It’s been almost four months now since I woke up with incredible pain in my left eye. A lot has changed in those four months. Through it all, God has been faithful to me, my family, and to Wellspring as our course took a 180 degree turn upon diagnosis in early January.
I have been somewhat reticent to blog about my condition over the past couple of months as I wanted the focus to shift away from me and shift toward the well-being of my family as they first prepared to leave Rwanda and then as we all have transitioned back to life in Canada. Still, wherever we go, whenever we open an e-mail, or when we answer the phone, the first question asked is, “How is Mark’s eye?” We have been consistently in awe as to how many people have followed our story over the last eighteen months, generally either through directly or indirectly the blog. The power of social media has not been lost on us, and it has worked to our advantage as so many people have kept us and, more specifically, my eye, in their prayers. So much so, that I’m thinking about setting up a Twitter account and tweeting daily eye updates (okay, not really).
It’s high time our blog readers got a bit more of a detailed description of what exactly is going on inside my eye. As you read this, keep in my mind that I am not a corneal specialist (although my new best friend is one) and the information I am passing along is based on my understanding of what I have been told at my doctor’s appointments and also on my own internet research.
The acanthamoeba parasite is a single-celled organism that normally feeds on bacteria and yeast. It does not usually need a host, but if it finds one, its appetite becomes voracious. Lucky for my parasitic friend, I was the perfect host. First, living in Rwanda, I likely gave the parasite many chances to stop by for a visit. Unclean water is generally where the parasite hangs out, so we could easily have had our first blind date (pun intended) in our bathroom shower, swimming in Lake Kivu, standing under the brown waterfall (photos seen on earlier blog entry), or even swimming at local hotel swimming pool.
After that initial meeting, I remained very hospitable to my guest. Substandard contact lens care – wearing my daily wear lenses for too many days and not completely changing my solution everyday – allowed the parasite to create a comfortable home for itself. For good measure, once the intense pain and light sensitivity arrived on that fateful November morning, I made him feel even more at home by wearing my air travel blindfold, thereby ensuring my visitor had a warm, moist and cozy existence.
Acanthamoeba was first established as a cause of human disease in the 1970s, and the parasite can cause three clinical syndromes, based on how the parasite gains entry into the human body: granulomatous amebic encephalitis or GAE (the brain), disseminated granulomatous amoebic disease (skin, sinus, and pulmonary infections), and acanthamoeba keratitis (the eye). Fortunately for me, the acanthamoeba parasite entered door number three. While acanthamoeba keratitis can be vision threatening, GAE is usually fatal (nearly 100% of the time). In none of my research have I found that the acanthamoeba in my eye could eat its way through my eye and into my brain, so rest assured I shouldn’t be pushing up daisies anytime soon.
As for now, my last appointment with my corneal specialist was on February 21st. Overall, he continues to use words and phrases like good progress, ahead of schedule, and the body of a world-class athlete (well, maybe not the last one). The parasite has moved from the active stage (trophozoite) where it was mobile and consuming bacteria – let’s call this the “turkey dinner with all the fixins” stage – to the cyst stage where the trophozoites go into dormancy and form double walled cysts which are incredibly resistant to methods of eradication – let’s call this the “long nap after turkey dinner” stage. The disturbing part of the dormancy stage is that the acanthamoeba parasite may live in my cornea for a very long time, if not forever. Any amount of freezing, heating, and irradiation will not make it go away, and would do more damage to my eye than good. A complete corneal transplant could offer more hope of a “Bon Voyage” party but is far more invasive and is a last resort, according to my specialist.
As the parasite encases itself into these cysts, it leaves scarring, and as we all know, scars usually stick around for life. As the parasite has transitioned between phases and the scarring has been happening, the amount of vision in my eye has bounced all over the map. One week, I feel like my vision has improved substantially, and the next week, I feel like it has taken two steps back. To avoid as much long-term damage as possible, I am taking steroid drops to slow down the inflammation while also continuing to take my other drops to attack the parasite. It’s one big balancing act. The positive news is that I’m now down to fourteen drops a day and only two drops in the middle of the night as I am slowly being weaned off the drops so that the doctors can see how the parasite reacts. Still, the reality is that I may be on one or more of the drops for a long time to keep the parasite sleepy and inactive.
To get a two-minute snapshot of my unwelcome guest, you can click here to watch a short two-minute video.
As for life in general, I am feeling very healthy otherwise. The only symptom remains blurriness in the eye which causes the odd headache. For those of who you remember me walking around with my eye closed for months, the constant winking is likely in the past. I present like a fairly normal person now (insert own joke here), and if someone doesn’t know about my condition, they are unlikely to notice anything is amiss. (On a side note, I recently watched an old Seinfeld episode where George gets some citrus pulp in his eye and can’t stop winking at people, so no one believes anything he is saying. Crazy hijinks ensue!)
I started driving again a couple of weeks ago. So far, it’s only been short trips in town, but I’m gaining confidence as the days go by. I’m also hoping to start working after the school district’s spring break. For now, it will be filling in for administrators or substitute teaching. I am very much looking forward to getting back into schools again, and Tracey likely wouldn’t mind having me out of the house once in awhile. In the meantime, I have been doing a bit of work for Wellspring from afar. At first, we thought we’d be making weekly sojourns to Vancouver, but for now, they have been extended to monthly appointments, so that has been an answer to prayer as we try to regain some regular routines in our lives.
My spirits are good, and while I still question why God would allow a one-celled organism to turn our lives upside down, I don’t have any lingering bitterness or regrets. As others are doing, we continue to pray for full healing and full vision to return, but we also trust God that He will use the wisdom of my doctors to bring about my recovery.
We are so grateful for your continued prayers and ask you to keep praying for a miracle.
Tags: acanthamoeba, eye, God