Autism / Fibromyalgia / Represention / Spoonie Challenges / Writing journey

Confessions of a Reluctant Spoonie


Forgive me, Father, for I have synonymed. Oh, wait, I’m not Catholic or Anglican (both traditions have the sacrament of Confession), I’m Jewish. So, that sort of confession isn’t appropriate. Yet, confession is an appropriate term for where I’m at with being a spoonie. The evidence is there in report cards and in what has been going on in my physical health for the past few years. It’s not a question of confessing to the world at large, but to myself. I spent most of my life suppressing some aspects of who I am, and not recognizing others. Swimming in the Nile, as the saying goes. It is not a healthy place.

The first realization I had to deal with was my gender identity. So, I did that, transitioned, and was overall much more content. The other aspect of myself was not as easy to discern. It was only after I’d gone back to finish my undergraduate degree and through making connections with wider community that I came to realize something else was going on. But what exactly was going on?

Thus began another journey, one rooted in my transition experience. Rather than just accepting things with my transition, I did a lot of self-analysis. When I pondered about other problems I was having, and continue to have, I realized that I am not neurotypical. The next question required help to tease apart. Attention deficit, or autism? The two do overlap and have similarities. I have always been highly sensitive: hearing, touch, emotions, and more. Keeping focused has been a challenge, especially when I am not interested in the task or learning. Friends at a conference who are autistic asked if I was, too. A couple of years ago I was ready to start looking at that aspect of myself. I sought a diagnosis.

The very act of seeking a diagnosis required a confession to myself. I am in all probability someone who is neurodiverse, which impacts my daily living and ability to do things in the way society expects. Receiving the formal diagnosis required me to realize that I am not lazy—a message that has been told to me by teachers and others, directly and indirectly, all my life. Looking at my report cards and psychoeducational reports from childhood, it is now obvious it was missed. Not surprising, given that in the 1980s one had to be ‘profoundly autistic’ or ‘non-functional’ in order to be diagnosed. I wasn’t hyperactive, so my inattentiveness was not seen for what it was, nor was my tendency to hyperfocus. My sensitivities to stimuli and emotional challenges were mostly ignored outside the home.

Now, I have yet another health issue that is making life even more challenging. It’s chronic and, like my being autistic, it’s often seen being lazy because one can’t do things. The symptoms, looking back, have been there for a while. I, too, had tried to push them off as my being lazy, even when I knew I wasn’t being that way at all. Discovering whether it was mental health or physical health was the next challenge. Having done that, I—reluctantly and not without some pushing by [our humble editor] Cait—talked to my doctor. The result: fibromyalgia. Not a fun thing, and especially not fun when combined with being trans and autistic.

What does all this mean for my writing and writing techniques?

First, deadlines. Deadlines are important for me in order to get things done. If someone tells me, “Oh, whenever it’s done,” it might or might not get done. When I was in university, having deadlines for papers helped me with timing, doing the research, and getting things done. I was, and am, generally able to formulate the entire paper or story structure in my head before starting. Then, I splurt it all out into my writing software. I use tools to assist in my processes. I have Endnote to keep track of references, citations, and bibliography. The extension in Word puts them in with correct formatting and layout. I don’t have to obsess over it. Scrivener works well for me for the writing of most things because of the clean, simple interface. I don’t get hung up on formatting until I’m done. It allows me to keep projects organized.

Second, I am slowly coming to realize that my old normal is not my current normal. I have to be more careful about planning going to events and being out in the world. It can take, depending on the activity, a day or three afterward to regain my energy. Instead of seven hours, I need ten or more hours of sleep. My brain is in even more of a fog than usual.

Third, being gentle with myself. I keep lots of plans and ambitions alive in my head. When I take things on that don’t have hard requirements, I can be gentle with myself if I am unable to get it done. This year I registered for the Writers Workout Games, a story a weekend for seven weeks. I got the first one done, but didn’t have the spoons to get the next two done. Entering every event is not a requirement so, I’m being gentle with myself.

Fourth, running with something when I’m inspired. When I have an idea, or something to put in writing and it’s flowing, I engage. I let my hyperfocus take control and go with it. The results are almost always worth keeping, even if they do require editing.

Fifth, embracing the diversity within myself and the voice that I bring to my work. It is not, for the most part, typical, and it is not usually mainstream. Yet, I seem to be able to communicate well in writing and people tend to like what I write.

What will tomorrow bring? I don’t know. I do know that it won’t be dull. It will be interesting, and it will involve taking care of myself and being gentle with myself.

TaliaCJohnsonTalia Johnson is a multi-faceted woman who is transgender, autistic, Jewish, queer, and more than the sum of her parts. She lives in Toronto, Ontario. Her work centres on bridging faith and queer communities, facilitating workshops, educating, speaking, writing, and one-on-one coaching, counselling, and mentoring.

She is an academic, poet, and short story writer.

You can follow Talia on her website, Facebook, Google, and Twitter.

3 thoughts on “Confessions of a Reluctant Spoonie

  1. Pingback: Confessions of a Reluctant Spoonie | Life from my Wheelchair

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