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.
When I was trying to decide where to go next with the Lipstick Letters, I was torn between Memory, Perception, and Intuition. I was heavily leaning toward Memory for a long time, but even though I drafted several Memory posts in my head, none of them made it to paper.
Then, a few weeks ago, I went on a weekend alone to rest and sort it out. It was in that long, deep, lovely silence it became clear that my intuition had something to say.
I fought it. I was so sure it was going to say stuff like, “Get off your @$$ and handle your messy life.” But no. When I finally caved in, late afternoon on my first, full day alone, all I heard was, “Girl, you’re tired. Have a good sleep and we’ll talk in the morning.”
I slept from around four that afternoon until seven thirty, got up, had a snack, brushed my teeth and slept from eight until the next morning. And when I woke up, I could hear myself. I could hear myself so clearly it was impossible to deny how much I had pushed my intuition aside to survive wave after wave of grief in the midst of new motherhood.
I listened. And I learned.
My intuition is kind. Instead of being salty about being shoved down and ignored repeatedly for literal years, it was gracious and proud of me for slogging through, giving my kids everything I had to give, and making it to a place where I was strong enough again to go back and start working through that series of terrible losses.
Driving home, I promised to keep listening and act accordingly as much as possible over the following month. And I did!
I reached out when I felt like reaching out. I rested when I felt like I needed rest. And on days when my grief came knocking, I let it in and sat with it awhile instead of pretending I didn’t know it was there. I set a new boundary with my kids to ensure I get at least a couple of hours to cook or clean or lay down or fold laundry without interference each day.
I let my mind wander back through some choices I’d made over the past several years (another task I’d been avoiding) only to find that so much of what I’ve said, done, not said, and not done, was me in survival-mode. A mode I kept trying to get out of only to have another tragedy toss me back in.
Each whisper I tended to, I felt a little more of the weight of mistakes, the weight of difficult choices, the weight of loss, the weight of guilt, the weight of pressure to do and be more fall away. And even then, my intuition did not tell me to get out there and start rebuilding a new life out of the rubble of the unfinished one I’d semi-started here . . .
It told me to keep writing and sharing, to go get a hair cut, and to remove the gross, old wallpaper in the hallway. So. Yeah. Here we are. : )
I’m trying hard to avoid making these letters about advice. (If there’s one thing I’ve learned in my twenties and thirties, it’s just how much I don’t know.) But I have to say, if you’ve been shushing that inner voice out of fear of what it’ll say, then like me, you might be mistaking your thoughts for your intuition.
My thoughts can be anxious, angry, self-deprecating, and flat out cruel. My intuition is always loving, always tender, always gracious, and not just toward me, but toward everyone else as well. So much so, that nowadays when I’m confused about which is which, that’s my go-to way of telling them apart.
Bottom line? I’m beginning to trust myself and my inner knowing again. And it feels really really good.
Hi. As many of you know, last weekend I booked an AirBnB for ONE. Just me. And me, myself, and I had the most quiet, peaceful, and refreshing weekend I’ve had in six years. I took the opportunity to sleep, to read, to knit, to think, and above all, rest.
But back to the thinking part. After this trip, I’ve realized I need to get out more. A lot more. Out, not as in to an AirBnB by myself, but out, ya know, where the other people are.
Strongest supporting evidence for this conclusion is that time (four days ago) when I went out by myself to order a sandwich for lunch. And I failed, friends. You could even say I failed spectacularly. Maybe some of you are thinking, But how can you fail at all, much less spectacularly, at ordering a sandwich? And if that’s what you’re thinking, read on and let me introduce you to Awkward Girl.
I’m an introvert (I know, I’m awfully outgoing if you’ve met me in person, but I assure you, I am an introvert), and as such, I made a point to pull up the menu online before I set out for the restaurant so I could plan my order in advance and not get anxious at go time. The way it looked, you could either build your own sandwich from a huge list of ingredients or you could choose something like a BLT where it was decided for you. I chose an Italian cold-cut from what I thought was the “done for you section” and then thoroughly enjoyed a beautiful, ten minute walk to the sandwich place.
When I got there, I went up, full of confidence, and said, “I’d like a six inch Italian cold cut.” The guy behind the counter said, “Okay.” then continued staring at his notepad with his pen out. So I continued, “I’d also like to make it a combo and get a Pepsi and chips.” He nodded, then waited again . . . kept waiting until it was painful. . . then finally looked at me expectantly and said with just a hint of impatience, “Whadya want on it?” I stared blankly. So he more kindly and slowly continued, “You picked the meat. Now what bread and toppings do you want?”
I looked down at the jumble of fifty-ish ingredients listed on the menu, my brain went into instant hyper-drive before the engine exploded and everything went dark for several of the longest seconds of my life. Then, I looked him straight in the eyes and said, “That’s too hard. Ummmmmmmmm, I’ll have a BLT.”
Yes. I said those words. I, an adult, who is currently raising three, small people, an adult who, at one time, ran an eleven million dollar budget and had twenty plus staff and was a director, said to another adult in public that it was just too hard to pick sandwich parts. So hard, in fact, it could not be done.
Soooooooo, yeah. I’m going to need to get back out there (as in, the world) ASAP before I lose my ability to process speech altogether. Although, to be fair, looking at my history, there’s only so much improvement I’m likely to make as it relates to being awkward.
Anyway, it was a great BLT, so I guess all’s well that ends well, right? Image below is not the actual sandwich, I was too busy enjoying it in a lovely gazebo to think about getting a photo. But it was as delicious as this one looks and I at least had the presence of mind to swap out mayo for mustard!
There’s so much of the past three years I want to write and I plan to write it all but where to begin?
It started with losing Tammy–a person who helped me become the woman I am, who always saw the best in me and let me know it. She was much too young, it was so unexpected, and before I could catch my breath, I was faced with the decision to put down my dog, Why?lee. Why?lee was seventeen at the time and we’d spent fifteen of those years together. It was brutal, but at his age, I knew it was coming. Three months later, my horse Tristan had to be put down suddenly. He was twenty eight and we’d spent eighteen of those years together. Despite his age, I was unprepared and completely wrecked.
Two months after that, I had a miscarriage, and in another two months I was pregnant with twins, our cars broke down at the same time, my pregnancy was a nightmare of violent illness every single day for seven months. I got so dehydrated from vomiting, I had to go to the ER for an IV.
Then we lost Kerry–one of the best humans I’ll ever meet. I wasn’t actually related to him, but he was soul-family to me and he will always be one of my highest role models. And then we lost Brent, a good man and a good friend, for devastating and unfathomable reasons I still can’t wrap my heart around.
The past three years I’ve felt like I’m always just one half-step away from a complete breakdown. It’s too much. Too much loss, too much sadness, too much worry. I am unimaginably grateful for my friends and my family, my amazing neighbors who just keep showing up even though I struggle to reciprocate, for this beautiful place where I get to watch my three, precious babies experience so much joy and wonder. Because it’s been some of the hardest living I’ve ever had to do.
Looking back, it’s easy to see that I was not, in fact, a half step away from a complete breakdown. I fell right over that edge and did have a breakdown. A breakdown doesn’t necessarily mean a complete inability to function. For me it looked like a lot of cancelled plans, a lot of not responding, not sleeping, not brushing my teeth, not taking enough showers. I stopped trying to process my grief. I stopped making plans and trying to connect. I stopped reading. I stopped riding. I stopped everything. I’d forget my thyroid medication, forget to eat, forget to respond to texts. My whole life became one minute to the next, one foot in front of the other, one absolutely necessary task at a time.
And now I’m here, having drifted so far only to come right back to the same realization that I had in the midst of my cancer treatment–this is my life and time presses on whether I’m truly living it or not. I have lost so many but there are so many who are still here. I am still here. And for what? . . . if all I do with my time is shuffle one minute to the next? I need to write out this dark chapter so I can finally close it.
So I’m straightening my shoulders and picking up the reins (and my pen ; ), even though I haven’t quite decided where I’m going yet. I know I’m ready to leave here. I’ve turned a corner and whatever comes next, I’m meeting it head on . . . in clean clothes . . . with my teeth brushed . . . and my lipstick on.
The last time I felt this tired, it was due to a life-threatening, medical condition. Motherhood and loving horses are not for the faint of heart!
Nothing went as I planned when I planned this trip. I thought it would be too long, and yet I find myself scrambling.
I am so afraid for my horses–moving like jellyfish in the ocean of my life, at the mercy of currents they cannot control.
Tris put his two front feet in the trailer of his own accord for the first time in the fifteen years I’ve known him and I cried.
The first time my sweet Sunshine rode a horse, it was in the same driveway where I first rode a horse when I was three years old. Best of all, my dad was there to watch and help, just as he watched and helped me nearly thirty years ago. Tristan was every bit as good to her as Missy was to a very little me. : )
I am looking forward to a long, dark, quiet winter full of coffee, momming, writing, coffee, knitting, horses, coffee, dogs, and more snowy, northeast adventures.
I have so much more to write it’s silly, but not one more millimeter of head or heart space to give to words until my horses are safely on the other side of their incredible journey. Please keep them in your thoughts, by early October we should all be safely together again where we belong. : )
Black Ink Birds 