The very personal downward spiral of crumpled butterfly wings

I went to a therapy session right after our most recent Butterflyway planting, still wearing my giant monarch wings and Butterflyway Ranger t-shirt, excited to gush to my therapist about the morning I had spent with some of my Pollinate Aylmer peeps and two classes of kindergarten kids building little pollinator habitats at a local school.

I thought I would sit down and write about that experience, and I did, but after the session with my therapist, another, far different experience poured out of me onto this page as well, and the two are far too juxtaposed to stay together.

I chose the truthful, far harder to write part, and kept my editing to a minimum, somewhat forcing myself to reflect as I read this back, again and again, wondering how I reached the point where I can let myself send such personal thoughts into the un-retractable world wide web. I’m mixing in photos of random native flowers in bloom when I need a break from my own words, because I have no photos of the inside of my mind.

I arrived, practically fluttering into my therapist’s office, still soaring after my experience planting with 5 year olds earlier that morning. She asked to see the wings better. I took them off, happily showed them to her, then attempted to put them back on.

I struggled. She tried to help me but I refused, insisting that I can do it myself. I fumbled. She watched me, and offered to help again. I told her once more I’m fine, but the two elastics on one side of the wings were twisted, and I couldn’t understand why, or how to untwist them back.

The more I tried, the more twisted they became. I knew whatever I was struggling with had a simple fix, one which one of the 5 year olds I had spent the early part of my morning with would have solved without thought, but I seemed unable to untwist the left wing and put the elastic back on. My brain was somehow translating the instructions I needed in reverse. She watched me, and told me she is moments away from coming to my rescue with or without my ask.

She made secret therapist notes in her secret therapist notepad of lined yellow paper. I think it was yellow.  My brain may be filling that detail in for me. As I write this I am suddenly less sure. It definitely has a cover, and she usually keeps the cover closed, except when she deems something I say noteworthy, at which point she discreetly opens her book, writes something, always in a similar place on the page, about one third of the page down, near the right margin. She is skilled at maintaining eye contact while making these notes.

As I was standing, so as to continue failing at twisting my butterfly wing, I was above her, and saw her record a short scribble, of what seemed like a single word, which she was circling over and over, presumably to remember later. I wasn’t quite close enough to read the word, so I asked what she was writing. That took her focus off me just as finally, after what felt like hours, I managed to untwist the wing and put it back on. Unfortunately I missed the shoulder elastic, so it was still wrong, but I was happy to have made progress.

She told me she is writing that I am having significant trouble untwisting a butterfly wing. She smiled kindly as I fixed the wing and finally sunk myself down into her soft, comfortable armchair, feeling her inquisitive gaze still drilling through me, as she closed her notebook, folded her arms in the shape of an X across it, and asked how I’m doing while doing something with her eyes to make them sparkle in her kind, empathetic and inviting to talk way.

I tried telling her I don’t think the wing incident is that significant, and she told me as an isolated incident she agrees, but she documents observable something-or-others to help her recognize patterns, so that she can help me best. I challenged her by asking what patterns, trying to shift away from the kind, yet penetrating and somewhat pitying stare she seemed insistent on employing.

I don’t recall exactly what she said (that’s one of the freeing symptoms of memory challenges), but she asked me about an incident I had detailed to her in our previous session, which has happened after another Butterflyway School planting, and I did not recall this incident either. At all.

She used cues to help me, and the moment she was referencing began resurfacing, in fragments, in unexpected ways. I recalled and recognized the feeling of the incident first. Then, where I was standing when it happened, afterward what I was seeing as it happened, each time followed by another prompt from her. She is skilled at these recollection inducing prompts, and providing just enough detail to move me forward a step. I am fascinated by how she is able to do that, and also fascinated by this gap in my ability to recall details, and the steps my mind takes to retrieve them.

In some form of inexplicable seeming Stockholm-like syndrome, I think I somewhat enjoy this process with her, often specifically asking her to pause after one of her hints, so that I can take inventory, in full, of what I recall, and where there is still a hole. My sense memory seems to return first. How I was feeling in a particular moment. What I was looking at when the incident happened.

I still struggled with exactly what the incident was until she went into further detail, and even now, as I write it down, I am struggling to recall the context. I was teaching, just as today, a group of kids, this time grade sixes. At the end of the lesson, their teacher asked me a question. I don’t remember what the question was. I now remember that I tried to answer it, but random words started coming out of my mouth. Nonsensical words, which I had no control over. I had an answer to her question, and I was attempting to communicate it, but my brain was spewing random words, not what I was trying to say. I somehow moved over to point to something where the class was able to follow me, giving me a few moments to recover, but I was left quite shaken by the incident. I had described this to her as though a ventriloquist had sat me on his lap and taken over my speech. I picture said ventriloquist wearing a striped boat neck shirt, suspenders and a French beret. That seems banal, and I hope if it happens again, I can conjure a more creative outfit for him.

As my therapist gently helped me recall this incident, she also spoke to me about the oddity of my neurological processes, and I spoke to her candidly about my fascination with understanding how I am failing to remember. She was quite candid in return, at my insistence,  regarding what she’s been tracking and her findings and observations of my brain, in particular, and the increases in my cognitive gaps over the last 2 years. She gently let on that although I’m not quite there yet, a day will likely come, probably soon, where she will have to recommend that I am no longer allowed to drive. I told her I expect that, and I have come to accept my family doctor’s decision to send me for a driving test every year to allow me to keep my license. I don’t want to endanger my family, and though I understand my limitations now, I can also feel that a day is coming, likely sooner than later, when I won’t be able to keep driving safely.

I can feel my memory slipping from my grasp, in loose fraying threads, as though peeling from a larger rope under the heat of a flame, one thread snapping at a time, while I watch, mesmerized by the flame, too far under its spell to allow me to get up and blow out the fire. Or maybe my legs don’t work, and I’ve somehow injected just the right concoction of drugs to allow me to stay calm, and watch everything from behind a white screen, like a moth trap or an old projector, without flinching, or blinking, in some sort of trance where fear,  humility and a need to hide behind a concocted smile have faded with the sunset, and what remains is dusk and a cloud of mosquitoes that I need to swat every few minutes with my hastily tattooed arm to continue seeing in front of me.

I remember poetry, and particularly the Love Song of J. Alfred Proofrock, and the line that has made my spine shiver a hundred times over, and I recognize myself in it once more. One hundred and one.

I am old. I am old.

I wear the bottom of my trousers rolled

I am lucid enough to accept that I am slowly, yet in an accelerated manner, losing a fraction of memory each day. I repeat myself. I forget small things. I forget more significant incidents that don’t bring me joy or happiness. I repeat myself. I forget words, with greater frequency. I struggle to complete sentences, and the mere thought of attempting to express myself after 6 pm is exhausting. I’m tired. I’ve tried napping and it doesn’t help. I don’t always finish sentences, and when I do I am often reminded by my family I just said that.

I can’t imagine how it must feel for them to watch me slip further into myself, and love me, accept me, and come to terms with a lack of answers or explanation or hope it improvement, rather just a vague stamp of some rare disease that affects people so infrequently and so differently and unpredictably there are no expectations to be set. And if there were, I’m not meeting them, and my family has to learn to translate the person I used to be with the one in front of them now. As a mom, that is my hardest hurdle.

I am at peace, mostly, with the unraveling of my brain, and I think I’ve found this peace through a form of morbid fascination with watching it slowly unfold before my eyes, combined with making plants grow at the opposite speed of my memory loss, and challenging my mind and body to get up and make something happen each day.

It’s harder for my family, and I hope that being open with them helps them come to terms with what is happening to me, rather then make it worse. Some are so young they don’t know any different, and ask for Daddy when they have a nightmare, or first thing in the morning when they wake up and need help getting ready for school.

That used to hurt but we all accept it for what it is now, and a little part of me breaks off like stale bread every time she comes into our room first thing in the morning and asks for Daddy, because he is the reliable parent, whose shoulders carry all of my falling stale bread crumbs, silently, stoically, most of the time with a glimmer of the same bearded and understated smile I fell in love with years ago, carrying a little 3-legged frog on his shoulders.

Today we are a unit of  people who love me and watch me and hurt. Some talk about it, some cry with me near cemetery parking lots, and some carry it in an invisible fanny back worn cross-shoulder somewhere close to their heart, I’m sure, but keep it close to them as they would their passports in a foreign country.

My therapist asked me if I am scared. I tried to explain that this unravelling is not what scares me. I’ve traded fear for curiosity there, the same way I think I traded fear of dying as a little girl for intrigue of learning what the mystery of death feels like.

I’m no longer afraid to forget more and more, to repeat myself more than I do today when I’m certain I am expressing thoughts, only to be told I have already expressed that thought, or asked that question, sometimes several times in a row. It’s been happening so frequently I think my family has come to expect it of me now.

I am not yet at peace with burdening my family further, and seeing their eyes widen in response to one of my gaffes hurts, for them. I hope our collective dark sense of humour will somehow carry them through wherever my consciousness is going, and whatever type of jelly I may turn to. They need that, and I need to believe that it will. This is how I keep fear at bay.

It’s also how I continue to learn to accept limitations, and take a step towards being smaller, and simpler, and learning there is something new I can no longer do, or something else I need to step away from, and accept the narrowing of the tunnel my existence passes through.

I wrote this 2 weeks ago. Maybe 1 week ago, actually. On a Thursday, right after therapy, sitting on my favourite chair in our sinking sunroom. I wrote it for me, to process accepting my need to find a way to pass over my Pollinate Aylmer project to a collective (albeit an amazing one), and make peace with  knowing that it’s grown beyond what I can handle,  that window of distress (therapist lingo) is shrinking, and once again, I need to shrink another part of me, and go back to what I CAN still do, and that is grow plants.

I am so fortunate to have met the amazing people whom I have met through my journey as a Butterflyway Ranger. Some, like me, are a little bit broken. Some are struggling. Some are barely getting by, and some are intense, and passionate.

Together, we pot plants, and create meadows, and boxed pollinator habitats in school gardens. We transform green spaces, and watch life return in the form of small but mighty insects, in places where they didn’t land before. And it doesn’t matter how large or small these spaces are. Each one, despite how tiny, chaotic, clean and orderly, perfect, or pure, or simply a thoughtful attempt, becomes a little hop in the journey of a tiny pollinator, or perhaps a nest, or final resting place for them, and each one matters to them.

I have never wanted to shared much of myself online, and never intended to reach this level of personal, but writing this blog has encouraged me to start writing again, and this, along with my gardening adventures, is what pours out of me. I have found myself at ease with sharing the ramblings of the slow unraveling of my mind, hidden among far more uplifting chicken stories and habitat creation walk-throughs and updates, because it is me, and it’s my truth, and the drive behind my need to do what I do, and find a way to do better, where I still can, with a lot of words and run-on sentences.

If my unravelling interests or inspires you,  do something tiny and leave a bit impact for many tiny living things.

Pick a spot in your lawn, small or large, and convert it into a tiny pollinator habitat. If you don’t know where to start, message me. I will help you. I grow plants 😉