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Burn Survivors not only have to deal with
physical pain but also emotional pain as well. For many survivors, life has
changed and will never be the same again.
During my stay at the burn ward, a Mr. Lim a
former patient at the burn ward, came to visit me. Years ago, he suffered 30%
burn while burning rubbish using flammable material at his own home.
Talking to him felt good as he knew what I
was going through and the difficulties that I would be facing in the future. He
was understanding and gave some good advice.Seeing that he managed to get back to his life despite his challenges, gave hope and indeed inspired me.
On the other hand, there was also a burn
patient, a Mr. Tan who was burnt a few years before my accident. He had an
epileptic fit while burning rubbish and was burnt on his face. He was admitted
twice again for infections during my stay at the burn ward.
could clearly remember Mr. Tan telling me to exercise, to
stand, to eat a vegetarian diet, to do this and that and the list goes on. At
that time, I was still immobile, so I couldn’t escape. On his part, he meant
well, just that I wasn’t ready to be lectured. However, I am still grateful that
he made the effort to talk to me.
Indeed, they were two different people with different
In Malaysia there is no Association for
Burn Survivors or any Support Group available. I find this quite strange as the
number of people who gets burn yearly is not exactly low.
One day, my sister came across
Phoenix Society which is based in the USA while she was doing her research on
“They have a chat at 9pm on every Wednesday”,
In Malaysian time it is on every Thursday
Initially, I hesitated and thought that they
would only cater for US citizen. My hesitation melted away on my first chat with them. They welcomed all burn survivors. I have been joining the chat group since
January 2017, every once a week, whenever possible.
The people there are so welcoming. It is
good to know that I am not alone in facing my problems with regards to my burnt
skin. Mostly it is emotional support for the grouses and the problems that burn
survivors are facing. I noticed that most of the grievances revolves around
people who are not so supportive or are unsympathetic towards burn survivors.
They could be family, friends, colleagues and even strangers.Basically, it boils down to ignorance of
society with regards to burns.
The Phoenix Society is doing a good job in
helping burn survivors and also in helping to create awareness of survivors.
They even have annual conferences and burn camps. Hopefully in the future,
Malaysia will have such a support system to help burn survivors and also to
create awareness on burns.
If we can have a Cancer Society and Society
for Dementia, why not a society for burn survivors? A place where burn
survivors would feel that they belong and have activities together instead of
feeling alienated and shunned by others. Assisting burn survivors to integrate
back to society.
A month ago, the Phoenix Society for the very
first time, held free live streaming of the World Burn Convention. Even though
I had to stay up very late at night, the sacrifice was worth it.
With the advancement of the internet, there are
online support groups for most type of diseases or medical conditions.We are not alone in dealing with our
problems. Sharing our problems and learning from others is a step forward towards
our own healing.
Last week, I
visited a friend who is suffering from Neurofibromatosis type 2 (NF2), a hereditary condition that causes her body to produce multiple tumours
throughout her life. Link to Yvonne's blog .
Photo was taken from her Facebook She
was supposed to go to the United States of America in May 2018 for a
cervical spine surgery. Unfortunately, before the trip, she fell on
her back and hit her head. She had to undergo a critical brain surgery instead
in Kuala Lumpur. The money she collected for the surgery in USA was all spent
on the brain surgery.
When I saw her,
the first thing I noticed was the protruding feeding tube at her stomach. Food
had to be
inserted through the feeding tube. Yvonne is deaf and blind. She is still bedridden and immobile as
a result of the fall she had in May 2018.
with Yvonne, I had to write an alphabet at a time, slowly on her palm. If she
doesn’t get the word, it must be
written all over again. It is best to use few simple w…
The birth of Patrick changed my marriage life from the two of us to the three of us, a family. We were excited, happy, worried followed by all kind of emotions for our baby son. So many things to learn, to experience. Breastfeeding, constant thoughts on our baby's well being especially when his jaundice appeared to rise during his first month. The lacking of sleep. There were moments I observed his breathing while he slept. We were amazed by every new mannerisms that Patrick displayed. We were so charmed when he first smiled to us. I would observed how gently my husband would treat Patrick and how Patrick would looked up to him, listening to his every word.
We were enjoying ourselves as new parents until something happened in the middle of November 2017 that changed our lives forever. "There is something not right with his stools."
My sister in law remarked to me while I tiredly changed Patrick's diapers. Mentally I can be exhausted as new mothers would be. We visited my s…
We could not believe how fast the funds came in after we uploaded our video appealing for funds to Patrick's liver transplant surgery fees.
I admitted that money was one big worry for without it, the surgery would not proceed. Once HOC set up the appeal on our behalf, I prayed. I prayed hard to God.
Suddenly a thought came. A video of us as a family, making a plea to friends, family and public. To save Patrick by donating to his surgery fees.
So, we quickly set it into motion on 22 May 2019.
I could not imagine the responses came beyond Malaysia - Australia, Singapore and more. From people whom I had not talked to for a few years, willingly came forward to donate, send a kind word, prayers and spread the video to their friends.
Before we go forward to the public, another worry I had was my mother. She has anxiety over Patrick. There were times I had to calm her down, assure her everything shall be fine when I admit I do not actually know whether it is so. I don't wish for my mu…