Accepting the things we cannot change

I enjoy blogs like Words Are My Game, where Liana M. Silva chronicles her writing life: the struggles to fit writing in amongst family issues, or the difficulties in finding direction with a new book she’s working on. Her blog is the story of process, of a work in progress, and does away with the idea that the final product (be it a book, an artwork, or a journal article) comes out fully formed. It demystifies the creation process by gracefully blending her public and private lives into an integrated whole. You see who Silva is and how she reaches her goals, and you respect her for it.
In academia, your public life is collated in a CV. It’s essentially a document that lists all of your accomplishments, in chronological order, under a series of easy-to-read headings. Out of necessity, however, it’s a less than complete picture. It leaves out the messiness – the process – behind each listed item, in favour of that which is easily quantified and measured. While that messiness can sometimes bleed through (a gap in your career timeline due to parenthood, illness, or just a change of heart), the onus often seems to be on you to convince the reader that these hints of background story are irrelevant, and that your dedication to science is unaffected by the trivialities of your private life. While online venues such as blogs leave the door open to revealing a rich personal life, a CV leaves out those stories entirely. It’s the appearance, rather than the reality, that matters.
When I came across this post by Kathryn Allan on PhDisabled, it brought back a lot of the same feelings I had when I first became ill and had to leave academia: the combination of anger, sadness, and frustration, mixed with shame at the nature of my illness. My private life had of necessity become my main priority, and I had to let a lot of my public life go. But I also realized that I’m finally starting to come to terms with some of those feelings, and to accept that our private and public lives can’t exist without each other.
I’ve blogged about my illness before (here, here, and here). Though I remain uncomfortable with having to say ‘I can’t concentrate,’ or ‘can you help me, please?’, and it pains me to admit that ‘I feel terrible’ or ‘I’m exhausted,’ especially when I can’t identify a specific cause for those feelings, I’m learning how to deal with it. As Kate Horowitz writes:

“I had to learn how to be with sick me. I had to learn…how to say, “I’m sorry, but I can’t,” not because I’m a quitter, but because I care enough about myself to know my limits.”

Whether I label it a chronic illness or a disability, either requires that I manage life accordingly: medication, daily walks and afternoon naps, counselling, limited public interactions…basically maintaining a relatively even keel, straddling the line between falling into the abyss or shooting up into the sky like a rocket. Building on my strengths while constructing a scaffold to support my weaknesses.
On many days I resent this illness and its associated limitations. But I’m beginning to accept the basic fact from this post by Kady Morrison:

“As frustrating, infuriating, agonizing, and exhausting as it can be, our experiences and struggles with [mental illness] are part of us, and we wouldn’t be the people we are without them…To look at it as an enemy is to deny that part of ourselves any validity.”

I’m not going to be ‘cured’ and go back to my old self, picking up where I left off as though nothing happened. This is normal. Where I go from here, and what my everyday life looks like, is a function of my illness, and any denial of its impact on both my private and public lives does me – and those around me – a disservice. I may be finally absorbing my own words, posted on this blog just eight short months ago:

“The quest for accomplishment has been drilled into me since I was a child: if you’re going to do something, you must do it better than everyone else…[But] those of us with chronic illness have to change how we see our lives – both for ourselves and in the context of those with whom we interact. It seems healthier for us to focus on process, which acknowledges that we all take different routes to a goal, whereas product requires only that we reach that goal.”

Standing on the other side of the Winter Solstice, with the days lengthening in the approach to the New Year, I realize that my private and public lives are two sides of a complete whole. My personal process – and the stories behind it – provide context and richness to anything that eventually gets listed on that ‘objective’ CV. Ultimately, they may be more important than the listed item itself – providing a window into what is often hidden regarding how people with chronic illness function in the world.
Hopefully it will help others better understand, or at least see more clearly, how many of us hide a broken private life behind a pristine public shell. There are always stories behind those polished, shiny CVs…

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