Life will knock you on your ass sometimes. Out of the blue, on a sunny day, suddenly there you are—leveled by whatever it is. Getting back up is a struggle. It takes time and it hurts and it’s scary and even from your knees with bleary eyes it’s easy to see that the life you’re coming back to isn’t the same one you went down in.
Macular degeneration was one of those for me–completely unexpectable—TKO. Going (hopefully very) slowly blind was nowhere near my list of things to watch out for. I went down hard and stayed down awhile–angry, sad, depressed, desperate. Now, I’m working my way through those things (for neither the first time, nor the last) and back to my feet in a new life.
A life that brings with it a whole new way of eating, some serious sunglasses, a wealth of anxiety about vision loss, a lifetime of follow-up appointments, and the knowledge that my future includes someday losing my central vision and, with it, a good deal of my independence.
But it’s worth it.
I love it here.
There’s horses and whiskey and margaritas. I love laughing and lipstick and guiding my babies as they grow. I love the woods and the mountains, misty mornings, and wild thunderstorms. Music, poetry, snow-melt river water running through my hair, and warm sun on my skin.
My man, my friends, and my family are funny as all Hell and have kept me company, laughing or crying, through every nightmare I’ve ever had to face.
And I’m fascinated by the strange muddle of humanity I’m part of—clashing and connecting, messily growing into what we’ll all be and do.
Life’s wellspring of treasures is as infinite as our capacity to endure it’s horrors. And when I’m having trouble finding my feet in the darkest dark I keep at it, not because I have to or need to or should or can but, because I want to;
A couple of weeks ago I had a routine eye appointment and got some bad news about my eyes. I have serious signs of dry, macular degeneration in both eyes. Macular degeneration . . . sucks. I am way too young for it and have none of the risk factors, but the bottom line is, it’s likely I’ll be legally blind within 10 years. There is no cure or real treatment and no way to know how fast or slow it will go, just diet adjustments and vitamins that can sometimes slow the progression.
This news was overwhelming. I had and still have moments of suffocating anxiety about losing my independence and not being able to fully take care of my children/keep them safe. I am sometimes crushed under the weight of the knowledge that a day will come when I’m not able to clearly see their faces as they grow into adults, not able to see my daughter’s art, and not able to read or knit or drive . . .
Along with those dark thoughts, I’ve also noticed that every vein on every leaf, every grit in the cement sidewalk, every facet of the frost on every blade of grass, every hair on my horses, every minute detail of my surroundings has become a tiny miracle to me. I don’t try to see every little thing, but since that appointment, I just do.
The week before last was hard. I wasn’t hungry, I wanted to cry all the time, everyone was sick, and in the midst of the bare minimum I had to do to keep everyone alive and clean and fed, I had to plow through having the future I’ve always imagined would be mine ripped away in an instant and try to wrap my mind around what’s coming instead. To stay sane, I found myself mentally putting things in categories as I moved through my day: “Things I can Still do Once I lose my Central Vision, Things I can’t Do Anymore Once I Lose my Central Vision, and Things I can Still do with Some Form of Help Once I Lose my Central Vision.” I imagined how things will need to be moved around so I can do as much as possible for as long as possible. I set a schedule of never pausing during the day (lest I not be able to get back up and continue) and breaking down at night after everyone was in bed, and quickly exhausted myself on every level.
But this past week, after forcing a few good night’s sleeps on myself and while deep breathing through a mini-panic attack about it all, the realization came that right now I’m in the early stage and my vision is still correctable to 20/20. I can still do and see all the things. No doubt, there are dark days ahead, but now is not the time to grieve, now is the time to savor.
Going with my man for his first flying lesson and watching his eyes light up with pure, unadulterated glee when he turned the key and the engine fired up, taking my little horse for some play time in the round pen, making time to get back to my (rather long) reading list, and soaking up the sight of my children in a way I don’t think I could have when I assumed my vision would always be clear: these are the things I am focusing on (literally and figuratively, lol) now.
I’m not quite to the end of my thirties yet, but I think they’ve been about learning how to live on even when the living gets tough. Not to just keep breathing and eating, but to keep living–cherishing, enjoying, hoping, and holding my heart open even when it hurts.
When I started this decade, my initial response to pain of any kind was to close off and do everything in my power to not feel that pain again. But now I’m eight years in and it’s become pretty clear that if I keep that up, I’ll end up living alone in my bedroom under the covers for the rest of my life. This past week, I feel like I’ve cracked an incredible cheat-code for life–how to choose to truly live in the moment.
I want to close this with two things:
One, living in the moment is not natural. We worry about the future because we are aware that if we don’t make good decisions in the present, our future might suck or just plain never happen. Living in the moment is a skill to be honed, not just how to get in the moment and stay there awhile, but when to live in the moment at all.
It’s important to take precious time and allow yourself to project possible futures, sift through information that might shift your course for the better, or close your eyes for a visit to the past to avoid repeating mistakes. For me, especially right now, I know that if I’m ever going to make it to acceptance of this situation, I have to stop savoring the moment sometimes and let the full weight of the fear, anger, sadness, and inevitability of it all move through me. If I don’t, they’ll steal my joy slowly but surely from the inside. Still, this isn’t something I intuitively know how to do, I’m figuring it out as I go and practicing.
Two, I’m okay. Obviously, this isn’t how I wanted life to go, but it would take so much more than this to ruin it. I have too many good people, too many good animals, too much love, too much humor, and too much to look forward to (whether I get to actually see it or not) for this to keep me down.
So here’s to 38–letting go of what was, savoring and accepting what is, and setting course for a beautiful what will be.
Black Ink Birds 