The Organ

[AdamSmith]

What terminally ill children taught this doctor about how to live

Dr Alastair McAlpine asked some of young patients what gave them joy and meaning – their answers surprised him

Alastair McAlpine

Fri 9 Feb 2018 06.00 EST

 

Dr Alastair McAlpine asked some of young patients what gave them joy and meaning. Their answers were surprising and positive.

As a pediatric palliative care physician, I spend my days working with children who have life-threatening or life-limiting illnesses and their families.

Although many people think of us as the harbingers of death, in reality, doctors like us aim to maximize quality of life, especially when that life is likely to be shortened. We recognize that these children are so much more than just their illness and that they are part of a family. We focus not just on their medical needs but also on their psychosocial and spiritual ones as well.

Last year, as part of my diploma in pediatric palliative care, I was tasked with evaluating the attitudes of my little patients towards life. I asked some of them what gave them joy and meaning. Their answers were surprising and positive.

In fact, they made me completely re-evaluate my relationships with friends and family. I now spend more time with the people I love and I tell them how I feel about them. I have tried to make kindness a priority in my life.

I decided to share some of the children’s responses on Twitter, to provide some perspective to the fractiousness that is so prevalent there. The response was overwhelming, to say the least (my thread has been retweeted nearly 100,000 times).

The kids were not hung up on “stuff”. What mattered were the things that we all intrinsically know are important, but often forget in the hustle and bustle of daily living. The biggest takeaway for me is that the happiest, most meaningful moments were simple ones that did not require vast sums of money or effort to attain, but instead embraced the importance of human connection. It was also surprising how frequently the so-called small things were the ones that turned out to have enormous significance at the end.

Here are the top six lessons that my little patients taught me about life:

1. Spending time with family and pets are incredibly important.

Whether talking, laughing, playing, or just sharing silence, time spent with loved ones and pets was priceless. Towards the end, the only regret many of the kids had was that they didn’t get to spend more time “with mum and dad and my big brother”.

2. Humor and laughter are vital.

Even though they were squarely facing death, these kids derived amusement from the same things that normal children do: silly antics; clumsy adults; slapstick humor. Laughing is so important for many reasons but key among them is that it reduces pain.

Finding levity in the face of overwhelming tragedy can be difficult, and some of the parents dug into unimaginably deep wells of courage to provide mirth when their hearts were breaking. One dad pulled funny faces through his tears. But it always paid off. And whether ill or healthy, children will always be delighted by farting.

3. Good stories told and read by a loved one offer inspiration.

The written word and vivid fantasies told with basic toys enabled children to create alternate realities away from the often sterile hospital environment. They were sources of inspiration to continue fighting, even when the “battle” seemed lost. After all, if Harry Potter could continue to face Voldemort, then they could defeat their own “monsters”.

Stories also allowed the children to construct a meaningful narrative to explain the often incomprehensible diseases they were so bravely facing. Many believe that our ability to create and share stories is what defines us as human beings, and these kids demonstrated that. Stories inspired, captivated and transported them.

4. Swimming in the sea, playing on the sand and eating ice cream (even on a cold day) are simple, memorable pleasures.

Children vividly remembered the simple pleasures that cost little except the effort of being truly present; the moments that may have seemed small at the time were often, upon reflection, priceless.

5. Children as young as four worried about what would happen to their parents.

Many of the kids had made peace with their fates but wanted to protect mum and dad from additional heartache. This role-reversal is surprisingly common and indicates that children are far more attuned to their bodies than we think they are. Death is the elephant in the room. Part of my job is to encourage honesty and to get everyone talking, even when it’s painful.

6. Simple acts of kindness were treasured and remembered until the very end.

Kindness, whether from the classmate who offered a sandwich or a nurse’s smile, was the virtue that made the biggest impact on the children. They loved kind people and remembered acts of kindness until the very end. The last words I heard from one little girl were: “Thank you for holding my hand when I was scared.”

None of these revelations are new or earth-shattering, but when they come from children who are bravely facing death, an extra level of profundity is added, which has prompted many (including myself) to re-evaluate just what is important with the very limited time we have. Now, if you’ll excuse me, I’m off to the beach to eat an ice cream.

https://www.theguardian.com/society/2018/feb/09/pets-laughter-and-kindness-lessons-on-life-from-terminally-ill-children

[AdamSmith]

My son is trans and polyamorous - here's what I learned from him

Claire Armitstead

I wasn’t sure I wanted to see a documentary featuring my son and his partner but I wanted to understand the paradigm shift millennials are spearheading

 @carmitstead

Fri 9 Feb 2018 09.32 ESTFirst published on Fri 9 Feb 2018 08.32 EST

 Iain, Ross and Pav in Love Unlimited. Photograph: Benjie Bateman/Fall Films/BBC Scotland

There’s a joke in my family that I joined Facebook to spy on my children, and they befriended me because they knew I wouldn’t bother. I’ve never been one to snoop on my nearest and dearest, and have always avoided writing about them, but two events this week have prompted a temporary change of heart.

In Tuesday’s books podcast, we marked LGBT history month by interviewing Christine Burns, a campaigner for transgender rights, about her history of the UK’s trans community. The next day, my son was in a TV documentary – deep breath – about polyamory.

I’d known for a while that Love Unlimited was coming but was not sure I wanted to see it. And since I live in London, and it was only broadcast in Scotland, there was every opportunity not to. There I might have left it, had it not been for the subtitle of Burns’s Trans Britain, which collects the sometimes bleak experience of trans people over half a century into 22 essays.

 

The news that my husband and I would be living in separate cities prompted a colleague to squeal: 'But who’s going to do his washing?'

The subtitle is Our Journey from the Shadows, and its point is that, in order to be understood, people first have to be seen. In the podcast studio, after the recording, Burns launched into a good-natured rant. Wouldn’t it be refreshing, she said, if just once an interview on trans issues didn’t have to start back at square one, explaining the terminology and addressing all the popular fallacies: “We’re always repeating the same answers to the same basic questions that have been asked since at least 1958.”

Love Unlimited wasn’t about trans people, but about life choices that challenged traditional thinking about relationships. The Oxford English Dictionary traces the word polyamory back to 1992 and says it is not to be confused with casual recreational sex, serial monogamy or swinging. My 24-year-old son was one of a dozen or so young people – gay, straight, bisexual, trans and cis – interviewed about love lives that to them seem entirely normal, but which all involve the possibility of committed partnerships with multiple lovers.

The interviewees included three gay men, two of whom work as nurses, who are filmed whiling away an evening with board games in their Edinburgh flat before retiring to their two bedrooms (there isn’t room for all three to sleep comfortably in one bed, and shift work means often only two of them are in anyway). Their setup is known in polyamorous circles as a triad or “thruple”. What, they say, could be more ordinary?

My son’s arrangement is a daisy chain, in which each person is free to have other lovers while remaining committed to each other. He currently has only one partner, but “they” – the pronoun of choice – are also in a lesbian relationship, so I resonate strongly with the splendidly upfront mother of one of the gay nurses as she recalled her initial reaction to the introduction of a third partner: “[I thought] that’s my baby’s man … Does this mean they’re not going to get married? Is my baby going to be lying in bed alone at night crying because his partner’s not there and is away shagging some other bloke?”

But that maternal worry isn’t going to disappear because I try not to think about it. The film says my son and his partner regard themselves as non-binary “in that they identify as neither exclusively masculine nor feminine”. Wrong, says my son, when I discuss it with him: they see themselves as neither exclusively male nor female, but his partner strongly identifies as femme.

Such delicate distinctions can wrongfoot the best of us. Pronouns, in particular, have been an issue in my household since my son came out as trans. I am clumsy in my attempts to negotiate a way around “he” and “they”. Childhood anecdotes in particular frequently leave me blundering back to “she”. I am amused by their description of each other as “beaux”, as the word transports me to my teenage infatuation with the Regency romances of Georgette Heyer.

There’s nothing new about being conceptually moored to our own pasts. Back in the 1980s, my father was horrified that I was not planning to change my name after getting married, while the news that my husband and I would be living in separate cities prompted a colleague in south Wales, where I was a trainee reporter, to squeal: “But who’s going to do his washing?”

To them, my relationship seemed as bizarre and dangerous as my son’s undoubtedly does to many people today – yet it turned out to be if not “the” then at least “a” new normal. While Trans Britain valuably documents the long history behind what can seem to be a new phenomenon, Love Unlimited points to a paradigm shift among some millennials that is clearly enabling them to flourish. There’s even a very chatty Dundee polyamory group, which meets up once a month over coffee and cake to debate “poly” posers such as how to deal with envy and jealousy.

What, the interviewees were repeatedly asked, were the main challenges of their lifestyle. Trust, they said – and timetabling. I for one feel greatly reassured. There will still be board games in the evenings.

• Claire Armitstead is associate editor, culture for the Guardian

https://www.theguardian.com/commentisfree/2018/feb/09/polyamory-trans-documentary-love-unlimited

[AdamSmith]

 

[MsAnn]

 

[AdamSmith]

 

[AdamSmith]

 

[RA1]

Interesting.  Is the biggest difference among all the Presidents of the last 100 years , that Nixon got caught AND suffered the consequences?  All of them did illegal things.  

Best regards,

RA1

[AdamSmith]

4 minutes ago, RA1 said:

Interesting.  Is the biggest difference among all the Presidents of the last 100 years , that Nixon got caught AND suffered the consequences?  All of them did illegal things.  

Best regards,

RA1

His were pretty bad, internally.

[Guest Larstrup]

 

[Guest Larstrup]

20 minutes ago, AdamSmith said:

His were pretty bad, internally.

Speaking of internally,  we’re so much far beyond that,  than we Could have ever imagined back then…… NOW.

 

[Guest Larstrup]

THE ABOVE WILL NEVER Happen again.. This president  Will require every ounce of our constitutional powers not  to remove him from office. 

Those powers are very questionable right now for most of us to believe in.

[Guest Larstrup]

2 hours ago, Larstrup said:

 

The only difference of the people in the Congress today, At this moment in time which we’re now suffering through and wondering how much worse this moment in time could possibly be if it were ever to happen again. With the Congress that we have today this helicopter ride will never happen.

happen.

 

[MsAnn]

8 hours ago, Larstrup said:

. With the Congress that we have today this helicopter ride will never happen.

 

 

After Brands departure the other day,  the possibility of someone replacing her, that will narrow the scope of Mueller's investigation, is all the more real...and frightening. For the first time, it appears that Trump might have the upper hand.

 

[AdamSmith]

6 minutes ago, MsAnn said:

After Brands departure the other day,  the possibility of someone replacing her, that will narrow the scope of Mueller's investigation, is all the more real...and frightening. For the first time, it appears that Trump might have the upper hand.

Ryan is a skunk.

But if the 2018s flip the House, I start to sense McConnell has had just about enough of Trump, and for the first time impeachment could be followed by conviction.

Call me a Dreamer. 

[MsAnn]

1 minute ago, AdamSmith said:

Ryan is a skunk.

But if the 2018s flip the House, I start to sense McConnell has had just about enough of Trump, and for the first time impeachment could be followed by conviction.

Call me a Dreamer. 

Thank you for this...I needed an infusion of "Hope"

[RA1]

2 hours ago, AdamSmith said:

Ryan is a skunk.

But if the 2018s flip the House, I start to sense McConnell has had just about enough of Trump, and for the first time impeachment could be followed by conviction.

Call me a Dreamer. 

And you aren't even illegally in this country, are you? 

Best regards,

RA1

[AdamSmith]

57 minutes ago, RA1 said:

And you aren't even illegally in this country, are you? 

Best regards,

RA1

[RA1]

Aha, a Russky counter spy with a dry back.  

 

Best regards,

RA1

[AdamSmith]

1 minute ago, RA1 said:

Aha, a Russky counter spy with a dry back.  

Certainly not a wetback. 

Sorry! 

[RA1]

No reason to be sorry.  I brought it up.

Best regards,

RA1

[AdamSmith]

2 minutes ago, RA1 said:

No reason to be sorry.  I brought it up.

Best regards,

RA1

See what you get! 

[MsAnn]

15 hours ago, Larstrup said:

 

 

I never really ever felt sorry for the man...He was his own worst enemy.

 

[RA1]

The secret is to know what you got when you get it. 

 

Best regards,

RA1

[MsAnn]

 She was right here, at our very own Broward Center for the Performing Arts..Who knew.

Now if we could only get Dion and Bocelli.

 

[MsAnn]

"My Heart Will Go On"
 

Every night in my dreams
I see you, I feel you,
That is how I know you go on

Far across the distance
And spaces between us
You have come to show you go on

Near, far, wherever you are
I believe that the heart does go on
Once more you open the door
And you're here in my heart
And my heart will go on and on

Love can touch us one time
And last for a lifetime
And never let go 'til we're gone

Love was when I loved you
One true time I hold to
In my life we'll always go on

Near, far, wherever you are
I believe that the heart does go on
Once more you open the door
And you're here in my heart
And my heart will go on and on

You're here, there's nothing I fear,
And I know that my heart will go on
We'll stay forever this way
You are safe in my heart
And my heart will go on and on