Yesterday, I had my first “heated” discussion over Twitter. Well, ok heated might be overstating it a bit. Let’s just say lively.
Recently, upon the suggestion of a friend I started to follow DJ Mo Twister over at Twitter. My friend said that his tweets were entertaining. Fine ok, I followed.
I must admit some of his tweets were really entertaining. Mostly those about his travels in Europe.
However there were some tweets exchanged between him and some people that I have to say weren’t nice. It must have been the heat yesterday but after seeing Mo’s reply to someone I kinda got irked and decided to join in the conversation. Let me chronicle it below.
It started with this tweet.
did kris aquino really say she wanted to STAB people who talked smack about Noy? thats awesome. cuz thats my solution for everything too.
someone with the twitter name youlovealfer replied to Mo which in turn Mo replied to him with this.
RT
youlovealfer:djmotwister —- i understand her coz thats her brother.—ARE YOU EFFING SERIOUS? stabbing humans, filipinos?
Now, like I stated above, it must have been the heat or it was just a sucky day for me coz normally I won’t even bother but I guess it just irked me. So I sent a tweet over to Mo saying.
@djmotwister dude, it may be bad choice of words but that’s what they are. don’t tell me you’ve never said “i’d kill that guy”. c’mon.
What followed was what would turn out to be a lively exchange between Mo and I. Here’s the rest of the tweet exchange.
@chairmanone youre fucking insane thinking thats justified. wow. im scared for monday cuz of people like you.
@djmotwister i never said it was justified. all i’m saying is you’re making such a big deal out of nothing. it’s kris aquino for pete’s sake
@djmotwister you really taking kris aquino seriously?
@chairmanone its the presidency my friend…im not making a big deal, look at my tweet. i was being sarcastic. “its awesome”. 6 yrs bud.
@djmotwister so wait, what’s the presidency got to do with what she said? is she the one running?
@djmotwister so ok, you’re saying you take the presidential elections seriosuly. let’s have a discussion. who you voting for and why?
@chairmanone oh shit. youre stupid. what does it have to do with the presidency? are u high? the biased mind is so disturbing
@djmotwister dude, now with comments like that makes you “stupid” more than me. calling other people stupid when you don’t even know them.
@djmotwister coz if what kris says is a barometer of who noynoy is, then i pity your siblings if you have any. for all the crap you say.
First of all at the time Mo tweeted about Kris Aquino’s statement he didn’t even know it was true. So given that he’s a celebrity and all with a lot of followers, why post something that might give people the wrong impression about another person. Is it because she’s Kris Aquino? Because she’s the host of a competing show? I dunno. But that’s not the thing that irked me.
What irked me was how he replied to “youlovealfer”. The guy/girl was making a simple comment which in my opinion has some merit. I mean if it were me and you talk smack about my family I’d kick your ass (if I could).
You have to put things into context. A lot of people have been saying bad things about Noynoy and the Aquino family in general. It’s been a long campaign season and so even if what Kris said was true, people will know that it’s a figure of speech. Something not to be taken literally. The only person Kris would probably stab is James Yap in the even she catches here cheating on him. Ok, ok I’m kidding. Even if she does she probably won’t. For all of Kris’ faults I don’t take her as someone who’d actually stab a person.
So that being said, when I replied to Mo, I only meant to imply that he shouldn’t take things literally. Read between the lines and take everything into context. First of all it might not be true, second he’s an educated person he should know it was probably a figure of speech.
What pisses me off though is how Mo would reply to people. I made a simple comment. No need to be crass about it and start cursing people. Especially someone you don’t know. Even going as far as saying “he’s scared on Monday because of people like me”. He doesn’t even know me, so how can he be scared of me? I never even implied that it’s justified to stab someone when he talks smack about your siblings. Again, it’s probably a figure of speech!
Also, why is he taking what Kris Aquino says seriously? It’s Kris Aquino for pete’s sake. We all know that a character she is. I’m not saying Kris is bad but sometimes she also needs to filter what she says. But Kris is Kris and that’s another topic altogether.
Mo, goes on to say “it’s the presidency my friend”. Huh? When did it become about the presidency? Oh.. because Kris is the sister of Noynoy. Hence what Kris says is a reflection of Noynoy’s character. Great logic! If people’s character were based on the things that their siblings say or their siblings for that matter, I hope that Mo is an only child. I’ll feel bad for his siblings. Imagine being judged because of what goes out of Mo’s mouth.
Replying rudely to people and calling them “stupid” doesn’t make you superior to other people. In fact you’re the one that’s stupid for doing that. Especially if you do it over Twitter. I mean when talking/texting/tweeting to people, especially those you don’t know you should be mindful about what you say. I’m pretty sure Mo’s a smart person. He wouldn’t be where he is if he was dumb. So why talk like that to people? Can’t you carry a decent conversation with strangers? There are ways to get your point across without calling them “stupid”, “idiot” or any other derogatory names for that matter. Case in point, I just had a lively debate with a friend over Facebook chat prior to the incident with Mo. We were trying to convince each other to vote for the other’s candidate. It went pretty well. No name calling was necessary. All’s well that ends well. A lively exchange of opinions can be carried out without the need for calling another person names. It’s not rocket science. It’s just plainly being decent.
Now, I wrote about this incident not to malign Mo. Let’s say it’s my way of telling him and people in general to think before you tweet. The Twitterverse is a whole different space than what goes on in normal conversation between friends. You can’t express what you want to say clearly in 140 characters. So there’s always a chance that people might not interpret what you want to say correctly. So all the more you need to be careful with what you say and how you say it.
Hey, for all I know Mo and I might even eventually end up as friends. I’m not judging him as a whole based on this. I’m just saying that sometimes he can be an ass when he tweets. It doesn’t make him a bad person. Just someone who needs to think more before tweeting.
Disclaimer: At this point in time I am inclined to vote for Noy, Mar and the LP slate but that’s not because I’m biased. Nor is it because I follow them blindly because Noy is the son of Ninoy and Cory. It’s because based on what I see and have read, theirs is the platform that addresses a lot of the issues I care about. Mainly, health care and education. Also it’s because of all the parties, they fielded candidates not because they’re winnable but because they’re actually qualified. Are they the only ones qualified? No. But at least they can actually perform the duties of the post they’re running for.
The election is less than 10 days away and the jockeying for votes is reaching a high. Campaign jingles blaring during the day, countless ads being aired on tv and radio. Even my current favorite past time of browsing Facebook and Twitter is being invaded by political messages. So I thought I’d just go ahead and share my thoughts on the upcoming Presidential elections.
First and foremost what I sincerely wish for is a clean and honest election. Whether or not that will happen remains to be seen. So if Erap wins but it’s clearly shown that it’s the people’s choice and he’s the clear winner then so be it. We get the leaders we deserve but at least it was the true choice of the people. What I really don’t want is a President that cheated his way to the top.
That being said, here are my thoughts on the candidates for President.
Noynoy Aquino – He’s currently the person I’m most likely to vote for. Here’s why. There are two issues that are very close to my heart, health care and education. I truly believe that these two need to be addressed in order for the other ills of our society to be fixed. A healthy nation is a strong nation. An educated nation is a prosperous nation.
Aquino’s health care plan promises universal health care for Filipinos within 3 years and of the national budget to be allocated to health care.
The Aquino education platform also calls on focus on science and math which I believe are essentials for us to prosper as a nation. These subjects are the foundation of knowledge jobs such as medicine, engineering. I don’t want the Philippines to be just a nation of call centers and factories but rather a nation that is known for research, development and products that were born here and not just manufactured here. These are subjects that need to be learned and excelled at in order to do these.
A lot has been said about Noynoy’s qualification. That’s what they also said about Barack Obama. Some times it’s not about the length of service or how many laws you’ve been able to craft. I think this time we just need a President who can inspire hope in us. A President who can help us get our act together and push us forward.
Noynoy is just the son of Cory and Ninoy and nothing more. That’s what a lot of people say. Well I can also say that the Apple does not fall far away from the tree. If he inherited a fraction of his parent’s traits that would be better than most people running now.
But what reassures me about my choice is that you can tell a lot about the candidate by the team he put together. Among all of the candidates Noynoy has arguably the best people running with him. From Mar Roxas to his senate slate. I believe that that these are people I can stomach as public servants.
Gibo Teodoro – He would have been neck and neck with Noynoy for my vote if not for several things. First, he’s just too associated with GMA. I hate GMA with a passion.
Also, if his choice of VP is any indication of his leadership then I really don’t want him as my President. Of all 80 million Filipinos why would you choose Edu Manzano? Now don’t even get me started with his choice of Senators, Bong and Lito Lapid? Are you kidding me?
For a candidate who’s supporters are espousing that Gibo is the choice of the thinking man he didn’t put a lot of thought in his team.
A lot of people keep lambasting Noynoy about Hacienda Luisita, isn’t Gibo a Cojuangco too?
Manny Villar – C5, allegations of bribery and other unethical conduct as Senate President, Loren Legarda are just all the reasons I need not to vote for him.
Dick Gordon – He would also have been a strong candidate for my vote. He has both executive and legislative experience and has been successful in transitioning Subic from a US base to what it is during his time.
However, he just comes across as someone that’s temperamental and egotistical. A President needs to be first and foremost humble because he is in fact the number one servant of the people. Sadly humility is not Dick’s strong suit.
Bro. Eddie Villanueva – My biggest problem with him is that I am not a believer of having a preacher as a President. I believe that there should be a separation of church and state and I am afraid that if he’s President he might push his religious biases onto the people.
Also by insisting that he is God’s chosen one, every time he loses he is doing God a disservice. He’s making a case for people to think God doesn’t exist. If God indeed chose him, he would have been President years ago.
Please don’t use God as a campaign tool. If God wants you to be President you don’t need to tell people that, God will do that for you.
Nicky Perlas – He’s a good man. I believe this wholeheartedly and if I was President I would not mind having him in my cabinet. I wish he started slightly lower first and worked his way up. Maybe Mayor, Governor or something.
JC Delos Reyes – Like Nicky I believe he’s a good person. Try a lower position first and work your way up. He’s still young and he has a lot of time to ascend to higher office.
Jamby Madrigal – no comment.
Those comments being said there are still less than 10 days away from the elections, until my vote is cast it’s not certain. I can change my mind. If anyone can convince me that their candidate will be able to address the issues that I care about better then please by all means, convince me. If you do, I’d be happy to change my vote.
An alleged psychological report on presidential candidate Noy Noy Aquion dating back to 1979 has surfaced. According to this report former which NPC President Guido Delgado circulated, a then 19 year old Aquino was said to be “suffering from depression and melancholia” partly due to his father’s incarceration during the regime of Ferdinand Marcos.
This report was supposedly signed by Jaime Bulatao, a Jesuit Priest and was dated August 9, 1979. Father Bulatao through a letter has since denied the report.
However, granting this report is true, what’s wrong with being depressed? Isn’t depression a natural human emotion? I will openly admit that I’ve been depressed several times over the course of my life. Especially because of the trials that I’ve been faced. Is there something wrong with me? Does this mean I am a lesser person than the next because I’ve been depressed? My answer would be no. There’s nothing wrong with being depressed.
At the time that the report was supposedly made Noy Noy was a young man who has gone through a tremendous amount of trials such as the incarceration of his father and the other attacks thrown against his family by their enemies. That’s more than a lot of people could undergo and handle given their youth.
If he became depressed, that would certainly be understandable. What’s important is that he got over it and since then has made something out of his life.
Being depressed is not bad. It’s our way of coping through problems. What’s important is the ability to get over the depression and press forward. As the saying goes, “it’s not how many times you fall down, it’s how many times you get up”.
That’s the same with depression. We’ll get depressed as we face trials and that’s fine. We should just find a way to get out of it in a timely manner.
If the worse trait of Noy Noy is that he gets depressed from time to time then I’m willing to live with that. That doesn’t mean he’s a bad leader or a bad person, it only means he’s human.
As the elections draw near, my choice of who to vote for becomes clearer and clearer. I am seeing and sensing desperation from some candidates and this only puts them in a bad light.
A friendly advice to supporters of candidates don’t use tactics like this in order to sway others to your side, it only makes people think less of you and your candidate. If you want to convince me to vote for your candidate show me what they can do, their good qualities. Don’t show me the negative traits of the other candidates. That only makes you look petty.
I woke up today with some really sad news. I got a text message saying that Basti passed away. Basti is the son of Joey and Sheila Valiente. He also had Pompe disease.
I met Joey and Sheila years back. They got a hold of my name and contact details because I was listed as the contact person of the International Pompe Association (IPA) here in the Philippines. They had just found out that their son (then less than a year old) had Pompe disease. Like most parents faced with this life changing news, they were frantic in finding a way to help their son.
I found myself at our dinner table talking to them. They flew all the way to Manila from Cagayan De Oro in hopes of finding help for Basti.
Luckily that was also the time that clinical trials for infantile form of Pompe disease was being done. I know several people involved with this program so we talked about trying to get Basti in that program as well as see specialists that might be able to help him.
Long story short, Joey, Sheila and Basti found their way to the United States and eventually was put on a program that allowed Basti to receive Myozyme, the first Enzyme Replacement Therapy for Pompe disease. This allowed Basti to live several years more.
An infant diagnosed with Pompe disease usually has a mortality rate of up to around 1 to 2 years of age. With ERT this goes up dramatically depending on how soon the infant receives it.
Basti received ERT and as a result his life was extended a few more years. In fact he celebrated his 8th birthday last February.
I was told that Basti died peacefully in his sleep. He wasn’t sick prior to that. He just went to sleep and didn’t wake up. Maybe it was just God calling him home.
Basti lived a happy life despite his severe disability. He had parents who loved him and who did all that they could to ensure that.
We don’t know why these things happen. Why Basti was given a few more years only to be taken away suddenly. I’m sure God has his reasons. We only need to trust in that.
I pray for Basti’s soul. I’m sure he’s up in heaven enjoying himself there. Most of all I pray for Basti’s family, especially Joey and Sheila. Their is a loss that will be hard to get over. After years of fighting, it’s hard to suddenly wake up and not have Basti there. I pray that they are able to get through this tough time.
I didn’t get a chance to meet Basti personally because I only had the chance to meet with Joey and Sheila prior to their going to the United States. I have been always updated about Basti and his condition so I do feel like I know him well. He was also the first Pompe patient that I was able to help in my small way and he will forever be in my heart.
Rest in peace Basti.
The Philippine Pediatric Society invited me to speak during their 47th Annual Convention. It was the last day of the convention and they asked me to talk about hope. Being in my situation, I’ve had the unique perspective of going through a lot of tough times. The thing that got me through it all and still does is hope. Well apart from my faith in God.
They showed a short video of me that was made several years back and after wards I was introduced on stage to give a short speech/talk. Below is the text of my speech. I wanted to share it with you guys.
———- start text of speech ————-
Good morning ladies and gentlemen. I am honored to be here in front of you. Pediatricians hold a very special place in my heart. So much so that I was once asked “If I could choose the profession of my future wife, what would it be?” My answer was “a doctor, pediatrician to be specific”. I just feel that pediatricians are special breed of doctors. It’s not enough that you’re a good doctor, a pediatrician needs to be much more patient and compassionate because their patients are children. In fact right now, the doctor that administers my enzyme replacement therapy is a pediatrician. Well, it’s probably because I still act like a child sometimes.
Today I’d like to start of my brief talk or sharing if you will with a quote about hope. It goes…
The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both lead to the same destination. ~Marion Zimmer Bradley
The author is an American novelist. This quote leads me to a conversation I had the other day with a father of a child with C.H.A.R.G.E syndrome. He narrated to me that when his child was born, barely a month old, he had a friend who also happened to be a doctor, tell him to give up on their child. It would be such a waste of economic resources as well as a huge burden to their family. There’s little chance that the child will have any sort of meaningful life ahead. The father refused to do that. With hope in his heart and with strength of conviction, he and the family pushed on. Today, his daughter is doing well. A lot of her problems have had remedies and she’s improving slowly but surely.
Now even if the outcome was different and the child did not improve or worse died, it would have been easier to go through that journey with hope in your heart than despair weighing you down. This is not to say that we all should have blind faith and believe that everything will be ok. But we should always keep hope in our heart.
My life is a story filled with hope. As you’ve seen in the video that was just played, I am receiving Enzyme Replacement Therapy, something that was not possible just a decade or more ago. Yet here I am right now, benefiting from it.
When I was young and first diagnosed with Pompe disease, we were told that I might not live past the age of 30. There was very little work being done about Pompe and that I may not see a treatment or cure in my lifetime. Well, I’m 32 now and I think it’s safe to assume that I’m still alive.
My parents never lost hope. That’s also what they instilled in me. While at that time we didn’t know how things would turn out, my parents always taught me to believe. Do what you can now, try your best but keep hope in your heart that just around the corner something good is coming.
One of the first doctors that took care of me, said while we don’t know whether or not we’ll see a treatment or cure in your lifetime, we should prepare for that in case it happens. He asked me to focus on my diet, keeping healthy and staying strong.
True enough, a few years shy of my 30th birthday I received my first infusion of Myozyme. The first Enzyme Replacment Therapy for Pompe disease. This has improved my life considerably allowing me to surpass the age that I was told I would not exceed.
Hope is what got me through those years. I’ll be honest there were times that I was about to give in to despair but somehow, hope found a way. Hope is motivation. Hope allows us to win our small battles everyday.
I am here today as an example of what hope together with the compassion, determination and support from doctors like you can become. I’m using my life in order to represent patients with rare disorders. To convey a message to the world that we deserve a right to life as well, that we shouldn’t be written off just because our situation is not as ideal as one would like.
Modern science has improved leaps and bounds. We now have access to technologies that were once but dreams. The chances for improving lives of patients are better than ever. However sometimes these medicines or treatment will take time, hope is what will get people through in between.
When families first realize that their child is sick, the first thing they do is bring the child to a doctor. You are their lifeline. They look to you for guidance. They look to you for hope. While I understand that there will be situations wherein there will be little that can be done, hope should always remain. For we can’t know for certain what the future will bring. I guess what I’m trying to say is that it’s just not about treating the physical symptoms it’s also about nurturing the soul.
Christopher Reeves more popularly known as superman, one of the people that I admired in this world said, “Once you choose hope, anything’s possible”. Anything is truly possible with hope. The strength of the human spirit knows no bounds.
As I continue to live my life with this disease, uncertain of what the future brings, I have hope in my heart that as long as I continue to do the best that I can, things will be fine. In the case that things don’t life is still certainly infinitely better with hope in my heart than despair weighing me down. Also when a person is hopeful it radiates and makes others around him hopeful as well.
In life all that we can really ask of ourselves and of others is to do the best that we can with what we have and leave the rest to God. Whatever will happen will happen.
As I close this talk of mine, I would like to extend my sincerest gratitude to the doctors that I’ve had the pleasure of working with all these years. Dra. Sylvia Estrada for the wonderful care that she and her team has given me. Dra Padilla, Dra. Silao and Dra. Dela Paz for their tireless efforts in helping the Philippine Society for Orphan Disorders as well as looking after patients with rare diseases. The wonderful team at the NIH who do so much for patients like me.
I’d also like to thank the efforts of the people who work for companies like Genzyme who despite the small numbers of patients with rare disorders make a huge effort in coming up with treatments to keep us alive.
The compassion and understanding of these people as well as tireless efforts in ensuring that patients like me have a future will forever be remembered. My life is possible through them.
I would like to leave you with these words from an unknown author. When the world says, “Give up,” Hope whispers, “Try it one more time.”
Oh, if there are any young single pediatricians out there… my number is….
Thank you very much and have a great day ahead of you
Juan Magdaraog
Patient Advocate – Philippine Society for Orphan Disorders
http://www.psod.org.ph
Has it really been 463 days since my last entry? Yikes! Time has surely gone by. Well I’m back (I’ve said that before). Hopefully I’ll follow through this time. I’ll be posting more here.
A redesign of my site is also underway. Please watch out for that. I’m thinking of porting it to WordPress. We’ll see.
