meaningful way would be doing a huge disservice to my grandparents. These wonderful, loving people who raised me to respect life, not spit in its face. I can be sad. But if I let it consume me, I will be dishonoring them. So I’ll get through this night. And the next one. And the one after that. And I’ll do it with the strength they instilled in me during the first 8 years of my life. That strength has pulled me through hell and back. And I can take some comfort knowing that my grandparents are together again, holding hands, watching down on me, pulling for me still. Always.

———

Anyway. That’s what’s been going on the last couple of months.

Also, I came off my meds. The pain in my gut is almost intolerable. And the seizures are coming more frequently. I don’t know if I’d given the meds enough time to work, but my viral load hadn’t come down and my T-cells hadn’t improved much. Plus? I stopped giving a fuck. So there’s that.

I have a bad attitude. I know. I’m working on it.

It’s snowing tonight. It’s a light snow, and it’s dancing around in the light from the back deck. It’s really quite magnificent.

I just opened the widow beside me a crack to get some fresh air. My dog, who was curled next to me on the couch, jumped down in protest to the invasion of the cold. A snowflake just came in through the screen and landed on his nose, dissolving almost instantly. He licked his nose and jumped back up to nuzzle me. I’m happy for the company.

I am desperate for sleep. But I’m terrified to close my eyes. Nightmares. They started the day of my grandfather’s wake. Perpetuated, no doubt, by grief and sadness. But the loss wasn’t the catalyst. Not precisely anyway. The catalyst was the horror that followed. Having to deal with my bat-shit crazy family, sure. But worse still? The encounter at my beloved grandfather’s funeral.

But I can’t write about that now. In fact, I’m done writing altogether this night. I’m going to sit outside for a bit. I need some fresh air.

Two Roads Diverged…

I got a text from a friend earlier. “Where are you,” it read. I laughed to myself as I read it and wondered for a moment whether she meant literally or existentially. I wondered because the question could be taken either way. If she meant it literally, then I was (and am) sitting at a desk in an outrageously overpriced hotel in the great city of Boston. Its rooms are hardly reflective of the exorbitant cost, but its relative proximity to Fenway Park command it, I suppose. If she meant it existentially, well, then I was (and am) in the ninth circle of my own private Idaho. Damn. That metaphor worked better when I whispered to myself. Where I am is in my head. And it’s a fucking jungle in here.

Had the question been asked last night, the answer would have been altogether different. Last night, I communed, quite literally, with the dead. I spent several hours at my grandmother’s graveside, propped up against her headstone, talking endlessly about nothing. Not nothing, I suppose. Rather, everything. Everything I couldn’t talk to her about when she was alive. Everything I can’t bring myself to say aloud to anyone with a, you know, pulse. Don’t worry, she didn’t answer me back. I’m not completely delusional. Still, I felt a modicum of comfort sitting there. I’d planned on leaving after I poured my heart out to her. Instead I laid down and just fell asleep. It was a brief slumber, but a fairly peaceful one.

A week or so ago I tweeted the following Erich Fromme quote: “To die is poignantly bitter; the idea of having to die without having lived is unbearable.” Those words resonated with me. I quoted Fromme, and then wrote my own [expanded upon] version of his thoughts: The courage to love is what sustains me now. But if I don’t live to be old, don’t think that I couldn’t have made something out of my life. My only regret is that I will die without having left my mark. At 18 I was prepared to take on the world, to suck all the marrow out of life. Now I just want to hold onto it for a while. I just wish the fear would go away.

Two roads diverged. Which will I take? I’ve no idea, really. I don’t know much, but here’s what I do know: So far I’ve been given 39 years, 8 months,  11 days, 19 hours, and some odd minutes to make something of a life I don’t understand in a world I don’t comprehend. I’ve spent a lot of time questioning my existence. I’ve also spent a lot of time in awe at the world around me and for that I am grateful. I think maybe our reward for putting up with all the other crap is all that having a heart, mind, and soul brings with it. I have been alive to see the sun rise and set roughly 14,486 times; I have stood at the edge of the ocean, looking out into the seeming abyss, and stared with wonder at its vast beauty and mystery; I have read words by poets that have touched my soul, and listened to music that has, at times, moved me to tears; I have felt love and hate, and I have tried to understand the dynamics of both; I have known despair as well as joy, and have tried to live my life with some sense of purpose. I have often struggled to find that purpose, but I have never denied its ultimate existence. Now, in the face of a decision that I’m not sure I have the right to make, I want desperately to understand that purpose once and for all. Only my heart and my God can help me with that one.

Two roads diverged. It’s time to pick a path. But for right now, I have 23 days sober. And I have today. I can’t ask for more than that.