I reread this seminal document on coping with young-onset PD in preparation for a brief talk which I have the opportunity of giving in the near future. Whenever I reach back to the “beginning” of my journey with PD, the first word that comes to mind is Grace, from this essay that was posted 13 years ago on BrainTalk (one of the predecessors of NeuroTalk). Some of you may remember it, and I have copied the first few responses because they happened to be attached to my copy of the post. Some of the names you still see on the forum, including mine now and then.

Michael J Fox, in a 2000 interview with Diane Sawyer, said this in response to watching a clip of himself acting: “See, this is really early on. No one ever noticed that, but that's me working my hands. Keeping my hands busy. A friend of mine wrote a story called ‘Grace.’ You get used to the idea of not having physical grace. So you -- and especially for me, I'm so dependent on my physical grace and my agility and my -- that you get -- you really are well served to notice grace in others and to develop an inner grace.”

Michael seems to have cultivated inner grace as well as making the most of his physical grace. For me, the concept is as critical as ever, only I have to reach far more deeply inside myself to access it than I had to 13 years ago. I have to push aside—no, scrub away, cleanse—all the progressive difficulties, disappointments, and darkness I have experienced in those years.

Rereading this essay—and the few responses—has helped. I hope you find it enlightening (bringing light) as I do. Because we must—if we can—keep going as strong and graceful—as we can—for each other if not for ourselves.


GRACE

Greg
Member

Posts: 68
From: California
Registered: Jan 2000
posted January 08, 2000 08:13 PM

I had a dream last night in which President George "Dubya" accidentally broke the beautiful watch I was given by my parents when I graduated from law school (I still have it these many years later). At first he tried to fob off a cheap replacement on me, but I threw it in the waste basket in front of his eyes in the Oval Office. Months later, when I had forgotten about it, his secretary asked me the date the I had graduated from law school, and realized it was the anniversary of that date. When I remarked on that, she handed me a wrapped box which contained a replacement of the watch he had broken. Fade to black.

Now what this has to do with Grace I am not sure, although I have my suspicions, but I immediately got up and looked up the word "grace" in the dictionary. Grace has, of course, several definitions: (1) seemingly effortless beauty or charm of movement, form, or proportion; (2) a pleasing characteristic or quality; (3) skill at avoiding the inept or clumsy course; (4) good will; mercy; clemency; (5) Divine love bestowed freely upon mankind.

I generally use a cane if I am going to walk any sizable distance, and so I run into all those situations in which people try to make your life a little easier - they make way; they offer to reach something for you; they try to make sure you have what you want so you don’t have get up; if you are having trouble cutting your food from tremor or weakness, they may offer to cut your food for you.

Some of these acts or offers of generosity are gratefully accepted, others are unneeded, and some can be embarrassing or even humiliating. But assuming they are sincere attempts (as most are) to help for the sake of helping another in need, then it seems to me that they all involve a the question of "grace," in its several senses. And I am beginning to think that grace is a word that holds a key to dealing successfully with Parkinson’s.

Parkinson’s disease in it’s outward manifestations has everything to do with the loss of grace. As our disease progresses, seemingly effortless physical beauty or charm of movement, form, or proportion, as well as many of our most pleasing physical characteristics and qualities, are lost. Skill at avoiding the inept or clumsy course becomes dulled and ultimately is almost completely lost. In this sense, Parkinson’s in it’s most reductive form is all about the loss of grace in the world. And to lose this grace, smooth and accurate movement in relation to the world around us, is a devastating loss. The ability to walk smoothly, to swim or run, to use utensils effectively, to speak easily, are all measures that so many of us use to place ourselves, to define ourselves, in the world. What teenager has not spent countless hours wishing they looked different, were better at a sport, had the charm and ease that contribute to a sense of being part of the larger normal world and all it’s rhythms and swirling currents, and of bending every effort to avoid being an outsider. And what man or woman had not carried in some form these same measures of who we are along with us into adulthood and even old age?

To slowly lose this physical grace, the ability to move smoothly and accurately, is a catastrophic disability for most persons. Everything you learned to do accurately and smoothly as a child may be lost and cannot be relearned.

But grace also means good will, mercy, clemency, and divine love bestowed freely. And here is where people with Parkinson’s can not only find a key that unlocks their cages and helps set them free in the world, but also gives them a special opportunity to bestow that grace upon others by way of example. In the course of a life lived "normally," these are often not high priorities. We are too busy getting to the next goal or obligation or pleasure.

But I think the loss of physical grace gives us an opportunity to more completely acquire this second, and to my mind more important, spiritual grace. With it, we can accept the loss of physical grace, making our own adaptation to our disease easier to bear. We can also impart to others through our own acts and attitude toward our loss a sense of who we now are in the world, and a different sense of the world itself and what is important to know and what is not important.

The struggle to find this kind of grace is not easy, I know. But if we can achieve this ability to live our lives in the light that shines from within, then merely by being in the world we demonstrate to others that the most important attainments in life are concerned with the "spiritual" (however each of us defines that word) aspects of grace. By struggling successfully to learn the difference, and the profound importance of the difference, between the grace that comes from without and that which comes from within, we can embody the concept of good will, the meaning of mercy, and even grant a kind of clemency to others, because we can then give to others the example of how life can be lived fully under even the most difficult of circumstances.

When we have unlearned the lessons that the world tries so hard to teach us, that to live fully and in harmony with ourselves and others we must be attractive, move with charm, be financially well-off, in other words to be good consumers of modern culture with all it’s meretricious charm, and instead look within ourselves, without reference to those outer and misleading forces, to our hearts to find the definition of who we are, then our very existence becomes an example of true grace.

When we have found that inner grace of being in the world, we can also accept the assistance of others with both humility and dignity. We need not bristle that "we can do it ourselves," thereby embarrassing a well-meaning person whom we should not reasonably expect to intuit our real needs. Nor will we be as likely to act with embarrassment or humiliation when we cannot do certain things for ourselves, because we will have know that not being physically able does not reduce or even substantially affect our sense of who we are. We also, I think, will diminish that terrible sense of otherness and being "out of step" in the world. The sense of ourselves as being "normal" no longer depends on a definition of ourselves with reference to the outside world of physical grace.

I think if we can come to a real understanding that grace and our humanity abides not on the surface, not in the ability to put a spoon in one’s mouth or swing a bat or walk unassisted, but rather in making our souls the touchstone of our experience of ourselves and others, then we will be able to live with our Parkinson’s with some sense of inner peace and calm. We will also be able to feel true goodwill to those around us, to have mercy and act with tenderness towards others, and to forgive the failures of others and of ourselves to sometimes deal easily with what it is to have become people with Parkinson’s.

Some, perhaps many, on this forum have treveled that road already. You can read it i their posts, you can sense it in their compassion, it is evident in the harmoniuous and centered tone of their words. It is not something I am close to achieving at this point myself. But I am beginning to see a path, I think, and I believe that by keeping this notion of grace and its
meanings firmly in mind, I may someday get there myself.

See you at the dance,
Greg

P.S.
If this article seems out of character or incomprehensible, please put the blame on George "Dubya" and that darned dream.


------------------
Greg

Toadie
Member

Posts: 112
From: New York
Registered: Dec 1999
posted January 08, 2000 08:28 PM

Thanks Greg,
I think I hear a bell ringing.
(It's A Wonderful Life)
cs
Member

Posts: 76
From: wallingford,CT,
USA
Registered: Jan 2000
posted January 08, 2000 09:34 PM

Right on the mark brother! I feel that you have captured the essence of what PD gives us, despite what it takes away from us. If every human on earth could act with kindness and grace toward each other, then we might just have a wonderfull future as a species, and every person would feel accepted and loved by others that they may never even meet. I would give up the cure if such an idea could be translated into reality. I really mean that.


RobertJA
Junior Member

Posts: 15
From: Victoria BC
Canada
Registered: Dec 1999
posted January 09, 2000 02:03 AM

Thanks for this great article Greg. Recently, and for the first time ever, I had to ask for help with a task that hitherto I had taken for granted; I felt rather diminished and demeaned having to do so. Christmas dinner was buffet style with dishes of food piled close together on a kitchen island. My right hand tremor (which has gotten quite a bit worse in the last few months) has made it difficult if not impossible to hold a plate in one hand and spoon out the food with the other. Either I held the plate steady in my left hand and spoon food all over the walls, or, I heap it onto a moving target! I was embarassed didn't want everyone to see my difficulties and so asked a close relative to discreetly fill a plate for me. I have never had to do anything like that before and it hurt more than just a little bit. Your grace article has helped me to deal with the feelings of loss and humiliation I felt at that dinner and has put it all into perspective, thanks Greg! :-)


10.07
Member

Posts: 88
From: Texas
Registered: Dec 1999
posted January 09, 2000 03:06 AM

Greg & Robert: You both put me to shame! I am an ornery independent sort and I have so much to be grateful for. My symptoms are not too bad, and I can still work. But people try to help and I hate it. I promise myself to be more gracious (sp??), and take a leaf out of your respective books. Eating humble pie albeit American, 10.07


TxRhonda
Member

Posts: 62
From: Montgomery,
Texas DX 1996 at age
45, See "profile" for
current meds
Registered: Jan 2000
posted January 09, 2000 03:22 AM

Greg, once again your words have brought a "voice" to many feelings. They have also brought tears. The ease and grace of movement has always been so easy. And yes, to lose it has been devastating. Where once I would turn heads when I would glide into a room, now I get everyone's attention when I upset the dessert cart or some other equally loud obstacle. Or when I get up from my seat and stumble my way out of the room ("Did you see that woman, it is awfully early to be drinking.) Or when I make a phone call and all of a sudden, the words don't come out or come out all jumbled up making me sound like a complete idiot. Or, when I am at a social event and think I have a pleasant look on my face and someone asks why I am so angry.

I truly miss the physical grace. I don't mean to be sexist about this, but maybe it is a greater loss for a woman. Women have been judged by their physical appearance and grace since time began. Even now while women are valued for their intelligence, their physical appearance is still of importance.

The inner grace you spoke of, well, I hope that grace has always been within me.

The grace I hope to achieve is the grace to accept the PD and live my life caring for others and not withdrawing within myself and the disease.

Thank you for being here and sharing your words.

Rhonda


LadyLou
Member

Posts: 54
From: Hawaii
Registered: Dec 1999
posted January 09, 2000 06:15 AM

Greg: the word Grace is also defined in my Webster's as "a sense of what is right; decency, thoughtfulness toward others." This too resonates with me. If we can be "set free" from our Parkinson's by grace then what a wonderful chance to by exmple demonstrate that "life can be lived fully" even under the most difficult of circumstances. This progressive loss of physical grace must be grieved first; only when that is completed can I move toward spiritual grace. There is much in what you write that is exactly what I have pondered, tho without the grace with which you communicate. Your physical grace may be diminished, but your head and your heart demonstrate grace in abundance.

Aloha, Lou Ann


larry j
Member

Posts: 94
From:
Registered: Jan 2000
posted January 09, 2000 09:22 AM

wow!...larry j


fj
Junior Member

Posts: 28
From: Ontario Canada
Registered: Jan 2000
posted January 09, 2000 10:14 AM

Greg , thank you, thank you so very much for your article on grace. I have been feeling weepy and very low for months now to the point where I just wanted to give up and stay in bed. I thought no one feels like I do, everyone is handling their P.D. so well. The loss of dignity, grace etc. has been most difficult for me.I was the dynamo on our teaching staff, had a great sense of humor ,was noticed for my energy, joyful demeanor and style. Now I'm noticed because I'm too slow for the person waiting behind me, or causing people parked beside us to wait to get into their car because I can't get out of the seat quickly enough and on and on. I am so glad that others are having these feelings too.Now maybe I can stop feeling so alone and find a place to accept my "losses" God Bless you Greg .You have touched many . Thank you. Fran


aj
Member

Posts: 90
From: Brooklyn, NY
Registered: Jan 2000
posted January 09, 2000 11:15 AM

I am not surprised that you have written on this subject, Greg, for whether you are aware of it or not, you have your own cache of grace. This is some of what acquiring and losing grace has meant to me.

As a child, particularly a pre-teen, I was gangly, all legs and arms, always the tallest in my class. One day in seventh grade, as I got to the bottom of a staircase at school, I noticed that a teacher had stopped and was looking at me. I assumed he/she (I forget which) would want to know why I was in the hallways during a class period. As I got to the last step the teacher said,“You walked down those stairs like a queen.” And he/she continued on his/her way.

Certain memories from childhood become defining moments in your adulthood, and this was one of mine. I could walk like a queen. And graceful is a word that people have often over the years used to describe me rather than any of a number of other words used to describe other people.

When I was first diagnosed, I had no idea what having PD meant. There is no PD in my family. I even had to ask the doctor just what PD was. Getting the diagnosis was still more like being told I had bronchitis than an incurable degenerative neurological disease. I did not know that a few years later I would feel more like a court jester than a queen.

Part of being a queen was always being in control: physically, intellectually, and emotionally. Queens are never laughed at. It is a role ruled by the brain. The court jester loses her footing, speaks nonsense, and laughs or cries at the drop of a cap. The jester is ruled by the heart and people point and laugh, or make comments behind their hands.

IF I believed in a cosmic force that took each of our lives into consideration, I might think that there was no better way to get aj to appreciate life than to take physical grace away from her, and to make her live by the heart and not the head. And to a large part this non-plan has succeeded. In all my bright church-going years, college years, graduate school years, and years in the New York publishing crowd, I wondered what about life could possibly make it worth living. But I was asking as a queen, from my head. With my heart, I know that the fact of our existence is enough. (I have heard people say this many times before and I never understood it. I can only think that the difference is hearing it with my head or with my heart.)

PD robbed me of a lot of worldly things. But, it has, oddly enough, opened my heart to the world. So I am happier being a clumsy jester with hopes of cultivating a graceful heart than reigning as a graceful queen with a clumsy heart.

Sonya
Junior Member

Posts: 24
From: atlanta, ga
Registered: Jan 2000
posted January 09, 2000 02:18 PM

Dear Greg,

BRAVO!!!


Scott
Member

Posts: 119
From:
Registered: Dec 1999
posted January 09, 2000 02:40 PM

Greg.. you make a good teacher..eveyone here does..I consider myself fortunate to have your example to learn from.

Im learning how to handle issues I dont even have a name for..Im afraid I dont handle it very well..when people "do" things for me either..(it doesn't happen too often yet, but it does happen occasionally..and I usually find it very humiliating)..

So you've helped me begin to see.. that maybe I shold practice a little more patience..and grace..when someone tries to "help" my fumbling fingers reach for a napkin..or find a keyhole..or when someone picks something up that Ive dropped..or yes, even when someone finishes a sentence for me...

I saved this page into a special folder..wehre I can go back, re-read it..thanks again Greg...Scott



dona
Member

Posts: 66
From:
Registered: Jan 2000
posted January 09, 2000 04:44 PM

dear greg, your posting has much to give a caretaker to think about. How many times have i rushed to pick up something my husband has dropped, how many times have i offered to finish a sentence for him when his memory fails him for words, more times than i care to admit. you have made me stop and sit back and watch and wait to see if my services are needed or required. Its difficult to see someone you love fumbling around when in 2 sec. you can do it for them. In the back of my mind i have known hat my help might not always been appreciated but we have been married long enough buy now I should be able to recognize honest need to be
helped and the need for him to do it by himeself so just thanks for reminding me

------------------
one n donna


larry j
Member

Posts: 94


AnnT
Member

Posts: 34
From:
Registered: Jan 2000
posted January 10, 2000 05:56 PM

I am not accepting this PD with grace. In fact I am ticked off about it. 18 years ago I had breast cancer. That I accepted with grace, most likely because I knew I had a good chance of completely recovering. The thing about Parkinson's is that we know today is the best we're going to be. When I was diagnosed 3 1/2 years ago, my neuro said a cure was expected in 5 years. That does not give us much time. I just can't see it. Maybe my Depression - and I am in a shadowy kind of depression, one that lurks in the background but never comes out full force - is preventing me from looking forward to being cured. It certainly can skew one's thinking. However, no matter what, I am ticked for now. I guess grace will come in time.


aj
Member

Posts: 90
From: Brooklyn, NY
Registered: Jan 2000
posted January 10, 2000 08:05 PM

Ann T.

I just want you to know that you describe how I feel often enough. I bounce between positive acceptance, self pity, and intense anger (all set against a wash of depression). It seems that all those emotions are likely to hang around for the rest of my life. The thing to do, as far as I can see, is go ahead and feel them. Feel them to their fullest. And then move on.

When I was first diagnosed, I rather expected magically to be given that aura of acceptance and wisdom, i.e., grace, perceived in some sick or disabled people. That would at least be some compensation for having PD. But, where was the prescription for THAT pill amongst all the others? IT wasn't there. And I am still trying to find it in the PDR.


pegleg
Junior Member

Posts: 8
From: Watauga, TN USA
Registered: Dec 1999
posted January 10, 2000 11:02 PM

Beautifully conceived and written, Greg! It helps to put everything into perspective. Grace to you! Peggy



Greg
Member

Posts: 68
From: California
Registered: Jan 2000
posted January 13, 2000 11:47 AM

You know, I had an interesting experience on the "might as well be a red-eye" out of Atlanta last night heading back to California. It was about midnite Atlanta time, meal and movie over, plane mostly empty so you could see the lights over the few people still reading. They were showing a CNN made for airlines program, and they started a feature on Muhammed Ali. Lots of present day walking and joking around his farm, intermingled with career clips.

I noticed that first one, then a couple, then the whole plane in front of me put down their books, reached for their headsets, and just watched. The big lug next to me was sniffling when the ten minute segment was over. After the segment, while the CNN cast was still going, everybody slowly went back to what they had been doing.

I thought to myself, those few moments were a perfect example of both how much the disease can take from someone, and how the inner grace of that same person was powerful enough to suddenly unify twenty-five or thirty sleepy people deadheading at 35,000 ft at midnight on their way to California, as they silently reached out for what he offered in his whispery voice and being.

------------------
Greg

I am still missing that grace thing. I thoroughly hate this PD, and I am more and more suspicious that the cure won't be here in my lifetime.

I mentioned in an earlier post under another topic that I did not like people offering unsolicited help. The reason is that while I am aware of what I cannot do easily, I don't need someone to remind me. "Do you want me to cut that for you?" stated as I dine with others in a restaurant, takes me out of my fantasy world where I think I am going unnoticed and whips me back into the real PD immersed world where I am not doing so great. To me that question means, "Everyone notices your awkward struggle and so I am asking to step in and give you my food-cutting expertise." There was once a book called, "I'm Okay;You're Okay". This offer comes from the book "I'm Okay; You're Not!"

I am not against asking for help. I am just against unsolicited offers. See how graceless I can be?

Thanks for the thread A.J.

Ann

I can't sleep either!

But I loved Greg's grace then and still do.
Peg

I missed it first time it was posted so thank you Peg for alerting me about this wonderful essay. and Ann for sharing it. For me grace is mainly spiritual as in "Amazing Grace" which reminds me of the magic we shared in the hills of northern Kentucky, first to mourn the tragic event of Karl's untimely death and later balanced by the joyous event of Greg / Ann's wedding. That was when we could only see the dark at the end of the tunnel. Now we are in the dark at the end ofthe tunnel, so we need all the grace we can muster in the face of adversity.

Yes, Perry. That's the spiritual renewal we all seek. I remember that Jaye, Paula, and I sang "Amazing Grace" around the campfire that night. Ahh, what sweet memories!
Peg