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Justice

3/26/2021

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​Eric has a family ritual that I’ve adopted and am encouraging Nathan to adopt. It takes place every night before dinner. We thank all the people who were responsible for our having food on the table: people working the land and harvesting the produce; grocery employees; youth in charge of market restacking; and dairy workers. I strongly believe in the importance of attaching their deserved significance in the provision of our food to overlooked people.
Recently, when we were doing our daily ritual before dinner, I pictured the workers involved in food production. Many of them are Latin American migrant workers, which makes them the object of derision. They are paid under minimum wage for working in terrible conditions. I pictured them at their workplace. I saw men, women, and youth who have perfectly functioning legs, arms, and hands with which to ensure the provision of the food for us to pay (with Eric’s hard-earned money, I must add).
Unlike me, these workers have fully operating limbs. Yet unlike me, they have to work hard to make ends meet and save enough money to send home. So, my adopted ritual made me rethink my idea of justice.
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New Try

3/23/2021

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​While I was talking to a friend, she asked me how I was doing with my rehab. I shared my disappointment with her: I did the exercises every single day, but progress was very slow, I told her.  My leg didn’t go farther than walking – it turned outside and I couldn’t turn it inside. It shook. Plus, I couldn’t move my arm and fingers. I felt really frustrated. So, my friend started probing: Had I tried seeing a better therapist? Was I still going to the rehab center? Why didn’t I call the old therapist I liked? If the rehab center that had aqua-therapy was in Newburgh and Eric didn’t have time to drive me, why couldn’t I call a reliable cab driver who could help me? Or if that wasn’t feasible, I had friends whom I could ask for help.
Our conversation set me traveling in a lot of different directions. Why was I dissatisfied with my slow progress? Why did I consider it slow? Was it impatience? Was it guilt for Eric’s level of work, and hence of his stress? Why the reluctance to go places on my own? Why the unsurpassable, overwhelming fear? Why did I immediately resort to Eric? I traced my mind back to the onset of the quarantine and our decision to stay home – my usual joke that it was easier for me to get used to do that because it was what I always did. I was always afraid of going out on my own. I had always resisted help because I always defended my independence, but the constant help I resisted had made me dependent; had filled me with insecurity. I had to call my neighbor friends to ask them for help.
Then I thought of another suggestion of my friend: ask another friend who drove a car to take me and my broken electric wheelchair to a man who fixes appliances, so that I could go places where I couldn’t go with my regular wheelchair. I was reluctant to do that – where could I go with the fixed chair? Why go there alone? But I could also refute this argument. I could ask a BHA friend who’s retired to go with me. Defeated yet again. There was still another advice given by my friend: talk to the therapist who had worked with me before I became an outpatient at the rehab center and have a consultation with her about my slow-to-progress arm, hand, and fingers. So, I asked Eric for the name of the rehab company who had sent her, but he had forgotten it. As I looked for it on the web, I started feeling excited once again. Maybe I could ask this therapist to come and watch how my extremities were moving, and suggest new exercises that could cause progress.
Then, “my lightbulb turned on,” as we say in Argentina. Maybe the main obstacle I needed to overcome was my reluctance to do exercises repeatedly. Reluctance was linked to a sense of frustration, which was caused by tiredness, which was caused by frustration – a catch twenty-two. There was an easy fix for this: a dose of energy. According to my nurse aid, it meant raising my head and assuring myself I could do it. It was a long list of things to do, but I would do them, eventually. And until that time came, I could be patient, and leave impatience and frustration aside.
 
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Writing

3/17/2021

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​In the pre-injury years, I used to walk to a coffee shop to read and write. There, I read poetry and philosophy, and wrote a poetry book as well as a manuscript on foreignness, language, and memory. The last two were a pretext for reading, thinking, and immersing in my writing. This means they were a source of pleasure to me. The manuscript ended up as a weird mix of essays, poetic prose, flash stories, and poems. I revised it quite a bit and sent it to a few presses, who responded with a polite rejection letter. After my last attempt, my hemangioma bled.
I’ve recounted the complications I experienced, my subsequent symptoms, and my final discharge. Since I came home, I’ve been confined to my bed, surrounded by the walls of our erstwhile living room that serves as my bedroom. The wall to my right has a window, which provides light and entertainment – I watch people come and go on the sidewalk, with or without dogs on a leash and with or without children of all ages. While I’ve made quite a lot of progress walking, I’m unable to go places unmonitored (in case I fall), and since I still have a bad arm, I can’t wheel myself on my wheelchair – my good arm isn’t strong enough to approach a sidewalk that goes uphill. That means help, and help isn’t always available. Now that the days are getting warmer, at least I can go out on the deck and work and read on the computer and on the Kindle: the Kindle has been a solution for my bad arm (as I tell in another chapter). And when I’m tired, I come back inside, meditate in my bed, and go back to reading and writing.
When my brain started healing, I didn’t want to take up sending the manuscript to presses – I didn’t want to go back to that place that had meant so much to me. But finally, I recalled that one of my grad school friends – an old, close friend who meant a lot to me, both he and his wife – was a publisher. So, I asked him if he could read my manuscript and give me some editorial advice. He said yes, and made some great suggestions that I’m following. Rereading it has entirely changed my views on my “offspring”; I’ve discovered how much I’d idealized it. Besides revising the manuscript, I’m continuing to write my poems (the two latest books and this one are in Spanish, as are all my books), bit by bit. And I keep adding chapters to this blog and writing essays (also in Spanish) for an e-journal and a future book.
I keep doing my exercises with my nurse aid, but progress is slow: the door to the street has barely opened. In any case, the sole idea of getting to the coffee shop on my own, buying a cup of coffee, and sipping it for a few hours fills me with anxiety. So, I continue to lie in my bed, surrounded by four walls. But when I’m lying there, I read and write. Writing means building myself a world to travel and explore; a world where to seek shelter. Writing helps me resist falling into a bottomless pit. I can find pleasure in reading, revising, and rereading; reading to draw a path and traveling the path into the unknown, where the unknown is exciting because it creates a sense of expectancy. I’m confined to my bed, but my mind is free.
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Future

3/15/2021

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​A few days ago, Eric drove me to the Javits Center in the city to get vaccinated. My nurse aid came with us in case I would need help. Everything went smoothly, so we were on our way home after an hour. Since Nathan hadn’t come with us (he didn’t want to miss school), I called my cell phone to tell him I was fine, as I’d agreed to do when I left. He didn’t hear the ringtone because he’d gone out for a walk with the dog. So, the answering machine picked up, and my old (pre-injury) voice said the customary words.
My nurse aid asked whose voice it was. Eric answered it was mine. And it dawned on me that she’d always heard my (slurred, low) post-injury voice; she wasn’t familiar with my old one. Then, the thought appeared right away that no matter how many days and months I did my speech exercises, everyone who met me would always hear this voice. Would that mean that as time went by, I would get used to having two bad limbs? To having a permanent nurse aid? How long would it take for my brain to heal? I was fifty-five when my first hemangioma bled; I’ll turn fifty-nine in five months.
When I asked Eric for advice about trying to get an interpreter position at the school district, he enumerated a long list of reasons why I couldn’t get it. His reaction brought to the surface the fear I (consciously or unconsciously) had kept hidden deep in my mind and refused to acknowledge: I could never go back to work. How old would I be when, or if, I recovered? But besides wanting to have a job that paid enough to reassure me about our job security, there are other reasons for doing it: the need to be in touch with other people; the need to help instead of being helped; and the need to feel that I can also bring income to the household instead of incurring costs.
Maybe someday I’ll be able to recover my clients. Maybe, step by step, I’ll be able to move my left limbs and won’t need nurse aids. Maybe I’ll be able to step and walk. But to keep myself going, I have to stop thinking dark thoughts. I need to be sure I’ll eventually recover – be positive and patient, as Eric says. I need to stop swinging between two poles of anticipated conclusions: either I will be able to do everything, or I will always stay in the same place. I have to stop being anxious to heal, because I’ll be depressed if won’t. I need to take progress one step at a time, and be happy when it happens (as the neurologist friend of my friend suggested); avoid feeling guilty when Eric has to do all the things I can’t do (or at least, not that guilty); keep reading and writing; and as my nurse aid said, smile.
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Music

3/5/2021

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​Some years ago, before my injury, we invited Maria and Kevin to our deck to perform their music – a mix of tango and blues, as Eric describes it. Evenings were still mild, so we, Nathan, and some of our friends sat on our backyard to listen to beautifully played and sung tango blues. Maria and Kevin spent the night with us before travelling to their next destination, so we had plenty of time to chat and get acquainted. We became fast friends from one day to the next, and we stayed friends through Facebook.
Then I had the injury, and after a year or so, the pandemic fell on the world. Due to their failure to eradicate it, countries had to impose quarantines, and the situation got really bad for everyone who worked indoors. Musicians were primarily affected, and mainly those who had to travel abroad to perform, like Maria and Kevin. We really felt for them and wanted to help. We signed up on a crowd-funding service whereby musicians invite patrons to online concerts, among other things. That’s how we got the opportunity to watch Zalon, an online performance in which Maria and Kevin participated.
The performance takes place every year. Its organizer is Andrea Clearfield, a well-known musician and composer. She started doing it in the mid1980s in the manner of the musical salons of the nineteenth century and invited top-level musicians of all genres to play. With the onset of the pandemic, she quickly moved it to Zoom and changed its name to Zalon. This online transformation gave Clearfield the opportunity to expand her choice. At the same time, it gave my family and me the opportunity to come into contact with many wonderful musicians we hadn’t even heard about. It felt like an evening outing:  we watched while we ate dinner. We had to leave before it ended because it was time for me to take my meds and go to sleep, but we had truly enjoyed it. It gave us a feeling of contentment.
Yet It also brought back memories both happy and sad, and a sense of yearning for everything I’d lost. I could see Eric, myself, Nathan, and our friends sitting on the deck on a fall evening. The portable gas heaters we’d borrowed from our neighbor warmed the night as we listened mesmerized to Maria and Kevin do their magic with guitar and harmonica.
Maybe we’ll do it again. I’ll be sitting on my wheelchair on the deck, and my family and friends, on benches. Maria and Kevin will do their magic, and we’ll listen mesmerized.
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Pain

3/1/2021

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​Suddenly, a few weeks ago, I felt some pain on the front and back of my right ribs. At first it was mild, so I did some stretches on the bed (I sat with my but on the bed, bent my back from the waist down, and then got up very slowly, always with Eric’s help) and put a hot pack on my chest. But the pain got worse and worse. I realized what was happening when I was doing my arm exercises: I was compensating with my right rib muscles the movements I was doing with my left arm. All the progress I was sure I was gaining was, in fact, the product of my right muscles’ work! And when I walked, I noticed that instead of grabbing the crutch, I was gripping it and tightening my muscles as I gripped.
I stopped doing some of my arm exercises, but then the pain got worse, to the point that it hurt when I was coughing or spitting. No matter how many methods I tried, how many exercises I stopped, the pain increased and expanded to my armpit. It was so excruciating, that I could barely stretch my arm to grab things. The pain kept growing, so much so, that I started waking up in the middle of the night. Neither heat nor stretching on the bed could bring release. And the worse thing of all was that I couldn’t locate the source, and therefore couldn’t know what to refrain from doing or what to do to stop it. We couldn’t think of consulting a professional during the pandemic without my having been vaccinated. Fortunately, Eric was an athlete during a good part of his life and is able to learn from experience. So, he could advice stretches that would reduce the pain, and I added heat on my back ribs. Then, my nurse aid suggested some extra stretches and how to eliminate and modify the previous ones.
Step by step, repeated stretches and heat, and ceasing to make any movement that would increase it (such as writing on bed, which I was doing unawares), have reduced the pain considerably. I no longer feel it when coughing, spitting, and breathing deeply, but it always threatens with coming back; it hasn’t left my front right ribs, although it’s much more bearable. To keep it at bay, I need to do my stretches religiously, be cautious when I’m writing and exercising, and wear an ice pack on my back after working out and a hot pack when going to sleep. The sole idea of suffering excruciating pain fills me with irrational fear. So, I’m taking all possible precautions. In any case, I may be suffering unbearable pain, but as Eric told me, nothing compares with the effects of brain injury.
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