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.
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 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.
“I think we should aim higher.”
And so we will.
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.
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:
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.