​A friend gave me a Kindle edition of The Diaries of Franz Kafka. We’d been talking about Kafka at the New Year’s Day party that he and his wife (also a friend) have every year. I’d told him that I was reading The Castle and rereading The Trial, so he gave me a new version of the Diaries. Not long ago, I’d read an essay by the translator and an excerpt of the text and liked them both, so I decided to start.
It was Wednesday morning. My nurse aid arrived as I was finishing my leg stretches. I went back to bed and started reading Kafka’s notes while she made breakfast for me. Ross Benjamin, the translator, has done great justice to the author. I was immediately engrossed in Kafka’s beautiful writing and in his portrayal of Jewish life in the Prague of his times, one hundred years ago. When I got to the middle of a passage describing the dancer Edvardova, my nurse aid came with the tray. I had to close my Kindle and put it away.
A feeling of disappointment swept over me. Closing the Kindle meant shutting the door to a world outside the world where I live. I live in a world where I have to move around in a wheelchair; where I’m constantly haunted by the fear of losing my balance and of an unexpected seizure; and where despite constant exercises, I can barely move my left arm and hand. So, as I’m stretching, eating breakfast, or doing my exercises, I think longingly of Kafka and my Kindle.
 

​When the events surrounding my injury come to mind (the stay in the hospital; the surgery; the stay in the rehab center; the discharge; and the bout of seizures and second stay in the hospital) my memories are either erroneous or vague. I have images of my second stay in the hospital. I see myself lying in a mat in a wide room divided by short curtains that let me see everything going on around me. A group of nurses assigned to that room were taking shifts. I see them walk from patient to patient responding to their call. When I underwent the new surgery in May 2022, I was transferred from the recovery room to a private room. As it was the habit in the hospital, the nurse who took the shift introduced himself to me. I recognized the name: You were my nurse a long time ago, I said. And I told him that he had been very kind to me: I was so scared I would get another seizure, and he had been very patient and supportive. He smiled and nodded. Then it dawned on me that my stay after the reiteration of the attacks wasn’t in a wide, collective room, but in a private one; despite their detailed clarity, my memories were incorrect.
Other times, I have reminiscences of my stay at the rehab center. I vaguely remember that a Jewish orthodox nurse (I think he was a nurse) approached me and talked to me. I remember nothing of the content of his speech, just his accent and that he interspersed words in Yiddish. And I remember only snippets of green in the garden and shadows in the pergola where I sat with Eric. I remember begging him not to go: I was fearful and confused.
But there are two constant reminders of my injury: a hollow section on my head that hurts at the touch and a difficulty in swallowing my saliva. My saliva starts increasing despite my efforts to swallow it, to the point that it makes me cough. No matter how I try to contract my swallowing muscles, it keeps increasing, and then I succeed. The fear of drowning is the return of a bodily memory embedded in my archaic brain –  bubbling saliva flowed from my lips, as Eric tells me.
The hollow section is a consequence of the replacement of my temporal bone with a bone plate. When they took away the bone to let the blood flow and thus eliminate the swelling of my brain, they had to put a bone plate in its stead. I have two constant reminders of my injury: a hollow, painful side on my head, and an irrational fear of drowning in my saliva.

​ I’ve been friends with two women, Deby and Ale, for short of forty years. Our friendship survived my seven years in the US, where I did my graduate studies; Ale’s years in Spain, where she studied for her master’s and her PhD and where she’s still teaching at the university; and my last years back in the US, where I’m still living. Since my injury, we’ve been communicating via Whatsapp. Deby put together a WhatsApp group, and we organize a group video call every now and then – the wonders of contemporary technology.
Ale travels quite a lot. While she was traveling, she fell in love with Africa. Since then, she’s been flying to this continent whenever she has a chance. She was visiting Marrakesh and sent pictures of the Saharan desert to the WhatsApp group. I watched them for a long time and was fascinated: the large, mountainous desert at sunset, with an expanse of orange sky surrounding a dazzling circle of sun; soft mountains of ocher sand stretching endlessly; shadows of turbaned people riding camels cast on the sand mountains. I was entering a strange world on the border between fantasy and reality, and in watching this world, I could picture myself traveling across it. I could walk through it without needing to walk.

​My brother and his wife decided to renovate their apartment. Their stove had gotten too old and had to be replaced, and since they would replace it, they decided to make all the changes they needed to do for the house to be habitable, which had been long overdue – in for a penny, in for a pound. So, they hired a contractor and went to several stores to pick appliances, paint, floors, and toiletries. They planned the house to be ready when my older brother came back from visiting me in Beacon (I tell all about that in Turning Sixty).
But as soon as the renovation began, problems cropped up, which caused it to drag out: businesses brought their products later than they had assured, and the products were taller or shorter; there were unforeseen cracks; the employees in charge of installing them didn’t show up at the expected date; and myriad issues that prolonged the eagerly awaited ending. My mother had traveled to Israel to meet her new great grandchildren and to see Alona, the eldest, in the flesh. When we talked on the phone, she related the misadventures of the ill-fated project as well as my brother and his wife’s bitterness. Nothing went well. And on top of it, the lack of a sink prevented them from cooking and eating on clean kitchenware, which forced them to go downstairs to wash it and then come back upstairs – an inconvenient way of living. When the house is livable and more beautiful, said I, these misfortunes will be just an anecdote. You’re right, she agreed.
The conversation gave me food for thought. After all these mishaps, the house would be finished. So, they could set their eyes on the time after the renovations. But I didn’t have an end in mind: I didn’t know if I would be able to walk or to move my arm and hand freely; I didn’t know if I’d be able to swallow or to talk “normally.” That meant I couldn’t focus on a happy ending. I had to wait. I had to focus on each baby step, as a nurse at the rehab center used to call the tiny progresses I made. And every time my eyes looked in the distance, I should turn my head and look near me.
 

​I woke up on a Friday, my voice slurred and seeing double. The MRI showed plenty of hemangiomas in my brain. My neurosurgeon decided to take out my bleeding hemangioma. He thought the operation had been successful, but as he was closing the incision, he discovered that the other hemangiomas had bled. He took out the temporal bone to allow the blood to come out, and I got out of the coma. When I woke up, my left arm and leg weren’t working. I’m alive, but an uphill slope awaits me.
When she had a routine x-ray, my late client found out she had a malignant lung cancer and was told she would die in six months to a year. She fought tooth and nail to keep living, yet she lost her battle after seven years. Our friend told us that his best friend had been diagnosed with a very aggressive lymph cancer and was told he had a month to live. He’s desperately trying to find treatment for it. The countdown has started.
We live a full, active, and creative life – for some, pleasurable; for others, satisfying because successful or meaningful. But suddenly, our path changes direction. We don’t know why or how; it happens unbeknownst to us, and there’s nothing we can do save keep on going: stubbornly, despondently keep on. My late client faced, and our friend’s friend is facing, the threat of death. I was unconsciously close to death. But I’m still living, and what she experienced, and he’s experiencing, as a descent, I’m experiencing as a progressive (if very slow) ascent. Yet, we all have in common the unexpected development, the inability to understand, and the difficulty in coming to terms.
I’m still living; still oscillating between anger and yearning, on one end, and pleasure and happiness, on the other. The key is to stop oscillating and to stay firmly in the other end, but it’s a difficult thing to do. However, when I’m on the radiant end, I move back to darkness after quite a while, and there are three reasons for the delay: my reading and writing; Eric and my friends, who love me and whom I love, and with whom I discuss ideas and thoughts; and Nathan, who loves me and whom I love. I feel joy when we discuss ideas and politics, and in watching him grow.

​After more than four years of constant exercises – arm, hand, speech, leg, walking – I still can’t get up, or walk unaided, or balance more than a minute, or swallow thin liquids or talk clearly without my tongue twisting. So, when my older brother was visiting, I told him about it and asked him about the cause. My neurosurgeon had talked to him about that, he answered. Patients with disabilities who exercised sometimes reached a plateau. I didn’t have a chance to talk with him until he left for Israel, so when I was chatting on the phone with my med school friend, Fernanda, I thought I could consult with her husband, David, who is a physician specialized in rehabilitation. I asked him for how long I would have to do my exercises. The view about the amount of years had varied over time, was his answer. But the bottom line was, you had to do them all the time to maintain muscle tone. Then he passed on the phone to Fernanda.
After I signed off, I felt depressed. The future seemed hopeless. I pictured myself ten years from now, grey-haired and wrinkled, doing my exercise routine every day. I talked to Eric about my conversation with David. To my surprise, he was nonchalant about it. Everybody had to do exercises to keep their muscles toned, he said. What? Then I wasn’t special after all?
A couple of days later, I was resting in bed. I was tired after a full day of exercises, writing, reading, and chatting with friends. My mind was shot. I couldn’t read or write. So, I lay in bed, my mind drifting, while I heard the usual sounds of Eric cooking in the kitchen. Then, it dawned on me: it wasn’t “everybody”; it was athletes that needed to train every day. Otherwise, they would lose muscle tone and be out of shape, and their performance would worsen. The result would be the defeat of their team, and likely the loss of their job. That meant that I didn’t have to act as if I were a disabled person – I had to act like an athlete. I had to focus on training every day to keep my muscle tone.  The far-away future didn’t matter: if I expected my disability to disappear, I was a candidate for disappointment. Instead, I had to focus on the present: on doing my exercises every day. That way, I wouldn’t be waking up thinking, Not again! I would be welcoming another day of exercises with enthusiasm.

​This August my mother and brothers came to Beacon to be here on my sixtieth birthday. The latest COVID variants are much less severe, and governments are giving more doses of the vaccine. So, fear has subsided, and borders are open, which has caused flights to grow. That is why my mother and brothers started planning a trip to New York for my sixtieth birthday. Three years had passed since I’d last seen them. Back in 2019, I’d been just discharged from the hospital and was slowly coming back to life. Now I could chat with them and enjoy their visit.
On the day of my birthday, I received many messages and phone calls – more than I could have ever imagined. The injury represented a turning point for me. Before I suffered it, I used to count the number of birthday wishes; afterward, I stopped counting: numbers were inconsequential because I didn’t need a permanent confirmation of my value in their eyes. But no matter what the number was, they made me feel loved. What is more, despite my insistence against their doing anything, my two brothers and my mother made three cakes. So, the small table was full of food – the three cakes and the fruit Eric bought and cut up.
Then, the guests arrived. We were ten in total, a small party, as I wanted it to be, but emanating warmth and a sense of mutual affection. They sang Happy Birthday, and I blew the candles. And they also sang a funny Happy Birthday song to the music of Leonard Cohen’s “Hallelujah.” In 2019, there were a lot of people in my birthday party. It was outside in our backyard, and a large table covered with a tablecloth was packed with food brought by the guests (I talk about it in another chapter). It was fun, and I enjoyed it. This party, on the other hand, was inside (the day was unbearably hot), and it was much smaller. There was no food except for the cakes and the fruit. But it was fun, and full of love and joy. I will keep the memories stored in my mind so that I can resort to them when I feel frustrated, or despaired, or depressed – just like going on the deck.

​When we moved to Beacon about fourteen years ago, my life began to change. We wanted to leave Westchester. We had a baby and didn’t want him to grow up in Pelham, a bedroom city where we didn’t fit, either because of our income or because of our way of thinking. Beacon was affordable and had a life of its own. As soon as we closed on the new house, we began the transfer.
Beacon’s location is enviable: on the banks of the Hudson river, at the foot of Mount Beacon, and close to Hide Park and the Roosevelt and Vanderbilt estates. Scenic Hudson, the non-profit organization that concerns with renovating public spaces to bring residents closer to nature, have done a great job. They’ve transformed the banks of the Hudson into green parks, among others, Long Dock Park, one of my favorite places to go. Long Dock Park constituted my first stop when I started to work on Vida en la tierra (Life on Earth). Those visits were my initial contact with nature; they made me appreciate it, and Beacon. I learned the difference between living in the country and living in the city; I experienced the calming effect of the greenery, the river, and the silence. Eric, Nathan, and I would go the Riverfront Park (a very large park on the Hudson) or Long Dock to walk, swim, or listen to live concerts. I think I never enjoyed myself more than by sitting on the grass in front of the river and listening to music.
Then I got the injury. Since then, I’ve been going on the deck every day when the days are sunny and mild. Spending my time there, sitting in the wheelchair and feeling the lawn, leaves, and fruits keeping me company, gives me a sense of peace. Whenever I feel angry, impatient, or depressed I resort to the best cure – diving into nature. While I’m watching the trees around me, my mind travels to the Long Dock trail by the river, where I used to stroll in the spring. I picture high trunks climbing to the sky; others, twisted, brushing the soil; and yet others, split in two, that look like a nine-armed Hydra. And a soothing stillness embraces me. And I stay there for hours, and go back in search of comfort.
 
 

​Every day since more than four years ago, I’ve been doing exercises morning and evening, one day after the other. Following the guidance of the therapists at the outpatient rehab center, Eric and I organized the exercises in different groups, depending on the region of the body and the actions they targeted. My working day, then, is divided into different stages, and I do them every day. Every day I concentrate hard on swallowing without choking, on singing at the right volume, and on pronouncing words correctly. When it’s time for the body, I try to wake up my sleeping limbs: left upper arm, forearm, wrist, and hand, up to my fingertips; and left buttock, thigh, lower leg, ankle, and foot.
And every time I do my exercises, I have a goal in my mind: to strengthen a special muscle that was paralyzed after my injury. To fulfill that goal, I’ve had to focus my mind on that muscle; in my friend Elizabeth Castagna’s words, I’ve had to make my mind speak to it. When I’m resting, I meditate following the directions of the guide’s voice (as I tell in another chapter). And as I’m breathing, I focus on each muscle or organ of my body that the guide indicates.
So, every year, every day, every time since the injury, my mind has had to concentrate on my body’s different elements. That’s why wherever I am, a sense of my body is there with me: a sense of my whole body, of my whole self. I feel my body; I know where every part of it, every muscle, is. Every muscle is speaking to me, and I can hear it.
 
           

​Eric grew up around bikes. He was a bike mechanic and a bike racer. He was really into bikes in the past, and still likes to ride them and read about them. When he came across an assisted-motor tricycle built for people with disabilities, he immediately thought of me. The company, Utah Trikes, is small. They import parts from Germany and build them according to customers’ needs. He contacted the owners, and bought it thanks to the aid of generous friends. After the brain was no longer exposed, I started trying it. Eric thinks that once I get the hang of it, I’ll be able to visit friends in the neighborhood and go for rides on Madam Brett and Beacon’s rail trails with him and Nathan. Still, the trike is too wide to cross doors, and if I got in I’d have to transfer to a chair, which isn’t that safe. This means that I’d feel uncomfortable going to stores or coffee shops. So, I couldn’t go anywhere by myself – I still need help to move around.
            But when Kelly came, she said something that totally surprised me: wheelchairs could be changed every five years, and my wheelchair (manual, and therefore hard to maneuver with just one good arm and hand) was getting close to five years of use. So, it could be changed to an electric wheelchair, and the health insurance company would take charge of the cost. I envisioned all the things I could do with an electric wheelchair and was overjoyed. Imagine that! It was small enough to cross the threshold of coffee shops and friends’ houses; small enough to let me move around the aisles of stores; and I wouldn’t need to transfer to a chair: it was a chair itself!
When I eventually have the two vehicles, I’ll be able to do lots of things. Not only will I go visit friends in their backyards and bike trails with Eric and Nathan; I will also meet with friends at coffee shops and go to stores to buy medicines or other things I may need. By myself!
The two vehicles will give me a sense of independence. They will make me feel free. But I will need to overcome the fear that independence will cause: the protection that dependence offers (the boundaries it draws that I’m unable to cross) will be gone. I will be able to go everywhere I don’t want to go…