View Full Version : Watching them watching you.
01-27-2007, 10:03 AM
Caught in a stare, they quickly attempt to look past you, or they dart their pitying eyes pretending the stare never happened. One would think that after thirty years of friendship they would be able to confront your illness with a bit of dignity and truth, and set aside the patronizing, half-hearted, overused, "Well-you-look-good," approach, when you know as well as they that you don't look good at all. You saw what you looked like before you left the house, and you left anyway. Tonight you decide to confront the issue head on. You take a step toward them...okay, a half step, and on your face you have plastered...okay, draped the biggest, crooked, little smile you could muster. Your eyes look up. The stare is back, and worse, they know you're coming. Just 20 more feet. That's only 120 festinating steps. Come on feet. Don't fail me now.
(please add your paragaph...just 1...to this little story. Express yourself.)
01-27-2007, 10:23 AM
...and you don't care in the same way you did a minute ago. So you start hopping toward then on one foot (or whatever trick breaks freezing for you). As you collapse into a chair and before any words can escape their open mouths, you laugh a little bitterly and say, "See what a crazy disease I'm dealing with? Explain to me why I couldn't walk but I could do that! It's bizarre!"
these days, when a hug is the expected greeting to even the newest acquaintances, you haul yourself out of the chair, and go gamely forward in hug position. A second later you regret your attempt at politeness, for the hug has put you off balance, and to keep from falling you are forced to kling, in a tight embrace, to the surprised and bewildered hugger, who gets the wrong idea and thinks you are being embarrassingly affectionate........
01-27-2007, 02:55 PM
Then, as he peels you off of him,and holds you away at arm's length as you steady yourself, he asks with an embarressing uneasy laugh what you have been doing lately. So, you tell him you've been working on various projects and then he interrupts you and with some lame excuse says he has to go...
01-27-2007, 03:08 PM
...he walks away, wondering if there is any way he can catch the disease.
01-27-2007, 03:27 PM
for a friendly face...no,a friendly space would be better. The chair that you left is now taken. There is another, but it seems to be 2 miles away. You have to at least try. You begin your slow, seemingly methodical trek, seeking only a comfort zone from which you can again function. Will the chair still be available by the time you arrive? "Act natural," you think. Trying to remember what that is, you continue.
by the completely oblvious chatterbox you have successfully managed to avoid until this moment. He is full of information you don't want to hear, and as you try to unglue your feet from the floor to reach the chair, he
01-27-2007, 04:39 PM
reaches out his hand to steady you and the impact of his hand sends back into the chair. while he stands and wonders if it were you or he that had caused this. You glare at him and he once more turns away in a mood of anger, not at you but at himself for interferring in what could have been an injury for you. I should not have done that and I won't
01-27-2007, 04:52 PM
"Thank you", I called out so he wouldn't be upset and proceeded to tell him I was fine, that I had plopped into many a chair, that plopping was a way of life for me, that one time I plopped....as he excused himself. I smiled to myself, chatterboxes don't do well with other chatterboxes. But then, I had to go to the bathroom...
01-27-2007, 05:38 PM
There are no restroom signs in the banquet hall, but through the large opening, just outside the massive room, in the foyer, to the left hangs the blue restroom sign. To get to it one would have to maneuver through a wall of people. Then it hits me, "What if I can't make it in time?"
I reach the bathroom I am shuffling with little tiny steps, but I make it by the skin of my teeth. When I finally come out of the bathroom, a line has, as usual, formed outside the door, of desperate people. Just as I'm wondering how to get through all those people the chatterbox comes to my rescue. He helps me back to the chair, and it does not take long before I realize that I have totally misjudged him. He may talk a lot, but
01-27-2007, 06:27 PM
at least he knows that even though I walk like a drunk and talk like a drunk, I'm not really drunk, but wish I were..............where'd I put that bottle?
01-27-2007, 10:47 PM
Well if it walks like a drunk and it looks like a drunk -is it a drunk?
I ponder as I look at all the temporarily healthy people around me. At 57, I am aging anyway so maybe it's youth I miss. I can't really say that I am the same on the inside either....drat. But just try getting it across to someone you haven't talked to in a while that it can be a good thing sometimes, well even overall........then who should I come across but a friend and liason between grassroots and the orgs. She was going to leave immediately and fly to China to adopt a baby girl there. What a sight for sore eyes. Someone I could relate to. A fine girl with her own row to hoe. This Round Table was a pretty big deal and tons of work for her, she gets her notice she is leaving for China the day after the Round Table and is sooooooooo busy and right in the middle of what's getting to be one of the last weeks of prep, her father has a heartattack and dies in his late sixties. Her husband is a pastor and her father was going to marry the church secretary. Should i go on?
Well, anyway there she was - and she looked like she needed a friend as badly as I did by then.......we made eye contact and both looked relieved........when I made my way over to her, as always, when I am not concentrating, no matter what is in my riight hand, it heads for the ceiling. So many times people have had to tell me I was going to spill whatever was in my climbing dyskinetic shoulder. Dang that must look weird, but I started feeling better when I looked over, and saw some guy hopping across the floor on one foot........
01-27-2007, 11:01 PM
As I shuffled into the room I saw this woman doing strange things with her arm. The liquid that had been in her cup was now all over my face. As I wiped the liquid from my eyes, this strange man was hopping across the floor on one foot. I knew then I was in the right place.
01-27-2007, 11:15 PM
The actual Paula-W is belly laughing now......carry on...
01-27-2007, 11:56 PM
sitting inside the security booth,m peering through the one way mirror, I wondered it the the two of you had come together. It wasn't long before I realized that neither of you had an inkling that the other was here. Then again, why should you. That was a shallow assumption on my part...a bit like asking me if I knew someone else just because they wore the same brand jacket as I wear.
I had been watching for over 2 hours. I noticed all the stares. Some were of pity, a few of disgust (I never understood those) but most were of admiration and self evaluation. I read lips as a part of my job with security, so I had an advantage. One would stare for a while and then turn to a partner or friend and say, "I hope that if I ever get a debilitating disease I have enough of what it takes to go living like that person, as she nodded in one of your directions.
I too was amazed by your determination to be a part of life...not just being, but actually living. That involves taking life and wrapping yourself around it, refusing to let go until it includes you in its existence. At the party there were dignitaries, famous people, actors, etc. and two people with Parkinson's disease whom I added to my heroes list. Thank you for not giving up.
I did notice that I was not the only PDer at the party. With my limp and cane and white hair, PD is not what comes to people's mind when they see me, they think "tottering old woman". I wish they'd skip the ''old", but 1938 is beginning to be a very long time ago.
But back to the party - I stayed in my chair and had a really lovely evening. At my advanced age you would think I had learned not to trust my first impression of people since I know that my first impressions are almost invariably completely wrong. The chatterbox, whom I had so misjudged, turned out to be both kind and clever and entertaining. He introduced me to all his interesting friends at the party, among them a woman who walked like a drunk and talked like a drunk. I knew, of course, that she wasn't a drunk but a fellow PDer. She had just won the battle over breast cancer. Her courage and strength were inspiring. Most of us have quite enough trouble handling one debilitating illness.
The woman I saw out of the corner of my eye spill her drink was not tipsy either, nor was the man with the expressionless face slow of mind or in a bad mood. Thinking back on the party I think there were a lot of PDers present. As ever, we're a part of the picture of everyday life. We get used to having PD, to the cruel distortions it imposes on our movements, the aches and pains, and we don't allow it to hold us back from joining the fun, from enjoying life.
01-28-2007, 10:08 AM
I was looking for the emotional side of Pd. I think we captured a little bit of it, but I don't think we have really expressed how we feel down deep...you know...in our private thoughts. Dare we speak them?
The Emotional Side
“Well, you're looking good.“ How often have you heard that line, followed by, “How do you feel?” How do you respond? Do you lie, tell the truth or find some middle ground on which both you and your friend, acquaintance or loved one can be comfortable? Do they really want to know the truth? Do you really want them to know the truth? Perhaps you don't really want the truth to be heard coming from your own lips.
Let's face it. Let's look it square in the eyes, go toe-to-toe with reality, call it what it is, be frank about it, make it perfectly clear, mince no words, tell it like it is, make no bones about it, be honest about it. Afterall, this disease is not like a cold or a sore throat that will make one miserable for a while and then go away.
This disease still has the words, “There is no known cure.” attached to it. It still has the prognosis of, “progressive, degenerative,” stapled to its nature. It is debilitating, in that it continues to sap the strength and vitality from every cell of the body, eventually making one feeble and incapable of self-care. So, how do I feel? Do you really want to know, or are you just asking?
I feel angry (displeased, mad, indignant, irritated, incensed, exasperated, enraged, furious), because I allowed this to happen me. Do I blame myself? Yes, I do. Do I blame only myself? Not in the least.
but with humour - no, I don't really want my family and friends to know as much about my condition as I do. I don't want see them look at me and wonder if my mind is going to pot, if I've reached stage number this or that yet. I don't want them to anticipate my decline, but I do hope they will step in and help my husband when my decline does set in.
I want to eat my cake and have it too. I try to be as 'normal' as I can - to still be my old self, and not the feeble invalid I will slowly but surely become unless I kick the bucket before I get to that point. And at the same time I also want compassion, I want them to know that everything I do takes effort and perseverance and mulish stubbornness, and I childishly crave praise for my efforts and my successes.
Anger? Yes, I'm angry, I'm furious, but I'm most of all offended that nature has had the cruelty so to humble and humiliate me.
01-28-2007, 02:15 PM
:hug: Come on folks! No matter how bad it gets, you are still breathing. You all obviously have a great sense of humor, you enjoy other people's company, you have a very creative nature, and you are all genuine, caring, people. You have found out you are stronger than you ever thought you could or wanted to be.
You have all aged with more wisdom than most people will have even after a lifetime of experiences. You all have been teachers to myself, you've corrected my errors, put up with my hysterics, my paranoia, my pushiness, my bullheadness.
I can't say how grateful I am to have met all of you.
01-28-2007, 04:50 PM
i didn't know what happens when you push the thanks so I tried it out on you Vicki because that post was very compassionate.
01-28-2007, 07:36 PM
Ditto, Ditto, Ditto
01-28-2007, 09:37 PM
comes a time, when the party is over and you have just your introspections to keep you company as you wait for the peace and painless sleep. you remember the little things that you didn't allow to bother you at the time but now seem so blatent...the little boy at church who stared at me in my wheelchair and asked his mom loudly "what's wrong with that lady?" his mom quickly tried to remove her son from my vicinity but i called out to him and he cautiously came towards me. it's ok, i tell him, to wonder about things that you don't know about. i tell him that i have a disease-like i am not at ease with body and that it is called parkinson's. i explain to him that, like a car needs spark plugs to make it run smoothly, people need something called dopamine
and that since my brain doesn't make dopamine anymore, i don't run smoothly. i shake and i freeze and i have all sorts of unpleasent things that happen to me. i tell him that it isn't contagious but that it can happen to anyone so he must always listen to his own body. we solomely shook hands and with a self-satisfied smirk on his face, my new friend went to tell his mother. this incident gives me a good feeling-like maybe i made some small inroad into the ignorance and fear that people feel around us. then i remember the other day, when i ran into my old friend jeanie. haven't seen much of her since i becoming really symptomatic-not much at all. i was with my kids and jeanie asked them how i was and what i had been doing. i just stood there, feeling like an idiot savant, listening to my kids give her a quick
and very kid-slanted view of my recent activities.
she said she had to go and finally looked in the direction of my face and said good-bye. i was floored by the realization that my illness was a threat to her security and well-being. if i could develop this disease, then the next step in reasoning had to be that she was also vulnerable and she didn't like facing that possibility. much better to not face it head-on; if she ignores it-it might go away. i could actually feel the fear coming from her. i scared the bejeebies out of her! this thought made me feel badly and wonder what this new-found power to make normally good people turn tail and bolt would do my already skewed psyche. finally, as merciful sleep began to take me to that painless place, i thought that life is like that: you take teeny steps forward and then get shoved back ten giant steps.
01-29-2007, 06:46 PM
Not my usual" tongue in cheek,take the bull by the horns" self in response to this thread.
I am sitting reflecting over the years.Trying to remember what "normal" is like.
And I can`t recall "normal." It seems like I have always been like this...each day laboured,a struggle,another battle or obstacle to face...yet another strategy of coping to pull out of the bag.Just when you think you`ve cracked it...something else...always something else to fill that part of your mind that is given over to Parkinson`s disease.
Oh,to wake up in a morning,spring out of bed refreshed,and eager to start the day.Instead the bodies mechanics lurch and slowly grind themselves into a semblance of order,fighting the pain of dystonia before my first cup of tea.
Then hoping someone close doesn`t spring a spontaneous outing into the air,That would mean looking them in the eye,gritting ones teeth,and smiling a response of " I`d love to go..." knowing that the day ahead will be fraught with major obstacles and pain...lots of physical pain.
Or...instead,a furtive glance downwards whilst you search for excuses not to put yourself through the rigours of an outing,which to the healthy ones,is a breeze.We almost feel we have earned an olympic medal if we manage to slap butter on a slice of bread.
Yet...still I am not sad.I have been dealt this hand of cards,and like all of you,will keep on playing them to the best of my ability,until such a day arrives that I deal myself the joker...and do what I`ve always said I would do,when no longer functioning as I would wish.
Or hope for the ACES to come out with the advent of a cure.
We manage.We spend our lives managing first,and living second.
But hey....what terrific managers we all are.
Yes...I guess we should at times,tell it as it is...give each other an almighty hug,a knowing smile...take a deep breath in,renew our resolve,and carry on the fight.
What else is there to do....?
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