​I’m envisioning my time in Argentina two weeks from today and wonder if I’ll be able to manage on my own. I remember my life in Buenos Aires when I was quite younger. Back then, I was able to move around from one place to another either on foot or by bus. Buses were old and creaky, always spewing dark smelly gases. They would stop briefly on every stop and speed up after passengers got on or off. They had no wheelchair lift, and the magnetic devices that had made bus drivers’ job easier were too high for disabled people to reach them. When you met with friends at coffee shops to have a chat (a typical Argentine tradition), you could find bathrooms only up or down the stairs. I would take buses and coffees and never give it a thought. Now, more than twenty years later, I can’t think of anything else. When my publisher asked me if I wanted to have a “live” book party, the first question that came to my mind was, can the center be accessed directly, or are there stairs to reach the entrance? Can you remind me if there’s an elevator to the second floor? And I even overlooked the bathroom for disabled women.
Everything has changed since my injury. I’ve had to shift the angle from which to look at things and the questions I pose. I have to think of myself in a different way. I’m no longer able to do things that used to come naturally to me. I have to wait for somebody to push my wheelchair, as I had to do at the rehab center – until (if) I get strong enough to walk with a walker while keeping my balance and don’t get tired. Until this happens, until I’m strong enough to be able to control my muscles well enough to climb up and down the stairs and go to the “normal” women’s bathroom, I’ll keep standing outside buses, coffee shops, and museums. Like the character in the “Cafetín de Buenos Aires” tango, I’ll see everything from outside the glass window of the local coffee shop.

​I wanted to change accountants, and my friend had strongly recommended this one, so Eric and I decided to contact them. I called them up and we set a date for a meeting. Eric asked if the building was wheelchair-accessible because I’d had a brain injury, and they suggested an office that met the requirements. Finally, we had a date and an address. We showed up at the office, I in the wheelchair, and Eric pushing me. Then we sat down to discuss IRS and taxes. As the conversation progressed, I had to ask for an explanation. Eric offered it, but I didn’t understand. He tried again, but I still didn’t  understand. The accountant’s expression was sympathetic. “Poor woman,” their eyes seemed to say. So, I decided to shut up. We went back to earnings and deductions. Some days later I learned that I’d missed a fragment of the conversation, and that was the reason for my lack of understanding.
When I first woke up from my coma, my brain was still full of blood. I was very confused and had episodes of persecutory delusions. As the blood slowly reabsorbed, my confusion and delusions disappeared, but I couldn’t situate myself in a specific time; I couldn’t understand instructions; and I thought I’d heard people say something they’d never said. In short, my cognitive ability hadn’t been restored. So far. Now when I wake up, I know on what day in the month we are; I remember what people have said to me; I can maintain conversations and make appropriate remarks and I understand instructions. Does that mean I’ve recovered my cognitive ability? I don’t know. But it does mean that when people learn I had a brain injury, they shouldn’t infer that I can’t understand what I’m told, or that I need a keeper. And I should remember this admonition as well. We should treat a new person in our lives as though we hadn’t known them before, no matter their previous history. All human beings deserve respect, whatever the cause of their disability.
           

​My older brother urged me to get a traveling medical insurance before buying a ticket to Argentina, “just in case.” So, I researched about best travel medical insurances, picked one, and made a phone call. The salesperson suggested the best insurance that accepted travelers with preexisting conditions. I consulted with Eric, and we decided to purchase it. But when I told the salesperson, they said I had to buy it six months before my trip.
Six months before September 8th, I called the insurance and talked to a different salesperson. I said I wanted to buy the insurance plan. The salesperson proceeded to ask the routine questions you are asked when you buy something with a credit card. I answered, but they couldn’t understand me. They repeated the questions, and I repeated the answers; they failed to understand me. I spelled my data; they still failed. Then they suddenly said, “I can’t understand you. Give me your email address and I’ll send you a link so that you can buy it online.” Apparently, this time they were perfectly able to understand me. A few seconds later there was an email from the insurance with a link.
I clicked on it and saw a form to fill with a star that indicated the required information. It was a whole lot of information. What is more, a warning appeared everywhere in the document about the possibility of losing the password. What password? I wondered. I was about to submit my information, when I decided not to purchase the insurance online; better to call the company again. The next day I called and I was transferred to a salesperson who, miracle of miracles, understood everything I said. I bought the insurance on the phone and gave a sigh of relief.
An Italian friend of mine has the same problem when she talks on the phone: no sooner does she start talking than they hear her accent, classify her as a foreigner, and stop understanding her. To have a useful exchange, participants in a conversation have to understand each other. To understand the speaker, the listener has to be willing to listen. No matter how many speech exercises I’ve done, I still mispronounce words. Despite that I’ve lived in the US for a long time, despite that before my injury my slight accent went unnoticed, when I talk on the phone, I sound as a foreigner. We foreigners are unintelligible.
 
 

​I had the brain injury in April, 2018. Before then I could walk and type on the computer; I could hand in jobs as fast as my clients expected me to do; I could juggle multiple jobs; and I could manage the household money. Then disaster fell upon us. You have to get used to the idea that your life has changed, Eric told me. No, that’s not true, I thought. Someday I will heal, and my abilities will be restored to me: I’ll be able to walk (not to dance, but it didn’t matter) and work (not as fast, but it didn’t matter either). I will no longer need the wheelchair because the cane will replace it. The past won’t come back, but some (distorted) version of it will.
Now, five years later, things have changed but only slightly. I have to keep exercising. I still swallow with an effort and will start coughing if I drink water too fast. And when I’m tired, my muscles can’t function normally. So, after five years, I remember Eric’s words and have to agree with him – the wisdom of hindsight, as they say. I’m a different person from the past “me”: I can’t juggle jobs or type fast or even translate and interpret fast – especially if I’m tired. I can’t walk, not even with a cane. And I don’t know if I will ever be able to set aside the wheelchair, or talk loudly without slurring my voice or twisting my tongue.
            I receive the Brain Pickings newsletter on my email every week. Its editor, Maria Popova, picks a topic and comments and chooses quotes around it. In reading Brain Pickings, I came across Katherine May’s book Wintering. The Power of Rest and Retreat in Difficult Times. Some of the passages resonated with me. May says that misfortunes happen to everybody, including ourselves; chance is unpredictable. But we can learn from our special mode of disaster – of winter.
            I’m trying to learn from our winter (it isn’t mine alone: it is Eric’s and Nathan’s). I’m learning to get past the fights, and listen to Eric and share my fears with him. I’m learning to slow down and watch him; to keep quiet and hear him; and appreciate who he is. I’m learning to listen to Nathan, and am trying to help him whenever he needs my help (I have plenty of time to chat!). I’m learning that I have to create an opportunity for us to be together; I enjoy our chats (when I don’t feel annoyed) and discovering who he is in the bottom of his mind.
Spending most of my time in bed can help me get closer to them and take pleasure in knowing who they are.

​I had the brain injury in April, 2018. Before then I could walk, take a shower, and type on the computer. I could hand in jobs as fast as my clients expected me to do; I could juggle multiple jobs. I could manage the household money. Then disaster fell upon us. You have to get used to the idea that your life has changed, Eric told me. No, that’s not true, I thought. Someday, I will heal; my abilities will be restored to me; I’ll be able to walk (not to dance, but it didn’t matter) and work (not as fast, but it didn’t matter either). I will no longer need the wheelchair because the cane will replace it. The past won’t come back, but some (distorted) version of it will.
Now, five years later, things have changed, but only slightly. I still swallow with an effort and will start coughing if I drink water too fast. And when I’m tired, my muscles can’t function normally. So, after five years, I remember Eric’s words and have to agree with him – the wisdom of hindsight, as they say. I’m a different person from the past me: I can’t juggle jobs or type fast or even translate and interpret fast – especially if I’m tired. I can’t walk, not even with a cane. And I don’t know if I will ever be able to set aside the wheelchair, or talk loudly without slurring my voice or twisting my tongue.
            I receive the Brain Pickings newsletter every week. Its editor, Maria Popova, picks a topic and comments and chooses quotes around it. In reading Brain Pickings, I came across Katherine May’s book Wintering. The Power of Rest and Retreat in Difficult Times. Some of the passages resonated with me. May writes that misfortunes happen to everybody, including ourselves; chance is unpredictable. But we can learn from our special mode of disaster – of winter: “Watching winter and really listening to its messages, we learn … that life is often bloody unfair, but it carries on happening with or without our consent.”
            I try to learn from our winter, because it isn’t mine alone: it is Eric’s and Nathan’s. I learned to listen to Eric and share my fears with him. I learned to slow down and watch him; to keep quiet and hear him; and appreciate who he is. I learned to listen to Nathan and try to help him whenever he needs my help (I have plenty of time to chat!) I learned that I have to create an opportunity for us to be together, because I enjoy our chats (when he doesn’t annoy me) and discovering who he is in the bottom of his mind.
Spending most of my time in bed can help me getting closer to them and take pleasure in knowing who they are.

​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.