Diagnosis Day

Many details of the day in March 2000, the day that divided my life into the before and the after, are lost to memory. Some things however stand out with absolute clarity. It was cold in New York City, cold but sunny, that watery kind of sunlight that for some reason feels colder than if the sun was behind clouds. It was lunchtime and, in spite of the cold, people were sitting on benches eating their sandwiches and taking in what little warmth the sun had to offer. I wasn’t thinking about food as I moved through the crowds of people on my way to the neurology department at Beth Israel Medical Center. I was, in fact, doing everything possible not to think at all, especially not to think about the reason for my appointment that day.

Some ancient tribes use rituals to mark important rites of passage. Crossing over from childhood to adolescence, marriage, the death of a loved one – these pivotal events are acknowledged by the community as a whole. The ritual often includes some kind of external marking – branding, tattoo, scarification – an outward symbol signifying that the individual has moved from one stage of life to another; he or she has gained a new status and treatment by the community changes accordingly. During some rituals the initiate is given a new name further emphasizing the transition. Then there are the transitions that aren’t expected. A friend, shortly after the death of her infant daughter, was troubled by the fact that there isn’t a word in English to denote her new status as a mother who has lost a child; there is a lexical gap in our collective vocabulary. We have a word for someone who has lost a spouse, and a word for a child who has been left without parents, but not one for a parent who has lost a child. She needed that nonexistent word, needed a marker, an outward symbol, something visible to the world to show that her daughter’s death had altered her in a fundamental way.

The first of the symptoms that brought me to that appointment had appeared several months earlier, symptoms that I couldn’t ignore, or explain away. Initially it was a tingling sensation that felt like little electric currents radiating down my left arm. Eventually the tingling sensation was replaced by a slight tremor in my left hand. There were other symptoms as well, symptoms that on their own wouldn’t amount to much, but taken collectively left me unable to ignore that something was wrong, that for some reason my body had begun to betray me.

Perhaps the rituals and the words we don’t have in our common vocabulary tell us more about who we are as a people than the ones we do have. A woman I know was a practicing Catholic, yet she wore a Star of David around her neck. Her son who suffered with schizophrenia had committed suicide when he was in his early twenties. Through the weight of her grief she knew she needed more than the traditional Catholic wake of three days. A friend suggested the Jewish rite of sitting shiva, which lasts for seven days. The Star of David that she has worn ever since acts as an outwardly visible statement of both her grief and her gratitude.

My primary care physician referred me to a specialist, a neurologist, who ordered lab tests to rule out possible illnesses. In return appointments between those tests, he never spoke to me about the various potential outcomes. In some ways it didn’t matter; I already knew what the outcome would be. My fiancé, trying to remain positive, periodically brought up alternate endings to the story I had already finished writing in my head. This was one time I wanted him to be right. Which one of us was right remained to be seen, either way, I wanted a doctor who actually talked to me so I found another neurologist, one who specialized in movement disorders.

A few weeks after September 11, 2001, a friend and I had a conversation about the events that followed that day. We had met through an online forum for people with neurological illnesses, both of us newly diagnosed. I commented that those weeks after 9/11 were the first time since my diagnosis that I didn’t feel like such an outsider; that for once I was in sync with the people around me. Others suddenly felt what I felt every day, that we have much less control than we think we do. Life is more tenuous than we like to think it is.

As I sat in the waiting room of the new neurologist’s office, I tried not to stare at the elderly couple who arrived shortly after I did. The woman, obviously the patient, was in a wheelchair. Her entire tiny frame was shaking and it was difficult to understand her speech when she tried to answer a question from the receptionist. Don’t look, don’t look, don’t look, a voice in my head repeated; the imperative having nothing at all to do with politeness. I tried to find somewhere else to focus my attention, but there were no windows to look out of and I couldn’t muster the interest to dig through the stack of magazines in search of something compelling enough to take my mind off of the scene in the waiting room. I quickly forgot about the couple however when my name was called and I was led down a long hallway and into an examination room.

The exam itself wasn’t too much of an ordeal, as far as medical exams go. Nothing painful; since I’d been through the gamut of lab work already, there weren’t any needles involved. When the doctor came in she explained that the test she would use as a diagnostic tool consisted of measuring a number of specific physical reactions. Because the test is also used as a means of tracking progression, I would come to know it well in the years ahead, so well in fact that I would eventually have most of it memorized. At one of my future exams I would tell my neurologist that it made me think of Michigan J. Frog from the Warner Bros cartoons, the frog with the top hat and the cane singing “hello my honey, hello my baby, hello my ragtime gal.” At that future exam my neurologist would laugh and it would become one of our jokes, part of the shared language that develops over time between patient and doctor.

Late into that first exam, the receptionist popped her head in to ask the doctor how much longer she would be with me; she was concerned about the elderly couple who were still in the waiting room. They had been waiting a long time, what should she tell them? “Tell them they’ll have to wait a little longer,” my doctor replied, “we’re not quite finished here.” That was the moment I fell in love with my neurologist. I liked her from the moment she greeted me, and her response to the receptionist sealed it for me. This was my doctor and I knew I could trust her to take care of me. It’s comforting to get the message from your new doctor that I’m not going to just give you the bad news then send you on your way. I’m in your corner. I’m on your side. I’ve got your back.

The mention of the waiting room reminded me that my fiancé was going to meet me at the doctor’s office after he left work. He had probably arrived and was there in the waiting room. I thought briefly about asking if it was okay if he came into the examination room with me. The question was forgotten as I watched my neurologist walk over to the sink to wash her hands. That’s when I knew with absolute certainty that the answer to the question of what was happening to me was the one I had been expecting all along. How did I know? Well, she didn’t really need to wash her hands. I know that it’s protocol and I’m not saying she wouldn’t have washed her hands if she wasn’t about to lay a life changing diagnosis on me. It’s just that I knew, watching her walk to the sink, that she needed those moments to prepare herself. She was about to tell a 38 year old woman that she was fairly certain that woman had Parkinson’s disease.

It was March of 2000; my life had just divided into two distinct halves – my life before Parkinson’s and my life after. Of course the full impact of what that meant didn’t sink in on that day; even so, there is no denying that on that day my life changed irrevocably. I was no longer the person I was before. I had been initiated, a new member of the club. Unfortunately, this was a membership that I could not turn down.

The membership base for this club is much broader than just those living with a chronic illness; it includes all kinds of people dealing with all kinds of painful, sometimes tragic events. The only criteria for membership is that as the initiate, you have experienced something that changes you so deeply that forever after you will think of yourself as two people – the person you were before the event, and the person you became after.

There is no membership handbook for this club, nothing that might have prepared me for what was to come. In some ways this is probably for the best, better to discover these things over time. I certainly wouldn’t have wanted to know all of the possible repercussions just then. If a membership handbook did exist, it might say this – There are no membership dues, but you will pay dearly for joining. You will change in ways that you cannot imagine, and these changes could result in losing a great deal – your job, your friends, your spouse, your ability to feign interest in pointless conversations. People may not understand the person you will become, the new you, the person who has been through the fire.

The handbook would also say this – You will discover that you are much stronger than you ever imagined. You will come to learn to differentiate between those people and situations which build you up, and those that wear you down. You will find yourself walking away from those things which you recognize are not worth your time and effort. Perhaps for the first time, you will understand what “worth your time and effort” truly means.

Perhaps the most important lesson you will learn is this – the old adage that in the past you threw around without much thought really is true – life is short. Other people may mouth these words, but you know exactly what these words mean. You know this because you have learned the hard way that control is an illusion and that life can change on a dime. What you choose to do with this knowledge, well, that of course, is up to you.

But there was no handbook, and these lessons were waiting for me in the future. I certainly didn’t gain all of this knowledge on that March day ten years ago. Instead I walked out of the doctor’s office with my fiancé. The day was still cold and sunny, everything looked the same, but nothing was. We looked at each other until he finally broke the silence, asking me what I wanted to do. I didn’t have the faintest idea. I turned away from him and watched the crowds of people going about their day as if nothing had changed. For them, it hadn’t, for them it was just another day as their lunch break ended and they returned to work. My only job for that day was to get through it. I looked back at my fiancé knowing suddenly what I wanted to do. I asked him to take me to a bar and buy me a shot of their most expensive single-malt scotch. He put his arm around my shoulders and we started walking. What all of this meant for me, and what all of this meant for us, the lessons I would learn, the person I would become, all of that would have to wait.