Refusing to live in fear

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.” ~ Frank Herbert, Dune

"Cowardly Dog" drawn by Adam

We've all experienced fear - a basic human emotion with a very basic function: to keep us alive in a dangerous situation.

If we're being chased by a lion (or in Adam's cowardly dog scenario, a hungry fox), a flood of adrenaline that heightens our senses and prepares us to run away fast is an extremely useful physiological response. Also helpful are the safety lessons learned from fear (like "don't go into that dark cave") that might keep us alive when similar situations come up in the future.

But everyday life is not often about outrunning predators, and if you ask people about their fears, lions and tigers and bears (oh my!) are not usually at the top of the list. Instead, our fears focus on things that are less tangible - failure, loss, pain, the unknown or unexpected, separation from loved ones - diffuse fears that can last much longer than a few minutes of fighting for your life. When these are the demons you face, an adrenaline-fueled "fight or flight" response is not so helpful.

A common topic in therapy sessions with my students is that emotions aren't wrong or right, they're simply how you feel, although it's useful to be able to name an emotion, and then logically understand how it connects to your actions and choices in the larger world. When you choose to let fear stay in the driver seat of your life, logic doesn't just take a back seat, it often jumps right out of the car ... and fear and panic-filled choices rarely take you where you really want to or should go.

"Running Scared" picture drawn by Adam

So what to do?

"Fear is the mind-killer. Fear is the little-death." ... these words from Frank Herbert's novel "Dune" often run through my head when I find myself letting fear get the upper hand in my life.

Fear kills joy and robs us of happiness in the present tense. It may sound cliché, but today is the only time you actually have - the past is memories and the future is imagination. If you make the compromise of saying "well of course I'm worried, look at what happened yesterday" or "anyone in my situation would be scared witless of what's coming next", you choose to lose the moment you're in. You sacrifice present joys, no matter how small, for the pale satisfaction of being proved "right" if the worst should come to pass in the future. The tough part about this is that we seldom understand, in the moment, that this is the choice we are making.

This was a lesson we had to learn early on in our family life. Our second child, our daughter, was diagnosed with cancer shortly after her first birthday. My husband and I were a few years out of school, barely used to being "mom" and "dad", no financial resources (actually negative financial resources since we'd been living on a post-doc salary) and two children under the age of three. It's not easy to fight fear when you're living in a paediatric cancer ward and all that you hold dear is in jeopardy - even harder when you both have the science background to understand exactly what the diagnosis means and how slim the chances of a positive long-term outcome are. So we had a choice, actually we had to choose again and again, day after day ... to live happy, to live our lives as a family in and out of the hospital to the best of our ability. And you know what? After the initial shocked weeks, we did it. I look back on the pictures from that time and I see us laughing and playing and having fun ... when we had to cry, we cried at night in the dark ... no one could have given our daughter a happier life than we did. And we didn't get a miracle ending, and we didn't dodge the pain and sorrow that came with losing her, but we have no regrets about the full and joyful life we lived while we had her with us.

No one knows how long they have with the ones they love. What a shame to waste days in a cloud of fear and anger and "why me?". Cry when you must, seek out solace from friends and family, but don't live in darkness and sadness. Find the joy, hold on to the funny and the sweet and the dear bits. Love the day you're in, love the people you're with, love the life you have. Look fear in the eye, stare it down and refuse to let it rule you ... and expect to choose and choose again each day.

Because today is the only day you have.


... and let me end with a quote that I heard a short while ago, at the beginning of another difficult time in our family ... I would love to tell you the source of this quote, or even the exact wording, but no matter how I search, I can't find it ... so let me just attribute this piece of wisdom to "unknown" and hope that you might find it as helpful and hopeful a piece of advice as I did:

"Doubt your fears at least as much as you doubt your hopes and dreams" ~ Unknown

(... and live the h*ll out of the day you're in)

Fear and Hope

 Today's post doesn't have to do with autism specifically, but it has to do with life and family:

Fear is an emotion we are all familiar with. We fear the unknown, we fear loss, we fear losing control of our lives. The hard truth is that many of the most important things in life are outside of our control, including the health and well-being of ourselves and those we love.

And so the challenging part: what do we do when we realize our limitations to control life and make it "safe"? Can we meet fear with hope and live our lives to the fullest not only despite having this knowledge, but because of it?

Today I have a guest blogger who is a husband and father - he shares the story of his wife and young family, a challenging life-threatening illness, and their life-affirming and hopeful response to the curve that life has thrown at them:

My name is Cameron Von St. James and I’m a husband to one of the strongest people I know. Eight years ago, after our only child was born, my wife Heather was diagnosed with mesothelioma – a rare cancer caused only by asbestos exposure. My wife’s chronic illness taught our family the importance of acknowledging and overcoming our fears, something that prevent us all from living life to the fullest.

This February 2nd marks the 8th anniversary of Heather’s life saving surgery, which involved a risky procedure requiring the removal of her left lung. It is a very special day to me and is considered one of the memorable days of my life! We’ve coined this day as LungLeavin’ Day.

The purpose of LungLeavin’ Day is to encourage and empower others battling their own illnesses and life challenges to face their fears! On this day we celebrate for those who are no longer with us, for those who continue to fight, for those who are currently going through a tough time in their life, and most importantly, we celebrate life! Each year, friends and family gather at our house around a bonfire where we write our fears on a plate and smash them into the fire to represent conquering our fears.

 This year, we are asking bloggers to participate in LungLeavin’ Day! We’ve created an interactive page that tells the full story of this special day, which can be found here: http://www.mesothelioma.com/heather/lungleavinday/

 I’d love for you to check out the page and consider sharing it on your blog to help spread the word about LungLeavin’ Day! It would mean so much to Heather and I.

So tomorrow is LungLeavin' Day - a great day for writing your fears on a plate and smashing them in the fire!

All the best to Heather, Cameron and Lily. May you celebrate this way for many years to come!

What's it all about?

Life is short. I know that ... and sometimes life is too short and people leave before we're ready to say good-bye to them, before they've done all the things that they hoped to do.

A friend died this week. Too young ... my age, in fact pretty much exactly my age (we used to joke that we were "litter mates", born in the same month, same year). I met him almost 25 years ago when we both worked at a school educating teens and young adults with autism. A good man with a wicked grin and a kind heart.

His loss leaves a big hole in the local autism community, and a far bigger hole in the hearts of the friends and family who loved him.

And today I'm once again thinking about how short life is ...

... my daughter died of cancer when I was 29 and she was almost 3. I couldn't make sense of it, couldn't see how to go on past that point. All of the things that had seemed so important - employment, income, professional standing - were blown to dust in this new shockingly clearer view of life and death. My only regrets were the times that I had let my fears and worries stop me from fully living, loving and laughing in the moments I had with her.

My work with individuals on the autism spectrum came after this point. When I deal with an ASD individual and their family, my primary goal is always to maximize the enjoyment of the present moment - it doesn't matter that things are not perfect, they rarely are, and really (as I frequently tell my students) perfect is a bit boring. There's always something that's going right, something that's funny and endearing and quirky. It's not naive or silly to focus on the positive, it's essential to helping people blossom and reach their potential. And you just don't know how long you have.

And so with this in mind, and in honour of my friend Roc, here's a cartoon drawn by Adam a few years ago featuring a baby and a skeleton (I think Roc would appreciate the humour):

Live your life fully with an open heart, laugh until you snort tea out your nose, let tears fall when they want to and leave your legacy written in people who count themselves better for having known you.