Wednesday, 30 September 2015
Yesterday I spoke to a close friend about my scars, the emotional kind. I don't really do that very often because not many people have the strength to hold that kind of emotional depth. It is painful for me to speak of and I can sense the intensity of emotion in the person I am telling it to. I am grateful that this person can hold the weight of my pain, even if just for a few moments. The fact that someone hears me and doesn't try to 'fix' things is all that I needed. He didn't tell me that everything will be alright, because like me he knows that our emotional and physical suffering never really goes away. We can't escape it, we just have to find ways to live with it.
Of course in the process of our conversation I realised that I had been trying to 'fix' it. My way to fix things was quite typical of anyone feeling hurt. I was pleasure seeking and looking for distractions, my answer was to put myself in the 'doing' role. I have to be doing, rather than being, which is quite laughable as I have spent many years teaching meditation, telling people to find more time to 'be' rather than 'doing'.
The problem of course is that when you have post-traumatic stress disorder, or have been through any personal trauma for that matter, the process of just 'being' is pretty over whelming. You are never really sure what will pop out of the box. But as a Carer I realise that I can't keep 'doing' for forever, I am already exhausted from my daily caring routine, and sooner or later I will collapse if I don't give myself permission to just 'be'. The day after my twins were born I was faced with the prospect of being a parent to one disabled child, it was only a few months and a few surgeries and life threatening infections later that I was dealt the blow of two chidren with disabilities. I was thrown in to the role of new mum, trying to be the best parent I could in exceptional circumstances, and that role of mum soon became nurse and once home the new label of Carer.
There was no time to say goodbye to my oldself, and I won't lie I grieve for the person I once was every day and for the person I thought I was going to be. My faith as a Buddhist tells me that everything is impermanent, change is okay, it normal, but tell that to me 'ego' self who had all these great plans, hopes and dreams. I find my faith and my practice of Nembutsu, 'calling out to Amida Buddha' a great comfort. When I feel helpless I call out 'Namo Amida Butsu' and that process helps me to release something of my grasping self, the part of me that holds on to those mental and physical scars as if they were a punishment. I am starting to begin to change my relationship with those scars, it is a slow process, but if I focus more on the present moment and less on the scars of the past then there is an oppportunity for those scars to start healing.
My daughter taught me that lesson today while I was applying cream to the scars on her torso. As I swept my fingers across the skin I felt the jagged edges of where a scalpel once carved through her tiny body in order to save her life. I find it an uncomfortable reminder of what we once lived through. I had hoped as she grew that some how the scars would fade or become smaller but alas they have not. Today she looked down at her scars as I applied the cream and I explained to her how she got them. 'You were very poorly when you were a baby and a doctor had to cut open your tummy and take out the piece that was poorly. You were sick for a very long time'. She looked at me with those big brown eyes and her beautiful smile and said 'I am a big girl now Mummy'.
In that moment she was present with now, the scars didn't matter, she is here, she is happy, and she is alive. The past does not matter to her; at least not yet, as she is still only five, but for now the scars can be allowed to fade, their rough edges can become a little rounder and softer.
I think if she can look past her own scars, then it is about time I did the same with my own.
Friday, 11 September 2015
As a Carer there are times when you feel like there is no ground beneath your feet. This should not be surprising because after all, in our role as a Carer we realise impermanence is everywhere, the health of the person we care for can change by the hour or the minute. One routine that worked a month ago, might change the next, due to circumstances or failing health. While the person we care for relies upon routine, with the inevitable change, comes increased stress on you as the Carer and increased upset for the person you are caring for. This week has been the first week back at school for my twins, while the classroom has stayed the same, that's about it. A different teacher, new coat pegs, different tables at lunch time, a new bus and bus drivers to get use to. For a child with brain damage who struggles to map in his mind his surroundings, this new experience is torture.
None of us like change, but for most of us we find a way to cope. But for children and adults with learning difficulties and for those with physical disabilities, routine is a way of feeling grounded and secure. When something disrupts our routine we inevitably see it as an obstacle, we can feel a physical change in our bodies, and mental confusion can arise. But what if we didn't see it that way? As a Carer the world feels permanently full of obstacles and sometimes they are too big to climb over or I don't have the strength to move them out of the way.
It is at times like these I often reflect on my reaction to these obstacles. As a Buddhist I have been trying to learn from my experiences and draw on the teachings of the Buddha to help me face these difficult times. With my children and their differing needs I feel that I am constantly faced with new challenges. Most of you will know that sinking feeling when you try and get help, and following an assessment the door is shut in your face once more. I am aware that this festers in me, I feel so angry that there are so many obstacles, so many struggles to get my children the help they need. At the back of my mind I know that I will not be here forever, and when I am gone who will carry the sword and go on fighting for them.
Recently I have been reading about the story of the Buddha's enlightenment. On that night when he sat under the tree and was faced with many challenges and distractions, Mara tried to tempt the Buddha with obstacles that could distract him from the path to enlightenment. The Buddha showed great strength and turned the arrows of his enemies in to flowers. He showed that the obstacles we face are not our enemies, but rather our friends. Yes I did say friends! I know that is hard to take in, but we learn the most from the knives that cut us the deepest. If we see the obstacles as our enemies, then we also see the world around them in this negative light and we become stuck. I for one do not want to spend the rest of my life stuck!
So I am taking on board this lesson from the Dharma teachings.
So when Social Services, the NHS, or which ever service it may be, shut the door again, I won't let myself dig a big hole of anger and bitterness. It is about how I choose to perceive things, and I am tired of feeling worn down, if I don't make friends with the situation then I am at War with myself.
I have felt like I have been in battle for a long time, and my children are only five, this cannot continue, I will get Carer burn out! It is time for a change.
The only enemy we really have is the one within ourselves that says they don't like things as they are now. That longing for a life that is more peaceful, secure, happy, a life that feels like an impossible dream. But the reality is that even if your child or partner wasn't disabled, if you weren't a Carer, life would still have challenges, just different ones. Obstacles are there to teach us something, rather than getting angry and wasting energy trying to climb over them, it is better to stand back and find a way to transform them. We can blow down the wall of defeat, with compassion for ourselves and others.
Rather than getting caught up with a wave of negative emotions we have the choice to sit with the feeling, and let it pass rather than giving it the energy to become a self inflicted wound of anger and blame. At those times when we feel the worst of our negative emotions; rather than supporting the theory that we are in some way to blame for our situation, we instead need to give ourselves some loving kindness. When some things are out of our control we have to learn to accept the changing nature of life and by transforming our obstacles in to flowers we can make our world just a little bit more bearable.