The Mime
 

I sat and watched as the mime, groping for an exit, ran his hands over the inner surface of the invisible cage that held him captive. I could identify with the fearful, yet inquisitive expression that was written across his face. He captured the emotion well. Then came the panic.

Having spent the better part of an hour searching for an exit and finding none, the mime's expression began to change. His movement became hurried at first but quickly evolved to frantic. His hands began to flail, whipping the air, as though they might be capable of creating a passage way in the swirling air. Exhausted from extreme movement, he finally collapsed in a corner of the unseen prison and wept until sleep interrupted his weeping.

Upon waking, his eyes slowly opened, as though to say, "Perhaps it was all a dream." Upon discovering that it was not, anger overtook him. He began to rail silently and beat the walls of his shell, as his eyes searched the audience for a champion to come and rescue him. None appeared, for none could see his prison from where they sat. In order to view what the mime viewed, one would have to enter and become captive. Then there would be 2 mimes.

michael

beautiful
 

Michael,
That was so beautiful. How perfectly it describes my life. I'm so glad to see you're back. I have missed you so.

Mary

Michael,

It's about time you showed up.
Or is it something else?
The mime is running out of time
Will anyone see the whole picture

And rescue the mime?

Paula

The Statue
 

Outside my window the world performed its daily chores. The sun rose gently, peering slowly over the eastern horizon, turning the night sky into an artist's canvas before revealing itself in full array. My neighbors were already out the door in an attempt to get a jump on the morning traffic. Interstate 10 began to grumble under the weight of the 18 wheelers as they vied for position in the fast lane. The occasional chirping bird and barking dog added background to the carpenters' nail guns, as they fastened wood to wood, still repairing damage from last years hurricanes.

6:45 a.m. tick 6:46 a.m. tick 6:47 a.m..... I counted the minutes as they crept by. Still 13 minutes before my first dose of medicine for the day, my statue sat in my chair by the window, glued and frozen in a state of motionless awareness. The 12 hour period since yesteday's last dose of meds had again taken its toll, but soon the rigor mortis would yield and release my statue for a season, allowing me to perform still one more day.

Today, when someone casually asks me the question, "How are you doing?" will I answer them tuthfully, or will I lie one more time? I will probably lie. Afterall, I am a walking statue, and that is a miracle. Isn't it?

michael

michael-
 

can you possibly be my old friend michael from la?? only he or someone with his gentle soul and tragic/slightly skewed sense of life could wriite something that touches the human condition and those liveing w/ pd in such a hauntingly poigent way. thanks for aharing your marvelous gifts with us.

Time
 

Day after day, the same items, plus a few more, continued to appear on my honey-do list. At about the same time that the list was taunting me with 20 items, I read an article concerning a problem that many people with Parkinson's disease have with organizational skills. It suggested that the individual should concentrate on only one thing at a time, accomplish that task completely and then move on to another task. "Ah ha, that's it!" I thought. I proceeded to explain the situation to my wife, who seemed to understand my dilemma. We agreed that my honey-do list should contain only one item at a time.

The next morning I made my way to the kitchen counter to see which item I was to tackle that day. Astonished does not even begin to explain how I felt as my eyes fixed on the assigned spot for my honey-do list. What met my gaze was 20 honey-do lists, each containing one item. As goes the famous line from the movie Cool Hand Luke, "What we have here is a failure to communicate." I got a good laugh out of the situation, and that is about all I accomplished that day. Any suggestions?

michael

Thanks, Mary, Paula and Joan

Yah Mikey..
 

It IS aboot time ya showed up , eh?:)
Your advancing PD hasn't changed you much Michael, you are still one for the abstract.
We're all getting older here, but hopefully better (in a different way than physically).
What are ya up to these days old man? Long time no hear from.
I hope that you've at least been lurking?
Lotta new people, but they are still in the "dark stages" of newly post DX, and haven't found their "voice" here yet. Won't take long, I suspect before they'll be taking over.
You're an ol timer here, and despite it all, I still hear a note of depression in your "mime" post. You should know better than that by now. I always knew you had a big resistance to taking your meds. Come on buddy, you don't count the minutes to your next "scheduled" dose. What are you going to accomplish by that. Yes ,i'm giving you H-ell, I always did, didn't I:D .
Peace brother, and take more meds ,K. cs

Unreliable
 

I am developing an almost phobia about handling my finances. It gives me a stomach ache. I just keep pushing it, avoiding it, then panic. Try getting family to perceive this as anything but irresponsibility....it is irresponsibility, but with a neurological component that is almost impossible to explain.

I used to be responsible. But that doesn't help either. I write my own to do lists, mentally of course, and never, ever, finish the list. If the list is long, I shut down.

But i'll work on writing for advocacy publication all day, with the bills piled up right in front of me. There's no defense....I only have selective focus. To anyone outside my "mime cage", I look lazy and am bringing it all on myself. Well...yeah! But I don't mean to or want to.

:o Paula

I Understand
 

Paula,

Set up as much of your financial dealings as possible through online banking. Get rid of the paper chase.

OR

Hire it done.

Just don't let it cause anxiety. We have enough of that.




Chuck,

You caught me. Yep, I am still trying to limit my meds. I am up to 800 mg of sinemet per day and 15 mg of Requip. I know that what I have written thusfar seems to be seasoned with a sprinkle of depression and a pinch of woe-is-me, and perhaps, in reality, it is, but I am not dead yet. A least, I don't think I am. In the past few months I have built a 10' X 12' storage shed, stained all the brick on my house, built 8 shutters, stained them and mounted them, reconstructed my front door, assisted my two sons in painting 3 jobs, installed several light fixtures, and...well...you get the picture. I think I'm tired, and there are still 12 items on my newest honey-do list.

Will the fun never cease?

Oh, and did I tell you that I moved from Baton Rouge to Lake Charles, Louisiana, where my wife and daughter opened an import furniture store? I hurt everywhere.

michael...ouch

hello dear micheal...from tena
 

hi michael,
I have read the mime, but for some reason -I haven't ever liked mimes?
;)
I have found this out in my own life -we must all live in the day we have.
here is a sermon from a woman who has lyme disease

hope helps -
By Annie Giddings: A teenager/ and lyme disease patient
A "sermon" given on August 21st, 2005 at the UU Church of Middleboro)

Dealing with chronic illness has shaped and changed my life significantly so when I was asked to run a service this summer, choosing a topic wasn't difficult.
Chronic illness is ever-present in my life.
Dealing with chronic illnesses has taught me things I probably wouldn't know otherwise - how to be thankful for the smallest things, how to be compassionate and sympathetic to others without feeling sorry for them, how to sort out what's most important, how to find peace in the midst of turmoil.

In "A Delicate Balance: Living Successfully with Chronic Illness," Susan Milstrey Wells says, "Chronic illness isn't a gift in the traditional sense of the word. We don't want it or need it, it never fits, and we can't take it back. Only the most idealistic among us would say that we are grateful to be sick. But once we become ill, we can resent and reject the experience, or we can learn from it." (p. 217) In this spirit, I choose to make the best of a bad situation and not get lost in self-pity. I choose to think of myself as a survivor of chronic illness, even though I am still in the midst of surviving, because I do not want to become a "victim".
When one is faced with an incurable or chronic illness, it is often difficult to believe that healing is possible and it often feels like hope is slowly draining away. But even in these situations, there are opportunities for positive things to happen. In "The Nature of Healing", Ruth Rudner writes, "Healing. The dictionary says it means 'to make sound; to cure of disease or affliction.' Yet, even where curing cannot happen, healing is possible. The aching heart can become whole" (p. 57). In this frame of reference, healing is not about the physical body, but about the spirit, the soul. I have recently been taking time to meditate everyday. This is now becoming a source of hope for me, hope that even in the midst of feeling horrible physically, I can find some mental and spiritual calm.

In "The Anatomy of Hope", Dr. Jerome Groopman writes, "Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that 'things turn out for the best.' But hope differs from optimism. Hope does not arise from being told to 'think positively,' or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. Hope is the elevating feeling we experience when we see - in the mind's eye - a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion. Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them" (p. xiv).

I do struggle with this at times. It is hard to look at a bad situation - one that most people have not been through and therefore cannot fully understand - and find the good in it. It's like being stuck in a never-ending winter, like the one we had this year, but still being able to look outside and smile at the drifting snowflakes. Susan Milstrey Wells says, "Sometimes I'm a bit uneasy talking about how our lives have changed for the better since we've developed a chronic disease. We can all rationalize the worst circumstances, but that doesn't make them good. Are we putting our heads in the sand when we find meaning in a life with chronic illness? I don't think so. After all, we could find that our lives are devoid of meaning and rail at our bad luck, but then we would be both sick and miserable." (p. 223)
I don't believe that hope means believing that things will be fine and not worrying about what will happen, refusing to deal with reality. When dealing with chronic illness, I don't think hope means holding onto the (usually) false belief that, if you're only patient enough, a cure will happen. Hope is much more than that. Hope is not only being able to look at the bleakness of winter and see something to marvel at, it's also believing that there is a way to transform your suffering into something beautiful. Far from being an attempt to escape reality, it is a way to embrace it; Being able to come to terms with the way things are but not accept everything as inevitable. There are parts of being sick that I do not accept and that I'm not okay with. I don't accept the situation as the way things will be forever, but as the way things have to be right now.

Hope does not deny pain, it does not reject grief and mourning over the life that has been lost. Hope helps to keep everything in perspective, it helps show you that there is the possibility for something good, something bigger than anything you were bound for in your old life. And hope is believing that, in the midst of the storm that seems impossible to overcome, there is something there to cradle you. I don't believe that hope is reserved for those people who believe in a greater power, but I know that, for me, the thought that there is something bigger than me is comforting.

When I'm having a hard time with life, one of the most natural things for me to do is to sit by the ocean, listening to the waves crashing to shore. The sounds comfort me. The beauty comforts me. And when I look out across the ocean and think about its magnitude, I can't help but feel a little closer to that greater power, whatever it may be, and that comforts me, too. At those times, my belief in a bigger plan is renewed and I know that, one way or another, things will turn out okay. Maybe not the way I think it should turn out, but it will be the way it's supposed to be. A quote by Edward Teller explains my thoughts on this much more eloquently than I could ever put it. "When you come to the end of all the light you know, and it's time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: Either you will be given something solid to stand on or you will be taught to fly." So I keep moving forward into the darkness and so far I haven't fallen.

In the end, it's hard to deal with chronic illness. It's hard to be faced with losing the life that once was, or that never was but should have been. It's hard for me to see all my friends graduating from college, moving away from home, starting new jobs, and doing all the things I thought I'd be doing now. But I've realized that, no matter how stubborn I am, my body just can't keep up and something has to go. I just try to fill my time with things I enjoy that don't require a lot of energy or concentration - watching a good movie, listening to music or books on tape, and chatting with friends online. And every once in a while I have a better day and make it out to do something fun.

I also try to keep some level of humor and light-heartedness in my medically oriented world. I have nicknamed my port-a-cath "Winnie the Port". And, keeping with the theme, my IV pole is Piglet and my portable IV pump is Eeyore. I joke around a lot with a good friend I made through an online group for teens with Lyme. We can be really silly when we talk online, no matter how badly we're feeling, and that helps us forget about aches and pains for a while.

My hope is that I will make a difference, leave my mark on the world. In the words of

Ralph Waldo Emerson, "Do not go where the path may lead, go instead where there is no path and leave a trail." I don't know where my path may lead me,
yet I know I'm in it for the long haul.