What does it mean to be an extreme caregiver to your child? Well in my case it has meant gaining 35 pounds, becoming too exhausted and injured to maintain a lifetime regimen of exercising and that I started smoking. Smokers, of course get no sympathy. I grew up in a household where both parents were heavy smokers but I didn’t start until I was 46 years old. That probably means something, but I’m not certain what. Extreme caregiving meant that my expression of creativity, writing, was put on hold for over 15 years, until it exploded from my unconscious with blogging about my son and life with him in 2010 and then publishing poetry in June 2013. After fifteen years of carrying my son and his wheelchair up two flights of chairs, my back was finished and now it’s difficult to even lean over my son and perform the physiotherapy which has helped him to survive.
It has meant that, despite best intentions, planning and tremendous effort, my other two children’s needs were not met. This sounds as though my life has no balance, and it may well be true. But balance in life has a lot to do with your own perception. Balance is, by definition, never static. It is a balancing ‘act’. And as such there have been tremendous swings of the pendulum, more extreme motion than most encounter. Pain and suffering, even death, has a way of doing that. Stoicism is great, if it comes to you naturally but I am an emotional guy, prone to outbursts of joy and sadness, love and frustration. I fight against the swinging of the pendulum, often with success. Sheer will can carry you a long way towards your goals. When the goal is to create a life-environment where happiness coincides with an unflinching look at reality for your children, motivation never seemed lacking.
We go through changes with age, no doubt, often under the influence of our interactions but mostly due to our reactions that stem from who we are. Some don’t need change or are impervious to it. We all like to think that we are constantly learning. Only, the accumulation of information today is so overwhelming that it passes for change. When you are challenged to the extreme by your life-circumstances there exists the possibility that it won’t change you at all. At least not on a conscious level. What I have seen is that change is never what you expect it to be, if you are open to it. Sometimes we actually retreat to a safe place, a known reaction, but that is not an authentic one. I believe it is only when you are surprised by yourself, when you are taken down a road that is unfamiliar to your psyche, that true change is happening.
Someone who was very close to me more than once said, “Where is the Eric that I used to know and fell in love with?” I’m here, I would say. The circumstances of my life have not made me a different person but it has, through its extreme nature, sharpened certain parts of me, uncovered parts through the process of erosion, that even I could not know existed. Life is full of changing experiences, some short, some long. Often we resist change and, as I said, we retreat to reactions that are meant to keep us safe, away from becoming something we don’t really trust, but all that really is, is fear of the unknown.
What we know, is safe, comfortable even. What we don’t know catches us off guard and can send us reeling like a drunk through the streets. When my mother lay dying and I left her for the last time that’s what literally happened to me. I wasn’t capable of walking in a straight line, I was punch-drunk from an overwhelming degree of every emotion possible, happening at the same exact instant. I clung to a wall so as not to fall down, and later wrote:
Clutching the wall,
as all hope leaves me,
not to tumble onto the street,
onto my knees.
Where wet cobblestones frame my anguish,
my deliberate crime of absence,
with just punishment,
that relishes not only love
but rather carelessly,
There is a sense of quasi-hope in that last line. Life is fickle, not fair by any stretch of the imagination. If you have religion you possess a ready-made framework that helps you to deal with the unimaginable. You still struggle, of course, but from my personal view you need to learn what your framework really consists of and see how it isn’t adjusting to these traumatic experiences, to move forward. If I am grateful for hardships it is lies in the fact that it brings you to the boundaries of who you are, you see yourself, no longer through a ‘mirror darkly’. Moments of clarity arise which can be seen as religious epiphanies, without the religious framework, but often with an expression of religious language, because those phrases are beautiful poetry and thus, timeless truths.
When you go beyond your boundaries you, ‘lose it’. And I am no stranger to those experiences. Some get back on track, find the path again and maintain composure. Others wander off into the wilderness, never to be seen again. G. Jurgensen, author of ‘The disappearance’, a haunting book wherein she shares the loss of her two daughters, wrote of me, “His way is more that of an explorer than of pioneer. For reading his poems conveys the feeling that he is driven by the discovery itself…” I’m not happy with such a description. I would rather be a yes-man. The one who follows orders, is told what to do. But my experience in caring for my son taught me that there are areas wherein you must act as an explorer, covering new ground because, quite simply, no one is there to lead you, to tell you how to behave or even how to approach an obstacle. Your child’s life hangs in the balance, but at the same time you are carrying him with you, piggyback, through treacherous terrain. Terrain that you are not a qualified guide for. It comes down to an experience of raw survival. I didn’t know this going in. I thought, with my own meagre medical training, the professionals will know what to do. We’ll figure this out. Things will be OK. So, let’s start! Let’s start looking for solutions. A friend once told me, “Yes, that’s the problem with men, they can’t accept the notion that they can’t solve a problem.” Sure, if you get stuck in that place of frustration, the feeling of helplessness that comes with not moving toward resolution, then you won’t be able to deal with the real issue at hand. But the solution is easy. You do accept that you can’t solve the problem, in the way that you are trying to solve it. But a solution exists, a way to help exists.
When I visited my mother on her deathbed in Holland, my brother was also there. He saw me do what I do best; little adjustments to her position, pressing on areas to alleviate pain, spraying moisture into her parched mouth, supporting her chin so she could breath more deeply and paying attention to oxygen levels. All little things which came naturally. He felt bad about not being able to do anything, just standing there. So I told him that he is being there, with his mother. For a brief moment, until she lapsed into unconsciousness, until her light finally went out, she was able to acknowledge his presence, as she had done with me the night previous. That was enough. The connection had been made and it was enough. We are never doing nothing, it’s just that the fear of not being effective in a situation, such as I experience daily with my son, can be overwhelming. A whirlwind of doubt is raised as we feel incapacitated by our emotions.
For some it comes naturally, for others with experience, that we can find in those moments a degree of focus, slowly shining its light from what I call, a ‘well of intent’. And all of this is possible if we can listen to the voice that our hearts sing continuously in the background. When we let go of fear, by delving deep into ourselves, we can hear that soft singing. The clutter of distractions that infest our minds, the dead-end paths that we let our minds go down knowing, knowing that it leads us nowhere useful, take us from the grace of our own hearts.
None of this lessens the knot I feel in my stomach each and every time my son is suffering; after eighteen years it has not relinquished even a little bit of its bitter sting. I believe there is balance to be found though, in the smiles that can be brought to his face, merely by being present, because he has understood with experience, that the intent is there. That all the effort has created a bond, which always existed, in its entirety, in full force, from the very beginning and which time has allowed to mature, to express, to go out into the dense unknown forest and finally return to its natural home, our hearts.