It Takes A Village

It takes a village.

When my daughter learned she had been selected as one of the 2018 Top 50 Under 50 in our community, this is what I said to her.

My daughter grew up in Fort McMurray. I always knew her future would likely take her away from this community, and so it has as she studies engineering in the sunny and warm community of Kelowna. But while she has left Fort McMurray, it has never left her.

When she first started university, she was asked to deliver a speech to the incoming students who were recipients of major scholarships. When she told me the focus of her speech, I recall feeling such pride; her speech was not about her accomplishments or her plans of future career success.

Instead she spoke about her excitement over what she hoped to be able to contribute to her new community.

And I have no doubt that is because she grew up here, a place that prides itself on contribution – to our national economy, to our social profits, to philanthropy in general and to each other.

When she was named one of the Top 50 Under 50, I knew she would see it as an honour – and a challenge. After all, we can sit on our accolades or we can build on them, choosing to continue to strive to achieve more; and not just for ourselves but for the benefit of others, including the communities in which we reside.

I am pleased to say she is very active in her university community; she serves on the executive of several student organizations while continuing to pursue her degree, because she knows life is about more than jobs and degrees and personal success.

Life is about service to others.

Fort McMurray, the honour my daughter received isn’t hers alone. It belongs to all of you, as you are the village that raised her. It belongs to the Fort McMurray Public School District and Beacon Hill School and Ecole McTavish and Westwood; it belongs to the Fort McMurray SPCA and the Wood Buffalo Food Bank and the Centre of Hope; it belongs to the Westwood GSA; it belongs to all the adults and kids who touched her life when she was growing up and who contributed to who she has become.

And yes, I am proud of my daughter. But I am also proud of Fort McMurray, the kind of place that raises kids like mine and so many more, who take what they learned about contributing in their home town and use that knowledge as a launch pad to contribute to the world.

And yes, I am so proud that when she is asked about her home town, she proudly says she grew up in Fort McMurray. As her path takes her to other places, she and the children like her who grew up here serve as the best kind of ambassadors.

It takes a village. And like my daughter, I am so glad her village has been Fort McMurray.

My Mother’s Voice

The flight was late. And the connection was tight.

We were flying out of Fort McMurray, a plane packed mostly with shift workers heading home after many days away. In front of me was a group of men from eastern Canada; the flight delay meant they had already missed their connection, so in making the best of it they were drowning their sorrows with selections from the airplane bar.

I was in my seat, anxiously eying the time and trying to figure out the chance I would make the connecting flight; it was the last one of the day to my destination, and even worse I had been listed as stand-by on the oversold flight so I would need to plead my case to the passenger service agent when we arrived.

Every second counted.

When we finally pulled into the gate after what seemed to be an endless time on the tarmac, the group in front of me was slow in collecting their belongings; after all, they had missed their flight and so there was no need to rush.

On airplanes, the usual approach to disembarking is to go row by row, waiting patiently for those in front of you to move along.

I am normally a patient person; I am not a line jumper. But this time I did not have the time to spare, and so I grabbed my things and brushed past the group of slightly older and now slightly intoxicated men.

“I guess she must be special to be in such a rush” sang out a voice from behind me.

“Must have some place very important to be,” said another, and a chorus of laughter arose.

The words were like arrows in my back. Despite my hurry, despite my need to move quickly, I paused for a moment. I considered saying something to them, something to answer their derisive comments; and then I straightened my back and hurried off the plane, where I pled with the gate attendant to put me on the flight, to give me the last standby seat.

So I could get there before my mother died.

That is what I would have said to them.

“I am in a hurry,” I would have shouted. “My mother is dying, and I am trying to get home before she does. So I can say goodbye.”

I suspect it would have shamed them; in my experience folks from the east coast of our country are some of the very kindest I have ever met. I imagine it would have changed their attitude, perhaps even provoking an apology; but I did not say those words as while I had thought them I wasn’t ready to say them yet, because it would make the entire surreal experience, which had begun just twelve hours before, real.

In retrospect, I think that experience – a few casual words on an airplane – changed me forever as it proved a lesson I already had known to be true but had failed to yet come to know first hand: you never know what is going on in the life of another person.

My rush to get off that plane undoubtedly seemed rude; it went against the norms and protocol of airplane travel. And yet I am almost certain that not a single person would have resented it had they understood the reason for my hurry, or the nature of my travel.

That I have never forgotten this incident, despite it occurring several years ago, is evidence of how deeply both those words and that experience impacted me.

It is perhaps the moment when I first really understood the need to reserve judgment, to assume goodness, to believe that there are reasons why people do things we may not always understand.

The truth is we may not always know the entire story.

Kindness and compassion cost nothing; and in the absence of the entire story, they should almost certainly always be our default setting. They were something I had always practiced, but after that experience on a plane as I flew to be with my mother before she died they became my guiding principles.

I never wanted to be the person who hurt someone else simply because I didn’t know their story. And we all have a story.

I tell this tale not to shame the men who said those words; and not for some sense of retribution or revenge. I share this tale as we head into a new year as a gentle reminder (both to myself and to any who wish to hear it) that we have the power to show kindness and compassion even when it challenges us to do so; even when the situation does not seem to warrant it.

There was one person in my life who embodied the kind of compassion and kindness that allows us to practice it when we don’t know the entire story; and that person was my mother.

In the end, I boarded that last flight to my final destination, and I had the opportunity to not only say goodbye but to hold my mother’s hand as she left this earth. I learned so many lessons through her death: the tremendous gift of life, even when it is fragile and fleeting; the need to live – and love – every day as if it is your last; and that kindness and compassion are two of the few things we can give freely and without reservation.

And now when I think back to that day on the plane I don’t even hear those voices anymore, the ones that felt like arrows in my back; instead I hear my mother’s gentle voice, filled with the kindness and compassion I now work every day to instill in my own voice – and my heart.

The Best of Us: Remembering Bo

It is a fairly simple plaque; the bronze gleams in the autumn sun as the plaque is as shiny and new as the fire hall it adorns. A small town comes together to celebrate the opening of this new fire hall, but it isn’t just the beautiful new hall they welcome;  it is this memorial to a young man who was, undoubtedly, the best of us.

I have written about Bo Cooper many times; this may seem unusual given that due to circumstances and situation I never met him during his all too-brief time on this planet. But I have met his parents and his wife; his friends, his firefighter family and the many people his life touched.

And when I say he was the best of us, I mean it. Bo was a fighter – a firefighter, a MMA fighter, a cancer fighter – and if there is any word that springs to mind when I think of the people of this community it is that: fighter.

We have fought our way through so much in recent years; economic adversity and a raging wildfire being only two of the things we have faced. And we have met all of these challenges as fighters; resilient, determined and unwilling to ever give up.

Bo was a fighter. He fought for others when he fought fires, and he fought for himself during his battle with cancer. And Bo wasn’t just the best of us.

Bo brought out the best in us.

When I meet people – journalists, visitors – who ask me to summarize this community I tell them the story of Bo Cooper and how an entire region came together to fight with him. The wine raffles, the bake sales, the average, every day person who contributed whatever they could so one young man – a young man they often didn’t even know – could continue his fight.

Bo brought out the best in us; he brought us together in the most remarkable way, and I think sometimes that is what prepared us for how we faced the fire in 2016. We had found such strength in coming together for Bo; and when the fire threatened our community and began to singe the community bonds we had forged, we did what we knew we had to do.

We fought. We fought for ourselves and for our neighbours. We dug in and we dug deep, we found our strength and our resiliency. And we knew we would never, ever give up on each other or this community.

We never gave up on Bo; we will never forget him. I know that even though I never met Bo, he changed me and how he lived – and how this community fought for his chance to live – inspired me.

And I don’t think I am alone. I think Bo Cooper changed all of us, whether he ever intended to, whether he ever knew he would or had, whether he wanted to or not.

Bo was the best of us. And he brought out the best in us, showing us all how to fight and never give up.

Yesterday I was there when the plaque dedicating the fire hall in Anzac to Bo was revealed. It was a beautiful fall day; dozens of community members had gathered and eyes filled with tears as we collectively remembered and honoured this young man.

I wish things were different; I wish Bo were here with us today, with his parents and his wife and his friends and his firefighter family. But life doesn’t always grant our wishes; it is unpredictable and it is undoubtedly unfair. But sometimes in life we are part of an experience that changes us and that, like a stone dropped into a pond, ripples far beyond the original point of impact.

The best of us and the best in us; what a remarkable legacy. What Bo left behind is nothing short of a community forever changed; and forever better. We found our own strength, our courage, our determination and our fighting spirit through him and because of him.

Bo was the best of us; he brought out the best in us. And while I know he was likely grateful for the way this community came together to support him, it is we who should be grateful to him. He showed us who we were and who we could be; and as we fought beside him and with him we learned to be fighters. And while Bo may be gone, his spirit will always be with us, in a community that will never forget – and never, ever give up.

 

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The Death of the Five-Year Plan

Almost two decades ago, when I first moved to Fort McMurray, someone approached me at a house party and asked what our plan was. They were someone who had lived here for awhile, and I told them our plan was to buy a house, and maybe I would find a casual job…and they laughed. They asked what our PLAN was – were we here on the three, five or ten year plan?

I remember how puzzled I was. They went on to explain that virtually everyone who came here did so with a time-limited plan; a built in exit strategy that guided their choices over that time span.

I have never forgotten that conversation, as it had a profound impact on me. Fort McMurray was in a period of prosperity then, and for many years after that continued to be, attracting residents from across the country and around the world; and many of them came with a plan.

The plan was fundamentally based on money. Get in, earn lots, maybe flip a house as the market was then still red-hot and then get out with your cash, often with the intent to go back to where you had come from. You know – to go home.

This line of thinking troubled me as what it meant is that some who lived here on such a plan did not consider this home. Undoubtedly, that shift in thought affected how they interacted with the community. I recall a neighbour who said they wouldn’t volunteer as after all, this wasn’t really home and they wouldn’t be staying past three years. The transient nature of the community was very real and very tangible; people came and went with an intensity that made me often wonder if the Klondike gold rush had felt similar. In this case though, they came to pan for black gold, helping to draw bitumen out of the earth.

And then, as things often do in a resource based region, things changed. The oil industry, once the economic engine of our community and really our country, began to struggle due to low oil prices and high production costs. And with it went the overtime and bonuses and massive wages on which many of those year-plans were based.

And then, the fire in 2016. The economy of oil had set the stage, but the wildfire truly set the play in motion as those who still clung to the concept of the plan found themselves facing a decision: return to Fort McMurray and accept the challenges ahead, or opt out for another life elsewhere?

Some returned. Some left. There is and should be no judgement in that; they made their decisions based on criteria known only to them and valid in each and every case; but I think the fire was perhaps when the concept of the five-year plan finally died.

You see, when I meet people now – people who have arrived after the fire – they never mention the five-year plan. They talk about why they have come here and what they have found since arriving; they talk about what they hope to do. But what they do not seem to do anymore is to discuss their exit strategy based on the concept of getting in and getting out with pockets full of cash, as while we are still home to great opportunity and potential, we are no longer an oil rush city.

And I, for one, do not mourn the death of the five-year plan. It was such an odd phenomenon to me, and one that I think was truly detrimental to the work being done to build our community, because the pattern of thought it encouraged – to consider this only a stopping place, not home – affected the way people invested emotionally.

I am not saying those who lived here under such a plan did not contribute, as I know they did; but what the plan did is limit their ability to commit fully and completely to this place as in the end their mind – and their heart – was elsewhere.

The economic challenges we have encountered, along with the recovery from the wildfire, have not been easy. What I have found is that many of the people who have remained here may have come once long ago on a time-limited plan, but it has long been abandoned. And those who are arriving to this place with fresh new eyes, those who have not seen the times of boom and flames, come with optimism and no time limits; they come because their end goal isn’t necessarily to leave.

I find it tremendously refreshing. The last house party I attended was bustling with people talking about their work, their hobbies, their kids, their volunteerism…and nary one single comment about “the plan”. I looked around and thought about how the transient nature of this community has finally changed; how those who are here and those who are arriving are choosing to call this home, not a stopping place.

It hasn’t come without challenges, and there are undoubtedly more to come. But when I asked someone new to the community about their plan – asked if they were on the three, five or ten year plan and they looked at me with deep puzzlement – I knew that we will be okay, because the five year plan appears to be dead.

And I, for one, won’t miss it.

Pride and Prejudice, YMM

In 1984, an obscure British band named Bronski Beat released a song called “Smalltown Boy”. On their debut album, the song not only went on to secure them fame in the 80’s New Wave scene, it also became an anthem for millions of young adults coming of age in that era. And for some, like me, while it wasn’t my anthem, it opened our eyes to the stark reality of the world: young people felt forced to leave their homes and communities for one sole reason – because they were gay.

In 1984, I was in my final year of high school. Growing up in Saskatoon, Saskatchewan, I had friends who were gay, although the letters we now use (LGBTQ or some variant of) were not yet in common use, and in my limited understanding I believed people were either gay or straight; it’s all I knew at the time. And thanks to my parents, who might have been older, hard-working German Canadian farmer types but yet the very embodiment of never judging others on anything other than their actions (were they kind? Were they friendly? Were they good?), I never judged my gay friends and in my clear naivete thought this was true of others, too.

I left home at the age of twenty, leaving Saskatoon behind as in my existential-crisis-white-suburban-middle-class-straight mind, I knew the answers I sought couldn’t be found there. I went to Toronto for the adventure and the mayhem, to grow up and grow smarter, to finally begin to realize how fortunate I was compared to those who left their families and their communities solely because they were not accepted due to their sexuality.

I never experienced that, as even though I had perfected the 80’s goth-before-it-was-a-thing look, the discrimination I experienced was so mild it was laughable, and in reality it was all a faux-rage based on an appearance I could change in a heartbeat, unlike my friends who would remain gay as long as their hearts beat.

It was Smalltown Boy that woke me up, and as one after another of my gay friends left my city, I knew it was because they felt that had to and not necessarily because they wanted to. To find acceptance and a community, they would go to cities like Toronto and Vancouver and Montreal, places where they could blend in instead of standing out, and hopefully minimize some of the discrimination they experienced on a daily basis.

And I suppose that is one of the reasons I find myself somewhere on the verge of angry and sad tears every time someone questions the need for things like Pride events; because while we have come so far, my little city of Fort McMurray still has a very long way to go.

There are people who claim being LGBTQ is no longer a big deal, and that therefore there is no need for events to celebrate it; and yet I KNOW that there are still smalltown boys and girls in our own community who turn away and run away from this place because the answers they seek will never be found at home in a community where prejudice still exists.

And it takes me back to 1984, over three decades ago when an obscure band wrote an anthem for a generation, and I feel heartbroken that even now the song has relevance instead of seeming dated and reflective only of the past and not the present.

There are so many examples of this; the people who say they are tired of “gay lifestyles” being shoved in their face, and yet who don’t blink an eye at the landslide of heterosexuality in movies, television shows, books, songs and advertising; the people who object to student-led GSAs, which may be the only safe place for our smalltown children to express who they are; the people who suggest there is a gay agenda, despite never being able to articulate what exactly that might be; the people who think being LGBTQ is somehow contagious, as if they can catch it and as if it somehow in some way impacts their own existence, which it does not and cannot unless of course they happen to be LGBTQ.

My parents were simple folk. I don’t know if they know how many of my friends back then were gay; I doubt they cared. What mattered is that I loved my friends, and so they did too, feeding them and helping them fix their cars and giving them a glimpse of the kind of home some of them did not have; and when they turned and ran away from my community, my parents felt their absence, as did I.

And that is why I have become such a staunch supporter of events such as Pride YMM and GSAs in local schools and our LGBTQ community; because until no smalltown boy or girl feels the need to run away from our community, we have failed. Until the day when they leave only because they want to, and not because of prejudice, discrimination and lack of acceptance, we have failed them as the adults upon whose shoulders the present and future of this community rests.

And I refuse to allow us to fail. I believe my home is one of the most amazing places in the world, but it is not perfect, and the ongoing exodus of some of our best and brightest because their sexual orientation differs is sharp evidence of that. And please don’t try to tell me this isn’t happening, as I know it is. I have witnessed it, and no matter the strength of your denial, the truth prevails.

This month we will celebrate Pride YMM. I will be there, as will my daughter. And while I will take great pleasure in the smiling faces and the positive atmosphere, I know I will still on occasion hear the strains of that Bronski Beat song running through my head as I reflect on how much has changed and yet how much has stayed the same; and I will know that true success will only be found when there are no more smalltown boys or girls who need to turn away from their homes, because instead of prejudice all they see is welcoming and acceptance – and pride.

Regaining Vision: New Cornea, Part Two

When I began to formulate the telling of this tale, I realized I wouldn’t be able to truly do the story justice in one post. As I prepared for my own journey through this experience, I found myself doing long internet searches not for medical articles but rather stories from those who had traveled a similar path; and so I hope my story perhaps helps someone else who is googling late into the night, searching words like “corneal transplant”. I also hope perhaps it opens a dialogue on organ and tissue donation, a topic I didn’t give much thought until the day I learned I would be the recipient of a gift from a total stranger: a cornea. This is my story; and the story of two corneas. You can find Part One here.

The Surgery

You can find fairly detailed accounts of the actual corneal transplant procedure online; much like any other surgery or hospital experience what stands out is that there tends to be a lot of waiting, with long periods of inactivity and sudden flurries of intense motion. Perhaps that’s why once we don one of those gowns we are called “patients”?

I arrive at the hospital in the late morning accompanied by a dear friend who has not only volunteered but insisted on being my support for the experience. After finding our way through the maze of a large multi-faceted hospital complex I am assigned to a room and a bed; my stay will be brief though as this transplant is a day surgery.

The nurses are invariably kind and seem amused by the running patter between my friend and I; the truth is that neither of us is particularly reverent and can find any situation amusing, even a hospital room pre-surgery.

My specialist has explained the procedure well; it will take place under a general anaesthetic which is a relief to me as my last two eye surgeries were done with local anesthetic and I found the entire experience rather traumatic.

And of course my quirky sense of occasion must be met, and so along with my gown I wear socks emblazoned with Wonder Woman, which in the end is met with much merriment from everyone who sees them, from nurses to the OR staff.

I wear them because they make me smile; but I wear them too because of the implicit message. I can do this, they say. I’m Wonder Woman.

When the time finally comes to be wheeled down to the OR, my friend departs, as she will be called when I am ready to go. I watch her walk down the hallway as I am on the gurney behind her; she departs down one elevator into the world while I am taken down another into the pre-surgical area.

This is where the real work begins. The placement of an IV, the donning of a blue surgical cap, and once again I wait. A quick visit from my specialist reveals that the cornea I’m about to receive is, in his words, perfect and beautiful.

A perfect beautiful cornea.

It is there in the pre-surgical area, lying on a gurney, waiting for my turn in the OR, that I take a moment to think about the gift I am about to receive. Tears fill my eyes, and then suddenly a flurry of activity surrounds me. A charming Scottish nurse who sees the cat scratches on my arm and comments that I must own dragons, not cats; a stunningly beautiful anesthesiologist who makes a surgical cap and scrubs seem fashionable; my own corneal specialist quietly making jokes as I arrive in the operating room. Just before they begin, the nurse asks what I do; when I tell them I am a writer she laughs and says they will try to give me something to write about; and so they have.

An injection in the IV, a mask over my mouth, a voice saying night-night, and I am out.

I wake a couple of hours later in the recovery room, surrounded by several nurses chatting; as soon as they realize I am awake I am wheeled back to my room. I feel groggy, but okay; the worst part is my sore throat from being intubated. My left eye is covered with a patch but I feel no pain; a few hours in the hospital room and I am released for the night, to return to see my specialist in the morning for the big moment: the removal of my patch, and using my new cornea for the first time.

The Reveal

The next morning my dear friend and I stop at Starbucks for coffee; and then we are off to the office I have been visiting regularly for the past almost four years. This time, though, is different.

When we are called into the examining room I am nervous – and excited. I don’t know what to expect, but I know I expect something. The ability to see, even just a little bit; nothing huge as I know it takes time for vision to adjust with a new cornea.

The assistant enters the room and removes the patch…and then, after years of waiting, I see…

Nothing. A dark grey mist fills my left eye, and I feel at first confused. Perhaps this is normal, I think, although it does not match what I have read and heard from others.

When my specialist arrives, he examines my eye, and then gently explains that during the surgery, hidden behind all the glue, he discovered a large cataract; and to make matters a bit worse, my pupil has attached to the cataract and is now tightly constricted.

A second surgery will be needed in the future.

And until then, no vision.

The disappointment washes over me. I balance it with the fact that for the first time in years, despite the surgery I have just gone through, my eye does not hurt. And so I say to him that even if this is it, even if it is just a blind eye with no pain, I am okay with this outcome.

His words?

“I think we should aim higher.”

And so we will.

The Realization

It took a few days for it to really hit me. It was about three days post-surgery when I allowed myself to really feel anger, sadness and disappointment.

Have you ever received a Christmas gift and while it was wonderful and fantastic, it wasn’t quite what you wanted? You don’t want to seem ungrateful, as it is a really great gift, but you thought you were getting something else; and for a moment you must manage this disappointed feeling as you let go of what you wanted and learn to celebrate what you have received.

Not all of this was directed at my eye, but rather at myself. Over time I have learned to minimize my expectations and instead accept life as it comes; but this time I had allowed hope to transform into expectation, only to have it crushed.

I had come to believe I would have vision again, an “oh my god I can see” moment, and I was devastated to have been robbed of it; but the truth was this had never been guaranteed. This was just the ending I had wanted; but I am old enough and finally wise enough to know that things rarely end the way we want them to.

One cannot live in a state of anger, sadness and disappointment, though. As I have done so often before, I picked myself up, brushed myself off, looked at my new cornea in a mirror and admired the tiny sutures holding it in place and remember the words of a friend when they saw it for the first time:

“This is a miracle.”

And so it is.

The Recovery

It is astonishing how our body works to heal us. Ten days post surgery and my new cornea is settling in nicely. Truth be told, the worst part was likely the recovery from the general anaesthetic. My eye has continued to show daily improvements, and for the first time in years I am pain-free.

And there, under my left eyelid, is a blue eye, the one I inherited from my parents, but now with a “windshield” cornea gifted from a total stranger.

I think it is beautiful.

Regaining My Vision

What is vision? It is the ability to see, but it goes beyond the physical.

Over the past few years as I lost my vision I discovered an ability to truly see; to see what matters, to understand the uncertainty and fragility of life, to celebrate the small things, to focus on the positive and to see beyond what our eyes can process.

Through this corneal transplant I did not regain sight in my left eye, although we still have hope for that in the future after cataract surgery.

But my vision was sharpened once again.

We can allow our experiences to break us or build us; we can decide to give up hope or we can find it renewed every where we look.

I have hope. I will always have hope, because I have learned it is who I am. I am unable to view the world in any way but through a lens of hope; and so despite still being blind in my left eye, my vision is crystal clear.

Much of this hope is thanks to the generous gift from a stranger; it is hard to put into words what one feels as the recipient of a transplant, but in the pre-surgical room as I waited to be wheeled into the OR I did my best to give it voice.

There are a few things that have come from this experience; some have asked why I am so very open and honest about it, and the truth is because I want people to consider organ donation. I tell everyone I know about the transplant because I want them to see that organ donation affects people they know; and I want them to sign donor cards, register with their organ donor registry and let their family know their wishes.

I hope that through my experience they understand the impact they can have on the life of someone else; even a total stranger and even after their time on this earth might be done.

What would I say to my donor? These are the things I thought just before my surgery, and they are even more true now as this beautiful, perfect cornea heals. There are moments when I still pause, overcome that at this very moment a tiny piece of another human being is stitched onto me; it is in indeed a miracle. But it’s more than a miracle – it’s a miracle performed by a person, the one who gave me this gift. And these are the words I thought as I waited to accept it:

Dear Donor,

I don’t know your gender, or your age. I don’t know what you did for a living, if you had a family or how you died.

And I don’t know if you were what we would consider a “good” or a “bad” person.

But none of that matters, because what you are is a hero.

Today for a brief moment I shared an elevator with another patient, and it turned out she was also receiving a new cornea. And I knew that in that tiny elevator were two people whose lives you were about to change with your precious gift. Two people. And very possibly many more.

Thank you doesn’t seem nearly enough for this kind of gift, so instead I will make a commitment to you, dearest donor.

I will take good care of your precious gift.

I will use it to view the world through a lens of optimism, kindness, positivity and hope.

And I will never forget that you chose to give this gift even though you would never be there to see someone receive it.

I don’t know what you’ve seen in your life, dearest donor. I hope whatever you saw, it was beautiful; and I want you to know I plan to continue to use your perfect, beautiful cornea to see that beauty as often as possible. 

Thank you, dearest donor. Thank you for the gift of hope.

TW

New Cornea, Who Dis? Part One

When I began to formulate the telling of this tale, I realized I wouldn’t be able to truly do the story justice in one post. As I prepared for my own journey through this experience, I found myself doing long internet searches not for medical articles but rather stories from those who had traveled a similar path; and so I hope my story perhaps helps someone else who is googling late into the night, searching words like “corneal transplant”. I also hope perhaps it opens a dialogue on organ and tissue donation, a topic I didn’t give much thought until the day I learned I would be the recipient of a gift from a total stranger: a cornea. This is my story; and the story of two corneas.

The Beginning

There was something in my eye. Like an eyelash, but sharper, pointier. I scan my painful eye with a flashlight and can find nothing; my then-husband looks but also sees nothing. My daughter is a newborn, 8 weeks old, and life is a blur of breastfeeding and diaper changes and laundry. I am exhausted; but after 24 hours the something-in-my-eye feeling has not subsided and so I head for the family physician.

It is a small town; there are no eye specialists and even the optometrist who doles out prescriptions for glasses only visits on a monthly basis. A cursory exam from the physician, who is not my own but the one on call, a diagnosis of conjunctivitis and a hasty prescription and I am out the door to deal with my weeping eye and shrieking baby.

A few days later and the eye has not improved but worsened; now it is shockingly red and so light sensitive I cannot be outside without significant pain. Despite my general new-parent exhaustion, I begin to realize something more is going on. I decide to return to the clinic the next day.

Then, I wake up the following morning and it is like I am inside a snow globe. Despite it being early December and snow gently falling outside my northern Ontario home, this particular snow storm is inside my left eye, and I see through what appears to be a drifting of heavy grey snowflakes as they cross my vision.

The optometrist is in town. I am on my way to his office, and what I learn there will forever change my life. It was not conjunctivitis, but rather herpes simplex Type 1 that has attacked my left eye. The delay in diagnosis means that my cornea has already suffered significant scarring; the pressure inside my eye is shockingly high, and I risk damage to my optic nerve. All the inflammation has triggered iritis, a painful condition which further risks my vision.

A quick view through his lamp, and the optometrist has me scheduled with an ophthalmologist in Winnipeg, over seven hours away. This is now an emergency, and my vision is in peril. We begin the long drive, never anticipating how long this trip will truly be.

I don’t know it then, of course, but these are the early days in an almost nineteen year journey with a chronic eye disease.

It is probably better that I did not know then what I know now.

The Backstory

From that fateful day in 1999 to now has been quite the journey; anyone who has suffered a chronic illness for any length of time will understand this well.

The last two decades have been littered with appointments with specialists; a variety of medications; flares of the original virus and of the ensuing iritis; an emergency surgery designed to address the glaucoma in my eye; and just under four years ago waking up with a startling bad headache and a left eye that seemed to be weeping uncontrollably.

Another visit to a local optometrist; another quick view with his lamp and another emergency trip as he discovers, for the first time in his forty years in practice, that he is seeing a perforated cornea which is slowly leaking fluid and again risking what little vision I have left (now blurred at best due to the scarring of the cornea).

In Edmonton his diagnosis is confirmed; and once again I find myself in the operating room at the Royal Alexandra Hospital, this time to have medical grade crazy glue inserted in my eye to stop the leak and preserve my eye.

I leave the hospital with a bandage contact lens and glue in my left eye, now totally blind in that eye due to placement of the glue; and I begin life as a person with monocular vision, once again unsure what the future might hold.

The Decision

I am so fortunate to have a corneal specialist who is one of the best in the province; perhaps even the country. Over the course of the last four years, he and I have watched that glue in my eye to make sure it held the seal, like the patch on a rubber tire; and finally, we began to discuss the options.

Even though I could not see because of the glue, I retained light sensitivity, meaning I was not entirely blind in my left eye despite all I had experienced. And so, because the glue could not stay in place forever, a decision needed to be made. My eye, which had now had glue in place for almost four years, was uncomfortable most days. Some days it was quite frankly painful. It was often red, sensitive to everything and I had tired of the constant questions about why my eye looked “sore”. It looked like there was a glob of glue in my eye, because there was.

It was time to make a choice.

The choices were few. In fact, only two.

I could opt to have my eye entirely removed, thus closing the entire saga but also of course ending any hope of ever regaining sight; or I could opt for a corneal transplant, with a potential for vision.

Neither option seems particularly appealing; the evening after the appointment when we discussed it was long and dark one as I contemplated the options. There is a book by Douglas Adams I quite like, not so much for the content as for the title; and I call those moments of my life “the long dark tea times of the soul”. That night was a particularly long and dark tea time.

After a sleepless night googling words like “enucleation”, I call his office.

In this case, hope was better than closure.

I opt for a transplant. He says he expects there’s an 85% chance of regaining some vision; reason enough for hope indeed. And so a small seed of hope, one that was always there, began to take root.

The Delay

The wait list for corneal transplants in our province has decreased dramatically in recent years. Thanks to the importation of corneas, the wait is now 6-12 months as opposed to the 2-3 years it once was. One can only imagine how increased donation rates would lessen this even more; in my case though it took a bit longer as I opted to delay it slightly when I took a new job. As my case was not considered urgent and my eye was stable, this was a reasonable course. This spring, though, I told my specialist during a routine visit that I was ready, and I was hovering at the top of the list. His advice?

Keep my bags packed. It would be soon.

The Call

It is a Friday afternoon, around 4:30 pm. I am just getting ready to leave my office and glance at my cell phone. I’ve missed a call just moments before, and I recognize the number on the call display immediately.

It’s hard to capture my feelings in that moment, as I know what the call means. I am excited, and afraid. I’ve come so far on this journey and now, finally, after almost four years of blindness in my left eye, I have come to hope – maybe even believe – that I will have vision again. Maybe not perfect vision, but maybe enough that I will again have the ability to see depth, where the world does not seem flat, where depth perception saves me from the perils of uneven stairs and sidewalks.

I dial the number; there is a cornea. It’s mine if I want it. And I do.

On Tuesday I’ll meet my new cornea in the operating room. And we will become very, very attached.

I am almost overcome; first I attend to the practicalities, the people who need to be notified and the things that need to be done.

As the weekend passes I find myself more introspective, and as the surgery draws closer more hopeful.

Maybe, just maybe, this journey is finally reaching a destination.

What I Learned During Part One of the Journey

  • A unilateral sore, red eye should always be examined by an ophthalmologist (or at least an optometrist who can refer). Anything that affects only one eye is unlikely to be conjunctivitis or allergies, and may have a more sinister cause. Regular physicians are not trained or experienced in diagnosing eye disease; and to delay diagnosis is to take a significant risk with a tender body structure that is easily damaged.
  • Even if you’ve never experienced a cold sore, HSV-1 may be dormant in your body (it is in the vast majority of adults) and in some when it activates it takes a wrong turn in the nervous system and heads to the cornea. If you do experience cold sores, practice good hygiene and never touch your eyes after touching your lips as you can inoculate the virus directly into your eye by doing so. HSV-1 is a leading cause of blindness; and since my diagnosis I have met dozens of other people who have experienced an HSV-1 infection in their cornea. It may be unusual, but it is not rare.
  • One rarely thinks about organ donation until one needs an organ. In my case, it’s a quality of life difference; for others, it’s simply the difference between life – and death. Please sign your donor card. And tell your family your wishes, too.
  • Often when you have a chronic illness people talk about how strong or brave you are; to be honest there aren’t really a lot of other options. And no matter your strength or bravery, chronic illness sucks. Being in pain sucks. Constant visits to doctors sucks. Uncertainty sucks. In fact, everything about it pretty much sucks, but what really sucks is there isn’t a damn thing you can do except – you guessed – face each new challenge with as much strength and bravery as you can muster.
  • Sometimes, you just learn to fake being strong and brave. And that’s okay, too.
  • Never google the word enucleation. Just trust me on this one. Seriously.