Tag: wet macular degeneration

On the Eve of Eye Treatment Days

September 7, 2021 / jeanne / 3 Comments

a drawer filled with dark shades to protect eyes after dilation

my growing collection of dilation shades

As the day before Wet Macular Eye Treatment Day finds its way into the higher numbers on the clock, the voices in my head grow louder, speaking through clenched teeth:
”What if it hurt tomorrow?”
”What if the hemorrhage has grown larger?”
“What if he nicks a blood vessel again?”
”What if the needle slips, and I go completely blind?”
”What if my eye gets skewered on the needle and comes completely out of its socket?”

And so on and so on. I consider developing a headache, an upset stomach, lose a limb – anything that would be considered an excused absence from tomorrow’s treatment.

It’s exhausting doing battle with my brain.

Eventually and at just the right time, the sure, quiet voice of the Wise Woman on the Committee of Jeanne speaks in her soft, calm voice, her words giving my brain laryngitis and my tattered spirit a balm of comfort. “Jeanne, Bubbles, Sugar. You are strong Enough to handle anything that comes tomorrow or any other day, and besides, you’re not doing this alone. People near and far are cheering you on, lending you support, propping you up, whispering fortifications to get you through. And if all that isn’t enough, you are smart enough,” she says with a twinkle in her tone, “to ask the doctor right out loud to pretty please not pluck your eyeball out when he removes the needle.”

A small chortle makes its way to the surface and falls out of my mouth.
A full-body exhale comes.

I turn a corner and begin to imagine the relief that will consume my body tomorrow afternoon when all is said and done, the delicious sleep that will overtake me before we leave the parking lot, the swell of gratitude I already feel for the thousands of supportive, encouraging messages, the candles lit in my name, the photos and comments that leave me laughing right out loud, all woven into a shawl of kindness and caring that I keep wrapped tightly around me. To all who walk this path alongside me in one way or another, thank you. Your presence is the best medicine ever, and I thank you for being there with me tomorrow and every Treatment Day yet to come.

Loving Kindness for the Win

July 20, 2020 / jeanne / 7 Comments

My growing collection of eye shades that might one day find their way into a quilt.

Wednesday, July 9, my 16th eye treatment. To say that treatments 14 and 15 were not good is a textbook example of understatement. I’m accustomed to the roller coaster – at least as accustomed one can get with eyesight and emotions going up and down. Such is the nature of being in a clinical trial. My vision kept sliding down the mountain, though. The big black thumbprint in the center of my vision came back. Telephone poles curved like mountain roads. Letters ducked and danced. My emotional complexion plummeted. I withdrew. Tucked in. Hid.

I got up early on Treatment Day, did yoga, meditated by the falls, and just before we left, I did something I hadn’t done in two months: I posted on Instagram and Facebook asking for good thoughts, healing energy, prayers.

Four hours later my name was called, and I took my seat before the dreaded Snellen chart. Just the thought of that dreaded chart usually sends me into shallow breaths and glistening . . . sweat. It’s how every treatment begins – auditioning this lens then that lens then reading the letters out loud. It’s usually a slow, laborious process, as the letters become shy and duck out of sight in a game of hide and seek that I seldom win.

But that Wednesday . . . that 16th treatment . . . oh my goodness.

There was no glistening.
No shallow breathing.
No fidgeting.

I felt this delicious, multi-colored coat of calm and loving kindness wrap itself around me with arms and whispers and goodness from around the world. I read Mr. Snellen’s letters, and I read them with confidence and with speed.

Denise, my Main Handler came to fetch me, and when Julia told her about my confident reading – about my 19 NEW LETTERS* – they joined in my cheering and crying. There were tears of relief that this part of the treatment day’s events was over; gladness that I’d read 19 NEW LETTERS, and gratitude – oh my goodness, the deep, overflowing vat gratitude. How will I ever adequately thank y’all for creating that web, that hammock, that blanket, that coat of loving kindness? For now, all I can think to do is say “Thank you” for holding me in the best remedy ever . . .

. . . and ask if you’d mind doing an encore on Wednesday, August 5?

(*Important note: There’s no guarantee that those 19 letters will be visible on August 5, but they’re here now, and for now, we rejoice!)

Treatment #13: Will the Eyes Have It?

April 9, 2020 / jeanne / 3 Comments

woman wearing hat and face mask

Wednesday, 08 April 2020, Day 29 of Sheltering-in-Place: Today is Eye Treatment #13, and as I both expected and feared, my vision has declined. Today I lost 10 letters. That’s almost all the letters I’ve gained over the last year. Despite knowing the erosion of vision since the last visit, I am sad, bereft, and discouraged. I’ll take it easy tomorrow, then bounce back into the studio on Friday and get back to work making face masks. Thank y’all for your constant loving support.

Eye Treatment #11

January 20, 2020 / jeanne / 0 Comments

A stack of 13 books

I am either deeply rooted in denial or I’m the new poster girl for eternal optimism. In the past week, I checked out these books from our local library.

Another stack of books
And bought these books at the library’s used book sale two days ago,

Yesterday was Eye Treatment #11, and tests showed there was more fluid (bad) but no blood (good). There was the expected deterioration in vision because it’s been 10 weeks since my last treatment, and there are usually no more than 4 weeks between injections. This time, a first. My eyeball hurt for 48 hours. I couldn’t roll my eyes, move them side to side, or blink without flinching and wincing. All I wanted to do was sleep, and that was impossible because every time my eyes moved, sharp pains woke me up. I don’t know if you’ve tried it or not, but it’s hard to cradle and impossible to immobilize your eyeballs.

It usually takes about a week before the I notice improved vision, and I can’t wait because when I went back last week, the decline was becoming drastic. I turned on all (and I do mean all) the lights in a room and still there wasn’t enough. I wore the same clothes day after day because I couldn’t see well enough to distinguish cut and color. The dreaded black “thumbprint” didn’t come position itself in the center of my sight, but its predecessor, the gray veil, was back and darkening. Everything sported curves and waves, and even the most gigantic fonts could only be seen, but only as smudges. Couldn’t tell numbers from letters.

Two more days till the one week mark is here, though, so my hopefulness swells, and I am deeply, hugely, ginormously thankful for your continued support.

Do I feel stupid or regret lining up all these books to read? Not at all, though I do wonder why the sudden urge to hoard books. Perhaps it’s because my vision was so much improved in November that I grew false confidence. Or maybe it’s determination. I don’t look for the white flag yet, though. I have waaaaay too many ideas, art quilts to stitch, books to write, books to make, and books to read (of course).

And how ‘bout we make a deal? Any if you find typos here, please remember my wet macular degeneration and treat them as some kind of crossword puzzle on an adventure. Or blame it on auto-spell.

The Eyes Have It . . . For Now

April 7, 2019 / jeanne / 1 Comment

shades used after eye dilation sewn to strips of green fabric woven together adorned with multi-colored stitches

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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