27/08/2019
10am – 2pm:
“Support worker arrived at 10am and was greeted by the consumer. They introduced themselves and the consumer showed the support worker around.
Consumer was eating breakfast so SW (support worker) sat and chatted. Afterwards the consumer showed the SW what chores he will need help with such as washing as the machine is downstairs and making his bed.
The SW put a load of washing on and made the consumers bed and they packed the wheelchair into the car and headed to the forum. They checked out the pool and chatted with life guards about accessing the pool via the chair lift. Afterwards the consumer wanted to go for a walk at Lambton park. He walked on his crutches followed by SW with wheelchair (consumer used wheelchair for distances over 500 meters) until he got tired. The consumer and SW headed back to the consumers house and arrived around 1:15pm. The SW unloaded wheelchair while the consumer went inside and to the toilet. SW hung washing out and helped the consumer make his lunch. They said goodbyes at 1:45pm.”
The summer scenery of that afternoon was drowned out by the haze behind my eyelids. After P left, I went to bed and slept the rest of the afternoon. The duloxetine and olanzapine the medical team had put me on at Royal Rehab Ryde spun my vision and transposed my thoughts from the inside out. I lay on my bed for an hour building the motivation to ambulate on my crutches to the bathroom to cathetrise. The bedroom felt like it was coated in plastic. A textured buffer floating on the horizon. Rustling in the periphery.
Moving from the hospital to my Mother’s house was like seeing the sun rise in the morning after a long winter. But as the air cooled inside me during the longer nights, the rising sun caused the fog to thicken.
Cold flushes ran up and down my legs like pins and needles that night.
I’ve never experienced anything quite like adjusting to both needing support and being the director of support. It was like being made the managing director of a company I didn’t even know the name of.
Let alone how to run it efficiently. I was not looking to generate profit but rather, the profit for me was a sense of moving forward and at the very least filling the days. It felt as though time moved at a different speed for me as I peered through a repetitive haze of medications and community access. In my case notes I may present as ‘clean on appearance’ while I internally screamed in silence. This experience was a new education on affect. A new relation to autonomy. I felt a detachment between thought and body connection.
I later read in Steph Comella and Theo Fracis’ book on spinal cord injury that this new autonomous body/thought relation is not dichotomous. Paralysis positions the individual as a director of action, in which they might utilise all possible tools available. The individual might exercise their independence by directing their support worker or asking for things to be arranged in a way that works for them. “Please don’t screw the bottle cap on the milk tightly because you know I do not have the same grip strength as you to then open it.” It is the direction that is autonomous. If the orchestra in the day to day sounded and felt disjointed, I better pay attention to how I was conducting it.
This new world was just painfully lonely at times. I didn’t remember who I was, the things I loved, the books I enjoyed, the music I played. The murmurs of an unfamiliar angst oscillated through my body. The trauma and powerlessness of the inpatient months had dampened my curiosity. After seven months of inpatient life this was a surreal adjustment. The timetable from the hospital transferred to the timetable on my bedroom wall. I filled the pill box each Sunday with my medications for the week in their respective timeslots. The pills became patterns of time. The toileting phone alarms for pee times similarly became landmarks. Friday 2:30 psych appointment, 10:20 Tuesday physio, new pain patch went on Thursday, 106 meters on my crutches in 6 minutes.
8/11:
“Arrived at consumers knocked on door and was greeted in. Consumer was just finishing breakfast and chatted. Left home and headed to gym for workout consumer did workout but finished early as said wasn’t feeling well today drove home and walked consumer in asked if SW could help consumer. Consumer was very happy today but just wasn’t feeling themself due to the medication mix up over the last few weeks consumer thanked SW for the day.”
The day this case note above was written I going through withdrawal. I felt awful that day. In order to envision what I imagined my future to be I had to clear my thinking and get a sense of how I saw the future as a continuous process. I wanted to grasp at this fleeting image, even if only for a second. Then I might be able to hold on to something. Preferably a sense direction. I may not have a map but an image, a picture, a feeling, a sound. An ephemeral appearance, unfiltered and true, that might carry me. The anti-psychotic and anti-depressants the clinical staff started me on at royal rehab ryde made this a lot harder. In my opinion these drugs were prescribed so that staff could side step difficult questions. What can I read about spinal cord injury? How has the process of recovery unfolded for people in the past? How will I get access to housing in Sydney? How do I navigate the uncertainty of the future?
Now that staff weren’t administering these medications to me and deeming me as ‘challenging’ if I refused to take them, I decided to take myself off them. Whenever I moved my stomach sank and nausea took over. I felt cold waves of dry rain running through my veins. That day when the case note above was written I asked the support worker to pull over. I opened the door and threw up on the road. I asked to be taken home. Later that week my mother called the Newcastle community mental health team. Two community councillors came to the house. They sat opposite me and ran through a quiz of suicidal ideation. The idea escaped them that there could be a connection between living in a body that isn’t accommodated for by the able-bodied world and the perpetuated trauma of exclusion. The clinicians said they could put me back on alternative anti-psychotic, anti-depressant medications. I felt as though long vacant periods of inaction was the standard clinical approach until there was the need for crisis intervention. Perhaps, similar to me, these clinical teams felt overwhelmed by the unknow, uncertainty, and unpredictable outcomes so they turned their backs until a tangible solution might appear, like medication.
This left me feeling misunderstood, unheard and left behind. The elephant in the room was only visible to me. I was adjusting to living in a new body that doesn’t sleep, poop, pee and move in the same way that it did before. Bessel Van Der kolk touches on the trauma of this experience in his work The Body Keeps The Score.
Van Der Kolk states, “‘Breathing, eating, sleeping, pooping, and peeing are so fundamental that their significance is easily neglected when we’re considering the complexities of mind and behaviour. However, if your sleep is disrupted or your bowels don’t work, or you always feel hungry, or if being touched makes you want to scream (as is often the case with traumatized children and adults), the entire organism is thrown into disequilibrium. It is amazing how many psychological problems involve difficulties with sleep, appetite, touch, digestion, and arousal. Any effective treatment for trauma has to address these basic housekeeping functions of the body.”
I was looking to integrate the trauma of my injury while the clinical approach was to diagnose and mask the trauma enough so that I might became unaware of it. However, at this time I could not pee, I took bowel medication, I took sleep medication, my sensation and arousal were still trying to find their way to my brain, all as a result of spinal cord injury. The psychological medications that didn’t address the symptomatic consequences of my disability ironically caused problems with eating, diet and digestion. But these medications were administered in the hope that there would be no need for crisis intervention, no need for answers to difficult questions, no need for awareness, no need for change. At the time I could not yet articulate this. Instead I felt isolated but I trusted in the inevitability and reliability of change. I embraced my insecurities and started to actively seek them out, introduce myself to them and ask their names. I agreed to take the medication so the mental health team would leave me alone and then continued not to take them. I would have to educate myself on how to manage my new body. 1’st 1:30 Mental health appointment, Friday 13, 2:30, psych appointment, Physio Friday 1pm, Appointment on Friday with coordinator, Thursday GP, hospital appointment, Monday 3rd 3pm clinic at recovery station. Tuesday 14th 9-10:30, Thursday 16th 10:30-12.
29/10:
“The SW arrived at 10am and was greeted by the consumer who was feeling a lot better and disclosed that the mental health team made a visit to his house and decided to put the consumer back on the medication he was trying to cut down.
The consumer had breakfast and they headed into the spinal injury service and the consumer had an appt for an hour. Afterwards they went to new Lambton and enjoyed sushi in the park followed by a short walk.
They arrived back at the consumers at 1pm the SW made the consumers bed took the rubbish out and put a load of washing on.
The consumer asked SW to leave at around 1:15pm.”
It was strange how much I started to value being alone. Maybe it was the feeling that the only certainty on this journey was the temporal appearance of what I perceived within myself. I was reminded of a card game in which the players aim to get rid of all their cards. It is a game of deception, as cards are played face-down and the players have the option to lie about the cards being played. Each time multidisciplinary teams outlined a mission statement or their core values it would turn out that when they said they were holding two Aces in fact they were not holding two deuces. I called bullshit. Silence and the sound of my breath swept over me like the sound of waves lapping up against the sand. White noise and static. Thresholds between sound and silence, space and non-space. Oscillations between such contraries in zones of varying intensity. Zones of void like spaces. Falling asleep with the lullaby of a spinning fan and a dull light. As an able-boddied person I had seeked out ways to change how I felt through distraction, action, interaction and conversation. Now I would sit eagerly listening to the inner voice and phenomena of kinetic materiality. These sounds often spoke like the echoing paranoia of Samuel Beckett’s ‘NOT I’,
‘More likely the machine … so disconnected … never got the message … or powerless to respond … like numbed … couldn’t make the sound … not any sound … no sound of any kind … no screaming for help for example [… ] scream … [screams] … then listen … [silence.] … scream again … [screams again.] … then listen again … [silence.] … no … spared that … all silent as the grave … no part … what? … the buzzing? .. yes … all silent but for the buzzing’.
Turn down the noise and listen… What do you hear? What mantras do you have playing in your head? Are these mantras inherited or are they yours? This evening I will sit with and feel this sadness and understand that these feelings dissipate as quickly as they appear. I feel left out, I feel alone, I feel excluded from society, the outside environment feels insular. I embrace these feelings and allow myself to feel them wholeheartedly. Without the medication, prescribed goals and aspirations, the thoughts of others as to how life should look, I float above the clouds and the sky is clear. The silence is deafening.
The fragmentation and kinetic pull of this trauma is extended in thoughts and sensations that hide within me. I am not consuming a service without a sense of direction. I am the director of this service. I am the prescriber of my responses. I am not a docile and palatable ‘disabled person’ working toward the goals which others see fit.
I started to make “shift plans”, timetables, arrange appointments, identify the shortcomings.
If my daily needs were those of a consumer, purchasing goods and services for personal use, I must ensure the quality of this product. This capitalistic language reeked of irony, as I, a member of the 64% of unemployed people with a disability in Australia strained to find my voice.
21/09/2020:
“SW arrived at consumers house and went inside.
The consumer was dressed well, clean on appearance and seemed to be in a good mood.”
