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Practicing

5/25/2020

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​My first time at home was hard. As I mentioned before, my brain had a long way to go before being healed, and because of that, I had no control over my limbs or my abdominal muscles. But still, I wanted to recover the use of my body. The facility’s therapists had given me a long list of exercises to do. Despite the tiredness caused by Kepra, another of its side effects (my body had adjusted to it, but not quite), I wanted to do the most I could. When the neurologist had mentioned I was determined, I told him that “determined” was a euphemism for “stubborn” (one thing that I’d acquired with the brain injury was wit). I was very stubborn, which could be a disadvantage, but also be an advantage. So, I kept at it – breathing, swallowing, singing, reading, and closing and opening my left hand (or trying, at least).
I was eager to walk; walking (with a crutch, of course) would let me leave the wheelchair, and therefore give me a sense of autonomy. So, I added walking to my exercises, alternating with pedaling the bike at Eric’s insistence – against my protests, he claimed that despite their hurting my left leg a lot, the electrodes replaced my brain by stimulating my leg muscles, and would strengthen my legs and help them move. At first I used the bar on the deck to replace the forearm crutch, because using the crutch to walk required Eric’s help, and I couldn’t take that much of his time. And I refused to wear the cast (my stubbornness, again) to force my leg muscles to work to lock my knee.
Then, when the fall was reaching its end, Eric built a wooden contraption that had bars (made of stair banisters) and two-by-two pieces of pine wood (that stood on the bar) so as to avoid my walking outside on cold, rainy, or snowy days. At the suggestion of one of our nurse aids and Nathan, he added a harness and a zip line so I could walk every other day and alternate it with pedaling the bike. One morning I was walking, I suddenly realized I could lock my knee! Success encouraged me to do it every day, and I’m still doing it today. Now we’ve added the use of the crutch without the bar and with Eric’s help, when he has the time. But that’s going very slowly because I’m still very scared of falling.
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Discharge

5/23/2020

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​When my seizures were under control, I was discharged again. I was back home, but far from being healed. I couldn’t move my left limbs, or control my core; my body would always either tilt to the left or fall down. When I picked a book to read (my older brother had bought me an eye patch that would solve both my presbyopia and my double vision), my mind wondered. When I wrote with my right hand, my writing reflected my thoughts; spider webs spread throughout the page. I felt I was trapped in an immobile body, and I let out my anger on Eric – who was desperately trying to help me – and the nurse aids. My foggy thoughts weaved a fantastic story that had others as evil culprits and myself as a victim. Since I hadn’t been able to swallow for a very long time (I had a feeding tube inserted) and had suffered an infection (with a high fever and lack of appetite) for two or three days, my weight had gone down to eighty-seven pounds, but I stubbornly resisted every effort Eric made for me to gain weight.
            At the same time, I was going to the facility as an outpatient. There, I was learning how to swallow, speak, walk (with a cast, to prevent my left knee from buckling, and the physical therapist’s help), balance with my core, and use my left and right hands. Thanks to all the exercises I persistently did, I was gradually entering the adult world. Moreover, the blood in my brain was reabsorbing very slowly, so I was realizing I was having confused thoughts and fantasies. Yet, my cognitive ability continued to be diminished (and still is today, although it has quite improved), which caused me to misunderstand and forget. My brothers had to explain things to me over and over, and things would slip my mind like grains of sand in one’s fingers.
            But I kept going to the facility and practicing, and improved very, very slowly. After a while, my writing became legible, and I was able to put on a coat with great effort. I could pinch with my left thumb, and let the pill jar go with the help of the occupational therapist. And I could breathe, speak, and swallow. My body still tilted sideways, but I didn’t fall. I had to keep wearing the brace because I couldn’t lock my knee, so I needed help. Yet, the therapists’ threshold wasn’t that high, so they decided to give Eric and me a six-to-nine-month hiatus.
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Fever and Seizures

5/16/2020

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​            On our trip back to Beacon, my head started aching. When we got home, the headache increased. My brother took my temperature, and it was moderate. So, I took some Tylenol and went to sleep. The next day my temperature had risen considerably. Eric watched my eyes and cheek rapidly swell. He showed my brother, and my brother immediately said, “Let’s go to the ER.” From the ER, I was transferred to the hospital in NYC (at my brother’s insistence). There, I was admitted and administered IV antibiotics. After the infection subsided, I was discharged.
We went home, only for me to start having seizures again. Eric and my brother drove me to NYC. On the trip there, I started having repeated seizures. I became non-communicative. I lost consciousness, and came to in a wide multi-patient room. I was told that I had been given a dose of Kepra in replacement of Dilantin (the previous anti-seizure med), because it could last much longer in the blood.
I was so scared of having another seizure like the previous one I’d experienced, that I would beg every nurse who took the new shift to give me the med at the exact time, accurately calculated. I finally went to sleep, and it was midnight when I woke up. Since I misread the time on the clock, I thought it was already 8:30 AM. So, every half hour, I insisted the new nurse that she give me Kepra. The nurse got so impatient, that she showed me her phone screen displaying the different times when she should give me my meds, and then her watch with the actual time. I realized that it was much earlier than I’d assumed and felt very embarrassed. Hours later, we had developed a true fondness for each other.
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Waking Up

5/14/2020

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​Suddenly, I somehow found myself in the hospital, being taken to the operation room, although I couldn’t distinguish one building from the other. What I didn’t know was that my skull was about to be added a bone plate. The familiar steps were repeated, and I woke up with Eric at my side, looking at me. “Did it fail?” I asked, thinking a single operation had been performed in the same place, the hospital – not that I’d been transferred to and from the facility. I noticed that I couldn’t move my left arm and leg, but there was a slight motor improvement comparing to my last stay. I could hear my voice slurring, but it wasn’t as bad as it had been before. Yes, I thought confidently, it had been a single operation.
            I was transferred once again. My older brother, a physician, came to keep me company while Eric was going to work, and to help Eric take care of me. I was assigned operational, physical and speech therapists. Whatsapp and my new smart phone were great contributions: I could talk to my mother whenever I needed to, and it was a good help; and two of my friends in Argentina religiously sent me texts or voice messages, which made me feel supported.
This time the blood in my brain reabsorbed quite fast, and my cognitive ability slowly improved. Since the exercises were successful, the therapists decided that I could be discharged after I’d regained some of my abilities. A week later, Eric and I were taught the “dance” to help me to transfer in and out of the bathtub and the car. On the expected morning, my brother and I would wait for Eric to pick us up, and the two of them would take care of the paperwork. Discharge was fast approaching!
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May 14th, 2020

5/14/2020

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​Suddenly, I somehow found myself in the hospital, being taken to the operation room, although I couldn’t distinguish one building from the other. What I didn’t know was that my skull was about to be added a bone plate. The familiar steps were repeated, and I woke up with Eric at my side, looking at me. “Did it fail?” I asked, thinking a single operation had been performed in the same place, the hospital – not that I’d been transferred to and from the facility. I noticed that I couldn’t move my left arm and leg, but there was a slight motor improvement comparing to my last stay. I could hear my voice slurring, but it wasn’t as bad as it had been before. Yes, I thought confidently, it had been a single operation.
            I was transferred once again. My older brother, a physician, came to keep me company while Eric was going to work, and to help Eric take care of me. I was assigned operational, physical and speech therapists. Whatsapp and my new smart phone were great contributions: I could talk to my mother whenever I needed to, and it was a good help; and two of my friends in Argentina religiously sent me texts or voice messages, which made me feel supported.
This time the blood in my brain reabsorbed quite fast, and my cognitive ability slowly improved. Since the exercises were successful, the therapists decided that I could be discharged after I’d regained some of my abilities. A week later, Eric and I were taught the “dance” to help me to transfer in and out of the bathtub and the car. On the expected morning, my brother and I would wait for Eric to pick us up, and the two of them would take care of the paperwork. Discharge was fast approaching!
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May 14th, 2020

5/14/2020

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Complication

5/10/2020

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​My memories are blurred. There’s the first brain MRI. To reduce my anxiety, they gave me a peripheral muscle relaxant. Once I was inside the machine, they told me what they would do step by step through a microphone. I meditated. I felt good. Then, for the second MRI, they didn’t give me a relaxant despite my asking. There was no warning that preceded the excruciating sound. I screamed, begging them to let me free. The third one was normal.
 Further, my memories become still more confused. I suddenly woke up at the facility. I was overwhelmed by feelings of fear and anger against the nurses. I screamed and tried to escape. I woke up bathed in excrement while foreign nurses cleaned me. Fear constantly accompanied me. Then I was ready for surgery. Once again, I was brought into the operation room on a stretcher. I came to from what looked to me like a long sleep.
I was really disoriented by my memories. What went first? Which MRI corresponded to which operation? Finally, I could reconstruct what had happened. First, they did a brain MRI to map the region where they would enter to take the hemangioma that had bled over the brain stem. The surgery went well. Yet, after they closed the incision, they noticed I was reacting less and less. They did a brain MRI, and it showed that there had been a hemorrhage in the right occipital lobe – an expected complication. The hemorrhage had caused the brain to swell, and the swollen brain had brought about a coma.
They operated on the right temporal side, but the unexpected happened – there was no improvement.  new MRI showed another bleeding. They operated again to stop it, but I was still in a coma. So, they decided to take out part of the temporal bone in order for the blood to come out and the pressure to drop, and finally I woke up slightly. They put bandages on my skull to prevent the blood from flowing out; they would wait to insert the bone plate that would replace the broken bone. The team was wonderful. They reacted quickly to the danger that threatened me, and therefore saved my life. I’m told that when I came to, my left limbs were paralyzed, and the rest of my body behaved like that of a newborn baby –  I could neither talk nor swallow. That’s why I was moved to the ICU until my brain would recover. Then, I was moved to the facility.
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Operation

5/8/2020

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​ 
I was moved to the ICU by the surgeon’s orders. The bed was in a wide room that had a view of a wrought iron door and the city street behind it. If you looked through the window, you could see a bit of blue sky. The next morning the surgeon came to visit. He told Eric and me about brain hemangiomas – about bleeding dangers, their consequences, and the need for removal. I thought of the days to come and was very scared. What if…? My cousin relayed the advice she’d been given: to think about a satisfying thing I would do after the surgery was over. That way, the fear would vanish. I decided I would think of Nathan and myself dancing at his bar-mitzvah celebration. My older brother and my mother flew to the US to be there for the surgery.
            The day arrived. The anesthesiologist explained in great detail what the anesthetic she would give me would do. They rolled me in a stretcher into the operation room. They put a mask on me, and a gas started to come out. I inhaled it while envisioning Nathan and myself dancing in a large ballroom, and fell asleep.
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ER

5/3/2020

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​After a long and torturing journey, we got to the ER. Eric passed my arm around his shoulder, and I limped toward the entrance (by then, my left limbs were already inert). The receptionist behaved in exactly the same way as the other hospital’s receptionist, and a few minutes later I was on a bed in the basement. Handling his cell phone, Eric quickly switched the people whom he called – my brothers (who then called my mother), our friends. My mother called a friend, a prestigious psychiatrist, who had the surgeon as a colleague. Her friend talked to the surgeon, and then told her that we should mention the name of the surgeon’s second-in-command. Eric did, and a bed magically appeared for us. A friend of mine, a pediatrician, rushed to the hospital to keep me company in the basement until I would be transferred. I found myself in a new room. I had a place to sleep. Eric’s parents had very generously offered to travel from Canada to stay with Nathan so that Eric could spend as long as he could with me.
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Bleeding

5/2/2020

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It was early in the morning of March 23rd, 2018. My son Nathan was asleep in his room. My husband, Eric, and I were getting ready for our trip to Montréal (we had planned a long trip to visit neighborhoods, for the purpose of moving there). I called my husband, who was downstairs in the kitchen. The dreaded fantasy that would visit me every now and then came true – I heard myself speaking in a slurred voice.
I climbed down the stairs so as not to wake Nathan, and I felt dizzy. I’d seen double for some time, but I hadn’t paid much attention to it, for I’d considered it negligible. This time my voice was being slurred, I was feeling dizzy, and I was seeing double.
In the kitchen, I told Eric what was going on with me. We agreed that we should drop Nathan on our way to the ER. In the meantime, we would make every effort to avoid causing him concern. Yet despite my attempts, Nathan caught a glimpse of a change. ‘What’s the matter with you?’ he asked insistently, but I managed to control my slurring in my negative answers.
            Once we’d dropped him at school, Eric drove me to the hospital. We described my symptoms at the reception desk, and the receptionist immediately put me through. A male nurse stuck an IV in my arm, and they did a brain CT scan. The results displayed tiny spots compatible with metastases, so the neurologist ordered an MRI. She looked at it, and then told us the metastases were in fact slight hemangiomas. Hemangiomas are benign blood tumors that are lethal when they bleed. That’s why the neurologist suggested a vascular neurosurgeon. My questions to my family and friends produced an answer: the best vascular neurosurgeon in the country, and the hospital where he worked. We decided to go in through the ER so that the hospital would admit us.
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