Good and Bad Stories

Photo Credit : Tamara Gak Ted Talk, 2010

Heather Lanier’s daughter Fiona has Wolf-Hirschhorn syndrome, a genetic condition that results in developmental delays – but that doesn’t make her tragic, angelic or any of the other stereotypes about kids like her. In this talk about the beautiful, complicated, joyful and hard journey of raising a rare girl, Lanier questions our assumptions about what makes a life “good” or “bad,” challenging us to stop fixating on solutions for whatever we deem not normal, and instead to take life as it comes.

See all the posts connecting to people who seem to know what they are talking about when it comes to all of this.

Don’t Simplify

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Photo Credit : Jen Theodore

When I was first diagnosed, to simplify my story, I just called it ‘throat cancer’. Turns out it’s not. Turns out this is worse. (Personally, I sit in the camp that this is not a competition - it’s all horrible.)

Anyway - talking to someone, who in turn reminded me of The Real Story of Michael Douglas … well worth a read, particulalrly if you think you know his story.

I just posted something about how it is often too soon to talk about whether a story has a good outcome - or a bad one. I am filing this post into that same camp.

See my other Commentary here.

DayONE

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Photo Credit : Thought Catalog

DayONE is my ‘go to’ journal of choice. I was using it long before this all came long - but now I have a specific journal within the app - dedicated to this journey.

See all the Apps I have referenced.

The Rest Of My Life

Photo Credit : Kelly Sikkema

Today is the first day of the rest of my life.

How often do you read that? don’t get me wrong. I know what they are trying to say … it’s just that if today is a representation of the rest of my life … well, that would suck. Instead, think of today as the first day of the transitional part of my journey. Everything that I’ve been doing since this started is in preparation for today. And tomorrow. And the day after. And the day after that. This transitional journey has a very specific start day. When will it end? Depends how you measure it. We’ll come back to that.

See my other Commentary here.

Keep Sharing

Photo Credit : Markus Winkler

Small, even symbolic, achievements can be incredibly motivating and uplifting. It’s hard for anyone who isn’t you to intuit precisely what goals you might want to set, so …
keep sharing.

See all the ‘BackAcha’ posts.

It All Means Something

Photo Credit : Austin Chan

We get a lot of ‘CEO types’ in here .. and it’s hard for them.
One thing I will tell you … you are obliged to tell us of how you think and feel. You are responsible for telling us of any changes … no matter how small - because they are indicators.
Do not be stoic. I have seen lives lost because of this. Just because it’s 1:00am don’t think it will wait until morning … you must come in.
It’s just not worth not too.

See all the posts where I highlight the ’Things I Am Learning on this journey.

Dying

Photo Credit : Sharon McCutcheon

I am not frightened of dying, any time will do, I don’t mind. Why should I be frightened of dying There’s no reason for it, you’ve gotta go sometime.

Gerry O’Driscoll, Abbey Road Studios janitorial “’browncoat’

See all the pertinent Quotes that resonate and I am recording here.

What Can You Do?

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Photo Credit : Fabian Møller

Diet / nutrition … vitamins

Pain Management - don’t be a martyr … if it hurts - do something about it.

Sleep - get it. - use it. - have a look at the sleep cycle app.

Exercise - physio - speech therapy

Positive Mental Attitude

See my other Commentary here.

Sleep Cycle

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Photo Credit : Brett Jordan

An app I was using before all of this started - and gave up on. I still don’t really see a benefit from it - except for record keeping.

Now that’s a topic unto itself!

That’s why I am adding it here.

See all the Tools I have referenced.

Permanating

Photo Credit : Intricate Explorer There are two aspects of the Music category on this blog. ‘Inspirational’ and ‘Gorgeous’. This song - Permanating - has long been a favorite.

An extract of the lyrics;

Somewhere on the highway With a luminous moon Swimming after dark and then Awaken to you … Hold on Hold onto the minute And sing it And live it It’s always there … Hold on Hold onto the minute And feel it Believe it … And time is moving on And listening to the song We get older Together … And every time we breathe Another moment leaves us forever To the nether … Permanating Celebrating Now we’re levitating High above the clouds Yesterday Is the place where all your friends will always … Permanating Celebrating Now we’re levitating High above the clouds Yesterday Is the place where all your dreams are always

Steven Wilson

See all the posts that call out great Music you can use that isn’t ‘new age’. The Apple Play List