Caregiving Backstage / Reflections

Reflections ~ The Wizard Behind my Curtain

Originally published September 15, 2012

Over the past several weeks I have had conversations with several people who have read my little book, Who I Am Yesterday. Some of those folks reported tears, a few laughs, and a bit of wonderment. I have also engaged in a number of conversations with online friends who say something along the lines of how amazing it is that I manage to keep my sense of humor while being a caregiver 24/7. I admitted it was a process. Then I thought about it; that was only a partial answer, and not worthy of the person who asked it.

In the classic film The Wizard of Oz Dorothy and her friends suffer through many trials and tribulations until finally they reach the palace of the fabled Wizard. With the help of Toto we discover that the wizard is nothing more than a little old man parked behind a fancy machine trying to scare the dickens out of Dorothy and her friends. As it turns out, he has real and useful advice to provide each and every member of her party. My wizard was humor; it just took me awhile to find him in the cave of my mind.

As mentioned in my little book, I am bi-polar. High-functional, un-medicated, but, nonetheless, bipolar. For the vast majority of my life I have fought depression, major migraines and the exhausting rush of “I can do anything in the next 12 hours.” No, you can’t; there is a tall cliff to fall off the moment the high starts to dissipate. And that crash is always hard.

In the early 70s this disease was not easily diagnosed. Even today it goes unresolved because bi-polar people rarely talk about the highs; they only see a doctor when they are depressed, if at all. My doctor of the time decided the best way to handle my “anxiety” was to pump me full of Valium. Lots of it.  Mix that with a little alcohol and a bad marriage and, well, you get the picture. Depression doesn’t begin to describe the trip I was taking down the rabbit hole.

Then, one day, I had an epiphany. I realized that the sun was going to rise the next day whether or not there were singing birds and blooming flowers in my little corner of the world. The globe would not stop spinning if I couldn’t make the bills, couldn’t straighten out my marriage, couldn’t find and murder the demons that pursued me. Every last Valium in the house went down the toilet – yep, cold turkey. I waited a month for the massive depression to lift and to have a clearer vision of my world and then filed for divorce.

Watershed though it may have been, it was only the beginning of the journey. I learned that my “condition” was not something to share. For whatever reason, the people I allowed even vaguely close to me during the next few decades found that weakness and exploited it. A person who is susceptible to depression can be easily manipulated and controlled. You learn the hard way to sew that curtain tight and not let a soul know what’s behind it. Behind that curtain was a very dry sense of humor; often times it was deliberately opaque. My little wizard, building the walls to protect me.

Fast forward some 20 years or so and I meet my current husband. He was an incredibly brilliant man who, unknown to me at the time, was suffering from his own mental demons. In retrospect, perhaps that was part of what made us soul mates. Part of what gave us such insight into each other’s worlds. He saw the bi-polar tendencies and the depression even when, by then, no one else could. One professional that I knew at the time told me that he knew I was bi-polar but in all the time he had known me he had never seen it. I fired back, “And you never will.” My new found friend waltzed into this fortress and clearly identified the cracks in my wall. Instead of using those weaknesses, he taught me how to control them. It was he who taught me how to spot the “rising tide” so that I could slow down and make the final leap off the cliff so much smaller and easier to handle. After many years together it was with his help I conquered the depression. But, my little wizard stayed with me, growing into a merrier, mellower sort of fellow.

It was sometime during those years of growing that I was introduced to a movie by a different friend. It was a movie that I consider to be a perfect model of depression and how to survive it: The Edge with Anthony Hopkins. Briefly, the plot involves a billionaire (Hopkins) his fashion model wife and two other men who fly to a remote Alaskan lodge for a photo shoot. During a plane trip to scout out some special photo opportunity the plane runs into a flock of birds and crashes killing the pilot. The three survivors are faced with surviving in the Alaskan wilderness while being pursued by a Kodiak Grizzly. Some of the scenes are rather graphic but there are many gems of wisdom from the screen play that impacted my thought process. We’ll save some for other conversations. The scene I have in mind for this article is at a point where one survivor has been attacked and killed by the bear. A rescue plane has flown overhead but does not appear to see them. Hopkins’ companion starts to break down, bewailing the probability that they will never be found, the bear is going to kill them and no one will ever know what happened. Depression 101.

In the face of his companion’s meltdown Hopkins’ character says something out of the blue: “Fire from ice. Did you know you can make fire from ice?” He has to repeat himself a time or two. This actual quote is one of those gems I want to save for later. However it does get his companion’s attention at which point Hopkins is able to explain something crucial. The goal is not to get back to the lodge; the goal is to survive today. I am sure there are any number of professionals who try to tell their patients that they only have to get through today. What happens in a moment like this is you are presented with a graphic illustration of what it means to “get through today.” You cannot change the circumstances, but you can survive them. Do not fight the quick sand; find a way to float. Keep floating long enough and eventually you will find a way to the lodge.

Again we move forward many years and suddenly, the world I had grown so comfortable in, the world I shared with my best friend and husband began to unravel. Within a few short months of noticing very real changes in his mental capacity his doctor confirmed vascular dementia. Some of the details of my mental process during this time period are provided in the book. Suffice it to say here that I became a basket case. My whole world was crumbling and I had no notion of what I could do to stop it. Then, with the help of some friends, something interesting happened; I realized I had a goal. Get through today.

It was probably some four or five months later along this new path that I started to put pieces together that would do more that “get through today.” I realized that we could still joke, enjoy some of the things we had once loved and live a life rather than just survive. Not the same life, but a life that could be lived and enjoyed. That is when my humor, my beloved little wizard, came back home. This time that humor was not a shield, it was a well seasoned support. And so my friend, soul mate, lover and husband again showed me the path to stronger living. Even with a failing mind. I manage because I don’t “manage,” I simply live the life we have the best way we can and with as much humor as we can find. No, I am not a paragon of virtue that never has an issue and always soldiers on.  But, for the greatest majority of our time together, we do just fine. Click, click, click, “There’s no place like home.”

For nearly two decades my husband and I had spent numerous hours talking about philosophy, religion, science, human creativity, the vast reaches of the universe and the actions of the smallest particles known to man. He would gently nag me from time to time to publish, to put my ideas down on paper, to express those things that my inner eye had seen, what I had felt and learned. I always said, “some day.” Partly due to my recent experience with his illness I have been driven back to those old notes and half finished pieces of manuscript. I have watched as his mind changed and studied whatever seemed relevant to try to understand the way his world was changing and what impact any previous mental issues may have now and in the future. So, I learned more, thought more, saw more. Thus, as he wanted, I will write. If I can no longer share my thoughts with him, I will do as he asked and share them with whoever will listen.

Thank you for visiting my blog and watching my journey. Perhaps my next publication will fascinate and interest you in some way. I certainly hope so; you will be sharing some parts of the glue of a very special relationship.

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