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Jody Smith reflects on how vital she has found the slow return of her writing ability - how it has helped with the expression of feelings and experiences, contributed to reestablishing a sense of self, and has proved such an important and productive means of social interaction...
Soliloquy - A dramatic or literary form of discourse in which a character talks to himself or herself or reveals his or her thoughts without addressing a listener.
In my life before ME/CFS, I did a lot of writing. I kept a journal most of my life, and in the years before becoming ill, I was also writing for newsletters for my church and my homeschooling group. My husband Alan and I had a website with 40 writers that we managed, and I wrote for that too.
None of these made any money but it was all very satisfying. I had just moved into doing some proofreading and editing and made a little money at that until I got too sick.
For several years after that, I did no writing of any kind. I couldn't hold a pen because of the pain in my hands, and had given up on the computer keyboard because I had no clear thoughts and nothing to say. And by then, there was nobody to say anything to if I wanted to.
I mourned the loss of this integral part of my identity, with no hope that it would ever reappear. Until my naturopath Dr. Kelly Upcott asked me to email her every week and write anything I wanted.
My initial emails were about three sentences long. I would slowly and painstakingly list whatever the main symptoms of the week, and send it off, then head off to bed exhausted. I remember one email where I led with a sentence saying that I felt like low-grade crap. She was the only person I emailed, and my little missives left me depleted and scrambled.
A couple of months into her ME/CFS treatment, I noticed a change in the nature of my emails to her. I was now writing a few paragraphs, that focused less on symptoms and more on how I felt and what I'd been thinking. I told her horror stories of my challenges and past history. As time went on, my emails became much longer, and I used her as a sounding board, mother confessor and confidant.
My soliloquies were no longer delivered into a vacuum. Like the actor standing alone on the stage, I knew that there was an audience of one out in the darkness. It made all the difference for me.
Her replies were always short, sympathetic and reassuring. I would have liked them to be longer of course but looking back I think the important thing was that she always responded and I knew that I could count on her for that. I knew I could count on her to care, and to respond with kindness. What mattered to her in all this was... me. Just me.
In a period when responses and interest were few and far between, she filled the gap for me and helped me to pull together some of the rags and tattered threads of myself.
I felt like I had a voice again. I felt heard. I began to believe again that how I felt mattered. That I mattered.
She rarely gave advice. We were not trying to tackle issues or make changes. She was merely creating a space where I felt like a whole human being and helped me to come to believe that I could be so again in my real life, and not just in emails to my naturopath.
I think that if Dr. Upcott had not done this, my recovery in many respects would have taken much longer, and in some respects might never have taken place at all.
I began to write in a journal again during this time, and filled page upon page with my words, with my experiences and my feelings. In some ways my thoughts gradually became less muzzy and fractured, and I began to know what I felt and thought once more. I began to know where I was at and who I was again.
After a few years of this practice, I found myself with a computer that Alan had bought for me. We both knew that the chance of me being able to work in the real world was nil, but we both thought that perhaps I might be able to find some kind of work online. I had experience with this from our old website and had loved it.
We both also were very aware that this was no sure thing, finding work online was not guaranteed. But it was the only shot I had so back online I went.
The laptop sat unopened for the first few days. I was afraid that we were going to find that this had been a monumental waste of money. Alan very kindly did not ask me about my plans. He did not try to get me to do anything with this threatening machine.
After a couple of days I would open my laptop once a day to check for email -- there were never any -- and to check our bank account online -- nothing much there either. Then I would turn off the laptop and carefully close its lid and creep away from it till the next day.
Then I started looking through job lists online and was fortunate to get a bite after only three submissions to various sites. EmpowHER was going to let me submit articles about myself and about ME/CFS. They weren't going to pay me, but being able to speak about my experience and have it possibly read by others was heady-stuff indeed.
This was a chance to dust off my rusty skills, and re-learn how to type (I reversed letters and broke off words in the middle, lived on the backspace key). And the kind responses from my editor filled an old and dire need for personal contact.
This gave me the push I needed to start my own website Ncubator.ca about ME/CFS. Articles poured out of my fingertips as I told my story, to myself and to anyone out there who might read it. Some days I wrote three or four articles, but every day I found myself writing something.
After six months of free articles for EmpowHER, they started paying me to write for them. After another year they asked me to do some photo work. The next year I became an editor. And a year later, I was doing some writing for Phoenix Rising.
The odds against any of this happening were steep. I know I was very lucky to end up as I have. And what the future holds is anyone's guess. But I feel more "normal" and like I have a decent chance of being able to build a life again.
And one thing I am very sure of is that it's very likely none of it would have ever come to pass if the compassionate and astute Dr. Upcott had not looked into my soul and recognized my need to communicate and express myself to others and asked me to write for her.
Do you feel that if you can't get your words out you will burst? Do you feel like a ghost or like you have no reflection? Do you feel like you are choking on all that does not get said?
Journaling, emailing, writing for friends may be one of the things that can help to bring your life back into focus for you. It may well have saved my life.
Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors.
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I'm glad to hear you've had some decent recovery yourself. And thanks for your encouragement.