Day 25 – How have your goals as a patient/advocate/person evolved?
My goals as a patient and person have evolved in so many ways, as I’ve talked about in several posts this month. And although I didn’t really recognize it, I have been an advocate for some time and that role has only strengthened this year after discovering such communities as WEGO Health.
My recent post about dreams, art and invisible illness talked about my burgeoning goals as an artist and advocate with invisible illness. This post talks a more fundamental transformation as a person: one which is closest to my heart and is perhaps my very reason for being.
The greatest evolution I have experienced as a person was my transition from a scientist named Linda, to a writer named Jane. Becoming Jane has been one of the most challenging parts of my journey, but also the most important. I feel like this month’s health blog challenge has been another step toward giving my inner writer the voice and expression she deserves.
I’ve spoken a little about my early ‘career’ in science fiction. Jane, my writer self, had a hard time of it growing up. While a teen’s desire to write might be considered laudable, Jane was anything but encouraged as her stories and characters swiftly became the target of family jokes. As a person who naturally dissociated aspects of self that were not welcome or desirable, you might understand when I say that my ‘writer self’ fought for survival from the time she emerged when I was 14 years old, and for many years after I left home.
The lack of support from one’s family is disappointing to most youths, but becoming the target of constant ribbing is intolerable. Jane was chastised for being too sensitive and not laughing along, which is to say, she was responsible for taking the teasing to heart. I wonder. What sport is there in making fun of the dreams of a 14 year-old because you don’t understand them? It’s something I’ve never understood and I’ve never done with our own children.
Despite this challenge, Jane believed steadfastly (although secretly) that one day she would be a writer. Even through some very difficult years as I dealt with depression and undiagnosed Sjogren’s syndrome, she continued to write, although more about the difficulty of surviving.
After dropping out of my PhD on disability in 2005, I felt ready to divorce myself from science and embrace writing. This included dropping my first name, Linda, and starting to go by my middle name, Jane. It was difficult at first, even though it was something I wanted. It caused confusion when I explained the switch to our kids, friends, neighbours and doctors. Doctors in particular took a long time to get it right because their world revolves around records and legal names. The transition was even more difficult for my family back in Australia, who had only ever known me as Linda, and seemed to take my announcement as yet another crazy thing I was doing. They persisted in calling me Linda, long after anyone else. I practised patience, but it was frustrating to say the least.
Changing one’s name isn’t a common thing to do, but it felt right and important, even if it felt too personal to share the whys and wherefores at the time. Having had a history of dissociation, it was a little difficult hearing both names at times, and feeling (more than ever) that I was having some kind of identity crisis.
In one sense, it was a deliberate attempt to break from all the unpleasant associations of the preceding years: all the times that Linda was very much made to feel invisible. Another major reason for the change was the desire to run from the shame and loss of having to give up my dreams as a scientist, and the friendship of the few peers I had in that world. After all, I was difficult to understand. I had to constantly cover up my worst days with depression, and Sjogren’s syndrome didn’t leave me much energy to dedicate to friendship anyway.
In another, more important way, I was also giving myself permission to be the writer that I’d really been all those years. For me, part of the transformation in recognizing my ‘writer self’ meant recognizing what I really wrote about. I had a long-running joke with my friends over the years, which was that my characters always seemed to suffer from depression and alienation, and never seemed to make it to the end of the story. Even when I was writing about other worlds, in truth, I was really writing about inner worlds. I was writing also about passive people who were more or less victim to the ways of the world. I not only wanted to rewrite the common arc of my stories. That was a way of life and an ending I felt I had changed. I wanted to write about more: survivorship, self-determination and hope.
In this way, I became a writer of literary fiction. Literary fiction is all about the inner world, and felt like the most honest way to be myself, even if just through the written word. I realized that writing was my most reliable way to communicate with the world. Although I had done some blogging before, most of it had been under various pseudonyms, and for the first time in 2005 I wrote about my inner world and journey under my new name in Synergy Magazine. It was scary and thrilling to not only be me, but to be ‘in print’ for the first time of my life.
Although I still battled for my health and sense of self at every turn, I felt very much buoyed by the fact that I was out in the world, writing as Jane Waterman, and beginning to tell my story. I had already begun to strip off the layers of invisibility that separated me from the world as a child. Health and life continued to slow me down, but by 2010, I was ready to make the transition to Jane full-time. I knew this because I was tired of (and more than a little annoyed by) doctors and dentists continuing to call me Linda after I’d told them half a dozen times that I was going by my middle name!
So, despite my hate affair with bureaucracy, I pulled on my gloves once more and went through the process of doing a legal name change.
I became Jane Waterman for real.
That is not the end of the story, however. This year, I began to be aware of a ‘little voice’ inside me: that of a scientist named Linda who still has a voice that deserves expression. This doesn’t mean I’ll be embarking on any more name changes, but I may begin to read and write about science in other venues. It will certainly inform my work. I no longer need any part of me to be rejected as unwelcome and invisible.
I am Jane, the writer; Linda, the scientist; and all the myriad selves that make me, me.