Musings from the ever-changing, ever-amazing and occasionally ever-baffling Fort McMurray, Alberta.

Wednesday, February 24, 2016

A Glimmer of Light

I had a strong suspicion this latest trip to Edmonton was going to be a challenge when the bus I was riding in broke down just outside Wandering River. We limped into that small town, and there we sat for three hours to wait for another bus to finish our trip to the city where I would see my corneal specialist, something I have done frequently in the past year and a half. The new bus finally arrived and we got on board, hours behind schedule but finally under way, and I thought the trip should now go smoothly – right until the next morning when the taxi I was riding in on the way to the corneal specialist broadsided another vehicle that had failed to stop at a stop sign.

Oh, the taxi driver tried to avoid it, stomping on the brakes, but the roads were icy and there was just no escape. I watched as we drifted, seemingly in slow motion, into the side of the other car, and then we spun around a couple of times for good measure before coming to rest in a snowdrift beside the busy street. The driver and I were unhurt, thankfully, but the omens were clear: this trip was doomed.
A new taxi arrived and ferried me to the specialist’s office with time to spare, as I always arrive early and then end up waiting as one always does for physicians. I quite like my corneal specialist, one of the best in the province I am told, although we met under rather inauspicious circumstances in an emergency room as he used medical grade crazy glue to seal the hole that had developed in my cornea, the result of years of an eye disease that had weakened that fragile bit of flesh. Like a punctured tire, my cornea was leaking and he needed to plug the hole, which he did with great precision and great success.

As I sat in the big chair I assumed it would be much like our previous visits – some concern over the increased pressure in my eye, a reaction to one of the medications I must use to control the inflammation, and a determination that I still had no vision, obscured due to the glue that sits squarely in the middle of my cornea and clouds the world.
This time was different, though. The specialist, concerned about the ominously high pressure in my eye, asked if we had ever talked about enucleation.

Now, other people might not even understand what that word means, but I knew instantly. I have never come so very close to vomiting on someone’s shiny black wingtips, as what my specialist was now proposing was not the corneal transplant we had discussed but rather the removal of my entire left eye.
His reasons were sound. The increased pressure meant that I was likely developing glaucoma in that eye, which would eventually diminish any vision I might have once the glue was removed. And we could not be sure how much vision still remained, given that despite medications the pressure had remained absurdly high, although he acknowledged this may have been in part due to an inability of the usual instruments to measure it properly due to the glue. An enucleation would end it all – the pain, the suffering, the uncertainty, the years of medication, the endless round robin of medical visits. No more eye problems. In fact, no more left eye.

We discussed it at some length, me doing that thing I do when I am actually dying inside but pretending to be completely rational and logical and dispassionate. When I left his office it was with the directive to make a decision, removal of my eye or a corneal transplant which may not work, may not result in any vision and which may end in removal of the eye in the end regardless.
I wandered around a local mall in a daze, buying things I cannot even recall wanting or needing but just having to do something to not think about the decision. It was not until very late that night, when I could not sleep, that I faced my demons. I laid on my bed in a darkened hotel room, the only light coming from the screen of my laptop as I read on and on about the procedure of removing an eye and the development of an artificial, or prosthetic, eye.

What I learned would have been quite fascinating had it not been quite so personal. The art of making prosthetic eyes is exactly that, an art often handed down from generation to generation. It is far less science and far more craftsmanship as the artisan molds an eye to fit the socket and then painstakingly hand paints it to match the other eye. Thanks to advances in the technology artificial eyes can even move to mimic the other eye, lessening the effect of a “wandering eye” that is clearly fake to any observer. There are only a handful of such artisans in the country, I learned.
But as I sat there, late at night, all I could think was how we come to places in our lives we never expect to be. I never, ever anticipated I would find myself in a hotel room hours from home contemplating having a piece of my body removed. I would have never imagined myself learning about prosthetic eyes not because it affected someone else but because I needed to know how one cleans them and how long they last.

I don’t share this story looking for sympathy. I suppose I want people to understand that this is how life works – full of surprises of every kind, including the ones that find you staring into the dark in a hotel room as you think about whether or not to remove your eye.
And it was there in that dark that I turned on the flashlight on my cellphone and moved it around the air, trying to see if I could detect the bright light from it. I closed my good eye and used only the “bad one”, the one that has been through so much over the past sixteen years.

The light was above, and then below. Top left, bottom right. I could not see “things”, but my poor beleaguered eye, despite the glue and the pressure and the corneal scarring, was picking up shimmers of that light like a homing beacon.
And it was then that I decided, just as I was so very close to saying it was time to end the suffering and simply remove it, that I had to try the transplant. Maybe it would not work, and maybe it would still end in that prosthetic eye. It certainly meant more pain and suffering and medical visits and an uncertain future, but what I knew was that my left eye had not yet given up – and so nor could I.

This spring I will add my name to the corneal transplant list. In 6-9 months I should be the recipient of a new (well, more accurately new-to-me) cornea. And in short order I will know if I have any vision in my left eye.
There are many lessons here, and much to write about. I want to explore the lack of medical specialists in northern communities like ours, as an ophthalmologist would have likely been able to detect my impending corneal perforation and prevented all of this. I want to explore the artistry of artificial eyes, as even if I never find myself owning one there is a fascinating tale to tell on those, their history and their future. I want to explore the process of corneal transplants, including the wait time and why more people do not donate their corneas and other organs. And I want to write about what it is like to travel through the peaks and valleys of a chronic illness, including the deep dark chasms where one finds oneself late at night in hotel rooms far from home, pondering decisions no one should ever need to ponder.

Today though I share this simple story, of a night where I faced the kind of decision you never think you will face, staring into the darkness until I saw the flash of light coming from my cellphone, telling me that as long as there is a glimmer of hope there is no option but to forge on, not give up. As long as there is just a shimmer of hope – just the faintest bit of light – then we must try even if there is a chance we will not succeed. Perhaps that is the lesson I needed to learn most of all.

1 comment:

  1. Excellent post. You are a very strong person and I wish you much success with the transplant. :)