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

Thursday, June 19, 2014

My Left Eye - A Dance With Chronic Disease

There was something in my eye.

It was a sharp feeling, like something more substantial than a hair, and it hurt quite badly. I remember asking my then-husband to look in my eye and pull out whatever foreign object had lodged there, desperate to get it removed. But when he looked in my left eye he saw nothing, even though the sensation of something being in that eye never wavered.

I remember it now, almost fifteen years later, astonishingly clearly. The Intrepid Junior Blogger was a newborn, 10 weeks old and I was immersed in that stage of parenthood that I think of as purgatory, neither heaven nor hell but a place where you are in touch with aspects of both as you fall deeply in love with your child at the same time you are so sleep deprived you are not sure how you are still breathing. My sore eye was the least of my worries, really, mixed up in a jumble of breastfeeding and parenting uncertainties and loads of laundy. But when the painful eye continued into day two, and then day three, I began to worry. When I realized I could no longer stand light shining into that eye I knew I needed to see a doctor.

I lived in a very small remote place then: Red Lake, Ontario. I wish I had understood back then that for a sore eye one didn't see a general physician, as while they try to help certain specialties are best left to those who have trained in them. When the general physician diagnosed me with conjunctivitis I wish I had questioned it, understanding that eye infections of that sort are very, very rarely unilateral in nature and did not present the way my eye did. I wish there had even been an ophthalmologist in our town, or even a full time optometrist who could have viewed my eye and identified the real issue lurking there, but there wasn't, just an optometrist who came to our community one week every month.

So I went home with my new baby and a bottle of eye drops which I used faithfully as my eye rapidly got worse.

After a few days I went back to the general physician, and I saw alarm in his eyes. He immediately picked up the phone and called the optometrist's office, being lucky enough to hit on a week when he was there, and I was referred over immediately. Within four hours I was on the road to Winnipeg, because "something in my eye" had turned into a medical emergency.

You see, the "something" in my eye was something called a "dendrite" - and it was not a foreign body at all. It was the result of a virus, the virus that in most people causes cold sores on the lips, taking a wrong turn in my nerve system and lodging in my cornea, creating a massive "cold sore" on the surface of my eye. No one knows why the virus - herpes simplex I - does this in some individuals, especially given that I had never even had a cold sore before or any signs of harbouring the virus, although virtually everyone does, with almost 90% of adults having it dormant in their bodies. My new ophthalmologist theorized that it might have been a nosocomial infection, meaning that I might have been one of the few adults never exposed and that I had contracted it in the hospital while delivering my daughter a few weeks before, but there was no way of ever knowing. What was known was that I was suffering from corneal herpesvirus in my left eye, a disease that is the leading cause of corneal blindness in both the developed and developing world.

By the time I was properly diagnosed it was too late in some regards. The virus had caused massive scarring of my left cornea, scarring that is irreversible and untreatable short of a corneal transplant (a surgery several of my doctors cautioned against unless a last resort, as it is fraught with its own perils and problems). The virus had done more damage, though, causing an inflammation of my iris that now was creating a problem with the internal pressure in my eye.

Just as you have blood pressure you have an internal pressure in your eye - called Intra Ocular Pressure (IOP). When you see the optometrist he or she often does that irritating little test where they blow a puff of air onto your eyes, which measures your IOP. An elevated IOP can be a sign of glaucoma, a condition where your pressure is high enough that it risks damaging your optic nerve and causing subsequent loss of peripheral vision.

My new ophthalmologist in Winnipeg not only quickly identified the viral infection, but the accompanying inflammation of my iris and a skyrocketing IOP that indicated I had developed glaucoma.

I was 33 years old, with a newborn. He told me I was one of his youngest patients, by decades. It wasn't much comfort, but it was something I heard again and again over a journey that has now lasted almost fifteen years.

It took me some time to understand that what had happened to me was not a "one off" medical incident. I wanted to believe it was something that would go away, be fixed or cured, but I didn't understand the nature of chronic disease back then. I had always been healthy and had never had to deal with something that would go away for weeks or months or even years and then return, but suddenly I had a chronic disease.

It has been a long journey. My "eye guy" in Winnipeg and I became pals, treating my disease with medications as best we could, keeping it at bay with a variety of eye drops. I was lulled into a false sense of security for a long time, even after I moved to Fort McMurray and found myself needing to travel once more to see an ophthalmologist in Edmonton as my new home once again did not have a specialist in this field (a travesty in my opinion and one that will cause people to lose their sight just as I did 15 years ago). The fight has always been to preserve what vision remains in that eye, and it is so frustrating as we know that without the corneal scarring I would be able to see quite well. The scarring is like looking through a film of vaseline, making the world a blurry place, and intense enough that I can make out shapes and not much more.

I found a new "eye guy" in Edmonton, and on my second visit he referred me to a glaucoma specialist at the Royal Alex Hospital as he was concerned about my IOP. The virus had been quiet for some time, as had the inflammation of the iris, but the IOP had been steadily creeping up and it was a worry.

I saw Doctor Casey in his little office at the Royal Alex for the very first time thinking it would be a routine visit. I was a little shocked when he said I would need eye surgery to deal with the glaucoma, because it had reached levels that were "a little high". I asked him when I needed to return for the surgery, thinking I had weeks to prepare, and was stunned when he gently told me that this was a true emergency, and that I would be in the surgical suite the next day. He said he was sorry when he told me, telling me that he hated doing so when we had just met and I hadn't had time to develop trust and faith in him, but that there was no choice.

I trusted him instantly. Within moments I was on an IV of a drug called Diamox to reduce the pressure in my eye, and the next day I was in surgery with Dr. Casey, wide awake but with a frozen face, and we joked and talked the entire time as he performed an emergency surgery in an attempt to save my optic nerve from certain blindness as my IOP, which in normal eyes is under 20, had soared to almost 60 and levels he admitted even he had rarely seen in someone my age.

We were on a journey again, my eye, my eye doc and myself, and Dr. Casey and I became not just physician and patient but friends as I travelled to see him regularly. On one of my first visits I arrived with a Starbucks in my hand and he looked at it wistfully, saying he rarely got out to pick up a coffee, and so when I left I went and got him one and took it back to his nurses to give to him. After that I showed up at every appointment with a coffee in each hand, one for him and one for me, and together he and I would look to tame the angry beast that is my left eye, finally calming it into submission for many years.

I was devastated when Dr. Casey died a few years ago, because he was not only the best physician I had ever known but one of the kindest people. Our appointments had been filled with jokes and laughter about Fort McMurray (he had family living here) and we would laugh about white pick-up trucks and "the Wild West". More than that, though, I trusted him implicitly when it came to my chronic eye disease because he knew me and he knew it and he and I both knew that his surgery had saved me from even more grief as it had been quite successful in controlling the glaucoma.

The thing about chronic disease is that on occasion you can even forget for awhile that you have it. Oh, I have reminders in an eye that droops a little as a result of the surgery, and that is often red due to the weakened blood vessels it holds. For months or years at a time, though, I can forget that it is even there, and that the virus is lurking inside me - right until it flares up, like it did this week.

I spent some time outdoors in the bright sun on the weekend, a known trigger for those who experience this virus. The sun has triggered an outbreak for me once before, just after I returned from Florida, and so I should have thought to be more cautious but my last viral experience was years ago and so I was reckless. By Tuesday my left eye, which had been quiet for many, many years, was angry and red and inflamed. The beast was back.

I was worried the glaucoma surgery may have failed, as Dr. Casey had warned me it could one day and might need to be repeated, although he said by then perhaps there would be better treatments available, too. I was actually relieved to find it was simply a recurrence of the virus, once again flashing across my cornea and causing redness and potentially even more scarring, although little pain as after 15 years of problems my eye is almost completely impervious to that sensation. And so here I am at home, once again using antiviral eye drops, avoiding bright lights and hoping that this regime as provided by my optometrist is enough and I can avoid a trip to Edmonton and another "eye guy".

Someone asked me recently why I have never written about my eye disease or my journey with chronic illness. I suppose I never thought of doing it, never thought it would be of interest to anyone and it is quite a personal journey, too, as it has often been fraught with tears and fears. It is a point of weakness and vulnerability for me, a part of my life that I cannot control and so I tend to keep it close and tucked away, although as it was pointed out to me perhaps that is why so many people suffer from chronic disease in silence, and that perhaps sharing it would allow others to know they are not alone.

There is a lot to be written about suffering from chronic illness in a remote location, too, as the need to travel to specialists adds significant stress to an already difficult ordeal. I find the lack of a full-time ophthalmologist in our community disturbing given our population size, and I intend to pursue that lack of services with Alberta Health Services as opthalmic issues are hardly rare and I suspect thousands of residents of our region are travelling to access these services when they could be securing them closer to home, but I will write more of that in the future as I try to learn more about medical specialities in remote areas.

And so that is the story of my left eye. It isn't quite as gripping as "My Left Foot", the story Daniel Day-Lewis made famous in the movie of that name, but it has gripped me for the last fifteen years, and left me with a new understanding of the nature of chronic illness and the frailty of the human body. I have so many friends who endure chronic disease far worse than mine - lupus, heart disease, diabetes, and more - and yet the one thing we all have in common is that we are involved in a delicate dance with our disease, some days the steps going well and the dance flowing and other days the disease tripping us up and reminding us that the disease has set the tempo, not us. It can be a frustrating dance indeed as most of us like to lead and not follow, and yet in this case we are at the mercy of our partner. It is a dance, though, where you learn new steps and begin to develop a fuller understanding of yourself and what it means to be human, as you explore a world you might not have chosen but that for whatever reason has chosen you. Living with chronic disease is no different than just living in many ways - it is just a slightly different dance, with unusual twists, dips and turns along the way. The funny thing is how well you can learn to dance when you need to.

1 comment:

  1. This is great! Thank you for this! I live with severe chronic insomnia and arthritis in my spine. While my conditions may not be as serious as heart disease or lupus, it still affects me frequently and has a huge impact on my quality of life. This post, especially the last paragraph, is one of the best descriptions I have ever read of living with chronic illness. I will be sharing this with everyone I know!