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Joy

12/5/2023

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​A few weeks ago I went for a stroll to Costanera Norte with my friend Deby and her husband. In the 1920s, Costanera Norte used to be a public beach along the Río de la Plata. It suffered many changes over the years, until it became a long line of restaurants with a reputation for their excellent pastas and asados. In the warm seasons, they used to be packed with customers willing to enjoy plates of good food. But the restaurants gradually closed, and the area was emptied of visitors. Recently, the Buenos Aires government renovated the area to offer porteños a place where to enjoy themselves. They transformed the old buildings into wide sidewalks and a bicycle lane, and built a boat that is actually a pier. The road passes by the old Fishermen’s Club, whose restaurant is renowned for its delicious seafood. The sidewalks make it easy to push a wheelchair, so I was looking forward to our outing. On Sunday afternoon the intercom rang, and I went down the elevator with the help of my mother’s maid. Minutes later I was sitting in the car riding to Costanera Norte.
We walked slowly, singing old songs about Buenos Aires and the river alongside it. The Río de la Plata is so wide that when the Spanish conquistadors came upon it, they called it “El mar dulce” –  The Sweet Sea. You look at it and barely make out the horizon: You can only guess what country is on the other side. Above us was the sun. It was windy, so we stayed on the sidewalk, quite far from the shore. We could discern the building of the Fishermen’s Club and the boat/pier. And far away yet, the Columbus monument.
As we walked, the wind subsided. When we reached the monument we decided to make a stop. Deby’s husband locked the wheels of my wheelchair and helped me transfer to the bench under the statue. We sat in the sun for a long time, chatting and enjoying the warmth. While we chatted, I looked at the river/sea, a mix of blue and brown quietly keeping us company. Then I felt tired, so we started our way back. The next day I opened my cell phone and I found pictures of our outing: the Río de la Plata, the Fishermen’s Club, and the Columbus monument under a bright sun; memories of a perfect afternoon.
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Suggestion

11/13/2023

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​An old and close friend came to visit me at my mother’s home. As we were chatting, he told me about a friend of his whom I had met during my time in Philadelphia. His friend’s field was special education, and in particular, the education of children with learning disabilities.  What attracted my attention was the reason for choosing her profession. Like me, she was a foreigner in the US. She had full command of English, but a heavy accent when speaking the language. And as usual, when US nationals would hear her talk, they would immediately refuse to understand her. His  account resonated with me; I was a foreigner speaking English with a bad pronunciation caused by the dead nerve cells in my brain, and US nationals refused to understand me. So, I told my friend to ask her if she wanted him to give me her WhatsApp number. The next day we set up a calling date. A few days later, we were talking about learning disabilities and their social stigma.
I told her that my interest in her experience stemmed from the similarities I’d found between learning disabilities and my physical disabilities, and asked how her career had developed. After summarizing her career path, she asked me about my experience. I recounted my journey. Was I seeing a therapist, she asked. When I said yes, she wondered if I was attending a group of people with physical disabilities. No, I answered. I had thought about it, but I was reluctant to do it; I didn’t feel comfortable. Then, she told me an anecdote. Her parents, who were well  into  their eighties, had gone to an event organized by the community center in their neighborhood. The next day she asked them if they had had a good time. No, they answered; the attendants were all old farts. Her anecdote was both funny and thought-provoking. I acknowledged my disability: my reluctance to go wasn’t a denial. Could it be caused by my fear of discovering that my fantasy of total and final “cure” was just a fantasy? A day later my friend’s friend emailed me links to support groups for people with disabilities.
On the next Saturday, a friend came to visit. When I told her about my hesitation to attend a disability support group, she encouraged me to go. It would be a shock at first, but then I would feel that I wasn’t a unique case. I would feel part of a group that experienced the same suffering and had to overcome the same obstacles. Her words have helped me make a final decision. When I get back, I’ll open my computer and muster the courage to cross that bridge.
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Just Arrived

10/31/2023

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​Eric and I arrived in Buenos Aires a week ago, and he drove me to my mother’s home . After he helped me get settled, he went back to Beacon. Since then, I’ve had a full team – my mother’s live-in maids and two nurse aids – taking care of me twenty-four hours a day. But in spite of that, fear is lurking always in the back of my mind: fear of not being heard; of being helpless in an empty room; of not being able to walk over the cliff separating me from the wheelchair to get to my destination. It brings back memories of my stay in the ER. I was sitting in the wheelchair in the middle of a large corridor, and many people in uniform were running back and forth around me. I sat there drowning in fear for (it seemed to me) endless hours, until one of them heard my screams for help.
When days break sunny and warm, I’m eager to go for a walk. But I need someone to push my wheelchair: sidewalks are bumpy or cracked, making it impossible for me to wheel myself, let alone travel over the irregular ramps at the intersections. When I asked a friend  if coffee shops had refitted their bathrooms to make them wheelchair-accessible, he said he didn’t know – Argentineans have gradually become aware of the needs of people with physical disabilities, but awareness has not been followed by government policies and laws or by their enforcement. But so far, I’ve been too tired to go out of my mother’s home. Even the idea of riding a bus with someone coming along with me is scary – the memory of my youth in Buenos Aires where I was riding buses that were unprepared for people with disabilities is enough to discourage me.
So, regardless of the kindness of porteños, who offer their help right away when they see me in a wheelchair, and the willingness of my nurse aids and my mother’s maids to come to my aid at all times, being in Buenos Aires turns my bed and wheelchair into unsurpassable borders – the carpet and the sidewalks look like endless expanses challenging me to cross them.
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Reason for the break

10/29/2023

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​I haven’t published any entry in my blog since Hamas’s bloody attack on Israeli kibbutzim in October. Israel has committed crimes on Palestinians living in the occupied territories and must be tried in the international courts. Moreover, it should abandon the territories. But the Hamas’s assassinations were cruel, and I can’t overlook the deaths and the mourning they have caused.
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Margin

9/18/2023

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​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.
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Pre-judging

9/1/2023

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​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.
           
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Foreignness

7/22/2023

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​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.
 
 
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Encountering the Unforeseen

7/2/2023

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​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.
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Encountering the Unforeseen

6/13/2023

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​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.
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Appearance

5/23/2023

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​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.
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