Just Leave Me Alone!

When life’s circumstances seem to trap you, squeezing you in their grip, applying increasing pressure and demanding a response to questions that are bombarding your universe like incoming meteors, everything gets messy.

We feel out of control (as if we ever were). Death, disease, disability, discouragement, depression, disorientation or disaster - and these are just the things that start with the D - threaten our daily existence. We find ourselves scrambling for cover, digging a foxhole, curling up in a ball, or hiding our eyes to shut out the fear, the pain, the inevitability.

“Just leave me alone!”, we shout to no one and nothing in particular. Can’t we just make it all go away? Can’t we just fix it?

The answer is “No”. We might be able to deny the situations we face for a while. Difficulties might be delayed somewhat. But ultimately, we must deal with the tough stuff, face our fears, fight back, accept suffering and sacrifice as necessary, or at least inescapable, parts of living.

Lately, too many friends are being confronted by the harshest of realities; difficulties from divorce to dying, and a veritable invasion of other sad events. Sometimes, like missiles, these struggles come in clusters, as if the destruction caused by one is not enough.

When it all seems too much, too hard, where do we turn? The Greek philosopher Epictetus said, "We cannot choose our external circumstances, but we can always choose how we respond to them".  But let me add, doing life alone, especially in the crucible when heat and pressure so easily overwhelm, is not the answer.

We are designed for interdependence, relationship, community. We cannot hope to prevail on our own. We need to share the burdens, the pain and the tragedy, especially when they don’t make sense. We need the freedom to ask” Why”, while knowing that there is no obvious answer. We need caring listeners to be our mirror. We need allies to help us fight back, maintain the hope regardless of the odds. But in the process we must risk being misunderstood, rejected, and disappointed by others. After all, we are far from perfect ourselves.

P.S.  While drafting this post I felt alone. I had planned to be attending the World Parkinson's Congress in Japan next week.  I was looking forward to being there mostly to spend time together with friends from around the world who are part of Parkinson's disease community. Unfortunately, I will not be there.  Maybe 2022?  In the meantime, let's stand together. As Michael J Fox said,“We may each have our own individual Parkinson’s, but we all share one thing in common. Hope”

Do You Really Understand?

I listened carefully from the other room where I was enjoying time alone with my one year old grandson, Patrick,who kept up a steady string of very meaningful blurble . Christmas occasions offer a cacophony of words and sounds. From the unrestrained and gleeful shrieks of small children who have discovered the bounty left behind by "Santa", to the animated adult banter accompanying a game of Scattergories. There are warm words for family and friends and heartfelt expressions of appreciation for gifts given out of love. Sometimes there is a tearful outburst from an exasperated child, often accompanied by a yawn. And then there are the inevitable "discussions", that might never take place normally, during which voices are raised and opinions expressed in more dramatic and emphatic terms than might otherwise be the case. Blame it on the annual peaking of expectations, or the prevalence of liquid courage, but this season as the amazing potential to highlight our embarrassing lack of discipline when it comes to the use of words.

Perhaps this is why Christmas day left me thinking about words; specifically, words to avoid in the context of Parkinson's disease.

At the top of the list are the supposedly sympathetic words, "I understand". These words are almost always inaccurate, and often communicate exactly the opposite of what they mean. How often have you heard that phrase and silently reacted, "Oh no you do not!"?  How can someone really understand the physical manifestations of the ever-dogged PD? Even some of us who are experiencing this neurological nightmare have difficulty understanding others who share it . This phrase intended as an expression of attempted empathy is truly a presumption; a facile, throwaway line that betrays our ignorance, and sometimes our arrogance. In fact, it may be unintentionally dismissive of the person's unique experience and feelings. While I fully acknowledge that the speaker's intention in using these 4 syllables is rarely to harm the hearer, these words can easily be hurtful. Is not it more honest to admit, "I cannot possibly fully understand your circumstances... feelings... pain... fears..."?

"I understand" is a statement of fact, like saying, I understand Einstein's theory of relativity".  Applied to another person it is often, at best, an overstatement.  For myself, I certainly need to be more sensitve to my use of such phrases.

Since being diagnosed with Parkinson's almost 4 years ago now, I have become sensitive, even hypersensitive, to one simple fact: I will never fully understand another human being experience of loss or pain. Therefore, to say, "I understand" is to trivialize, or at the very least reduce that person tothe size of my own limited experience. I am not sure that healthy people understand this. Is it so easy to understand?

I know how it feels when someone who I know glibly draws his or her conclusions about my life by making that unsustainable objective statement, "I understand". My choice these days, when I am tempted to use that fateful phrase, is to replace it with, "I would really like to understand more. Is it okay if I ask you some questions to help me with that?"

All of us, even Patrick with his one-year-old gibberish, want to be understood. Rarely do people feel understood by being told that they are.