Monday, September 22, 2014

There’s a little black boy going room-to-room, peeking in and saying “hi!” to anyone who makes eye contact. We love him. I’m back in Quiet Room and I can hear him in the next room playing games on a computer and talking on a cell phone. “WHO DIS?!?” I have to imagine that he lingered outside Marcella’s door for a moment or two while I played her a 45-minute bedside concert.
I played my songs “Knit Hat Girl” and “lets make folk babies,” Neil Young’s “Silver And Gold” and “Razor Love,” The Everly Brothers’ “Crying In The Rain,” “Long Time Gone,” and “When Snowflakes Fall In The Summer,” and R.E.M.’s “Suspicion,” “Sad Professor,” “Electrolite,” “The Lifting,” and “I’ve Been High.”
I played part of my concert in the bathroom that connects to the room. It sounds huge in there. I figured her eyes were closed anyway so I’d go where the good sound is. I wasn’t sure if she was listening, but I just kept going. It had been a while since I put everything else down and just played a bunch of songs off-the-cuff.
The first moments always feel like the first time. Like stepping into a pool and not being sure if the water will be warm, or if I can even swim. Before long, I’m swimming and I can barely remember life on the ground. Phil Everly said he thought of music like a river. Nobody owns it, but we can all flow down it.
Grieving seems cyclical for me. Today, I’m tired of heartache. Tears depleted. The pendulum has swung. Now, I’m reading a lot. Making plans for recording music. I’m in Me Mode.
I missed my train so I have a bit of time to observe Suburban Station. I think the man sitting across from me with a similarly well-dressed woman is an MSNBC anchor.
During the train ride here, a man named Fran sat down next to my guitar and I and decided to strike up a conversation. He got on the train in Bristol. I’d gotten on in Tullytown, just one stop earlier, but my appearance had him convinced I was from New York City. Fran is a recovering alcoholic with twenty-two years of sobriety. He has the exuberance and lust for life that I’m drawn to in Craig Ferguson. I was craving the silent meditation of a train ride, but I remembered “there’s nowhere you can be that isn’t where you’re meant to be” and entered the moment.
I’m beginning to feel like a guy with a story. To quote my ex-girlfriend Megan, “I’ve LIVED.” I told Fran some of my story and he told me some of his. He told me he is a Buddhist. He told me he believes our life in the waking state is almost as much of a dream as our life in the dreaming state. He believes Marcella’s energy will be with me even after she’s not in a body.
Aunt Laura and I ate lunch together. We reflected on the difficult week we’d had. She shared an anecdote about Marcella taking her to her favorite tree. I told her I thought Marcella might have photographed me laying under it once. We both shared super-dark, morbid jokes that Marcella told us post-diagnosis. We agreed that we didn’t know if they were tragic or hilarious. Then we laughed. I guess that’s what survivors do.
I walked past some beautiful stained-glass windows glowing into the evening air on Lombard Street and I reflected on death and people’s attitudes about it. Humor seems to be one way to tell death you’re not afraid of it. I titled my recent self-portrait “first let me take a hospice selfie.”
Fran and I talked about the way that you have to open yourself up enough to feel true pain if you want to feel real joy. Not bad for a conversation with a stranger on a train, right? Plus, they somehow forgot to ask me to buy a train ticket.
The next morning, I emerged from the underground under grey skies in a sketchy part of town and had no idea how to find the subway. I had an urge to tell the world how angry I was that the conductor made me get off the train four miles from my destination because I was $2 short, but I remembered that I hadn’t told the world how HAPPY I’d been about the previous day’s POSITIVE transit experience. Immediately after having that realization - as in, during the precise moment when I could’ve been whining on social media to the benefit of no one - I noticed a beautiful scene I wanted to photograph. The exercise in positive thinking continued as I entered the appealingly decrepit subway station and found something to photograph in practically every corner. Twentieth century mass transit artifacts withering away in 2014. My camera ate it up.
I hadn’t planned to be here today, but I got the word that there are signs it could be the last day. I can report to you that the mood is as heavy as you’d think it would be, but that there is also much more laughter than you might expect. Whitney is telling stories of her college days with Marcella. One of the family members is fighting off accusations of being a loud snorer. We’re taking turns telling stories of Marcella’s stubbornness.
She had a post-diagnosis birthday party. The house was FULL of people. There were mountains of food everywhere, including an entire room of dessert. She asked if there was any french onion dip. She was astonished that there wasn’t and DEMANDED it be purchased immediately! It was perhaps the only food available in North America - or Italy - that was not already at the party.
Whitney said Marcella wouldn’t let anyone sing along to Andrew McMahon songs on her car radio because she didn’t want anyone to ruin them. It was her time alone with Andrew. We played her some of his songs on her iPad today.
Her mom, Cleo, spoke of the endless reserves of energy Marcella would tap into when she wanted to get her way. Absolutely NO backing down, EVER. Her other kids would eventually acquiesce. She wouldn’t. I told her I saw that side of her when I spent three months being wishy-washy about getting into a formal relationship. She decided she was gonna have me and she got me. I imagine my stubbornness drove her out of her mind at times. I suppose she met her match.
The unexpected hug from out-of-the-blue on Tuesday night could prove to be our last interaction. I told her I was about to leave to catch a train and she reached out as if to say “no, no, no!” It was followed by our last reciprocated kiss. So far. I will go into the future and see what happens there.
I’ve been fortunate to have made it here five of the past six days. I am finally cancelling rehearsals, gigs, nights out with friends. I maintained a balance for the first seven months. Things are different now.
It’s a long goodbye. More than half a year so far. What kind of goodbye is best? A lot of people got to tell her how they felt about her and that she heard them loud and clear. That’s huge. New memories were made. She’s probably already inspired thousands of people with her braveness. She’s raised about $35,000 to research the rare disease that disrupted her life so many times.
Cleo told a story of Marcella as a six-year-old. They have a gorgeous, acoustically vibrant foyer. Marcella’s bedroom was to the left on the second floor, her parents’ bedroom was directly across. Both had Juliet windows facing the foyer. One night, she finally had enough of her dad’s snoring so she marched into the bedroom and screamed at her mom, “TELL YOUR HUSBAND TO SHUT… UP!!!” She always got what she wanted.
One day, while giving her a wheelchair ride around her family’s long, winding driveway, I wrote my most terrible song ever. I sang this into her ear today. It’s so terrible that I was hoping it would cause her to regain full consciousness and slap me. Didn’t work. But I tried. It’s meant to be sung by Ini Kamoze.
CHELLA CHELLA CHELLA/CHELLA CHELLA CHELLA/CHELLA CHELLA CHELLA’S/GOT A DOGGY NAMED STELLA/STELLA STELLA STELLA/STELLA STELLA STELLA/CHELLA CHELLA CHELLA/GOT A SISTER NAMED DANIELA/‘IELA ‘IELA ‘IELA/‘IELA ‘IELA ‘IELA/GO TELL ALL THE FELLAS/IT’S CHELLA CHELLA CHELLA/I’M JUST TRYIN’A TELL YA/IT’S CHELLA CHELLA CHELLA
She didn’t respond. I don’t just mean tonight; I mean last month when she WAS speaking. It’s that bad. Maybe her lack of speech is a protest against that song?
I could have stayed at the facility, but I opted to come home so I could take a shower, floss, say hello to my cats, put some money in the bank. I’ve had one Dogfish Head Namaste beer in my fridge for about two weeks. I think this is a time for sobriety. The mind has a way of slowing itself down during times of grief, anyway. I’m giving myself the full experience. It’s a sad situation but it’s also a opportunity to get a crash course in parts of the human experience that I don’t really know about. I want to learn more about life by learning more about death; the only thing, I remind myself, that EVERYONE will do.
My friend Righteous Jolly reminds me, “it will be past tense, but what you express won’t.” I am writing a lot lately for my own well-being. Other people have been responding positively and it’s a great thrill. To my amazement, through my writing, I’ve impacted other people going through crises and helped them with their own grieving process. I don’t know what to make of that yet. Maybe I have been writing a book this whole time?
I’ve gotten into the habit of talking to Marcella as if she’s listening. It’s conceivable that she is. I tell her about the walks I take around the city. The photos I take. I told her I treated myself to some medicine of my own - gummy bears.
I felt a little sick to my stomach as I thought about leaving for the night, so I tried to think of something to say, in addition to “I love you” that would be an acceptable final message to her, just in case.
I told her, “you made me a better person” and kissed her on the head.