LIVING IN BETWEEN TWO WORLDS: A Memoir - PART 1
Please join me on this adventure and enter into my world. You can find my intro post here, Living with Blindness, my story.
Part 1: Growing up in China
China in the early 1980s is a much different place to the China we are familiar with today. Back then, the economy had not yet exploded. China had just come out of the Cultural Revolution, and the One Child Policy was just starting to be enforced.
Shanghai, roughly the population of Australia, was the place I spent the first years of my childhood. The concentrated over-population of this urban city meant that many families were forced to cram into small apartments together, of which my family was no exception.
My mum, dad and I lived together in an old three-bedroom apartment shared with three other families. My uncle’s family of three took the master bedroom, grandparents took the small bedroom, and our neighbour’s family occupied a bedroom on the other side of the corridor. Our family lived in the attic space, which was more suited to a storage room rather than a bedroom. The low, slanted ceiling meant that when we got into the room, we had to lower our heads to avoid any injury. To climb into the attic, we had to climb up using a fragile portable ladder. On one occasion when my mum was still pregnant with me, she was climbing up on the ladder, lost balance, fell down and injured herself. Thankfully she recovered and my life was spared.
Although the living conditions at that time were tough for our family, I enjoyed my childhood living among so many people. I remember always wanting to play with my two older cousins, Liang who was six years older than me, and Huochen who was three years older. As our age gap was quite big, they always wanted to ditch me when they were playing. However, each time they tried to get rid of me, my strategy was to dob them in and complain to my dad. In response, my dad would always give them a gob-full and tell them off for being bad older cousins.
My memories of living in the attic were generally unpleasant. I remember my rather revolting habit of picking my nose each night and sticking the snot on to the wall next to my bed. I remember the dirty bathroom and toilet area that was shared between all four households in our apartment. It didn’t contain a functional shower or bath. The only way to clean ourselves thoroughly was our regular visits to the public bath.
I remember the noises from my dad’s love of Mah-jong, a popular gambling game that many Chinese families indulged in for their recreation. However, his excessive Mah-jong habits gradually affected his relationship with my mum. Along with other issues in their marriage, my mum and dad divorced when I was four years old.
Life after the divorce of my parents
Following the divorce of my parents, my mum and I moved out to live with her brother’s family and her parents. Again we were squeezed into a tiny apartment, this time two bedrooms shared between eight people. Apart from the difficult living situation, life in my new home was very enjoyable. Everything seemed quite normal to me. I didn’t understand what had happened. The only apparent change for me was instead of playing with the cousins on my dad’s side, I now played with the cousins on my mum’s side, instead of games with tiny plastic soldiers and trying to climb into enclosed parks, I now played with marbles and tried to catch crickets, frogs and pigeons. Back then, my parents didn’t tell me about their divorce, and my innocent mind had no understanding of the gravity of what had taken place. All I knew was that for some reason my parents weren’t living together any more.
Whilst living in my new home, I started attending kindergarten and everything seemed normal until one day in class one of the teachers noticed something wasn’t right with me. The teacher noticed that when she presented arithmetic questions verbally, I would be one of the first kids to put my hand up to answer the question. However, when she wrote the questions on the blackboard, I would be one of the last to put my hand up. This perplexed her, so one day she told my mum about her finding. Immediately, my mum took me to a well-known hospital in Shanghai, and the doctors concluded that there was something wrong with my sight. They diagnosed my condition as Amblyopia or also known as Lazy Eye. My mum was advised that to treat this condition, I would need to purchase both a torch-like device as well as a device which looked like a computer monitor. Both of these devices would flash light into my eyes, and my daily exercise was to look at this bright light. However, following months of adhering to this advice and staring intensely into this flashing light, there was no noticeable improvement in my sight. This troubled my mum, and as a result my mum took me to see one of the top eye specialists in Shanghai. To our shock, the specialist told us that I had been misdiagnosed.
The diagnosis
The diagnosis this time was much more serious. My mum was told that I have a retinal eye condition which would eventually lead to total blindness. This news drove my mum to tears and she was incredibly sad for many months. It was only later that we found out that this diagnosis was also incorrect, and that I have a genetic eye condition called Stargardt’s Disease. This eye condition would cause deterioration in my central vision until it was almost completely gone, but the good news is that my peripheral vision would still remain and I wouldn’t go totally blind. I also later found out that exposure to bright lights was harmful to Stargardt’s sufferers, and the intense lights I received as part of my initial treatment actually served to accelerate the deterioration in my vision.
In China at that time, when a person had a disability, they were extremely discriminated against, and it would almost be impossible for a person with a vision impairment to receive a proper education. If I continued in the Chinese education system, I would have most likely not even finished high school due to the lack of support available for a person with a disability. Employment for a person with a vision impairment would have also been restricted to a few occupations such as blind massage therapist or music related occupations. The gloomy outlook of my prospects in China drove my mum to despair. However, mum wasn’t one to give up so easily. Instead of complaining about the circumstances, she sprang to action. She knew what the solution was, the only solution that would provide me with hope for the future.
You can read Part 2 of my memoir here.
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Until next time. Jimmy