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Life as a parent carer. For most people, you find a reasonable fare, arrange accommodation and head to the airport. This week, however, I’ve spent several hours and exchanged emails just trying to get my 21-year-old daughter's wheelchair onto the aeroplane. It’s hard to believe how complex it is. You must know the battery and wheelchair types and the dimensions, as every airline has very specific rules regarding how they handle both. Special authorisation from the airline’s relevant department is, of course, required to travel.
Additionally, I’ve also spent several more hours helping perform her physiotherapy, as well as tackling some legal, insurance and safety issues on her behalf. Then there is the regular care - preparing and feeding her some meals, cleaning her glasses, lifting and setting her up in bed. This is on top of the regular day-to-day life issues with my other four children, our home, and a job. My wife has had her own equally challenging responsibilities to deal with. This week, she’s been just as busy, managing her caring role while also battling a bad cold. She handles more of the day-to-day physical care tasks, such as dressing, personal hygiene, feeding, drinking, and so on. None of this includes the support and care we provide for my son who has his own complex needs and the support that we provide.
A Busy Life
Please don’t misunderstand me. This isn’t a complaint; I’m not frustrated, upset, or annoyed, nor am I looking for sympathy. I’m detailing all of this because I think it's pretty typical of life as someone with a caring role (although these details are unique to me). There are literally hours and hours spent every week dealing with issues on behalf of the person you care for - on top of everything else in your life.
I am sure this resonates with many people juggling similar responsibilities. I am also sure that the same is true for anyone living with a disability, serious illness or injury. Many issues need to be dealt with purely due to the condition or disability that an able-bodied person doesn’t need to consider or simply may not be aware of.
Each year, there is an enormous amount of legal, care, treatment, therapy, equipment, and general administration that needs attention. In the process, it can be a real challenge to keep a healthy perspective and our wellbeing positively oriented. I see from our work at the Almond Tree Foundation how difficult this can be. Stress and overwhelm are incredibly common; additionally, anxiety and worry that everything is being done “correctly” or that the best solutions and remedies are being provided are equally common. Often, people feel wholly responsible for finding THE medical solution to make themselves or their loved one better.
It becomes more problematic when solutions aren’t easily found or when there is simply too much to do or take on. The concept of personal responsibility can also lead to feeling out of control, taking it personally, or feeling as though you have failed completely.
So how is it possible to deal with these challenges and keep our balance? To keep a healthy perspective while still accomplishing what’s necessary. For the record, I am not a leading expert. Like every human being, I lose perspective and lose track of what is important. However, I do feel I have plenty to share on this topic.
Maintaining Perspective
At the heart of what I know is the role our thinking plays. Thought, as a concept or entity rather than its content, is the creator of every feeling and emotion we have. It shapes how we experience all the challenges we face and offers us every resource to navigate them. Understanding the power of thought and how it is the creative power behind the human experience is fundamental to navigating the landscape of our mental wellbeing.
In brief, thought is arbitrary, offering us a unique in-the-moment snapshot of what we are facing. It is also continuously changing, like the waves of the sea, never stopping, constantly rolling in, with each new thought replacing the one before it.
Once we can see that every human emotion is brought to life through that power, our perspective on those feelings can begin to change. We can know that our current thinking, however painful, stressful, or uncomfortable it feels, may not be the best way to handle the current situation. At the same time, knowing that a better thought or perspective isn't far away, riding the next wave.
Now this might sound simplistic, but I also know that understanding that I don’t have any control over the details of the circumstances I am facing, more often than not keeps me managing life with a balanced perspective. It is very easy to take everything that is happening to us personally. To interpret a situation as a failure or to see someone else's actions or words as a criticism or judgement.
Embracing the Journey
My orientation is neutrality: seeing that every situation and every set of circumstances is objective or impersonal. It is a paradox of sorts, to know that it is not personal to me, but also that I am feeling my personal experience of it. I know my thinking can sometimes lead me to blow situations with the airline/doctor/lawyer/fill in the blank out of proportion. But I also recognise that my ‘in the moment’ thinking isn’t always helpful, or perfectly accurate, and it's only one side of the story, so I make sure to keep a healthy balance.
In addition to this, I also know that humanity is good and often more intelligent than I give it credit for. With this understanding, I recognise that people are always doing the best they can in each moment. An example of this is my daughter's birth, where, despite the hospital later admitting negligence to their duty of care that caused her cerebral palsy, I saw the nurses who were responsible for that care genuinely doing their absolute best.
That night, of course, sticks in my mind, I recall vividly the nurse apologising afterwards. My initial, extremely personal thinking was that she was apologising because she knew she made a mistake, and she caused this.
But with more perspective and from an impartial point of view I see that this was an accident. She was doing her best in the moment, making the best decisions she could given the thinking she was experiencing. From this perspective, I also do not feel upset or cheated. I do not feel my daughter should have had a different life. The circumstances and events of our lives are neutral, and my expectations of what could have been were effectively thought in an imaginary form. As John Lennon said, “Life is what happens when you’re busy making other plans.” Our visions for the future get in the way of our experiencing life as it is.
So we have learned to try and embrace life WITH all its unpredictability. One aspect of that is that our daughter is treated the same as our other four children. Her medical challenges do not define her or her identity - she is more than that. Of course, there are obvious implications to her disability that need attention (as I mentioned above!) but they are just one part of who she is and they don’t overshadow her or her place in our family or community.
Balance and Resilience in the Chaos
Going beyond this is our ability to make life and its circumstances an enjoyable challenge, or as I frequently call it, a game. The more I don’t take my personal thinking about my circumstances seriously, the more I enjoy life. I’ve found myself taking pleasure in the endeavour or the experience itself rather than the result or outcome. I’ve found over time that even extremely detailed or “difficult” situations can be approached with a sense of excitement, adventure and mental strength that simply isn't present when I’m narrow-mindedly approaching something with a result in mind.
In the end, life’s challenges are inevitable, but our resilience and how we navigate the circumstances we face are entirely in our hands. By understanding the power of thought and staying grounded, we can find the ability to enjoy every aspect of our lives - no matter who we are or what we’re faced with.
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