My name is Michael Centeno, I came from the Philippines and have been here in Canada since October of 2007. I am a father of two - my son Mikhail is 24 and my daughter Maia Mikaela just turned six years old. I first came across the word “ALS” during the ice bucket challenge phenomenon, but honestly I didn’t pay much attention to it until sometime around summer of 2018 when I started googling about the weakness in my left hand. I started researching about arthritis, carpal tunnel etc. until it becomes serious researching about MS, ALS and the likes. So I became a little bit familiar with those diseases, but totally dismissed the idea that I might actually have one of them.
Growing up in Philippines I had never heard of someone affected by ALS, which gave me confidence I didn’t have those kind of illness. Even when I brought it up with my family physician here in Calgary, he said “no it’s very rare and you’re Asian, which would be even rarer.” That gave me some relief Until January 15, 2020 came, and the neurologist told me the diagnosis. It felt like the world came crushing down on me, no words came out just tears as I hugged my wife and my daughter.
The drive back home seems like it took forever and everything was blurry. Still hoping that what just happened is just a bad dream and I would be waking up soon. The first thing I did when we got home was to pray in our little altar. I didn’t ask God why, instead I said thank you for giving me this trial, just please make it easier for me and my family. I truly believe that those who were given some difficulty in life will reap a reward from God. So many sleepless nights and overwhelming emotions followed but after a week I came to the realization that my family needs me especially my daughter. That I need to make the most of it while I still can and still have strength in me. I excitedly planned and booked multiple family trips but then covid came and halted everything. It’s a huge setback but it’s still an opportunity to spend more time with my family.
I’m enjoying lots of fun time with my daughter by driving her to school until one of my doctors refrain me from doing so. I was crushed and heartbroken even if I beg him to give me couple of months more until my daughter finish the school year, and told him I wouldn’t compromise her safety if I knew I could no longer do it safely. But it is what it is, I need to follow and not to complicate things further. I’m also very fortunate to be part of the clinical trial medication, oral Edaravone. I am the 177th participants out of the 180.
I am so glad that a lot of people are very supportive with people afflicted with ALS and their families. The ALS clinic, the home care OT, most especially the ALS Society of Alberta for their all-out support from the very start. They’re beside me as my disease progresses. From the very small pieces of equipment to complicated and expensive ones. We even brought some with us on our trip back to the Philippines and made it easier. I got to attend the Calgary Flames game through the generosity of Mikael and Frida Backlund, we really had a great time my daughter even yelling “best night ever” while munching on nachos and cheering for the Flames. It’s really heartwarming to know that a lot of people outside of family and circle of friends care.
Life’s journey is not always a bed of roses especially if someone is ill in the family. Mine is no different but with my wife Mia always on my side everything seems to be easy. Her caring and sacrifices go above and beyond, setting up a makeshift bedroom on the main floor so I don’t need to go upstairs and trading a nice comfy bed to an air mattress just to be by my side every night. I would say that every Filipino couple’s dream is to make a family and have at least one child to care for them when they get older. I’m so lucky to have two, my oldest Mikhail who is old enough, did not hesitate to step in and help. But I couldn’t imagine my daughter Maia that an early age was already obliged and would willingly care for me. In one of our conversations I asked her what she’s want to be when she grows up? And she said “I want to be a doctor someday, I’m actually practicing now to become one by taking care of you”. That melts my heart and brings me to tears.
Sometimes I couldn’t help but ask, why life seems to be so unfair. Nobody deserves to suffer, especially little kids. But it always comes back to the answer that, everything happens for a reason and in God’s perfect timing everything will be alright.