What I've Been Spending My Spoons On

Issue No. 8

Dear friend,

I told you that I’d be writing to you on a whimsical schedule because, as a Spoonie, I know that I can’t always put consistent energy into everything.

If you don’t know what a Spoonie is, the concept was started by writer Christine Miserandino who used spoons at a diner to describe chronic illness to a friend, thus coming up with “Spoon Theory”. The theory suggests that, on any given day people living with chronic illness, chronic pain, or disability—Spoonies—have a limited amount of energy (as represented by spoons) to spend on completing tasks. This means we end up making many difficult choices about how to spend our limited energy. How many spoons it takes to complete a given task can also vary considerably from day to day, so it can also be hard to predict how each day will go or to make plans with any certainty.

I’ve had an autoimmune thyroid disease for a long time. About four years ago, I was besieged by new and worsening physical symptoms. I knew that something else was wrong. It’s taken until this autumn to get diagnoses (although I’ve suspected for some time what they’d be). Prior to that, I saw many doctors who consistently told me there was nothing wrong with me. Since I’m a person of a higher body weight they would, more often than not, offer nothing more than the suggestion that I should exercise, as though I’d never heard of the concept. Thanks to telehealth, I’m now under the care of an amazing specialist who made me ugly cry at our first appointment when he told me that nearly all his patients have experienced the same “extreme medical gaslighting”. Finally, I was seen.

I’m hesitant to share my diagnoses because there is still so much stigma attached to at least two of them, but here goes: my specialist says that I have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and myofascial pain syndrome, with degenerative disc disease and a couple of bulging discs as another “pain driver”, which means, in terms of mobility, at present, I am functioning at about 30% the capacity of the average able-bodied person.

ME/CFS and FM disproportionately affect women and used to be classified as psychogenic (i.e. of psychological origin). To put that into perspective, so was Multiple Sclerosis (MS) until the MRI machine was invented. ME/CFS is now understood to be a neurological illness, while FM involves central nervous system dysfunction. Despite what is now known, misinformation and stigma remain. My specialist, who is also an expert in Long Covid, recognizes that ME/CFS and Long Covid are nearly the same thing and that it’s possible ME/CFS is also a post-viral syndrome. He’s hopeful that the research going into Long Covid will have a trickle-down effect. It’s an interesting theory and piques my interest since I had an unexplained virus that landed me in the ER right around the time my health worsened.

This is not the time to go into detail about the narrowing of my life that has happened because of illness and pain and the grief that has come with that. Or about the lessons I’m learning about finding joy in a smaller life and how being able to sit with grief instead of pushing it away is a liberatory practice. I only mean to adequately explain why I’ve been silent for a while.

A little voice in my head thinks I should go back and erase what I’ve just written, but that’s internalized ableism speaking. Maybe you’re feeling a bit uncomfortable too hearing me speak frankly about something that we’re culturally programmed to not talk about. You might even wonder what it has to do with the botanical world, which is what I usually write to you about. But I’m realizing, as I write this, that it’s relevant because my work with pressed flowers and chronic illness are intertwined parts of my story.

Over the last couple of years, the garden (which also now includes my own pressing garden) has become incredibly important to me, in part because it’s as far as I can go on foot. I like to think of myself not as mostly housebound, but as gardenbound. And to be clear, in case you haven’t heard me say it before, the garden is what my beloved and I call the outdoor portion of the two-thirds of an idyllic city acre where we live in a corner suite of an old mansion situated within a remnant Garry Oak ecosystem. Were I my old self, able to go much further afield, I may not have taken as much notice of the garden that I now so intimately know.

At some point in 2021, when I got my first flower press, I also read Helen Humphrey’s Field Study: A Year at the Herbarium. A herbarium is a collection of dried plant specimens mounted on sheets of paper. It can also refer to the building that houses said collection. In the book, Helen talks about how the social restrictions of the late 1800s and early 1900s made it easier and safer for women botanists to stay close to home to gather plants, but in that way significant collections could still be created. I felt like those women, except my limitation is health. It inspired me to begin making the garden and pressed flower artwork a big part of my small world.

Being in the garden and being in close contact with plants, especially in a creative way, is one of the things that has been most helpful and healing to me. It reminds me that I am connected to and belong to nature, which is imperfect and resilient. My nervous system is soothed when I am with the flowers, which also orient me toward beauty and delight! 

The thing I’ve been spending my spoons on lately is called Jill Margo Herbarium. I’ll be mindful of my spoons now and will repurpose images I used on Instagram to tell you more in a way that provides visuals too.

All of this is to say that this Spoonie is still doing what she can to bring some loveliness to this world that can be as scary and ugly as it can be staggeringly beautiful. Everything I receive from my pressed flower work is what I hope to pass on to folks who enjoy it: connection and belonging to nature, soothing, beauty, and delight.

Yrs. Ever,

J

P.S. I’d love it if you visited my new website/online shop. If you happen to want to do a little shopping, please note that the shop will only be open until December 12th and then will close for the holidays. (It opened on November 28th and the first batch of prints have already been shipped!)