It’s with a feeling of quiet achievement and sadness that I continue putting my Patreon and my website together. The achievement feels quiet because everything takes longer. Sometimes, it feels like I’m writing and developing the website through a sheet of nearly opaque glass. The sadness is about the time that passed to get me here.
In 2006, not long after the launch of my janewaterman.com website, I had plans to share my writing and art online. Today, I found fragments of the development archived on my hard drive – the partially completed pages, and the samples of artwork intended for sale on CafePress. Although the few posts I made around that time reflect moments of hope, it was clouded by fear and confusion.
The year before, I had dropped out of my PhD program on disability – defeated by the bureaucratic wheels of academia, the unexpected side effects of medication (hydroxychloroquine, used to treat Sjogren’s syndrome) on my mood, and the loss of myself in the role of Mum and homemaker.
The year before, I had also adopted the use of my middle name in day-to-day life. A lack of identity plagued me. As someone who was used to having many identities, I could no longer see myself as the scientist, the perpetual student of life.
I’ve moved through several identities since – the more notable ones being the senior technical writer/editor for seven years, the person with the mental breakdown for one year, and the chair yoga teacher for the next three and a half years.
I sometimes mistake the passing of those identities as a loss, but they’re all still with me – even on the days I’m stuck behind that glass, unable to grasp the “big picture” of my dreams. I know it still exists through the glimpses I see. The scientist, the writer, the artist, the programmer – all remain.
Each glimpse is a victory. That my dreams can survive thirty years of physical and mental illness, of weakness countered by a resilience that helped me survive, tells me that those dreams are powerful. I still believe in them. I still believe in dreams. Perhaps I’ll only ever be able to reveal a small part of that big picture, but that no longer seems so frightening. When I first became ill, and for many years after, I was haunted that I’d never live to see those big dreams made real – that I’d somehow become worn down and invisible before they could manifest.
Now, every shared fragment of writing feels like a victory. It feels like I’m sharing a piece of what a life decimated by chronic illness, pain, depression, and anxiety is like. Not everyone will understand, nor care to, but some will and maybe those people will keep filling in the picture. In doing so, they’ll represent the lives of all who went before and were never heard, and those who yet to come.
I still struggle with the feeling of invisibility – of trying to overcome an illness without the active understanding or participation of doctors or the community. Perhaps it’s too hard to comprehend (even with the sample of “life standing still” that COVID-19 inflicted on us all), and I’m too tired to explain.
One day, enough of us will speak, and there will be a movement to restore the voices and, most of all, the potential of all who struggled every day under the weight of a body that never worked the way it was supposed to and a mind that, tied to that body, couldn’t break free either.
Maybe one day, we’ll all be free.