Jump to content


E-Newsletter Signup Like us on Facebook Sign Up For Our e-Newsletter
Photo

Living Large With Parkinson's disease


  • Please log in to reply
35 replies to this topic

#1 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,776 posts
  • LocationWashington, DC

Posted 22 February 2010 - 04:32 AM

Republished for late arrivals as it first appeared in The Washington Post several years ago.

Living Large With Parkinson's

By Daniel Stark

When I was diagnosed with Parkinson's disease, I had little knowledge of what lay ahead. Most people share that ignorance. Though the reactions of the few I told about my condition were typically intense, with exclamations of great pity or sorrow, this was often followed by a very honest "What exactly is Parkinson's?"

This proved harder to answer than you'd think. Doctors seemed reluctant to say much. I was told that everyone's experience was different. But it seemed a manageable disease, at least to me, at least then.

For six years after my diagnosis, I maintained my frenetic lifestyle, which mixed big-corporation lawyering with a typically busy family life.

Then came a rapid acceleration of symptoms. I was unprepared for the ferocity of the assault. For six years I had ingested an increasingly abundant cornucopia of pharmaceutical industry produce. But the length of time I got relief from a dose dropped from about four hours to less than 1 1/2 .

When drugs were not effective my speech became soft and stilted, and my back became the pain epicenter of my world, my muscles contracting into a big knot. The pain became intense if I stayed in bed more than an hour or two, making sleep something that other people did.
0.
0
In order to keep going and present a picture of health by day, I (please don't try this one at home) started taking more and more medication without my doctor's knowledge. This did not go well. I suffered periods of uncontrollable shaking. My hands grew numb.

Within two weeks, I slid from a place where my symptoms were largely under control to one where they were spinning out of it. I was sleep-deprived, in severe pain and shifting between flopping like a flounder and experiencing the utter immobility of a stump.

I soon realized where this whole thing was going. The progressive nature of Parkinson's meant that in another six months today's experiences might seem like the good old days. That was tough to imagine, and tough to accept.

Under the weight of all this, my will weakened. I picked out a particularly solid looking tree at the bottom of a long hill near my house that I knew I could drive into at a very high speed. That would be my out if things got too much to bear. I mention this not to stretch for melodrama or appeal for sympathy, but because it is true.

I hid behind a screen of e-mail banter with friends. Only my wife, Mary, was on the inside, and we were estranged.

I had no right to expect help from her. We had each retreated into our own fortresses some time ago, and she had been dealing with her own problems with little help from me. But on the day I hit bottom, she was there for me, looking much prettier than John Wayne but every bit as heroic. She put her arms around me, and, simply, told me that she loved me.

This time it was the disease that was caught off guard. It thought it had me down. But the love Mary provided gave me the stuff to fight back. Since then I have found new things that have helped. While not yet ready to declare victory, I am definitely unwilling to accept defeat.

Why am I sharing these very private experiences? After I was diagnosed, it seemed that people didn't want to tell me about what lay ahead for fear of depressing me. Yes, the facts about Parkinson's can be brutal. But remaining blissfully ignorant until your world collapses is not a useful response.

Following is my attempt to sketch a road map for those diagnosed with this lousy disease. Not the medical part, for which you will receive copious advice, some of it useful and some of it correct. But about how to think about your life.

Parkinson's disease is caused by the premature death of the brain cells that create a chemical called dopamine. Dopamine is an enabler that helps the brain transmit instructions to the muscles. Without it, actions that require muscular participation -- moving, eating and breathing, to name just three -- can get dicey.

To get an idea of Parkinson's effect on the body, imagine what happens when you try to use a motor that has run out of oil. Being an idiot with mechanical things long before I had Parkinson's, I did that once to a Sears lawnmower. Everything trembled, there were terrible noises and finally it just locked up, billowing smoke. It has occurred to me in moments of severe sleep deprivation that my disease is somehow linked, in spirit if not in cause, to my mistreatment of that mechanical companion.

Naming this disease after an English physician with a kind-sounding name does nothing to help people understand it. The name doesn't convey suffering; it sounds like you can't remember where you left the car at the mall.

Getting public support to fund research requires something that sounds more fearful. My proposal is "Spreading Muscle Death." It not only captures what is going on in a very melodramatic way, it carries a hint of contagion. Though Parkinson's of course does not spread from person to person, I am confident that a name that sounds like it might would produce a nice uptick in contributions.

People need to know you have Parkinson's before it really becomes apparent. This will prepare them for the difficult times ahead. It will also provide access to one of the (very few) benefits that come with this otherwise punishing disease: a license to enjoy life.

Anybody with a pulse deserves time to stop and smell the roses, of course. But life being the way it is, most people don't get it. The undiagnosed do not find it easy to slow down and make time for themselves. They're healthy and they are expected to act like it. So they rush from thing to thing, because that is how we try to balance the modern pulls of family, job, the search for happiness, etc.

But now you have an opening to pursue your birthright with impunity. Don't waste it.

Early Parkinson's symptoms are usually minor: A little stiffness, a few twitches, a vague psychic unrest that weakens inhibitions. In exchange for these relatively mild burdens, one gets immediate sympathy from those who think you're already immobile and choking on food. These things will happen in the future. For now, enjoy the best of both worlds: sympathy and kind treatment without the bodily degradation. But the benefits begin at disclosure. Nothing disclosed, nothing gained.

Look around you. Everyone you see is also dying, maybe slowly, maybe not. But because they don't realize this, they are willing to extend you kindness while expecting none themselves. Maybe it's some sort of karmic turn, but the first to know he is dying gets the best treatment. Accept it modestly, but accept it. There are roses that need smelling. The opportunity falls to you.

One key "but" here: Disclosing early is important, but that doesn't mean complaining all the time.

Yours is not the worst situation that one can imagine. There are many diseases that trump Parkinson's in their misery index, that are the "no feet" response to your "no shoes" situation. Childhood leukemia, inoperable brain cancer, quadriplegia, massive third-degree burns . . . the list is long.

So share the news and get on with it. No one likes to be around someone constantly bemoaning his or her fate. Don't worry; you'll get good treatment without needing to look like your dog died. It worked for me.

Of course, my dog did die. . . . Actually, both dogs. And a cat. And two bunnies, my mother, my mother-in-law and. . . . But all of that's another story.

See? You didn't want to hear about all that. Nobody does.

Wouldn't life be great if we were freed from all the little fears that constrain our behavior? Have you ever wanted to speak your mind at work but were held back for fear that it would damage your career? Now you can do so without fear of long-term consequences, because frankly, the long term just isn't among your problems right now.

The same is true socially. If you see a woman and are struck by her charm (assuming you are single), ask her out. Some will say no because of your condition, and some would have said no if your health were impeccable. But you know better than anyone that rejection will not kill you.

More important, the "you" that emerges once the myriad petty fears are stripped away will be so impressive that she might even say yes. In fact, this may be the "you" you should have been all along.

The buoyancy that results from dropping one's fears about what others think is absolutely startling. The knowledge that time is short, coupled with a willingness to take risks, unleashes an energy that makes even the need for sleep seem a pity.

So put this article aside. Go have the time of your life, to the extent your symptoms permit it. Proceed without fear. Pursue your passions and whims. You will know when it is time to resume reading this article. And who knows? By then we may have a cure for Spreading Muscle Death.

I hope you had a long and colorful interlude. I assume if you're reading this that we still do not have a cure, and you're starting to hurt. Let's look at what lies ahead.

At some point the symptoms start worsening. Your life becomes a function of the pills you take. The king is Sinamet, the giver of synthetic dopamine, which lets our muscles respond almost as if we were normal. It can provide relief for many years.

But, as you are now discovering, your own dopamine-producing cells are continuing to dive off a cliff. The result is that you need to take more Sinamet to keep the symptoms at bay.

Without the drug, you become almost immobile. Your body becomes wooden, you develop roots that hold you to the ground and squirrels begin to look at you with interest.

On the other hand, take too much medicine for too long and you begin experiencing those uncontrollable movements that make people with Parkinson's unwelcome at exhibits of artisan glass.

Threading the needle between stopped and flopped inevitably becomes trickier. Some doctors can do this much better than others and can buy you precious extra years. Don't feel bad about switching doctors. It's your life, not theirs.

The best guide to what lies ahead, alas, is the questionnaire routinely used to score the progression of the disease.

"Can you dress yourself?

"Do you drool excessively, only at night or during the day?

"Do your feet stick to the floor when you try to walk?

"Can you turn over in bed?

"Have you fallen, or experienced any hallucinations or dementia?

"Have you choked on your food?"

Call me slow on the uptake, but it eventually dawned on me that they asked these questions because someday I would experience most of these. In a way, it is a gentle way to reveal the unpleasant future.

In contrast to your experience in the first phase, you are now paying a serious price for any sympathy you earn. The rose-smelling can be very difficult and infrequent. But the disease still can be managed if you are careful.

The advice, then, is clear: Find a good doctor to minimize the symptoms and continue enjoying what you can. Don't worry about Phase 3; there will be time enough when it arrives.

What do you do when your symptoms become too severe for the ordinary arsenal of treatments to handle?

There are plenty of things to try: clinical trials with experimental drugs, brain surgery to implant pulsating electrodes, intensive exercise routines, etc. All have their adherents, and all can give some relief to some people. I am investigating them all. But none works well enough to protect you permanently from the continuing onslaught. So here are your instructions:

Keep your sense of humor and don't lose hope. Fight this thing as long as you can, and then fight it some more. Maintaining hope as the disease advances will become hard to do. It is no fun being a stump. Or a fish.

During those times when the drugs have not worked well, I've experienced what it feels like to be on the inside of a body that the brain cannot move. It is not blinding agony, but it is a persistent mental and physical ache I cannot imagine living with for a long time. But would you want to give up if the cure were only days or weeks away?

How long will it take before a cure is available? To help understand the answer, I have drawn on my corporate background and constructed a project management timeline. (Project management timelines, I learned, do little to make success more likely, but they do make failure easier to explain.)

By assigning reasonable time periods to raise funds, identify promising areas of medical research, engage in protracted fights with opponents of stem cell research, perform the research, negotiate with drug companies, negotiate with the FDA, perform clinical trials, again and again, and then file papers seeking approval, and wait, I have determined that a cure could be made available in -- bear with me here while I do the calculations . . . 46 years.

Wait, I almost forgot: George W. was reelected. He finds it politically expedient to accommodate the noisy, increasingly theocratic right wing of his party by blocking critical research that would use stem cells. (See, now that I'm sick I'm saying all the things I used to hold back. I am livin' large!) Add four years to account for his second term and the lingering damage he is likely to do, and you have an even 50 years.

Fifty years is too long for most of us to wait. I'll be dead of old age by then anyway. Hopefully, we will have future presidents that have bigger brains (sorry, I can't stop myself) than the incumbent.

But then, other countries are not constraining their stem cell research. Japanese companies are in the game, adding their technical prowess to the hunt. That ought to save a decade, easy. Great Britain's in on the chase, too; knock off another five years.

And money is time; with more funding, we can shave more years from the tally. Who knows how much sooner we can make it happen?

(Recall that contributions to your favorite Parkinson's foundation are tax-deductible in this life, and may improve your accommodations in the next.)

Eventually we will beat this, or our successors will. Those with the disease can then rejoin the mainstream and die of something else, ideally much later. Death may be our common destination, but there are different roads one can take there.

There's a road I know of that would allow me enough time so that I would be able to walk a bit further with my kids, discussing writing with my son and watching my little girl, her eyes dancing with mischief, as she picks dandelions and dodges my efforts to prevent her blowing their feathery seeds on our lawn. It's the first turn on the left, just past a cure for Parkinson's. I'd like to take it.

But first, I have a task to tend to. I am finishing watching the sun rise in St. Thomas (yes, the St. Thomas in the U.S. Virgin Islands). It looks like another beautiful day, so it may be difficult to squeeze in even a modest dose of self-pity before brunch. In fact, I may not even try. If it rains tomorrow I can try to make it up. ·

Daniel Stark is a New Jersey writer. He previously wrote "Silence of the Bunnies" for the Health section.

#2 Stargazer

Stargazer

    Advanced Member

  • Disabled Members
  • PipPipPip
  • 438 posts
  • LocationEastern Washington

Posted 22 February 2010 - 10:15 AM

Thank you Roger for posting the article again it is ever so true but it is rather blunt may be hard for some to take. We do need to know all the stages and appreciate what you have endured and am sure we can go on.

I find people such as you Roger , (the kind Roger that is) Silver Fox Bless his heart but we know he has won the race already in spite of what he says, Peter Mid, The 2 Johns, then there is Jack where ever he is we pray he is happy. Yes Roger, we can be happy in our own little way. You all have shown much and done to help the rest of us understand the disease and how in spite of it we can and do go on with life.

Have you made a trip back to your beloved Mt. yet or is that coming in the future. WE all have our beloved spots that bring calm , peace and enjoyment and I wish the best to you.

Deeann

#3 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,776 posts
  • LocationWashington, DC

Posted 22 February 2010 - 11:01 AM

My restorative trek to Black Dome Mountain in the Catskills is in the works for after Spring thaw. I'll be travelling by cart pulled by an ATV. Hope all is going as well as it possibly can for you.

Roger

#4 Stargazer

Stargazer

    Advanced Member

  • Disabled Members
  • PipPipPip
  • 438 posts
  • LocationEastern Washington

Posted 22 February 2010 - 10:26 PM

Roger I am doing as well as I can, have started walking outside using two ski poles for balance. Suppose I am rather a strange sight but that is ok. I need to walk more to keep my strength up and my balance. I am into PD but 5 years do not want to wind up in a wheel chair before my time.

I do get tired at the end of the day but I am pretty much busy all day. I notice more problems with my throat, I seem to choke slightly more often but I also have a cough that feels like it will strangle me. I must see the Dr. I am not one to go easily usually postpone it as long as I can.

We are enjoying the Olympics I enjoy it all except for the Hockey. I hope you are enjoying them also. I had info on the Black Dome Mt. up today what trail will you be taking? Please keep us posted.

Take care,
Deeann

#5 Bill46

Bill46

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 22 February 2010 - 10:28 PM

Roger--

Thanks for the post. It has given me much to think about. As a big firm litigator with a busy family life, I very much identify. I was diagnosed in May of 09 and am still coming to grips with it. Things are pretty normal now as the drugs work their magic and I continue to live my frentic lifestyle. Few know of my condition. How I will spend the limited number of relatively "normal" years ahead? Much to think about. . . .

Bill

#6 kynlyn

kynlyn

    Advanced Member

  • Members
  • PipPipPip
  • 41 posts

Posted 24 February 2010 - 05:03 PM

I have a copy of this bookmarked on my computer and periodically go back and read it. For some reason, although it is rather blunt, it does make me feel better when I am feeling particularly miserable and throwing myself a little pity party.

Bill-
What kind of litigation? I used to be an attorney, took time off to be a mom, and occasionally think about going back, but the prospect seems rather daunting when I take into consideration the number of years it has been since I have practiced, the fact that my kids are still on the young side and need me around, and then throw in some Parkinson's on top of that.

#7 Bill46

Bill46

    Newbie

  • Members
  • Pip
  • 6 posts

Posted 24 February 2010 - 09:41 PM

kynlyn:

I typically defend corporations in consumer class actions. I also represent manufacturers in disputes with dealers and distributors. More than you want of know, I am sure.

How old are your kids? How long have you been inactive? What did you concentrate in when your were practicing?

PD and kids and getting back up to speed seems pretty daunting. The only way I manage to do what I do is that I have a fantastic wife that keeps the ship afloat and has my back. Hopefully, you have a similar support system.

As for being rusty, maybe you can find a part time position that lets you transition back and still have the needed family time. You probably know from your prior experience that the law is a jealous mistress-- so is PD for that matter.

Good luck whatever you decide to do.

Bill

#8 kynlyn

kynlyn

    Advanced Member

  • Members
  • PipPipPip
  • 41 posts

Posted 24 February 2010 - 10:08 PM

To begin with I did similar work as you - mostly asbestos defense work. Then worked for NYS Atty Gen Office - drafting opinions for state agencies/governor's office. Been out of practice almost 10 years though. I have 2 children (5 and 10 1/2). Been poking around for something interesting and part-time, but this is definitely not the economy for that.

#9 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,776 posts
  • LocationWashington, DC

Posted 24 February 2010 - 10:49 PM

Kynlyn-


Consider doing some pro bono work. I did appellate work for a few indigent defendants post diagnosis. Most state court systems are begging for dedicated attorneys to write appeals. If your bar association is anything like mine the welcome mat is always out in wide ranging areas. And 'up to speed' skilled lawyers are ready to assist you. The Elderlaw web site mentioned herein allows lawyers to unofficially counsel visitors who seek answers to the full panoply of concerns confronting that constituency. (i.e. wills, estates, probate, trusts, medicare and medicaid, etc.). They pose their questions and you type them answers right there on the blog.


I determined immediately upon being diagnosed that ir was incumbent on me to make a record of my infirmity. One might or might not feel the necessity to disclose to a prospective employer or choose not to have an employer but judges and clients in a courtroom context present different client risks and therefore obligations.


One thing that has changed lawyering radically is, of course the computer. It has simplified it, particlarly for folks like us. Today law books and libraries are obsolete as are filing procedures in many jurisdictions. Forms are available by pressing a button.


Practicing to earn money out of necessity is just that and therefore required. Practicing for fun? ...aren't their other activities more enjoyable than lawyering. Returning to practice to help others is noble.


best,


Roger

Edited by Rogerstar1, 17 February 2012 - 05:40 PM.


#10 1Mike

1Mike

    Member

  • Members
  • PipPip
  • 14 posts

Posted 26 February 2010 - 05:59 PM

Thank you Roger.
1Mike

#11 wheelersce

wheelersce

    Advanced Member

  • Members
  • PipPipPip
  • 906 posts
  • LocationMI

Posted 27 February 2010 - 06:52 AM

Hi, Everybody,
I just returned from the alternative-universe of Jury Duty. Very interesting. Glad someone else is doing the lawyering, not me! I'm approaching my 4th anniversary of diagnosis. All of a sudden more symptoms breaking through in spite of meds. I thought my right arm pain was because of too much computer, but even after several days off it's there. Oh well, I'm not complaining. Best, Sue W.

#12 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,776 posts
  • LocationWashington, DC

Posted 28 February 2010 - 12:24 AM

Hi DeeAnn - Rather than track down the thread where we were enjoying our little religious conversation awhile back I'll simply stick this column by Nicholas Kristof in right here. Maybe you will read it before you head off for this morning's sermon. I found it interesting and conciliatory.

Roger


February 28, 2010
Op-Ed Columnist
Learning From the Sin of Sodom
By NICHOLAS D. KRISTOF
For most of the last century, save-the-worlders were primarily Democrats and liberals. In contrast, many Republicans and religious conservatives denounced government aid programs, with Senator Jesse Helms calling them “money down a rat hole.”

Over the last decade, however, that divide has dissolved, in ways that many Americans haven’t noticed or appreciated. Evangelicals have become the new internationalists, pushing successfully for new American programs against AIDS and malaria, and doing superb work on issues from human trafficking in India to mass rape in Congo.

A pop quiz: What’s the largest U.S.-based international relief and development organization?

It’s not Save the Children, and it’s not CARE — both terrific secular organizations. Rather, it’s World Vision, a Seattle-based Christian organization (with strong evangelical roots) whose budget has roughly tripled over the last decade.

World Vision now has 40,000 staff members in nearly 100 countries. That’s more staff members than CARE, Save the Children and the worldwide operations of the United States Agency for International Development — combined.

A growing number of conservative Christians are explicitly and self-critically acknowledging that to be “pro-life” must mean more than opposing abortion. The head of World Vision in the United States, Richard Stearns, begins his fascinating book, “The Hole in Our Gospel,” with an account of a visit a decade ago to Uganda, where he met a 13-year-old AIDS orphan who was raising his younger brothers by himself.

“What sickened me most was this question: where was the Church?” he writes. “Where were the followers of Jesus Christ in the midst of perhaps the greatest humanitarian crisis of our time? Surely the Church should have been caring for these ‘orphans and widows in their distress.’ (James 1:27). Shouldn’t the pulpits across America have flamed with exhortations to rush to the front lines of compassion?

“How have we missed it so tragically, when even rock stars and Hollywood actors seem to understand?”

Mr. Stearns argues that evangelicals were often so focused on sexual morality and a personal relationship with God that they ignored the needy. He writes laceratingly about “a Church that had the wealth to build great sanctuaries but lacked the will to build schools, hospitals, and clinics.”

In one striking passage, Mr. Stearns quotes the prophet Ezekiel as saying that the great sin of the people of Sodom wasn’t so much that they were promiscuous or gay as that they were “arrogant, overfed and unconcerned; they did not help the poor and needy.” (Ezekiel 16:49.)

Hmm. Imagine if sodomy laws could be used to punish the stingy, unconcerned rich!

The American view of evangelicals is still shaped by preening television blowhards and hypocrites who seem obsessed with gays and fetuses. One study cited in the book found that even among churchgoers ages 16 to 29, the descriptions most associated with Christianity were “antihomosexual,” “judgmental,” “too involved in politics,” and “hypocritical.”

Some conservative Christians reinforced the worst view of themselves by inspiring Ugandan homophobes who backed a bill that would punish gays with life imprisonment or execution. Ditto for the Vatican, whose hostility to condoms contributes to the AIDS epidemic. But there’s more to the picture: I’ve also seen many Catholic nuns and priests heroically caring for AIDS patients — even quietly handing out condoms.

One of the most inspiring figures I’ve met while covering Congo’s brutal civil war is a determined Polish nun in the terrifying hinterland, feeding orphans, standing up to drunken soldiers and comforting survivors — all in a war zone. I came back and decided: I want to grow up and become a Polish nun.

Some Americans assume that religious groups offer aid to entice converts. That’s incorrect. Today, groups like World Vision ban the use of aid to lure anyone into a religious conversation.

Some liberals are pushing to end the longtime practice (it’s a myth that this started with President George W. Bush) of channeling American aid through faith-based organizations. That change would be a catastrophe. In Haiti, more than half of food distributions go through religious groups like World Vision that have indispensible networks on the ground. We mustn’t make Haitians the casualties in our cultural wars.

A root problem is a liberal snobbishness toward faith-based organizations. Those doing the sneering typically give away far less money than evangelicals. They’re also less likely to spend vacations volunteering at, say, a school or a clinic in Rwanda.

If secular liberals can give up some of their snootiness, and if evangelicals can retire some of their sanctimony, then we all might succeed together in making greater progress against common enemies of humanity, like illiteracy, human trafficking and maternal mortality.

#13 ghostgirl

ghostgirl

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts

Posted 28 February 2010 - 07:55 AM

thanks for the post Roger! very thought provoking! reading it took me deeper into thinking about paradox -is anything as it appears? ..sigh

i would comment that even the act of charity can be a source of a prideful identification though-is that just the "liberal" in me speaking now??hmmmm seems to me that as your article suggests of necessity we are being asked to soften the boundaries between those political categories lest we remain in gridlock

equality gives strength in all things ..if i'm out in the desert let me be accompanied by an animal....

kind regards to you Roger,
sharilyn

#14 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,776 posts
  • LocationWashington, DC

Posted 28 February 2010 - 02:16 PM

SueW- Nice to see you on here. This poignant item was in today's NY Times also and was a pleasure to read. In high school I played percussion...base drum and cymbals mostly :-)....but benefitted from a devotion and method like the music teacher in the article. Enjoy....I'm curious what you think of it. I became a little emotional upon reading it. Roger

February 28, 2010
Op-Ed Contributor
And the Orchestra Played On
By JOANNE LIPMAN
The other day, I found myself rummaging through a closet, searching for my old viola. This wasn’t how I’d planned to spend the afternoon. I hadn’t given a thought to the instrument in years. I barely remembered where it was, much less how to play it. But I had just gotten word that my childhood music teacher, Jerry Kupchynsky — “Mr. K.” to his students — had died.

In East Brunswick, N.J., where I grew up, nobody was feared more than Mr. K. He ran the town’s music department with a ferocity never before seen in our quiet corner of suburbia. In his impenetrably thick Ukrainian accent, he would berate us for being out of tune, our elbows in the wrong position, our counting out of sync.

“Cellos sound like hippopotamus rising from bottom of river,” he would yell during orchestra rehearsals. Wayward violinists played “like mahnyiak,” while hapless gum chewers “look like cow chewing cud.” He would rehearse us until our fingers were callused, then interrupt us with “Stop that cheekin plocking!”

Mr. K. pushed us harder than our parents, harder than our other teachers, and through sheer force of will made us better than we had any right to be. He scared the daylight out of us.

I doubt any of us realized how much we loved him for it.

Which is why, decades later, I was frantically searching for an instrument whose case still bore the address of my college dorm. After almost a half-century of teaching, at the age of 81, Mr. K. had died of Parkinson’s disease. And across the generations, through Facebook and e-mail messages and Web sites, came the call: it was time for one last concert for Mr. K. — performed by us, his old students and friends.

Now, I used to be a serious student. I played for years in a string quartet with Mr. K.’s violin-prodigy daughters, Melanie and Stephanie. One of my first stories as a Wall Street Journal reporter was a first-person account of being a street musician.

But I had given it up 20 years ago. Work and motherhood intervened; with two children and long hours as an editor, there wasn’t time for music any more. It seemed kind of frivolous. Besides, I wasn’t even sure I would know how.

The hinges creaked when I opened the decrepit case. I was greeted by a cascade of loose horsehair — my bow a victim of mites, the repairman later explained. It was pure agony to twist my fingers into position. But to my astonishment and that of my teenage children — who had never heard me play — I could still manage a sound.

It turned out, a few days later, that there were 100 people just like me. When I showed up at a local school for rehearsal, there they were: five decades worth of former students. There were doctors and accountants, engineers and college professors. There were people who hadn’t played in decades, sitting alongside professionals like Mr. K.’s daughter Melanie, now a violinist with the Chicago Symphony Orchestra. There were generations of music teachers.

They flew in from California and Oregon, from Virginia and Boston. They came with siblings and children; our old quartet’s cellist, Miriam, took her seat with 13 other family members.

They came because Mr. K. understood better than anyone the bond music creates among people who play it together. Behind his bluster — and behind his wicked sense of humor and taste for Black Russians — that was his lesson all along.

He certainly learned it the hard way. As a teenager during World War II, he endured two years in a German internment camp. His wife died after a long battle with multiple sclerosis. All those years while we whined that he was riding us too hard, he was raising his daughters and caring for his sick wife on his own. Then his younger daughter Stephanie, a violin teacher, was murdered. After she vanished in 1991, he spent seven years searching for her, never giving up hope until the day her remains were found.

Yet the legacy he had left behind was pure joy. You could see it in the faces of the audience when the curtain rose for the performance that afternoon. You could hear it as his older daughter Melanie, her husband and their violinist children performed as a family. You could feel it when the full orchestra, led by one of Mr. K.’s protégés, poured itself into Tchaikovsky and Bach. It powered us through the lost years, the lack of rehearsal time — less than two hours — and the stray notes from us rustier alums.

Afterward, Melanie took the stage to describe the proud father who waved like a maniac from a balcony in Carnegie Hall the first time she played there. At the end of his life, when he was too ill to talk, she would bring her violin to his bedside and play for hours, letting the melodies speak for them both. The bonds of music were as strong as ever.

In a way, this was Mr. K.’s most enduring lesson — and one he had been teaching us since we were children. Back when we were in high school, Mr. K. had arranged for Melanie and our quartet to play at the funeral of a classmate killed in a horrific car crash. The boy had doted on his little sister, a violinist. We were a reminder of how much he loved to listen to her play.

As the far-flung orchestra members arrived for Mr. K.’s final concert, suddenly we saw her, that little girl, now grown, a professional musician herself. She had never stopped thinking about her brother’s funeral, she told me, and when she heard about this concert, she flew from Denver in the hope that she might find the musicians who played in his honor. For 30 years, she had just wanted the chance to say, “Thank you.”

As did we all.

Joanne Lipman, a former deputy managing editor at The Wall Street Journal, was the founding editor in chief of Condé Nast Portfolio magazine.

#15 ghostgirl

ghostgirl

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts

Posted 28 February 2010 - 06:56 PM

SueW,

really sorry to hear about the arm pain- i'm coming off 2 years of it myself... my massage therapist has observed that symptom to occur paarticularly in mid aged women and to be a passing thing. keep us posted - massage helps me on that front. one of the side effects of progesterone is arm pain -in my homeopathy training i learned that a deficiency of an element can also express same symptoms as an excess of same.
sharilyn

#16 Stargazer

Stargazer

    Advanced Member

  • Disabled Members
  • PipPipPip
  • 438 posts
  • LocationEastern Washington

Posted 02 March 2010 - 05:19 PM

Hello Roger!!!!!

I read the article you posted by Nicholas D. Kristof, interesting to read what people think and surmise what makes a christian a "Christian". Each one to his own thoughts and beliefs though I often wonder what makes them think and feel as they do it is not worth my time at this stage of the game to spend a great deal of time on it.

I do know what God expects from each and every believer and non believers. He loves us all, Quote : John 3 verse 16 For God so loved the world, that He gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life. John 3 verse16.

Thanks Roger for the article your postings are always read & appreciated. The very Best to You.
Deeann

#17 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,776 posts
  • LocationWashington, DC

Posted 04 March 2010 - 01:46 PM

Hi DeeAnn- I admire the discipline your faithfulness exacts from you. And envy you the benefits I gather you find it renders, or will in time render.
Pain and compassion are daily visitors to PWP or will be as our illness advances. What ever works to reduce the former and produce more of the later I support. Susan Jacoby's column in the Washington Post last week offers for me, at the very least an interesting perspective. If not less pain at least a credible framework to consider it from. Best regards to you from Rogerstar.

Ms. Jacoby writes:

Atheism and the myth of redemptive suffering


There are a great many real questions about the ethics of atheism. Foremost among them is, "If you don't believe in God or an afterlife, what is the meaning of suffering in this life?" I will always be pleased to answer that question, and my answer is that suffering has absolutely no positive meaning in an ethical sense. Since suffering, in nature and civilization, is an inevitable part of life, the manifold ways in which we respond certainly do have personal meaning for each of us and for those whose lives we touch. If a child has been brutalized by a parent and grows up to become a good parent, that is a moral triumph for the child--but it does not endow the original suffering with positive meaning or with any meaning. Good may emerge from evil, but evil and suffering are more likely to breed more evil and suffering.
The theodicy problem is the rock upon which all monotheism founders. How can the existence of an omnipotent, loving God be reconciled with the horrors he allows to be inflicted on his creations? Since there can be no material justification for the wounds and deaths inflicted by the lash, the crematorium, or impersonal forces such as earthquakes, the only possible answer for the monotheist is that suffering is necessary to build character--that we would all be worse human beings if we never had to worry about being whipped, herded into concentration camps, or swallowed by a fissure in the earth's crust. Christianity, of course, is based on the concept of redemptive suffering exemplified by the death of Jesus on the cross. For if suffering has no meaning, God is either a monster or a myth. To this, the atheist replies that God is indeed a myth. To the redemptive rationale for suffering, the atheist says no.
The distribution of suffering, like the distribution of good fortune, is unequal--and members of our species confront both in a wide variety of admirable and despicable ways. One man may inherit a million dollars and blow the money on gambling and drugs, while another may use his legacy to enrich not only his own life but the lives of others. The inheritance itself has no moral meaning. Nor does the cruelty or mercy of nature. Human-authored suffering has a moral meaning--an entirely negative one--attached to those who inflict it, but not to those who must bear it.
When I was a cub reporter for The Washington Post in 1965, I was, like all cub reporters in those days, assigned to night duty on the obituary desk. The theologian Paul Tillich died just a half hour before the paper's first edition closed at 10 p.m., so it was his indifferent fate (definitely not an act of God) to have his life summed up by a 20-year-old on deadline. I used a quote from his 1952 book, The Courage To Be, in which Tillich cites courage as the ultimate in Christian meaning--"Not the courage of the soldier, but the courage of the man who feels all the riddles and all the meaninglessness of life and is nevertheless able to say 'yes' to life." It occurred to me at the time that this was an even better definition of an atheist's ethical approach, and that is one reason why Tillich has often been called a Christian existentialist philosopher.
Atheists have only their own, ongoing concept of decent behavior to get them through the hard times: Suffering need have no cosmic meaning for a decent person to know that the only proper moral response is to try to ease the pain. We have no promise of an afterlife in which all tears will be wiped from our eyes, no hope that when our consciousness ceases, we will be resurrected as beings who will never suffer again. Our only ethical injunction is to cause as little suffering as possible and to try to alleviate it when and where we find it. That is a huge task in itself.
I am not suggesting that atheists are ethically superior to religious believers because our way through suffering is not eased by the hope that it all has a meaning, which will be revealed to us in the sweet by and by. Indeed, I think that facing up to the suffering that is a part of nature itself may be easier for an atheist because we do not have to reconcile the inconsistency between the evil before our eyes and faith in a loving god. A few years ago, I had dinner with a woman who had just attended a lecture of mine in Cambridge, Massachusetts. When her 12-year-old son died of leukemia, she joined a support group for parents who had lost their children to disease or violence, but she soon left because she was an atheist and so many of the other participants kept saying, "God must have a reason." Of course he must. Otherwise, why had their children died of cancer or been mowed down by a drunk driver? "For me," this grieving mother said, "the task was to reconcile myself to something for which there was no reason other than cells gone wild. I don't know how I could bear it if I thought that my son's death was part of a plan, because I would have to hate any god with such a 'plan'--and if I were consumed by hate, then I would know despair."
I recalled those words vividly a year later when my partner was stricken with Alzheimer's disease. What could be more meaningless than a neural catastrophe defined by the inexorable daily loss of all the competence and awareness and knowledge that you have acquired over a lifetime?

In reviewing the professional literature about dementia for a new book I am writing, I found a secular version of religious attempts to find a meaning in suffering in the writings of British psychologist Thomas M. Kitwood. In Kitwood's view, dementia is not an unmitigated disaster because the rest of us can all learn something from those who are losing their minds. In Dementia Reconsidered: The Person Comes First, Kitwood writes of the demented, "Reason is taken off the pedestal that is has occupied so unjustifiably; and for so long; we reclaim our nature as sentient social beings. Thus from what might have seemed the most unlikely quarter, there may emerge a well-spring of energy and compassion." In other words, my late partner's Alzheimer's had value because it could teach him, me, and his relatives more about compassion and lure us away from that idol, reason. This is just another version of the Christian premise that not only our own suffering but the suffering of others has value because it makes us better people. Moreover, the notion that reason is opposed to compassion is neither compassionate nor reasonable, whether expressed in religious or secular ideology. I know what my beloved would say if he were alive today, "Thank you, but I'll keep my working brain and you can find your inner caretaker in some other way."
I genuinely do not understand how anyone can fail to be repelled by the idea that the natural horror of a disease like Alzheimer's, or any other horror, is mitigated by the fact that it can (sometimes, but by no means always) elicit noble demonstrations of caring from others. If I believed that, I would truly know despair.

#18 wheelersce

wheelersce

    Advanced Member

  • Members
  • PipPipPip
  • 906 posts
  • LocationMI

Posted 04 March 2010 - 06:35 PM

[quote name="Rogerstar1"]SueW- Nice to see you on here. This poignant item was in today's NY Times also and was a pleasure to read. In high school I played percussion...base drum and cymbals mostly :-)....but benefitted from a devotion and method like the music teacher in the article. Enjoy....I'm curious what you think of it. I became a little emotional upon reading it. Roger]

Hey, Roger,
This is great! Thanks so much for sharing. I don't play my cello anymore, too much work and not enough reward. But my music (and poignancy) appreciation is robust as can be! Still, Sue W.

#19 Rogerstar1

Rogerstar1

    Advanced Member

  • Members
  • PipPipPip
  • 1,776 posts
  • LocationWashington, DC

Posted 04 March 2010 - 06:53 PM

My spellling doesn't seem to be improving either...it was the BASS DRUM I played in my high school band. R.

#20 wheelersce

wheelersce

    Advanced Member

  • Members
  • PipPipPip
  • 906 posts
  • LocationMI

Posted 05 March 2010 - 06:30 AM

SueW,

really sorry to hear about the arm pain- i'm coming off 2 years of it myself... my massage therapist has observed that symptom to occur paarticularly in mid aged women and to be a passing thing. keep us posted - massage helps me on that front. one of the side effects of progesterone is arm pain -in my homeopathy training i learned that a deficiency of an element can also express same symptoms as an excess of same.
sharilyn


ghostgirl/Sharilyn,
Thanks. I'm sure my indiscretion at the computer table contributes, though being computer-free for a week didn't help. But I have had a wonderful massage therapist that is willing to come to my house. It may be about time to give her a call. Sue W.




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users