I eat the two slices of bread at both ends of a loaf of bread, not because I love to eat them. I actually don’t like them much. Its texture is vastly different from the other slices of bread in between the two ends – soft, bouncy and aromatic.
I eat them because no one else would. To throw them away is unacceptable. I’ve been brought up not to waste any food. Mum would make us eat leftovers until there are no more before she would make something new.
As I sit and watch my kid dipping his hand into the plastic bag containing a fresh loaf of bread and carefully extracting a slice of that soft, bouncy aromatic bread in between the undesired two ends of the loaf, I wonder if I had been a poor parent – I have failed to help my children take the bad with the good.
I’m dreading the haze-white Christmas
Not like the ones I used to know
Now the tree tops are missing
And children are wheezing
Asthma with low expiratory flow
I’m dreading the haze-white Christmas
My middle finger is upright
Indonesia is burning and bright
Making all our Christmases haze-white
I’m dreading the haze-white Christmas
Never like the ones I used to know
Now the wards are buzzing
With old men wheezing
C…O…P…D…wracking them poor souls
I’m dreading this haze-white Christmas
To every fire-starting-arse I write
May you get cancer and die…
And may all your Christmas asses
May all your Christmas asses
May all your Christmas asses be fried
Recently I had the opportunity to attend an ’empowerment workshop’ over a weekend organized by an NGO that I have been working closely with for several years. The attendees consisted mainly of people who had been recently diagnosed with HIV infection. The objective of the workshop was to help and empower them to learn to live with the condition through mutual sharing, mini talks and games.
It’s really a lot like the many Christian camps that I have attended in my youth, without, and understandably so, the emphasis on faith and beliefs.
Most of the attendees were young men, most of them were MSMs (male-who-have-sex-with-men); some were as young as 19 years old.
It was my first time in such a workshop. My role was minor – just deliver a mini lecture on opportunistic infections in HIV. That’s all. Beyond that, I was merely a spectator to most of what unfolded over the weekend.
And what an eye opener it was for me!
The stories they shared touched me deeply.
A few were infected because they were broken hearted by broken relationships and sought solace, with the wrong people in the wrong places,
Others came from broken homes and suffered under abusive fathers.
Others tried chem, or drugs and went through the path of living hell.
Some acquired the infection from the people closest and dearest to them.
The stories were painful and sad. But the stories were also powerful and strong. They were shared by people who had been shipwrecked, often at the prime of their lives – at the pinnacle of a successful career; just before graduation; right after a promotion; after acquiring material wealth and relational happiness; at the height of their physical ability, and the list goes on and on.
And then, the little virus, bearing a single stranded RNA took it away.
But not all of it.
The stories were shared by people who arrived a point in life where they decided they will fight the infection. At least two contemplated suicide but did not go through with it because that would mean the virus wins. To give in would mean accepting defeat. Others clawed their way back to health, through medications, religion, strict exercise regimes, and healthy living. Many paid tributes to their mothers, partners and friends – people who stood by with them when they needed help most, people who would not let go.
A few shared that their infection actually helped them become better people – now everything is more beautiful, brighter, more colorful, and more meaningful. HIV made everything more precious.
Forty went to the workshop as strangers and left as friends, sharing a unique bond that only they could truly appreciate. There were times, I almost felt like an outsider, sitting in a corner, given the rare privilege of a glimpse into their secret lives. It touched me deeply and I’m grateful to be privy to it all.
I came away with a lot of positive feelings in me. The human spirit is strong. It has to be. I believe it is divinely patented. It will not yield. Given the proper support and nourishment, it will rise. Despair can become hope.
I felt encouraged, strengthened, refreshed, and grateful.
“What happened?”, some one asked me on Facebook.
So many things happened that morning, with each episode sapping some of my energy, that by noon, I was a wreck of a human being, feeling exhausted, defeated and on the brink of giving up.
A sobbing student started off my day.
A healthcare worker who sustained a needle stick injury the day before was referred to the clinic – the only problem was the doctor who attended to her the previous day did not bother to draw blood from the source of the incident, preferring to rely on laboratory results that were 5 months old. The doctor’s decision negated proper management of the healthcare worker. It took us sometime too to trace the doctor and get the story. Precious time wasted that could have been used to see other waiting patients in the clinic.
Another needle stick injury referral, but this time from the Emergency Department (ED) where the too-clever-for-his-own-good doctor took it upon himself to manage the case WITHOUT referring to the medical doctor on call. The case was mismanaged, unsurprisingly. Again, time wasted trying to sort things out.
An unscheduled visit by a patient who fell and sustained a swollen leg and ankle. She even slapped me on the thigh when I suggested that the injury was probably mild (and it turned out to be mild). First time I was ever hit by a patient. (She apologized later). Her unscheduled visit delayed the clinic’s smooth running.
A patient turned up bearing a referral letter that was written in 2011! He didn’t want to turn up earlier because he was ‘scared’. He turned up now because he felt ‘weak’. His CD4 was only 16. It’s gonna be a long road ahead to help him regain his health.
My own resident counselor was sick. He told me he was sick. He had been sick for more than two weeks. Coughing incessantly and running a temperature. He hovered around me like a kitten waiting to be fed. I said I would attend to him as soon as I have time.
A patient who chose to default on his therapy years and years ago, preferring to take his meds as and when he felt like it. Now he is slowly dying. None of the meds would work anymore except two – and I didn’t have one of them. Buying them would be beyond the ability of any average Malaysian. I told him to wait for a few months while I try and find a solution. I’m not sure if he could wait that long.
Another similar patient, who decided to do the same as the guy above. At least this guy have some support. He has a loving spouse. And they were willing to buy one of the meds. It would cost them about RM 1300 per month. I would provide the other one. It’s what we call a ‘salvage therapy’ in HIV Medicine. It might work, but again, it might not. But now he is battling a fungal infection that has ravaged his entire body – it would take at least year of antifungal medications to eradicate the fungus. It’s worth a try. There’s no other alternative.
An elderly woman came, sobbing away. She stopped her medications – because they made her drowsy. She needed to be alert to work – to earn a living. She has no one else in this world. Her eye sight was so poor she had repeatedly cut her fingers while doing house chores. Her fingers are bandaged in plasters. We referred her to the welfare department months ago. We never heard from them – as usual. Most of my cases referred to the department were never attended to. Last week we had a patient who was referred TWO YEARS ago, and we are still waiting for a response. My blood boils inside. I wish the welfare personnel-n-charge some personal tragic events – so that he would suffer and it would help him see that desperate people referred to him all need help and he cannot play god. I told the woman we will try and find some help for her. I don’t think she believed me. Heck, I don’t even believe myself.
There’s the other patient who obviously needed treatment, and decided not to be on therapy but would rather try some traditional remedy. I let him. No point arguing.
An old patient with rash on his trunk. The doctors didn’t know what it was. A quick look after exposing the back confirmed it’s shingles. But he wasn’t even registered as a patient in the clinic! They just wanted me to have a look. It’s interesting. It’s nice. But it took up time. Again.
The nurse peeped in and said a few patients had passed away…
The computer logged me in and logged me out.
The printer refused to cooperate. I strongly believe it is possessed and hates me.
The junior specialist assigned to the clinic didn’t turn up.
Most of the doctors assigned to the clinic were inexperienced.
My research students didn’t turn up at the clinic.
The clinic was packed. It’s always packed these days. One consultation room meant for one patient, a carer and one doctor now sits at least nine – three doctors, three patients, three carers and an occasional 2-3 medical students. Privacy is a luxury. P & C is a myth.
My phone rang several times. Referrals from the wards. I don’t have time to see them. The 3G signal was so bad in the clinic I can’t download images sent by referring doctors.
The emails kept coming in – all urgent. All needing attention stat. I had a lunch meeting to attend to. I had a meeting in KL to attend after that. It’s Friday. I knew I had to crawl through weekend traffic to get home from KL.
Miraculously clinic finished before 1 pm that day. Sometime between 8 am and 1 pm that day, I had that thought. That ‘throw in the towel’ thought. It’s a viable option you know. I didn’t have to do this. My work in the hospital doesn’t add a sen to my income. I could sit in my office and do ‘admin’ work and still earn the same thing.
But I want to do it. But there are days that I am not so sure anymore.
I wish I have a magic wand to just wave over the patients and make everything alright. I didn’t. Instead, last Friday, I felt like a desperate man in a sinking boat frantically bailing out water with a small leaking bucket – with water pouring in faster than I could get them out.
As I walked out of the clinic that day, I didn’t feel relieved. I felt tired, exhausted and defeated. I also realized I did not attend to the counselor who was sick. I didn’t even know when he left the clinic. I hope he would forgive me.
I’m not looking forward to next Friday.