How to say?
Has been repeated over and over, embedded in me since my trip to France. I was on the fringes of Paris. I was not in a fancy hotel with English speaking hosts. I was with an older widow, French born-and-raised.
Her name was Colette and I will change some things for her privacy. Collette once had a husband and a handsome son who climbed mountains. He was not just handsome, he was a noble man. He fell in love with a woman who was left by her husband when she gave birth. But he loved her when he saw her and he knew this was meant to be. He raised the boy like he was his own. He was happy.
That's what I get from the before pictures. His lover with her l’enfant, now his as well. Happy and mountains and muscles and tans. He stayed for ten years until there was no more choice. Something would blow, explode in his head. How to say? Aneurysm?
He would instantly change from a rugged, long-haired, olive-toned mountain-climber, to blind and paralyzed. She would leave with the child who was as much his as anybody’s. Pierre would retreat into his darkness, no eyes, into his leglessness and his home. Abandoned, except for Colette.
My host just moved him from his home into her apartment building when I visited. He now took the apartment downstairs. “How,” I wondered, “Did he fucking get on that elevator? How does his chair fit?” My mind kept fleeing frantically back to my beginning in Paris, and freaked the fuck out, sweating pondering such a feat. How did anyone live with a disability here? I felt lost and alone without my husband and my MS has so far, left me still able to walk.
I see my host now with a certain compassion, even though she rushes me when I am peeing, which is hard. The signal is no longer perfect from my brain to bladder. The lesion on my spine hits it directly. I must think, but not too much. That is just my reality; that and I always have to pee. A detail my host can’t seem to grasp. This fascinates me. She can grasp the before and after pictures of Pierre, but she cannot understand that it takes me some time to pee?
“It’s okay,” I remind myself as the pity floods for them both. As long as I can grip her son, the darkness downstairs, through the lift, I can feel for her and let the petty stuff go. I didn't shower for close to five days for fear of upsetting her. I understood.
Pierre won’t let me visit and I understand. And so I close my eyes and try to feel my way to his sadness. The depths to which cannot be contained, or explored, but something in me always tries to “go there” when it comes to people, even if it means sacrificing myself. Emotions cost me. When I am flooded, my right leg goes numb, paralyzed-like. I must calm down. But him, this stranger. He may cost me a leg, but I know he is worth it. SOmething in me wants to climb a mountain for Pierre. Emotionally, something in me always will.
I hurry and flush the toilette and stop thinking too much.
France is considered very progressed in terms of disabilities and understandings etc. I look fine and I was fine, but wheeling my carry-on bag, with my computer bag, with my purse across my body, was hard. What if I was him? I am on the upper echelon of being able to move now, perhaps I am compromised right before an infusion, but I can move. But France, moving here with all these bags was hard.
"Little space," Robert (Roe-bear) would remind me.
"Much smaller," he’d say.
But I think of Pierre and the people like us, like him, whose worlds are now so much smaller after something happens, after his head explodes, after he raises her son, after he is a good man who climbs mountains. The thought, it is too much, my leg is disappearing. I must not think about it now.
They pushed me down the stars and gasped, exaggerated that I was slow moving. They brushed me away and yelled (how to spell such guttural sounds), “Oooouuuhh….uuuhhooooo?” And these were the men that worked at the airport. These were the ones paid to help.
When the man in customs yelled, “Gimme!” as I handed him my passport and tried to catch my laptop that was falling out of my bag I fully understood, I was no longer home, I was entirely alone, except for one small soul who loved mine and was praying for me across the ocean. There were many souls routing me on, but Tony's was the other part of mine. If I perish, a part of him perishes. I am the left. He the right. Forever changed if one side of the bed is gone, one hand.
Tony knew how scared I was. He knew the depths. I don’t leave my garden really, or my life. I have a zone that I cling to. I don’t go far. Understanding where he was, and how he willed for me to win, only made me feel deeper, sadder. I was deeply alone. That, and I had never considered-I haven't traveled this far since my diagnosis without him. I was traveling now with a disability, without anyway of communicating. It was Paris, beautiful Paris, but Paris is hard if you are sick and cannot walk.
I did not speak French. I had no phone. This was not an airport like Newark International where wifi and charging kiosks were as common as the cracks in the linoleum. This was sparse and reminded me of Berlin years ago. A very faded Carolina Blue, one, lone off-white, dirty white plug. Nowhere to access wifi. I couldn’t even try my computer to communicate. I felt lost, and my body was bonking. It could not quit on me, not like my friend. Don't leave me like he left me. I just willed it to stay with me, just a little longer.
Side note: Later I would find out the OTHER side of the airport (domestic), the part I would see on the way home, would look much more glamorous and evolved and not so alien to me. It felt friendlier.
My car didn’t show up. Two hours, standing up straight, clutching my bags, white-knuckling it, trying so hard not to unravel. “Just stand still and wait. Still and wait. Look at the people, how different they are. And wait”.
No phone. Just a few sentences on the page my husband printed. “Intercome Henroit”, but first the code. I read it so many times, I clung to it like my life depended on it. After 2 hours of standing, my leg getting that sensation, telling me it is done, and a day of traveling, I headed to find a cab. That didn’t feel like such a simple task. It was different here. I had to find the place for taxis, wind around and wait in the rain for the next one. I prayed my driver would understand me and took, what I thought, was my place.
And I did and he did. After a 15 minute-drive, he dropped me near a gate in the pouring rain. He spoke minimal English, but he was kind. I could tell he wanted to communicate with me, help me. He could see the SCARED in my eyes. He was gentle with me, and I with him. I tipped him graciously and he asked if I would be ok on the curb, in the rain. Did I know the code? I knew where I was going? I wanted to say no and explain that it was complicated and life is complicated and I’m on someone’s watch and I can’t live my life AFRAID anymore, not since Danny, not since everyone started passing. I had to LIVE. This fear was me living…”
Oh it was far too complicated for his English, and my French, at THAT moment, and I am way too honest. So I just nodded a reassuring yes and swallowed like a school girl would to her dad on the first day of school. I tried not to watch him disappear, but my gut pulled and twisted when I saw the last hint of hope in his tail light …fading…fading…gone. Again, I could taste what came up when the man at customs yelled, “GIMME!”
It was almost like that and the feeling fell out of me, like my laptop and that emptiness, and that bag, and the stamp on the passport, it echoed…alone.
Alone from everything I knew, except this fear. It was fear that could stop me from coming to Paris, or it was fear that would accompany me. The universe let me choose, and we chose to go together. Hopefully, for the better. For better, or for worse.
In the end I figured, “Might as well go together and see something, perhaps change something. Or I can stand here and pretend that by standing, frozen in fear, that I am DOING. That's crap. ” Ah, but the fear, always there despite an understanding of what needs to be done. I do lots of things lately despite being afraid. Something in me knows I no longer have a choice.
That said my leg was still there reminding me it was done, it needed me to lay down and raise it and rest. Just then, the heavens opened up like I have never seen, and a cold fall rain during this summer day, fell. When I left Newark it was 92 degrees and humid. Here it was monsooning and a 40 degree equivalent when converted to Fahrenheit. Under the weight of the rain, and the risk, and the hours or TIRED and then hostile, my 105 pound frame shook. It took all I had to code in and get the wrought iron gate open, my wheels stuttered over the lip of the gate. I don’t know how I did, but I did it. How do the disabled do this all the time here? My heart went out.
But a gate is just a gate. She said to intercom her name. That is the equivalent of my mother-in-law instructing me to come to her living community and holler for her when there; buildings upon buildings, intercoms upon intercoms, floors upon floors. A small black boy on a scooter came by and he was smiling like the sun, enjoying every drop of rain and I wondered first, “Why can’t I be like that?” and then practically, “Does he speak English?” I rushed to him (as much as I could) to ask for help.
He smiled and nodded as I showed him the print out in English, “Non. Pardon.” he responded. He was very polite, but I deflated once more. This happened with several people walking in and out, in hurries to wherever their lives led them, so different from mine. I found solace in thinking that at one point during eternity, our paths did cross-I liked the thought. It made them feel more like home and less distant.
Yes, I am home, with Tony and the babies and my flowers and Daisy, my faithful companion. Lazy and at my feet, keeping them warm. My body shook as I was reminded I was not, nor was I entitled to such an eternity. Even if I found them again, someday all will change, for all eternity. Like Pierre and the mountain and the head that exploded. Like l’enfant that was now in his teens.
Pierre was left alone in the home, his lover left with l’enfant. but know that there was a happy ending. The child never forgot, and he came back. He knew the universe decided who his true father was, and he returned. Once a week, he was the only one, besides Collette, that was allowed into the apartment.
But before I ever knew any of this I was stuck outside. In the rain. Scared and unrelaxed. Trying to hold what was left of me together. Until finally, I let go and let my bags fall where they wanted, and I sat on a curb, in a puddle of rain and moss and whatever type of flower petals the bees were after.
I decided to pray for someone who is much stronger than me, in a far scarier place. It was selfish really—I needed to get OUTSIDE myself. My prayers went immediately to Madelyn who was fighting for rights of women and all of humanity, all the forgotten, all over the world. She fights tirelessly, bravely. Madelyn, who is too shy to let me take her picture. Madelyn who instills a sense of pride in me, a sense of fearlessness for being born with a vagina! I will pray for her!
Madelyn in Tunisia, alone. She was probably scared too, but she, I felt, had the right. I was in Paris for Pete’s sake, not exactly Tunisia.
I shook and the tears came with the prayers, like the rain. After I was done the gate opened. A girl, maybe of 12, who looked to be of Middle-Eastern descent. Thick coke-bottle glasses, long beautiful hair. Hints of waves that fade when she smiles. Her smile was the greatest thing about her as she walked through. I felt aligned with her. I could feel Zoe. Smell my kitchen at dusk in the fall. Books, the smell of books. She was familiar.
I showed her the papers, and she smiled and tried to see. She put them up to her left eye so that they touched her left lens. Her right eye looked wrong. It was separate and an entirely other universe of it’s own, but in darkness. I could tell it did not work. I understood, my tongue did not work. I could not communicate. My leg was fading. My heart’s hand fell into hers. I understood her right eye.
She smiled sheepishly and said, “Non…pardon.” I said, “Merci,” and smiled. There was something about her. I didn’t want her to feel let down, or like she let me down. It was okay. Back to my puddle. I touched her shoulder again and said, “Merci.” Maybe I was thanking her for the smile. Or the waves in her hair, or for Zoe, or the parts of her that didn’t work like the parts of me that were breaking? I wasn’t sure, but I meant it when I said, “Thank you.” Merci.
I deflated back to my puddle once more and waited. Rather quickly, she returned. She waved me to her, then met me halfway, and helped me with my things. Leading me, she brought me to a building and put her eyes to the intercom. Her lens was touching it, almost. She continued and pressed buttons and pulled me in. There were stairs to the lift. She was much stronger than me. She pulled my “stuff” up and into the lift.
That simple task seemed so big to me then. Did she know how big she was to me then? How small I was on her turf? I was at her mercy and I was eternally grateful and tired. In a way, I gave myself to her, I handed myself over. She shut the gate. Floor 6. She opened it. Colette.
I cried again, with pure relief, and I shook. Shocker. I didn’t know the words to thank her. Just a weak, “Merci.” SO I cried and hugged her as she went onto the lift. I tell everyone, her blushing was what I brought back FOR ME. She blushed like it was the first time anyone ever saw her. Perhaps she is too young to understand she saw me first. She had done good, the blushing was a hint she knew it. She felt good. I felt good that she felt good. Everybody’s GOOD. Great!
When Colette brought me to my room, I could feel the draft through the gorgeous windows. Old, antique. Filled with busts of Beethoven and a piano. I was essentially sleeping in the Louvre. My eyes focused on a Givenchy robe hanging. She kept taking it down and handing me the yellow robe. I know Liv Tyler likes Givency, but I have never in my life touched anything Givenchy (Jee-Vahn-Chee, say it with me, it is so lovely). I think she was telling me it was for me, and the slippers she kept handing to me, to put on? I nodded merci, and accepted.
I shut the door, let my wet clothes fall to the floor, put on some sweats and my Those Darlins tee-shirt and wrapped myself in the robe. I climbed into the bed. The one people warned me might have bed bugs. I wasn’t leaving, not until Robert (Roe-Bear) came back from Singapore. I took in the smells. It was a mix between unpasteurized and old. Good and pure. I can’t explain. It is a smell I’d assumed from books and now I was in it. I was also in a bed, all the way in it, and warm. I was hungry, but dared not leave. I was too scared I wouldn’t find my way back. My stomach kept making noises I hid under the robe. I would stay still until Robert came for me. I feel asleep until he knocked at 10 pm, wrapped in warmth at last.
Robert is an American in Paris, but he’s been there forever and is more European than American. A colleague I have only ever met on the internet, we were a global office; one of teleconferences and calls and emails-never face-to-face, I was trusting him, like I was suddenly trusting every stranger-with all of me, blind trust. Yes, he was a colleague, but a stranger nonetheless.
Roe bear was gentle. He would point and explain and let the hint of an R pronunciation roll off his tongue like a teacher would. He wasn’t arrogant. He was actually softer once he let me in. If he had lived before, he’d have been a diplomat, always jumping off and translating and helping, not just me, but anyone who seemed to need assistance.
This is my favorite thing about Robert. His reflex to help. I was on another intellectual plane, his flew way above mine lol, but he was a helper like me. On every basic level, whether you are a born a prince or a pauper, you are either one of two things; a helper, or not. You either help no matter what, or you are not a helper. I don’t care what excuse you have, like tired. That is the worst of them all. Tired. You either help or you don't. Robert flew from Singapore and back, and then hopped a train to get to me. Thirty-six hours. We at Indian food starting at 10 PM. It was worth it for me. I felt tired, we were zombies, but we were blessed. I was safe with him.
When I think of all the lives mine intersected with on that day, my first day in Paris, the hell ride, I think the most of the little girl that came back for me. She left, but she did not forget me. She left but wondered where it was I was meant to be, how could she help? And so I wondered reciprocally about her. As I walked. As I slept. She was in two dreams of mine. Later, I asked Robert to ask Colette about the little girl. The one with the smile and the waves, the one that appeared as I prayed for Madelyn in Tunisia.
“Ooooh yes yes, she is a blind girl from Tunisia. She lives upstairs-her family came to France for better healthcare for her.”
“So as I let go, and sat in the puddle and let my bag falls and decided to pray for my friend in Tunisia…a Tunisian girl, who is blind, walks through the gates and helps me? A blind Tunisian girl is the one who SAW a lost American woman and helped her, delivered her?” was what I wanted to say, but I didn’t. Like I did with the taxi-driver, I nodded and gulped something down. I know I think too much, and as far as God and the universe, I’m so far gone and “in it”. It doesn’t translate to any language here on this planet, not well anyway.
I knew I would explain to Robert later and that would do. He would understand. He was stoic-like, but there was a hint of vulnerability he let me see. I knew he’d get it. But for now, I just said, “Oh, thank you. Thank you.” And I meant it, but I don’t think that was meant for Colette, but for Madelyn who was alone in Tunisia, and for the blind girl who came from Tunisia and saw me sitting on a curb in Paris…and to the God that heard all of our prayers, intersected us, so intimately, at one point on some spiritual plane in time …we collided. Somewhere between Tunisia and France.
I think of Pierre who was forever changed, seemingly for the worst because of an aneurysm. Once the rugged mountain-climber, now left blind and paralyzed in the dark in a country that is not handicapped friendly. I thought of my husband who was across the Atlantic, who I wouldn’t see for over a month, and my friends. I couldn't help but be hit with this wave of understanding--all we are…are these points on spirituals planes that collide, if we are lucky. AND, we are always in motion. I think some people try to stay in one place, so as to STOP such motion. I hate change. Sometimes I just crave to be laying on my childhood couch in Bloomfield, NJ. It was green and velvelt and I would order food in and just lay and watch TV, not a care in the world.
Just one day back there would be lovely, but I can't. Or one more day holding his hand, in the backyard where he projected he wouldn't be to see the next fall's leaves fall around us. We'd push the leaves with his cane and crack them. I'd squeeze his hand, not knowing what to say. But I can't. He did make it one more fall. I lost him in the spring.
We can't keep what we have my friends. These lives are fleeting. Everything is fleeting. If that is life, then what the fuck are we waiting for? Why are you sitting? Please get up and go do what you always wanted to do, but were too scared to try. I'd rather fail, then sit still, pretending that time won't change. I’m scared to try, but I'm too tired to sit fucking still anymore. Go, move, climb mountains, fly to Paris, LOVE somebody, HELP someone.
You cannot will it away, or will this world to stop. I will lose my family and my flowers someday. Someday, in the near future, my life will be completely different than it is today. So why stop and pretend. Just go and maybe, just maybe you can change the trajectory of many lives, for the better. LIVE now because it WILL change. I left his hand that fall, not wanting to sit counting falls and projecting. It is too painful. It is too painful. If you move, if you go now and try to make it better, there is hope. SOme sort of relief. That, and there is good. The good will find you and escort you the rest of the way. Go.
Note that for some people, they are more comfortable in motion and never stop to be rooted. You must be both, but in my own experience...I'm too well-rooted. I'm not of the other breed.
Pierre lost his sight and his legs and his son. He was a good man before, a devastated man after. But I think the trick is to keep going. Keep going anyway. The universe will hand you a great big blob of ICK and say, "Here, I dare you, make peace with THIS!" and then laugh. Smile. Try. Laugh with it. Go anyway. And like the son, or the little blind Tunisian girl…it returns to deliver.
Me outside Sacre Couer, picture taken by Robert...circa June 8, 2014.
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