We are in control of what we make things mean.
We can’t control “external events” or other people. What we can do is choose our response to these events or to the behaviours of others. I think that my friend Mike has had to consistently choose his response in the face of what I consider some of the toughest circumstances a person would have to face. I am very grateful to Mike who agreed to share his experience and learnings from an extraordinarily difficult part of his life. Thanks Mike.
When disaster strikes in our lives we all undergo some form of management process. There is an initial superficial response; physical, emotional and mental. Then something else happens, something that can eventually be quite valuable.
My journey through disaster informed me about the world, and produced moments of clarity that I suspect may have eluded my comprehension otherwise. In this process I find great value. The following two part entry is a description of one of the many important realisations that continue to inform my life today, perhaps it will resonate with you.
Part one – Disaster
My wife Stacy was diagnosed with Motor Neurone Disease at 27 in 2009. She died three and a half years later. The horror and disaster of that period is beyond explanation here, however I will say that she suffered greatly, and steadily progressed from vibrant and vital to trapped and isolated. I travelled that journey as her full time carer and closest witness.
As Stacy and I attempted to deal with the challenge of Motor Neurone Disease there were many varied elements that demanded our attention.
- We battled to identify and maintain some form of internal equilibrium, a space of partial calm from which we could approach everything else.
- Distributing the news, specific updates and the emotional tone we deemed appropriate to our friends, family and community.
- Management of the practical elements of Stacy’s physical condition, eating, talking, moving around the home and out into the community.
- Handling the concept of accepting the diagnosis and developing a familiarisation with the predicted outcome.
- The need to source and investigate an alternative prognosis. We travelled overseas and trialled alternative treatment options abroad and at home.
- Adjusting to the changing details of her physical function, new home, new equipment, constantly modifying routines and techniques.
- Monitoring of Stacy’s mental, physical and emotional ability to interact with people.
- Selecting her exposure to the outside world, specifically the news and life progress of her peers.
These are some of the complex and significantly consuming tasks that we engaged in relentlessly for years. It was a process of constant problem solving and challenge negotiating.
In order to make sense of the following realisation and discussion I’ll label the activities listed above as ‘acute tasks’. I use the term acute as while these activities were recurring, they could be dealt with and managed in the short term and then set down, they required acute moments of attention.
Perhaps an example would be helpful in aiding understanding. Lets look at the first broad and borderline inaccessible point above:
We battled to identify and maintain some form of internal equilibrium, a space of partial calm from which we could approach everything else.
A conversation something like this occurred regularly.
‘Mike I’m scared’ said Stacy without prompting.
‘What is going on Stace, what are you feeling?’ I returned, bracing myself.
‘I keep going over what the nurse said about needing to get an electric wheel chair’ explained Stacy, her eyes searching mine for haven.
‘Right?’
‘I don’t want to be stuck in a wheel chair, I hate the idea’, fear and determination wrestled for control of her words.
‘Fair enough Stacy, it will suck a bit, it could also be helpful at times.’
‘Mike its terrifying thinking about not being able to move my body enough to do anything without help’, she openly explained.
‘I hear you Stacy. Do you want me to reschedule the appointment for later on?’ I prompted, hoping to seek a path towards calm.
‘Maybe we should just leave it as is, and then we can hold off ordering it until it is necessary’. Stacy’s inherent courage strived for the surface as she managed and resolved the immediate challenge.
‘We can do that, you don’t need to get anything that you don’t want to right now. Let’s leave it there and think about what is for lunch’, I answered with pride, relief and apprehension churning within me.
The spark of life and cheek that lived inside Stacy crackled.
‘Don’t worry about that, I’ve had an idea for hours’.
The elements that I’m attempting to highlight with that dialogue are: there were constant challenges and difficulties that had to be negotiated, and, the group listed above I’m calling acute because the challenge could in some way be managed and moved past.
It would be back. Stacy and I would regularly battle to identify and maintain some form of internal equilibrium, however in the immediate case it was handled.
Amongst these acute tasks there were other activities that demanded solutions, I’ll label this group of activities as ‘global tasks’.
- Finding a cure for the disease that was killing my wife.
- Taking away the constant pain that loaded her body.
- Permanently intervening with the emotional torture of knowing that she was going to die.
- Reducing the shaking fear she had of that unknown.
- Removing her feeling that she was alone, trapped and deserted inside her body, unable to communicate and unable to leave.
These massive challenges permeated all aspects of our life, they could not be quickly resolved and overcome. These global tasks constantly existed. They existed and called for my immediate and urgent attention. Screamed for me to focus completely on the essential and drastic situation.
This desperate and in some ways hopeless scenario endured for years. Stacy and I had so much to do, an all consuming puzzle of management across all elements of life. Acute tasks dominated every hour and a wall of howling global tasks constantly demanded attention. To negotiate an ordinary day with these constraints and obstacles required far more resources than I had available in my role as Stacy’s full time carer.
As my spirit thrashed with the need to save my wife, to muster all my ability and concentration on the major global challenges, it was constantly assaulted by my limits and the immediate daily acute tasks of survival.
There was a choice to be made, spend my energy and ability on the closest global task, or answer the acute task that just called for a solution. The reality is, this was a clear choice. You know what, I think it wasn’t actually a choice at all. The acute task must be done, the immediate needs of our life were so powerful that to resist even slightly always caused pain and distress.
Another example may prove illustrative here.
If Stacy had an itchy nose it superseded all other important work. No research, no phone call, no endeavour designed to improve the long term global outcomes of our life could be prioritised above helping to remove that immediate maddening feeling of discomfort.
An itching nose is not just an itching nose when it can’t be immediately scratched, it is a howling example of helplessness and epic physical destruction. It is physical torture and a gigantic mental and emotional trigger. It must be immediately resolved.
For a carer who is distracted or who decides to finish a sentence in an email before helping to scratch the itch it is disaster. A slight elevation in priority of anything other than the acute task of scratching Stacy’s nose caused her massive distress. I would feel negligent and mean spirited. A sinking feeling of failing in the only job that had ever really mattered to me. To be relied on wholly and to deny that responsibility even momentarily cast a shadow on my motives and character.
This was disaster teaching me. Repeatedly shocking me with the magnitude of my ability to be influential, and the depth of my failure when I wasn’t.
Alright, digest that for now brave readers. In part two I’ll talk about that concept of influence and how I think disaster managed to teach me a lesson that is useful to me today.
Anna Rogacki 