“I didn't sign up for this, I am NOT coping”
If this sounds relatable or familiar, you are in the right place. When my second child was born some 20 years ago I felt the same. We were happily married for 5 years, with a 3-year-old son, and a bouncing baby girl was expected to be his little “partner in crime”. But real life plays out differently. In a completely shocking turn of events, our daughter emerged into the world not breathing, and suddenly everything turned on its head.
The next 10 minutes changed all our lives as the subsequent lack of oxygen left our baby with brain damage, four limb dystonic cerebral palsy and complex care needs. She is today, a young woman wholly dependent on others for all activities of daily living, including washing, toileting, dressing, food preparation and other personal care. Our third child, a son born 3 years later, was subsequently diagnosed with Autism and ADHD.
Life has turned out “interesting” to say the least.
Desperation and the Weight of the Unknown
Within a couple of weeks, my daughter was sent home from the hospital and that’s when I REALLY struggled to cope. My wife and I were lost, isolated, and without hope. All I could think about was what her future would look like. Would she walk, could she talk, run with her friends, get married, or have children of her own? The list of unanswered questions was endless. The depths of this new anxious, low, panicked feeling never reached.
Over the two decades since my daughter’s birth, I’ve come in contact with many people who’ve experienced a change in circumstances around the illness or disability of a loved one. Any seismic shift in life very often becomes an incredible challenge to live with, let alone be happy within.
Coping Mechanisms and Common Responses
Call it grief, trauma, or whatever you like, I’ve come to see that the impact of an event like this on our mental health and wellbeing is very similar. The details are unique, but everyone who goes through a medical or health issue like this seems to experience some version of this: Everything was ok, until a HUGE life-changing diagnosis, physical illness or change turned everything upside down, and now, I want my old life back.
“I didn’t sign up for this”“I want the child/partner/parent I was expecting/had before back”“I can’t cope with this”
And this record very often gets played on repeat, with the pain and bad feeling ever increasing, ever deepening.
If this is you, I am sorry for the pain this has caused or is causing.
But I must tell you that you are NOT alone, and there IS hope.
Clarity Amidst Chaos
As the dust settled and our lives moved into a care and hospital expert routine, I could feel the anxiety causing more and more stress. No one seemed to be able to answer my questions or worries about the future any more than I could - which only seemed to make it worse. I started to see that I was only getting more and more helpless.
The best way to describe what happened next is an insight. At some point, I had some mental clarity and realised through internal reflection that my own thinking about the future, about her future, was causing my distress. Simply put, when I wasn’t thinking about her future I felt surprisingly ok - playing with my children and living my life, but when I was caught up in thinking about her I was stressed, anxious and miserable.
And I knew that I didn't want to feel that, so I realised I had to do my best to leave my thinking about her and her future alone. And that was the end of this painful beginning.
From Helplessness to Resilience
I realised that it was my seemingly well-intentioned worrisome thinking about my daughter’s future that was the source of the pain I was feeling. That my thinking, in and of itself, was making me upset. That the situation and circumstances of her injury and what her future was going to look like, was going to be what it was going to be - regardless of any anxiety or worry on my part.
So this became a new path. A path that led to more peace of mind, less stress, and more importantly, a bonus feature. I was able to see and handle all the challenges life was throwing at me from a clearer perspective and state of mind. Amidst the terrible pain, I’d found access to resilience and mental health.
This perspective, or understanding of life and how our minds work is the foundation of everything we offer at the Almond Tree Foundation and the key to finding wellbeing. I have spent the last 15-plus years as a practitioner in this approach and along with my co-founder Claire Shutes, we decided, having seen its success elsewhere, that we wanted to help others caring for or living with disability or illness see this too. It's important to mention that this approach is a recognised and researched educational approach to mental wellbeing which you can discover more about at the link at the bottom of this article.
Simplicity in the Face of Complexity
But being able to see life from this perspective isn’t always easy.
To begin with, it’s very common to think that it doesn’t apply to you. When living in painful and life-changing circumstances it feels like your situation is so much bigger and more complex than anything this understanding of life has to offer. That the complexities of our situation are just too big for something so basic. But please don’t be fooled by its simplicity. The power of it IS this simplicity.
The logic is sound. Everything we experience and feel is created in us through the medium or power of thought- our thinking. Life truly is an inside-out experience. As big and as life-changing as the details of our lives become, our feelings are determined by our thinking about our circumstances (or anything else for that matter). And when we become aware that it is our experience of thought in the moment, it offers us the possibility to change from feeling the circumstances, to our thinking about them - thereby moving us from being a passenger to being back in the driving seat.
Now this doesn’t mean the details and circumstances aren’t important, FAR FROM IT. We need to handle these sometimes life-or-death situations with great care and attention. But knowing that our feelings are being created by our thinking about the circumstances, and not the circumstances themselves, enables us to transition from anxiety and distress to mental health and wellbeing.
The Power of Insight
It's also important to see that it can be challenging to experience this being true in the moment. I’ve seen people give up because whilst it makes sense on paper, realising it's true in a low state of mind or a distressed feeling can be hard. The depth of feeling that we experience can be too great, or the situation can appear too big or insurmountable. We just feel out of our depth and sometimes beyond help.
I must stress that NO ONE is beyond help. This isn’t a soundbite either. I’ve personally been present with many people at their lowest moments and seen the difference and change that this offers. It's challenging, in simple terms, because it's not something you can force into being. It requires an insight or realisation to experience its truth. It's not easy to get a fresh perspective when you feel emotional about something and seem stuck. Seeing the role of thought in real time requires a shift in understanding that comes through insight or fresh thinking. One new thought can completely change our experience in an instant. A realisation or seeing that this is the way we function psychologically is a necessary part of the change process. And this can’t be manufactured.
Finding Wellbeing despite difficult circumstances
Going through a life-changing experience challenges and tests us like nothing else. As you’ve read, I’ve experienced this first-hand and seen many others who have been through equally difficult circumstances and found peace of mind despite the situation. Please know that it isn’t the specific examples or details which are helpful or important to learn from, but the generic principle. As a human being, you are created with resiliency built in. It is part of our default settings. Understanding how our mind works and how our feelings are created applies universally everywhere in every part of our lives.
And it is this that offers tremendous hope. Our resilience; our capacity to withstand or to
recover quickly from difficulties, is an innate, inherent part of all of us. It's always present and available, but somehow hidden and so we live in an often physical and sometimes painful fully immersive reality. Being conscious and aware of our thoughts and feelings means that we, not the circumstances, have power or agency. We are no longer subject to the whims of our situation. We suddenly have a choice where previously we were trapped.
Letting Go: Returning to Joy
Think about how young children can have fun and enjoy themselves and then at some point get upset about something. They might cry, scream or have a tantrum, but they completely get over it and return to joy. They don’t continuously worry or think about it. They don’t dwell on the negativity. They let it go and shift back into being happy and living life.
This is how we are set up - your “in the moment” feelings are temporary, not permanent. Look deeper and you’ll see it's always our relationship with our thinking that gets in the way of our peace of mind. It’s our feelings that like clouds, cover up our sunshine. Just know the sun is still there - we’ve just lost sight of it for now.
A 20-Year Revelation
What I didn’t know at my daughter's birth was the universal and fundamental nature of what changed my life. Back then it was limited to this particular situation and set of actions. Later, as I spent more time learning this approach, I saw that all of us have the ability to live in mental health and wellbeing. And the “bonus” feature of better decision-making from a clearer state of mind is only one part of the package living like this has to offer.
There is much more to say, but this is a good place to leave it for now. Our Almond Tree website offers several videos and materials based on this approach, to either carers looking after someone living with a disability or illness, or the person living with the disability or illness themself. I hope you find it helpful and hopeful.
* For more information about this educational approach to mental wellbeing click here.