A Small, Tenacious Part of Me

One of the things I am consistently having to remind myself of is that CFS/ME is experienced differently by everyone who has it. A naturopath said to me once, “It’s not really CFS. It’s more like CFSes”—that is, a completely different illness for each person. That’s partly what makes it so difficult to treat.

I would not describe my physical symptoms as severe. I can go for regular walks (and, living in the mountains, puff my way up and down the unavoidable hills), and am currently doing a small amount of resistance exercise as prescribed by a physiotherapist. Recently I’ve been getting into my studio quite often to paint, which usually means leaning over a piece and working on quite small details for sometimes considerable periods of time. Such things are not always possible, nor are they easy. There are certainly limits to my energy. Yet I am mobile, and in that sense, I am fortunate. 

Sometimes I wonder whether my symptoms are more mental/cognitive in nature. I can’t seem to think clearly, or in any kind of sustained way. Occasionally I struggle to think of completely everyday words like ‘fork’ or ‘cucumber,’ and they emerge awkwardly from my mouth. Currently, I am not reading as much as I would like, as my concentration is poor when I am fatigued, but I can still read, and assimilate information to some degree. I am well aware that some people with CFS are unable to read, so I am very grateful that I still can, for where would I be without my beloved books?

So, it’s not that I can’t function at all—yet my functioning is significantly impaired.

However, what I know very clearly now is that my mental symptoms cannot be separated from my physical ones, and vice versa. There is no real separation between body and mind, other than the one we impose conceptually or philosophically (which I think is gradually coming to be understood as a big mistake).

This means that I am becoming more and more aware of physical symptoms which are having a deleterious effect on my mental state and abilities—symptoms that I would not have noticed before, having become so used to their presence; or symptoms that I simply had not realised were related to other symptoms (everything is connected, after all). 

I do not want to sound like I am complaining, or seeking pity. I just felt compelled to write this down, to try to make sense of things, and express something of my own experience of CFS. I’ve been doing so little writing recently, it just feels good to want to write, despite the subject matter.

What prompted this was a review I read yesterday of Heroines, the anthology a short story of mine was published in last year, in which my story (the reviewer calls it a poem) is mentioned in glowing terms:

Therese Doherty’s poem ‘The Fisherman and the Cormorant’ soared with stunning lines of imagery, encapsulating the flight of a half-woman, half-bird after she is cursed by a man who ‘wanted to grow his own power by stealing from [hers]’. Therese’s vivid poetry makes the reader believe they are there, with ‘supple wings instead of arms, and dark as night feathers’. (Yvette Gilfillan, South Coast Writers Centre blog, https://southcoastwriters.org.au/news/2019/review-of-heroines-an-anthology-of-short-fiction-poetry)

This short paragraph made me so happy. Yet it also made me sad, for that is what I know I am capable of. A few years ago, writing stories brought so much joy, magic and purpose to my life. But I can’t write when my body-mind is impaired as it is now. Right now, the thought of writing stories barely appeals to me, and it doesn’t even seem possible. My mind simply refuses to work that way. My body rebels. 

In short, I am not myself. 

A small, tenacious part of me is just barely hanging on, is still hoping an idea will spark into being, and that I will be able to fan that flame, get it burning strongly and brightly once more. Yet I know that is hardly likely unless I address the physical symptoms which are having such an impact on my mental abilities.

This leaves me both frustrated and hopeful. It’s not going to be easy, and I know it will take time and patience, but improvement is possible. It’s just a matter of making sense of what is happening in my body, and finding ways to ease the symptoms.

In many ways I know I have been going through a long period of transformation, unlearning many things and reconsidering my perspective on the world, and transformation always involves some pain and discomfort. As I wrote in my story, ‘Changing is always a difficult undertaking. We avoid it more often than we embrace it.’ So I am trying to embrace it, and work with it, and to find my way back to where I want to be: immersed in a mythopoeic understanding of the world, from which stories can grow. If I can find ways to heal my body, and relieve my discomfort, I am certain that my mind, as an integral part of my body, will feel more willing and able to connect with the imaginal once more, and to make something of that.

It may be that having an illness means that a certain level of potential will never be reached, or will only be reached rarely, and with great effort. But for the sake of my sense of self, my happiness, and whatever health I may have, I am not going to give up on dwelling in possibility.