ALS. Ice buckets. Challenges. Iceland.

Stacy died almost nineteen months ago, she lived with Motor Neuron Disease for three and a half years. Some moments from her life and struggle are cast in light relief in the posts on this blog. It was incredible and horror filled. 

She lives now by bouncing through the minds and splashing onto the hearts of those who knew and loved her, and those who have heard her story. She continues to have an influence now. 

Certainly in the recent weeks of furious global fund raising, awareness fostering and ice bucketing Stacy's lasting influence has been felt by many. Her name has been invoked by those touched by her journey who are soon to be touched by ice, and perhaps her story has been shared among the many stories of pain and courage drifting around the community. 

I feel a sense of responsibility on Stacy's behalf to make comment, and also have my own ideas and perspective on the conversation surrounding this evocative round of fund dumping and ice raising. Thanks for the challenges, and emailed questions.

My understanding is that you will have experiences in life, and your job is to embrace them with your full range of human receptors. That to me is the main point, face the experiences that are presented to you, don't turn away, perceive what you can. Truly experience. 

Some of these may be horrible, stand and experience. At times you may feel invincible, stay and experience. Life may be stimulating or exhausting, frightening or comforting, invigorating or disconcerting. Feel it, recognise it, experience it. That I think might be a significant part of your life. 

Perhaps the challenge then is to find a way to make value out of what you have perceived. You are of course the only person in the history of the world to have your set of experiences, no one else is as informed as you about your life. If you have been paying attention there might be something valuable you have learned. 

There is a chance this only makes sense for me, however it feels like it might resonate. Be brave and stay with the events, challenges, joys and suffering of your life. Be there and feel it with the spectacular ability you have, then see if there is value. If you can do that then I think you might be living a valuable life. 

So now I say, donate money or don't, encourage others to or don't, film your video and enjoy others or don't. Make sure whatever your experience is you are staying with it and feeling.  

   

Developments, adventures, adventurous developments.

I'm going on a trip next week. In some ways I've been on one for months now. Canberra was probably never going to be a permanent home for me and it seems like that is the way it is going to turn out. 

On Wednesday I'm flying over to Europe to play frisbee for a couple of weeks. There are some details here if anyone is interested: http://www.worlds2014.org/wucc/ I'm playing with a team called Colony, we will be good. 

After that there is a six week Euro trip planned. Italy, Sweden, Iceland, France, some mountains and then Germany. I'll follow that up with a stop off in the US on the way home. I think it will be pretty great. I'm going to write about it, and if any of that seems interesting I'll find a way to share it. 

Coming home will be a development as well. The new plan is to head up to Sydney for the medium term. That might be alright, we'll see. 

Canberra has been a really great place to spend the last six months. I've grown very fond of the city and despite its fairly aggressive detractors I think it has lots of positive aspects. I took this photo when I arrived at work a couple of weeks ago. I don't think it captured what I was experiencing at the time, however I'll give you a look and a description and you can decide. 

This place has atmosphere and hidden intensity. It is cosy and available to explore and understand. This requires some wriggling, and maybe some searching though. Beneath the veil that obscures many of its attributes from initial inspection, Canberra is can be a very nice, and very beautiful place to be. I'll miss it in some ways. 

For now though, adventure! 

Bah ba ba, bah ba da ba ba.

Sunday 15th of June

"It is the greatest piece of music created by our species."

That is what I was planning to say if the two Generation Y characters I was travelling with woke up and struggled to understand or accept my choice of driving tunes. 

The road trip had started nearly an hour and a half earlier at 5:35am. Pretty early for a Sunday morning, and impressively close to the planned departure time of 5:30am. Yeah! We headed north out of Canberra on a fresh, rather than freezing June morning. The rain was coming down with diligence, rather than real enthusiasm. The wet highway to Sydney was sparsely populated, and the few cars out there were all keen to enjoy their own piece of it in solitude. 

I knew the boys were likely to slide back to sleep once we were rolling, and when the hoods came up and heads went down around me I settled in for a morning drive with plenty of thinking space in it. Following on from a conversation earlier in the week the thought resurfaced that I should take a luxurious trip through Beethoven's ninth symphony. 

As the beginning stanza warmed to its nearly two hundred year old task, I imagined it simultaneously coaxing the boys off to sleep and accompanying me on my journey. As the kilometres slopped by under the car, the rain slowly relinquished its interest and I slowly increased the volume. By the final movement the outline of hills in the middle distance were coming into view against the steadily lightening sky.

The highway was still nearly empty and the east bound road seemed to be leading us directly into the building sunrise. Our unique country rolled over on its side of the planet, directly towards the warm embrace of the sun that in many ways is central to its definition. 

Daybreak was coming and I was sharing it with a spectacular piece of musical work. The Ode to Joy rollicked around inside the car and the resurgent sun ignited the large bank of low clouds that stretched above the open road. 

The natural and the human shared their brilliance at the same time and I was a joyful witness to the scene. I was happy and grateful to be alive and aware. 

The fire went out in the clouds, the notes fell silent in the car. I rolled into the service station and the young men woke up. "Beethoven was a good choice Mike."

It had been a wonderfully satisfying first half of the road trip. 

Bag End Birthday

As my father so tellingly pointed out in a recent birthday card, "even hobbits come of age at 33."

This was telling in that I am now 33 years old, despite the lack of large under hill housing inheritance, it was also telling in that Chris Neild is now just as Entish as always.

 

"I am honoured by your confidence; but you should not be too free all at once. There are Ents and Ents, you know; or there are Ents and things that look like Ents but ain't, as you might say."


Anyway that is probably enough fantasy for this afternoon. Mum and Dad's card was one of many thoughtful messages of birthday wishes from last week, and I'm very glad to have been the recipient of so much love. Thank you all.

It seems to me that one of the reasons birthdays are significant is that they form a natural point of comparison and marker in life's journey. It can be difficult to compare who I am now, or what life is like currently to who, how and what the story was in the past. We need significant changes to signpost our journey. If you move house, or finish school, these are easy points of reference, phases that can be understood and reflected on, compared.

Without those large events, recurring annual moments provide a natural and effective opportunity to think back, and maybe also think forward. This was certainly true for me this year. My 32nd birthday in May of 2013 was a different time. I was floating around in a loose time and space after a significant life phase, and before any real direction had materialised. I spent last year's event down here in Canberra with a lovely little community and experienced some wonderful, kind support.

It was a strange time, sad and also hopeful. Quite undefined, a space of emptiness that was inevitably going to fill, it was unclear though with what.

A year later I'm still not sure what my space will be filled with, it is however no longer empty. There is plenty going on for me this year and I'm really appreciative of the love and community I've experienced from new connections and old. My 33rd birthday was a happy one, I'm confident it will be followed by a happy year.


Finally, in traditional hobbit form I gave some presents on my birthday. Two lucky hounds were recipients of two pretty large cow bones from the school bone lab I did with some students during the week. It was awesome, enjoy the photos.

Love and thanks,

Mike

Good morning

Monday 24th of March

When you are having a good morning, it is pretty clear, you are having a good morning. Things work out nicely, or things kind of go the way they always go but because you are having a good morning it seems like they work out nicely. 

You know what I’m talking about, right? When you wake up you are either warm and cosy and happy with that, or you burst out of bed and get right into it, and you are happy with that. Sometimes you are on time, cruising along and at ease, other times you are late and languishing and at ease. Maybe it is a bustle, a rush, a flurry of activity and that is helping to form a part of your hyped up, pumped good morning. 

Good mornings only really need to have one thing in common, that you feel good about them. 

When I was driving back from the bakery slash coffee spot this morning with a warm drink and two soon to be hot crossed buns I realised that, yes indeed I was having a good morning. This realisation had been bubbling away in me from when I woke up, things were sometimes cosy, sometimes bustling and both seemed to fit in just fine. It was all feeling pretty good. 

Then as I turned from the quiet neighbourhood back streets that I had been enjoying onto the larger main arterial road it all ticked over from pretty good to just strait up good. In accordance to the shift I was about to make in traffic flow, I made a shift in music choice. Back from song 12 to song 7, the heart pumping, beat thumping, steering wheel taping one. Laced with memories of adventure and glowing interpersonal connection. Song 7, whoot. Steering wheel thumb tap tap.

As I approached the intersection that would feed me onto the large main road the traffic in front of me slowed into submission at the behest of a business like red light. I was planning on turning left in the convenient left turning lane and heading on my way unobstructed by the traffic lights, sweet! Wheel tap, wheel tap, foot tap. There was however, a problem. Three cars and a small truck were pulling up to stop in the left hand lane, blocking my turning lane, they were going to wait there for the light to change and then head straight forward on their way through life, and the intersection. Foot tap.

This was not going to be cool for me because song 7 is not a song to sit still to, parked impotent with a full sized car and a half car gap in front. I should have stayed with song 12, nothing wrong with chilling out to song 12 while waiting for three cars and a small truck to pull forward 2 meters so I can flow into the left turning lane and on my way. Wheel brush, light window sill tap. I really did think I was having a good morning, the kind of morning where a slight delay in driving progress just adds to the enjoyable time cruising behind the wheel, yeah. Sill tap, face itch. 

Oh. Oh well. 

Rapidly recalibrating my expectations I clicked on the left turning indicator and did my best impression of a guy steadily slowing to a song 12 stop. 

Song 7 kicked up a gear and refused to join me. 

The driver of the car directly in front of me may have been having a good morning too, I suspect I’ll never know. None the less, good mornings will have their way. With a slight shift forward and a generous adjustment to the right the car repositioned and a good morning making gap appeared in my life. I rolled gratefully through the gap and into the turning left lane, and with an intensity 8 out of 10 ‘thumbs up’ out the window. I blasted onto the main road and deep into a good morning. 

Song 7 pumped, my steering wheel received the rhythmic tapping of a life time and I rolled on home. Sometimes if you let them, good mornings just make themselves known. 

Hey, good morning you lot. Desk tap tap. 

Mike 

Today

Day 0

Monday 4^th of March

I was surprised at how strong my emotional reaction was this morning. In my mind I was prepared for Stacy to pass. I knew that it would be different to anything I could predict, however I have been thinking about today for years and I thought that would partially prepare me. Wrong. 

I experienced the full physical reaction that was beyond my control. It wasn’t immediate, however when I held Stacy something came pouring out with a force that took me by surprise. It was grief, pain, shock and loneliness.

It came in waves for the next couple of hours, when I was pressed closely to Stacy, when I was in the other end of the house, it came and went and surged and ebbed. It was unique to my experience so far. There was a flavour of the feeling that I used to get on a day that Stacy left to go back overseas during the first few years. 

After dropping her off at an airport and returning home to my bed the emptiness inside me would curl my body inward like light around a black hole. Like a leaf drying in the sun, the edges curling in towards the pit in the middle.  The vacancy, the cavity yearning to be filled. 

I saw the sky as the sun rose, it was a beautiful morning. I experienced some memories of Stacy that I hadn’t for years (That strange straight arm on the spot run she would sometimes do).  I was so grateful that the good memories came to me, I didn’t try, they came. She was always so wonderful to be with. I missed her and I smiled.  

That hole of loneliness was familiar, I had been there before, however today there were other things. The shock of change, a change that I still have only a weak understanding of. 

The pain of all her suffering that I witnessed from the closest of observation points. I witnessed it all and had to block much off. I couldn’t feel all of Stacy’s pain because I couldn’t afford to stop. She needed me to be able to do. At a moments notice, for an entire day. At any time of day and night, despite any other potential distraction, I had to be ready to do. I couldn’t afford to feel it all with her because mine was a task of activity, relentless activity with no control of the beginning or end. Feeling it all with her would have been paralysing. This morning I think I began to feel some of it again. 

The long wait for Debi to arrive was the hardest part of today. Stacy passed at 4:20am, Debi arrived at 3pm. For 11 hours we waited. There were some things to be done, but there was too much that had to hold until Debi arrived, she had to know next. 

Dave and I were standing on the shore of a disaster with a tsunami surging towards us. All we could do was brace for the impact. Once the wave crashed there would be more to do than we could handle, until then it was still and brutal. 

Stacy was so beautiful. Hauntingly still and bright, like a marble statue. Glorious to look at and magnificent to touch. Quiet and familiar, she looked like at any moment she would wake up and ask me to help with something. I found it hard to leave the room because for the last few months we have been in eye contact for 95% of the day. I didn’t want to be away from her, I knew she didn’t need me anymore, but I think I still needed her. I still do. 

It became easier for me as the day went on and we shared the news with Stacy’s world, Debi first and then out across the global community that Stacy has forged with her light. Caring for others is now my comfortable place to be. The thoughts, fears, pain and behaviour of other people is much easier for me to deal with than my own. Through the afternoon and evening I gratefully welcomed the disaster in everyone else’s lives as a mask for the disaster in my own. 

Stacy left the house at 7pm. I didn’t watch the men from the funeral directors move Stacy onto the trolley, nobody touched Stacy. I am the one who helps her, I wasn’t comfortable watching others do it. I haven’t shied away from any aspect of Stacy’s struggle as I have been fully involved with every movement and decision. To not be included was harder than all the exhaustion, frustration and physical and mental pain of the last 3 years. 

She left and I slept. Alone and very poorly. The empty pit returned, I curled around it.

Day 365

Tuesday 4th of March

It was much clearer how to feel a year ago. Significantly more uncomfortable, more distressing and maybe even more confusing, however it was very obvious that was the way to feel. That was the day to be inundated by feelings like that, no question, indulge, submerge, bask in the vast influence of disaster. 

Today I have significantly less clarity in my feelings. There is not so much disaster basking going on, I’m not overwhelmed by the all powerful rush of emotions. It's hard to bask in disaster when much that I experience is good, fun and happy. Perhaps I'm just executing a classic behaviour and looking back at a day in the past with all the clarity of time piled on top of it. Memory is not capable of recording all the doings of a day twelve months gone, so intellect takes over and says things like ‘oh yeah, it was was much clearer how to feel a year ago.’ Good one intellect. 

Today I share in a range of feelings. A nice human range of feelings and i’m glad for the fact. Tomorrow I suspect i’ll try it again. To all of you who read this and also experience a range of feelings today, i’m with you and thanks for sharing it with me. 

I burnt a candle last night. I don’t really know what it meant however it was good to have, thanks for the wisdom Mum.

Lots of love to you out there,

Mike

Birthday

‘Captain Courageous!’ yelled the small group gathered in the outdoor garden. Stacy surged forward into the crowd of her friends from the Starlight Children's Foundation. ‘The party is here!’ responded Stacy, immediately matching the new volume of the night. 

Captains Sparkles and Giggles, Sunshine and Silly were in the pub and living it up like only a group of professional attention seekers can. There was dancing on the tables, telling jokes on the dance floor and impromptu skits broke out in most bathrooms in the building. With enough Starlight Captains in one place a night out quickly ascends into a long running, real life performance piece in which volume and action competing for precedence.  

‘Elle’ girls mixed with Captains, family mixed with friends and Stacy stitched us all together with big smiles and more kisses on the cheek than there were cheeks to kiss. People posed for photos like models, danced like, well maybe models, and definitely drank more than they ate, like, well ok, like a dog might on a hot day. 

It all escalated until Stacy found a long umbrella in a corner and brought it to the dance floor. 

‘Hey, i’m going to do a routine for you.’ she blasted to the room and anyone who was listening. ‘Watch this!’

With the umbrella intermittently swinging around her head and then occupying the centre of Stacy’s broad swinging dance arc she ruled the dance floor. To Stacy there was no difference between people making a little space to watch her dance and people making a little space to avoid being hit by an umbrella. 

The point was people were making a little space, and into that space she poured her joy, enthusiasm and at times pretty fun dance moves. She pulled her friends into the act and the umbrella may have had the best populated dance card in the room. 

When security staff became involved in the interest of public safety, Stacy met them with charm and cheek. ‘Hi guys, its my birthday’. Smiling and swaying. With the umbrella proffered handle first, she had the last word with some wit and grace, ‘wanna dance?’

They didn’t, but Stacy didn’t mind. She partied her finest, calling all to her with love and energy. Stacy knew that her friends were a part of her life force and a great source of energy. She loved sharing her time and her spirit with a collection of fun friends and ‘little munchkins’ and this birthday was no different. 

Now

Wednesday 22nd of January

Canberra was beautiful tonight. I drove home after a dinner with the Neild Browns on the south side of town. The sun was setting and the light was delicate. Hills and trees, light and shadow. A brilliant orange sun and the fresh crisp air of a summer evening here in the capital. 

I thought of Stacy on the drive home. I have been thinking about her most days when I have been writing. It is different though, when i’m writing i’m remembering and attempting to record. Driving in the light tonight I thought about her, about her in the context of me. I’m didn’t feel sad tonight that Stacy wasn’t with me, I didn’t feel sad for me. I did feel the pain of her not being able to experience the beauty of an evening drive, a sunset, a summer night. 

She would have loved a night like tonight like she loved so much of life. I wonder what her experience is like right now. Does she experience? If so then I think it must be beautiful. 

I will be well in my life without Stacy. She was so good for me, her journey was a spectacular one and I was privileged to be there for much of it. She marked me clearly, and i’m changed for the better through that experience. 

It was a brilliant ride home, grace filled and beauty touched.