When the doctor was first describing her cancer, Katie Doble, 32, stopped listening for some time. Because she had a decision to make. Should she be planning her wedding or her funeral? Her boyfriend had proposed to her just ten days earlier. Katie went on to get married. She also prepared for her funeral but, thankfully, that must wait. Her first symptom had appeared in May 2013—"a strange vertical black bar swimming through her field of vision”. It was diagnosed as uveal melanoma, a cancer of the eye. The first line of treatment involved a “radiation-emitting metal disk placed in the back of her left eye”. As feared, that led to her losing vision in her left eye. On the positive side, her doctor said the chance of her cancer spreading was less than 2 percent. In April 2014, an ultrasound found no signs of metastasis. Seven months later, just after Katie’s engagement, new scans revealed that her liver now had a dozen lesions. Like most afflicted with the deadly C, Katie was anxious to immediately start the treatment the physician had suggested, the one that would have given her some 16 months to live. Fortunately, she had a rare advantage. Her father was a doctor, who was already exploring more promising options in the stage of clinical trials. On his advice, she refused the treatment and entered a trial at Memorial Sloan Kettering Cancer Center, New York. The trials beginFive months into the trial, her tumors had grown. She was moved to a second arm of the trial that added a second medication to the regimen. The side effects of the combination “kicked my ass”. But she braved it. Determined to overthrow cancer as the ruler of her life, she went skydiving. As she floated down, she tasted the salt from her “happy tears”. She had to exit the trial because the tumors continued to grow even after two months on the combination therapy. Then she joined a second clinical trial at UCHealth, Colorado in September 2015. That too she had to leave after one treatment on account of gastrointestinal complications. Given that it is not easy to access a clinical trial, and the heavy costs involved (estimated at $600 a month in 2015), most cancer patients hardly get to join one. Katie was already a unique case having participated in two. Over to microspheresIn November 2015, she opted for an FDA-approved treatment of radio embolization. Thirty million tiny radioactive beads called microspheres were injected into the blood vessels supplying the tumors in the right lobe of her liver. It worked! The tumors stopped growing and some even shrunk. Heartened by this, Katie took a break to focus on building a house, “as one does when you’re trying not to die.” She had outlived her doctor’s first dire prediction, but the tumors were thriving in the untreated left lobe of her liver. So, she joined a third clinical trial, again at UCHealth. That trial too went on to fail. In September 2016, they repeated the microsphere treatment, this time for the left lobe. The cancer gradually stopped growing. One morning in May 2018, she stumbled out of bed struggling for her balance. A brain MRI revealed that the cancer had now spread to her brain. Gamma Knife radiosurgery eliminated the tumor. However, her liver tumors were growing again. Going by a study published in 2019, “the four-year survival rate for Stage 4 uveal melanoma patients is only about 2 percent.” By now, Katie had taken part in three clinical trials and also received three additional treatments. Yet three or four tumors persisted. Arming the immune systemIn July 2020, Katie started her fourth clinical trial at the University of Pittsburgh Medical Center. Dr Udai Kammula, the doctor leading the trial, had been after uveal melanoma for almost a decade, because it is “so devilishly difficult to fight”. Dr Kammula injected her with 111 billion new T cells, after first wiping our Katie’s own immune system. A month after the procedure all tumors were gone or shrinking. The one which did not was surgically removed. Finally, Katie was cancer free. Today, she works as a recruiter and gives talks to pharmaceutical and biotechnology companies and nonprofit cancer organizations. She lifts weights and rides her exercise bike when she and Nick are not enjoying golfing, biking and hiking. “Had I made the choice to not get a second opinion, I would be dead,” Katie said. What if Katie were in India?How would Katie have fared, if she were in India? Is it possible for a patient in India, handed a grim prognosis, to take a chance with an experimental remedy that is under clinical trial? Dr Santam Chakraborty, Senior Consultant at Tata Medical Center, Kolkata, co-author of a paper on “Geographic disparities in access to cancer clinical trials in India” is not very optimistic. The best person to inform a cancer patient about a clinical trial possibility is their oncologist. However, as India does not have a very integrated healthcare system, the oncologist is most likely to offer trials running in the hospital they are attached to. According to Dr Chakraborty, given the limitations of the clinical trial registry in India, “finding a clinical trial which is appropriate for the patient is a difficult endeavor for the oncologist.” Serious limitationsIn the US and Europe, an efficient, integrated healthcare system makes healthcare records available to all centers. In India, if a patient undergoing treatment in Hospital A wants to undergo a trial on in Hospital B, they will have to undergo a full workup and could be turned away at the end of it for failing to fulfil the eligibility criteria. The patient could have avoided the hassles and the cost of transfer if the data were easily accessible to Hospital B from the records of Hospital A. There is also the larger problem that in India, as yet, “the clinical trial scenario is not geared towards providing really cutting-edge solutions.” In advanced countries, a new therapy is researched for decades in a laboratory before it becomes eligible for evaluation in a patient. In India, clinical trials are usually run with products already evaluated in another country. A pharmaceutical company may evince interest if and only if it is sure that there will be a market for the drug in India. Clinical trials in India mostly focus on finding new uses of existing treatments or evaluating efficacy of treatments that have been evaluated in the west or finding ways to make the treatment more affordable. This is in stark contrast to the scene, say in the USA, where a novel innovation could be on trial. “Even if I were aware that a trial very relevant to my patient is being run in an institution like Memorial Sloan Kettering Cancer Center,” Dr Chakraborty said, “I can offer that to my patient here only if the same trial is being conducted at a center in India.” Most early Phase I trials done in India are for “me-too molecules”, meaning medication already established outside. It is mandatory for every clinical trial to be registered with Clinical Trials Registry of India (CTRI). “As a patient, I can participate in a trial if I fulfil all the eligibility criteria, provide my consent and my physician is an investigator in the trial,” Dr Chakraborty pointed out. Katie shares to helpWhether in India, the US or elsewhere, there is no telling if every person who enters a trial will be blessed with a positive outcome like Katie was after all her trials. While everyone’s outcome may be unique, Katie has been sharing her experience with all. “I gave my first talk in 2017, giving an acceptance speech for The Courage Award from the Melanoma Research Foundation. That’s when I realized how much I loved sharing my story. It gives people hope. It now feels like it’s what I’m called to do. It’s my way of paying it forward and saying thank you to all of the people who have helped me along this journey. I don’t want to hoard the wisdom I’ve gained from this horrible experience and expect other people to just figure it out on their own. It’s really, really hard to navigate this. If I can help just one person and change the course of their treatment for the better, then it’s worth it.” It is never easy for the patient and the caregivers. Who helped Katie pull through it all? "I've always identified both Nick and my Dad as my caregivers. Nick is my moral support. And my big spoon! He takes care of me physically and emotionally. And my Dad is the one who has helped us navigate this journey and understand the decisions we’ve had to make. I designated them both as my medical powers of attorney because I didn’t want either of them to face difficult decisions alone." Do Katie and Nick have a prescription for those who are going through such tough times, so that they can cope better? Yes! Communicate and laugh! "We still manage to laugh our butts off!" Katie added, "one of my lasting side effects from all of my treatments and the abdominal surgery is that it really hurts when I laugh hysterically. So, when I get that keel-over, gut-wrenching laughter, I can’t breathe. And he [Nick] loves it!"
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How did the bullock cart always come on time to take us to the railway station? Then I was too small to ask and too busy trying to squeeze into a tiny space among the bags and the other members of the family. Nor do I know now; even my mobile can’t tell me. The cart would shake and sway its way for a long time past many miles of trees and farms until we reached the river. The river with clear water flowing past stones and boulders and fish that swam carefree. That’s where we had to get down, cross the river and walk the rest of the way to the station. The elders would get off and carry the bags, stepping confidently from one boulder to another. The whistling of the steam engine would urge us children to run, deliberately stopping once in a while to let the fish nibble at our feet. I look up the name of the that river. Wikipedia finds it for me. “The Kalpathy River, also known as the Kalpathipuzha, is one of the main tributaries of the Bharathapuzha River, the second-longest river in Kerala, south India. “One of the problems faced by the Kalpathipuzha, like most other rivers in Kerala, is illegal sand mining. This has left many pits in the riverbed, which leads to shrub growth. During summer, the river is covered by a green carpet of Water Hyacinth and other shrubs.” I am now in a big busy city. I can see two bridges, extending the road from one bank of another river to the other. Above those is another bridge bearing the metro rail. From where I am, I can see everything, and everyone is in a rush. No one has the time to look at the river, except when you want to fling yet another bag of garbage into it. The water is sluggish and black wherever it is not smothered by thick swathes of water hyacinth. This river used to attract so many birds. They are missing now. Did all the fish die? Right below my window, they are felling more trees so that we can have another road for more people. The river appears to pause and sigh. Fires in cities. Heavy rain in deserts. Lush green growth in Antarctica. There are more roads and more bridges. But we can hardly move because there are too many of us. We build and build. But we get time to live only in vehicles. The rivers now weakly carry the filth we can’t stop generating to the ocean where the mightiest predator is plastic. We can’t go back to yesterday. Perhaps, today, we can stop and look at the river. And look after it? Are we already too late? Is it tomorrow, no, tosorrow already? All images produced by artificial intelligence, which does not have a solution unless real intelligence gets its act together.
The money she tightly held in her hand was not enough for her ticket. Her plea “But that’s all I have, and I must go now,” did not move the guy behind the counter.
Seeing that she was short by just a few rupees, I offered to pay for her ticket online. She watched the whole process with suspicion. I handed her the ticket. She was about to give me the money but hesitated. She walked away a few steps, showed her ticket to a stranger, apparently asking him to confirm that the ticket was indeed for her destination. Then she walked back to me, gave me the money. “I don’t understand these things. So, I have to be careful.” She was apologetic. I was embarrassed. The bus started late. She had a found a seat where she lay curled up, hugging a small bag. I wondered if it would be presumptuous to wake her up and offer her a meal where the bus was scheduled to stop next, after a couple of hours. I must have dozed off. The driver’s loud voice woke me up. “The engine has failed. Please get down. I will stop the next bus. Please ensure it will take you where you want to go.” As I grabbed my backpack, I looked at the old lady. She was up but appeared unsure about getting down. I explained the situation to her. She waited until another passenger confirmed it. Obviously, I was far from winning her confidence. Or, perhaps, life had robbed her of all confidence in others. Now that we were in a different bus, I noticed that she did not sleep for a long time. She kept nodding off but would wake up with a start every now and then to anxiously check where we had reached. She lay down again when we stopped at a major bus station and the driver announced we would resume journey after 30 minutes. After 45 minutes, the driver was back on and started the engine. He revved it like mad, filling the bus with fumes but it refused to move. “Something is wrong. The steering is also faulty. I can’t take any risk. Please board another bus,” the driver announced not bothering to look back at the passengers. There were loud protests and so he consoled us: “You will get any number of buses from here, going wherever you want to go.” So, there we were, in the third bus, with a long distance to cover yet. I could see that she was determined not to sleep now. Maybe because of all the rattling which was worsened by the condition of the road. There were not many passengers, and the conductor was done with issuing and checking tickets. I moved next to him and struck up a conversation. “You think having to change buses twice is a big deal? Just last month, I was in a bus that had passengers who had to change four buses. Imagine, those many breakdowns within 200 kms," he said. “I am not surprised at all,” he continued. “Do you have any idea about the quality of the spare parts we get? They must be paying a huge price, and someone must be pocketing it, but the buses are not getting any benefit.” Before the conversation took a contentious turn, I tried to insert a positive note. “It is a good thing that they are introducing modern electric, air-conditioned buses now.” He laughed. “Electric? Air-conditioned? Do you know the cost of repairing those buses? Those are just not designed to run on our kind of roads. Maybe you can, but do you think people like her can afford those buses?” He pointed to the old lady who was now dozing, seated and swaying. “Now everyone wants a car, that too a large car. The roads are the same. Always damaged and always jammed. Do you think that is progress?” He smirked. As if on cue, the bus hit what might have been large pothole, veered off the road and came to a stop. This time nobody had to tell us to get down. We were all off the bus in a rush. I ensured the lady got down safely. The conductor asked if everyone was safe and unhurt. He got on the phone, trying to find out if and when another bus would come that way. As we waited, some used their lighter bags as umbrellas to shield from the harsh sun. Then I noticed her shuffling away. She settled down in the shade provided by a big hoarding. She used her bag as a pillow and prepared to sleep, unmindful of the stones and the dirt. She looked as if she was quite used to it. Involuntarily, I looked up at the hoarding. It showed the large face of a leader who had won the recent election. The text around congratulated and appreciated all the services rendered by him for the upliftment of the poor. The building is not that old. Yet, the missing lights and rubble all around suggest lack of funds and attention.
The lift stopped at a floor midway, a chair entered the lift, followed by two elderly ladies, one of them standing and walking with great difficulty. “I fell and had this operation,” she explained apologetically. “I just like to go down, sit there for some time and watch the children play.” The man of the house, who opened the door with a hearty welcome, looked to have aged drastically in a few months. A more subdued “Sorry, I forgot you were coming” followed the welcome hugs. His wife was visible through the open door of their bedroom, in a helplessly twisted posture on the wheelchair, with the caretaker combing her hair. It was clear she had not placed the visitor; the same one she used to greet enthusiastically whenever they met during their walks. There was a large cup of tea waiting at the table. The man brought two packets of biscuits. She was wheeled close to the table and her husband. Carefully he broke each biscuit into half, dipped it in the tea and fed her. At one point, she choked and coughed, causing panic all around. Her eyes were bright and steady on the visitors. Do you think she can recognize people? “She can’t talk. Perhaps she can hear. But I think her brain is as sharp as it always was,” he said. Her trembling hand firmly held on to chair handle as if she was afraid of falling from the chair. Her eyes remained steady, almost smiling. He spoke of his major worry. Not the food, that was being delivered regularly, like the medical supplies. “The caretaker is planning to go to her village for two months.” Life was impossible for both of them without the caretaker. “We asked my wife's regular doctor to help us. He suggested we should move to the new old age home he has opened. It was a relief for us when we could move to this small flat thanks to a friend. Now to move from here and spend a whole lot of money every month … we just can’t do it.” They are counting on the caretaker to find a replacement before she leaves. How long will the new person take to get comfortable with their needs? And to provide the constant care she needs through the day? Those are questions best not voiced. Outside the window, a large tree with clusters of white flowers blocks the view of a lively game of volleyball in progress. One of the spectators, or maybe more, would be sitting on a plastic chair. The flourishing trees swaying gently in the breeze, extend all the way up the gentle slope. If you can make it to the balcony, you can also see the sun, relentlessly setting. This was the 15th day after he was rushed to the hospital in a critical condition. Tubes and masks were keeping him alive. “We have already informed the whole family.” They were all coming from near and far. No one mentioned it, but they were coming to be around when the inevitable happened. “The good thing is his will is in place. So, no disputes later,” someone whispered. “Anything about organ donation?” came a hesitant question in response. “How dare you talk like that,” an elder member of the family screamed when she heard that. “We are trying to save him and not cut him to pieces so that someone else can live. We love him. We respect him.” But haven’t the doctors already indicated that his brain is dead, and he is being kept alive? No, nobody dared ask that question aloud. “Cremate me,” he said unexpectedly. He was old but not that old and fairly healthy. And cremation was not the common practice in his religion. “Wait! Donate all that you can, at least all the parts in my body that are working,” he laughed as if it was a joke. “Whatever is left give it to some medical college. Why waste wood or electricity when my body can teach some youngsters,” he laughed louder, though several others in that family gathering were unsure if it was appropriate to laugh. Years later, after he passed on, no one was sure how many lives his death touched. But some who came for the mourning rituals were aghast. “How could you?” That was his wish. “How do we pay our respects now when there is no body?” This is the wheelchair she used. Maybe it can help someone else now. And this walker he never got to use for long though he, more than all of us, were hopeful that he would eventually get back to walking normally or even running. We have sanitized this commode chair though we are not sure if it is okay for someone else to use this. Days or even weeks after someone dear moves on, these are common donations. Because those might help someone. Because no one wants a reminder of a dear departed lying in a corner. Donate lifeWhat is less common is the intention to donate the eyes, the heart, the liver, or any organ that may help someone else live a little longer or help complete a life or two. Donations that can’t be bought from the nearest shop. According to renowned neurosurgeon, Dr Mazda Turel, “There are innumerable reasons for a family to decide in favour of or against donating organs. In India, very few people make their intentions known when they are alive, and hence, it is up to the next of kin to take a call.” The latter makes it tougher. “In some cultures,” Dr Turel writes, “beliefs regarding life, death, and rebirth influence the decision to donate organs. Others believe that the body should not be harmed after death. In many societies, death is surrounded by rituals and taboos. There are superstitions that suggest tampering with the body can invite bad luck or prevent the soul from resting in peace.” Born, must dieLet us for a minute, shed our emotions and superstitions. Let us examine our body. It is a marvelous machine. However, it does not take long to decay and stink once it runs out of the fuel of life. The process of decomposition is said to start four minutes after death. Without blood circulation and respiration, there is excess carbon dioxide formation leading to an acidic environment. Enzymes start eating the cells from inside out. Released gases cause bloating and putrefaction (yes, that unmistakable smell of death). Finally, everything soft (organs, muscles, and skin) becomes liquid, leaving only the skeleton. A natural process, no doubt. That apart, are the final rituals the best way you would like to give respect to your own body or that of a loved one? Will your endInstead, if you will in advance that your organs be donated (or your family did so before it was too late) you could save up to eight lives, help two people see, heal up to 75 burn and wound victims or help someone restore their hand or face. It is a difficult decision for anyone, except you. Because, you have every legal, moral, and ethical right to decide what will happen to your body after you are no more. You are in no way changing the ordained course of your life by documenting this decision and letting your people know. And when this is known, it becomes easier to make transplants within a viable time frame: heart and lungs within four to six hours, liver within eight to twelve hours, kidneys within a day or two, and so on. Your life will end. No one can change that. But what you can change is how, after that end, your organs could help others begin a new life. Thanks to you. References:
https://mazdaturel.com/the-surgical-donor/ https://www.donoralliance.org/newsroom/donation-essentials/what-is-the-time-frame-for-transplanting-organs/ https://my.clevelandclinic.org/health/treatments/11750-organ-donation-and-transplantation https://www.aftermath.com/content/human-decomposition/ Do you love your credit card? I did! Way back then it helped me buy immediate requirements for the house that I could hardly pay the rent for. Back then when I needed to travel to earn a living, it got me tickets at a discount. Decades after we had started living together, some weeks ago, I found a few strange charges. Because I was not travelling as frequently as I used to, I was being penalized for not utilizing my benefits accruing from other purchases. Up the levels of indifferenceAs I could not figure it out, I wrote to them. When they responded, I found myself climbing the hierarchy of customer care with each response. Every email ran into some 15 paragraphs (yes, I counted). After the third or fourth response, I became more adept at quickly spotting that single short sentence that directly answered my question or addressed my issue. The card was to expire soon. Heart-breaking as it was, I suggested they ought not to bother renewing the card. That was not possible, or so suggested a response. Nothing to do with the silly heart but some technical issue. Then they told me the charges had been reversed. I did not want to strain my heart further by asking why they had bothered to charge me in the first place. So, half-way into my first month after that card expired, I called. Probably, I expected tearful cheers when I told them I wanted to renew. The voice was matter of fact: “We sent your card last month. But your address could not be located. So, it came back. Do you want us to send it again?” Huh? I did not think the voice really bothered that how far back my association with that card went. It was the immediate transaction that was on the screen. A couple of days later, the courier messaged the card was on the way. All’s well, that ends well? Ha! The courier guy is known. Did you ever attempt delivering the same card before and no one was at home? No, he said. This was the first time he was delivering this card. Surely, the bank must know better? They were sure the card went back. “Banks, cards,” he mysteriously smirked. Here, take twoThe reason behind the smirk became clearer the following week, when I got another message. My card was on the way and delivery would be attempted on that very day. What? Again?
Went through the steps to establish my identity with customer care yet again. Yes, I had accepted and activated the card precisely seven days ago. No, they never sent a second card. Soon, the courier friend is at the door again, calmly entering the code to cancel the delivery. “You are fortunate. You got only two cards. The next address I am going to I will be delivering the tenth card. Do you know we get paid less than 10 rupees for every card we deliver? And we are fined 5,000 if we fail to deliver for whatever reason?” As he politely refused the glass of water I offered that hot afternoon and walked away, I did not even bother to understand what was happening. My intelligence was too real and ancient for that. Are we using so much of coded intelligence that our native thinking is getting artificial? Or is the bug in the thinking that I am anything more than the number embedded on the piece of plastic? There was the usual hubbub when we descended the last slope from the tranquil tourist spot to the parking area. Vendors selling everything from mementoes to snacks were yelling in the hope of attracting at least a few customers before everyone went off in their vehicles.
Then came the sound of an old-style bus horn. No, it was not from the parking lot. It was from a small makeshift shop selling tender coconuts. Suddenly, we were all thirsty and hungry. As we went closer, he welcomed us all with a big smile and put aside the horn. Interesting, I thought. Instead of letting his own voice get lost in the cacophony of all the shouting from the other vendors, he was trying something different. I was about to compliment him for that when he used his fingers to answer my question about the price per coconut. He wrote it on his palm and then gestured—he could not hear or speak. After that it was a smooth conversation. Before cutting each coconut he would ask—just water or you prefer some malai also? The first sip of the coconut water instantly took me back in time, when my family used to have a large coconut plantation. When city folks like me were visiting, someone would climb a palm and bring down tender coconuts. The water that I had just tasted had the unforgettable tang of very fresh coconut. He gestured to me that every morning he climbed up a few palms in the vicinity and got fresh coconuts. There were still four coconut halves with the glistening white meat waiting to be picked up and eaten when there was a sudden downpour. The bus was parked a little distance away and everyone was eager to make a dash for it. Skip what was left and go? Suddenly, he pulled out a clean bag to put the meat in. I asked him to pack it. He refused. “My hands are not clean, you do it” he indicated. As the bus moved away, I wondered. Did I miss taking his photo? A selfie? Should I have got more information? It would have made such a wonderful post and garnered so many “likes”. Then the rain stopped as suddenly as it had begun. The few wisps of remaining clouds accentuated the blue that vied with the green all around to fill one’s eyes and heart. That was it. I realised the meeting with him was best stored in the heart, where it would stay far longer than on any screen. What if Humpty did not have a great fall? Because happy Dumpty was saved in the nick of time by the pail of water Jack and Jill were carrying? We are playing with rhymes for a reason. The thinking has always been repetition of good old nursery rhymes helps develop focus and vocabulary. Does that rationale extend to all learning by rote? A report by The British Psychological Society cites research to state that most little children are “insatiably curious”, constantly questioning and exploring (young parents would concur, for sure). If the children were to remain in this state they can outlearn adults, but. It is a very significant but because “by about the age of six, their unbridled curiosity starts to wane” which hampers their ability to keep questioning and solving. Now, a new work published in the Journal of Experimental Psychology: General has studied children aged three to six years and “found that simply varying the messages that were embedded in a storybook could make a difference”. Fishing for treasureThere were 138 participants in the study in the US and, “to broaden the cultural background of the sample”, another 88 in Turkey. The children listened to two versions of the same story of Sam following rules and instructions to search a group of islands for treasure. In the first version of the story Sam strictly went by the rules. At the end of it, when a participating child was asked a question, “the potential responses were always limited”. The second version, the “strategic curiosity” version, lefts things rather uncertain. The children could pick which island to visit and also had to keep an eye on the time. Unlike the “obvious” questions that followed the first version, there were open-ended questions at the end of the second version. Then came the application part. After the story, the children were introduced to a new game, which featured a virtual aquarium consisting of five fish tanks. Each tank had different hidden creatures, and the children had 15 minutes to find them. For the group that had heard the “traditional” version of Sam’s story, this meant "following the rules and checking for all your clues". For the other group, it was about "staying curious and paying careful attention to everything around you". While the two groups found about the same number of sea creatures, there were differences in performance. Those who were tuned to the “traditional” approach “often ran out of time to explore all of the tanks”. The “curious” group “prioritized visiting multiple tanks over deeply exploring individual ones and were more likely to get through them all”. The second group “spent a longer time searching tanks that appeared to contain relatively more creatures, even if it took some time to find those creatures”. This was a clear demonstration of greater “strategic persistence”, the researchers concluded. Revisit rote?That “strategic persistence” is valuable in the corporate world. So, in the world of grown-up learning and development, should Sam be taught the rules by rote, or be encouraged to question and rethink? Would that sacrifice discipline and progress? Or yield rich rewards?
What do you think, my accomplished friends in the learning domain? If I am in school, there is no room for questioning either Humpty or Jack. After all, my success depends on getting the answers expectedly right, to up-grade myself. That's what my young seven-year-old student had taught me all those years ago when I attempted to correct her homework. (“This is what my teacher wrote on the board…. Now, who gives me marks? Who gives me punishment if I do not obey?”) By the way, I do wonder what you are up above so high. How come the rain does not put off your twinkle? Why don’t you fall if you are diamonds? Hey, are you really stars or high-flying drones? 𝐘𝐨𝐮 𝐜𝐚𝐧 𝐚𝐬𝐬𝐢𝐠𝐧 𝐭𝐡𝐞 𝐜𝐚𝐫𝐞 𝐨𝐟 𝐲𝐨𝐮𝐫 𝐡𝐞𝐥𝐩𝐥𝐞𝐬𝐬𝐥𝐲 𝐮𝐧𝐰𝐞𝐥𝐥 𝐩𝐚𝐫𝐭𝐧𝐞𝐫 𝐭𝐨 𝐚 𝐟𝐚𝐜𝐢𝐥𝐢𝐭𝐲 𝐚𝐧𝐝 𝐬𝐚𝐯𝐞 𝐭𝐡𝐞 𝐫𝐞𝐬𝐭 𝐨𝐟 𝐲𝐨𝐮𝐫 𝐥𝐢𝐟𝐞. 𝐎𝐫 𝐲𝐨𝐮 𝐜𝐚𝐧 𝐚𝐬𝐬𝐢𝐠𝐧 𝐭𝐡𝐞 𝐛𝐞𝐬𝐭 𝐨𝐟 𝐲𝐨𝐮𝐫 𝐥𝐢𝐟𝐞 𝐭𝐨 𝐭𝐡𝐚𝐭 𝐚𝐧𝐝 𝐥𝐢𝐯𝐞 𝐰𝐢𝐭𝐡𝐨𝐮𝐭 𝐫𝐞𝐠𝐫𝐞𝐭. 𝐖𝐡𝐚𝐭 𝐰𝐨𝐮𝐥𝐝 𝐲𝐨𝐮 𝐝𝐨? “In the months after my partner, Alex, was diagnosed with dementia in 2019, more than one person advised me to 'save' myself. What they meant was that I should move Alex into an assisted-living facility and get on with my life. “Alex’s diagnosis followed months of realizing more and more urgently that something was seriously wrong. It was as if we had entered a tunnel in which the only exits were into doctor’s offices for tests and scans and increasingly concerned conversations. “This left me completely torn. Of course, I didn’t want him to get worse. But until he did, help was limited. I learned the hard way that there isn’t an exact correlation between a person being able to perform daily activities and being able to live independently, or even be left alone for an extended period of time. “Early in the pandemic, I made my own list, not of things Alex could or couldn’t do, but things from our former life that we could still enjoy. The list was modest — only four items: drinking tea in the morning, going on hikes, watching something on TV in the evening and taking the occasional day trip. This is the list that guided me through the long, lonely days of lockdown. “What I think about now, more than two years after Alex’s death, is that there is more than one way to save yourself. “Even as Alex’s world shrank, we could still have tea together every morning and watch TV at night. He could still take comfort from our beloved cats. He could stand in the woods behind the house and look at the light on the trees. He could live with someone who loved him, even in his diminished state. "In opting not to save myself from the burden of Alex’s care, I ended up saving myself from the burden of regret. And that is going to last me a lifetime.” Thank you, Sue Dickman, for this, straight from your heart! And thank you The Washington Post for publishing this. https://www.washingtonpost.com/wellness/2024/09/07/dementia-partner-assisted-living-caretaker/
Images credit: The Washington Post Jesse Defton, 38, a world-class climber, ascends bare rock faces without permanent bolts. Instead, he places removable metal anchors into cracks in the mountain and attaches his rope to them. It is a sport in which one's vision, the ability to spot minor fractures or grooves in the rock, is considered vital. Jesse is completely blind. And completely dependent on his wife Molly Thompson, 40. Jesse was born with a condition in which the light-sensing cells of his retina gradually deteriorated. Even as a child, he had only a fraction of normal vision. Even once he and Molly had become friends and regular climbing partners, she didn't realize that his vision was so limited. He rode behind her on a bicycle, albeit cautiously. He aced engineering courses that required lab work. When he read climbing guides by stuffing his face into the book, his eyes millimeters from the text, Molly thought, "Okay, so he's nearsighted." Then two things happened simultaneously. Jesse and Molly began falling in love. And he lost the rest of his vision. They said almost nothing about their feelings for each other. Jesse didn't say what he wanted, which was to spend the rest of his life with Molly. But he could ask her if she was up for a climb. The sport became an excuse to be together, without talking about being together. The idea of stopping after Jesse lost his vision was unthinkable. Molly speaks into the microphone in a near-whisper, constructing an image of the rock that draws on the climbing guidebook and what she can see as Jesse moves, explaining where he should reach next with his hands and his feet. She needs to remain calm, to exude calmness, even if she worries he might fall. Her own nerves, she knows, could trigger his. Sometimes, when she can't make out a hold, she pretends to see one, offering just enough broad guidance to keep Jesse from freezing up. Her feigned confidence conceals terror. There are some parts of the sport that he has become startlingly good at -- better than almost anyone with perfect vision. The reason, Jesse believes, is that he has a different relationship with the rock than a sighted climber. He is forced to pay more attention to its subtleties. Thank you, The Washington Post, for this story. The words (and the images) are all from the story. Even if you are not into climbing and blessed with good vision, please read the full story. Hopefully, it will make us more grateful for all that life has to and to better appreciate its subtleties.
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