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Fear

9/28/2020

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​As the light from the window grows dimmer and dimmer, I start thinking that when night spreads across the room and surrounds me, it will be time for my fear to unfold. Then, I will lie still with my eyes shut until darkness will turn to dim and to soft light and then to dawn. And all the while, thoughts will be circling my mind. I will try to breathe deeply and focus on my body breathing. I will chase away my thoughts, but they will be faster than me, and will just keep circling and circling.
And I’m afraid of being afraid. I envision myself awake in my bed, motionless, with my eyes shut, both waiting for dawn and wanting to sleep. I try to answer the million-dollar question, why am I afraid? And I can’t.
At the beginning of my convalescence, as soon as the sun started setting, I’d get afraid. But I could guess the reason for my fear; I could link the words “darkness” and “death.” Over time, my fear vanished. So, I was sure that I had left my non-memories behind, and fear would soon be vanquished.
Yet, it’s alive and kicking, and even if death is still present in a variety of ways, I can’t find its link with darkness. Or is it that the non-memories are behind, but my brain’s prolonged healing fills me with a sense of helplessness? This sense of helplessness makes me fear the unpredictable future before me: the unknown detour that COVID, the election, and the Dow Jones will take; the fate of my loved ones; and the shape of climate change. Is that the reason why I’m not afraid of death, but of life?
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The Three Ps II

9/26/2020

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​Sometimes I wake up tired after a night I’ve spent awake turning things over and over in my mind, or because of a side effect (one of the many) of my sedative, and the sole idea of having to get up and start the entire daily routine of exercises makes me want to laze in bed. Why would I want to exercise? Day after day, week after week I’ve done the same regime, so much so that my nurse aid and I know it all by heart. I’m completely bored with it. As I sit up, I briefly toy with the idea of going back to sleep. But I know that in a while Eric will come with the meds, and my nurse aid will arrive and start making breakfast for me, and the exercises will follow one another like links in a chain until it’s time for lunch. So, I have to force myself out of bed. And I exercise without pause until I’m done. By then, I’m very tired and have to get back into bed to eat my lunch. And the next day I wake up and start all over again.
But something happens amid this seamless progression, something new and noticeable – a small change for the better, a show of progress. My arm goes farther back as it moves the resistance band. My wrist turns down a little more when holding the pill jar full of coins. My arm slides down on the bench more quickly. My leg crosses more easily over my right one, and climbs up the book without much effort.
And a sudden big, noticeable change happens, too: I’m walking to the kitchen and back without falling; I’m standing without support and don’t lose my balance; and my voice sounds clearer and louder than it used to.
These big changes didn’t happen unexpectedly; they were small and unnoticeable, and kept growing step by step until they were no longer small, like the first ones. They were just noticeable. And they make me think that if I detailed attention to each part of my body and noticed small signs of progress and, because of that, I continued to exercise that part, I’d suddenly find that I made big, noticeable changes, like these last ones. So, every time I’m angry and frustrated and want to call it off, I tell myself that disregarding my reluctance to get up, and doing the exercise regime until I’m bone tired and have to go back to bed, and repeating the same thing day after day until I’m sick of it, they’re all worthwhile; because after some time, I will suddenly find that I can speak loudly and clearly, and move my arm and wrist and fingers and walk with a cane easily. And the present will be part of the past.
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Butterfly

9/20/2020

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​Some days, when I’m feeling tired and frustrated and want to give up, hide my head under the pillow, and forget about injuries and disabilities, I close my eyes and daydream. These are the best dreams: I’m weaving a cocoon around my body made of light, warm silk; good rather than bad memories; layer over layer of good feelings; beautiful, open-air landscapes; and self-confidence and hope.
The cocoon will be snug and comfortable, and will ward off night fears and wakeful darkness. It will let my body and brain gradually heal, with no seizures on sight. And feeling safe inside my shelter, I’ll exercise my muscles one after the other: mouth, tongue, and epiglottis; shoulder and arm; wrist, hand, and fingers; hip and thigh; lower leg, ankle, and foot. And I’ll repeat the exercises, and repeat them and repeat them, persistent and determined.
Then, one sunny day, I’ll be ready to come out. I will break the covers around me bit by bit feeling calm and secure, and will step my way toward welfare. And as I’m stepping out into the sunshine, I’ll be certain that I will always can, like the little blue engine.
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Evening Out

9/17/2020

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​Yesterday, Eric, Nathan, and I went to a friend’s birthday party. I’d had an unexpected (minor) seizure more than a month ago, and the neurologist had told us that it could be triggered by lack of sleep. That’s why he prescribed a “mild” sedative that had a pile of side effects, drowsiness and tiredness among them. But I resolved to ignore the tiredness and go anyway;  she had turned fifty, and fiftieth birthdays only happen once in a lifetime.
It was the first COVID party we attended. It took place in the garden, so there was enough room to keep the prescribed distance, and all participants – both hosts and guests – wore masks. The hostess (a mutual friend) served drinks, and there was a plan to wash the glasses once the party ended. Strangely enough, what would have prompted a mix of criticism and approval before my injury, reassured me after it. COVID scares me: I’m scared of getting seizures triggered by the fever, one of the symptoms of the disease; of reliving all the emotions stirred by my trips back and forth to the hospital and my stays there; of the increase of my weakness and helplessness; and, certainly (and irrationally), of death.
Whether because I felt reassured or because the weather was mild – stars appeared one after the other in the clear sky -  I had a lot fun. There were plenty of friendly, interesting guests, and I enjoyed the conversation and the music (performed by two musician friends of the friend who had invited us).
The evening turned into night without my noticing. Suddenly, I felt very tired, and told Eric to push me home. A mix of tiredness and happiness accompanied me all along the (short) way there. Once he, Nathan, and I got in, Eric gave me my meds, helped me through my nightly routine, and kissed me good night.
These are my favorite parties: exciting, fun, and full of people I would like to get to know. That’s why ignoring my tiredness was worthwhile.
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Ruins

9/14/2020

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​On March 23rd, 2018, my head started to break. First the process was gradual, then it picked pace, dragging me down the memory hole. It took me a long time to restore my connection with myself. Now, with the lingering part of my brain, I have to pick up the pieces of my skull bit by bit, and slowly and carefully put them back together again, unlike the King’s horses and men, who tried and failed with poor, shattered Humpty Dumpty in that old Mother Goose song.
It’s like working on a jigsaw puzzle, making sure that every bone piece fits into each other. And some day, I’ll have a smooth skull that will look like new. Yet, the cracks will always remain invisible to the eye but visible to the eyes of my imagination and dreams. That’s why, when darkness comes, it brings a new, unfamiliar feeling –  a vague fear.
Perhaps the day will come when seizures will be rare; when I’ll be able to speak more clearly, and drink without coughing, and move my arm, and open and shut my fingers with ease, and walk (with the help of a cane, but walk in any case); and when fear will be impossible to evoke. Perhaps the day will come when my skull cracks will be invisible to me.
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Untangling

9/12/2020

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​When I try to place an event in the calendar within the stretch of time that goes from the bleeding of my first hemangioma to the present, all the months and years are jumbled up in my brain. I have (what I think it is) quite a distinct memory of it: I can name and picture the person involved and recall our exchange; I can tell if the days were sunny or cold; and I know if it took place in the hospital, the facility, or a doctor’s office. But I don’t know if it happened before or after my first operation, and I can’t mention the year. I remember eating in our backyard with friends who’d come visit and feeling the warmth of the morning, but can’t tell if it was summer or fall.
It’s as if I had a huge disorder of memories impossible to reorganize; as if events were heaped up like a tangled skein and I were unable to untangle it. I don’t know when I went to my internist and saw the neurologist; when I was waiting to be operated, and when the doctors took out the stitches. I asked questions and received a lot of useful information, and yet I still need answers.
I feel urged to place events in every box in the calendar, and this urge unsettles me – I won’t feel good until all these boxes are filled. It reminds me of my youth, when my unsuccessful attempt to untangle a necklace that had been stored deep down a jewelry box would frustrate and anger me, and I would throw the necklace on the floor and walk away. But nowadays I’m more stubborn and patient; if I can reorganize events in the calendar and fill all the boxes, I’ll restore my memory. And if my memory is restored, I’ll get my life back.
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Comparison

9/8/2020

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​I had a brain injury and, since I had it, I’m still suffering seizures and have to persist doing my speech, arm, hand, and walking exercises to achieve a slow progress. But of the two of us, Eric has suffered the most.
When I was home after my discharge, he had to deal with my confusion, that is, with my misunderstandings, faulty memory, and yelling. He would work long days and, besides, had to do all the things I had done around the house and no longer could do: cook, clean, do the small shopping (he’d gone at Trader Joe’s to do the big one), and take care of Nathan’s needs. And while he was doing them, he would constantly feel the sword of Damocles over his head; the same questions would run over and over in his mind: what would happen to the household if he got sick? Who would bring money every day? Who would take care of me? Who would bring the money to pay the nurse aid agency? Who would make my anti-seizure meds on time and ensure I was never alone when I did have a seizure? Who would prepare and give me enough food so that I gained the weight I needed to gain? (At that time, I was weighing eighty-seven pounds.)
He always says he can’t know what I experienced during my coma and what I’m experiencing now. But I can’t know what he experienced and is experiencing. I can’t know what it means to have a loved one who is on the verge of death. I can’t know what it means to have the entire weight of your family’s survival on your shoulders; to feel that the full responsibility for your family’s financial support lies on your hands. I can’t know what it means not to be able to share your innermost fears and thoughts with the person who’s closest to you because you’re concerned about her stress levels and her brain’s ability to heal, but you’re forced to hear hers as well as her doubts and despondency, and then comfort and encourage her.   
I faced near-death situations. I suffered loneliness, pain, and dread. I’m having to live with the memories and after-effects of my injury.  But my past and present experiences are nothing like Eric’s.
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Walking II

9/5/2020

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​Last Sunday, Eric, Nathan, and I had a Zoom meeting with my brothers and their families, and my mother. Suddenly, in the middle of a lively conversation, Eric said, “You know? Judy walked on her own today from the dining room to the kitchen and back, and didn’t fall even once.” As soon as he finished, I felt like crying.
Why would that happen to me time and time again? Why would my eyes tear up whenever I hear or tell this story? Perhaps it’s because walking is so important to me; because if I’m able to walk on my own, supporting myself with a cane for I have recovered my self-confidence, I’ll stop lying in bed; because my memories of lying in bed right after my discharge are so powerful.
Lying in bed meant being powerless, while walking meant being victorious against an enemy who kept me imprisoned inside an immobile body. Walking meant being able to go wherever I wanted. It meant revisiting places I associated with leisure and fun (though this meaning has changed today because COVID has made those places and activities disappear). Walking meant being able to reach the door, open it, and walk on the sidewalk. Walking meant freedom.
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Parties

9/1/2020

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​This 21st, I didn’t feel like celebrating my birthday; the rules were restricted on April, and it wouldn’t be that enjoyable to have people wearing masks and sitting six feet apart. So, we ended up having three parties instead: a celebration on Zoom with my side of the family (my two brothers and their families, and my mother) on the afternoon of the 21st; just the three of us on that evening; and with four friends on the deck on the 23rd.
They each brought a fruit salad made with fruits of the season, a yummy smoothie, and a cheesecake, and we chatted away until the sun set. Then, they sang Happy Birthday and I blew a candle that Eric was holding, we ate the cake, and it was time for me to go to bed. We sang two chants accompanied by a shruti box, and when we finished, Eric and I said our good-byes.
 I had three small parties instead of a big one, but I felt as happy and fulfilled and grateful as if I had had a big one. And I got simple presents from Eric and Nathan, Eric’s side of the family, and my friends, but they warmed my heart as much as if I’d gotten many elaborate ones.
I can’t put a name to it, but my whole body feels enveloped in a light, soft blanket that will stay there for me so I can bring it a little closer whenever I need to.
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