Diary Friday: Obedience

I didn’t know what to write in honor of today, which is World AIDS Day. Alex, of course, cuts to the heart of the matter. And there’s also this montage.

Two of my best friends have this disease. And I think of Joey, Michael … those I knew who have passed … young young people …

I decided to post a diary entry from the summer of 1996.

I wanted to write something in honor of today, and I immediately thought of the summer of 1996, so I went digging for the journal to find it. I knew what the journal itself looked like (I’m crazy like that) – and found it in no time. It’s a big old-fashioned ledger book. I read the entries I was looking for. And suddenly, the terror and the grief came flooding back. That was 10 years ago. TEN YEARS AGO. In those first few moments … I thought that my best friend would die within the year. It was a death sentence. The thought was so wrenching that when I think of Alex – losing ALL of her friends – having to say goodbye to ALL of her friends … I just don’t know how one survives it. I mean, we do … we all survive horrors, grief can be lived with, endured … but my memory of those first moments remain (although I never think about them anymore). My best friend is still here. He is healthy. But he is HIV positive. But when I “got the call” in 1996, it was as though the clock suddenly sped up – sands racing through the hourglass – no time, no time left at all …

This is in remembrance of all of those who have lost someone to this dread disease, this is in remembrance of all of those who have passed. This is also in honor of those who continue to fight the disease, those who live with it, those who walk side by side with it every day.

I am lucky. I am lucky that my two friends are still alive. That I can cherish every stinking moment that I have with them. I have been given that time. By modern medicine. Others were not so lucky.

Remember them today.

JULY 3 1996

Finally talked to my dear MJF. It’s been way too long. We are constantly either exactly neck and neck or one step ahead of one another. I mean that – we talk – and it has been over a month since I saw him – and of course we did the whole catching up thing – but – we don’t have to explain ourselves. I said one sentence about plannig the shower, and he knew every button it would push in me. Like: “Were you stressed about the cards?”

JULY 11, 1996

Words.

So sad. I can’t even begin to express this.

It’s odd – troubling – amusing – how used to looking for the drama I am – I act out uncertain moments in my head – to prepare –

It’s a comfortable known place – the playacting

It’s absurd what – comes up – surfaces – when death is involved

My thought process today – I mean it is absurd where my mind went and is still going. Then I catch myself. Look at yourself! I mean, I know I am in shock.

I can’t realize it yet. It is like I am in a nightmare.

I forget and then remember again. Dash of cold water —

It’s MJF.

I just can’t – Or – I can …

And I was at my desk today – doing my stupid job – thinking and thinking – in some sort of horrible dream – but – still – not really feeling it –

Then somewhere – it – smacked me on the side of the head – out of left field – I was gasping – and holding my heart –

and then it subsided –

leaving me cold and achey again.

I bought a ticket to Chicago forr 2 weeks from today.

JULY 24

Bought a ticket 2 weeks ago to Chicago on the1st – wave of this nightmare.

A waking nightmare.

But now – MJF is a part of this study – the Cocktail – he has been flown to NYC for a month – lots of drugs – it could save his life. It might not. He arrived yesterday.

And now I’m flying tomorrow to Chicago see MJF – only MJF’s here in NYC.

JULY 26

I’m in Madison Wisconsin. It’s all been a whirlwind. I spent yesterday morning with David and MJF in Hoboken.

MJF.

I saw MJF.

It’s all still so freakish – and scary – I can’t realize it somehow …

I have a friend who has a terminal disease now – and – I must adjust. Seeing MJF is – so normal – we’re so close – we would have moments of forgetfulness – and we would talk about other things – but then – in the pause that would follow, the virus would always reassert its presence. Jackie said to me, “It’s in the room with us.”

MJF looks very skinny to me – yet he looks strong. He is on a rigid and scary pill regimen. To skip any one of these pills, to forget – is to let the virus grab the reins. He was decribing to me the sense of urgency in this frantic pill-popping. He’s bombarding the virus (and the rest of his body) – To stop is lethal. In my head I got a picture of the crazy whack-a-mole games. I said, “It’s sort of like –” and I couldn’t get the word out – I did one vague gesture – and MJF nodded and said, “Yeah. Whack a mole.”

Beauty.

But he’s scared. Terrified. I am too.

Out of nowhere he said, “Oh, Sheila. What have I done to myself?”

He has it.

He has it.

I just can’t get used to it yet.

I feel that he is very blessed to be part of this study – maybe this virus can be regulated – Look at how far they have come in 5 years … If he can hang on for 5 more – who knows what other advances will come …

But the pills are making MJF sick.

It’s horrible to see. I feel so hopeless. No, not hopeless. I feel helpless.

There was lots of hysterical laughing. We all were battling back terror and despair. We talked about this. I felt giddy.

I was walking up the flights of steps to David and Maria’s – my heart was pounding. I was about to see MJF and how WEIRD it is that it is here in Hoboken and not in Chicago. What does that mean? Anything? It’s got to mean something!

I got to the 2nd flight and I heard MJF’s loud wonderful laugh – I love that laugh! – I had a feeling that some crazy tableau was waiting for me. I opened the door. David was standing right there – one arm up against the wall – in a sexy pose – hand on hip – TOTALLY NAKED – with his penis tucked beetween his legs so he looked like he had a vagina – and he said to me coquettishly (which was so grotesque), in a Cockney accent, “Tell me … am I pretty?”

MJF was around the corner, unseen – and I heard his laugh – that shocked pleased MJF laugh – I tried to comprehend what was before me, could not do it, and turned and walked away. Causing much hilarity.

So there was that element to our time together.

And then there were moments when we’d all well up – or one of us would – There were lots of scared silences during which we’d reach out to touch each other. Silent comfort. We’re all so scared.

MJF has mounds of pill bottles – and a chart so he can mark down what he’s taken …

It’s so weird – creepy – to actually get used to it. I haven’t really begun to do that yet. Except for those first days – I’m sort of blocking now. MJF and I talk a lot on the phone – about the Olympics, his shows, Jeremy – not just AIDS. I realize how good I am at making people laugh when things get heavy. I do that.

We would be having a very serious conversation – I remember one in particular – and then I made some crack – I couldn’t help myself – and MJF and David were literally falling down with laughter, staggering about.

I’m not doing it to discount the seriousness. I’m not doing it because I’m uncomfortable with sadness – I’m doing it because I sense in my bones that we need to laugh. I respect that power of laughter. It’s not really a conscious thing =- writing it down makes it conscious – but in the moment I just do it.

I mean, that bizarre humor was already inherent in the situation. (“Am I pretty?”) David and MJF took me to the Newark Airport, sending me off to visit MJF in Chicago. I mean – WHAT???

It’s surreal. I almost didn’t want to go. Missing out on time with MJF. But MJF said, “Something’s going to happen this weekend, Sheila.”

We’re all getting into mysticism here.

Trying desperately to MAKE SENSE of this.

God. God be with me.

AUG. 21, 1996

Hoboken. The feeling in the streets there. A nice wind. Wide sidewalks. Entrepreneurs. Walking towards my friends – could see Jim’s walk clearly.

Meeting. Hugs. Maria looks beautiful. Just beautiful.

Restaurant. Red and white tablecloths. The kids – 2 such dif. babies – dominating attention. At one point, all kinds of conversation going on – Maria and Brooke involved in talking – while Emma had Maria’s finger in her mouth and Brooke was dangling a toy in front of Mackenzie.

Brooke – cool and beautiful – long denim skirt, birkenstocks, pastel blue toenail polish, no makeup and a peach colored bandana. Fabulous. The 2 of us were awkwardly and hilariously rolling the stroller out of the restaurant and I said to her, “We look like an alternative lifestyles couple.” 2 lesbians with their baby. She had been solicited earlier. Pulled over to a cab. “Want to make a little $?” Upset her. “Do I look like a prostitute?” With her baby, her bandana, her sandals …??

Can’t realize that MJF is leaving. The 2 of us ….

I will write him a letter. It is good to be together, yet at the same time it’s like we’re holding each other at bay right now. Death is between us. We even tried to admit to each other tonight. We hugged goodbye and I felt nothing. Cold as a stone.

Denial. So deep. I could barely appreciate him, so much else was going on …

We are now forming a new friendship in a new landscape.

I made an awkward bumbling toast – to being together, to love, to health, to MJF – I wanted to try to break through my own banality. We haven’t all been together since David and Maria’s wedding. 1992. Years.

Maria’s wonderful emotional approving “Yes, let’s” smile across the table at me when I raised my glass –

Clink.

MJF … I think he’s afraid to go there. As I am. Before this whole study happened – there were those 2 or 3 days of – terror. God. It is all so surreal. How to talk about it. How to honor it. I have no idea.

I had brought Liz’s angel cards. The ones she gave me. We each picked one.

Jim – Beauty
Me – Healing (God. And the Angel Card of last new Year’s Eve: Openness – That prepared me. I have to be open in order to heal.)

MJF’s was tres interasant: Obedience.

Wow. That brought a coldness over the table. None of us could really deal wtih it.

David – Courage

Maria – God, what did she get? Oh yes. Peace.

Brooke also got courage.

Interesting point: People took out their cards and were keeping them – when actually you sholud put the card right back into the pile.

So David picked Courage, passed the plate to Maria – she picked – and then passed it to Brooke – who glanced around the table – and anxiously said, “Everyone should put their cards back in! You sholudn’t keep them!”

So we all put them back in, she shuffled them up – and she got Courage too. So – subconsciously – perhaps she knew what she needed.

I love all that. Helps me make sense of life. Helps me bear things. Helps me have joy.

We are all so exhausted. So scared.