Memoirs of Pain and Isolation

"Violets"
Art as Therapy - Nova Morgan 

Earlier this year I ruptured the meniscus in my left knee with the added fun of a detached tear flap. This latest adventure with pain has, for me, dragged into the fore all those other occasions I have played the pain game.

Without even trying to get my early timeline in order, little snapshots of pain spin in a carousel filled with vignettes, images of me and pain, faded, yet with crisp jagged edges framing it all.

There were the urology tests made up of urgent instructions, holding a bladder, filled beyond capacity with a burning liquid, through a tiny tube inserted in the most horrifically intimate way, especially for a little girl. Then the slow agonising release of the fiery radioactive dye that no one bothers to warn you about, as if ignorance is a band aid best applied without warning. I know this occurred before I was seven, but more accurately than that I cannot say. I had mostly blocked these memories, but they came to haunt when a child of mine, 25 odd years later, had a similar procedure due to an antibiotic resistant infection. Holding a tiny child while a nightmare plays on around you and your child screams in a crescendo that hardly covers the echoes inside the vaults of your own mind as tears for him mingle with the tears for your child self and compassion wars with a panic you can't let out.

These tests lead up to a prescription for a long term antibiotic and I acutely remember it was 2 large mauve pills 4 times a day, it was a lot of medication. The first sign that something was not right was headaches, headaches that became seizures, at school, at home, in the hospital. I think only someone who has had migraine could understand the skull splitting, brain gouging pain, that resulted. Trips to specialists quickly had me admitted to Royal North Shore Hospital diagnosed with intracranial hypertension. The fluid around my brain was squeezing me into fits.

All up I was in hospital 45 days. There were lumbar punctures, seizures, oxygen tents, children dying around me, lots of crying and screaming, a consuming loneliness, pain, drugs and a profound sense of abandonment and loss of autonomy. If anything came of this, for me, it is to never try and hide truths from children as nothing is more nightmare filled than long days, and even longer nights, of unanswered questions and critical  fear. If you think the truth is scary ... imagine knowing nothing and having everything to fear. There was also burr holes, 3 of them, drilled into my skull. The size of 50 cent pieces, approx 31mm, I think to assess any physical cause for the fluid to build up. I was left with large, skull free soft spots and 14 stitches, and at that time, no answers.

After the long term antibiotic, Nalidixic Acid, was diagnosed as my problem, by way of an allergic reaction, I was released back into my life. My hair shaved, my good eye patched so as to force my now turned eye, from the intracranial hypertension, back into a working position, and my head full of all the horrors and fear of what had just happened and been done to me, I felt isolated, fearful and out of place. Strange rumours had circulated about what had happened to me and I had no skills to reach out and reconnect. I don't think I ever felt a part of anything after that, always the odd fit, the outsider, the fringe dweller. Even though I was out of the hospital the isolation stayed with me and it was here that an undercurrent of sadness and loneliness became a part of me. I learned to make friends again, but it wasn't the same, I wasn't the same.

It is here, in this memory, that I get a lot of my understanding of, and for, my son with Autism Spectrum Disorder. His limited ability in social situations, his struggles with connections, and his isolation, especially in his early school years, all made me revisit my own history with very similar themes. The correlations were quite marked and I grieved that a child of mine had to experience it. His was not through extreme medical misadventure, but an in born difference from within his own brain, his DNA, his own uniqueness. I had come to view my oddities as an acquired brain injury, not one that disables, but one that pervades and shadows many aspects of self in tiny barely perceptible ways. I had become this broken, faulty creature, but he was perfect, just a little different. I fight for him because he deserves to be anything he wants to be. I find it hard to fight for me because being damaged left me with a belief I am not worth the trouble.

With the wisdom that comes from retrospect I can see how my perception of being damaged has lead me down a path where, being broken, I was not entitled to consideration, that I was ripe to be abused. My need to connect created a pathway to all sorts of abuse situations and a legacy of poor self image, self harm, and mental illness. This isolated wisdom does not make recovery any easier.

I spoke about my anxiety creating distracting visual input here, but emotional input and distress create a painful auditory input. The voices of derision, abuse, disdain, judgement and condescension, all from various hurtful events in my life, all scream and boom within my head. Their noise echoes and choruses with repetitions of hate all directed at me, from within me. A chaos of painful noise, pain similar to the intracranial hypertension, squeezing me out and leaving nothing, but pain, behind. Deep within the noise of other voices is also me, the me that agreed with the ugly directed at me, the me that knows I deserve no less than the ugliness directed at me over the years.

There is another me ... the me that somehow knows all the noise is wrong, but she is weak and ineffectual in the face of all that has gone before. I try to resist the tsunami of negative, but a blade of grass is no match for the storm forces that batter, bend and break.

There are other pain adventures, but this insight into pain experienced in more formative years will do, for now.

Art as Therapy - Nova Morgan