received a text from mx back in june requesting my help in a photoshoot which she was submitting for Project DreamCatchers 2014... am so glad that i was of help in clicking the camera for her... and finally it was the day of the exhibition on 25 July 2014
us at the exhibition
An interview of her and another fellow exhibitor with First Look Asia
which seemed to have 'edited a little more than little' of what her initial responses were....
anyway, the uncut version as posted on mx's FB for clarification:
Channel News Asia Interview - Unedited/Uncut version (with post edits of explanations of the series of photos)
1. What were the circumstances that led to your diagnosis of Vasculitis? What were the symptoms?
It started off with a non-itchy reddish patch near my knee when I was 18. I went to the National Skin Centre but they didn't have a significant diagnosis, and nothing else happened until about a year later. I woke up with a foot drop, which means you can't lift up the foot or move it down. It was like I lost total control of my foot and I half walked half dragged my foot to the GP, who immediately sent me to the hospital. There, they ran a series of tests and I was diagnosed with Vasculitis.
2. How serious was your condition, when you were first diagnosed?
It basically affected the nerves of my left foot, so until now, I don't have full sensitivity in my left foot, which means I have to be careful, as I may trip and fall if I run or worse, cut myself and not heal properly. I'm also on long term medication such as steriods, and it has caused me early onset of osteoporosis. When I am in remission, I will put on a strong front, as I want to live my life the best I can. However, when I have a flare, it will cause my skin to break down and have very painful vasculitic ulcers. These have caused me to be hospitalized a few times as I couldn't continue walking, and you can't sleep for nights because of the pain. In my journey, I have also had urticarial vasculitis, shingles, loss of sensitivity in my right hand's nerves due to the unpredictable nature of autoimmune illnesses. On a day to day basis, I don't wear skirts as I have scars running down my legs and the sides of my legs. These are my 'war scars' left by the vasculitic ulcers.
3. What challenges did you face as a Vasculitis patient?
The lack of relevant information has been very frustrating. When I was first diagnosed at 18 years old, I tried very hard to search for answers, but the information on the Internet wasn’t relevant to the Asian context, and I couldn't find anyone to talk to. I even tried to set up a Yahoo group, but I guess social media wasn't very popular then, and no one joined. So fast forward to many years later, I've decided to set up my own autoimmune illness support group on meetup.com. We are still a very small group and we can't offer medical advice, nor can I guarantee you that you will find another person with the exact illness. But we will listen to your stories with an open heart, offer our support and understand what you are going through.
In other aspects, during remissions, I would probably term them more as restrictions. People with autoimmune illnesses tend to get tired more easily, so it is really a matter of managing our lifestyle. Another restriction is that I can't walk very long distances, so hiking or doing sports is not really something I should do, and it's sometimes hard to get people to fully understand as I look healthy. Having early onset of osteoporosis probably also means that I should really be more careful and not have a serious fall. My condition restricts my blood vessels, so I am extremely sensitive to cold, and I used to get bruises on my arms in air conditioned rooms, and people around me have asked me about them. I guess I'm lucky in a way that we live in a tropical country, though that would mean taking extreme precautions if I travel to cold countries.
4. What did you do to relieve such emotional, psychological and social aspects of your condition?
There were definitely times when I felt depressed at my restrictions or particularly when I had a flare and I couldn't sleep at night due to the stabbing pains (that pain killers couldn't help). I guess I just told myself that I would get through it (as I have done so before), and to look forward to the good things in life. My friends and sister have also definitely played a part in lending a listening ear to me when I need it, which I am extremely grateful to them.
5. You actively lend your support to groups in helping people with special needs or rare disorders. What do you do exactly, and why is supporting the cause so close to your heart?
Well, in my line of work, I have chosen to teach children with learning difficulties in Students Care Service. This cause is close to my heart as their learning difficulties are usually invisible such as dyslexia, autism and speech language impairment. For example, for dyslexia, they can speak really well, but suffer from a reading difficulty. And for autism, they are lacking in their social interaction and communication, and these behaviours can be interpreted as being very rude. What these children need are specialized help from professionals, like my colleagues in SCS. In other aspects, I am a wish granter in Make A Wish Foundation that helps children with life threatening illnesses. I've also helped out in Photovoice SG when they worked with people with HIV. I'm also currently organizing board games for families with children with learning difficulties in Toa Payoh Central CC.
6. How did your condition change your perspective of things, of life?
That life is short. You only have one life. We should live our life to the fullest and use our time on this earth to make the world a better place for everyone to live in.
7. What is living a fulfilling life for you? How does one do that?
I think sometimes you need to live with a little risk. So that means pushing yourself to do something that you are not comfortable with, going out of your comfort zone. It need not be something very drastic, but you should, because you never know what you can achieve. For example, I participated in the programme 'SSEAYP' (Ship for the Southeast Asian Youth Programme). This is a 53 days journey around Japan and the different Southeast Asian countries in which you are the youth ambassador of Singapore. We do cultural exchanges and go for homestays in the different countries that we visit. It wasn't something that I thought I could do as it involves committing yourself to a full 3 months pre-departure training (2 weekday evenings and a full weekend) and it demands a lot of physical energy for the entire journey. Unfortunately, just before the trip, my illness flared, and I had some vasculitic ulcers which made it painful to walk for long distances and I had to make a decision if I should proceed on with the journey. Although my doctor wasn't very agreeable to me going, I decided to take a calculated risk and went for it. I've never regretted the decision, as I've made so many wonderful friends in the different countries.
Another aspect of living a fulfilling life is really to try out different experiences in life. For example, like traveling alone. I've met the most amazing strangers who have extended their hospitality to me although we didn't know each other.
8. As far as possible, you try to lead a normal lifestyle - How did you keep up your positivism? Have you always been this way?
I think I have quite a positive mindset and volunteering helps me to keep up my positivism. But most importantly, I think I get inspired by many people around me who have their own struggles. I hear so many inspirational stories through my own work or volunteering work. These people are my sources of inspiration. The human spirit is far stronger than what we give credit for. We can all conquer great heights and fight our battles bravely.
9. Despite your condition, is there anything that you found to be happy about / thankful for?
I'm very very thankful to be able to do the things that I can do, because I know my illness can be even much more extreme than what I have went through. So even just walking on the street, or sitting here talking to you, I'm very contented and grateful. As for happiness, I'm very happy to have made so so many wonderful friends through my schooling days, volunteering and work and know so many people out there who are inspiring and volunteer their own time for charitable causes, like the volunteers in my organization, Students Care Service and in Toa Payoh Central CC.
10. What’s your advice to people who may be struggling with similar condition?
Be open about your struggles and share with your friends, even if you think they don't understand. Reach out to people who are willing to share their stories, and you will find that you are not so alone. And that there will be people who can relate to you, even if it's not the exact same illness. Above all, always live life to the fullest and help other people when you can.
11. What more should be done to help improve the lives of individuals with chronic illness?
There should be more awareness of autoimmune illnesses, starting from the hospitals. The hospitals could conduct talks on such illnesses so that at least people can understand more about their illnesses. And perhaps from these talks, people will start to form networks among themselves, and are able to get some support from each other. I know of people who have went through much suffering before they were properly diagnosed and got started on the right treatment. This is due to extremely low awareness of such illnesses. If there is more information and more people talking about such conditions, then there's a better chance of people and doctors connecting the dots earlier, and at least easing the suffering much earlier.
12. What are your hopes for the future?
I hope for more awareness of rare autoimmune illnesses, and that I can make a difference in other people's lives.
(Questions on Photovoice SG)
13. Tell us about your inspiration behind these shots. What’s the significance?
The first photo was to show that my hopes of being a ballerina was dashed due to this condition, while the second one was to depict the stabbing pains that I went through when a flare occurred, which resulted in vasculitic ulcers.
(Post edit: The first photo is also symbolical in nature, meaning that because of this illness, certain sports or activities that require more physical exertion would be ruled out. The third photo was akin to a 'coming out' to face the world, but through photography, as I don't wear (and still won't wear) skirts to hide my scars. I wanted to challenge the viewer's thinking with this series of photos. Do you know what struggles your friend/neighbour/teacher might be going through? How much does a person's looks play a part in your judgement of that?
14. What message/story did you intend to share through these photos? Why is it important for you to tell this/these stories?
Through photography, I hope to bring across what I am unable to express clearly in words and bridge gaps in people's thinkings and perceptions (e.g. you don't look like you have an illness, you look so healthy!)
My message to other people is to have an open heart and mind when listening to other people, and not be too judgemental as when we are not in the other person's shoes, we will not know exactly what they are going through.
Lastly, I hope that other people with such illnesses will step forward to share their stories.
thanks to this interview, i got to know more about mx and the reasons behind her 推动力 to contribute back to the society and helping the less fortunate despite her conditions.
加油 mx!!! It is you who got me started on my baby steps towards regular blood donation and doing a teeny weeny bit of charity work... i promise you and will keep myself in check to increase the quantity yearly till it becomes a regular part of my life despite being a nua nua princess..=P.. Thanks for being my inspiration.
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closing this post with a few other works which i managed to snap a memory of before escaping from the gallery which was overflowing with supporters....
