Religion Is A Tricky Thing

Religion is a tricky thing. It’s probably one of the most divisive topics known to man. Wars have been fought because of religion. Contrary to what it’s supposed to be. At the core of most religions is love. Yet this is not the end result sometimes.

Let me be clear, I believe in God. I believe in Jesus Christ, his son. I believe in the Holy Spirit. I believe in Mother Mary. I think by those beliefs I fall under the Catholic religion. I was born into this religion. Raised a Catholic. My entire immediate family is Catholic.

However, lately I’ve been having problems with the Catholic Church. I don’t agree with some of their ideas.

At the core of my belief is this

“Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and great commandment. And the second is like unto it. Thou shalt love thy neighbor as thyself. On these two commandments hang all the law and the prophets.” [Matt22:37-40]

I compare everything against this two. If the church tells me one thing, before I blindly follow, I compare it to the above commandments. If it passes both then I can accept it as such. If it doesn’t then I really have to think about it more or discard it altogether.

I read “the post”: of Cecile from her Chuvaness blog. She outlines her reasons on why she stopped going to mass/church. I respect her thoughts. I agree with some, others no but at the end of the day it’s her personal decision and her relationship with God. I will respect it.

I have to admit I haven’t been able to go to church a lot this past year. It’s not because I totally don’t want to. It’s for several reasons actually. A part of it is because I really have difficulty going out sometimes. Given also it’s a Sunday, it’s harder for me to go out, no one to drive for me. So it’s either I catch the mass that’s held nearby so I can “walk” but the problem is that it’s only one mass and it’s at 11 a.m. The thing is, because of my work, my time is reversed. I follow US time and so I’m up at night and asleep most of the daytime. But this is not the main reason and I digress.

One of the main reasons is that I simply am not connecting to the Church as much as I should. Part of it is because of differing beliefs with some matters, part of it is because I’m at a stage wherein I’m having great internal conflict.

At the surface everything is fine but I’m having a crisis of sorts within myself. It’s hard to explain here but my faith in religion is wavering. Take note, I said faith in RELGION. Not faith in God. Religion in my opinion is man made. Sure one can argue that in the case of the Catholic Church it came from God and was built from the foundation that Jesus gave St. Peter. Right now man governs it. Some will say that the leaders of the Church were anointed by God and they are a representation of him here on Earth. But right now I’m having a hard time believing it is so.

When I see how some priests are acting, it doesn’t make me believe that God sent them.

I believe that God loves all men. Religion should not discriminate against sex, race, age, disability, etc. So if you’re gay, a bastard, someone who is a single parent, etc, the church should not ban you from practicing your faith. Sure the Church has beliefs, etc but it should not discriminate. It should not judge.

Faith is very personal to me. If someone is gay, I will not judge him for that. Even if the Church says God is not for it, I will leave it to God and that person. I do not want or do I want to be judged. Live and let live, so to speak.

There’s this video going around, entitled “Why I hate religion, but love Jesus”: It’s been going around Facebook and Cecile also posted it in the same entry. It makes a lot of sense.

When a religion punishes someone through no fault of his own, then I find it hard to believe in that religion. An example of this would be a child going to a Catholic school and being told that his/her parents are sinners because they’re not married by the Catholic Church, then that’s just wrong. It scars the child, it’s judging other people.

My God is a loving God. I believe it to be so because he sent his only son to die for our sins. Sacrificing his son in order to save all of us. All those who believe. He didn’t say, save only those who believe but are straight or only those who believe but have no sins. God wanted to save all those who believed.

I would rather live my life based on the two most important commandments of God. Rather than go to church for an hour each week and forget the commandments once I step out. Ideally it should be both.

I want to go back to Church regularly but I need to find my faith again in it first. I need to know that when I go there I agree wholeheartedly on what it stands for.

The Year That Was, The Year Yet To Come

I want to start this letter by first wishing all a belated Merry Christmas and a Happy New Year.

2011 was a roller-coaster ride of sorts. There were some bad moments but definitely a lot of good moments. In some aspects I’d even say this was the best year yet.

The highlight of 2011 was the wedding of my brother to his long-time girlfriend and now wife Imee. Their wedding was held last April. It was also my first time to be a best man.

I was really happy to see my brother finally settle down. His might only be the only wedding my immediate family sees, so I was really glad it turned out well.

One of the best things this past year, just shy of my brother getting married was that I finally got my hands on a Trilogy 100 ventilator. More than the fact that I was finally able to buy it, the journey towards getting it was much better.

Several friends all pitched in to help me get it. A couple ran marathons to help raise funds for it, several donated from their own personal pockets. All-in-all my friends raised about half the amount I needed to buy the new ventilator.

The other half was courtesy of Philips Respironics and their local dealer here. Through the help of their regional marketing manager, I was able to work at a deal with Philips to help them promote the Trilogy 100 locally in exchange for a hefty discount. That was really something else.

I’ve been enjoying the Trilogy 100. It’s allowed me more freedom to go out and live my life.

I’m grateful that this year saw a lot of blessings, in family, work and other aspects of my life.

It’s taken some adjustment to life at home. My brother has left the nest so to speak, leaving just my mom, dad and I. It’s been a little quieter at home, but life has to go on and all things must change.

Work has been ok. I’m grateful for that, although the end of the year brought a little anxiety. I’m technically moving to a new employer. It’s the same job but now I’m working for my employer directly instead of through a third-party company. I wasn’t sure what was going to happen but in the end it looks like things are working out. I’ll be starting on the first working day of 2012. Hopefully this kick-starts the New Year with a bang.

This year has been blessed. I chose to focus on the blessings rather than the challenges. I’m grateful for the family, friends, colleagues, clients I’ve spent the past year with. All of which have touched and changed my life in one way or another.

For the coming year, I pray for blessings. Specifically for stability at work, better health not just for myself but also especially for my family and those who are close and dear to me.

There are all these talks that 2012 is the year that the world will end. I really don’t know. Only God knows when the world will end. Sometimes it seems that it’s coming true. A lot of disasters have come, floods, earthquakes, wars, etc. It’s quite scary. However I choose to believe in God. I choose to hope that good things have yet to come.

These disasters and unfortunate events should only remind us to do better. For things that are in our control we should strive to do the best we can and trust that everything will work out in the end. For those things that are not, we just pray and trust that God is looking out for us.

I wish you all the best. I wish you health, wealth, love, happiness and peace. I hope that the coming year blesses you as much as this year has blessed me, if not more.

In the coming year, I hope to spend more time with my family, exercise more, eat healthier. I want to be able to work smarter not just harder or longer. I want to rekindle old relationships that have been set aside due to time or other circumstances. I want to meet new people and build new relationships. I want to experience new things. Most of all I want to do things that matter, not just to myself but the community too. I want to make a bigger difference in people’s lives. Oh if possible, maybe improve my love life.

Happy New Year to all! Be safe as you celebrate the coming year.
God Bless!

On My 34th Birthday

It’s been 4 years since the proverbial end of the line. When I was first diagnosed, doctors told me I probably would not see my 30th birthday. I just turned 34 today. It’s been 4 years worth of extras so to speak.

My parents, brother and his wife threw me a birthday party. It was different though this year. It turned out to be a children’s party. Most of my friends now have children of their own. I could not have a party and not expect them to bring their kids. So instead of having a grown-up party we decide to just have one that the kids will enjoy too. Turns out, I enjoyed it more.

It was nice to see the kids of my friends. Some of them are my God children. In our country, it’s customary to have several God parents per child. So no, the children are not in danger of getting stuck with me if something happens to their parents.

Time has certainly flown by. Even if I don’t have a family of my own, my friends and their children have become a second family to me.

I did not receive anything grand this birthday. No outrageous present. When I was a kid that was the one thing I looked forward to, a wonderful toy from either my parents or my grand parents. Yet in all my years of celebrating birthdays, this year was a joy unlike no other.

I realized that despite my challenges, my everyday trials, the reality of being in my situation, I am quite lucky. I have a wonderful family that supports me and is always there for me. I have friends who care enough to spend their Sunday with me. I am quite blessed.

I thank God for blessing me with all that I have. I thank him for my parents, Vic and Cyn, who never gave up on me, even when people will understand if they did. I thank him for my brother and my new sister-in-law who also showed me so much love. I thank God for my friends, some of which are like brothers and sisters to me. I thank God for giving my friends children, who I know bring them joy but it also brings me great joy to see them with my friends. I thank God for all the things he has blessed me, material or otherwise. I thank God for the other people who make my life possible, my aides, helpers, drivers, etc. In 34 years God has never failed to bless my life.

Thank you for a wonderful 34 years. Thank you for all the people who have walked into my life. I am blessed because I have them in my life. My only wish is that God gives me more years to come so I can spend it with the people I love.

Think Before You Tweet

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.*

Happy New Year!

As the the year comes to close, I wish everyone a Happy New Year! 2005 has been kind to me and I hope it was the same for you. I look forward to 2006 and pray that it will be a great year if not greater than 2005. Each new year brings us hope and opportunity that better things will be in the horizon. May God bless us all. Here’s looking towards a fantastic 2006!

Fight Pompe!

The Year That Was

2005 is coming to a close and it’s that time of the year to reflect on the the year that was and examine the blessings that have been given.

To be honest, at the onset of 2005 I felt sad and wasn’t really looking forward to it. Why? Well, December 2004 I found out that a project that we were working on will be cut short. For what reasons I don’t want to speculate anymore. It was sad because I really enjoyed working with the people on the team. People I really respect. Apart from that I was making good money with the project which afforded me a chance to own one of my dream gadgets, a Powerbook. So 2004 didn’t close all that well with the loss of that job.

In January 2005, I was at a assembly. My friend gave a talk and I remember her saying that while 2004 was great, 2005 promises to be even greater. With her words in my mind, I started to be hopefull that 2005 would be great. You know what? It did turn out great. Not exactly what I had in mind but fantastic nonetheless. Let me recap the highlights of 2005.

1. *Various speaking engagements* – I was fortunate enough to start out the year with some speaking engagements. I’ve always made it a point to accept speaking engagements because it provides me a venue to share my message across. I’m also flattered that people actually want to listen to what I have to say. In January I had the chance to talk at a major event called “Pinoy Unleashed” produced by Unleash International. This was an event to launch a programe that they have. It was also aimed to inspire people to maximize their potentials and become better persons. Believe it or not I was in the company of very important and successful people such as Tony Tan Caktiong, founder and chairman of Jollibee, the number 1 fast food chain in the Philippines. and many other distinguished men and women who spoke at the event.

In relation to that I was also invited to talk at Jollibee’s annual convention on February. I was happy to have gotten a chance to be part of that event. I saw why Jollibee is considered as one of the best company’s to work for in the Philippines.

For a second year in a row I was also a speaker at the LEAP Congress. An event put together by Innerwheel Club of Makati North. The goal of the event is to inspire the youth to become leaders.

Apart from this three major events I was also fortunate enough to speak for CLPs of Singles For Christ. This has been something I’ve been doing regularly for the past few years. A way of serving God and giving back to the community.

2. *Sparkplug Studios* – In June 2005, we transitioned to a new company that I, together with my brother and some other friends put up. It’s a design company that focuses on Web and Graphic design. We also plan to focus on User Experience. I’m very happy with the birth of our new company, especially because it gives me an opportunity to work with my brother and becoming an entrepreneur.

3. *Distinguished Alumni Award* – My alma matter, DLSU-College of Saint Benilde bestowed upon me the honor of being the first ever recipient of the Distinguished Alumni Award. This came as a total surprise to me. There are a lot of other qualified candidates for this award but somehow they chose to give it to me. I am forever indebted to my school for provideing me an education and for accommodating my special circumstance. I am what I am today in part because of my school.

4. *Writing for MPH* – This year I fulfilled one of my dreams of writing on a much more regular basis. I’d like to thank the people behind MPH Magazine, a local mobile tech magazine for providing me the opportunity to write for them. It has truly been a wonderful experience.

5. *Myozyme* – The biggest blessing this year came at the very end. A photo finish of sorts. On Dec. 20, 2005 I was given my first infusion of Myozyme. The enzyme replacement therapy being developed by Genzyme for Pompe patients. This is indeed a blessing. It’s something that I’ve been waiting for 18 years. I’m thankful to the people at Genzyme, the doctors at the UP-NIH for putting this together and giving me a chance at a better life.

Apart from these major events this past year, there have also been other blessings this year. Such as the chance to develop new friendships. I’m thankful for the new people I met at PhilMUG, whom have been so warm and welcoming. The people from DLSU-CSB, Kato, Chong and the rest.. Jeri, Kevin’s assistant, I’m happy to have met you even if it’s just online. I’m also thankful for developing friendships from people I’ve known before but didn’t really have the chance to get to know them well till now. Peopls such as Tiffany, Cricket, Nikki, Jayvee and Kevin. I am also grateful for the continuing friendships that I have. There are too many to mention but you guys know who you are. My life is better with you in it.

I am thankful for my family. Their continuing presense, love and support make my life, the great one that it is. Sure there are many challenges. It’s a difficult life especially dealing with Pompe but my family, friends and colleagues make it a worthwhile life to live.

Most of all I am thankful for God’s continuing love. He has always been there for me and has never left my side. He has given me a lot of gifts. I am blessed.

As 2006 approaches, I am thankful for the year that was. I’m also looking forward to the year that will be. With Myozyme, I am hoping that a better future is in store. I am praying for more opportunities to share my blessings with other people. There’s exciting things in store for 2006.

Remembering Jose

I was lying in bed one night and for some reason I remembered Jose. A fellow Pompe patient, I was privileged enough to get to know Jose through the GSDnet mailing list. He’s one of the good fellow’s who’s always generous with his advice and opinion.

On Nov 6th 2002, Jose passed away. From what I know, his vent broke down and no one was with him during that time. He eventually suffocated. Tragic…

Although I haven’t met Jose in person, I still felt like I lost a friend. There’s a certain kinship I guess with fellow Pompe patients. Jose shared his life with fellow Pompe patients and so in a sense I felt like I knew him well.

Jose’s death shook me a lot. It could easily happen to me. It’s such a tragedy to lose your life in that way. It doesn’t make sense at all…

I’m lucky that I have a lot of people around me. Still the fear is there. Sometimes I lie in bed and find myself thinking that what if my machine failed and no one is there… I soon find my heart racing because of the thought.

I guess this is something I together with other Pompe patients have to live with. While I have this fear, I try not to let it take over my life. I take the precautions in order to prevent it but at the same time I try to live my life as normal as I can.

Jose, if you’re reading this. I’m thinking of you buddy… I hope you’re happy up there and Pompe free. I’ll see you up there but hopefully not for a long time… I still have a fight down here and I don’t intend to give up anytime soon.

Fight Pompe!

Merry Christmas!

It’s Christmas time once again. I just want to wish all a merry, merry Christmas. Let’s not forget the true meaning of this holiday. It’s the day that our saviour Jesus Christ was born. A truly wonderful gift that God has bestowed on us. Let us remember Christ’s birth as we celebrate this holiday.

More than the gifts, celebrations and other things.. Let us remember that the true essence of this holiday is love. Celebrating the love that God has for us. Let’s also celebrate our love for each other.

I hope that this year has been great for you. I hope that you have been blessed as much as I and my family have, if not more.

From my family to yours, a truly merry CHRISTmas!

What Would You Tell Other Pompe Patients?

In a recent phone conversation with new friends of mine, I was asked the question “What would you tell other pompe patients?”. The question mostly pertained to newly diagnosed patients but I think it also applies to all patients. Well here’s what I would tell them.

The first step to solving a problem is acknowledging the problem. In this case it’s Pompe. A patient must really learn to accept his diagnosis. There’s no sense running away from it. It’s not a problem we can run away from. The sooner we accept it, the sooner we can deal with it.

The next step would be education. Try and find out as much as you can about Pompe. Browse the web sites, seek help from professionals, talk to other patients and your family about it. The more you know about it, the better. There are things you can do to try and slow the progression until the time comes that you can receive ERT.

Now comes the time to channel your energies to the positive aspects of your life. Never under estimate the power of positive thinking. A positive attitude is key to having a better life.

Don’t let Pompe define your life. It’s not who you are. It’s just a part of your life. It doesn’t define your being.

Use this situation as a chance to do something great. There are lessons to be learned in dealing with Pompe. Use those lessons to help improve your life. Use it as a chance to bring your family and friends closer together. The biggest lesson Pompe taught me is to value the simple things in life. Often times, the simple things are the important ones. Such as spending time with family, appreciating the world around you, being thankful for what you have, etc..

Focus on the things that you have and not on the things that you’ve lost. There’s no sense in dwelling on the things you’ve lost. Aa the saying goes, “Don’t cry over spilt milk”.

Finally, whatever the end holds for us is not as important as the journey we took to get there. In the end I might lose to the fight against pompe, or I might win. I honestly can’t say until I reach the end. What I do know is that the journey is more importnant than the destination. As long as I gave it my all, lived my life to the fullest, I can’t lose. Others can do this as well.

So that’s my message. What do you think?

Fight Pompe!

Looking Forward

It’s been several days since I got out of the hospital for my first infusion. I’ve had time to really think about what has happened. I really didn’t want to think about it till the infusion actually pushed through. Now that it has, I’ve reflected on the implications that it will have on my life.

I really don’t know to what extent Myozyme will have an effect on me. All I can do is hope for the best and give it my all and we’ll see how it turns out.

I fully understand that Myozyme won’t be the answer all by itself. I need to put a lot of work along with it. Work such as physical therapy, proper diet, adequate rest, etc.. All of these together will hopefully give me the best result that is possible. Of course above all that is the faith that God is with me and that if he wills it, I will get better.

Now therein lies the problem. All of those I mentioned above will require a shift in how I live me life. Prior to this I basically just worked and health really took a back seat. I needed to work because that’s the way it is here where I live. Life is hard and everyone needs to work to get by. While my family supports me, I can’t just rely on them. I need to do my part.

I’m starting to think of ways on how I can devote my time more to getting better. I’m thinking of trying to devote the coming year 2006, to putting more emphasis on health rather than work. This means I might have to take a break from work.

It’s good that I partly own the business I have together with my partners but then again it’s not a big business and I’m not sure if I can afford to give up my job. Since getting better has its expenses.

I don’t want to be a “burden” to my family and have them shoulder everything. They’ve really sacrificed enough.

So….. what to do, what to do?!? I’m still in limbo. I need to find a solution to this. Any ideas?!? If you do, please let me know. What I’m sure of, is that health has to come first. I really need to put effort into this or Myozyme will just be wasted on me. I don’t want that to happen. Not when a lot of people have put in good effort to bring Myozyme to reality.

I hope 2006 will be a good one. If 2005 is any indication, the next year promises to be great. I’m really looking forward to seeing how it turns out.

Fight Pompe!