I met Verchie Totanes in college. I knew him as this chill, likeable guy, but we weren’t really very close. What’s funny is that we only started really talking years later on Facebook.
What struck me about Verchie was how tenaciously positive he was even though his condition was so mind-wrackingly uncertain. We were always taught in our different theo, philo and psych classes that happiness is a choice. Verchie, for me, epitomized this big time.
The way he consciously made an effort to keep his sense of humor despite the stuff that he was going through reminded me so much of how my dad was when he was battling with his own illness.
Pretty honored that he agreed to share his story in my blog.
Since college, I lived with a condition called keratoconus in my RIGHT eye. This is an advanced, uncorrectable (not with glasses, contacts or laser) deformity in my cornea that causes blurred vision. I couldn’t read or recognize faces with my affected eye. BUT I was still able to live a normal life- I was even part of the Ateneo varsity shooting team- because of my good LEFT eye.
Despite this, my life was fine. Things were ok with my family, I was a full- time entrepreneur and was making preparations to expand my businesses further.
But then sometime in 2013, my LEFT eye got infected. It’s called acanthamoeba keratitis. In simple words, the micro-organism amoeba infected my eye and damaged the cornea, causing total loss of vision. And severe PAIN.
(Blind left eye + Very Blurred right eye + PAIN = DISASTER)
My condition was not life threatening but it changed my life in so many ways, faster than I could understand or adjust to.
I felt like I lost 80% of my vision. I couldn’t drive anymore and had to ask other people to read for me. I couldn’t recognise people’s faces and could only follow the feet of the person in front of me while walking.
One time, I came home after visiting several doctors looking forward to talking and spending time with my sick dog, Taygrr. But then someone came out and told me that sadly, Taygrr had died while I was at the hospital.
I couldn’t tell which depressed me more–that my dog died or the fact I could not tell a dead dog from a live one.
Keeping the hope alive… and failing…
People were telling me how inspiring, strong, and funny I have been despite my condition.
I accepted these compliments with a lot of gratitude and a little sadness.
Funny- that was the goal (even if it was a bit trying hard. :p). I cracked jokes and made fun of my situation when I had the energy. Just imagine what I told people who asked if I was interested in being set up on a BLIND date! Laughter is the best medicine, right? Maybe I can cure myself?
Inspiring? Strong? I never wished for that–I’d rather have my vision and old life back. 🙂
Still, my morale was high. I was proud. I was confident I would overcome.
And I was wrong.
The world had a major weapon against me–time.
Each day, I lost something—fun times with friends, meetings with my employees, funerals, birthdays, business opportunities, problems I can solve, a relaxing time, a normal day.
Time and the experiences that went with it were a few important things I will never get back.
The time people “spent” for me, they could also never get back
I felt so helpless. People said I was a workaholic. Maybe, but I also loved just sitting in a quiet place and reading portions of the 2-3 books I brought with me. Sometimes I would just drive around the city looking for that perfect spot. I couldn’t even do these things anymore.
I spent most of that time on the sofa or on my bed–sleeping, worrying, and receiving eye medication every 15-30mins, 24hrs a day.
And days turned into weeks. And weeks turned into months.
The pain got worse and didn’t go away. Bad news continued to come in. Maybe another infection, my cornea might perforate etc. Uncertainty was at its highest.
Doctors initially couldn’t figure out what was wrong and what treatment to give me. Laboratory tests showed NOTHING! They couldn’t give me a definite “deadline” for when things will stop and get better.
One of my medications dehydrated me, caused loss of appetite, and practically weakened me. I lost around 20lbs in 3 months. Yehey(?).
It reached a point where I could no longer think of anything else but the pain. I could not work or even just listen to audiobooks to keep me distracted.
I couldn’t even sleep because of it. An hour at a time, that’s how I slept for the first few months.
Blindness + Lack of sleep + Pain + Uncertainty + Physical Weakness = ?
(Sleep deprivation is a form of torture officially sanctioned by the US against captured terrorists. Now I know why).
I just went on automated mode- wishing I can sleep longer so time will “go faster” and I won’t feel so much pain, worry, and sadness.
I was no longer strong or inspiring or positive. I was just confused and depressed. My high spirits were gone. I was defeated. I felt so helpless.
ON FINDING A REASON TO PERSIST….
At the start of this ordeal, I was fighting hard for myself–to see again, to live normally some day, to get better, to be victorious. One day, it wasn’t worth it anymore. Fighting for myself was no longer enough.
But I promised myself I wouldn’t give up because I owed it to the people around me to endure everything being thrown my way, to make myself better, and to come out much stronger than ever.
One of my saddest memories was my mom opening the car door for me. Such a simple act, but my mom was a breast cancer and stroke survivor. I was 32 years old- what was my senior citizen, survivor mom doing opening a door for me?
I never showed my reaction to that incident. But never again did I to allow my mom to open a door for me. I stood straighter and walked faster. I showed her I was going to be ok.
When doctors stopped one of my medications, I started eating better. I would loudly exclaim, “Saraaaap!” when I ate a meal. The joy of my mother was priceless.
All through out this ordeal, I received a lot of love and support from family and friends. I got messages and calls of encouragement, prayers, jokes. Even cupcakes!
I saved the messages, took screenshots, and just read them (yes, I eventually “learned” to read again. You should see the size of the font on my phone though.) over and over during the most painful and saddest times.
I wanted so badly to let all of these people see me smiling, eating, laughing, and living normally again.
VERCHIE’S STORY TO BE CONTINUED ON NEXT POST…