Mindfulness – in practice

I couldn’t have seen it coming. Literally.  The last few months have had their share of twists and turns.

I’ve been diagnosed with acute idiopathic bilateral neuro retinitis.  It’s a mouthful of words which translate to a sudden onset of inflammation of the optic nerve due to an unknown cause.

Neuro retinitis is rare; even more so when it affects both eyes.  The onset can be the result of  a virus which may help explain how it happened to me.  My vision started to change on the heels of COVID.

I first noticed it one morning when  the sun was so bright that I had to squint to back my car out of a parking spot. Part of the vision in my left eye was gray.  My mother’s warning to never look directly at the sun flashed through my mind. “You’ll go blind,” she’d said countless times when I was growing up. Had she been right? Of course, I don’t believe all the broad statements my mother made but she is the reason I don’t feel confident cooking anything pork.  I might get worms.

When I  mentioned my wonky vision to Darrell, I wasn’t expecting the optometrist in him to resurface.  After all, he’d sold his practice years before.  When I suggested putting off a visit to the eye-doctor because of plans to babysit the following day, he went calmly, nearly sweetly, ballistic.

The next morning, I was in the opthamologist’s chair, at the neuro-opthamalogist the day after that.  I was thoroughly questioned, eye-dropeed, scanned, and tested for six hours which made me feel like I was losing my mind right along with my vision.

Nine tubes of blood followed and an MRI of my head was scheduled.  Among the suspects were lupus, syphillus, and a brain tumor.  Thankfully, none of these turned out to be the diagnosis.

Seven months later the prognosis is good.  The inflammation has subsided leaving proteins and lipids in my eye that, fingers crossed, will be reabsorbed and allow my vision to return to normal over the next year.

A year seems so long when there is nothing to do but wait. A new prescription won’t help with blindspots that seem to dapple the light.  They’re the reason I wasn’t surprised when my son asked me why on Earth I had left just one half of one small tomato on my dinner plate. Trust me, I’d have eaten it if I’d seen it.

It’s the small things like the tomato that challenge me. Small things like print, too. Always a voracious reader who checked out stacks of books on each library visit, I now check them out one at a time: one large print novel that I navigate through slowly.

Being able to see finer details also brought my pottery and watercoloring to a stifled halt though not all my creative outlets were gone.  I still sat at the kitchen table coloring with my grandkids who didn’t seem to mind that I was the one going mostly out of the lines.  We staged art shows on the porch anyway.

It hasn’t all been dire (though I have leaned on Ben & Jerry countless times to perk me up.)  When I showed Darrell a photo I’d taken of the loons on Limekiln Lake he gently, matter-of-factly  told me there were no loons in the picture.  What could I do but laugh and try again? Shit happens. Missing the loons wasn’t nearly as bad as finding out I had showered in the men’s bathroom at camp because I’d misread the sign.

In the face of so many losses, my morning meditation has deepened to include more intentional self-compassion practices.  Before my vision loss I had been watercoloring what I called May-You-Bees; small cards with offerings of loving-kindness to give away to friends.  With phrases like May-you-be  compassionate with what is, just as it is, in the moment, they became life-lines for me.

I’ve learned that self-compassion includes asking for help. Sometimes requests are simple. “Can you help me read this ingredient list?” but it may turn out to be a kindness to others as well. Not asking has resulted in Darrell circling blocks looking for house numbers that don’t exist because I’ve read an address wrong.  Luckily, his sense of humor usually prevails.

Friends and family have stepped in to offer support around everything from driving long distances to editing the content I post. They’ve also helped keep my creative projects alive.  Until my vision clears, Darrell will finish the pottery ornaments I made before the vision loss by adding wires to them. My friend’s niece, Molly,  digitized my watercolor blessings and helped bring the May-you-bees deck to life so others could use the cards, too.

I have hesitated to share this part of my journey, not because I think there’s something wrong with what’s happening, but because other people sometimes do.  I don’t feel like I need to hear, “I’m sorry” when the truth is that while my vision is dappled so many other things have become perfectly clear.  Kindness, for example, matters. It includes being gentle with myself and others.  It includes being willing to offer, and accept, help. When my vision does come back into full focus I hope I don’t lose sight of that.  I hope I’m more generous with offers of, “How can I help?”  and will start by donating profits from May-you-bees to help provide food for those who might otherwise go hungry.

There is a light on the horizon.  I can almost see it.  In tiny increments, my vision is getting better.  My text messages still appear in huge font but I can decipher some regular print if the light is just right and the book angled just so.  Still, I suppose until my vision is completely reliable, it’s probably best to have Darrell double-check the shower signs next time we’re at  camp!

UPDATE:  As it turned out my vision did not improve though I remain upbeat about what I can see and how well I can still read despite the challenges that text can pose.  In the end I have lost all central vision in my left eye; some peripheral vision in my right.  I can see my grandchildren’s faces.  I can watch the sunrise.  I can read novels (albeit slowly and with some missed words).  Yes, I can drive.  Safely.  I see life differently now.  I see how precious life is through a much clearer lens.

*****

You can read more about life around our mindful homestead (before the vision loss!) here:

Self-care: A Balancing Act

It’s Just a Pie

Just Passing Through

Find us on Facebook:

Kneading Life/Mindful Homesteaders

May You Bees (it’s brand new…a place we’re keeping for spreading kindness! and compassion!)