Gen Y Speaks: I am blind, deaf and lonely. This is how I try to keep my chin up
When I was a child, I was diagnosed with Neurofibromatosis Type 2 (NF2), a genetic disorder caused by four tumours in my brain. I was only 11 when I saw my last sunset. It was 1998.
Humans are social creatures. We need to feel that we are a part of a community to thrive.
For persons with special needs like myself, feeling included is sometimes harder than we hope. After all, we are different from others because of our physical or mental disabilities.
I was not always blind and deaf. During my childhood, when my vision progressively deteriorated, everyone in the family thought it was just myopia.
That was until we realised that the trips to the optician were becoming a tad too frequent. A visit to an eye specialist and the resulting computerised tomography scan revealed that I was suffering from optic atrophy.
I was later diagnosed with Neurofibromatosis Type 2 (NF2), a genetic disorder caused by four tumours in my brain.
I was only 11 when I saw my last sunset. It was 1998.
Heeding doctors’ advice, my mother took me to the Singapore Association of the Visually Handicapped to learn braille and how to use a white cane so that I could travel independently.
Everything happened so quickly. I don’t think I had time to come to terms with being blind.
There are still days where I would fantasise about regaining my sight and regaling at how dramatically the world has changed.
I was devastated when I lost my sight but being blind has also helped me to understand that no man is an island.
In the beginning, when I was still trying to get the hang of braille, I required a great deal of help from my family.
My late parents were by my side every step of the way. My mother would accompany me for my braille lessons and together with my father, they would both read off the text on my textbooks so I would be able to complete my school work.
Performing even the simplest of tasks in life was a struggle. It was impossible not to see myself as a burden to others.
Today, I can travel around independently, though not without the occasional hiccups.
I sometimes end up on the wrong floor and only realise it when I feel that the gate I am trying to unlock isn’t mine. My neighbour must have gotten quite used to this.
In 2012, a group of blind soundball players I knew joined a running club called Runninghour to improve their stamina.
They enjoyed the experience so much that they urged me to join Runninghour, which promotes integration of persons with special needs through running.
I hesitated at first as the thought of running blind seemed too dicey an undertaking for me. But I thought there was no harm in giving it a shot.
The first few sessions were slightly embarrassing as I could manage only a few hundred steps before I ran out of breath. It was also a little unnerving having to put my trust in guide runners whom I was not familiar with.
My doubts ultimately proved to be unfounded. As the weeks passed, I learnt to be led by my running guide.
Even though I have never been much of an active person, I committed to these weekly running sessions for a more active and healthy lifestyle.
Gradually, my fitness improved. I even completed the 10km race at the 2014 Standard Chartered Singapore Marathon, something I never imagined I would accomplish.
But life would soon deal me another blow when I least expected it. In 2018, those tumours in my brain started affecting my ears too.
By March 2019, they had robbed me of my hearing and what stood between isolation and my connection to the world.
After losing my hearing, I felt unsafe going out and taking public transport.
The confidence that I had painstakingly built up over the past few years evaporated in an instant, together with all the beautiful tunes I used to hum along to.
It’s one thing to run without sight. It’s a completely different thing to run without sight and sound.
GRATEFUL FOR LOVE
If you could indulge me for just a few moments, close your eyes to the point where all you can see are blurry smudges of light. Now, cover your ears with your palms.
This is my world, one that is almost devoid of light and filled with a cacophony of buzzing, ringing and disembodied conversations. Being in this state is immensely lonely.
As such, human company has become even more important. The people around me, through physical touch and their text messages which I receive in braille, are now my only connection to the world.
The author (left) with her running guide at Runninghour's Run For Inclusion 2020 event at the Singapore Sports Hub on Nov 28, 2020. Photo: Runninghour
Just as it seemed things couldn’t get any worse, the onset of Covid-19 exacerbated my overwhelming sense of isolation.
My heart sank when I realised that I could no longer have lunch with my colleagues like I used to. My colleagues had been my main source of socialisation, at work and after work.
As many of our meetings have since been held virtually through audio and visual platforms, I would rely on getting my information for work through a Google document where my colleagues will be typing the meeting proceedings in real-time.
Silence was never more deafening and I have never yearned so much for connection with others.
Work from home measures also meant that my days are defined by a monotonous routine of sleeping, eating and working.
While many people have the luxury of binge-watching shows like Crash Landing on You on Netflix, there are not many other activities I can do in my spare time except reading braille.
With my life becoming dreary, dark, depressing thoughts began creeping into my head again.
Fortuitously, Runninghour’s founder, John See Toh, texted me before Phase Two started and asked me if there was anything it could do for me.
He even offered to assign permanent guides to me so that I would be in the company of only those who keenly understand my condition.
John and the running guides would fashion a series of touch-based signals that indicate instructions such as “ready”, “stop”, “faster” and “slower”.
It was an offer I couldn’t refuse. It was the reprieve I so desperately needed to escape the pernicious grip of loneliness.
I knew that being able to run again would be a boon to both my mental and physical health.
It has been almost two years since I became a deafblind, and the pain is still raw.
I’m not ashamed to say that there are many moments when I think that life has lost all meaning. How do I cope?
Sometimes I cry. Most of the time, though, I try my utmost not to dwell on what I cannot change and to take comfort in the fact that I have people around who genuinely care for and love me.
As I approach the end of yet another challenging and difficult year, I choose to remain grateful for the unconditional love that I’ve been able to receive.
Through these actions — colleagues who help me to remain accountable at work, a community of individuals who so willingly invest their time to get to know me — I feel that I have a reason to be hopeful and courageous for my future, whatever the challenges may be.
Who knows? Things may just get easier, with the support that I have from the people around me.
ABOUT THE AUTHOR:
Tan Siew Ling, 33, is an administrative assistant at a local company.
Related topicsinclusive society mental health Covid-19 disability
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