challenges

Staying in Focus with Michael J. Fox

Thursday night, Michae J. Fox returned to television with a new show.  Over 2,000 people hosted premier parties to welcome Michael back, and I was one of them.

Diagnosed with early onset Parkinson’s at the age of 29, Michael has lived with this disease for two decades. He has been not only an inspiration to those of us living with Parkinson’s, but he has provided a beacon of hope for us as well with the launching of the Michael J. Fox Foundation for Parkinson’s Research.  On the website  www.michaeljfox.org/‎, you can Join Team Fox and  host  or take part in fundraisers, sign up to volunteer for clinical trials (many of which fail to be conducted due to lack of volunteers) apply for a grant, have your questions about Parkinson’s answered and learn about the Foundation’s purpose and how they are helping the research teams to find  a cure.

Michael inspires me with his can do attitude and the pragmatic way he has handled the challenges of life with Parkinson’s.  One of my favorite Fox quotes is: Whatever big dream is driving you, you only can’t if you don’t.  Michael is right. You can do anything, if you just give it  a try, but you’ll never know if you don’t.

I also like the response Michael gives his kids if they have some minor thing to complain about. Michael had learned that  a lady, trapped in a tree during  one of  those tsunamis that have occurred in recent years, actually gave birth to her baby in the tree and waited there until help arrived. So when the kids come in with their minor complaints, Michael says, “A lady had a baby in a tree. What’ve you got?”

We can always look around and find people struggling with something far worse than we are. So instead of whining and complaining, celebrate the positives, look for the silver lining (or at least the humor) and don’t forget to follow your dreams. The premier party was all about optimism and  Michael J. Fox is the poster boy for that!

The new show is  a magical mix  of humor and poignancy. It deals with the challenges of living with Parkinson’s with a heartfelt humor, and there were moments in the show when  the message touched my soul. In one scene,  Mike’s wife questions his apparent attraction to a woman who moved into their building and Mike answers that it wasn’t so much that he was attracted to her, but that she was attracted to him, that after all he had been through, he could still be attractive to someone despite the Parkinson’s. That is one of the fears all of us with chronic diseases have – that people will see  only the disease, and miss all the other wonderful things about us. Scenes like these make the show so much more than a typical sitcom. and I applaud those who write for the show and  those who assembled the excellent cast. Well done!

I had  a small gathering of friends and  family for my premier party, but we had a good time. The laughs were fun to share, as was the food and conversation. We all agreed that the show was entertaining and spot on, and I think everyone left with their spirits lifted.

I look forward to the next episode. In the meantime i will focus on the can do an d the big dream and put my pesky disease in its place right at the back of the line.

After all, a lady had  a baby in a tree… what’ve I got?

 

Here are  a few pictures from our party:

We had agreat time and shared some laughs!

We had agreat time and shared some laughs!IMG_2236IMG_2233 prizes and folders filled with info for my guestsIMG_2238

Yum! Goobers and rasinets!

popcorn ready and waiting for the show to begin.
popcorn ready and waiting for the show to begin.

 

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Staying in Focus: LIfe is the Journey

Daily Prompt: JourneyIMG_9657

We all on a journey because life is the greatest journey we will ever take.. Where we began and where we end is not the focus of life, but the journey through it is. What have I learned in my 60 year journey through life so far? I’ve learned that there will be joy as surely a there will be tears. There will be success  and there  will be failure. There will be moments of fear and acts of heroism. There will be days when I think  I’ve  had just about all I can take,  and days so beautiful I never want to see  them  end. I’ve learned that my life experience is up to me. I can make choices and I can make changes. The journey is not always  a straight line from beginning to end.  Sideroads and hidden paths sometimes confuse my progression, other times lead me to new experiences that help me grow.

Take my Parkinson’s disease, for instance. Never that one coming. A bit of a roadblock,  it has become my constant  companion for six years now, and  it has, of course,caused me to make some changes in the direction I was going on my journey before PD. As John Lennon so wisely observed, Life is what happens while you are busy making other plans. My advice is  make plans, but make them out of silly putty,  so they can stretch in whatever direction your journey requires. PD may have slowed me  down, but my journey continues and I am moving forward.

Let me add that the journey will  provide opportunities for mystery and promise, challenge and  despair, triumph and heartbreak. Life is not a journey for the timid or the weak. It is a journey of discovery, of finding a way past the roadblocks, meeting the challenges,  finding the opportunities to be magnificent.  Discovering who you are and what you are capable of achieving  is the quest of the journey.

I try to take my journey one step at a time, not so intent on trying to see what is coming that I miss what is, right now.  If I am mindful, when my journey is complete, I will have the memories of a life well-lived; if not, I’ll be filled with regret for all those lost opportunities to make my life matter , to embrace my journey. no matter where it leads or how it challenges me. I intend to complete my journey with no regrets.

So, perhaps, I will see you out there on the road,. Our journeys intersect and mix with others constantly. May your journey be just what you need it to be. may you be what your journey needs you to be – magnificent.

Focus On: Challenges, and Gratitude


Photo05_3
It has been a year of challenge for us, and it doesn’t look like it’s going to get better any time soon. Mom wasn’t able to tolerate the pill form of the chemo, and now, after a week or so to recover from that protocol, she is starting weekly intravenous chemo, which will more than likely cause her to lose her hair as well as having to weather the same side effects .as before – mouth sores, diarrhea and nausea.  We explained the situation as clearly we could, and she is determined to try again.

We are born with an innate strength to survive and hang on to life as long as we can, to struggle to beat the odds for a little more time. Time to be with family and friends, time to enjoy what this world has to offer.

When I wake up in the morning, the world seems full of possibility. I sit in my favorite chair in my “snuggery” and watch the sun rise. It does so, like clockwork, and everyday we can count on it to be there . The birds awaken and the sweet morning air is filled with their cheerful song. We are surrounded by gifts too great to count, and too often we fail to express the gratitude we should have for them.

Sadly, life, the greatest gift of all, is often treated with the least amount of reverence and care and we are bombarded daily by the news of yet another war, another murder, another threat  to our lives and our well-being. It’s no wonder so many people are depressed and anxious.

I look at my mother, at 90, facing the fight of her life, for her life, with a strength I can only hope to emulate as my disease progresses. Her current battle has me looking my own mortality right in the face. I can either crumble before it, or refuse to be intimidated, and continue to find joy in the things I’ve always loved – my writing, my  photography, gardening and nature, the joy I find in this beautiful world, in the people I love and who love me  in return. Time passes too quickly not to grasp at joy and happiness while we can.

Michael J. Fox once said, “Parkinson’s disease is the gift which just keeps on taking.” With his characteristic, positive insight, he can acknowledge that even within the diagnosis of a progressive disease,there can be  found a hidden gift. In his  case the diagnosis was a wake-up call. He was, at the time, partying a little too hard, his train on the wrong track. In his book, Lucky Man, he says, “I am no longer the person described in this chapter, and I am forever grateful for that. I would never want to go back to that life – a sheltered, narrow existence fueled by fear and made livable by insulation, isolation, and self-indulgence. It was a life lived in a bubble, but bubbles, being the most fragile constructions, are easily destroyed. All it takes is a little finger.” He goes on to explain that absent this neurophysiological catastrophe, he would have never have embarked on the journey he has taken, or been so profoundly enriched. I am not yet at the point of saying I am glad I have PD, but I admit I am more conscious of the gifts I have been given, and  am grateful for them. Right now, I am grateful for the meds that keep me moving and the researchers working on finding a cure.

At some point most of us will be faced  with a serious challenge. Some of us will win, and some of us will lose, but most of us will have fought the good fight and will know when it is time to let it go. My mother is prepared to take another stab at fighting this disease. With her fortitude, I think she can make it, but I also think she’ll know when enough is enough.  I know I will have a hard time dealing with that and I ardently hope that it is much later than sooner,  In the meantime, we will make the most of our precious moments, and  express gratitude for what we have, right now.. My gift to you, this poem, on gratitude: Take some time to think about what you are most grateful for, and  tomorrow morning, when the sun rises again and the world is full of possibilities, go out and find them.

With Gratitude…

For sweeping skies of crystal blue
And mighty mountains standing tallPhoto06_1 - Copy
For the new grown green of early spring
And the brightly colored leaves of fall
For butterflies and singing birds
Morning light and summer showers
For treasured books, filled with words
A special place to read for hours
For Christmas trees and twinkling lights
For gathering with those most dear
For silent snow that frosts the night
And dreams of peace to conquer fear
For delicate flowers and a star-spangled sky
For the marvel that is our universeIMG_7633
For the sense of wonder as we try
To unravel things mysterious
For the light and warmth of the golden sun
For ocean waves that rush to shore
For spending time just having fun
with my close friends, whom I adore
For the doctors who take care of me
For my family, how I love them so
For the best of times, most certainly
and for all there is to learn and know
And all the things still left to do
I’ filled with heartfelt gratitude.
                       -pc 2012

 

Staying in Focus: Calm Amid Chaos

I had the CT scan on Monday. I’d like to know why, if they can make the contrast you have to drink for a CT scan palatable, can’t they do the same for the colonoscopy prep?  I challenge any enterprising student of medicine or research to come up with such a product. and you will be the hero of millions.  In fact, you may even save lives as more people might be willing to take the test if that prep didn’t send your taste buds running for the hills. Anyhow, I don’t have to have a colonoscopy until January, unless this CT scan shows something we’d rather not think about.  Either way, I assume the same old prep mix will be on the menu.  Along with chicken broth, popsicles, and God save me from jello So now it’s back to waiting.  Meanwhile…

I feel in the mood for a little humor, so I will share with you some creative exercises we did in poetry class this week.  They are basically putting together random words or phrases in a variety of ways from different source.

 calm within chaos

can one find calm within chaos?
I am open to the possibility
the situation is similar
to twisting out tension

perhaps it takes
a whack on the head
some begging and bribing
to get one to sit in a white plastic lawn chair
and gaze with sightless eyes
at the saintly bird-feeder

be consistent and compassionate
for failure is the name of  a song
imagine your thoughts 
are orphaned popsicle sticks
scattered like fractured bones
and let go

when the images
of a mustachioed mouse.
or balloon animal bookends
rise in your mind,  there is
calm within chaos
satisfaction guaranteed.

An Ascorbic Acid Wit

though your achievements may be
astronomical, what I associate most with you
is your ascorbic acid wit 
when accentuated, a wit capable of causing
pandemonium, which cannot be halted
the last time, it took hours to pacify
the students and  a phalanx of counselors

to  treat the amnesia you induced.
I would be deemed an idler if I failed
 to accost you, and get to the root of this matter. 
while you are free to glorify your behavior. I
 must be illiberal with my words and paint a
picture you will understand:
 Take  a pestle to that wit.
you are walking on glassine here, young man.
and  furthermore:
no more hokey pokeys in the corridors.
no more paintball in the gym.
Stop acting like  a hoodlum.
My advice: take up the accordion i

it’s all in the name

the names 
given to paints
are irresistible
to one who paints
with words,
just look at the
damage a thesaurus
can do:
hello, yellow
(salude, sunshine)

open sky
(yawning yonder)

sweet tangerine
(sentimental orange)

mystic wisdom
(preternatural perspicuity))

sweet 13
(pure in pink)

timberline
(a bucket of bark)

mariner
(aquanaut in aquamarine)

ready to paint?

 Hope you got a little chuckle out of those. I get lost in the words and imagery of poetry and it helps me to find calm within chaos. Hope it gave you something to smile about.

Staying in Focus: While you Wait, Write Poetry

I know it’s been a while since I’ve posted.  There are many things going on in my life these days, and much of it in the form of challenges to body and spirit.  Just prior to our trip to Alaska we were saddened to hear that  our son, Steven’s, marriage was in all probability over.  A separation agreement has since ensued, and I have spent many hours on the phone with Steve as he sorts through all this, sets up housekeeping for himself and tries to make this as trauma free as possible for his 2 young children, ages 6 and 3.

Upon our return from Alaska, our younger son, Kevin lost his job.  Kevin is okay, financially, and is working on some personal projects before taking another job, but I still worry about both of them.

There is a tiny silver lining in Kevin’s being home right now.  As I have had to give up driving due to the medications I take, and some of the symptoms I experience due to the Parkinson’s disease, he has been available to drive me to doctor appointments.  A few weeks ago, I had  a calcium scoring scan done, to determine if calcium had invaded my heart, in which case cholesterol medication would be warranted.   I already take so many medications , I am loath to add another if I can avoid it.  My cholesterol readings have been marginal.  So I’m trying to lose weight, improve my diet, exercise and  I take fish oil in an attempt to avoid more medication.

Well , the results are in and my calcium score was 0.  Should have been news requiring celebration except that the scan picked up two tiny nodules on my lungs.  My primary doctor was not overly concerned as these can be common and benign.  However, given my history with colon cancer, it bears the investigation.  So I moved up my scheduled visit with my oncologist and met with him last week to assess the situation. We are now awaiting the results of my CEA blood test which can detect a protein in the blood if colon cancer is present .  So far all mine have been clear.  I am also awaiting a call to tell me when they have scheduled a CT scan of my chest and abdomen for me.  I will see my doctor again on Nov. 5th.  All this waiting is what is most excruciating about dealing with doctors and diagnosis, but the information must be gathered in order to know how to proceed.

Fortunately, my guru of positive thinking, Michael J. Fox, was recently talking to Ellen DeGeneres on her show, and he said he never imagines the worst case scenario because if he does, and it happens, he will have lived it twice.  Such an insightful man.  So I’m trying to put it out of my mind.  Whatever it is, it is there, and will have to be addressed, either by monitoring or treatment.

Alerts, like these, wake us up, remind us to welcome each day our eyes open in the morning and we realize we are still here. To spend time with family and friends.  Not to let the minutiae of life distract us from the important things: to spend our time doing what we love for as long as we can.

So I’m concentrating on my poetry class.  I held the anxiety at bay yesterday by writing this poem.  It is so cathartic – it’s like the words absorb the anxiety and fear as I take them out of your head and place them on paper. The instructor gave us a list of the names of places and we had to write about our choice for five minutes then compose a poem.

Antelope Run

driving, just driving
highway blurry through unshed tears,
tears that cling to my eyes like
raindrops to a leaf
fleeing the present, fearing the future
filling the past with the images I yearn for,
from when I was young,  when I was healthy
a sign up ahead,  Antelope Run
can I outrun my fears?
without thinking, I make the turn
down a winding, twisty road,
the wind is blowing ,
whipping up waves
of tall meadow grass
that ripple in the sun
a ranch house appears,
a ship adrift in a sea of green
I pass under a weathered sign
faint letters whisper,
“Welcome to Antelope Run”
but the house is empty,  its
windows gaze with sightless eyes
at the rolling hills that surround it
the antelope have all run away
I sit on the crumbling steps
resting my head in my hands
and a song from childhood
echoes across the years
I hear my mother‘s voice, singing,
“…where the deer and the antelope play…”*
the tears begin to fall and I run and run
but not away.

* Home on the Range was originally a poem written by Dr. Brewster Higley in Kansas, in the 1870s. His friend, Daniel Kelley wrote the music, but in the twentieth century it was arranged by David W. Guion, who is often cited as the composer.  It is the state song of Kansas.  My mother would sing it to my younger brother as she rocked him to sleep.  I suppose she sang it to me, too…

I’m also being sure to spend some time in meditation each day.  I recently bought a book/CD set by Jack Kornfield called “A Lamp in the Darkness”.  There are several quotes I really like from this book:

It’s not what you planned, but this is your life. You’re still here. Listen. Something new is coming.

It doesn’t belong to only you.  It’s the dance of conditions. You can;t choose the music, but you can choose how you will dance.

This reminds me of another recent poetry assignment.  This one is called  a villanelle, and is incredibly complicated. It consists of 19 lines, made up of 5 tercets (stanzas of 3 lines) and a quatrain (the last 4 lines), but, line 1 is repeated as lines 6, 12, and 18 and Line 3 as lines 9, 15 and 18.Wait, there’s more! In the first five tercets the last word in the first and third lines must rhyme; in all the middle lines, the last word must rhyme with each other and in the quatrain the last word in lines 1,3 and 4 rhyme and line 2’s last word rhymes with all the other middle lines.  Whip it all together and it come out like this:

Relevance

Oh, why didn’t I learn to dance?
to tap, salsa, jive, ballet,
once long ago, I had a chance

somehow I missed the resonance
of waltzes, mambo, the paso-doble,
oh, why didn’t I learn to dance?

Even though I lacked the elegance
to pull off the tango or merengue
once long ago, I had a chance

To twirl and whirl in pure exuberance,
to shimmy, shag  and schottische
oh, why didn’t I learn to dance?

I must continue to advance
and find an answer, straightaway
once long ago, I had a chance

Then nothing more of relevance
will this question now convey
oh, why didn’t I learn to dance?
once long ago, I had a chance.

After my headache subsided I got into the swing of things with this villanelle.  It’s better than going crazy (I think!)This class has been such a joy.  It’s amazing how you can bond with other people over the internet.  No one needs to be alone with a computer handy.

Well, just got a call from the doctor – scan is set for Monday at 8:00 am.  Meanwhile, I wait. It’s going to be a long week!

Focus On: Smiles

    a smile is a special gift
   to share with one another
   to do so gives your day a lift
   and makes the world look kinder
   when you see your smile reflected
  on the faces of people passing by
  you’ll know they’ve been infected
  by the twinkle in their eye
  and the smiles swiftly spread
 to others through the day
 and all because you had one
 to kindly give away
          – pc 2012

The other day, while going through some photographs, I spied one of my grandson that I just adore.  And although I think he is  the cutest little boy in the world, it’s his smile that captivates me in this picture.

And I thought about how easily children share their smiles with others, and in doing so, brighten up our day.  Just because we are grown-ups now and busy doing serious things, doesn’t mean we can’t take the time to share a smile with someone we encounter as we dash about.  And smiling is infectious.  When a person passing  by flashes you a big smile, it’s difficult not to return in kind. I’m a lucky one.  Between Evelyn and Gavin, I’m surrounded by smiles that light up their faces whenever they see me.  Talk about the power of a smile.  Nothing finer!

My mother is a great example of this.  She has weathered her share of difficult times in her 89 years of life, but she is always has a smile on her face when she greets other people and everyone she meets  is immediately taken with her.  I think a big part of this is her friendly personality, and a big part of that is her smile.  It makes people feel good to be around people with a smile on their face.

This brings to mind my favorite scene in the movie City Slickers.  Billy Crystal plays the role of a man somewhat dissatisfied with his life.  His pals give him a birthday trip to herd cattle at a ranch out west.  His wife, aware of his state of mind, encourages him to go.  Needless to say, all three of the pals experience revelations about their lives as they face  many challenges.  But when Billy Crystal arrives home, and his wife greets him at the airport he says, pointing to his smile, “Look what I found.”  She asks, “Where was it?” And he replies,”In Colorado.  It’s always in the last place you look.” Funny, but so true.  Sometimes we simply don’t know where or when we lost our smile, but there are ways to find it.

If you come to a point in your life when you cannot muster a smile, you have work to do.  Meditation can help this, as Thich Nhat Hanh, Buddhist teacher and author, writes in his book, Peace is Every Step. Meditation can help, for the source of a true smile is an awakened mind. Meditation  can help us deal with matters that may be the cause of our unhappiness. Thich Nhat Hanh suggests  we practice smiling by doing so when we first wake up in the morning.  A smile, he writes, affirms our awareness and determination to live in peace and joy.  Let the singing of the birds or the slant of sunlight streaming through your window remind you to smile.

Marion Tripp,  a friend of Thich Nhat Hanh, wrote “The Dandelion Poem”, which he includes in his book, Peace is Every Step:

I have lost my smile,
but don’t worry.
The dandelion has it

As long as you can recognize that your smile is somewhere, all is not lost .Open yourself to the help and support of those around you and your smile will return.

Once you have it safely in place on your face, share it with others, and watch the happiness you spread grow and infect the rest of the world.  Who knows, maybe something as simple a s a smile can save us all. At the very least, it can save me and you!

.

Staying in Focus

I recently came across an essay I had written twenty years ago.  It was titled “Over the Hill and Proud of It.”  In the essay I examined the reality of facing forty. What was I thinking?  What was the big deal?  Now that I am looking sixty in the face, at forty I was still a youngster and quite clueless.  I ended the essay with this conclusion, “We look ahead, not back.  We hatch plans, not regrets.  The hardest part of the climb is over.  We’ve acquired confidence, we  temper life’s ups and downs with humor.  We delight in our wisdom .We’re over the hill and proud of it.  We anticipate all that lies ahead.  And it’s going to be quite a ride — remember it’s all downhill from here.”

While most of that still holds true, in retrospect, it has been the last twenty years that have included life’s greatest challenges for me and brought me a deeper wisdom.  Believe me, I still had a lot of climbing ahead of me, and those downhill rides were terrifying. There have been delights – a new daughter-in-law, two lovely grandchildren, a couple of nice houses, some great vacations, but there have been obstacles I never imagined at forty.   Most of it culminated in 2007, and although I had no idea what was in store, these silent predators  were busy plotting against me.   First of all, out of the blue,  I was hit with terrible social anxiety, which I still deal with today.  And then, in 2007, I was diagnosed with both colon cancer and Parkinson’s disease.  Talk about anticipating all  that lies ahead!  Who anticipates a freight train heading for you at 100 miles an hour?! Hopefully, I’ve got the colon cancer on the run, and the research community is hard at work on better drugs for the Parkinson’s, and perhaps, one day, a cure.  But in the meantime, I’m the one on the front lines in the battle for my life.

This blog is not meant to be about illness and meds and doctors,  or a place for me to whine and bemoan my fate,but rather about staying in focus on the here and now,  living the best life you can and keeping control of your own life.   For me, keeping it all in perspective is paramount, and my sense of humor is a major lifeline.  In addition, there are the three  ps – prose, poetry and photography.  These are my fortresses, the places I go to stay in focus..  Mix in meditation and the big E (exercise) and I am armed and ready for the fight.  You’ll be hearing a lot more about these in the weeks to come..

So, in addition to sharing my experiences with you, I wanted a place to collect my words’ present my photographs and share the crazy thoughts and perspectives that I house in my head,  but most especially to have a place to keep it all in focus.