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The Hungry Games – A True Short Story of Life With Dysphagia

juliashaybiopicByline: Julia Tuchman is a writer and photographer living in New York City. Having dealt with chronic illness and dysphagia for much of her life, Julia now writes and teaches about self-love in the face of any circumstance. She teaches this because it is a lesson she herself is here to learn. Julia is currently busy working on her memoir and taking care of her six-pound rescue dog Bellie, who in turn offers lessons in unconditional love.

Adam and I are standing outside a Chinese restaurant at night, waiting for a bus. The distinctive smell of Szechwan cuisine escaping from the restaurant onto the street surrounds me. It fills my nose and sends a signal to my brain that I am hungry. I start to cry. I am standing on Second Avenue crying because I can’t eat. Adam sees me crying and without a word he holds my hand.  The smell of the food is so strong and exquisite, that he need not question why I am crying. He knows. This was seven years ago. It had only been a year since I once again lost the ability to swallow solid foods again.

There is this heavy grief within for not being able to eat normally, for not being able to socialize around food or sit at a table with others breaking bread. I have tried over the years to sit at tables while others eat, but I end up crying or making the people around me feel uncomfortable. I bring my liquefied concoction, but then noise and movement in the restaurant is too much… So even swallowing my drink in public can be too overwhelming to my nervous system.

All my energy and effort and concentration go into swallowing. The swallowing therapist at NYU told me this is normal, and that any distraction can take away from the focus of eating, which needs all my concentration.  What once required no thought or concentration now requires thought, concentration and a lot of prayers. I marvel at others eating.

I once stared at a woman briskly walking down the Street––her yoga bag hanging from her back as she ate an apple. She looked at me most likely wondering why I was staring. I stared because to walk and eat at the same time is a wonder to me, as if I just saw the most amazing magic act right in front of me. I see her take a bite and then another and the apple slowly disappears. I wonder if she knows how miraculous it all is, but I am sure she does not. I know when I could eat I did not know how miraculous it was either.

I watch in awe at a man cycling down First Avenue on his bike while eating a slice of pizza.  “Wow!” I say aloud. Biking and eating all at the same time seems incredible, and yet he does it with ease. I watch kids as they eat cupcakes while they walk or gobble up bagels as they play. I see how they can even skip while eating as if it is the most natural thing in the world. I guess it is. These are things I never noticed when I could eat.

In Manhattan there is a restaurant on every block, often more than one. The smells of cuisine from all over the world linger outside of the incredible number of restaurants in the borough: Indian, Italian, Chinese, Israeli, Burmese, Thai, Soul food. Often all the aromas join together as if in a dance.  Each smell pokes me in the gut and my heart. “Here, look what you can’t have, Julia” they say to me. “Look what is not for you!”

Food is everywhere. Often, when I smell the heavenly aromas coming out of restaurants I hear my stomach talking to me, not understanding. If my mouth is salivating why then do I not go into the restaurant and get that piece of pizza? I cant. I can’t swallow it. “Go in there and order that piece of white pizza with onions,” says my stomach that for some reason sounds like a grumpy old man. ”That guy in there is eating a slice? What’s wrong with you, kid?” How do I explain this to my stomach? I can hardly understand all this myself.  “I know you want that piece of pizza with all of your heart or gut” I silently reply. “But, the transit to get it to you is faulty right now.  There is glitch in the system.” All I hear back is my stomach making hungry gurgling sounds. The smell of pizza does that to my stomach.

There is shock and many times I have to say to myself, “Okay Julia, This is what happened: you had this accident, or this virus or mold infection damaged your nerves or brain, or your neck, and then you lost your ability to swallow.” But it still makes no sense because it is so odd, so completely unfair. The CFS and MCS were hard enough, but this? I was angry with God. I thought I got back my ability to swallow and that it would last forever, and I worked so hard! Did I climb up this mountain just to fall to the bottom again? “Why did you take this away again?” I ask as if I might get an answer or could know the whys. They don’t even know why this happened to me. It could be a virus, could be an infection, could be brain damage. It could be, fill in the blank.

In every article about dysphagia they write of the depression caused by being unable to be part of social life. Most of social life is food: breaking bread sharing a meal. The loss of that connection–– that social connection­­–– can be devastating. It has been heartbreaking for me too.

I go to NYU Langone Hospital to get another barium swallow test. The nurse and doctor watch from the x-ray room and I can see their faces through the glass partition as I swallow concoctions of chalky barium. The nurse who reminded me of a blonde Betty Boop character is trying to be funny “I’ve seen worse,” she says.

A week later my neurologist enters her office with the test results in her hands. The look on her face is one of helplessness and no answers. “You have a big problem,” she says.  That was it.  There was no “You have a problem Ms. Tuchman and this is how we are going to fix it: two hours in the operating room and then pizza!” Cheers and applause. Joyous cinematic music used for the life-changing scene begins to play in the background. This would be fixed in no time. No, None of that. They have no cure and no answers. Neurology is a specialty field with no answers I have learned.

While walking down a Manhattan street, I stop at the window of a cozy looking Chinese restaurant. I watch a family eating at a large table laughing smiling and I am brought back in my mind to my childhood when my parents would bring my siblings and I to Tung Sing. We would eat the wonderful food while the staff would often have fights in the kitchen––throwing plates of food and arguing in Chinese. It was all wonderful and magical but far more than I even knew then.  I did not know about such things as not being able to swallow food then nor illness. I knew Tung Sing was the best. I loved going to Tung Sing where egg rolls, spare ribs and those crunchy friend noodles were always waiting for me. I watched this family now through the window my mind taking me back to Tung Sing so many years ago and the feeling of family and laughter.  I wanted that again. I snapped out of the memory of ghosts of Chinese meals past and continued walking on.

Once, I watched a couple through the window of a restaurant holding hands while eating. I envied them. There were lovely plates full of food in front of them and they were smiling.  Adam and I were together at this time and I would have given anything to be sitting in a restaurant with him eating a meal like that.

I went with Adam to a Thai restaurant for his birthday. I brought my liquefied soup and asked the woman who owned the restaurant for a bowl. She seemed upset as if my not eating her food was a personal snub. I tried to explain, but she became even more confused. Adam ate and I tried to get my liquid soup down. We tried to pretend, but I could feel the pain in my heart and I could see the sadness in his eyes. This was one thing we could not share. Focusing on the swimming exotic fish in the fish tank to get my mind off the Thai food smells, I focused on my gratitude for being able to be in the restaurant and share in his special day. I focused on the surroundings. I focused on being able to see-to smell the food and to talk. All miracles. But, I felt left out––an outsider from this important part of life, this physical need, this social need––and worst of all, this might be for life. “But you are alive,” my father will often remind me. “Where there is life there is hope,” he says to me often.  “It came back once before,” he says “It can come back again.” He is right. Mila, the holocaust survivor who lives at his assisted living facility holds my hand  when I first meet her and tells me, “If your eyes are still open there is hope.” I listen to her. She would know.

I have been at an abyss many times in this journey when it felt there was nothing left. There was emptiness so deep and grief so wide that it filled all of me and extended out into the world I saw. There are silent screams that fill me, and this was one of those days.  I did not want to live in deprivation any longer. I walk by a restaurant on one of those days. I am on the other side of the windowpane separating me from the diners, and I pass by one table after another filled with people eating lunch.  A woman about my age eats a grilled cheese sandwich, a favorite of mine as a kid. I used to put French fries in the sandwich with ketchup. People would laugh at my odd combination, but I loved it.

I am brought back to my childhood and to my days when eating was effortless and life seemed sweeter. I begin to cry.  I instinctively put my hand up to my throat in a loving gentle swoop and say aloud, “I love you Julia. ”  My voice sounds kind like a mother comforting her child.  With each table I pass I say, “I love you, Julia. I love you.” Another table with a family eating  “I love you. Julia” Tears fall as this kindness engulfs me. I was starving for this loving kindness to myself as much as I was hungry for food.

This was not a planned “I love you Julia” after reading a self-help book or even a conscious decision. It was not what I was supposed to do or what I was told to do. It came from the depths of my soul, spoke to my heart then to my voice box and brain as well and out of my mouth with no conscious thought. An “I love you” escaped from me into the Manhattan air and then back to my own ears. I was speaking to myself and to that dark emptiness and desperation I felt draining any will to go on. I was filling myself up. I was nourishing myself.

I had lost so much in all these years. I had lost so much, but I had this, the gentle touch to my throat and the kind words to myself in spite of it all. There was power in that. There is something about invisible disability that is doubly hurtful. Nobody sees it, or understands it, and so they judge. When I told my neurologist I did not want to live like this he told me, “I don’t blame you.” He was truthful, but these words were not helpful to hear. I would have loved to hear, “Lay your burdens down. I understand. I can help you.” But I knew only I could offer myself that comfort.

I have judged myself and I have beat myself up over and over as if I were somehow responsible for all the years of illness and seemingly endless knock-downs. But on that day, when I passed those people eating and touched my throat speaking kind, loving words to myself- that choice was the healing.

Years ago, A medical writer/photographer referred me to a psychologist to talk about the loss I felt. The woman was in another state and so we had phone session. After only two sessions of talking to her she wrote me an email informing me that she had written an article for a spirituality website where she was a regular columnist; my story was part of her new article. The link on the email took me to her piece. I was horrified as I read it.  There in the beginning she referred to me as the “poor woman who could not eat.” I was enraged and hurt and I knew this was unethical. She never asked my permission, and I was her “patient”.  Is that how she saw me?  I had trusted this woman. When I wrote to her she could not understand my anger. I demanded she take out that part and yet she refused. I demanded she take out the word “poor” and she refused! She was oblivious. She cared more about my life being material for her writing than she did for my well-being or ethics.

I called the medical writer/photographer who said what she did was not right and would never refer her to any of her clients again. But there was something within me, this fighter who could not allow that word “poor” to be left in there. I wrote to the editor of the site. I told him the story and how I did not give permission. I insisted at the very least the word “poor” be taken out, and they took it out. It was more than a piece of writing to me. It was a betrayal and I could not see myself written of as “the poor woman”. If the only action I could take was to demand the removal of that pejorative word than that is what I would do. I did that.

I look up the article while writing this to see if it is still up. I find it on another site now and see that, the poor woman has now become “the unfortunate man who can’t eat”.  I laugh at the absurdity of it. Now, in her world I have had a sex change!  As I laugh, I also realize that the cruelty or judgment about my situation is her stuff. She can call me “the unfortunate, poor woman/man who can’t eat.” in every article if she so chooses. But, I know who I am.

Still, allowing myself to grieve is healing me. I don’t think I permitted myself to feel the grief for years. Instead my focus was on getting from point A to point B and which doctor would help me eat again. It was the way I coped. But, I am learning to allow myself to feel the feelings as they arise. There are many books on how to be happy or how to have this or that fixed in ten days. What if we accept what is and allow those feelings that are so scary to us to come up? Sometimes I am fearful it will overtake me because there is so much of it, but I still allow it. When I feel grief now, I sit with it and don’t fight it. What a relief to not fight. I allow the feelings to come and go like waves––no resistance or judgment.

Last week I arrived early for a doctor appointment, and I sat with my eyes closed in the waiting room to rest. The secretaries were talking for a half hour about which restaurant they wanted to go to for a large family get-together.  They mentioned every type of food and every type of restaurant available in New York.  One was eating McDonald’s and another was eating a sandwich as they discussed their plans. I had my thermos of protein shake. I was surprised at how neutral I felt. I was hearing them talk, but not attached to what they said. I let the words flow over me and through me. “You really want to test me, God,” I said aloud to the ceiling of the empty waiting room as they continued talking about my favorite meals.  I was assuming God was in the ceiling of a doctor’s office. I am certain the ceiling of waiting rooms hear many prayers.

I touched my throat and sent myself love. I also sent blessings to my liquefied food and went to a place of gratitude for it. It was getting easier. Somehow it was getting easier in the acceptance of it all and the allowing. I even gave myself acknowledgement for how far I have come and how these lessons in these hungry games and self-love were healing me. There is a flow in these sacred moments of self–love and acceptance …like riding waves.

“I love you Julia.” I say as I touch my throat.  I love you even if you can’t eat normally. I love you even if this is forever. I love you even if this all heals tomorrow. I even love you if this never heals. I touch my throat and send it love. That I can do. I can do that.

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