#my condolences for those who started the journey 20 years ago

[scuttle-buttle]

Chapter 11

WC: 2077

Rated: E

Chapter Tags: full on angst, discussions of emotional trauma, mild depictions of blood/gore, mentions of self h*rm & su*cide, mentions of child abuse, discussions of physical disabilities, institutionalization, some dialogue & plot canon to TV show, hurt/comfort

🧠

The rest of the conference went by much like the first day did. Both you and Laszlo bought a few books for your collections. An ease had settled over your conversations with the help of Sara and John's presence; you spoke more freely with each other. You tell yourself it is not because he's going soft on you or vice versa, but rather that you have found yourself in this imaginary bubble where you happen to get on well. It's inevitable that it will pop once you’re back at school and Laszlo will revert back to his usual callous state.

Laszlo. It still felt odd to think of him like that, rather than by his title. You couldn't lie, it gave you a sort of thrill. Even in your dreams you had only called him by his honorific. Thankfully you didn't have another dream after Friday. You couldn't escape the feeling that you'd said something incriminating in front of the man in question. So you chose to pretend it didn't happen.

Monday morning came and you headed to the train station. Once again he had secured a private cabin for the journey. This time you came prepared with a book since you had yet to replace your broken phone.

"Thank you again for inviting me to this, I really enjoyed myself. It was really nice of the department to foot my travel expenses, the hotel was really fancy. I may have helped myself to a mini-bottle or two," you joked.

"There is no need to worry about the department's finances; they were not involved."

You pause. He paid for you? Laszlo did say he would take care of the arrangements; but the four-star hotel, the private compartment train tickets, the admission to the conference, and every meal? Shit, that must have been a fortune, hundreds of dollars at least.

You don't know what to say, so you settle for an awkward "oh." A moment passes before you add "I appreciate that, um, I can pay you back. Might take some time but I can."

The professor is flippant in his reply. "There is no need, it was well spent for the research and knowledge acquired." He opens his book signaling the conversation is over.

You lick your lips. Fine then, I'll just consider it payment for emotional suffering and damages of the last eight weeks.

The first few hours of the journey were spent reading one of the new books you picked up at the convention. Occasionally you would peek over the pages at the professor. He was engrossed in his own selection; sometimes he would pause to write down a thought.

Around the seventh hour of your journey you had given up on reading anymore in favor of looking at the fields outside. The silence was comforting.

Laszlo had trouble concentrating on the book in his hand. He saw you as a conundrum. One minute you could be sociable and teasing with your comments, then next you were biting at his throat with your quick wit and fierce ideals. He decides that he wants to know what made you into who you are today. Now is as good a time as any.

His eyes on you cause a tingle up your spine but you ignore it. Laszlo breaks the silence; "may I ask a personal question?"

"You just did," you answer, still peering out of the large window. He huffed once, amused. At his following silence you face him. You raise your eyebrows to signal him to go on with his question. Curiosity grows at the thought of what he intends to ask.

"Twice now you have made implications of a traumatic past," he begins.

Bubble popped.

Interrupting, you snark "is this the part where you psychoanalyze me, doc? Because trust me, I've been through enough of that." You pick at the lint on your jeans.

Laszlo tries to choose his words more carefully the next time he speaks. "What I mean to say is, the first afternoon in the classroom where you defended that student you implied you had been witness to a trauma. You then displayed signs of anger and embarrassment before leaving prematurely. Yesterday you mentioned having entered a psychiatric facility. As an alienist I can't help but find myself curious about your experiences."

You slide your eyes to meet his from across the cabin. Your face is devoid of any emotion. "We all have our demons. Even you can't argue with that."

Your jaw clenches. Everyone had warned you. They all said he would try to worm his way into your head to figure you out. All the reviews, the gossip, everything. It was a big fat 'I told you so'. You give a pitiful laugh at the situation. "You know, everyone told me that you would pull this stunt."

He seems confused by your statement. "And what is that?"

"That you'd get inside my head and try to figure me all out or whatever. You already know I googled you beforehand, what everyone says about your methods. By now I assume you've done a little research yourself. I promise you there is nothing exciting here," you scoff and point to yourself.

"You would be correct in your assumption." You chew at your cheek as he starts. "I do know some of what happened in your past. Yet I also know that society likes to dilute the truth into something either more palatable, more entertaining, for people to consume greedily. What I want to know is what you have faced. How you have not allowed the experience to overcome you so much so that your humanity is erased like the characters I lecture on."

Eyes closing of their own volition you are thrown back in time to that night so many years ago. You didn't talk about it anymore. Bitsy knew of course, but that was the extent.

Laszlo waits. He knows this is likely to push you over the edge if your history with him means anything. Quite frankly, anyone would be tossed to their limit at his interrogation had they gone through what you had. John always told him that he needed to work on his bedside manner; that he had a habit of coming on too strong in his pursuit of learning the intricacies of the human mind. But your earlier comment about being sent to a so-called 'nuthouse' rubbed him the wrong way. It left a bad taste in his mouth. He needed to know. He needed to understand.

Laszlo can imagine the reprimand that he would receive from John and Sara for this. Just as he considers apologizing for his intrusion you open your eyes.

"She was fine. None of us suspected anything was wrong. I came home from having dinner with some… boy, and she had locked herself in the bathroom. She- she must have started over the sink and moved to sit on the side of the tub. She was hunched inside it when I got the door open. I pulled her out. Blood was… everywhere." Your voice is clinical as you explain.

"After, I shut down. So I checked myself into a psych ward a few days later when I couldn't get the feel of her blood off my hands. It's slippery, you know. And it smells. You wouldn't think so but it does." You clear your throat. "I did the therapy, took the meds they prescribed, all the standard treatments. Later I started watching true crime documentaries. I'd heard about exposure therapy so I figured the more I saw the gore, the less the image of my dead roommate would bother me. And it did help. The nightmares stopped after a while, I came back to school. I was better, just not the same.” You had watched the passing landscape as you explained. Turning to face him you speak again. “That's why those pictures didn't bother me. They weren't anything I hadn't seen before."

He contemplates you. The discovery and subsequent loss of your friend in this manner would no doubt cause lingering effects to your psyche. A stain that would forever remind you. "I offer my sincerest condolences. I do not presume to know what that would be like to experience, but I am glad you sought help afterwards. To make the choice to alleviate yourself of your own suffering where possible.”

As he says this he realizes that your anger towards the idea of being enslaved to unconscious impulse makes perfect sense. It explains why you focused so much energy on defending your belief in free will. That you have the power to choose how you carry your joy, your anger, your healing. It reminds him of how he held onto his own guilt and hurt, ignoring how it festered within him for so long. He feels as though he needs to share a piece of himself with you.

“I played piano as a child, quite well too. My mother hoped I would someday make a career of it. I vividly remember playing Mozart’s Concerto for Piano No. 20 in D Minor at a holiday party when I was seven years old. It was my favorite to play.... It requires two hands." You finally look at him. "My father...” He pauses to gather himself.

Now it is the doctor that cannot meet your eyes. As you listen you feel your confusion grow. How could he have been a talented pianist if he only had full use of his left hand? Unless..., the realization dawns on you just as he continues, his words slow.

“My father had two sides. One loving and the other brutal, the two often coexisting. It was something as trivial as putting me to bed, I recall... A game of tug of war. We were laughing…” He inhales a sharp breath. Already you can feel the tears begin to blur your vision. “I don't remember if he was drunk or if I said something that offended him. He must have pulled my arm behind my back.” Laszlo exhales shakily. “In small children, fractures can often affect…” he trails off, unable to finish. You can hear how he barely holds himself together.

Your heart aches for the broken man that sits in front of you. He never let on how much his arm bothered him, at least not within your presence. Suddenly you don’t see him as this rude, insufferable, obsessive man, but instead as someone that spends his life trying to protect himself. He projects his own anger and hurt so that he may, just for a minute, forget about his own demons. He wants to help others even when he feels he cannot bear to help himself.

But unlike you, he has to live with the physical reminder of his past every day of his life.

You stand and move to sit on his right side. Before allowing yourself to think too much of your actions, you place your hand atop his own, curling your fingers around his palm and squeezing delicately. You don’t bother wiping away the tears on your cheeks. “I’m so sorry, Laszlo;” the whisper is barely heard above the sound of the train. A second passes where you fear you have overstepped and offended him by touching the affected limb. When his thumb tightens against the backs of your fingers you know he is not. He holds you in place.

“You asked me how I kept my humanity. How does anyone really? We learn to take what we get and we carry it in a bag. Sometimes you have to drag the damn thing behind you. But eventually the weight gets less and less if you allow yourself to move forward, even if it’s still there with you all the time. I dealt with what happened years ago and it does still haunt me. It’s easier now than it was, but… I- I suppose I’ve learned from you too. Sitting in those lectures and hearing you talk. We can either let it haunt us for the rest of our lives… or we can accept it… and use the memory of our pain to help ourselves and others.”

“I’m not sure the choice is entirely in our hands.” His tone is mournful.

You turn to smile at him through your tears. His own eyes are bloodshot. “I disagree. If it weren’t, if we didn’t have the freedom to choose that, we’d all be murderers.”

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[jrpneblog]

A bit of a catch up

Well first of all I hope everyone is safe and well as we move into phase 2 (whatever that is?) of this horrible pandemic. Every time I cough or I feel a little bit warm I think I have caught the bloody thing but, up to now, all is well.In fact I have spent more time in the garden in the last 7 weeks than I have done in the previous 40 years. However everybody hasn`t been quite as lucky as I have been since March 23rd.

I wish to pass on my condolences to the family and friends of anyone who has lost one of their loved ones during this awful time and particularly to the family of Roy Bunce who tragically succumbed to Covid 19 a few weeks ago. Roy was an every game man and although that probably narrows him down to a few hundred the fact that he lived in Leamington Spa make his support for the club all the more astonishing. RIP Roy we won`t forget you. I, obviously, do not not know the names of all the North End fans who have been taken but my thoughts are certainly with all of their loved ones.

North End have certainly been playing their part as well with the PNECET team having already distributed over 300 hampers to nominated fans who are perhaps struggling to get out in these unprecented times, so well done to the club for that. In terms of the football, itself, there are many questions that are unanswered because, quite frankly, nobody, including the Government, is quite sure how things are going to turn out. North End have kept a fairly low profile during the last couple of months because there is really very little to say and they, like every club are waiting on the outcome of talks between the EFL and the Authorities. The Championship will be led in someways by what the Premier League decide and the stated intent of both the EFL and the Premier League is that three clubs will be relegated from the Prem and three clubs will be promoted from the Championship. If the season is terminated them we come to the question of promotion from the Championship. Clearly Leeds and West Brom would be promoted but who would go up with them? The proposal coming from inside football, and this has not been confirmed in any way shape or form, is that the teams finishing three to six would play a one off semi fial at a Neutral Ground. So that would be Forest v Brentford and Fulham v Preston. Two grounds have been identified for these fixture and they are Bolton and MK Dons. So it is not beyond the realms of possibility that it could be Fulham in the semi final in a one off game at Bolton behind closed doors. The mind boggles!

All this is, of course, is just speculation but as each week goes by the likelihood of playing the 9 remaing games diminishes and the likelihood of a quick fix finish to the season becomes more likely. We then, of course, get on to the question of letting fans back into the ground. The Government extended the furlough scheme the other day until October so that indicates to me we are in for a longer haul than we first expected and no way can I see fans being let back inside stadiums until at least November. That then begs the question of will they start next season in August and how will the clubs generate income? Who is going to buy a season ticket when they dont know how many games they are going to be able to see live? A very worrying time for the clubs as well as the fans and football may be very different by the time we are walking through the turnstiles at Deepdale. 

I heard a suggestion the other day that the 92 clubs might be divided into 6 divisions for next season with the top four divisions having 15 teams and the bottom two having 16 teams. this would be done by positional finish this season so with North End being currently 21st in the football pyramid we would be in the second tier.  This would create a 28 game season starting in November and finishing in May. The bootm two in the top Division would go down and the top seven in tier two would go up - this would return the Premiership to 20 teams for the 2021-22 season. Of course the issue is the money lost from the two teams coming down form the Prem into tier two whowould normally have stayed up...ie the teams finishing 16th and 17th. 

Confused? Yes me too!

However it all pans out it will be fundamentally different to what we all expected when we set out on this season`s journey back in August. The football authorities will certainly have to do a bit of blue sky thinking to sort this lot out but their chief concern should be the safety and well being of the players and not the money. Players and clubs will have to think and behave different like we, the general public, have had to do. Maybe when this is all over Football will take a good look at itself and realise their needs to be changes in the way monies are distruted in the game as the gap between the divisions is far too big.

For now, though. all that matters is that we all keep safe and well and look after those who need our help at this difficult and stressful time. Stay safe, keep well and I will see you all again when the smell of Wintergreen is in the Air!

[healthserv]

Being Human

By MANEESH JUNEJA

This is the most difficult blog post I’ve ever had to write. Almost 3 months ago, my sister passed away unexpectedly. It’s too painful to talk about the details. We were extremely close and because of that the loss is even harder to cope with.

The story I want to tell you today is about what’s happened since that day and the impact it’s had on how I view the world. In my work, I spend considerable amounts of time with all sorts of technology, trying to understand what all these advances mean for our health. Looking back, from the start of this year, I’d been feeling increasingly concerned by the growing chorus of voices telling us that technology is the answer for every problem, when it comes to our health. Many of us have been conditioned to believe them. The narrative has been so intoxicating for some.

Ever since this tragedy, it’s not an app, or a sensor or data that I turned to. I have been craving authentic human connections. As I have tried to make sense of life and death, I have wanted to be able to relate to family and friends by making eye contact, giving and receiving hugs and simply just being present in the same room as them. The ‘care robot’ that had arrived from China this year as part of my research into whether robots can keep us company, remains switched off in its box. Amazon’s Echo, the smart assistant with a voice interface that I’d also been testing a lot also sits unused in my home. I used it most frequently to turn the lights on and off, but now I prefer walking over to the light switch and the tactile sensation of pressing the switch with my finger. One day last week, I was feeling sad, and didn’t feel like leaving the house, so I decided to try putting on my Virtual Reality (VR) headset, to join a virtual social space. I joined a virtual computer generated room where it was sunny and in someone’s back yard for a BBQ, I could see their avatars, and I chatted to them for about 15 minutes. After I took off the headset, I felt worse.

There have also been times I have craved solitude, and walking in the park at sunrise on a daily basis has been very therapeutic.

Increasingly, some want machines to become human, and humans to become machines. My loss has caused me to question these viewpoints. In particular, the bizarre notion that we are simply hardware and software that can be reconfigured to cure death. Recently, I heard one entrepreneur believe that with digital technology, we’ll be able to get rid of mental illness in a few years. Others I’ve met believe we are holding back the march of progress by wanting to retain the human touch in healthcare. Humans in healthcare are an expensive resource, make mistakes and resist change. So, is the answer just to bypass them? Have we truly taken the time to connect with them and understand their hopes and dreams? The stories, promises and visions being shared in Digital Health are often just fantasy, with some storytellers (also known as rock stars) heavily influenced by Silicon Valley’s view of the future. We have all been influenced on some level. Hope is useful, hype is not.

We are conditioned to hero worship entrepreneurs and to believe that the future the technology titans are creating, is the best possible future for all of us. Grand challenges and moonshots compete for our attention and yet far too often we ignore the ordinary, mundane and boring challenges right here in front of us.

I’ve witnessed the discomfort many have had when offering me their condolences. I had no idea so many of us have grown up trained not to talk about death and healthy ways of coping with grief. When it comes to Digital Health, I’ve only ever come across one conference where death and other seldom discussed topics were on the agenda, Health 2.0 with their “unmentionables” panel. I’ve never really reflected upon that until now.

Some of us turn to the healthcare system when we are bereaved, I chose not to. Health isn’t something that can only be improved within the four walls of a hospital. I don’t see bereavement as a medical problem. I’m not sure what a medical doctor can do in a 10 minute consultation, nor have I paid much attention to the pathways and processes that scientists ascribe to the journey of grief. I simply do my best to respond to the need in front of me and to honour my feelings, no matter how painful those feelings are. I know I don’t want to end up like Prince Harry who recently admitted he had bottled up the grief for 20 years after the death of his mother, Princess Diana, and that suppressing the grief took him to the point of a breakdown. The sheer maelstrom of emotions I’ve experienced these last few months makes me wonder even more, why does society view mental health as a lower priority than physical health? As I’ve been grieving, there are moments when I felt lonely. I heard about an organisation that wants to reframe loneliness as a medical condition. Is this the pinnacle of human progress, that we need medical doctors (who are an expensive resource) to treat loneliness? What does it say about our ability to show compassion for each other in our daily lives?

Being vulnerable, especially in front of others, is wrongly associated with weakness. Many organisations still struggle to foster a culture where people can truly speak from the heart with courage. That makes me sad, especially at this point. Life is so short yet we are frequently afraid to have candid conversations, not just with others but with ourselves. We don’t need to live our lives paralysed by fear. What changes would we see in the health of our nation if we dared to have authentic conversations? Are we equipped to ask the right questions?

As I transition back to the world of work, I’m very much reminded of what’s important and who is important. The fragility of life is unnerving. I’m so conscious of my own mortality, and so petrified of death, it’s prompted me to make choices about how I live, work and play. One of the most supportive things someone has said to me after my loss was “Be kind to yourself.” Compassion for one’s self is hard. Given that technology is inevitably going to play a larger role in our health, how do we have more compassionate care? I’m horrified when doctors & nurses tell me their medical training took all the compassion out of them or when young doctors tell me how they are bullied by more senior doctors. Is this really the best we can do?

I haven’t looked at the news for a few months and immersing myself in Digital Health news again makes me pause. The chatter about Artificial Intelligence (AI), where commentaries are at either end of the spectrum, almost entirely dystopian or almost entirely utopian, with few offering balanced perspectives. These machines will either end up putting us out of work and ruling our lives or they will be our faithful servants, eliminating every problem and leading us to perfect healthcare. For example, I have a new toothbrush that says it uses AI, and it’s now telling me to go to bed earlier because it noticed I brush my teeth late at night. My car, a Toyota Prius, which is primarily designed for fuel efficiency scores my acceleration, braking and cruising constantly as I’m driving. Where should my attention rest as I drive, on the road ahead or on the dashboard, anxious to achieve the highest score possible? Is there where our destiny lies? Is it wise to blindly embark upon a quest for optimum health powered by sensors, data & algorithms nudging us all day and all night until we achieve and maintain the perfect health score?

As more of healthcare moves online, reducing costs and improving efficiency, who wins and who loses? Recently, my father (who is in his 80s) called the council as he needed to pay a bill. Previously, he was able to pay with his debit card over the phone. Now they told him it’s all changed, and he has to do it online. When he asked them what happens if someone isn’t online, he was told to visit the library where someone can do it online with you. He was rather angry at this change. I can now see his perspective, and why this has made him angry. I suspect he’s not the only one. He is online, but there are moments when he wants to interact with human beings, not machines. In stores, I always used to use the self service checkouts when paying for my goods, because it was faster. Ever since my loss, I’ve chosen to use the checkouts with human operators, even if it is slower. Earlier this year, my mother (in her 70s) got a form to apply for online access to her medical records. She still hasn’t filled in it, she personally doesn’t see the point. In Digital Health conversations, statements are sometimes made that are deemed to be universal truths. Every patient wants access to their records, or that every patient wants to analyse their own health data. I believe it’s excellent that patients have the chance of access, but let’s not assume they all want access.

Diversity & Inclusion is still little more than a buzzword for many organisations. When it comes to patients and their advocates, we still have work to do. I admire the amazing work that patients have done to get us this far, but when I go to conferences in Europe and North America, the patients on stage are often drawn from a narrow section of society. That’s assuming the organisers actually invited patients to speak on stage, as most still curate agendas which put the interests of sponsors and partners above the interests of patients and their families. We’re not going to do the right thing if we only listen to the loudest voices. How do we create the space needed so that even the quietest voices can be heard? We probably don’t even remember what those voices sound like, as we’ve been too busy listening to the sound of our own voice, or the voices of those that constantly agree with us.

When it comes to the future, I still believe emerging technologies have a vital role to play in our health, but we have to be mindful in how we design, build and deploy these tools. It’s critical we think for ourselves, to remember what and who are important to us. I remember that when eating meals with my sister, I’d pick up my phone after each new notification of a retweet or a new email. I can’t get those moments back now, but I aim to be present when having conversations with people now, to maintain eye contact and to truly listen, not just with my ears, and my mind, but also with my heart. If life is simply a series of moments, let’s make each moment matter. We jump at the chance of changing the world, but it takes far more courage to change ourselves. The power of human connection, compassion and conversation to help me heal during my grief has been a wake up call for me. Together, let’s do our best to preserve, cherish and honour the unique abilities that we as humans bring to humanity.

Thank You for listening to my story.

  Being Human published first on http://ift.tt/2sUuvu3