Tag Archives: death

No This Without That

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“What you doin’, Mama?” Carlos asked as we sat by the tadpole pond.

“Smacking mosquitos!” Then in my mind I hissed, “Take THAT, assholes!” as I smashed two in one stroke.

“McSkeetos bite you.”

Aye, laddie, they do. I am “sweet-blooded” as Quicker used to say–a mosquito will bite me before anyone else.

The weather has been absolutely perfect the last couple of days, but I don’t spend much time outside enjoying it. As our tadpoles have grown in the brown water of the old sandbox, so have the mosquito larvae. Can’t kill one without killing the other, so our crop of baby frogs has come hand in hand with a bumper crop of blood-sucking mcskeetos (kudos to Carlos for his pronunciation) this fall. I can’t wait for the first freeze to knock them out, but it might hurt Lieutenant Dan’s Frog Brigade also.

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I love watching the tadpoles grow and nibble and hop, so for now I have to put up with the cloud of mosquitos. There is no this without that.

So instead of sitting on the deck under the red leaves of the sourwood tree to have my wine, I sit inside. In this raggedy, cluttered den where Vivi is reading a Hardy Boys mystery and singing “Mama Mia” with the wrong lyrics: “Mama Mia, here we go again…my, my, just a little longer.” What the hell? Clearly, I have failed as a parent if my kid doesn’t know the words to basic ABBA songs.

There is nowhere to go in this house for a moment’s peace on a night when the kids are in moods. It’s all slamming doors, sucking fingers, and even refusing to eat tater tots. What four-year-old doesn’t eat tots? Mine, apparently. Mama mia.

After his tater tot tantrum, Carlos called me back to his room where he sat in the middle of his big boy bed that Papa made before Vivi was born. “I not mad anymore. Can I come out now? Hug?” Of course you can, my love. Tantrums and tenderness–there is no this without that. I could have a clean, peaceful house without all these kids running around…but I wouldn’t have these kids running around.

Now, when I look at that bed, I feel the new sinking hole in my chest where my dad’s death has taken up residence. I remember how excited he was to make the crib. I told him I liked quarter-sawn oak and Mission style and he was off to the workshop with wood-working magazines trailing like a cloud of dust behind him. It took months to finish the curved headboard and the narrow slats. He made extra rails so it could convert to a bed. Then he got so mad when Big Gay made him paint that beautiful oak white to match the other furniture in the nursery. And the day they hauled it over here–Daddy dropped it while loading it in the truck, scraped up the paint and was still cussing mightily hours later when they got to our house. He brought along the can of paint so we could touch up the black scrapes before the baby got here. Even after all that, we got the bed in the front door only to discover that it was too wide to make it into Vivi’s nursery…so he had to take the whole thing apart after all then reassemble it. We managed to laugh about it that day. And I’ll manage to smile about it one day when I remember. He wouldn’t have had the joy of seeing his baby grandaughter in that crib without the frustration of making it for her. There is no this without that.

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At the memorial, a friend asked me how I talked to Vivi about death since I don’t believe in any kind of afterlife (other than a general conservation of energy where we get to return to being sunlight or a nice October breeze–we are all part of one organism). I told her, “We have told her her whole life that all living things die. Our bodies are machines that wear out. Dying is part of living.”

In other words, there is no this without that.

Green Bananas

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In the strange ways of the world we’ve created online, I am sad tonight for a friend I’ve never met. We know the same people and we chat on Facebook. I’d recognize her if we passed each other in the street and I’d stop to hug her neck. She’s good people.

She’s saying farewell to her beloved grandfather. His body is worn out with living and he’s ready to go. He is safe and comfortable, wrapped up in love. His records play softly on the stereo. His girls have propped his favorite photos by the bed and tucked him under a warm quilt. Tended quietly by the people you love, the people you created–that’s the way to finish.

His ending hasn’t been a surprise. A few weeks ago, he answered a question about the future with, “Aw, honey–I’m too old to buy green bananas.” That joke says so much about how we have to live. We have to live with the hope for tomorrow–the green bananas. We invest then have to wait a while for it to sweeten up. We start out tough and grow softer as we have less time ahead of us.

Watching from the sidelines as Kathryn lives through these strange last hours makes me feel peaceful that Richard died at home. That I tended him. We could have fled with his failing body to the hospital and handed this frightening responsibility over to people who knew what they were doing, but we stayed at home. We might not have known what we were doing, but we knew how to do it. Gently, with great love. Fearlessly, with great courage.

That’s the same way we raise children or save our own lives or try to change the world. Gently, fearlessly, with love and with courage.

So if you are the praying type, whisper one for those who are saying goodbye, from both sides of the door. If you are the loving type, send a little more love into the world today in honor of a grandfather who sowed love and reaped love. I’ve never met him, but I’ll miss Mr. Thomas “Buddy” Ballew.

Here’s a video of a beautiful song about accepting when it’s time to say goodbye. It’s called “On Your Way” by East Mountain South. The story is of a man realizing what a mess he’s made of things with his woman. He’s wishing her well, sending her on her way–even though she’s already gone.

…so let his heart surround you, and let his arms protect you
and hold you every morning the way that I could never do
another life has blessed you, he wants the same as you do
so I must find the courage to send you on your way…

In Another Life, 46.

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A few months ago, I wrote a piece about the circular nature of grief (A Tuesday Kind of Miracle). When we lose someone, the path through grief is a looping line, not a straight one. As the years pass, the loops become smaller and spaced further apart. I ran headlong into one of those loops today and that’s how I found myself sitting at my desk sobbing into a Kleenex…all because of a typo on some paperwork. Or maybe it wasn’t a typo. In some world, it might be true.

It’s been eight years since Richard died. I’ve slogged through the months and months of estate paperwork and had it all settled. I hadn’t looked at that brown accordion file in years. Nevertheless, at the end of 2012, I got a big envelope from the university where he had taught. I inherited one of his retirement accounts, but I didn’t bother to open the envelope because all that was SETTLED. I got another envelope…put it in same dusty stack. (I know, I know, I know) He ended his career as a professor of finance, so both of us had great retirement plans and aggressive commitments to our savings. So I already had and have “My Own Money.” When this account came to me after his death, I kept it separate for tax purposes and viewed it as my super duper safety net, a sad windfall. Whenever the financial news got me scared, or I had a bad day at work, I would pull up that account online and take a deep breath. That money was an extra egg in the nest.

(TAKE HEED: If you ever inherit a retirement account, DO NOT roll it in with your own funds. If you ever have to take money out in the event of an emergency, you can withdraw from the inherited account at a much lower penalty rate.) (This message brought to you by the ghost of Richard A. Grayson, MBA, PhD.) ‘

Well, one day after the beginning of this year, I was feeling kind of blue so I logged in to the account to cheer myself up. The balance was $0.00. GACK. The image of those big white envelopes from the university came racing back to mind Might have been a good idea to look in there! I’ve had other estate related glitches (like the letter from the IRS that said I owed $86,543.78…that was a sphincter release notification). I calmed myself down pretty quickly and opened the damn envelopes. Yep, the university had switched investment management companies and I was going to have to do the paperwork ALL OVER AGAIN.

Damn it.

It took me a month to call Investor Relations. Another month to fill out the Beneficiary forms. Another month before I made it to the bank for the fancy Medallion certification stamp (who knew?). Seriously, I haaaaaaate this kind of paperwork, even if it puts me back in my safety net. ARGH. Hate it. Hate it hate it hatey hatecakes.

Now it’s been a couple of weeks since I mailed all that stamped and certified stuff in…and I get another white envelope in the mail. I took it out today and opened it up to read that they need a copy of his death certificate. Sigh. While I was bracing myself to open up the big brown accordion file to find a copy of that clinical green document with Dr. Marrano’s signature and all those dates and codes and finality, I skimmed over the letter from the investment company. I was listed as the primary account holder, with all my information as I had entered it on the forms. Richard was listed as the secondary account holder. And for some unknown reason, the form listed his age: 46.

He died at 38. He’s never going to be 46. Not in this world.

My late husband is growing older.

Thus the sobbing. 46.

For the first few months, maybe years after he died, I sometimes thought I caught a glimpse of him in crowds. He was distinctive looking–5′ 4″ tall with reddish hair, an Irish tan, broad shoulders and a narrow skier’s butt. His body was beautifully proportioned and compact. When we hugged, he fit right under my chin. So if I was in a crowd and saw out of the corner of my eye a body shaped like that or a russet haired man with a bouncy step…I kept looking, out of the corner of my eye, and I pretended that it was him. It was a way of hanging on to the notion that he wasn’t really dead, just NOT HERE. I don’t believe in a heaven where this that is “I” and that that is “you” remain. I believe more in the conservation of energy and the way our selves remain part of the great equation of the universe but not in any distinct being…but it will never be mine to know. I do know that when you have to wake up one day into a world that no longer is home to your beloved, it’s easy to pick out pieces of them in a crowd and let your brain relax into the fantasy that they are still somewhere nearby.

But to think of him as 46? Right there, in black and white on a form. Stomach punch.

I once found myself on a train across Canada with the Cowboy Junkies and some of their favorite singers and songwriters. One of them was Fred Eaglesmith–his song “Crowds” speaks to me when I think about Richard being 46, somewhere:

So I look for you in crowds
In train stations and bus stops
On sidewalks in the middle of the night
When I go driving by
Little churchyards on Saturdays
I check to see if you might be the bride
Hope you’re happy now
I still look for you in crowds

Forty six. In another place, maybe, another life. In a parallel universe, he is 46. And maybe now and then, he misses me too.

It’s All One Life

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Black Eyed Susan in Baltimore’s Inner Harbor

One sunny Sunday afternoon in November of 2004, Richard and I took a walk down to Fell’s Point in Baltimore. We sat on a bench by the harbor and watched the gulls dip and dive around the trash cans. A bright white paddlewheel boat–The Black Eyed Susan–rocked against the dock. I told him how the flower, black eyed Susan, always made me think of Van Morisson’s “Brown Eyed Girl.” I sang the chorus.

A pack of Cub Scouts climbed up to the bridge to ring the brass bell. The sun was warm but weak. I was glad for my jacket. The boys rang the bell then chased each other down the ladder to the deck then the dock then across the brick courtyard behind us. The sunlight sparkled off the diamond engagement ring that Richard had given me a few months before. His grandfather Jack had given it to his grandmother Sadie in 1927 and she had worn it for 75 years. Now he had given it to me as a sign of his trust in our commitment to each other. We held hands and I remember thinking, “I’m really happy, right now. Right here.”

Then a phrase entered my mind and it stayed with me for years: “It’s all one life.” It’s all one life.

Here’s the detail that’s missing from the scene I’ve described above. Richard was feeling pretty good that day after his third round of chemo, but it hadn’t put him into remission. He told me a half-truth that week, so as not to break my heart with disappointment and fear. He said his doctors were calling it a “partial remission.” It didn’t take.

We left the safe confines of the guest house on Johns Hopkins campus to walk down the hill to the harbor on a sunny day. It was the first walk we had taken together outside in months. I worried most of the way that his energy wouldn’t hold out or that we might need to find a cab to bring us back up the hill. For years I had chased him all over Europe on our adventures together but now I was shortening my steps and slowing my pace so he didn’t tire too quickly.

Sitting there in the sun that day, I had a sense of wholeness about the whole situation. For once, I wasn’t piecing it apart into the parts I accepted–the love we felt for each other, the joy of rambunctious kids, the autumn sun, the promise of a boat–and the parts I fought against–leukemia, chemo, guest houses, unknowing, weakness, change. I had space in my heart and my mind in that moment for all of it. It’s all one life.

Before that day, the mantra “it is what it is” had been helpful, but I could only use it as an antidote for each piece of information, each separate challenge that came our way. It was a one thing at a time kind of mantra. “It’s all one life” was a rare expression of wholeness and acceptance in that chaotic time, when every day, hour or minute might bring with it some blow to our life together.

After he died, I wondered, “If you could do it all over again, would you?” My answer was yes. Even with the horror of that year and the emptiness after he was gone, I wouldn’t have traded the good times in exchange for missing the bad. To quote Garth Brooks, “I could have missed the pain, but I’d have had to miss the dance.” Or with Fartbuster, after our divorce….I asked myself if I would have been better off never having married him? These are impossible questions because changing one thread of my life would have put me somewhere else and I wouldn’t have heard the Cub Scouts ringing the bell aboard the Black Eyed Susan as Sadie’s diamond sparkled in the sun. Even if my beloved was dying beside me.

“Domino Sugar Love” by Andreas Kollegger via Creative Commons license

It’s all one life. I couldn’t have been the mother who looked into my first born’s blinking eyes and whispered, “Hey! I’ve waited my whole life to meet you!” if I hadn’t been the woman who brushed his eyes closed after they had left this world to look upon some other. It’s all one life. And I’m glad it’s mine.

“You Keep Going”

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It’s turned into “Spencer Week” here on Baddest Mother Ever. That’s the cool thing about writing my own blog–I never know on Monday where I will have written to by Friday.

One of his friends told the story of a time Spencer brought an actual Tony Award to work. He went from office to office and had each of his coworkers hold the award…so that they could then hand it back to him and he could practice reaching out for it and cradling it while he said “Thank you!”

Thank you, bright boy, for these words you left with us. Click on the photo to hear Spencer’s own words about what it’s all about.
Spencer Interview

This next clip is from the memorial service. It includes the above footage of Spencer’s interview in the documentary followed by an emotional performance by Kathryn Kitt of her brother Tom’s song “I Miss the Mountains.” The song is from the Tony Award winning musical “Next to Normal.” It’s sung by a woman who’s living a “normal” life thanks to mental health medications, but she misses the highs and lows of her old life.

But I miss the mountains
I miss the dizzy heights
All the manic magic days
And the dark depressing nights
I miss the mountains
I miss the highs and lows
All the climbing, all the falling
All the while the wild wind blows
Stinging you with snow
And soaking you with rain
I miss the mountains
I miss the pain

As Kathryn sings, a photo montage of Spencer’s life plays in the background. I must have been sitting by the sound guy because I can hear myself laugh at a couple of points. A couple of sobs, too.

Spencer Cox – A Celebration of Life – Kathryn Kitt Accompanied by Tom Kitt from LIPTV 5 on Vimeo.

Eight Million to One

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Yesterday, I told the story of the chalk portrait of Spencer Cox, drawn with such skill and love by Jose Luis Silva. I’d tell you where to find it so you can see for yourself, but it’s already gone.

Why sweat over art that will be washed away before you lie down to sleep that night? Why write stories and fling them into the digital winds? What remains of the work we do?

I am a storyteller (genetically, historically, unabashedly) so I tend to attach roles to the people in my life. (You’ve met Fartbuster, right?) Spencer was “the AIDS activist.” I know other people who are HIV positive or who have AIDS, but Spencer was “my friend who lives with AIDS.” I remember where I was sitting back in the early 1990’s when I heard the news that he had the virus. I was sitting in a dainty mahogany armchair with Queen Anne legs, mother of pearl accents and a pink taffeta seat that my mother had covered with scraps for my graduate school apartment. That was the same year that Arthur Ashe revealed he had AIDS. So Spencer was dying, then. I filed that away. I hadn’t seen him since college. I didn’t see him again for years.

Then came the 20th year since we all met at the Governor’s Honors Program in 1985. We had email by now and a reason to get back together. I had a freshly broken heart from the death of my husband from leukemia. Spencer knew a lot about watching people die, so we began to talk about grief and surviving and getting back to living. I remember a time when he compared grief to the silt at the bottom of a lake–sit still and it will clear, let it sift down and you will see the glints of gold. Grief will rest after a while. Mud distills into gold. He didn’t make it back to Georgia for the 20th reunion, but we were connected again and I was grateful for his wisdom about dying. And I was grateful that he was still alive. I had no concept of how much he had done to make life available to people living with HIV. Really, no idea. I thought he was a fundraiser or something in New York and wore an ACT UP t-shirt on weekends.

Then came Facebook. The years collapsed into nothing and we were all back together again. My Vivi stories convinced Spencer that they were soul mates and he looked forward to serving as her Auntie Mame. We got together a few times and I joked that he was the only friend of mine who doesn’t get a lecture about quitting smoking. He barked out a sooty laugh and said, “The cigarettes will NEVER have time to catch me!” Oh, how we laughed. Twenty years and he was still here. I told him that he was the most interesting person I knew and he snarled, “Jesus, I’m a 40 yr old man who lives with my mother.” He was 43, by the way. What a luxury, to outrun AIDS long enough to lie about your age!

We did get to praise Spencer’s work before he died–there was the movie, the Oscar-nominated documentary “How to Survive a Plague.” We who had loved him at 16 began to learn what a giant contribution he had made to the fight against the plague of AIDS. Spencer had always been larger than life and now he was getting to tell his story on the big screen. He changed his Facebook name to “Spencer Squeaky Cox” after meeting Sarah Jessica Parker at a showing of the film and deciding that he needed a catchier triple moniker. He was so alive in those heady days of interviews and panels and premieres.

I knew it was bad when I didn’t hear back from him for a week. Then I got two phone calls at work within minutes–Bryn and Debra. I answered the second one because I knew. He was gone. I didn’t have a “friend with AIDS” anymore.

At the memorial in New York, the eulogists spoke in chronological order: his brother, his GHP friends, a college buddy, early NYC friend, ACT UP comrades, his ex, his broken-hearted and furious apologist. Spencer’s magnificent work unfolded before us. I couldn’t wrap my mind around it. The video tributes from Anthony Fauci, Anderson Cooper, Larry Kramer–talking about that boy I met in Valdosta. Tony-winning composer Tom Kitt played the piano as his sister, Katherine, sang “I Miss the Mountains” and I sobbed.

It began to sink in that even as Spencer was gone, there were people in that theater who were alive today because of him. The face of AIDS that I had attached to one person in my life was all around me. Many men who sat there in the light from the stage and nodded with an understanding that glowed from their sharp cheekbones and careful eyes. Spencer’s drive. His passion. His pig-headed genius. He did it. He got protease inhibitors pushed through. He found a way to fight the plague.

I heard the eulogists say “eight million people are alive because of Spencer,” several times but that number is so large that it is impossible to envision. Then the man sitting beside us turned and said, “I’m one of them.” Eight million people living. One man, living. I could touch this man. I did. Not a handshake or even a hug. With some reflex that came from deep in my heart and overrode all my polite training, I reached out and stroked his fine cheekbone. I cupped his aging face like I was his mother. I wanted him to know I was happy he was here. Eight million….to one.

Dust to Dust

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On Saturday morning, over 800 artists met under the live oaks in Forsyth Park to draw. Each artist was given one square of sidewalk, one box of chalk and three hours–the rest was up to them. The Sidewalk Chalk Festival is hosted by the Savannah College of Art and Design, so the quality is astounding. Undergrads, grad students, high school hopefuls, alumni, faculty all drawing their hearts out as we stroll by or picnic on the grass. In the mid-afternoon, judges judge, prizes are awarded, thousands and thousands of pictures are snapped. Then as the sun sets, it’s all washed away. It’s just chalk, after all. early portrait

Jose Luis Silva spent the day drawing a portrait of our friend, Spencer Cox, who died in December. Luis had been working on the portrait for an hour when we showed up. The grinning mug that he had summoned to life there on the sidewalk was already stopping traffic. People paused silently to watch him work with just black chalk, white chalk, his fingers and a watery brush.

Luis paused long enough to share hugs with me, with Brantley, with Jill. We three had loved Spencer when he was a bold boy at Governor’s Honors and again as a wizened man. In the interim years, most of us were unaware of Spencer’s work to get AIDS drugs approved by the FDA. He had disappeared on us during those New York years. At his memorial in January, many of Spencer’s dearest friends had commented on his chimeric habit of disappearing, of slipping away then reappearing years later. We started saying goodbye to Spencer when he was diagnosed with AIDS in the early 1990s. Hell, Spencer was supposed to have been dying for twenty years but he never did. Then he did. It was hard to believe he was gone gone.

Thanks to the work that Spencer did to get protease inhibitors approved by the FDA, eight million people around the world are living with AIDS today. Living. Today. Yet he’s gone. I can’t find words for the….irony? Pathos? Tragedy? I can’t, so I’ll quote from Peter Staley’s eulogy, “Grief Is a Sword”:

Eight million people on standardized regimens. Eight million lives saved.

It’s a stunning legacy, and so bittersweet. How could that young gay man, confronted with his own demise, respond with a level of genius that impacted millions of lives but failed to save his own?

This death hit us hard. We have grappled to make sense of it. Why did he stop his meds? What role did his struggle with crystal meth play? Was this a failure of community? Are there lessons we can learn?

The first lesson for me has been about impermanence–Spencer is gone. Yes, it was complicated. Yes, he did great things with his genius. Yes, he did horrible things to his health. Yes, we can learn things from his life. Yes, there are things we will never know. No. He is gone.

But there he was again, emerging from the sidewalk beneath Luis’ fingertips. Luis drew the figure first. Then he added texture to the shirt and the hands. He added highlights. A couple of strokes from a stick of chalk and the distinctive patch of white in Spencer’s beard came back to us. A little bit of chalk dust and there was my friend.

When he was diagnosed with AIDS in his early 20s, it seemed foolish to dream of living to 30. Miraculously, he made it to 44. It was still miraculous for a man with AIDS who had survived the plague years to die at the advanced age of 44; it was still tragic for a man in this day to die of AIDS at 44 when drugs are able to offer many more years.

Luis surrounded his black and white portrait with a vibrant pink and purple background. Colors are never as simple as “pink” and “purple.” It took yellow and brown and gray to make the pink and purple work.

He added Spencer’s name and the years of his birth and death in the top left corner. That’s when the passersby started asking each other, “Who is that?” In the top right corner, Luis added a red ribbon for compostional balance. Once they saw the red ribbon, fewer people asked who Spencer was. Oh, AIDS. Another one bites the dust.

The dust. Saturday’s weather couldn’t have been more pleasant–warm spring sun, dappled shade, light breeze. Even in that idyllic climate, every motion–from the breeze to the sighs of careful crowds–took its toll on Luis’ creation. Near the end of his three hours of allotted drawing time, he turned to me and said, “That’s the thing about chalk. I use the water to make it stick better, but the face is already changed from when I drew it. Just in a few hours.” His hand fluttered between the photocopied picture of Spencer that ran with the New York Times obituary and the chalk portrait there on the ground before us. Chalk art changes as you make it. It can’t be anything but impermanent.

When Luis declared that he was done, we sat under the oaks and we didn’t talk about Spencer. We played with the tired baby. We drank beer and iced coffees. We sent the big kids on errands. We packed up and headed home at a sensible hour, like grown ups do.

I wonder what it would have felt like to stay there until the park emptied out and the cleaning crew came through with their hoses. I wonder what it would have meant to me to watch that patch of white in Spencer’s beard wash away into nothing as it joined with everything around it.

An artist creates a portrait that changes as he draws. A musician plays a note that fades at the same instant it is born. Eight million people breathe in; eight million people breathe out and the dust shifts around them. Before we can know a thing, it has moved on.

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