41 Comments
Apr 6Liked by Ros Barber

Placebo or nocebo, that is the question. Was Hamlet (or the person behind him) before his time with epigenetics in describing nothing being either good or bad, but thinking makes it so? 🤔

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Apr 6·edited Apr 13Author

I think about this quote often. In fact I was thinking about it yesterday lunchtime! But I think it has a different application. Thank you for giving me a new idea for a Substack post!

But no question, he was ahead of his time. His thinking was so advanced there are still many people without a chance of catching up!

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Apr 5·edited Apr 5Liked by Ros Barber

Thanks for the shoutout. A friend of mine is a researcher in Huntington’s Disease and I was literally just reading some literature he sent me that was talking about the role of epigenetics, even though it’s pretty much a inheritable disease—but epigenetic factors seem to differentiate how quickly which types of brain cells are impacted/mutate/die within the disease’s progression. Essentially, I think the deeper point that was clearer to me even when I was an undergrad, is that biological systems are full of complex feedback loops, so perhaps it’s not surprising that our genes, brains, minds, or perceptions of ourselves should be any different in the end. As they say in Buddhism, “the self doesn’t exist, it’s a delusion,” and I think even pre-science, that was the result of powerful observation and introspection at work in terms of how we’re all interconnect and hyper complex beings, pure reductionism basically always fails in these cases.

Also, that van in the library haha what?

I’m an accidental American in the senses that it’s where I happened to be born after grandparents immigrated there (something I’ve been reflecting on more recently), and adopted made up names for assimilation purposes (I guess?), which I’m still carrying, like some strange genetic mutation. Now I live in Canada, so I also have to go through the same tax crap in 2 countries.

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Huntington’s is a cruel disease. Interesting to hear that epigenetics is relevant there too: in something that really *is* genetic.

That van was something else!

I’m right on the edge of renouncing my citizenship, just to simplify my life, but they’ve made it costly :-;

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Apr 6Liked by Ros Barber

Something of a double coincidence for me here in that, literally out if the blue yesterday, I found myself wondering, had I made other choices in life, taken different pathways, whether I was fated to develop multiple sclerosis regardless (diagnosed at 48), i.e., a predestined fait accompli in my genes & DNA. Reading Ros' substack today introduced me to epigenetics (being one of the plenty of people who had never "twigged" to it) and flashed the thought back, although, other than a reference to cancer and bad luck, diseases weren't addressed. Although, you did just that spotlighting Huntington's. Now I've even more food for thought. Might take some time to digest...

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I'm always very interested in coincidences like that. I feel quite strongly that my urge to write on particular subject corresponds to certain people probably wanting/needing/whatever the right word is to read/know about such a thing, and so I just follow inspiration and see who shows up. I'm persuaded that collective consciousness is a real thing and that writers (of my variety at least) are tuned into. Maybe this week was for you, on some level.

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Apr 7Liked by Ros Barber

Depending on their depth, coincidences interest me as well. As I was replying to Nick Herman's reply and mentioning a "double coincidence," I didn't realize it was--at the very least--a "triple coincidence," not knowing: 1} as I was typing it, you were simultaneously responding to my first reply to you; 2} you said you often think about that particular quote of Hamlet's--as do I; 3} in fact, you had thought about the quote the day before at lunchtime, approximately the same time that my thoughts regarding MS occurred to me "out of the blue" (accounting for the leeway in time zones, and "approximate" depending on when you have lunch. :^)

I noticed your reply minutes after I'd replied to Nick, and was going to reply right back with the foregoing, but it was too late and I was too sleepy. Reading your second reply now makes me consider that perhaps my thoughts about my MS (now 2 days ago) weren't necessarily "out of the blue", if collective consciousness is a real thing, which I also feel, on some level, it is. In any event, on the one hand, I'm glad to have sparked an idea for a new Substack post. On the other hand, thank you for being so tuned in that you may have been urged to pen your "Reasons to be Cheerful...On being your own architect" post by (possibly) pinpointing me in that collective consciousness stream. However it works, I'm happy we both found inspiration it it.

P.S. In the 18 years I've lived with it, I'd never before considered the scenario that seemed to drop into my mind about whether I'd have contracted MS regardless of whichever path I may or may not have taken. I should clarify, however, unlike Nick's discussion of Huntington's--known to be an inherited condition--there are vastly different theories about the causes of MS: it's not known to be directly inherited, although odds are higher when other family members have had it. Other statistics abound: distance from equator (weird); race (more whites than blacks, more blacks than Asians, Native Americans, Alaskan natives & multi-race individuals. Hispanic/Latinx origin are among the lowest); gender (four times as many women as men). Basically, it's not known what causes MS other than a variety of genetic and environmental factors. Still, this path vs that path, if I'd married my first fiance at 18 rather than my second at 34 and where that might have taken me, just for instance... Don't know why these musings, if I can call them that, just began to cross my mind.

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Thank you for this detailed and fascinating continuation. I like the triple coincidence even more, with respect to timing etc. I am persuaded there is something in it. But I would say if so, then it is intended for your uplift and not your regret. As Nick Herman (and Gandalf) rightly point out, since we cannot change our past decisions, our power is in the decisions we make in 'the moving now'. A more positive outlook seems to lead to better health outcomes in numerous studies, and given how little we understand the mechanisms of MS, there is surely little to lose in adopting a positive outlook in spite of it and letting go of whatever unknown factors led you to develop it. Thank you for being here, and connecting with me, both in the 'ether' and these comments.

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Apr 7·edited Apr 7Liked by Ros Barber

Like you said, the pathologies are different. I don’t know in detail about them, and I have my own issues I also wonder about, but a useful mathematical idea that has always stuck with me is that some systems are only dependent in their initial conditions at Time X—and then things happen from there. There are infinite things that could have happened before that point in time, but it’s gone, and maybe there wasn’t much we could have done to control or affect much of them.

To quote Gandalf, “ All we have to decide is what to do with the time that is given us.”

Speaking as a person that overthinks, excessive musing is unhealthy.

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Apr 8Liked by Ros Barber

Thank you for touching upon various issues I raised so insightfully and succinctly. I do agree with you, and certainly can't argue with Gandalf. I'm lifting myself out of this slump.

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Apr 5Liked by Ros Barber

I heartily agree that it's possible (and desirable) to design and reinforce one's own habitual mental and emotional pathways. I've learned a lot from Dr. Rick Hanson, psychologist and Buddhist teacher, whose meditations (free online on Wednesdays and accessible later) help people notice, acknowledge and encourage habits of thought that lead in the direction of happiness and resilience. It's not simplistic - it's a gentle discipline and requires practice (a little like pruning roses). A recent suggestion was to notice moments of contentment, and then note how quickly a desire or craving for something creeps in and disrupts that mood. Interesting challenge!

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That is, indeed, an interesting challenge! I've been practising meditation daily (mostly!) for a few years now. My response to the anxiety that surged in me during 2020 was to double up my meditation minutes! I'm quite a strong noticer and manager of my own mood these days, but none of us are ever immune: emotions will still kick in. It's noticing them, and tending to that part of the self, that matters. I've not heard of Rick Hanson but it's great there are so many teachers out there who give their wisdom freely.

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Apr 5Liked by Ros Barber

You're right - meditation is not a panacea.

On another topic, I'm hoping to read your novel on Marlowe soon, especially after seeing "Born with Teeth" at the Oregon Shakespeare Festival - a play that depicts tussles (mental, emotional and physical) between Kit and Will as they attempt to collaborate on Henry VI in 1593. Once starting to imagine such seething scenarios, it can be hard to stop - hence my wish to read your novel!

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Yes, I've been hearing good things about 'Born with Teeth'. I wish there was a UK production I could go and see! I hope you'll enjoy The Marlowe Papers when you get around to it :-)

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The Marlowe Papers is a fabulous read and a very unusual book, Diana: heartily recommended! Jamie.

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Wow, you are an excellent reader, Ros. I try, and I've been told I have a gentle and soothing voice, but I can do better; I would like to sound as natural as you! Thanks for the inspiration!

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Thanks, Don! I used to be a terrible reader. In fact I embarrassed myself very badly 25 years ago at a poetry reading and decided to get some training. The gain who trained me is now my husband!

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Well, you never know where you're going to come across the next great work of literature. This is a four-sentence love story I thoroughly enjoyed! ❤️

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Even with the typo! The love story is even better in long version and I might just write it up, after all these years of it being a favourite anecdote. Thanks for the inspiration back!

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Apr 13Liked by Ros Barber

So Substack asked readers to chime in on their best read (on Substack) this week. I got so excited to cite this article by Ros; I reread to get clear about why I found it so charming, hilarious, disarming, unsentimental, pointing-at-the-ineffable, and finally, uplifting, as the title kinda' promised. By the time I was ready to respond to Substack's query after having taken my time to organize my thoughts, I saw the following. "Replies are closed. We'll do this again sometime!" read the notice with the overly cheerful exclamation point. I was so frustrated. Then I noticed that there were many comments so I decided to see what that was all about. Lo and behold, reading what you all posted here completely dissolved my frustration. Why? I asked myself. Why do I feel okay - no, content? The responses were something like being in a congregation or community ... well that's not precisely it either, but I do know that, whatever you call it, feeling *alone* was *not* part of the experience. Thank you all!

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I’m sorry you missed that window, not least for purely selfish reasons 😁 . But I’m glad you found, in the interesting community gathered in these comments, a reason to feel content. That is wonderful. The contributions here have been so thoughtful and thought-provoking.

Thank you, too, for your lovely list of adjectives about this piece.

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Apr 13Liked by Ros Barber

Hey Ros.. I love your craft. After a long long time I have come across such a wonderful writing.

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Thank you, Adi. I’m very glad you found me.

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So... What was the brain of the cell in the end? I think I missed that bit 😅

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The cell membrane! Hard to fathom, I know. I started writing about that and then realised it was taking me to a whole other area so I’ll go there some other time. :-)

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That is truly bizarre. Look forward to learning more about it!

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Ursual LeGuin would have liked this! In her novel The Wizard of Earthsea, the most powerful of the mages at the wizarding school is the porter/gatekeeper. Jamie.

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Apr 5Liked by Ros Barber

Reading this was a very nice way to start my day, so thank you!

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Thank you, Hudson!

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Apr 5Liked by Ros Barber

One way to be cheerfuller—can I suggest that you make a plan to get off Twitter and onto Mastodon, the open-source decentralised alternative? Or at least run both in parallel and compare?

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I’m not really ‘on’ Twitter anymore, though i’m keeping my account open so folk still there can find the link to me via my bio. I’ve moved my base of operations here, and I like it. Notes has done more for me in a week than Twitter has done for me in a few years! I’m not looking for another place to distract me :-)

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Apr 5Liked by Ros Barber

Hi Ros, epigenetics for me was also a game changer. I could never fathom how complex changes suddenly sprung into action but when I learned that our genetic blueprint can be affected by our day to day living and THEN be inherited. Amazing to think it was called junk DNA. Suddenly it made sense. I must send you details of a book I got from last year’s Hoe the Light gets In who spoke just about this topic and had recently written a book with his brother. He has had many arguments with Dawkins. Which is good as Dawkins is a very angry man in my experience and I have never quite understood why he thinks being an atheist (belief) is any more defensible then believing in God.

Anyway, I digress. The brain is a powerful tool. I’ve also never quite understood the problem with the placebo effect. As you say how cool that you can just believe something and it is. Trouble is it’s free so drug companies don’t like it.

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Exactly! The drug companies can't be invested in people fully recovering and thriving when there's so much profit in keeping them alive-but-sick.

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Apr 5·edited Apr 5Liked by Ros Barber

There is likely still a lot of so called junk DNA that every organism has/degree of (apparently?) pointless redundancies, but I know it’s also the case that what was formerly thought of as junk seems to have some uses that have been elucidated more recently. So ideas keep changing.

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Love this metaphor. At first, I bristled, worried it was literally a DIY piece to put another hard-working, underpaid architect out of work. But this is way better. 😊

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Ha ha! No, let's employ architects, for goodness' sake (quite literally). Let's have buildings of beauty that fill us with joy and not soulless blocks with no imagination.

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Hear hear!!

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The blueprint/architect metaphor appealed to me too. When I googled it to see if it was original to Ros I found a whole lot of links to sites telling me why the blueprint metaphor is now considered outdated! I'm not a biologist so don't ask me why but one article described the DNA as being more like a set of 'encrypted ingredients' than a blueprint. I expect that's fair enough although it seems to me that Ros's sense of the blueprint as a plan that can be epigenetically/environmentally modified in the process of application still holds. I think...? Jamie.

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It’s a simplified one, Jamie, and yes, borrowed from elsewhere. Bruce Lipton among others, whose book is about 20 years old already, shockingly! And yes of course the reality is more complex. But it’s good enough for my purposes here. The point being, DNA is not deciding our fate. Just like ‘ingredients’ aren’t the chef, and don’t make the meal!

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I agree that choices can change everything.

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It takes a fine writer to make me chuckle over a post about epigenetics (as well as giving me pause to reflect and wonder)! Thank you again, Ros.

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