“Grief is a process where nothing remains the same, even the big stuff, and none of it, sadly, fits back inside that old, comfortable box.” – Peg Rousar-Thompson
A few years ago, fearing that I may be suffering from the depression that is common with Parkinson’s disease, I went to a therapist for a brief time. This was about the same time I had started to write, as a way to fill the hours I suddenly found myself awake for in the middle of the night. After a few sessions, the therapist and I agreed that I wasn’t depressed. If anything, I may have been suffering a slight case of anxiety, and by writing I was probably already engaged in the most effective therapy.
Our time together was extremely helpful anyway, if only for a very revealing exchange early in the first session. I was trying to explain what I was going thru, when I said “I don’t want to sound like I’m feeling sorry for myself, but …”
She stopped me in mid-sentence. “Why don’t you want to feel sorry for yourself?”
I stuttered and stammered, when she said, “Why wouldn’t you feel sorry for yourself? You’ve got Parkinson’s disease.”
I was stunned. It’s not that I hadn’t felt sorry for myself before; I had, plenty of times. After all, I was only in my mid 40s when I received my sentence, my diagnosis. It’s just that it hadn’t occurred to me it was okay to feel sorry for myself. I think this was when I started to understand the difference between grief and self-pity.
They say then that one of the first things people go through after being diagnosed with Parkinson’s is a period of grieving, or mourning. I think this is common for the diagnosis of any chronic disease. Suddenly you are flawed, and the image you held of your future self is dead. With a sentence of Parkinson’s comes the awareness that things are going to be different now, and that the days still left will be days of diminishment and loss. It’s only natural to grieve for these losses.
There are also the expectations of how one is supposed to behave under these circumstances. To understand these, one only needs to stand in the line at the supermarket and read the headlines of the National Enquirer.
One of the stories the Enquirer has been most successful with over the years has been the famous celebrity stricken with a terminal disease. The story always follows a similar arch – how tragedy strikes when least expected, often times just as the celebrity has finally found some peace in their life, then on to the courageous and inspirational struggle, complete with some short-lived triumphs, followed by the shocking photos of how the once-beautiful icon we all remember has decayed once that struggle goes south, through to the brave final days, followed by death and memorial. These stories are as sadly predictable as they are inevitably true –whether it’s Patrick Swayze, Christopher Reeve or all the way back to John Wayne.
The reason these stories sell so well is the meaning we derive from them. It’s the same story that we see played out amongst those we’ve loved and lost. Whenever someone close to us is sentenced to a prognosis of a terminal or incurable disease, we react the same way the Enquirer acts – we rail against the senselessness of it all and then take inspiration from their “brave” fight or their “positive attitude”. It’s all a part of our attempts to find some meaning, to make some sense out of what appears to be evidence of the chaotic randomness and fundamental meanness of existence. It’s the same reaction to the awareness of our own mortality that drives us to the belief in an afterlife and the creation of personalized images of Heaven.
Then comes the time when this “senseless” and “tragic” fate becomes our own life sentence. Having seen this story play itself out countless times before, it informs the expectations we have of ourselves, and also the expectations of those around us. It doesn’t take long to realize what a burden these expectations add. And, if we stop and think about it honestly, we’re surprised to admit how much importance we place on how we are perceived by others.
In the first days after being diagnosed, I promised myself I’d approach my newly defined fate with courage and dignity, resist the urge to ask myself “why me”, maintain a good attitude, and make the best of my remaining good time. This sounds great, but in reality, I was a wreck, completely overwhelmed by and obsessed with my condition. I anguished and brooded over the appearance of every slight symptom, such as the subtle and constant presence of a small amount of saliva inside my right cheek, attaching levels of importance to them that now seem laughable. But the zenith of my self-absorption was reached when I realized how impatient I had become to having to listen to the seemingly insignificant problems of friends and co-workers. As I half listened to them, I found myself thinking so you’re going through a divorce – it could be worse, you could have Parkinson’s – so you have advanced Rheumatoid Arthritis – at least you don’t have Parkinson’s like me. I finally listened objectively to myself and realized what a pathetic self pitying ass I had become. First, it was so early in my diagnosis that the disease was little more than a minor annoyance, and second, I realized that just because of my so-called personal “tragedy” that the rest of the world didn’t stop, and there were still real people out there with real problems, living real lives. This may sound painfully obvious, but it came to me as a major epiphany, and jolted me at least partially out of my dark clouds of self-absorption. Unfortunately, I landed in the even darker and more dangerous clouds of denial.
This denial was manifested in my approach to work. I found myself in charge of a large project that wasn’t going well, and, in fact, needed to be halted and re-evaluated. But I was going to be damned if I let that happen, and, despite having an hour long commute at the time, I was the first of my team in the office in the morning and the last to leave at night. I invested so much of my time and energy that when things didn’t go well, which they most frequently didn’t, I’d find myself awake at 2:00 AM on my laptop working until 4:00 A.M. This was at the same time I was early in my diagnosis and my neurologist was attempting to determine the right mix of medications. The primary drug in the early stages is any one of a variety of dopamine agonists, drugs that are intended to trick the brain’s dopamine receptors into thinking they are still receiving signals even though Parkinson’s has destroyed the transmission. These drugs can have significant side effects, and only through trial and error can the right dosage of the right medication be determined. Chief among the many potential side effects of dopamine agonists are sudden and frequent attacks of daytime drowsiness, and feelings of dizziness and nausea. I remember on several occasions, shortly after taking my morning dosage of Mirapex, the first dopamine agonist subscribed for me, shutting the door to my office and putting my head down on my desk and closing my eyes, waiting for the room to stop spinning. This plus the daytime drowsiness that was already evident by short nights of sleep and an hour long commute made for a bad time to be in denial.
Then came the inevitable moment that the project, despite my best efforts, reached what in hindsight was the only logical conclusion it could have reached: it was cancelled. My reaction was devastation and depression, and, after a couple of weeks when I was finally able to put some distance between the project and myself, I realized was about more than just the project’s cancellation. I realized that all the work, all the stress, all the obsessive attention I paid to it were ways of not thinking about Parkinson’s, and I realized that not only was I in danger of working myself to an exhaustion that had no possible good ending, I was also spending months of valuable time obsessing over something I had no control of – as a means of not obsessing over something else I had no control over, that being Parkinson’s.
So if self pity was turning me into an unfeeling and insensitive ass, and denial was threatening to kill me, some kind of balance needed to be reached. This is where the therapist helped me, and when I think I started to understand the difference between self pity and grief.
Grief, I think, is a natural and healthy response to loss. It is the questioning of how and why, and even when the answers that come may not be satisfying, maybe aren’t what we want to hear, it is a necessary component of finding the truths buried within our losses.
Pain is a byproduct of loss, and self pity is a natural response to temporarily dull the anguish it causes. But wallowing too long in self pity is to treat the symptom but not the disease.
When I started writing, I understood none of this. I was just trying to find my way through the darkness of those sleep deprived nights. I still don’t understand much about pain and loss and grief and self pity except, I think, that each are naturally occurring phenomenon and need to be dealt with. I now understand that writing was and is, for better or worse, my way of dealing with these things, and, it turns out, of dealing with just about everything else. I now find myself compelled to write, usually without understanding why or what the Hell I am trying to accomplish.
Writing has at least provided me with a mechanism for framing some of the questions – whether I eventually stumble upon any answers remains to be seen. I make no claims about the quality of my writing and have no illusions about uncovering any profound truths – heck, half the time I am challenged to put even one coherent sentence together – all I know is that, for now, at least, this is what I do.