Into Darkness

For 73 days of my 20 year old life I was legally blind.

This is not a part of my life that I like to discuss with people, nor is it something I reminisce on by choice. By nature, I am proud, strong, independent, and absolutely loath being the object of pity and charity, but this is the one time in my life that I was forced to lean on others and was totally dependent. I hated it. But it also gave me a new perspective and appreciation for things that otherwise went overlooked.

But first, let’s rewind

March 2004, Semiahmoo Ice Hockey Arena, White Rock, BC: Playing a drop-in game of ice hockey (which I had never played competitively, and really had no business playing), an opponent’s stick gets up under my visor and scratches my right eye. While it is irritating, I have had scratches before. My contact is still in place, and so I continue playing.

Later that night: Lord Tweedsmuir Secondary, Cloverdale: Juno award winning – Group of the Year, SUM41 is playing a special private concert at the rodeo grounds. A few friends and I sneak on to the roof of the school (along with about 20 other kids who had the same idea) to watch the concert from a pretty sweet bird’s eye view. It’s dark, and so we are feeling our way around; climbing, using our hands on dirty surfaces, and generally trying to not get caught trespassing on school grounds by the 5-0.

We are watching the concert, when my contact begins to bother me (or so I thought) – this happens from time to time, as all contact wearers can attest to, from dryness, an eyelash, etc. Being a stupid, invincible, moron, I used those same dirty fingers to touch my contact and try to move it around in my eye. On the drive back to White Rock, it is bothering me so much, that I, frustrated at this point, dig around my eyeball angrily to take it out (hands still not washed).

Over the following days, I continue to wear my contacts (a new set). I find that my right eye is getting progressively more sensitive to sunlight, to the point where it is constantly tearing up, and involuntarily shutting, while stinging ferociously. At last, I relent and go to an optician to see what the problem is. He puts me in the chair and examines my eye under magnification. In silence, he pulls away from the observation tool. He has an extremely concerned look on his face at this point when he states, “We have to get you to a specialist, NOW.” It’s about 6pm on a Saturday, but he makes a phone call to a specialist downtown who says they will come in and see me at their office (this should’ve been my first sign that this was serious).

The specialist, it turns out a world-renowned optician (that title doesn’t do his actual title and qualification justice, I’m sure), diagnosed me with Acanthameoba. An extremely rare ocular virus, I would later learn that it can cause permanent blindness, and that the prognosis of recovery is poor. Mercifully, he did not tell me this at the onset. In fact, the virus is so rare that there has only been 4 reported cases in the last 50 years…I would be the fifth. And it gets better! Because I am a contact wearer, and did so without consideration for viral proliferation, it spread to my other eye as well. So you could say that I’m famous (in the medical community anyways) – By the way, jokes are how I deal with uncomfortable situations, even in writing, so get used to this.

Fast forward

May 2004, Vancouver General Hospital, Vancouver, BC. I have been assigned a cocktail of expensive eye drops (literally 5 or 6 that needed to be taken throughout the day at different intervals, some in the absence of was a clusterf*ck), that could only be imported from California, and that I needed to take, more or less, every hour, on the hour, day and night. Predictably, I have failed at keeping this strict routine, despite moving back in with my parents, and having their assistance with this schedule. I now find myself in a hospital bed in the darkness, because any light causes me blinding pain. I can only see shadows even when my eyes dare to open, because the virus has aggressively spread through both eyes, causing an opaque film to have developed over each. If you need a visual, think of the cow’s eye that you dissected in grade 10 biology…yeah, it was pretty gross. I am now on a schedule of taking various eye drops, applied by nurses, every 30 minutes, ‘round the clock. By the 6th day, I am so delirious from the lack of deep sleep that nurses are coming in to my room asking me what I need. I tell them that I don’t need anything, “why do you ask?” Apparently I’m pressing the “call nurse” button beside my bed, and I don’t even know it. They take pity on me (and themselves), and allow me to sleep for 2 hours straight for the first time in 6 days.

During the daytime, a couple of friends come by with an audio taping of various comedians, bring me music, and talk about how hot my nurses are. I suspect they are lying to make my situation seem a little more appealing, but I appreciate their efforts and don’t let them know of my suspicions. My parents also come every day and spend a couple hours of time with me that I know they don’t really have to spare. I am grateful for the interaction, but mostly just feel guilty. I know they love me, but none of us want to be there. Remember, I don’t like pity, especially that of my friends and family.

The good news is that 8 sleepless days in the hospital has stopped the spread of the Acanthamoeba virus, the bad news that the damage it has caused is irreversible, and has laid waste to both of my corneas (the outer layer of your eye). The virus has spread so far, that it has completely covered my pupils and almost reached the outer edges of my eyes. Over the coming weeks, I would undergo 3 different surgeries, 2 to my right eye (a corneal transplant plus a lens replacement) and 1 corneal transplant to my left. I would be on daily eye drops and weekly checkups for the next couple of years to ensure my body didn’t reject the transplants and the virus didn’t come back. Eventually, I would be allowed to wear a contact in my left eye again (though a played 2 seasons of baseball semi-blind – that’s another story) and would eventually have assisted 20/20 vision.

Present day

This is not one of those life-experiences that are unpleasant but that I am glad I went through. The truth is, I would trade it in if I had the choice, in a heartbeat. I had a lot of opportunities and time taken away from me that I can never get back. A lot of “what ifs” that will never go answered. I don’t believe that ‘everything happens for a reason’, but I can now look back and be at peace, because I have a lot of amazing things in my life that probably wouldn’t have been there had I not gone blind: an amazing wife, wonderful puppies, real friends, and self-actualization. When you can’t see, and there’s nothing to take your mind off of the current situation, you have a lot of time to think. I discovered some valuable truths that I keep with me, to this day:

  • It’s ok to show weakness: I won’t lie; this one is still a struggle. I never want to appear weak to strangers, peers, friends, family, and especially not in front of my wife. I am a protector. I’m big, I’m strong, I’m smart, and there is not supposed to be a chink in my armour. But there is a certain honesty in weakness that I am beginning to value. Years of personal training clients who were brave enough to open up and be vulnerable around me, and to trust me, opened my eyes to this, and the unconditional acceptance and love of my wife has nurtured this within me. You may never get to see it, but it is an ongoing personal battle which I intend on winning.

  • You find out who your true friends are when you have nothing to offer: Who are your real friends? Unfortunately/fortunately you may never be in a position to find out. Well, I did. When I truly had nothing to offer in terms of physical abilities, financial freedom, or even social connections, I had two friends who still stuck with me, without ever knowing if I would get better or not. For that I am eternally grateful. In fairness to some of my other friends, I did my best to hide this affliction from them, and to this day they are only finding out, or still don’t know (now you do). For all of the reasons I am proud to be who I am today, being a good friend, always offering help, and always trying to be there for people I consider my friends, is one of the things I value most about myself. I am far from a perfect friend, but the intention is always there. This can lead to frustration when people don’t reciprocate, but such is life.

  • I am indebted to modern science, organ donors, and Dr. David Rollins: This fact still blows my mind, “If I had suffered this even 5 years sooner, I would be blind.” – From the good doctor’s mouth. Even as I write this it makes me well up a little. I can’t imagine life in darkness. I have so much admiration and respect for those people who lose their sight but continue to power through life, and you cannot imagine how much harder things are for them. For the first 20 years of my life, neither could I. I’m no quitter. If I do feel sorry for myself, it’s for brief moment, and then I move on. But I can honestly not tell you how or who I would be as Brendan The Blind Guy. The corneas I wear today are not my own. Tragically, a young man died a day before my surgery on the Sea to Sky highway. He was an organ donor. I can't express my gratitude enough. Even before this instance, I had always indicated that I would be an organ donor, but I now have first hand experience in its power.

  • It’s ok to be average: I may never say that out aloud, and even writing it makes me cringe a little. My definition of “average” was not in reference to higher level occupations, every day heroes, working single mom’s, etc. No, my definition of average applied to anyone that wasn’t a professional athlete, actor, musician, or basically a celebrity. I remember absolutely be convinced as a 13 year old that I was going to the major leagues of baseball. And I was good. I was fortunate enough to have a good university career and even spent a season playing in the independent leagues. But this was so far from The Bigs that it hurt to think about. Even up until a couple of years ago, I had secret aspirations of a meteoric rise and a comeback for the centuries. Attribute it to wisdom with age, a calming of the spirit, or even just the onset of good ol’ reality, I have come to peace with the fact that I will never get a chance to punch Jose Bautista in the face or be suspended alongside A-Rod for unknowingly taking Performance Enhancing Drugs. I have a good job, a wonderful family, caring friends, and a life that I am extremely happy with. Average doesn’t feel too bad.

Maybe it has made me soft, or maybe it has developed an empathetic nature within me, but life in darkness was an experience that even my words don’t do justice. I don’t need your compassion or your acknowledgment, and God knows I don’t want your pity. But some life lessons can only be learned through hardship. I don’t wish this kind of hardship upon anyone, but maybe sharing my experience will give you something in your current life that you can relate to, and maybe my learnings are something that can help you overcome something you are going through, or just maybe this is something I need to do to close the book on a chapter of my life that has greatly shaped who I am today.

#psychology #diseaseprevention #wellness #mental

Brendan Rolfe
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