I Am Not Suffering With Nor Afflicted by Parkinson's

Written in squiggly letters, Vern Turner scribbled the following just before Christmas 2009:

"About 19 years ago I got up in this group and said "Please pray for me." I have Parkinson's disease. I am not suffering from Parkinson's Disease, I just have Parkinson's disease. I am not afflicted with Parkinson's disease. You live long enough and you get something. I got Parkinson's disease. I could have gotten something else but I got Parkinson's disease."

Language communicates more than simple meaning. The words we choose and use to describe ourselves, our diseases, and others also project our attitudes and beliefs. Certain words evoke certain reactions.

Take the word “should”. “You should try my neurologist.” It is difficult to use the word without communicating judgment, even if unintentional. It is directive, a command. It implies that the speaker knows what is best for the hearer. Even if true, it can leave an arrogant or even paternalistic aftertaste. I learned what danger lurks behind that simple word in discussions with my adult children. I noticed they respond less than eagerly when my “suggestion” was phrased with the word “should”. Sometimes there was a noticeable wince when that word was used. Sometimes there was serious push back. You see the word has an invasive potential tone. What can you say in response when someone says you should do something? You have two choices. You can comply or disagree. There is limited opening for discussion. Changing language takes away the value judgment that has the effect of putting the hearer in a corner. How different it sounds to say, “If you need a second opinion you might want to try my neurologist”. I decided some time ago to avoid the word “should” wherever it might be misunderstood. Even in my professional life, I prefer, “I recommend…” It leaves one feeling humbler when you avoid “should”, and communicates greater humility as well.

In a similar way, consider the words we, and others, use to describe Parkinson’s disease. Whether used by me or about me, I can accept the neutral statement, “I have Parkinson’s”. Even though I am years behind his PD progression, I agree with Vern Turner. Using words like ‘suffering” or “afflicted” or even "coping with" communicates something different than what I want to be said by or about me. I am not a victim, survivor, martyr or particularly brave about my lot. And while I do want to have courage and be as positive as possible, I wish to leave vocabulary describing the more pitiable state to those who truly are suffering and afflicted. Yes, PD does bring unpleasant and sometimes painful symptoms. There are uncontrollable and debilitating consequences triggered by the disease and medications that treat it. Still, I speak for at least some people with Parkinson’s when I opt for referring to being “challenged” with PD. It frames the path I walk with others in positive but realistic terms.

I am learning to choose my words carefully, especially when describing something I need to wrestle with daily.

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.