I recently received a message from a friend replying privately to one of my facebook posts. She (a) expressed surprise that I continue to have issues with my vision, and (b) admonished me to accept it and move on. It occurs to me that perhaps I wasn’t very clear in my posts and in my earlier explanation. Let’s see if this post helps . . .
(a) It’s not so much a question of how rapidly the wet macular progresses as it is how much time it takes the treatments to accumulate. For the rest of my life, I will receive monthly injections in my eye. I was told from the beginning that it will take at least three treatments – maybe more – before I notice any improvement in vision. In fact, that’s the very thing the clinical trial I’m in investigates: how long will this medication retain its effectiveness before needing a boost.
(b) Hit by a car in downtown Atlanta on Friday, back in the office the following Monday. Emergency Caesarean delivery with minimal anesthesia (It was offered, I refused to inhale.), up curling my hair two days later so I didn’t look such a fright. Second Caesarean delivery 14 months later, back at home the next morning to tend my newborn and 14 month old. After my first two eye treatments, we went out to lunch and ran errands on the way home. You get the picture. I am a buck-up-and-carry-on-it-could-be-worse-so-what-are-you-complaining-about kind of girl.
However, two things happened on May 21, 2019 – the day of my second treatment – that shoved me into the pit of despair. The second one was the office visit for my treatment. Usually affable, kind, and efficient to a person, on May 21 everybody got up late or sat in traffic on the way to work or I don’t know what else, but that visit was off the rails in every way it could go off, and I felt the effects mentally, emotionally, and physically. I cried the entire five hours. Instead of leaving the office confident that I can live with this, I left feeling lower than a snake’s belly. That was only 23 days ago, and it is a big thing to adjust to low vision as well as the first time I’ve allowed myself to grieve over something that changes my life. And besides, as we all know: grief doesn’t wear a watch.
2. The World Through My Eyes
Closeup of my eye art quilt. The eyeball is made of white gauze, and the iris is a photo (printed on fabric) of what things look like to me now.
This is a closeup of the art quilt I created for the Sacred Threads Eye Contact Exhibit. This is my artist statement written to explain this odd-looking piece that will be surrounded by unimaginably beautiful eyes.
The world comes to me through veils of gray. I know the red dirt I walk on is red only because it has always been red. Entire forests blend into one great big tree. Everything dies behind splotches of black. Nothing is straight. Trees bend. Telephone poles bend. Road signs bend. “Our windshield is defective,” I tell my husband. Details elude me. I can make our faces, but not features. I see books, but the words are smudges. I can pick up the phone and talk, but I can’t read the numbers to initiate the call.
On April 3, I am diagnosed with wet macular degeneration. On April 9 I am told that I see bad good enough to take part in a clinical trial. On April 17 I have my first treatment. For 2 years and 3 months, I will make the 1 hour and 45 minutes drive to Asheville to the retina specialist once a month for a series of tests lasting 4.5 to 5 hours. The visit begins with the visual acuity test and culminates with an injection in my eye.
Thanks to the visual acuity tests, I now know the word disheartening intimately. as I am unable to read even the largest letters on the top row of the chart. Though I enter the room feeling optimistic an hopeful, I leave in tears with drooping shoulders dragging my spirit behind me.
Much energy is spent on struggle.
I struggle to decipher what I’m looking at; to not be a burden to people who must take me everywhere I need to go; to find upbeat ways to tell both strangers and loved ones of my low vision when requesting the help I need for the simplest things, like finding my way to the gate at the airport then finding my assigned row/seat on the plane.
I eat more cheeseburgers and fries now, finding menus impossible to read.
I struggle to not scold myself or be embarrassed when I – an adult – ask for words of encouragement from those administering the tests at the eye doctor’s office. When they focus more on the procedure the on me, the patient, I remind them that my inner kindergartner responds quite well to words like “good” and “yay” and “you’re doing great.”
When having conversations with myself and others, I struggle to remain positive and to construct sentences containing portals of hope and possibility while not denying my invisible disability.
I read a book of poems that makes me laugh out loud, and while I startle at the sound of my laughter, I remember what I’ve told myself on every trip around the sun: If I can laugh at it, I can live with it. Welcome back, laugher. I’ve missed you.
3. Looking Forward
My new friend Virginia is a font of encouragement, hope, and useful information. Thanks to her example and encouragement, beginning this month, I spend the day before a treatment resting and hydrating and I spend the 2-3 days after the treatment – say it with me – resting and hydrating. Virginia reminded me that my eyes are special and deserve a little TLC.
Jeanne in her new Eye Hat on her way to her third eye treatment
I bought myself an Eye Hat then added – wait for it – a dahlia to smile it up a little.
Andy and the Railing He Build Beside our Waterfall
And as if all that isn’t enough, while I was with our daughter last week, The Engineer made use of downed trees and limbs to build a railing so I can feel safe when walking up to the top of our beloved waterfall.
Oh, and never one to wear the victim role well, last week I penned and sent an email to the clinical trial manager (I call her my handler), outlining what went wrong last time and begging for help in getting us back to the quality of care I received on my first visit. I made it light hearted, but not so much so that it buried the seriousness of my words. It felt good to be proactive for myself, express what I need, and put myself in the process of scheduling future visits (something that hasn’t happened before now.
4. Third Time’s the Charm
Today is my third eye treatment. Any positive, healing, supportive, encouragement words, energy, prayers, smoke signals will be mutely appreciated.