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Chapter 13 – The Next Chapter

By October 6, 2020Disability
by Lauren Hislop

Click a chapter link (right) to follow this story from the beginning.

With a renewed sense of optimism, I walked to Lou’s office to discuss my new role at Response. I was unable to curb my enthusiasm, as Lou outlined my position, explaining that she wanted me to produce a weekly blog regarding employment and disability. Lou asked me to include my personal experiences of seeking employment as a person with a disability. Fueled with passion, I was eager to seize this opportunity before me.
      Bursting with excitement, I boarded the train to have my regular visit with my mother on the Central Coast. I desperately yearned to share my good news with mum, as I knew she understood how significant work was to me.
      However, my jubilation was short lived. I arrived at her house, sitting at her kitchen table, comforted by the sweet aroma of eucalyptus, mum told me her doctors had found a growth and they suspected she had cancer. The news of my work situation seemed to pale in significance.
      Coincidently it was during one of my visits when my mum found out about her results. As she returned from the doctors, I ran out to the driveway to meet her.
      “Well, I have cancer”. She blurted. Her announcement was eerie. She stated it so matter of fact, in the same manner she would say “I’m hanging out the washing”. I embraced her, pools of tears escaped my eyes. Immediately she pulled away from me. “No!”. She adamantly exclaimed, reprimanding me, “I need you to be brave”.
      From this moment, throughout her cancer journey, I barely showed negative emotions in mum’s presence. I gazed up at the sky, finding irony that there were dark, ominous clouds concealing the sun. The clouds reflected the storm that was about to strike my family.
      My mother had to endure a few months of treatment. During this time my brother Dean, who lived and worked in Sydney, choose to care for mum. So he lived at her house for the duration of mum’s treatment.
      As my thoughts ruminated, for the first time in my life I cursed my disability, as I knew I didn’t have the physical capacity to care for my mother. As her daughter, I believed it was my duty to adopt a carer’s role, a role I was unable to assume.
      During this time I immersed myself in work, it was a saving grace diverting my attention from my mother. Throughout my emotional turmoil, I was fiercely determined to reignite my resilient nature that my mother had instilled in me.
      Under Lou’s imperative guidance, I managed to produce weekly blog posts. As I was a researcher, I was accustomed to writing in an academic style. However now I was a blogger. No longer was I conveying facts, I was also writing from my heart.
      As the emergence of spring returned, so did my mother’s health. She ended her treatment and received the “It’s ok” from the doctor. We were all overjoyed.
      During the Christmas period, I was given a few weeks off from work. Upon returning, Lou informed me she was leaving Response soon and that she was uncertain that my blog would continue. At this point in time, I was physically and emotionally spent and in April just before Lou’s departure, I resigned from my position.
      A week after, mum and I went to Norfolk Island for a week to celebrate the restoration of her health. This was a sacred time that I spent with mum. As the ocean breeze gently touched our faces, we indulged in the carefree living of the occupants. Watching the sun fade over the ocean, I was blissfully unaware of the horrific event about to unfold in my life.
      After the dawn of the New Year, my bowels ceased functioning. This resulted in me being diagnosed with a partial bowel obstruction and hospitalized for ten days, which proved to be one of the most disempowering experiences I had.
      Hospitals are ironically not the most hospitable environments, especially if one has a disability. I always prided myself for being an autonomous woman. However, in this environment, my independence was stripped.
      Most nurses were beacons of humanity. However there were some nurses who were quite hostile and, sadly, I was dependent on their mercy.
      Anticipating that some nurses wouldn’t really understand the nature of my disability, I had papers explaining my disability was purely physical, I was intelligent. I wrote that if they couldn’t comprehend my speech, I could type my message on my iPad. Unfortunately some nurses refused to read my sheet.
      My partner Dudley, my mum or my workers would be with me during the day. However when night fell, I was left to confront some nurses antagonistic attitudes on my own.
      One evening, I felt extremely nauseas and I needed to go to the bathroom. As I was incredibly weak, I called the nurse to assist me in walking there. Once she returned me to my bed, I sat up due to feeling ill. Immediately her eyes flamed with rage, aggressively ordering me to lay down. Terrified, I tried to explain that I felt that I could be ill and that I was unable to lay down. Clearly she didn’t grasp my message. Unsteadily I handed her the paper with my explanation. While desperately trying to type my message on the iPad, she flung the paper back at me, storming off. I called my partner in between my sobs and heard him say he would come in. When he arrived, we both talked to my regular night nurse. While she was understanding, I was compelled to apologise, wondering whether other captives apologise for their abusers actions.
      Thankfully my specialist figured out how to compel my bowel to function normally again and I was discharged. Once home, although my body had recuperated, my mind remained tortured from my experiences. Any slightest indication that something may be wrong, petrified, I would assume I was on the verge of having a bowel obstruction. However, in reality my physical health was fine. Due to my mental state, I was diagnosed as having post-traumatic stress.
      My recent health crisis compelled me to reconfigure my priorities. For the majority of my life, I placed prominence on employment. However now, I wanted my health to be placed at the forefront. I started engaging in activities that nourished both my mind, body and soul. As I began to nurture my body, a renewed sense of wellbeing washed over me.
      Last year I was approached by Hunter Writer’s Centre to write my memoirs through blogs. Upon agreeing to this, I couldn’t fathom that it would give me a renewed sense of confidence in my abilities. Reflecting on my triumphs and trials reignited my tenacious, creative and resilient spirit.
      Towards the end of the year my friend Linda told me of an employment opportunity involving converting documents into Easy English for people with low literacy.
      Linda explained I would need to do a two day course in learning how to convert documents into easy English. After I completed the course, Linda offered me work in converting NDIS terms into easy English. As I never converted documents into Easy English before, I was quite nervous trepidatious. However Linda was extremely pleased with my work and is contracting me to do more in the coming weeks.
      Also due to my traumatic experiences in the health system, I plan to become a health advocate for people with disabilities. I believe I can use my experiences as a woman with a disability to help other people in similar situations, enabling them to preserve their dignity and rights throughout the duration of their hospitalisation.
      I’m currently planning to establish my business as a contractor. I’m in the process of acquiring my own website, intending to promote my own skills.
      Eager to embrace the possibilities offered me, with bated breath, I eagerly await to see how my next chapter unfolds.

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