February 15, 2010

This is how I remember it. I could spend a lot of time talking about the difference between perceived reality and actual reality and the huge canyon that straddles the gap, but it’s been done before and better than I ever could. For now, let’s just say that this is my story and I’m sticking to it.

I wrote this a long time ago. I read it every year. This the first time I have felt like sharing it. I don’t know why other than it’s been seven years and that feels like long enough.

So this is what happened seven years ago today. Tomorrow I’ll post what happened seven years ago tomorrow.

Before we begin, one of her favorite pictures of the two of us…


That day, Monday, February 15, 2010 was Presidents’ Day. Looking back on it, it seems fitting that it started that day considering how many different ways presidents and their museums figured into our Plucky Survivors See America journeys. But the most important thing, in terms of the sequence of events is concerned, is that I didn’t have to go to work that day. When I don’t have to get up with an alarm clock and be presentable to anyone, I usually stay up late and the night before was no exception. I think I finally hit the bed around 4am.

I do not wake easily even when I have had a full night’s sleep. I have two alarm clocks, both at a volume level marked “cacophony,” and both set to incorrect times so that when they go off I have to do a little bit of math to figure out what time it actually is. For some reason math wakes me up. Mary knew this about me and so anytime she called and suspected that she had caught me before my eyes were fully open, she would speak loudly and occasionally give me simple arithmetic questions.

Steve, however, didn’t know this about me so when he called at around 8am on that Monday morning, not only did he not increase his speaking volume to a low shout or ask me to calculate pi to the tenth decimal, but he also didn’t come across as terribly urgent.

“Mary is not doing so great,” he said calmly. “I think you should come over.”

“Okay,” I said, “I’ll be over in a while.”

I hung up the phone and rolled over, thinking that I would sleep for another couple of hours and then head over around lunch time. That seemed perfectly reasonable at that moment. As I drifted back to sleep though, my brain did its own version of math and put two and two together. I realized what the phone call really meant and I jumped out of bed as if there was an earthquake, instantly wide awake despite the fact that I had only gotten a few hours of sleep.

I showered and dressed quickly, calling Steve back as I headed out the door to tell him that I was now officially awake and was on my way over. He sounded relieved.

About a week earlier, just a couple of days after our aborted Plucky Mini trip, Mary had begun in-home hospice care. A hospital bed was brought in and installed in their bedroom, facing the windows so she could have a view of the trees in the backyard. She was put on a schedule of heavy drugs – morphine for the pain, ativan to keep her calm, and more. A portable toilet sat in the corner, although she had stubbornly refused to use it up to that point. There was no in-home nurse so Steve tended to her most of the time, while a rotating cast of friends and family came in to give him a little time off now and then.

I had last seen her on Saturday, February 13, when friends from her school came for a special ceremony. Mary had worked hard over the years to earn her masters in theology. She had completed all her coursework and the dreaded German language requirement but she had never gotten to writing her dissertation. That final step loomed large, especially in light of her deteriorating health over the last year.

But her classmates, professors, and the Dean all got together and reviewed the work she had done, focusing specifically on a paper she had written and presented at a conference in late 2008. Although not specifically her dissertation, it contained many of the basic concepts she intended to present when she wrote it, so the school decided that would do just fine under the circumstances. Her God School friends, a professor, and the Dean all joined Steve, me, and a few other friends at her house on that Saturday to officially confer her master’s degree in theology.

I was one of the first to arrive and seeing her there in that hospital bed, oxygen making her breathing a little easier but not much, was nothing short of devastating. It had been only a week since I had seen her last – dropping her off at home after the abbreviated Plucky Mini – but the decline in that short amount of time was almost shocking. It wasn’t just her appearance although that was certainly a part of it; thin – too thin, and sallow, her skin a dishwater gray and her eyes rheumy and unfocused. It became obvious quickly that her mental state had declined a lot also.

She recognized and greeted me but that was about the extent of our conversation other than her responding to simple yes or no questions. There was a moment where she came around enough to ask for a very specific blue scarf – she wanted to look nice for the ceremony, of course – and I went on a quest that threatened to turn into an Abbott and Costello routine.

“This one?” I’d ask.

“No, blue,” she’d manage.

“This is blue,” I’d reply.

“Different blue,” she’d say.

And then we’d repeat the whole thing over and over again until she finally accepted the ninety-seventh or so blue scarf that I found. Whether or not this was the actual blue scarf she was looking for or that she had merely grown tired of humoring me is up for debate but I suspect it was the latter. Regardless, the scarf and a nice suede hat improved her mood.

The ceremony was necessarily short; both funny and sad, although more sad than funny, I think. She got her graduation sash that replaced the scarf and a tassel that Steve laid gently on the suede hat, flipping it to the appropriate side at the right moment. After the Dean finished his brief speech, that left everyone including himself in tears, Mary said a few words – disconnected and a bit rambling but we all got the point: she was happy.

It was obvious that even this 15 minute ceremony was exhausting for her so we left her to rest while we all went upstairs to the living room for snacks and conversation. I wasn’t exactly hungry or in a talkative mood, but there was chocolate and it would’ve been impolite to eat and sulk in a corner. It wasn’t long before there was a noise from the bedroom downstairs and I went to go investigate only to find Mary trying to get out of the hospital bed.

“Mary, where are you going?” I asked.

“Upstairs,” she said firmly.

“No,” I said, going to stop her, “You’re staying there.”

She gave me a look that was a clear as any look Mary ever gave me – and believe me she had given me many over the years. There were looks that said, “You’re being an idiot but I’m too kind to say it out loud.” There were looks that said, “I love you but you’re in between me and food.” This particular look said: “There is a party going on upstairs; a party that is happening in my honor. There are desserts at this party. There are people I want to talk to at this party. I am going upstairs to this party so you can either help me or get the hell out of my way.”

There are two things that I remember vividly from the experience of carrying her up the stairs. The first is that I bumped her arm on a low overhang. She said “ow” softly but I don’t think it really hurt all that much. Yet I still remember it and have enormous guilt about it. The second thing I remember is that she was heavier than I thought she’d be. She looked as if she’d be light as a feather but she still had weight. I thought, “She’s still here. She is still solid and present.” It meant something at that moment. It meant a lot.

I placed her carefully on the sofa as everyone gave me dirty looks, wondering why I had entertained the foolishness of her desire to come upstairs. I explained the look and everyone immediately understood. They had been on the receiving end of many of her looks over the years.

She ate a bit of a cupcake and engaged in theological discussions with her God School friends. Well, they mainly talked and she interjected here and there, but she was engaged – more engaged than I had seen her all day – and we could all tell it was good for her. At times when all thought and reason go out the window and we are reduced to the basest level of merely attempting to survive to the next moment, being amid high-minded conversation is soothing somehow. An intellectual salve if you will.

I had to go to an appointment to get some work done on a tattoo that was turning out to be more epic than I had really intended it to be, so I gathered my stuff and said goodbye to the group. Mary started to get up off the couch.

“What are you doing?” I asked.

“I want to hug you,” she said.

This time I gave her a look and she got it. She settled back down and I went to her for a kiss and a hug.

“I’ll see you on Thursday,” I said, as that was my day to take a hospice shift so Steve could run some errands.

“Yay,” she said.

The tattoo I was getting was a large tribal design on my arm, chest, shoulder, and back that was made up of words inside the design. So far I had gotten peace, tolerance, chance, family, passion, creativity, courage, integrity, and chance. The words I added that day, on my chest over my heart, were joy, devotion, and commitment.

I had committed to being there at the end for Mary, although to be honest I didn’t want to. I had done it before for other friends during the darkest days of the AIDS crisis, but this was different. This was my best friend. This was Mary. I wanted to be anywhere other than there and yet there was no place else I would’ve been, if that makes any sense.

“Hey dude,” I said as I walked in that Monday morning.

Her breathing was raspy and ragged; a dry rattle as she actively, as forcefully as she could, drew in as much oxygen as she could at a time. The simple act that we do unconsciously was a determined effort for her and the strain showed on every ounce of her. Her skin was clammy with a sheen of perspiration that felt warm and had a vaguely sweet scent to it. I inhaled as I leaned in to kiss her on the cheek and she smiled.

I sat with her as Steve went about calling family – hers and his – and other friends. We didn’t speak, really. She was only aware of her surroundings in momentary bursts at that point so mainly I just sat with her, looking at her, watching her fade as if the exhale of every one of those breaths she fought so hard for contained a little piece of her slipping away.

It was my turn to make some phone calls. I wrote an ugly script and tried to stick to it because anything else would’ve caused me to simply stop functioning.

“Hi, it’s Rick. I don’t think there’s much time. You should come.”

The house filled up rapidly with people. Mothers, brothers, sisters, nieces, nephews, and in-laws. God School friends. The Marymount Girls. The Fat Pack. Back in my less than glorious youth I had been a bouncer at a nightclub and I wound up with that job description again, trying to control who was in the room and when and for how long.

Mary had been very clear who she wanted to be with her in her final moments and the list was short. It wasn’t because she didn’t want the people who loved her and whom she loved near, it was because she didn’t want to cause them any more pain. She knew how hard it would be for those dearest to her and it was obvious how much it took out of her every time someone came to the room. At times she’d recognize them and engage in a few words of conversation, but more often she would struggle both vocally and physically, as if it pained her that she couldn’t engage in witty banter with her friends and family.

So I kept the traffic moving and made sure that anyone who wanted to touch her did so in the right way. Holding her hand or stroking her hair seemed to cause her pain, so we tried to make sure that people only caressed her fingertips or gently put their hand on her arm or leg.

The hospice program had set up a very specific regiment of medication for her – morphine mostly but others as well that had to be put into an oral syringe and then fed to her slowly, drop by drop, like nursing a baby cub. Steve had been keeping track of the times and dosages on a random scrap of paper but I wasn’t having any of that. I went upstairs to Mary’s computer and created a detailed spreadsheet with spaces for the medicine names, exact amounts to be given, and schedules both past and future. In the face of chaos, I need order. Spreadsheets create order. Spreadsheets give me comfort.

For most of the morning and early afternoon I stayed in the room with her, leaving only briefly to use the bathroom or get something to drink. I had conversations with others in the house but I really don’t remember very many of them. I was too focused on what was going on in Mary’s bedroom. Anytime someone would stop me for some bit of chatter, my eyes would dart toward the stairs down to Mary, and while I was polite on the outside, on the inside I was screaming “Stop talking to me! I have more important things to do!!”

Sometime shortly after noon, Mary became more cognizant and when it was just her and Steve and I in the room, made it very clear that she was done. She wanted it to be over.

During her treatment, when things weren’t looking great, Mary had a conversation with her doctor about the end. He agreed to help her and the way she interpreted that statement was that he was agreeing to help her die. So she asked Steve to call the doctor and tell him that she was ready.

The doctor had a different interpretation for that conversation and while it took several phone calls to get to the crux of the matter, ultimately he stated clearly that he would not do anything to hasten her death. He would help her be as comfortable as possible and the end would come when it came.

Telling this to Mary, at least in terms that clearly, seemed cruel at that point, so instead we delayed her, we comforted her, we told her that we were working on it.

Thinking it would be over soon, Mary asked me to get a pen and paper so she could say a few things – some parting words. After struggling to form the words in her head and then trying to get her mouth to cooperate, she said this: “Thank you for taking care of me.”

And I wanted to. There was a moment that afternoon when she was crying, begging to be let out of the body that had betrayed her, that I almost walked over to the bottle of morphine sitting on the table near her bed. I had no idea how much I would have needed to give her but I figured it couldn’t be that hard. Take the dose she was getting every two hours and increase it to every hour, then every thirty minutes. It would be over sooner that way. I wouldn’t have told anybody, I would’ve just done it.

But I didn’t. I castigated myself for being selfish, wanting to keep her around for every moment I could even if she was in pain. I thought maybe I was just chickenshit, too afraid to actually take the kind of bold action that needed to be taken. In the end though, I figured out that it wasn’t something that Mary would’ve wanted me to do. She wouldn’t have wanted me to live with that. She wouldn’t have wanted anyone to live with that.

The house was becoming a bit of a circus with no fewer than two dozen people milling about. Built on a hill, Mary and Steve’s house had the main living room, kitchen, and dining room on the top floor, with the bedrooms underneath and so every footstep, every chair scrape, every voice carried down into Mary’s room. Any noise that was even slightly louder than normal caused her to stir and struggle. It was as if the noise was causing her actual discomfort.

Steve and I agreed that although the end was certainly coming, for some reason we didn’t think it was coming that night so we decided that all the people in the house were causing Mary too much anxiety. It was time for them to go.

“Don’t worry, Mary,” I said, “The Bouncer will take care of it.”

“Why is he doing it this way?” Mary asked groggily but plaintively.

“Because that’s the best way to do it,” I said, which seemed to satisfy her and she closed her eyes again. It wasn’t until later that I realized that she had an entirely different vision in her head of The Bouncer. The Bouncer was the one that was going to end it for her and she didn’t understand what was taking so damn long.

It wasn’t easy asking people to leave and I think more than a few of them weren’t very happy with me, but I didn’t really care. My mission at that moment was to give Mary as much peace as I possibly could. That’s what best friends do.

We got everyone cleared out by 9 or 10 that night and it was just the three of us – Steve, me, and Mary. Since the medications needed to be delivered on a consistent basis all night, we agreed that I would be the time keeper, setting my phone’s alarm to get up every hour or 90 minutes or so to wake Steve. It wasn’t a spreadsheet but it was something I could control.

At eleven o’clock that night, while Steve was in another room, I sat in a chair next to Mary’s bed and turned on the TV to watch “Friends.” Mary and I always joked that you could compare everything in life to an episode of “Friends” but I didn’t remember any that were analogous to this situation. None of the bright, shiny, happy people on that show ever died slowly and painfully.

I went into the guest bedroom shortly after the show ended, first reassuring Steve and Mary that I was there for the duration, whether that was a day or a week. I didn’t ask if that was okay but I knew it was. I knew it’s what she wanted. It was my commitment. I was devoted to her.

But there was no joy.