“This December I found a mass the size of a cantaloupe in my lung…I used social media to express my feelings without having to burden my family and friends.
I’d like to write a feature…that explores the way the Internet has changed the way we view illnesses, both visible and invisible, and how it’s changed our acceptance of grief and death…”
As I first reported on Facebook last week I had the opportunity to be interviewed by Teresa Sarga, a journalist and blogger from Syracuse, New York, about blogging as a person living with HIV/AIDS “…and more”. The issue of stigma is being unearthed and critically examined more and more lately, which is a good thing.
I’ve decided that, so long as I am open, I am not letting stigma thwart me.
Stigma surrounding HIV/AIDS, in my case, began with me.
If anyone deserves AIDS, I told myself, long before I tested positive for the Human Immunodeficiency Virus, I do.
What a statement with which to live my life.
Fortunately I am able to unpack it:
-as if anyone deserves AIDS (or cancer or heart disease or diabetes)
-as if disease and illness discriminate
Following a “massive stroke” my beautiful friend of almost exactly fifteen years has left me. Emma (short for Emerald, the colour of her eyes) dropped to one side, sprawled on the floor, and let out a yell worthy of her Siamese ancestors. Now my breaths draw up sobs and tears as the quietest kitten of her litter, who later went on to bite quite mischievously, won’t be waking me up tomorrow morning. I love you Emma.
Facebook and Twitter have become my primary means of internet communication as of late but there is within me a desire to give my writer’s block the angioplasty treatment it may need. In the meantime, evidence that I have continued my love of photography:
If I have learned nothing else about my bipolar II today, it is that I am certainly not the only one in similar circumstances who has found photography to be a healing past-time. Facebook is teeming today with some of the creative works of the bipolar support community.
Scrolling through various blogs and web sites I have also seen confirmed that we face many of the same risks to ourselves as my fellow survivors of childhood abuse, sexual and otherwise, most pointedly suicide. Which doesn’t make me suicidal. Just so you know. It’s just one of those options I have kept in my back pocket since it seemed clear, however wrong, that I would be dead of AIDS-related illness before the 90s were finished. Of course it’s also a tragic reality among those who suffer from post-traumatic stress disorder (PTSD), as we have heard about too often in connection with soldiers returning from Afghanistan or other battle-weary countries.
To be frank I am feeling very optimistic about my process right now. My p-doc is closely monitoring me as I add another “head med”, as I call them, to my cocktail of HIV, diabetes and bipolar medications. Spring has, for many years, been a time of hypomania which I used to refer to simply as an absence of depression. But it got much worse than a passive absence. When the cat (or black dog) is away, well…I played alot. Absent of depression, present with feelings I thought I could control, a deception of self that alcoholics often talk about, too.
I have often described the feeling of hearing the Bipolar II diagnosis, and the ways it fits me, as a day of sweet relief. It was difficult enough to live with a lifetime of, let’s say, ultimately poor decisions; I was glad to hear a biological explanation for them It doesn’t absolve me of everything but I have more compassion for myself and others.
Anyway the new med seems to be helping a lot. There are fewer sleepless nights, especially deliberately sleepless nights and I’m back on an even keel that I have experienced many times before on this journey.
Here is a series of three recent photographs taken here in Toronto, Canada, which I call Walking past colours
I’m very close to finishing the book Survivor – Auschwitz, The Death March and My Fight for Freedom by Sam Pivnik and some two-thirds of the way through I was jolted by this passage:
We could have run, could have made it, could have reached the welcoming arms of the British, who surely wouldn’t fire on scarecrows wearing the stripes of a concentration camp? But we didn’t. None of us. And it’s something I’ve read about since in the memoirs of other survivors. The years of terror, of barbed wire, of electric fences, they never leave you. You turn in on yourself, hiding in the only Hell you know. Why? Because out there, in those fields and woodlands, across the ploughed farmland of North Germany was a world I didn’t know at all. I was just thirteen when the Wehrmacht invaded my homeland and in a way my life had been put on hold ever since. In a word, I was too scared to run away.
Almost an entire shelf of my book cabinet is stocked with various accounts of the Holocaust, a collection I started with Primo Levi’s Survival in Auschwitz on the recommendation of a psychiatrist I was seeing for post-traumatic stress that followed a serious accident in 2003.
While the ‘woulda, coulda, shouldas’ of Pivnik’s experience differ greatly from my own, I recognize my own mindset in how I processed difficulties in my childhood. (By the time I was Pivnik’s thirteen years of age, I had experienced this example of the drubbing of a head teacher/principal in elementary school and the sexual abuse and subsequent exploitation at what I would now recognize as a sexual cruising area.)
I have long since absolved myself, intellectually at least, of any guilt in these matters. However Pivnik’s laser-like identification of lingering fear - my fear, too, of the world – has amazing resonance with me. It’s not the first time I have named fear as a foundational part of my emotional operating system, and I could quantify it in reviewing the hypomanic behaviour which has characterized my history with bipolar II, but to read Pivnik’s account is to affirm how I can relate my experience with what has followed.
(I still aspire to writing my life story, such as it is, told only in fits and starts in this blog.)