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Malay Mail
Blogspot
May 13, 2008

I met my Wuan online!
Teoh El Sen

PETER GABRIEL TAN (www.petertan.com), who will be 42 soon, got married six months ago to someone hemet online nine years ago.
She is the most wonderful person who is supportive of the things that I do,” he says.

And he’s quick tomention that she has a photoblog (www.wuan.org). Peter’s weblog is called The Digital Awakening with the tagline Living One Day At A Ttime.

I became a tetraplegic at the age of 18 when I dived into a swimming pool and suffered spinal cord injury. I havebeenusingawheelchair since,” says Peter, born and bred in Penang but currently based in Kuala Lumpur.

SpinalCordInjury(http://sci.petertan.com/) was the first site he created, and that was in 1997. And since then, a fewmore.

But Peter aims to take a break, as “I have written all that needs to be written in more than 300 entries.

I have nothing new to say anymore….

Tell us a little bit about yourself.

I am a peer counselor for the Independent Living Programme for People with Disabilities.(http://www.cilpenang.org) Essentially, I conduct programmes to empower severely disabled people to regain their selfrespect, understand their rights in society, evaluate their goals in life and work towards that.

I am also an advocate for an accessible and inclusive Malaysia. At the moment, disabled people face great difficulty because of attitudinal and environmental barriers. Many are unable to move around safely and conveniently due to the lack of accessible facilities and public transport. Infrastructure should be created to cater to the diverse needs of society, not only for people who can walk, but this is usually not the case. That is why there is a real need to advocate in the interest of disabled people who are still being marginalised and left behind in mainstream society.

How and when did you start to blog? I had several websites hosted at Geocities in the early 2000. Manually updating the links to existing pages each time I added new pages was tedious. It was also during that time that I began to read blogs and noticed that updating was done at the back-end effortlessly.

I posted my first entry at Blogspot on January 28, 2003, and have never looked back since.

Any reasons? I kept a diary before that.

Blogging is a natural extension to it. I had no idea how it would turn out. I just wanted a space to pen my thoughts and the story of my life. Being able to share it with other people was a bonus.

What have you achieved through blogging? The greatest gain from blogging is the many friendships that were forged with readers who live in places that I never imagined I would ever visit. We would not be able to get to know each other if not for my blog.

I’d like to believe that through my blog, I have given disability a face toMalaysian society that disabled people are just like everyone else. We have needs, emotions, ambitions and would love to lead fulfilling lives.

We are no different fromthe people that you meet everyday in the market, of!ce or shopping complexes.

Thewonderful thing about blogging is that it allows me to do what I do more effectively to a wider audience.

Through my blog, I disseminate information on disability.

Whenever the opportunity arises, I stress on the Social Model of Disability which states that people are disabled by attitude and the environment rather by their conditions. I am glad that they now have a better understanding of these issues and are supportive of the cause that I amadvocating.

Do you have any regrets through blogging? None whatsoever.

How has blogging changed your life? I have learnt a lot about myself at a deeper level.

Each time I put thoughts into words, I challenge myself on my understanding of the issues that I am writing on. Blogging has allowedme to bring out my inert emotions and ambitions. That has made me realise many things about myself and matters that are close to my heart.

I like writing and photography.

This blog has allowed me to do both in the same place. Apart from that, I like tosavourgoodfoodalthough that has been severely curtailed by the low-protein diet that I have to follow because ofmy kidney disease.

The ‘blogosphere’.What does itmean to you? It’s the place where we say the things that we do not usually say in real life.

Who is your absolute favourite blogger? To me, the integrity of a blogger is of utmost importance.

They must stand by what they write come hell or highwater. I do not have one favourite blogger but I have high regard for social- political bloggers who, knowing the risks, still openly reveal their identities and write critically on current issues.

The water pressure has gone back to normal today. Water supply was restored two days ago actually but the pressure was low. It was better yesterday. I emptied my bowel today because of that. Nothing cleans as well as water. I am a happy camper. I have never gotten used to cleaning with toilet paper. Somehow it just never felt clean even after I have exhausted one whole roll.

The cloudy urine has cleared somewhat. But I am still tired. I think I may have drank a little too rapidly. My urine is too clear to be urine. Turned on the air condition in the room and tried to sleep at around 2.30pm but could not. Called Jocelyn to confirm with her that Wuan and I will be attending her wedding. Congrats auntie! Looking forward to seeing you all decked up. Called up a few friends from Penang to chat after that.

I am still tired now. Dang. I believe the weather has a part in this lethargy. I am looking forward to the weekend. Wuan and I have planned a trip up to Ipoh. We are going to hit two birds with one stone. One of them is to get Patches neutered. He turned 6 months old on May 1. The thought of Ipoh food is making me salivate. No, ngah choi kai (bean sprout chicken noodles) is not one of them. The rest… yum yum.

Early Sunday morning, I woke up shivering. It was not the air conditioner. I knew what it was as I had sort of anticipated it. Chills are the first and unmistakable sign of a urinary tract infection (UTI). It was around 4.00am then. I know for sure because I turned on the television to watch the AXN channel.

I must have caught it during the urodynamics study. It is not an uncommon occurrence after this procedure. No matter how sterile the gears were, somehow somewhere during the process, something was bound to be contaminated and the contaminant introduced into my urinary tract.

In the afternoon, I took two Panadol Actifast tablets and the fever or chills has not recurred since. My urine has been cloudy for the past two mornings though. It clears up as the day progresses. I have been drinking water a lot to flush out whatever that is still inside. I have also been drinking cranberry juice.

I know I should be seeing a doctor for this. UTI in people with kidney disease is no small matter. The infection may just wipe out the little that is left of the renal function that I still have. Tomorrow. I will make it a point to see a doctor if the urine is still cloudy tomorrow. For now, all I want to do is to lie down and go back to sleep.

For all the years that I have been living with spinal cord and chronic renal failure, I have not had a urodynamics study done to determine the pressure in my bladder. This test is needed to determine whether the pressure in the bladder will cause a reflux and further damage to the kidneys.

I had one done at SJMC last Saturday for once and for all as to see if the pressure in my bladder is the cause of my renal failure and whether I need further treatment. I have been waiting to get it done at UMMC but two appointments were cancelled. The first time was because the urologist was away and the second because the urodynamics clinic was under renovation.

All garbed up at SJMC waiting for the urodynamics study to commence.
Photo by Wuan.

There is usually a six-month waiting period at UMMC but it would have been done free of charge there as I hold the Kad Orang Kurang Upaya from the Department of Social Welfare Malaysia. It costs RM1,500 at SJMC. Another urodynamics study was schduled for mid-June at UMMC but I thought I better get it done first at SJMC just in case the one at UMMC gets cancelled again.

The procedure was not as embarrassing as I had anticipated. The technician was very patient in explaining the entire procedure and made me feel at ease even though I was bare-bottomed throughout. A thin tube was inserted through the urethra into the bladder and another into the rectum. The tubes were connected to a device that fills up the bladder with saline at a pre-determined rates - 30ml/min and 15ml/min, measured the pressure in the bladder as it filled up until urine started to leak.

The equipment used for the urodynamics study.
Photo by Wuan.

Another device was placed right below my seat to measure the amount of urine that leaked. After that, the residual urine in the bladder was sucked out with a syringe and measured. The results showed that the presurre in my bladder is normal until the volume is around 300ml where the pressure rises to slightly more than 50cmH2O and the fluid started to leak. The leaked volume was around 100ml while residual volume was around 200ml.

According to the urologist, as long as I keep up with my three hourly intermittent catheterisation programme, it should not be a cause for concern as reflected by the results. No further treatment or medication is necessary. He recommended that I get the urodynamics study done every two years. He also checked the lump in my scrotum which has gotten smaller after a two-week course of antibiotics. I am to go back to see him in two months to get the lump checked again.

Difficult it may be for me to tear myself away from writing on disability rights in this blog, I have decided that I have written all that needs to be written in more than 300 entries. I have nothing new to say anymore. It has come to the stage where the points that I raised are repetitions of what I have written many times before. I should really stop flogging the dead horse now.

This hiatus will do me a world of good and perhaps provide a fresh perspective on the entire issue. The work is not done yet but this workman needs to put down his tools for a while to concentrate on some personal pursuits.

I miss those days when this blog was more personal and my entries were more emotional. I hope to egg my writing on to that direction again. This also reminds me that the weekend is almost here. The one thing that I really really wish to do come Sunday is to wish Mum a “Happy Mother’s Day.”