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.

 

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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.

I Was There; Now I’m Here…

1972 – I’m born.

1972-1980 – I live mostly with my grandparents, who shower me with affection and make me feel absolutely safe and loved. My guardian angels.

1980 – I’m delivered back to the hands of my parents, who, one would have hoped, had grown up enough to take responsibility for their child.

1980 (2 weeks after being put back with my parents) – I am raped for the first time by “J.” The abuse goes on for years.

1980-1983 – I live every day in fear and self-loathing. The abuse continues.

1983 – I take my first drink.

1986 – I start high school. I already have a dealer. I have used pot, pills, booze.

1988 – Cocaine. I start cutting. Physical pain lessens the emotional pain. I can deal better with the physical pain. I’m almost immune to it now. A suicide attempt. A feeble attempt at best. The proverbial cry for help. None comes.

1990 – I graduate high school. Take 6 months off to figure out what I want to do with my life. I think they call it “finding yourself.”

1990 – I start college. Despite my continued and increasing drug and alcohol use, I am wildly successful in college. I write for the literary magazine and school paper. I write my first play, which the college produces my junior year.

1993 – I write my first screenplay, at the behest of one my favorite and most inspired English professors. It’s awful. Really, truly, embarrassingly awful.

1995 – I have a degree, ambition, and a raging drug and alcohol problem.

1995 – I collapse, I assume from exhaustion, in front of a restaurant and am brought to the hospital. I am diagnosed during that stay with HIV. I choose not to process the information. I am released from the hospital and the liquor store is my first stop. Then my dealer’s place. I am pretty well constantly loaded for the next month or so.

1995-1999 – I get my foot in the publishing industry, working first as an associate editor and then a development editor for a large publishing company in Boston. For the last year of my employment there, I bring vodka in my thermos every day for lunch. I have extra bottles in my car in case I work late and run out. When I go out for client lunches, I often make detours to meet my dealer.

1999 – Jaded by the publishing world, I look for something else to do that will pay my bills and be somewhat fulfilling.  I land a job as a journalist at a company that will be my home for the next 11 years. For 2 of those years, I work in-house at the company in NY. When I decide to return to Boston, I continue to work as a freelancer for the next 9 years for the same company. This same year I start an editorial company, working with many talented authors. My own writing takes a dark turn and becomes my albatross.

2000 – I have a nearly completed a manuscript and send out 10 queries to agents in Boston and New York, hoping to get a bite from at least one. Seven respond. I sign with one in NY and he starts shopping my manuscript. Later that year I fuck that up by blowing every deadline I’m ever given. I’m starting to self destruct.

2001 – 9/11. I lose a friend in the attacks on our country. My anger at the world is exponentially increased. So, too, is my self-hatred.

2002 – I have little recollection of this year, actually. There was an arrest for DUI at some point. My health starts to deteriorate toward the end of the year. I am angry all the time.

2003 – I overdose twice. Brought back once by friends and once at the hospital. Fearing I’m going to die, my friends, led by my former pastor, stage an intervention. I surrender.  I get clean. Sobriety sticks.  I start what will turn out to be a 7-year run of sobriety. I work hard at it every single day. I work the program. I am grateful. I am embracing life. My health improves. I enjoy wonderful success, editing for others, selling my own writing. I have phenomenal friends. I buy my first house. Then my second. I get a dog. Then a second. Life is good. I meet a guy. We get married. Two months into the marriage he hits me for the first time.

2004-2005 – The abuse intensifies. A broken collar bone one time. Two broken ribs another. Bruises, cuts. I stay clean. Work is what sustains me now. The old demons start to stretch and claw their way back in.

2006 – My beloved grandmother succumbs to breast cancer. I am devastated. My heart is broken.  But I do not resort to my old habits. Yet. I do, however, garner the strength to kick my abusive prick of a husband to the curb once and for all. I file a restraining order when he tells me he’s bought a gun and that I better watch my back. Don’t have to tell me twice.

2007-2010 – I work non-stop. I continue with the editing work, because I love it, but most of my income for several years now has come from my own writing. I’ve written several plays that have been produced in and around Boston. I start my third screenplay.

January 2010 – My health starts to deteriorate again. I am frustrated, angry, scared. Meanwhile, the sleeping monster within me stirs, letting me know he’s still there. And he is hungry.

April 2010 – I make a call. The call that will change everything. The monster awakens.

December 2010 – My best friend dies.

2010-2011 – There are several large chunks of time I just can’t recall.

August  2011 – After almost 90 days clean, I use. Hard. Shortly thereafter I suffer a stroke and spend a couple of weeks in the hospital.

October 2011 – My cousin dies in front of me from an overdose.

October 2011 – I am hospitalized with pneumonia and put on a ventilator for several days.

October 23, 2011 – Day 1 sober.

February 2011 – My grandfather dies. I am lying in his hospital bed with him when he passes. It is both beautiful and devastating.

2012 – I turn 40. Jesus.

2012 – My health continues to deteriorate, thanks in part to my refusing to go back on meds. It’s a decision I struggle with on a daily basis. Mostly I ignore it and focus on writing, trying to finish this last project.

May 2012 – I have some decisions to make.

May 20, 2012 – 211 days sober. Stay tuned…

Having the Guts to Live

I spent a few days at the beginning of this month in the hospital. I’d had a seizure, which has been happening more and more frequently–and usually doesn’t require a hospital visit–but this time I fell hard during the seizure, right into (and ultimately through) a glass-top table in my living room. It’s actually the second time that’s happened to me. I may invest in a wooden coffee table. Or, perhaps I’ll just toss beanbag chairs throughout the room to cushion any future falls.

Anyway. When my doctor came into the room the day after I was admitted, he shook his head and lost his cool. My doctor is usually very patient with me. But I think he’s done watching me kill myself one bad decision at a time. And he told me as much. There was no beating around the bush this time. He told me that because I had come off the meds, my immune system is shot and that body cannot keep up the fight. Nothing I didn’t already know, doc.

So I’ve spent the last week or so doing some serious soul-searching. When I came home from the hospital this past time, I was forced to look at what the hell has been going on in my life. I’m haunted in this house right now and I need to do something about that. I’ve given all the power to those who’ve hurt me and it’s time to take some back. One of the first things I saw when I walked into my living room was a needle lying on the coffee table. I have about 200 hypodermic needles in a box that I had been using to give my dog her insulin before she died not long ago. I hadn’t yet got rid of them and the night before I went back in the hospital I was desperate for a high and considering I’ve been sober for about 6 months and I no longer have a secret stash, I figured I’d improvise. I cooked down some Benadryl I had lying around and was going to inject it. It’s supposed to give you quite the speed high. Really? Is this what it’s come down to? Jesus. I don’t remember why I stopped before I injected it, but the night I got home from the hospital, the syringe was still on the table. I thought of picking it up and placing it against a vein in the crook of my arm. It was just instinct. I’d struggled all day with pain and anxiety. I wanted to be numb. That’s my defense mechanism. Get numb. But if I go back to that now…well, I’m out of chances. This is my last shot. I pushed the plunger and released the liquid into the sink and then I just sat and cried.

I realize I’ve been consumed with self-pity and it’s time to get over it.

A brief non sequitur:

Dante reserved the last and most dire of his nine descending, concentric rings of hell for sinners of betrayal. These were the worst sinners of all, who had the trust of those who loved them yet betrayed that confidence for their own pleasure, their own gain. Like Brutus, Or Cassius, Or Judas with his empty hand full of silver.

As far as I’ve ever been able to tell, with my admittedly superficial understanding, the only sin that Dante missed was self-pity.  I wonder which ring he would have set aside for those who can think of nothing but lost opportunities, of what was done, of what should have been done, and the bleak contemplation of redemption.

Still and all, there is a line, however thin, between self-pity and self-loathing. I consider self-pity to be a weakness of childhood, which can, of course, extend far into those double-digit years. And self-loathing is a much different, more insidious creature. It is the self-imposed curse of those who can conceive all sides of an argument, yet who cannot – or will not – choose to believe there is good in himself.

I wonder when it began. Idly enough, to be sure, because I don’t really care.

And I wonder if I ever really had any sort of judgment with regard to things that can be changed, things that cannot, and whether I ever really knew the difference.

A friend recently gave me a book called Guts by Kristen Johnston and told me I should read it immediately. I love when people are so passionate about their book recommendations. To me, it means that the book moved that person in some way and that’s really all the convincing I need.

I knew who Kristen Johnston was before I picked up the book. I like her because she’s talented and I enjoy her work; I adore her because she’s snarky as hell and that is a characteristic that I admire the hell out of.  Upon completion of her book, I found I love Ms. Johnston for her raw honesty and utter strength. I aspire to those things and so I look to strong women like Kristen Johnston as examples in my sober journey.

To me, the mark of a good book is its ability to make you react viscerally. There were moments of unadulterated hilarity in Guts, times I laughed out loud. And there were many moments where I was left unconsciously shaking my head, shivering, cringing. Her story was utterly relatable. From her childhood stories chronicling her love of Judy Blume books, her tendency to exist as times in her imagination, her penchant for drinking vodka-laced OJ at the local HoJo’s. Those were all things I could relate to. And then there were the bigger themes, of course: the desperation, loneliness, shame, fear, rage. The hopelessness known so well by all addicts.

The line in the book that is kicking around my head as I write this reads thusly: “…despite years of slowly killing myself, all I wanted, with more passion and ferocity than I’d ever wanted anything else in my entire life, was to live.” Yep. That about sums it up. That line clinched this particular memoir as among those that have had a deep, powerful effect on me at a time when I needed to hear the message the author intended. I’ve had trouble with that whole wanting to live thing lately. I’ve been struggling mightily with it, in fact. But today, as  I sit at my desk, window open, sun streaming in, the warmth of spring making it just a little easier to breathe, I can say for the first time in weeks, months, really: I want to live. Thank you, Ms. Johnston, for reminding me. I want to live.

Ms. Jonhston writes that she’s “convinced the only people worth knowing are those who’ve had at least one dark night of the soul.” Well, hell, honey, let me introduce myself. My name is M, and my particular dark night of the soul has lasted about a year and a half. Truth be told, I’m not worth knowing right now. It’s dark in my world, in my head, in my soul. But I was once, and if I’m open to some light seeping into this tortured mind of mine, I may yet be worth it again. Here’s to abandoning the end game and embracing life.  Here’s to having the Guts to live.

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.

Tired…

It’s fear and uncertainty that influence me on every level these days. My existence seems almost mechanical at times, as I try to bury what I can’t bring myself to face. So I’ve worked too hard, and I’ve stayed awake too long, and I’ve indulged too often, and I’ve tried to forget. But in the process, I’ve forgotten what the whole point is, or perhaps I never knew it. I think I did though, because I remember a time when I could feel. I just want that back.
 
I’m tired.
       I’m tired of doing this.
              I’m tired of doing this alone.
 
I’m 49 days sober today.

Some Comfort. Some Solace.

December 1st. Today is World AIDS Day. I’ve no idea when this started or really what the hell it all means. I suppose it’s meant to be a day of awareness, perhaps compassion, education, etc. For the last 10 years I’ve attended an interfaith healing service on December 1. Similar services are held all over, but the one I attend is at an Episcopal church down the road from where I went to college. It’s a small church, but very active. I went there for a year or so while I was in school. I’m not Episcopalian, but I like to keep my options open. I was raised Catholic, but I defected when I was in my early teens and converted to Lutheranism. Over the years I’ve dipped my toe in many religions and traditions. Because really, how can I make an informed decision without knowing all the players? And what I’ve discovered is that I don’t want to be pigeonholed. I’m all about ecumenicalism. I joined some friends at the local synagogue for 2 years after reading the works of Rebbe Menachem Schneerson. Absolutely inspirational, that guy. I even frequented a Buddhist temple for a while. Because really? Monks? How bad-ass are they? Catholic monks are fine with their Gregorian chants and all, but Buddhist monks with their Shaolin martial arts? Yeah, they rock.

Anyway. The healing service. I’ve been going for 10 years. It has little to do with physical healing. I mean no one expects their T-cells to miraculously increase after getting hands laid on them or anything. It has much more to do with spiritual and emotional healing. For me, it’s always been a powerful fellowship. It’s a draining experience. Very emotional. The sermon usually revolves around educating on the disease; the emotion comes in with the laying on of hands. I’ve always found this practice to be especially extraordinary. I really have. The first couple of years I refused to go up and experience it. I stayed in the pew, head bowed, praying for those courageous enough to partake in the practice. A friend convinced me several years in to go up and just give myself over to it. I made my way slowly to the front and sat in the middle of a group of 5 or 6 ministers and lay people whose sole purpose at that moment was to make me feel human and to take on some of the pain. They asked if I was HIV positive and I said yes. I think it was the first time I had ever said it aloud. They put their hands on me—not something I’m usually comfortable with—and prayed. Hard as I tried, I couldn’t stop the tears. Sobs racked my body as these complete strangers embraced me without fear, without judgment, and prayed for me. I’d never before—or since—felt such loving contact. My grandmother was the only other person in my life who made me feel that I was worth loving. Had I ever been brave enough to tell her about my diagnosis before her death several years ago she would not have hesitated to wrap me a loving embrace. I’m sure of it. I wish I’d been brave enough. God I miss just being held.

So I went to the service tonight. I didn’t really want to go out. I haven’t been feeling well, and my lungs are still pretty messed up. Each inhalation of breath is accompanied by painful coughs and spasms. The last thing I wanted to do was bundle up against the cold and ride in the back of a cab for an hour to go to this service. But I did because I had to. I’m glad I went. I walked with some trepidation to the front of the church to receive the laying on of hands, and it was as powerful this time as in times past. This service was a little bittersweet. One of the men who runs the service became a good friend of mine over the years. Peter Jacobs was his name. Hell of a nice guy. He passed away 3 weeks ago. His absence was palpable and devastating. But his presence was felt in a far greater way. And that, I suppose, is where faith comes in.