This Is Why I Write

It was remarkable, daunting, and almost literally stunning, after having lived with secrets that had been trapped in my body for decades, to have her — my body — suddenly vomit all of those secrets out as if she’d received a double dose of Ipecac for the Brain. It had been startling, to be sure, when it happened, and I don’t know how long the event lasted, or really, even, what exactly it was that triggered it.

Shortly before the memory-dump had occurred, I’d been chatting with one of my sisters — third from the youngest in the family line, already a doctor by then, with kids of her own — chatting about the final experimental ‘treatment’ I’d just received for the disease my body had been generating for the previous few years, “a rapidly advancing case of diffuse progressive systemic sclerosis,” AKA scleroderma.

The treatment I’d been receiving was experimental. It was called extra-corporal photopheresis. One could only be a part of the study if one had not previously taken any medication in an attempt to mitigate the progress of the disease. I had been offered medicine before, medicine that had come with the suggestion that “it might help slow the progress” of the disease… no pain relief, no cure, but, hey, it did come with the promise that I might be able to live a little longer while still being in a massive amount of pain and crippling… I’d declined that offer.

“You can keep your medicine”, I’d told the doctor, after reading the three-foot-long list of side-effects. I would have, quite literally, preferred to die because death would have been an actual improvement.

The physician running the experimental program I’d been recommended to by yet another doctor, after vetting me and determining that I was, indeed, a pharmaceutical virgin, told me that I could participate in the program; I could officially become a guinea pig. There was one caveat, though, that he wanted to explain to me: if I decided that I couldn’t tolerate the treatment and left the study, then I would, most likely, die quite quickly.

His little caveat was my ace-in-the-hole. This was my chance! I was feeling all “Give me liberty or give me death,” and the experiment seemed like a perfect fit despite the fact, that, as he had told me, literally no one had been cured thus far. I was fine with those terms. I just wanted the situation I was in to be over with in whatever way that could be hastened.

As it happened, though, I was the unexpected. I was the one person in the study whose skin softened, whose muscles relaxed, whose lungs began doing what lungs are supposed to do… and it happened quickly… but, knowing that everyone else who’d left the study had died, I was asked to stay on. As uncomfortable as the treatment was, I agreed. These people had worked hard to change my life… they’d effectively given me my life back; I figured I owed them and the only cost to me was losing two days of work. It seemed more than fair.

About a year later, the drug company funding the experiment shut the study down. All the guinea pigs would die… but would die quickly. I knew that I wouldn’t die. I knew the disease had left me; I knew it in my bones.

Coincidentally, the day before what would be the last treatment, my father died. I’d been at work when my daughter had called to give me the news and — I still don’t know why this happened — when she told me, my body, seemingly all on its own, let out a blood-curdling cry that was heard throughout the entire building. I sat there in awe of what had happened. It was as if I’d had nothing to do with that noise. Nor did I know why it had happened. Co-workers came running from every direction to see if whoever-that-was-that-was-wailing was OK and I stammeringly assured them that I was, and told them that my father had died. Most everyone nodded quietly as if they understood. I certainly didn’t. I’d known my father was dying. His death had come as no surprise… and yet… some part of me that I was not in touch with was clearly very deeply and operatically distressed.

When I arrived home after my final treatment, I discovered the previously mentioned sister waiting for me outside the townhouse where I was living. My daughter, who’d come to be with me for my last treatment and had to return to classes, had called her in for the support she’d felt I’d need. My sister and I had been standing in the parking lot, outside my front door, her kids sound asleep in their car seats. We were having a conversation of some sort that had led me to make a casually vicious comment about our mother’s father, an utterly obscene man who’d thought nothing of sexually harassing his granddaughters. My sister made a what I imagine she’d thought to be a casual reference to our father’s inter-familial sexual tendencies and, when I looked back at her with an expression of what was apparently utter blankness, she said the words, “You mean he didn’t get you?”

The next thing I was conscious of was that I was inside my house, alone, standing in the kitchen, near the front door, which, presumably, I’d just come through. I was leaning against the table, ‘watching’ a kind of newsreel presentation spool out seemingly before my eyes. It was a mental film strip of countless things I did not want to be seeing and did not want to know about. There were things involving my father and my mother and another sister and my grandparents and men… a lot of men… and what looked like sacrifices being made. They were like snippets of waking nightmares that reminded me of the horrors that had tortured my sleep when I was in my teens. It was devastating. I felt fortunate that I could slide without damage to the floor where I sat for I don’t know how long, stunned.

I was still on the floor when my husband returned home from work probably a couple of hours later. I’d been re-observing in my mind’s eye the things I’d just seen, watching many of the memories expand, much in the way that sponge animals expand when you drop them in water. Snippets of visual memories became newsreels. It was overwhelming.

Eventually, I called my siblings about the father stuff. In retrospect, I don’t really know why I had made that determination. I suspect that I may have wanted validation because that’s what I got. I hadn’t been the only one. Then I called my mother. I told her about what both my father and her father had done. She validated that she’d known about my father; after all, she’d been there. But she lost it when I told her what I’d seen involving my grandfather — her father — and I cannot recall the seemingly never-ending slew of words that exited her mouth except for her crying loudly: “Don’t tell me this about my father! Don’t ever say that.”

Nightmares followed then. Not every night, but frequently. Some of the topics covered went back to infancy when I’d been left for months in the “care” of my grandparents. They seemed even more dreadful than they had been in my teens. Others dealt with what seemed like some kind of blood rituals.

I sought counseling.

About two weeks later my mother’s secretary called me. My mother’s secretary had never called me for any reason. Ever. She said that she was concerned and informed me that my mother had just called her from an airport somewhere in the mid-west wanting to know why she was there.

She had flown there to be an expert witness in a trial. She’d remembered nothing.

This was not a good sign.

Mom’s mental state went downhill pretty rapidly after that but she lived another twenty years, mostly in a very nice assisted living facility. All her kids visited when they could. And in her last weeks, everyone made a point to see her. One of my brothers told me that she had a kind of leave-taking ritual and would give each of her offspring and her grandchildren a hug, saying, “I love you” to each one as she did.

On my final visit with her, she did, indeed, hug me… but said to me as she did, “My buddy.” And I guess I kind of was. I’d kept a lot of secrets for her over the years, most of them secrets I hadn’t even recalled that I’d been keeping until they all showed up that day.

Those parting words to me felt… I don’t know… odd? But they did kind of sum that relationship for me. It was certainly an acknowledgement of my place in her relationship with her husband. Considering who her father had been as a person, considering all the things he may have done to how many other children, and heaven knows what else he’d done over time that I may never have known about, I’m guessing that my mother had done the best she could with the life she’d created for herself.

The things that happened to me were not my choice. That I carried emotional wounds that had profoundly affected the way I’d lived my life is no surprise. Thanks to the return of those memories, I have spent decades getting free of a past that for most of my life I hadn’t even recalled that I’d had. All I knew when my childhood reality came to revisit me that afternoon was that until that point in time, I hadn’t seemed to have any control over myself or my behavior, that I’d made horrendous and even dangerous decisions over and over again, decisions that led to actions that I would later be appalled and confused by… but that I had seemed utterly unable to stop myself from doing.

Just this past year, in my mid-70’s now, I have finally felt as if I surely must have assimilated an awful lot of whatever it is that I embodied here on earth to learn. Heaven knows I’ve screwed up frequently in this lifetime but I’d never done it intentionally. And once my unconscious was made conscious, I worked hard, with a lot of outside help, to get to a place where I could live life with integrity. That’s why I write… to bring hope and mental support and words of courage to those folks who have been made to feel as if they should be ashamed of themselves for the things that have happened to them or for the mistakes that they have made as the result of having been damaged.

I have had to learn to own the damage I carried as well as the damage I’ve caused; to own the mistakes I’ve made; to make apologies and reparations where needed, to find dependable, reliable assistance, and to forgive myself. I have had to claim my life and embrace compassion because we, the once-broken, know better than any how necessary compassion is… and it has to start with one’s own heart.