I begin to need more light, more contrast. Then there is not enough light or contrast or magnification. I cannot read emails, magazines, menus, road signs. I notice that things seem to bend. Hard, immovable things like trees and boards on the back of trucks. Initially blaming windshields, I flick that excuse aside when realizing that every windshield in every car, truck, even the rental car I rode in at the University of Central Missouri could not be made of defective wavy glass.
Big gray shapes begin hogging the view from my left eye, making it impossible to see anything smaller than the sky. True, the shapes are interesting in form, true, I sketch them out with thoughts of stitching them One Day, but mostly they are annoying. I can’t see through or around them.
At the 6-week mark with no improvement, things become alarming.
Monday, 4/1/2019
With whispers of “in sickness and in health” tickling my ears, I celebrate the 46th anniversary of the day The Engineer and I became engaged by moving “get eyes checked” to the pole position on my substantial to do list. I begin our rare ten consecutive days at home by calling a nearby ophthalmologist I find online. As the scheduler searches for an open widow, she says, “Oh, we’ve just had a cancellation for tomorrow morning at 10:30.” I take it.
Tuesday, 4/2/2019
This morning I draw the Destroyer Oracle Card: “Releasing what is potentially destructive. Preparing for new life.”
Prepared for a diagnosis of cataracts and actually looking forward to being treated because to a person, everybody who’s had cataract surgery tells me they’ve never been able to see better. They even get to design their own vision, most choosing a lens for distance and inexpensive, over-the-counter reader glasses for reading, computer, and hobby work. I have a plan. All will be well.
Not being able to see is exhausting.
Not to mention frustrating.
The ophthalmologist doesn’t follow my script. Scans of my left eye show a lot of blood, so I am met not with a choice of replacement lenses, but with a referral to a retinal specialist. As the opthamologist’s scheduler searches for the next available appointment, she says, “Huh. There’s just been a cancellation tomorrow at 1:30.”
Shaken, I take the cancellations as a sign. The retinal specialist will scratch his head and wonder how this ophthalmologist managed to get my test results mixed up with someone else’s or come up with such a creative diagnosis.
Wednesday, 4/3/2019
This morning I draw the Beggar oracle card: “Confronts empowerment at the level of physical survival. Awakens the spiritual authority of humility, compassion, and self-esteem.”
Two years ago, I presented my daughter with a quilt top and a promise to finish it asap. Ever since, she chides me lovingly, wondering where she finds “asap” on the calendar and wondering when will she enjoy sleeping under it. Before presenting myself at the retinal specialist’s office, we purchase threads for that very quilt. I’m not being morbid, I simply resolve to amp up and bring to cloth all the images I carry around on the inside.
I go through a repeat of all the tests from the day before and some new ones at the retinal specialist’s office, and while my visual acuity is much improved in the past 24 hours. there is more blood. In the next 12 minutes, we move quickly from tests to the dreaded “wet macular degeneration” to talk of me being in a clinical trial to actually meeting with the clinical trial manager.
Unsure if the rush is because of my vision, the progression of the disease, or of getting me in the clinical trial. I leave the office with my head spinning and my heart reeling.
Thursday morning, 4/4/2019: The Day After
I wake and am able to see better than I have been in over a month. Ignoring the images I was shown yesterday, I think thoughts from the denial column like “Maybe they’re wrong” and “Maybe my eyes were just tired”. I give myself a day of slow ease, a day that quickly becomes filled with emails, phone calls, text messages. Thanks to the efforts of my brother-in-law, I get a second opinion and decided to go ahead and apply to be in the clinical trial. The screening will the place Tuesday morning, 4/9/2019.
“Your imagination is your super power.”
My friend Joyce texts me this reminder, and as we both know and have talked about before, there’s a flip side to imagination: fear. “Fear comes with imagination,” Thomas Harris writes in Red Dragon. “It’s the price of imagination.” Imagination is not entirely a benevolent creative tool. Imagination has a torturous side, cluing us into the worst that could happen. “Fear is often just the imagination taking a wrong turn,” writes Mary Ruefle in her chapbook, On Imagination. True to form, my imagination glides from denial into fearful overdrive, flapping around unchecked, frantically shouting “Sure, you can write without seeing, but how will you live if you can’t stitch?”
Cue my internal chorus
With denial and fear beginning to fade, my internal chorus warms up and begins chanting their ever-familiar refrains of “You ought to be ashamed of yourself because you know good and well that people are dealing with much worse” and admonitions to “stop that pity party right this minute.” Continuing my plan to honor what comes, I listen to the chorus then bid it shush, pointing out that I have never and will not start now using other people’s circumstances as comparisons to shore myself up and feel better about my situation. My diagnosis doesn’t diminish their pain, and I refuse to use their pain in an attempt to diminish mine.
Having ridden this beautiful rock around the sun quite a few times, I don’t throw myself a pity party, I simply take the emotions as they come. Fear. Sorrow. Embarrassment. A pinch of Pity. They come, we talk, they leave. No angst, no wallowing, and fortunately, no overstaying their welcome.
Without apology, I delve into my secret stash of chocolate. More than once.
Friday, 4/5/2019: The Day After The Day After
Knowing that things are piling up in my absence from the computer, we go into town and buy me a pair of reader glasses that I wear behind my prescription reading glasses, and while I can see somewhat better, I still struggle to make out even the enlarged words on the screen, tire quickly, and take frequent eye rest breaks. And so it continues for now.
Note: “I’m going to rest my eyes a bit,” my grandparents used to tell me. Silly me, I thought they were using code for “I’m gonna’ take a nap.”
Onward
If you are part of or wanting to become part of The 70273 Project Tribe and are waiting on quilt labels, bundles, a reply to your email, or something else, please accept my apologies for my tardiness. It’s now Sunday, 07 April 2019, and I’ve been working on this post for several days. Taking the aforementioned eye rest breaks take time, Reading a screen filled with words in 40-60 point fonts takes time, too, as there’s room for no more than 5 words on the screen at a time. That one caught me by surprise. I will get my daughter Alison to proof this (she surprised me by coming up to spend several days with me!), mash the publish button, rest my eyes, then move into the studio to begin checking in blocks and quilts. Replies to emails may have to wait till tomorrow. We’ll see.
The 70273 Project is an international endeavor, amazing in the magnitude of geography, numbers of people, and kindness. With my whole heart, I thank y’all for using your imagination as a force of good – for showing me the patience, understanding, kindness, and compassion you continue to show those we commemorate. Your good wishes comfort me, your continued petitions for healing encourage me, and stories from your personal experience fortify me.
Updates to follow, I promise.
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