Is Normal what we really need?

(written 1999

There was my baby daughter, stuck in a well body with a ravaged brain. A baby brain – a relatively undifferentiated brain, one that had the potential to heal itself in ways that adult ones cannot. A quickly developing neurological system.

  • Why was no one else interested in attempting to change the outcome?
  • Why was no one seeing what was so obvious to me?

If some of the dormant cells could be encouraged to take over, and run the show instead of their dead and hence useless neighbours, she could continue on as I had planned – a perfect human being.

From the medical model, I was obviously not ‘with the programme’.

Fancy thinking that there was a solution to every dilemma!

Hence, I found myself having counselling with a psychiatrist, who gave me the ‘good’ news that I was not clinically depressed, that I could do with weekly chats to relieve myself of the inadequacies he thought were evident in my telling of the story of my growing up.

I wondered if he was mad.

My daughter had been through a medical crisis. She was left as human garbage. She could not get past “Go”. She was unlikely to live, much less live in a world that would accept her, and here he was waffling on about her mother’s world long gone in a different time.

Not this ‘now’ – I had a real catastrophe unfolding before me. Non development – the apparent fullfilment of the prognosis as laid out by the medical specialists.

The seeming inevitability of the prognosis becoming a reality. I set about searching for another framework that allowed some likelihood of rehabilitation for her vastly damaged brain, hence rescuing her, and thus my futures.

I found programmes and instigated vast changes in our lives to accommodate the extreme busyness that was part of it all. Life continued.

All the while, the dream, some would say, the obsession, was to create the one I thought that I was ‘supposed’ to have had. Nothing spared.

I also realised that if I found myself in a similar situation, I would be appreciative of someone intervening on my behalf. I also knew that if anything happened to either of my sons, I would have rallied in the face of medical inertia.

Hence, sidelined for eight years, that is what I did – went where no-one else seemed either interested, or willing to venture – into the realms of very different.

Along the way, Skye tried so hard to die.

Why didn’t I “let” her die?

There was no guarantee that each was not just going to leave her with less than what she already had to work with.

Death was the easy option – but, it didn’t seem to be hers. Just trauma, terror and more psychic pain. One after the other horrendous illness. Her immune system was so compromised that she caught viruses that I did not know existed.

She screamed through sleep cycles. Refused to sleep. Living was a horror for her.

By the time she was a year old, I realised that she was remarkably autistic. Autistic baby – not what I would wish on anyone. A dreadful handicap, without her accompanying massive brain injury.

  • Hence NO bonding.
  • No positive feedback.

Why did I keep going?

Because I knew that her hell was worse than mine. I knew of options, she didn’t. I had choices. She didn’t. I could walk off, and she was stuck where she was. No prospect of a life past that which I would not ever wish for myself. I wouldn’t want to be left there, hence I didn’t abandon her to it.

My then husband wondered if she actually wanted us to leave her in the state she found herself. I argued that if this was the case, she would have chosen any other mother. Not the one she had, as I was an independent thinker.

I was unlikely to accept defeat. I had the philosophy that ‘problems’ are there to allow us to grow past where we were at their inception. Hence, grow we, or at least, I would.

“The Problem”

As an acupuncturist, I knew that the reason a person thinks they are walking in for assistance is rarely the core issue. The physical aches tend to give us valid cause to ask for help.

Thus, in acupuncture jargon, the constitutional Kidney Jing, Liver Yin, and Spleen Yang deficiencies, poor Blood and energy (Qi) production and circulation, and “phlegm misting the consciousness”, are all screens that we as therapists can play with, rather than seeing beyond, to what set them in motion. A different level of labeling.

Similar to the orthodox medical system of logic, acupuncture and other healing modalities can label and go to war with all manner of physical manifestations, rather than acknowledge, understand, and encourage normal to return.

Understanding HOW the system is manifesting its disorder, seeing the symptoms, attempting to alleviate just these, even focusing solely on the underlying acupuncture energy imbalances, and trying to remedy these, is to miss the point.

Why not go further back into causation, and ask why is the system not healing itself, correcting its own imbalance? What is stopping it from its automatic self-healing? From here, possibly asking – Why did it go off in this direction in the first place?

Does it have a reason, an agenda, to be uncovered, before change/healing can occur?

One that possibly once is acknowledged, removed, transmuted, or otherwise dealt with, the apparent front for “the problem” can dissipate.

Hence the possible reason why some things never seem to get better – we are looking at the result, and trying to rid the body of its reaction, rather than the origin of its imbalance.

In fact, seeing ‘the problem’ as needing fixing, rather than it being the beacon to alert us to follow back along the path we could be lead down, stops us from finding the ACTUAL imbalance.

“The Problem” is really “The Answer” to something else.

Maybe whilst we are so busy trying to correct ‘The Problem’ we also begin to understand how our goal posts can change and we can achieve whatever it was that our script is possibly leading us to find.

Maybe this is when people say they were desperate enough to . . . . go outside their belief system. Past where they are comfortable – as ‘The Problem’ surely has them stumped.

Our Personal Journey

So – why did the soul who chose to be here in my life, as Skye manifest the experience?

Was it to teach me to go beyond what had been my previous limits?

Was it to teach me that I, as an ego driven personality was not in charge?

Was it to allow me to finally break through a vast array of issues that had held me stagnant in my life?

Was it to allow the changes wrought in me to totally alter how I was as a person, a mother, a teacher and a therapist?

It did all of these.

Was it just her story?

It touched the lives of her older brothers. They had a major role in her growth. Sean, more as a co-worker, part of the therapy team, a stand-in adult. Josh as a brother. The sort who trips you up, hassles you and generally is more real, than those who see you as ‘damaged’.

She was his little sister. The only baby he knew. It was often Josh who just knew what it was she was saying, or wanting. Both sons had very enriched lives as a consequence of sharing their childhood’s with her.

Both sons were invaluable for their mother, to keep a sense of perspective.

Through all of the intense life and near death dramas we experienced, I learnt to step back.
To be guided not by wanting to rescue, but by acknowledging another’s process.
To recognise beyond the apparent, to respect the life force, the currents flowing through the tapestry of what we believe to be our lives, reality more than this ‘here’ and ‘now’.

To complete the picture, to acknowledge the energy giving the structure resonance. As in the case of the dying baby – when a change was effected in one area, a whole shift in the fabric of all levels of existence. Consequential to the release of a blockage, all could move on. Battle ended by appropriate action. In Skye’s case, the constant battle to Not Be. (here), needing to be addressed, more than the ways she creatively manifested to exist.

My Learnings

I came to allow and accept the incredible shifts that needed to happen in order for me to go on to the next step. I learnt that everything we do as therapists is band-aiding. Regardless of the apparent causes on this plane, the real reason, acceptance and the understanding, seem to have to come through our time experiencing the fires of life.

The degree of suffering is evidenced by the amount of resistance we put up in not discarding that which no longer serves us. To be able to cast aside the past, and those conditions and beliefs that hold that past to us, allows us to devise a different set of ‘rules’ in the game of life, to match the present we are in, if we can only be there.

I learnt that this play, the game we see as life can be vastly altered backstage. In me changing who and what I was, my daughter was granted the space to reassess. Just as the dying baby’s script was altered when her parents had the courage to confront their worst fears. Just as the young man who had, until I offered an alternative, thought of himself as ALWAYS AND FOREVER a paraplegic.

Skye showed me how to transcend my own handicaps (what I held dear as my belief systems).

Her labels (blindness, deafness, cerebral palsy, brain injury, profound intellectual impairment, epilepsy, autism) were matched by my own – pride, ego, independence, lack of faith in universal providence, and a general ignorance in thinking that I was in charge.

As I worked through mine, hers moved on.

As I changed and healed, so did she.

Was this a ‘placebo’ effect in some way?
Was it that when I saw her differently, that gave her permission to give it a go?
At times, it seemed so.

Or was it that as she changed, I could?
Ultimately who cares?
If the desired result is achieved because someone believed it to be so, and it was, is this not then healing?
That it is not effected in the orthodox manner is hardly a worry for the recipient.

However, to the observer, ‘unsafe’ may be triggered if the world is not always following ‘the rules’.
After all, this is all ‘anecdotal’. Where are the double blind trials?

Maybe all a case of misdiagnosis – not really THAT brain injured.
Not really cortically blind, and now seeing well enough to pick little bits off the floor.
Not really THAT damaged, as how could she possibly have THAT much function?

Skye’s Journey

At some point into the ‘rescue’ mission, I realised that my original timespan of three years was not going to be met. Not ‘normal’ in three years.

The dawning of the realisation that possibly never ‘normal’. The final acceptance of her perfection, as my perfect daughter. Not like anyone else’s, as I was not anyone else. I was living a different life, not always necessarily pleasant or calm for my personality and earthly desires.

Skye often went on what I called her ‘integrative holidays from life”. Meaning – she is taking time out to decide whether to keep on going, or to opt out. Usually she did this in a dramatic way. Stopping eating altogether. Radically ill. On a drip in hospital. Coasting in neutral gear, hibernation mode – very difficult to observe, as her mother holding a desired outcome of well and “normal”.

After each of these, she changed. Physically, as a naturopath I watched her change diagnostically. Her irises gradually went from black, through very, very dark brown, to where I could finally see the immense number of nerve rings.

The naturopathic concepts of going back through ‘disease’ seemed to be so if we looked at the progression in her eyes. She gradually became less autistic. Very slowly.

One Mother’s Story

I started giving her on powdered Chinese herbs in adult quantities., three times daily, mixed with ripe banana for palatability. She had to have this to eat.

Thankfully she was obsessed with eating. The previous dance of attempting to align normal body functions became less intense as they worked their magic.

There became a very gradual “un-misting of her consciousness”.

Slowly a spark of possibly someone present looking out through her eyes.

The dawning of more than blankness in her expression. An awakening. An occasional reprieve from the chaos and the horror of the unusual that had re-framed our new parameters of ‘normal’, in living with her.

I learnt to watch her suffering, her misery, her frustration, her anger, her terror, her withdrawal, and her incredibly tentative glimpses of reaching out, of opening her barriers, her attempts enough to try again – at her speed. It was her journey. Her path.

I had no idea what it was that she had to shift through, before she could get to where everyone else took as a right, as a part of being human. I did find that I could guide, I could support, but that I could not force the process. Where I wanted her to go, what I wanted her to be was not necessarily where she WAS to be.

I could then draw a parallel in my old life (at that point there I was early thirties) as a teacher and practitioner of acupuncture. As I had learnt through my life to date, the easiest path is often the one that looked the hardest. That which I resisted the most usually ended up being the answer to many apparent problems. That by stopping and seeing that which I would expend the greatest amount of energy avoiding, was often the short cut. If I just had the wit to see.

So now professionally when people walk in my door wanting me to rid them of some pesky problem, to ‘fix’ something that feels uncomfortable, I often wonder if they really know just what it is that they may also move, if they allow themselves the space, like I learnt to with my daughter.

To see that more is often achieved by allowing the dis-ease, the discomfort and the pain attached to a belief system, to remain – to change the focus and instead – to let go of the belief system. To work on the ‘self’ that allows the ‘problem’ to be there, rather than be forever distracted by the results of self eating, drinking, being who self thinks self is.

Stray Thoughts

What is so dreadful about having a massively brain injured daughter?

Seeing her as such, rather than as the whole spirit, who has come here to grow, to teach through example, and through the richness of experience that would have otherwise passed me by.

What is so terrible about being in the spot you currently wish you weren’t in?

Seeing it as awful, dreadful, and languishing in the experience, rather than looking at it from a different angle, and cleaning out all those corners that you have hidden from yourself.

Even if they are not the ‘right’ ones to sort out the current situation, they won’t be there to be triggered into action another day, by another incident.

Gathering together people with like belief systems to shore up your position is not likely to do more than make you feel more vindicated in where you stand, and less able to move out of where it is that you are stuck in.

Having Skye in my life touched all those who experienced us. Hopefully if for no other reason, than a guilty gratitude that it was me walking this path, and not them. Little did anyone know, that it was me that felt so very grateful, that I had been given the opportunity to see past ‘normal’, and out beyond.