202 in 2 Years and Still Positive About Parkinson's

CCII.   Roman numerals for 202.  It seems appropriate somehow to indicate the number of posts over the past 2 years.  While on average I try to write twice a week, there has rarely been a week when I have not posted at least one time.  Lately, a jam-packed schedule has prevented my preferences from overwhelming my duties.  Life has definitely not slowed down much and maybe picked up a little as I enter the fall months.  But I am thankful for the opportunity to share and encourage, complain and explain, as well as join the worldwide community of millions of ordinary people with Parkinson's who just want to be heard and understood.

Over the past 2 years, there have been over 32,000 "hits" by 20,000 visitors who have viewed 50,000 pages to see what Positively Parkinson's is all about.  The blog is averaging between 2000 and 3000 visitors a month from everywhere.  People from Peru to Pakistan, Israel to Indonesia, Mozambique and Macau have stopped long enough to read at least one post.

But whatever others may have garnered from this amateur effort to communicate about my partnership with Parkinson's, I have gained the most.  Positively Parkinson's has allowed me, even forced me, to be transparent about living with the disease.  It focuses my attention.  It provides accountability.  It forces me to decide how I will respond to the unwanted opportunity, PD.  It compels me to look at the "thorn in my flesh" and fully examine its implications for my life.  Writing each week precludes a glib positivistic palaver, while at the same time refusing to permit self-pity to take my life prisoner. 

I am very thankful for those of you who read my pondering prose, provide encouragement and share your own lives.  I have learned from you that:

1.       If I concentrate too much on the audience I miss the mark entirely.  Trying too hard to please the reader produces the unreadable.

2.       Real life experiences communicate better than "sermons".  I suppose that is simply a corollary of "walking the talk".

3.       Alliteration is not always advisable.  Blunt is often better than beautiful.  Cleverness can camouflage the true content.

4.       I must always risk writing from the heart.  If I am not sincere I am not trustworthy.

5.       Statistics and Comments are not the true measure of value.  Encouragement of one person is easily enough to make the effort worthwhile.

6.       In the end, I must write because it is part of me.  Therapeutic, yes.  Cathartic, certainly.  Creative expression, sometimes.  Encouraging of others, my greatest aspiration.

7.       There is no end of topics, just as there is no end of things to discover in life.  Wait until you hear about my plans for 2012!

Because of all the lessons learned I fully intend to continue with Positively Parkinson's.  I am humbled by you joining in my journey.  You helped me carry my burden.  I so appreciate your hugs, phone calls, e-mails and words of reassurance.  Many times when I have felt alone, you have sent a note to convince me otherwise.

Let's make it 303!

Leaving a Legacy

She was 85, looked bewildered and paused, seemingly groping for an answer to why she did not have a will.  "I didn't think I needed one.  I don't have much to leave anyone."  I explained how dying without a will is like going away, indefinitely, and leaving your house locked without trusting a family member, neighbor or anyone with the key.  No one can get into your home without a court order.  You have not decided who should have the right to take possession of your private domain and muddle through your personal effects.  No one has been told what you want to happen if you are not there to make that decision.  You leave a mess.  Chaos, confusion and conflict are the result of the lack of instructions you leave behind.  She nodded, silently acknowledging her failure as we began to discuss the topic that feared her most, her death and what would be left behind. 

No one likes to think about dying, or about what one will leave behind.  Perhaps it is uncertainty about what lies beyond the borders of one’s brain and body.  We have no experience with anything but the lives we have lived.  Maybe it is a dread that, besides an empty spot at some dinner table, we will not be missed much.  It could be that it is just too difficult to decide among the competing interests in, and claims to, your worldly possessions.   Given those concerns, there is some, minimal I suggest, logic to postponing the process of making a will, a permanent posthumous promise.

However, on the flip side, we have to admit that we are all in the process of leaving a legacy.  We will all be remembered, at least by someone for some period of time.  There seems to be something deeply embedded in the core of who we are that craves remembrance after we are gone.  Everyone had some level longs to leave a legacy.  And that's a good thing.  It is recognition that one is accountable for how one lives.  For some there are eternal consequences, whereas for others life provides simply temporal significance.

Age, and its cohort of diminishing capacities, has a way of focusing our attention on what it will be like when we are gone.  Life increasingly becomes a matter of what was, rather than what will be.  What, if anything, will people miss about us?  What will their fondest memories of us be?  What did we start, build or accomplish that will continue or remain?  Will the deposits we made in the World Bank of Good Things have outstripped our withdrawals?  Or will we have taken from the physical world and our human community more than we contributed to them?  Will others seek to follow the footprints we leave behind or pointed the impact they have left with discussed.

Parkinson's disease has a way of putting things in stark relief.  It is a reminder that I need to consider my legacy.  It is a reminder that I need to do my will.

The Liar in My Head

"Tell the truth now", she said, trying her best to be stern. Despite my mother wagging her finger at me, or more convincingly, waving the wooden spoon, I feared the truth more than her consequences. Spontaneously, I made up a doozy of a story in the fond hope that I would be believed, thereby avoiding any painful penalty that would otherwise be visited upon my buttocks by my father’s hand or belt when he came home from work. By the age of 12, I was a consummate liar. Feigned sincerity was a specialty of mine, nurtured it seemed by a budding acting career. It was nothing particularly nefarious, just a preteen trying to avoid the reality of his bad choices or the somewhat harsh restrictions that might be imposed by overly-informed parents. I knew that lying was wrong, but did not appreciate why. It seemed perfectly justifiable at the time, in a Darwinian sort of way.

Little did I know then that my penchant for prevarication would be perfect preparation for a career that specializes in uncovering lies. Okay, okay, I hear the chorus cries, "It takes one to know one". But, lest I be anything else but candid, as a lawyer for the past 31 years, I have come to believe that the truth is as scarce as it is sacred. It is feared much more than fostered. While the temptation to give in and tell just "a little white lie" can be overwhelming, I have learned that the truth is colorblind and critically necessary. Covering up some damning evidence, twisting a tale to suit one's convenience or contorting reality until it is unrecognizable are simply unacceptable lies. And lying makes blind fools of us all.

"I solemnly swear to tell the truth, the whole truth and nothing but truth, so help me God". Despite hearing this innumerable times, I never really understood why this oath was necessary. Leaving aside the "so help me God", as most people do, would one all of a sudden tell the truth if by habit, predisposition or self-serving convenience one was not inclined to do so? My experience in the courtroom strongly suggests that lying is often much easier than telling the truth there.

Lying to ourselves, like peeking through parted fingers supposedly covering one’s eyes, would seem rather pathetic were it not such a popular pastime. Lying to others also seems to be quite acceptable, as if integrity and honesty have been thrown from truth's pulpit by popularity. The truth for many, it seems, is not an absolute at all; it is variable, malleable and circumstantial.

How did we get this way? Was it by abandoning any moral compass for fear of intolerance? Did the lies seem preferable to watching the inexplicably harsh reality of war, famine and injustice on big screens in our living rooms?. Has the skepticism nurtured by those espousing hollow truth made us cynics who lack discernment altogether? Or was it simply the gradual displacement of truth by the allurement of lies that promised happiness.

The propensity to lie finds fertile pasture in the mind of one facing Parkinson's disease. The truth seems like a daily torture chamber of creeping stiffness that feels like concrete hardening around our limbs and unstoppable tremors that threaten a full-scale bodily earthquake. Curiously, we meet this onslaught of reality by a regimen of pills that permit us to pretend we are "normal". Truth presents embarrassment, whereas we prefer addiction to the "acceptance" extended to us because of the medication we take.

How do we deal with the truth? It is rarely popular, and sometimes fatal. But consider life without the relentless pursuit of what is true. Life is truly a cabaret, a charade, a costume party and a meaningless celebration without truth. The "truth" for someone with Parkinson's disease does not paint an attractive portrait. But we can only deal with it if we face our fears and expose the lies that render us helpless.

To pursue truth in living with PD requires that I confront the liar in my head, betraying its delicate delusions, if only to myself at first. I must listen to another source. Somehow, embedded in our souls is a still, small voice that whispers, "… The truth, the whole truth and nothing but the truth…". There is freedom in that.

7 Reactions to Parkinson’s Disease

“No question, you have Parkinson’s disease.” The neurologist casually mumbled the words like someone commenting on the weather. I just stared for a moment, then put on my best “I can deal with this” smile and said, “Okay.” Inside I was reviewing mental snapshots of my father’s free fall towards total disability with the same scourge. At the same time I was fast-forwarding to how I will tell my family, the team at work, friends and colleagues about a disease that will get worse.

What do you do when life takes a wrong turn? The sudden death of a loved one? A traumatic accident for which you are responsible? The devastating discovery that you have an incurable disease? Or any serious situation that leaves you feeling like you hit a wall?

Many if not all of us simply REACT. As with most who read this blog, life has been more charmed than marred. But, as is apparent from this blog, PD has presented some challenges. These have often left me in one of seven reaction modes.

Fight. Angry, I wanted to fight back. I did not know how or even why, but it seemed better than doing nothing. Somehow this feels like I regained some control that the disease had taken.

Retreat. Sad and misunderstood, I just wanted to be alone. Of course, this accomplished little except it allowed me to spiral down into self-pity. But it seemed better than watching the pity in others’ eyes.

Ignore. Some call it denial, but to me it was ignoring the fact that life after PD no longer held the same promise, the dreams disappeared or at least differed dramatically. Running from that reality seemed easier than the alternative.

Endure. Coming from a stoic, work-oriented genetic pool, my reaction was often to dig deep and persevere. Related to ignoring, the difference is one of focusing in rather than fleeing.

Negotiate. With the diagnosis, with myself, with God. “Why me?” “What if I was wrongly diagnosed?” “What must I do to be cured?” “Surely,” I thought, “there must be a mistake or some way out of this.”

Defend. Defensiveness was my most prevalent reaction. “Don’t worry about me, I can beat this,” I would think to myself. “Do not pigeonhole me. I am not disabled. I am fine.”

Surrender. Giving up. Resigned to a reality of decline. Although I do react this way at times, I cannot stay there for long both. It is not who I am or want to be. It is the ultimate loss.

These are all reactions. Although they may be “natural”, they are emotional not thoughtful responses. These reactions are places I visit but cannot live for long.

Where I have to put down roots, how I must deal with the disease, is in the acceptance of the diagnosis. I have concluded that my PD is not purposeless pain or purposeful punishment. To succeed at acceptance I need to recognize that I cannot do it alone. I need friends (the clue found in the first letter of each of the 7 reaction words). Friends and family are the foundation for escaping a routine of reaction.