​My older brother visited me in September a year after I was discharged. His visit coincided with the celebration of the High Holidays, or the Days of Awe, Yamim Noraim. So, my brother offered to push me to the Synagogue to Yom Kippur services, Kol Nidre. I used to attend every year before my injury because they are meaningful to me: my parents would take my older brother and me when we were young, and the music is beautiful – even more beautiful when sung by Ellen.
When we were getting ready to go, I got upset. My brother asked me why I was upset, and I answered that I wanted to wear nice clothes (just as we would do in Argentina for the Jewish holidays) and I had to wear my pajamas. My brother said he would find nice clothes for me. He brought a nice pair of pants and a silk sweater, and he helped me change. I went to the synagogue wearing them and felt good.
Time went by after September, 2019. Many friends visited; many friends invited us. We went to parties and had parties. We went to dinners and celebrations. I learned that nobody cared about how I looked or what I was wearing: they were happy to see me because they thought they would never see me again. And I slowly got used to wearing the same I wear all the time. I didn’t make myself up. I didn’t wear jewelry – putting it on with one hand is difficult and I would have to take it off before sleeping. Same thing with make-up, with the addition that I would have to take it off on my bed, far away from a sink, which means without water. So, I stopped caring about what I wore or about wearing make-up, or about my hair, or about my wrinkles. I shed all influences of Argentinean culture.
Now that the past is past, I ask myself, in the (very unlikely) event that I could walk and climb the stairs again and could wear skirts and dresses (how I miss wearing sundresses!) and could wear make-up – if I could use the left hand, but somewhat clumsily – and take it off in the bathroom, would I still care about looks? And the answer is, I don’t know. My condition has taught me one thing over the years: that the most important thing in a relationship – whether friendship, companionship, or simply friendliness – is not how we look, but how we feel toward each other – the feeling of affection and gratefulness, and the need to reciprocate. I don’t know if I would go back to caring about how I look, maybe I would – I think I would. But lessons learned stay in our memory.

​When I was moved to the Rehab Center after waking up from my coma, the blood from the hemangiomas was still in my brain. I felt as if I were having a dream – a nightmare. I had to be alert and look over my shoulder: danger was waiting to occur at my slightest distraction. Every day, I would follow the regular schedule of activities. Eric would arrive in the afternoon with something yummy to eat and keep me company. Then it was time for visitors to leave and for Eric to go back to Beacon to stay with Nathan. It was time for me to stay by myself; time for the sense of threat to return. I would have to be alert, ready to flee.
I felt hounded – I had to leave the bed and reach a safe place. I didn’t know where I could find it, but I was certain that I had to leave my bed and the room. The Rehab Center was equipped with hospital beds. Each bed had guardrails and an alarm. If patients wanted to escape, they would touch the guardrail and set off the alarm. Fear compelled me to lift my functioning right leg over the guardrail and step with my right foot on the floor. I would pick my limp left leg with my right hand and lift it to follow my right, and would keep limping. I don’t quite remember how: the only image that has remained in my mind is that of me holding my left leg and stepping with my two feet, the good one first, the bad one second, limping all the way. And I wonder how I could do that. How could I keep my balance? Why didn’t I fall?
Five years have passed since I was discharged, and the blood in my brain has been gradually reabsorbed. Little by little, I’ve regained my ability to think and reason. But my left leg and glute are still weak. I can’t balance, so I can’t walk without a means of support. Before it was the crutch. Now it’s a walker. And whatever the means of support, I’m always afraid of losing my balance and falling until I get used to it. But I didn’t have that fear at Rehab Center. And I didn’t fall.
I’ve come with a tentative answer for my questions: I could walk without fear, and I didn’t fall regardless, because I couldn’t think due to my confusion. I still remember what my dance teacher used to tell me when I couldn’t master some dance step: “Don’t think!” Now my ability to think has been restored, but it has brought back irrational, uncontrollable fear with it. Just as the irrational sense of threat at the Rehab Center compelled me to flee, so does irrational fear stop me to walk. But just as I could walk confidently then, I have to do it now: I have to vanquish my fear.

​Since before my injury, I’ve been receiving emails from different publications almost daily. Among these publications is Hyperallergic, a magazine that looks at the art scene from an alternative angle. That’s why they review exhibits of artists excluded by mainstream art institutions. Last week I read a review by one of their contributors, Lisa Slominski. She describes a series of works centered around the notion of care. In this context, she quotes ethicist and psychologist Carol Gilligan, who characterizes care as “an ethic grounded in voice and relationships, in the importance of everyone having a voice, being listened to carefully (in their own right and on their own terms) and heard with respect.”
She then proceeds to report on installations and artwork by different artists who identify as disabled. From there, Slominski describes the birth of a community where disabled artists communicate remotely by sharing recorded voice notes. Thanks to this dialogue, and under the leadership of artist, writer, and researcher Jamila Prowse, they have created a series of artworks, films, and installations titled Hyper Functional Ultra Healthy. According to the organizers, this series “seeks to explore its perceived binary opposite – ‘sickness’ – as a way to propose an inclusive framework of existence for all.” Disabled here encompasses the physically disabled (people who are unable to walk, hear, or speak) as well as the mentally disabled. But they reject the title mentally disabled and prefer, instead, that of neurodivergent. Neurodiversity, a term coined by sociologist Judy Singer, expands to include several neurodevelopmental disabilities, from autism to Down Syndrome to bipolar disorder to ADHD. This category includes so many disabilities that, ultimately, blurs the boundaries dividing them. On the other hand, it protects individuals from being mistreated and disrespected for the sole fact that they are different from “normal” individuals.
Looking at the notion of disability from this perspective makes me think that I’m part of a world populated by more inhabitants than I had ever thought. So, what space do I occupy in this world? Do only physically disabled people need attention? Or, does every disabled person have a voice that deserves to be listened to fairly and considerately? Is there actually a difference between physical and mental? Is there actually a difference between stigmatization and medicalization? Reading about disability generated a lot of questions – a lot of questioning – in me, and they are questions worth thinking (hard and deeply) about.

​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.