Tag Archives: life

June 10, 2011 · 10:05 am

Remembering My Big Brother

As you get older, months take on different significance.  Months that used to be filled with birthdays, anniversaries and graduations now harbor dates where someone you love learned he was dying and months where father, brother, mother, died.

June is one of those months for me.  My brother Mike learned he would die of a brain tumor in June.  I think he suspected that he was dying but the doctors confirmed it on June 11th, 2007.  I spent the next 2 weeks living in Virginia, fighting for tests, for hope, because my sister-in-law could not.  She was in shock; she was  losing her husband of 43 years.  But there was to be no reprieve.

Every weekend for 8 weeks, my husband and I drove to Roanoke on Thursday evening or Friday morning and stayed with Mike and his wife.  We brought wine, and steaks, pies, homemade chocolates and our love.   Days and nights were spent holding his hand, talking, laughing, watching his favorite movies, listening to his favorite music, his only music — classical.

Poignant moments came at odd times like when he stood in his hall, looking at his CD collection and said, “No one will want my music when I die.”  Or the time he looked up and me and said, “Why my words?  Why is this tumor taking away my words?”

How do you answer questions like that?  I answered by taking his hand, holding it, telling him I loved him and slowly, slowly moving him back toward living and away from the edge of his own death.

During those last weeks, he and I completed his last project together – putting the rails on the stairs to his front deck.  Sounds like a simple job but it wasn’t.

Mike couldn’t calculate anymore.  My genius, electrical engineer, computer programming wunderkind brother could no longer do math.  I never could.  But for 8 hours, on a Wednesday, he and I struggled to space the spindles on the last remaining stairwell on the deck.  And we did it exactly correctly.

Oh I tried to do it easy – just aligning them with the spindles on the other side but Mike had lost his math skills, not his personal power.  So, slowly, carefully, dividing to a 13th of an inch, he and I put those spindles in place.  And when we were done, we sat on his glider, on his newly finished deck, poured the last of his 21-year-old Scotch and drank to each other, to the deck and to the day.

Michael died on August 8th, just 9 weeks after he received his death sentence – malignant astrocytoma – brain tumor.  But he lives on, those days and weeks live on, memories, celebrations to a life well and truly lived.

It is June and I celebrate you Mike.

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May 29, 2011 · 6:00 am

Speaking of Strokes & Life

When Jill Bolte Taylor speaks, a whole lot of people listen.

She is a phenomenal speaker.  She strides on stage, no notes, no teleprompter and for 70 minutes, holds the attention of the  audience.  Animated, funny, and so crystal clear when talking about neuroscience and our brains that I get it,

Dr. Taylor is a joy to listen to.  She should be difficult to understand, a Harvard trained neuro anatomist, a pointy-headed intellectual with credentials that would make most of us take a step back.  Instead, she is someone who draws people in, makes them laugh and opens up her world and her life to us.

Her rise to fame has been quick; her journey to get there was incredibly difficult and long.

In 1996, Dr. Taylor,  had a massive stroke.  This brilliant scientist was so disabled that she could not walk, talk, read, write or recall any of her life.  Putting on shoes and socks became a challenge.  Figuring out why 1 + 1 equaled 2 took her years.  All linear processing was gone. For many, this would have been the end; for Dr. Taylor, it was the beginning of an amazing transformation.

All in all, it was 8 years before Dr. Taylor could reclaim her life, herself.  But in returning to her life as a neuro anatomist, she brought something else with her.  This left-brain scientist was now totally, completely in touch with her right brain.

During her now famous TED Talk, Dr.Taylor describes the two halves of her brain warring for her attention – left brain screaming, “…hey, you’re having a stroke.”  Right brain saying, “Hey, wow, we are perfect, we are whole and we are beautiful.  And we’re all connected.”

Jill Bolte Taylor is a medical phenomenon because she defied the common diagnoses that says you only have 3 months, 6 months 12 months to recover functions like speech and walking.  She is also a phenomenon because she returned to her life changed by the spiritual experience of connecting with her right brain.  Scientist and artist live together inside her now.

She is among Time Magazine’s 2008 top 100 most influential people in the world.  Also appearing as  a guest on the Oprah Winfrey Soul Series and on Charlie Rose’s show, Dr. Taylor’s life caught the attention of Hollywood mega-director, Ron Howard who is making a movie based on her book, My Stroke of Insight.

Spend 18 minutes with her on TED and if you get a chance, read her book or see her speak or do both.   Or just answer her question:  You are the life force power of the universe; how will you spend your energy today?

 

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May 24, 2011 · 7:53 am

How Does Healing Work?

Don’t you wish that you knew the answer to that question?  Or just a bit of the answer?

I know I do.  I am healing.  This I know for sure.  What I don’t know is exactly how it is happening.

My medical team says I have Post Traumatic Stress Syndrome (PTSS) and…oddly enough, whiplash.  Both are being treated but not by traditional, Western medicine.  No prescriptions have been written for mood elevators or muscle relaxers.  Instead, the prescription has been a combination of:

  1. Osteopathic manipulation
  2. Psycho-therapy
  3. Mind-Body healing

Woven into these three practices are homework assignments.

When Dr. Gajdos said go forth and journal, it didn’t sound like a big deal.  But over the course of writing 3 pages, long hand, every day, discoveries occur, insights reveal themselves.  Reasons for behaviors become clearer and paths to changing the behaviors stretch out before you.

Dr. Gajdos also asked me to read  A Year To Live .  It’s a small book written by a man whose life has been spent counseling dying people.  Steve Levine’s advice is to work on dying, right now, seems depressing but working through anger, sorrow and pain, now, is freeing me up to live in the present moment.

Reading Being Peace came from Dr. Torregiani. Thich Nhat Hanh is an author whose writings are not easy but whose messages are clear and powerful.  His teaching is that of most Buddhist monks – the here and now – the present moment are all we have.  It is the way he shares his message that makes it easier to understand, easier to practice.

Reading myself came from Jodi Hutchinson.  Jodi is a highly trained Physician’s Assistant, at least she was.  She worked for one of the top Cardiologists in Delaware and was his “right hand man.”  When the Cardiology team from Christiana Care traveled to China and other Asian countries, Jodi began a journey of her own.  Her journey has led her to healing with her hands and her heart.

Learning to settle inside your own life, your own soul, your own skin, facing your fears, walking through your pain to the other side, to the light.  That is what all these activities are designed to do.  What’s beautiful about them is they don’t require new running shoes or spandex shorts.  All they require is desire.  And these activities are working for me, healing me, making it possible for the slow, sure stitching back together of my soul to happen.  To my team I say, “Namaste.”

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May 9, 2011 · 8:22 am

Life & Death & Life Again

Here it is.  I am still alive.  I brushed up against death in March…and again in April.

I almost lost my sister to medical error; I almost lost myself to another man’s attempted suicide.

Damage done, you say.  Move on.  But getting out of bed in the morning, putting one foot in front of the other,  that’s not living.  That’s just moving on.  So where do you go when everywhere you look you see the world as described by Joseph Campbell — loss…loss…loss?

Millions of people do it…but I won’t take a pill to make me “feel better.”  Why?  The pill masks what’s really broken, what’s really causing the pain.  I can bury my feelings like many others do but they will still be there, will burst forth at the worst possible time, will eat away at who I am and what I really do love about this world we live in.  So no pills.

What I will do — what I am doing — is take advantage of the very generous offer of my auto (and house) insurance company, Encompass.

Who would have thought that someone trying to commit suicide on your car is covered?  Not only does this company cover it but they hire warm, compassionate people to help you through whatever your particular accident was, real people who genuinely cared that I was being torn apart by the sound of a body hitting my car, crashing through glass, bouncing off the fender, rolling to the ground.  Hearing and seeing that sequence over and over and over again.

Encompass offered me some help.  They are paying for me to see a therapist.  Not just any therapists though.  And this is the hard part.  I had to find a therapist I couldn’t outsmart, out talk or out manage.  That may not sound too hard but trust me, it is.  If you have lived a few years (63) and you are pretty smart, pretty well-read and well-educated (thank you UCF and Villanova), you can get pretty good at dodging whatever it is that is dogging you.

So enter Dr. Kathleen Curzie Gajdos.  Quiet in a way that is impressive, gentle but pushy, demanding that I reach, stretch, open and feel all of it, everything that is changing my spiritual shape from a sphere to a triangle, trapezoid, rhomboid, pulling me out into corners that are dark and feel safe but are not.  She uses dream analysis (Jungian), color therapy, even a sand box where you create whatever you feel inside.  But mostly she uses her inquisitive nature, her years and years of experience and her sheer humanity to help you back to center and away from those small, dark places.

I have seen death but I am coming to life again,  Different, stronger even, but alive, nonetheless thanks to this magical healer and to an insurance company that still believes in helping you in your time of trouble.

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April 15, 2011 · 7:55 am

Finding Heroes In Hospitals

Six weeks in hell in a hospital with my sister has taught me many things but one of the most important is who really are the heroes.

Are they the surgeon? The cardiologists? The specialists who swoop in, make their cuts and move on?

In some cases, yes, but there are many more heroes who travel the halls of today’s hospitals, many of them unnoticed by administration or management but it is these heroes I want to say thank you to.

There was the housekeeper who found me collapsed, in tears, watching transport wheel my sister’s gurney off to the OR. Without a thought, she dropped her mop and wrapped her arms around me, held me, told me it would be okay. A hero, a human being who touched my soul for a few moments and gave me comfort.

There was the nurse who watched me watch you, who listened to me and started slowly, bravely and repeatedly pushing the Resident, asking for tests and finally telling him that my sister was in full renal failure. A man who risked his career for my sister, him I will not forget.

The housekeeper who stopped what she was doing and walked me to the cabinet to get a warm blanket, the nurse who pushed away from the computer and came down the hall with me to soothe my sister’s pain, the security guards who welcomed me, smiled and said good morning, the cashiers in the cafeteria who always asked how I was doing and how my sister was doing — all of them are heroes, the underpinnings of the hospital that make the work of the technicians – read doctors – possible.

These are my heroes, men and women who come to work every day and see sorrow, pain, loss, played out in every corridor and every room and still they reach out to touch, to help, to care.  These are people I will not soon forget and will never be able to thank.

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March 15, 2011 · 6:46 am

In Love, With Cancer

It always starts the same way…a phone call, a finding, “We’re hopeful that…”

Cancer has been my constant companion for more than 10 years now.  It tapped my husband first and took me to my knees as the hours, days, weeks passed.  He survived but at a series of terrible prices which I will share over the coming weeks and months.

Four years ago, my oldest brother was diagnosed with a malignant cytoma in his brain.  The Cyber-Knife showed a sister tumor and they sewed him up.  He died in two months.

Last May, my brother Bob had a cerebral hemorrhage brought on by a large, malignant tumor in his brain.  He died in two weeks.

Today, right now, my older and dearer sister is battling for her life, a 25 centimeter ovarian tumor taking over her abdomen and her every conscious moment.  She is in an ICU, on a vent and still has another surgery to go.

With each of them, I have suspended my life, shut it down to the 10 foot by 12 foot white prison cell called a hospital room.  Watching, caring, calling out what I see and demanding attention when it was needed.  Day after day, and in many cases all through the night, I have lived with them, breathed for them, watched them, prayed for them and advocated, always advocated for them.

Everything else fades away and life narrows to the hospital bed, the pinpoint that demands all your attention.  You are tired to the bone and still you stay, you watch, you help, you cry.  You ache in your joints and in your heart and still, you stay, soothing, calming, trying to reassure.  You forget what day it is, when you last ate, what a hot cup of tea tastes like, what it’s like to lie down in a bed to sleep instead of a chair and still, you stay.

That’s what it means to be in love…with cancer.

Heading back to the hospital to hold her hand, tell her where she is, what is happening and what will happen next.  I will write more about this, about the nurses who are heroes every day and about the good, the bad and the ugly of health care and hospitals.

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March 1, 2011 · 7:19 am

Five Steps For Saving The World

Changing the world, that’s what I thought I would do when I was young.  It was the 60’s after all.  We, the young people of the United States, broke the back of the Vietnam War and brought our brothers and fathers home.

We looked at a world of inequality — a country where people of color had to use separate facilities and had no opportunity and a country where a woman couldn’t get a credit card, a car or even an apartment in her own name without a co-signer and decided to fight.  We marched on Washington and won equal rights for all, regardless of race, religion or sex.

We really thought that we could make a difference.  Then we got married, had babies, went to work and stopped fighting for causes.  Oh sure, we wrote checks; I still do but I’m not rich–I’m unemployed.  So the money being sent to organizations like the  Nature Conservancy, National Wildlife Federation, Sierra Club, Audubon Society just doesn’t seem like very much.  In fact, in light of all the ecological problems this island, Earth, is facing, it seems downright pitiful

Stuck in the circular thinking of I can’t solve all the problems so why bother, I was left wondering just how can one person make a difference?

Then a card arrived in the mail.  It was a small, nondescript card from an organization unknown to me and asking for a donation.  And although I don’t have much money, I sent them a donation the same day I opened their envelope.  Why?

They answered my question.

The Ocean Conservancy asked for $18.00 if I could spare it.  In return, they offered me five small steps — steps that one person could take and, literally, start a “sea change.”

  1. Don’t pour harsh chemicals down the drain or into storm sewers.  The only end up in the drinking water down stream.  DO seal and wrap them in the original containers and call your city or county waste center for disposal instructions.
  2. Don’t litter or throw trash in streams, on the shoreline or in the ocean. DO volunteer to help rid our seas of the trash that can kill or entangle marine wildlife.  Volunteer for the Ocean Conservancy’s coastal clean up by calling 1-800-262-BEACH.
  3. Don’t use commercial cleaners – products that contain bleach and ammonia.  Substitute the ones our grandparents used, like white vinegar, baking soda and borax.  They clean as well and cause much less damage.
  4. Don’t drop your boat into the water and drive out into the lake or the ocean with loose debris or packaging that could blow off the deck.  DO look for and dispose of anything that could drop overboard before setting sail.
  5. Don’t keep flushing thousands of gallons of usable water down  your toilet.  Do fill a plastic water bottle with water and place it in your tank.  You could save up to 5,000 gallons of water every year.

Everyone can do every one of these things.  Not one of them costs anything to do. If you are living on this planet and enjoying this diverse community we call the world, you can join people from all walks of life and make a difference.

Thank you to that person, toiling somewhere in the offices of the Ocean Conservancy, who like me probably thought that one day he, she, I, we could save the world.   Because he or she reminded me, we can.

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January 28, 2011 · 8:11 am

Where’s The Book on Getting Old?

Growing old is a little like childbirth; everybody talks about it but no one prepares you for what it really means.

There is no book.  There is no one who can tell you what it will be like to watch the stars in your universe go out, one by one.  There is no one who can tell you what it’s like to survive mother, father, brother, sister.

You think about your own health and worry that this ache or that pain won’t get so bad you can’t handle it.You muse on death — yours mostly. What will it be like?  Will I be gracious?  Scared?  Bitchy?  But you don’t think about who will die and how you will live through it.

Chronology says it will be your grandparents first then your parents.   Intellectually, that can dull the prospect of their loss but still, it does not prepare you for their actual deaths.  Pain, sorrow and regret travel with you through the days of their illness, death and “final disposition.”  But, as the saying goes, they were old; it was expected.

What happens when chronology fails you?  When the unthinkable happens?  When one brother dies, slowly  and another one, suddenly?

A loss too big to contemplate and then it is a reality — debilitating — knocking me off my slats.  Both had brain tumors.  Mike died in two months; Bob died in 2 weeks.  I died a little with each one and losing them causes me pain every day.

How do you manage it when a loved one’s light flickers then goes out?  Drinking doesn’t help.  Overeating is not something that appeals to me and frankly, shopping has never been a way for me to deflect reality.  Reading helps and so do movies but the reality of losing both of my brothers, facing the loss of my sister and possibly surviving my husband, daughter, grandchildren sits dead center on my chest every minute of every hour of every day.  I want to shake it but don’t know how.

That’s the book that still needs writing.  Death and Dying for Dummies – any takers?

Happier days, before they left for darkling plains

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