Finding Humanity in the Hospital

 

 

The beep beep of the heart monitor in the central nurses station never turns off.  It is as if it’s the heartbeat for all of us.  Completely annoying yet a reminder that we are alive and in this together.

 

My roommate for the last three days is a 83 year old man that never leaves the bed.  Nurses clean him up after bowel movements.  His choking/flemmy cough punctuates the air.  He has sores on his back and watches Friends on TV everyday with the volume turned up.  His wife reports to the room at 730am and leaves at 9pm. They mumble to one another in a middle-eastern or eastern-European language, I can’t tell which. She tirelessly advocates for her man.  This takes the form of berating doctors, ordering nurses around and battling with her middle age sons who come to visit.

 

Any new tack their drama takes does not surprise me.  They are separated from my bed by a hanging curtain and 7 feet of space.  It is maddening.

 

I also know that they have been married for 53 years and ran a successful shoe store.  Through the blunt misery that is their existence right now seeps a love and humanity.  And a sense of living in the present.  In many ways there is more love to see here than in the antiseptic suburban sameness that we have been presented with as the “good life”.

 

I have now been here 6 days.  I came in with chest pains, which turned out to not be a heart attack.  My blood work revealed a bacterial infection called Strep Pneumoccocus.  It can be really dangerous.  They are treating me with a long round of intravenous antibiotics.  I should be back out in the world, enjoying the summer days soon.

 

What strikes me about the nurses is that that after their shifts they go back to their lives.  Then, after a period of time, the return to the hospital again.  Voluntarily.  To get berated, wipe strangers bowel movements clean, and consistently have to give bad news, take blood, and many other indignities that I don’t even know about.  They cry with families who just watched a loved one die and in the next moment have to negotiate pudding or peaches for a patients dessert, but they keep coming back.   AND …. For the most part, keep their humanity.  Their pain is easy to see.  There are many physical signs of just having been through too much.  And still they bring the humanity and compassion.  It’s amazing.

 

Having done a prison workshop two weeks ago, the contrast between those two places is fascinating.  With prison, the inmates in the workshop seemed in tip-top shape, both in terms of health and their outlook on life.  But they couldn’t leave.

 

In the hospital, the concept that you CAN leave at any time is ever present.  Whenever I have felt really down that thought of just walking out creeps in.  But I know I need to let the treatment and diagnosis happen.  So I stay.

 

Both places force INTROSPECTION.  Personal space and privacy are gone and replaced by lots of TIME.  Owning a Rolls Royce or a mansion or nothing doesn’t matter in a prison or a hospital.  We are left with ourselves.  We are left to sift through the discomfort and chaos and find our humanity.

Happy Marine Corps BDay

Been a while since I’ve posted here.  Things are going well.  We are all fighting colds. Marched in the Nyack Halloween parade. Picture below.  Had my 30th High School reunion and Transplant survivor reunion (picture below) in the past month.  Leela is turning 3 this Sunday.  Lisa is still a Warrior Goddess.  Life is happening.  Feels good to be in life as opposed to looking at it through the window like last year.

How to cherish it though, that is the question.  How to live totally on purpose.  I have some ideas.  I am polishing some things up that will be ready for public use soon.  So in the mean time the thought is the same.  Be awake.  Be aware.  Be the positive vibes we would like to take in from the world.  Then we are on the path.

The Queen of Hearts and Daddy and Baby Panda marching up Broadway

Amy (had transplant one week after me), Me, Dr Castro, and Peter, a 23 year survivor of Aplastic Anemia who keynoted the reunion

Anniversary of Miracle on the Mountain

A week after the somber anniversary of Sept 11th we have another, more uplifting one to mark.  One year ago today Mary Alice picked up Leela and I and took us for a drive,  here is MA’s version of what transpired:

Go tell it on the mountain

Tuesday- I spent the day with Leela and offered Tom a change of scene if he felt up to a ride in the afternoon.  Tom called at 1 and Leela popped up like a piece of toast from the ‘pink bed’ where I was trying to put her down for a nap.  Like Goldilocks, Leela bounces from bed to bed at naptime till she finds the one that is just right.  She said ‘blue bed’ and off we went to try and nap in another room.  I tucked her in, read her ‘ The Song of the Day Birds and the Night Birds’ 3 or 30 times before she pointed to the door and said ‘close the door.’  Obediently, as always with anyone who carries 1/10th of my body weight I closed the door and went downstairs to mop my floors.   About an hour later she called down “Cuckoo, come up here” – I did as commanded and she popped up again and said “get up now” and so we put on our shoes and went to pick up Daddy.

Tom–you had no spark that day; when I talked to you it was like dropping pennies in a well.  As we drove up the parkway I remembered what it was like to have no spark, I wanted to take you someplace that might shift your perspective so I took you up Perkins Drive at Bear Mountain.  It is a holy place–my granddaughter bursts into spontaneous choruses of America the Beautiful when we drive up–and  over the years I have taken friends from other states whose visions of New York are the 5 boroughs, Long Island and Buffalo.  They are ready to drop to their knees as they look over the Hudson River to the mountains beyond, shifting from greens to gray to violet with the ghost of Manhattan more a mirage than an image in the far distance.

We drove up the long drive and parked the car.  I asked if you felt up for a walk out on the rocks (from the lot you can not see much more than bald rock, grasses and trees), you said yes–but your eyes still reflected the flat black, pinpoint pupils of someone in the dark place.  I took Leela’s hand as we stepped out to the rock and it was only when we had walked out to the first ledge that the true magnificence of the valley below was visible.  I waited for your breath of ‘ah’, for your pupils to open, for the shadow to move, but before the magic happened we saw the backs of 2 women and one man on the ledge below us.  They spun around to face us and called out in Louis Armstrong, fire and brimstone voices “Raise up your arms, raise them up” and in shock we did, even Leela.  There was man carrying a long twisted ram’s horn  with flags hanging off it and 2 colorfully dressed women waving thick, heavy, well thumbed bibles in our direction.   I passed a sidelong glance your way wanting to follow your lead, I am usually game for any experience but this day was about you.  You stood there arms raised as though you were being held up at gunpoint; your eyes closed as they yelled out in earthshaking voices.

“There are no coincidences in the world, we are here to heal YOU;” and they pointed their hands at you Tom, right at you. “The cancer will leave your body,” the woman in bright yellow called pointing her bible filled hand at you.  The man blew the horn – echoing blasts.  “Go to your doctor tomorrow and he will tell you that you are healed.” (I was briefly and selfishly disappointed because I had a kick ass case of poison ivy and she didn’t mention me at all.)  She turned to man and called out; ‘Read us some scripture” and he obliged with words that blew off in the wind.

There were people on the rocks behind us who could not see the strange group below us–they only saw us with our arms raised; you, by then, with tears streaming down your face, eyes shut tight; and me misty with empathy.  One man caught my eye and raised his brows in wonder.  Leela, little arms raised kept her composure as the bystanders heard the voices praising Jesus and the bellowing of the ram’s horn, audible, yet invisible.  The 3 then climbed up the rocks to you, one waving a bottle of oil in your face wanting to anoint you the as the others reached over to lay hands on you.  We begged them to please not touch you; the man said to the two women, “They don’t understand this is Jesus healing” while the yellow woman asked, “Do you got to church?”   “This is church.” was your reply.  “You will see your little girl grow up to be a woman” she said as the one with the oil broke role as healer for a minute and said as she held out the bottle, “see, it’s just olive oil.”  You thanked them and sent them on their way.

As they receded you turned to me and said “Nice set up M.A.” – I said “Tom, you can’t make stuff like this up.”  You said, “It was olive oil, Bertolli, not even organic,” and we both laughed, self consciously, like we were caught in a shared dream.  “Holy Bertolli.”  We were pretty quiet on the way home.

There was a miracle on the mountain for me that day, many miracles in fact.  To be standing in September’s sunlit splendor on a mountaintop knowing that what I was looking at that moment is what will endure–not our troubles which will pass as surely as we will pass.  It is the earth that will remain, whole and green and beautiful.

To be there with you Tom–you, who could easily not be there except for the many other miracles that diagnosed and saved you.  For the courage of the three believers testifying their absolute faith in their vision of the divine on your behalf; it doesn’t matter what we believe, only that we do believe.  How do we explain their timing, coincidence, the divine plan, chaos or chance?  How did they know you were sick?  There are a lot of skinny bald guys on earth.  (Ok, it’s not cancer.  It’s aplastic anemia- who knows what that is in the general public?  Aplastic anemia sounds like something a 10 year old in 1964 would have on their Christmas list along with a Slinky.)  And Tom, what did the Dr. say when you went the next day?

I will push a button on this silver box sitting on the table in front of me and these words will pass through the ether and wind up on little boxes in front of you and other people.

The sun is coming up. Everything is a miracle.

–Mary Alice Hohenberger, September 19, 2010

First Birthday of new immune system

Big day today.  First Birthday of new immune system.  Lisa and I went to Sloan Kettering for a year checkup.  All went well.  Lisa baked two Vegan Carrot cakes for the nurses in the Clinic and the 8th floor crew.  When we went up to the 8th floor I realized that as much time as I spent there last summer, I had never walked onto or off the 8th floor on my own two feet.  Being around that atmosphere was pretty emotional for us.

Want to thank my sister Joanne,  pictured to the left in the hospital room last year while the marrow drips into my arm.  I love her and owe her endless gratitude.

This whole ordeal has energized her tremendously.  Those of you who know her are aware of how much of a force she has always been.  Well… something has even been magnified.  Its like she has become more aligned, or tuned in, or something.  Go get em Joanne!

August 4, 2011

Here is a picture of my two biggest heroes on the ground this past year. Dr. Hugo Castro- Malaspina is the head of the best bone-marrow center in the world at Sloan Kettering. We were lucky to get steered to him and lucky to be in his care for the past year. He is a total LEGEND!

And the gorgeous, radiant woman to the right is my incredible bride Lisa. She has been an inspiration and rock for me during this entire adventure. While caring for every last detail of my recovery and being the most open-hearted and loving partner I can ever imagine….. she has kept her business fire shining as bright as ever AND been the ideal mom for one of the supernova’s of the toddler world LEELA. I love you and cherish you Lisa.

What a difference a year makes

A year ago today I said bye to Leela, and Lisa and I drove to the hospital to begin the process of getting well.  I couldn’t really get my head around spending 6 weeks in a single room so we basically only looked ahead in shorter time periods.  With no guarantee that the transplant would even work, there was no point in thinking ahead much.  So we didn’t.

Well, a year later, the transplant seems to have worked.  I feel good.  I have been slowly getting strength back in my body.  If you saw me in the first few months after the hospital, I was rail thin and I had what I termed “hospital posture”.  Hunched and protective.  That has changed.  I started taking Tai Chi classes twice a week.  It is fantastic.  Great for posture, strength, and energy.

There is also movement all around.  My wife Lisa, after months upon months of unbelievable service, sacrifice, and wearing too many hats in our family;  is getting back into a rhythm of self care and visioning her professional future.. I am figuring out how to spread my gratitude and payback of the karmic debt to her over the rest of our lives.

Leela has started school three times a week and is thriving.

My sister Joanne has become a workout fiend and is getting into the best shape of her life.  And the program she has been taking for months is more about how you are in the world than about how you appear in the world.

The brave Men who have been attending my two ongoing Men’s circles are doing incredible work.  The type of work that is the antidote to all the gloom and doom we hear about in the news.

So with growth, inspiration, and movement happening all around us, this is a great time to be out in the world.

So, I celebrate my freedom today with a quote from the great Jewish scholar Hillel:

“If I am not for myself, then who will be for me? And if I am only for myself, then what am I? And if not now, when?”

Year ago today

We are coming up on all the anniversaries.  Today is the day one year ago when we got the call from the Dr. in the middle of the night telling me to go to the emergency room.  Which I did, and didn’t come out til 2 days later knowing I needed a bone-marrow transplant.  It has been an incredible year.

My latest Dr. visit was Thursday.  My whites reds and platelets were up and all markers were on target.  Except for a highly elevated cyclosporene level, which I had to go in Monday and get retested (turned out to be a lab error a little scary though), everything looks good so far.  I feel healthy.  Still not gaining much weight.

Had a pre Fathers Day Men’s workshop on Saturday that went great.

Lisa and Leela and I are driving (still not allowed to fly) to Michigan today to see Lisa’s family.  We are going via Cooperstown (to stay with the Weldon’s) and Niagra Falls.  Should be a great adventure.

Leela starts part time nursery school when we get back.  Thanks to her new sitter of the last few months Rose, Leela can count to 20…..in spanish.  She is ready to rock and roll.

Best to everyone and breathe deeply today.

Love,

Tom

 

 

 

Just saw this on Facebook

” ‘It’s impossible’, said Pride.
‘It’s risky’, said Experience.
‘It’s pointless’, said Reason.
‘Give it a try’, whispered the Heart.”

–unknown

Monday morning quarterbacking- Rapture Edition

Rapture weekend came and went.  Heard a lot of chatter from all angles as I’m sure all of us did.

Hit me this morning when I was talking to Lisa that beneath all the fear, judgment, and ridicule that spun out of this non event, the most obvious truth continued to get short shrift.  That is that we all want to live a compassionate, caring, enjoyable, real life.  Feeling our feelings, having truthful interactions with others.

The jewel of all religions is this most basic want.

Three people enter a crowded room.  the first one is spouting the rapture story, the next one is bringing a message that there is no God and that the rapture stuff needs to be debunked and the third is living by the tenets of the “golden rule” we were all told as kids.   Which one has the potential to spread the most compassion, caring, enjoyment around that room?

I usually don’t footnote my posts but when you have Jesus, Hammurabi, Confucius, the Bhagavad-Gita, Muhammad and others making the case you are in good company.

http://en.wikipedia.org/wiki/The_Golden_Rule

Out of Suffering…Beauty

We have noticed a lot of suffering happening.  On a global level and on a local, more immediate level.  Lots of people facing real problems and challenges.  People going through all manner of new, inexplicable tests of their faith and resolve.  Sometimes it seems like we all are either suffering or helping out someone out someone else who is suffering.  Almost has an all hands on deck kind of feel to it sometimes.  Like the Great Spirit (God, Universe, etc.) is tapping us on the shoulder saying, “Hey!, pay attention.  This is the real deal”.

The following poem was written by a man named Trent Sheehan.  He has a little girl with Aplastic Anemia.  From his heart he brings a really important message to us all in these times of suffering and challenge.

One Eye On Eternity

The coffee machine gurgles,

Smelling like consciousness,

Bitter, pungent, yet somehow appealing.

I wait, with one eye on eternity

And one eye on my coffee.

~

Rosy cheeked girls, who need no coffee

For their consciousness,

Cry out for cartoons and peanut butter sandwiches.

I shuffle to the kitchen with one eye on eternity

And one eye on the peanut butter.

~

Frenzy of shoes, clothes;

Wash your face, there’s peanut butter on it.

We have to go hit the road,

With one eye on eternity

And one eye on the interstate.

~

Familiar roads, grown automatic with repetition.

Sign in, hold her arms with grim set-jawed determination

As blood is drained, or added,

With one eye on eternity

And one eye on the doctor.

~

Evening, and a quiet hour

Winding down as thought replaces action

Searching for some prayer that feels real

With one eye on eternity

And one eye turned inward

~

Stop.

Watch her glow

At some tiny pleasure.

Hold her close and feel her tiny heart.

Breathe her in

With both eyes on her smile,

Because eternity can wait.

~

By Trent Sheehan

Happiness

Spring is in the air this Sunday morning in the Northeast.  Easter is one week away, the buds on the trees are just beginning to come alive.  It is a magical time of year.  A time of year that is full of hope, freshness, new earnestness.

It is also exactly when my health started to fade last year.  Started with some bruising, then progressed to not being able to run as far as hard as normal, then got steadily worse til I ended up in the ER with very few blood cells.

So this time around spring has a different feel.  For me it is more personal and internal.

In past springs the prevailing feeling was external.  Lighter jackets, days are getting longer, March Madness, the Masters and baseball in the air, outdoor cafe with friends:  all signs that a new cycle was upon us.  Almost a feeling, throughout the winter, that if spring just comes, what ever was getting me down or lacking in my life throughout the winter will be wiped clean.  And most of the time we do feel better.  Spring usually delivers.  We plan outings, social events, vacations and  fill up our weekends with all kinds of wonderful transporting experiences.

Then we are happy!  Fulfilled and at peace…….   Really?  Is this how it works?

One of the main nuggets of wisdom that I have gleaned over the past year is this:  Happiness is not dependent on external forces.

Simply saying “happiness must come from within”, or “don’t worry, be happy” or “just act happy” doesn’t seems to cut it either.  The Secret isn’t to fake it.

Something more is in action.  Maybe something closer to;  Happiness is consistently getting your own needs met. 

How?

Spend some serious time figuring out what you really want.  Then don’t be afraid to say that you want it.

When you speak, say what is true for you right then.  Pick being true over being nice.

When faced with any situation, ponder how you can act and maneuver and be.  Not on what is happening “to you”.  A traffic jam was not put there to specifically make you angry.  It’s just there.

In general, the more we take responsibility for steering our own ship and Leading Our Own Life, the less our happiness is dependent on outside forces.

So when you walk out into the gorgeous spring day.  Breath it in deeply with gratitude and think of it as a BONUS.

Love and happiness,

Tom