My Life Story

issue 1

by Edwin Chew

To start with, I’m a Duchenne Muscular Dystrophy patient, a fun loving guy, age 27 turning 28. But on the contrary, I’m not a very outspoken person; hence, I’m not very good in expressing myself. I like to explore new things and places, like most people I’m a food lover, tasting delicious food makes me feel delighted.

A few things I like about myself, is that I’m a self-believer, believing in myself, and I’m a perfectionist, not easily influenced by other people. Sometimes, I even suspect that I had a certain degree of narcissism. I have been seeing the doctor ever since I was 5 I was found to have Duchenne Muscular Dystrophy.

Since, it’s a chronic illness, over the past 23 years; I had seen many doctors to monitor the progress of my condition, and to get advice on proper treatment, such as physiotherapy and assistance for equipments. For instance, just few years back, the doctor said that I need a bi-pap normally known as a respirator, to help me breathe better. Through a medical social worker, I applied for financial assistance for that respirator. Because of the illness, the relationship with my mum has not been very good. She is the only one taking care of me most of the time. As I grew older, my condition worsens. It is just too much for her to take, the scolding and slapping came naturally. Sometimes I cannot help it but to start bickering with her.

I ought to understand that my parents, especially my mum who also have a similar condition like me must be physically and emotionally tired while trying to take good care of me. At home, mum would be the only one with me, taking care of my daily essentials from showering, toileting as well as cleaning up and dressing. Dad would help out when he’s around. I have to face a lot of setbacks and rejections in life; it’s hard to tell people how I feel. In school, I relied on help from classmates to move me from stairs to stairs, helping me to retrieve my books from the bag and during recess time.

I always felt that I’m way too far-fetched from the others; I tried my best to catch up in studies although I’m not trying to aim for a ranking. As part of growing up, being in love was one of the hardest things to the extent that I dare not think about it.

But, what meant to come would still come. I met a girl, in Secondary 3; she was a classmate of mine. I couldn’t remember when I started to develop feelings for her and even get jealous. But of course, when she found out my feelings, I got rejected. I acted as if nothing happened back at home, did not even mention anything in front of my parents. I must be lucky to have classmates that talked me out and comforted me.

Of course, there would be some classmates who passed nasty remarks or even joked about it. I felt my self- esteem had been threatened.

People see chronic illness with a negative attitude. Having thoughts of chronic illness will overwhelm them with fear and uncertainty. They have the tendency to think that chronic illness is often associated with old age and unhealthy lifestyle, but that’s not always the case. A healthy person may not be as mentally prepared as someone whom is living a life with chronic illness when it comes to taking care of themselves or the ones they love were to face with such illness.

We should always keep in mind that there are chances that anybody may get chronic illness, and should always be prepared for it. It is also important for the patient to gain moral support from friends and family. Social acceptance and understanding also plays an important role in this case. Although, there are certain things a patient with certain chronic illness cannot do, we
should still live a life to the fullest, no matter what the obstacles are.

I see myself as someone who is living my life in a different way, seeing things at different angle from others. I hope people will not see me as anyone special, and treat me indifferently from others.

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