For several weeks I have been struggling with writing about this topic. Perhaps it is because it is far, far too close to me and my struggles go far deeper than trying to find the words to chronicle it. Perhaps it is because it is difficult to find the words at times when our emotions are so tangled.
As some readers know, I am in need of a corneal transplant. And this summer is likely to be the time when it will happen, as my name now hovers at the top of the waitlist, waiting to be matched with a suitable cornea.
And what happens next is really and truly anyone’s guess.
Almost three years ago when I suffered a corneal perforation, it was just another step in the years-long journey of chronic eye disease. A common virus that attacked my cornea when my daughter was only three months old led to corneal scarring, chronic inflammation of the iris, and glaucoma. The perforation was only the latest in a string of terrible things to happen to my left eye, but it was also undoubtedly the most threatening.
I will never forget the moment the corneal specialist explained how they would plug the hole in my cornea with medical grade crazy glue; and there it has been ever since, a white dot of glue quite literally holding my eye together as we tried to determine next steps. On good days I am in discomfort; this is about 5/7 days. On the other two days I am in pain, and eye pain is difficult to describe without using words like “skewering”, “white hot” and “agony”. What I’ve learned is that eyes don’t like having glue in them, and respond with pain to the daily presence of this very foreign object.
Prior to the perforation my vision had been blurry at best, and the glaucoma had threatened my peripheral vision. After the crazy glue all vision ceased as the glue obscured my vision entirely, and what was happening in terms of functional vision was, and is, largely unknown.
And so a year ago I faced a crossroad.
My corneal specialist said there were two options; the first was to enucleate my left eye.
For those not familiar with the term, “enucleation” is simply a euphemism for removing the eye entirely.
I have never come so close to puking on a physician’s glossy wingtip shoes as I did that day, as while removal of my eye had always been a possibility it was one I had refused to even consider.
Had a physician said we need to remove your spleen or your appendix, I think I would have been okay; aside from the regular worries of surgery, of course. But it seems when a physician suggests removing something you can physically see, like an arm or a leg or a hand or an eyeball an entirely new attitude develops. I can’t see my spleen or my appendix, but I can see those other parts and their loss has a different significance; and so as I shakily pondered the possibility of a glass eye, he suggested the second option: a corneal transplant.
From basic testing we know my eye still has light sensitivity and thus some visual acuity remains. And we know a new cornea will be unblemished, compared to my poor old tired cornea which had suffered repeated scarring from viral attacks. But how much vision I will regain, if any, will not be known until the surgery is done, and likely not even then until several months have passed and the new cornea slowly adjusts to its new home.
The decision was fairly simple: remove my eye and end all problems with it, but also end all possibility of ever seeing from my left eye again, and taking a chance to see.
My friends, life is all about taking a chance.
Several months ago we added my name to the corneal transplant waitlist, and over time my name has gradually risen to the top. During the intervening time I have had much time to think and wait and worry, and engage in new jokes (like my daughter’s favourite, which is a rather morbid “my mom sees through dead people” line delivered in the driest of fashion).
And I have had time to reflect. None of this has been easy, not from the moment my eye disease was diagnosed almost eighteen years ago. Even in the last two years there have been challenges as I have been on medications that caused a cascade of side effects, like chronic exhaustion, ferocious heartburn and kidney stones (I don’t recommend kidney stones, avoid these). There have been times when I feel tired of it all and other times when I feel so fortunate compared to others who face far more significant health battles than my own; and now as I face the transplant I find myself simply in wonderment of what is about to transpire, and how the tragic loss of another life will very possibly change mine forever.
People ask if I’m excited; if by excited they mean completely fucking terrified, the answer is yes. The odds remain in my favour, and I hope to regain some vision. The odds that my eye will reject the new cornea are low; but if it does then there is a chance I will find myself again facing the complete loss of one of the beautiful blue eyes I inherited from my parents.
But I am weary, too. Weary of the battle, weary of the chronically red eye I fight when it is tired or stressed, weary of the pain, weary of the droopy eyelid that appeared a few years ago, weary of the endless visits to specialists, weary of downplaying the severity of this disease and the impact it has had on my life. And so, I embark on this next phase, ready to accept whatever happens.
Because things cannot continue as they are. Either I will see the world through a fresh new cornea (well, slightly used but it’s best not to think of the mechanics too deeply) or I will never see from my left eye again. I accept either outcome.
I have a tendency to downplay things; very few people know much about my divorce for instance as I tend to speak of it lightly, but there is nothing light about the end of a 24-year marriage. And few know the intricacies of the battle I’ve fought with my left eye and the tremendous journey I have ahead, with a significant recovery period fraught with potential for it to all go wrong.
And this waiting for a cornea? It’s unbelievably difficult for someone who has a patience factor of zero. It is a bit like having a baby; at any moment the wheels could be set in motion by a phone call, and 48 hours later I will be the recipient of a new cornea. But it means every time my phone rings I jump slightly, as this could be “the call”. Every morning I wake up wondering if today will be the day, and every night I fall asleep thinking it might be tomorrow.
So there we are. I now sit and wait, and everything in my life has taken on new urgency as nothing can be left to wait or to chance; if the lawn needs to be mowed it must be done now as I might be gone tomorrow, and I feel like I am constantly teetering on the edge of a cliff of uncertainty.
I have debated often on sharing the depth of this experience, but those who know me best know that part of the reason I write is to encourage others to share their experiences, too. So many of us live with chronic illness, disease or dysfunction, but like me we often downplay it in our desire to be stoic (and in some cases like my own a stubborn refusal to admit or acknowledge we may not be Wonder Woman after all).
And so today, like every other day over the last year, I sit and wait and wonder and worry and hope. One day I will get the call and be gone for a few days, and when I come back instead of glue in my eye you will be able to see the tiniest of sutures, where the cornea of some kind and generous soul has been stitched onto me, the very thinnest of tissues giving rise to the very greatest of hopes.
This entire journey has been visionary; it has changed how I see everything. People have asked my how I have kept my optimism through the last 17 years, but in truth isn’t optimism sometimes all we have? And so I enter this phase of the journey with my eye with optimism and with an understanding that no matter the outcome, I have a new vision because of it. While the sight in my left eye remains open to question, my life has come into sharper focus than ever before as in the last ten years I have seen the death of both my parents, the end of a 24-year marriage, the survival of a natural disaster, the transition of my daughter from child to adult and now, most unexpectedly, a corneal transplant.
And the view, my friends? It is, quite truly, resplendent.