I remembered a friend who once told me how he wished he could get my illness. And my reply was “Why?!” So that I can have a stroll and shop in the malls was his reply. Oh I see. Isn’t it gladdening that someone wants to exchange places with you when you are sick? Wow! That’s sweet! But instead of being grateful, I replied “Why would I give you this? This was given to me!” I had an odd reaction. I don’t even know why I reacted that way. I even owned it.
“Will my life could get any better?” I somehow feel like my life stopped when I was 21 years old or when the day, August 7th 2013, came into my life. I feel like my life stopped the day my AVM (Arteriovenous Malformation) rupture. I feel like my life is on a loooong pause todate.
It was August 7th year 2013 when this happened. I was diagnosed with a rare sickness called AVM or Arteriovenous Malformation. In Medicine, it is described as small, narrow, and tangled veins in human brain or in other parts of the body. A person can have AVM in his face, hands, feet, lungs, stomach, and spinal cord but the most common is AVM of the brain. They say that this is a congenital condition - meaning it dates from birth. But they say that this is not hereditary. The cause of this sickness is still unknown. It can only be diagnosed accidentally or when the AVM caused a rupture, like what has happened to me.
What happened to me that day gave birth to a new me. I thought that was my last day on the planet. I don’t want to die then. I am not prepared. Is there someone ready for death?
“Just don’t have another bleeding,” my neurologist reminded me. At first, the doctors were trying to treat me by giving medicines instead of surgery. I was prepared to be discharged on the last week of August when I had a re-bleed. The same vein ruptured again! So my doctors and my family decided for me to have the AVM obliterated from my brain even if there was a possibility that I cannot survive the surgery or I would be a ‘living vegetable’ the rest my life.
September 4, 2013 is the day of my operation. I have undergone an open-skull surgery (crainiotomy). The operation almost took 10 hours. It went well. Everything’s fine. I survived. I thought, the operation can restore me faster to my “normal” state. But not yet.
December 14 2013, I had my second major surgery because of a complication when I was twice intubated before. It is called “Tracheal Stenosis.” They removed 4 rings in my trachea that was affected. After being diagnosed with this, I thought to myself that maybe this is the time I’ll die. In my mind, “I didn’t die of AVM. Maybe this time, I will.” But, not yet.
“Intrapontine Hemorrhage Secondary to Arteriovenous Malformation” and “Post-intubation Tracheal Stenosis”- are what my medical abstracts stated. I suffered 2 Major strokes and 2 major surgeries at the age of 21.
February 11, 2015, I have undergone another procedure, Gamma Knife Radiosurgery. This was my stay in the hospital where I really wanted to cry out loud. I wanted to shout, “I don’t want this anymore!” I don’t want to be admitted in the hospital again.
Almost three years have passed, I am still unable to walk independently and I can’t feel I am already going 25 years old. I am growing old. While almost all of my highschool and college batchmates are busy with their jobs and others are now settling down to start having a family, here I am- learning how to walk and to write again. I may be left out from my batchmates.
There are times people told me that this is just a CHALLENGE or a trial to me and to my whole family. Some told me that this is the way of teaching or CORRECTING me. Either of the two, I cannot tell that this is just the one or the other. This is what I can say:
This may be a challenge or may be a test. If it was, I can honestly say that I have failed. For many times, I still chose what’s wrong. My words often hurts. I got bitter and ill-tempered. I even cried when my brother jokingly called me a “Great Cripple.” And I couldn’t remember how many times I said, "I want to die."Some say that there is nothing hard with my condition. Maybe, it is because I was just staying at home - just sitting and waiting. But with how often I have wished to die, you may have atleast a little bit of idea of how I truly feel.
Many times I feel like I have failed the One who gave me this test. But I am still here in this condition. There’s still time to walk this track better. I don’t know where will my sickness take me. I cannot know to how far will it take my being. This is hard! - that’s what I can say. This is hard to accept! - that’s what I am feeling to what have happened to me.
Second, I can also say that this may be the way I am being taught or CORRECTED. A teaching that is not only for me, but also to anyone who reads this. I hope you’ll learn through my experience.
I will give this a big round of applause for it is a success! I felt this teaching or correction to my life more than saying that this is just a trial for me. I believe those two cannot be separated.
Due to being stricken by an illness suddenly, people have given and made their own theories, estimations, or opinions about what happened to me. They say I am bewitched, enchanted, paralyzed, being punished by God, or worst, cursed.
My mother and I had a conversation about my condition one time. My tears suddenly fell from my eyes. I cried. “Mother, I am not crying because I feel sad.” Yes! I feel sad especially when I am already worn-out of boredom. “I am happy in my heart” I added. I may not be like my other batchmates who can eat at restaurants, those younger ones that I know have now already their job, I may not be able to take a walk and shop in the malls like what I always see in facebook posts, nor give a gift to someone I love; but I have gained in my heart something that no one can buy at any stores in the world. This is more than the happiness walking and salary can give. I have joy in my heart that many hiking, trekking, outing, parties, seminars, or conferences cannot give. I have something that cannot be lost, cannot be forgotten, or can’t be stolen. I have gained wisdom in my life that cannot be depleted even if I share it to the rest of the world. I have gained treasure “more precious than silver, more costly than gold, and more beautiful than diamond”
Now, can I say that I am truly cursed? Bedevilled? Misfortuned? Or pitiful? To them who believes I am, I felt BLESSED more than cursed. There may have been times I feel deprived of many things - of simple things, but I was given greater things that a normal life cannot give. I have prayed for a normal ordinary life, “but sorry Loida…you are not entitled to it.” I have been in an extraordinary experience- an extraordinary life. This is what I am entitled with. And to that, I am more blessed than anyone who can walk.
My AVM became the filter in my life that exposes and removes so much of my pride, impatience, and selfishness. Like John Farense stated, “What wonder it is if peevishness and impatience are brought out by disease.”
For more of my story:
Ebook (english): http://www.ssccmanila.com/#!recommended-books/im8v3