She's Not There

Finola and Howard

The music of the Santana song "she's not there" echoes from the dining room. It brings back memories of my teenage years in my home, this house, in Dublin. I really liked that song as a teenager. My mother is playing it on the battered CD player. That is the same CD player that I took back to the Power City store a few weeks ago to junk so I could get a newer one for my aging parents. That was a big mistake. After I triumphantly brought home the new CD player my father kept asking what had happened to the old one.

Later after I left the country, he became so agitated and upset that my mother had to drive to the store, explain the situation and in the pouring rain, retrieve the old player out of the garbage at the rear of the store. My father finally calmed down.  

He has dementia. He likes his routine. Even though -as the dementia progresses- he has forgotten how to work the machine, and broken the tape player. He likes the familiarity of the thing. He needs it. He likes the familiarity of my mother too, even though frequently during the day, I suspect he does not know who she is. His favorite question is... "So who's here now?" I understand. It's my cue to say "well, there's me, your son John; there's mum; and that's it". Even this simple reply is problematic. The day before I arrived back in Dublin I had phoned the house and he had answered:

-"Hola" (he always says it in Spanish)

- "Hi dad, it's John calling from New York" 

-"Hiiiii..where are you?"

- "I'm in New York, is mum there?" 

- "Mum's dead" (my heart skips a beat)

- "Emmmmm.....(thinking)...who's there?"

Then she picked up the phone. I guess he was thinking of his mum. My mother(his wife)is Finola. Maybe I should have said her name instead?

I walk back into the dining room and sit beside him on the couch. He is staring into space...he turns to me looking confused. "Are there two Finolas?" he asks. I scramble to give the right reply. This is what happens; you quickly try to work out how you can safely word a response that can be understood. A response that won't hurt or confuse him. "Well" I say, "you might think there are two Finolas". I point to a picture of mum as a young woman, beautiful and raven-haired. "That's Finola when she was young". "Yes, yes that's her I know that". "Well she has gotten older since that picture was taken so she does not look the same, so in a way maybe there are two Finolas". 

Is this reply good, is this reply bad? I don't know. "So who's the big lady?" "That's mum, Finola, she's older now". " Oh.." He looks absolutely unconvinced. But I am so happy I can spend this time with him. I say to him, "dad, whatever you do, don't call her big! She'll get upset" We both laugh a lot at that. Then he smiles. I know his mind is fading away.

And I know for him sometimes, my mum, his wife -she's not there.

Now What?

I'm back. I'm back touching the concrete of New York City streets. Before I left Centrafrique I told Janel my nurse colleague to touch the African ground with her hands..." it is something you will remember after you come back " I told her. I did the same myself. Such a simple thing you think, but actually powerful. Try it some time wherever you may be.
The beauty and pain and sadness and joy I experienced in Africa obviously has its parallels here in my city home. I worry that I will not find such dramatic, exotic and obvious examples of our frailty, ferocity and love here( OK, I know this is New York, all I have to do is walk up to the Port Authority bus station and voila!). But the stories I read in Africa often seemed to write themselves in front of me, I only had to recount the details to others. Now I stand on the edge of new actions and new directions closer to my friends and family. I may have to search just a little more to find the stories that stir me. Stories that chronicle the absurdness of the human condition yet touch the essential within us that makes us feel -despite all evidence to the contrary -that we are beautiful and eternal.

four days old

You always hear the children crying first and we usually start rounds in the
pediatric ward. Frankly we triage with a bias towards the children, because
it is often they who will succumb to malaria or other infections in this
place, in these times. 'Succumb' of course is a picturesque way of saying
"die". As we discuss events at the end of the day at the base I will sometimes
launch into my latest humor offensive, directed against these 'spoilt
children' who tend to demand all the attention. They get carried around on
people's backs all day long. They get fed a lot on demand. They occasionally
appear cute and playful(probably a ploy to trap us into liking them). They
inspire stupid smiling faces and gurgles from adults who should know
better(that's me). They often sneakily pretend to be helpless!
Beneath my dubious sense of humor lie other, quieter realities.
These are the beautiful old people who also arrive at our hospital
regularly. They are often stooped and crooked, sometimes dying, their
complaints as such perhaps not given the weight they might deserve. They
don't merit quite the same attention, they don't often squeal or cry. These
men and women arrive quietly and look at you with a calmness or a
resignation or a detachedness that seems to ask; "do I also matter, to you?"
Do they?
These are the survivors of a harsh life, walking or being carried in for
help. They have clouded eyes, pain, urinary retention, cancerous growths and
thin wrinkled skin. I sometimes ponder are they victims or victors?
Emergency medical organizations like ours are not ideally set up to handle
these old souls, in this place in these times.
The things these survivors could probably share with me. Those 'spoilt'
babies have no idea. I, have no idea.

An old man comes in with a distended abdomen; it looks like a small cantaloupe down there. It is his bladder, swollen and painful from urinary retention. We ask how long has this problem been going on? "about four days" he says. Maybe, but probably not I think. Swollen joints, end-stage
tuberculosis, HIV wasting, tumors, gangrene and festering wounds; when
asked, the patient will often tell you he or she has suffered from it for
"about four days".
And really, why think back any further?
I smile softly as these thoughts flow through my mind.
Everybody somebody's baby.
Four days old.
More later
John B Fiddler ANP

Rain

Patients wait outside the hospital ward- Zemio, Central African Republic 2011

The rainy season we think, has started finally. It is not like you imagine.
The earth is thirsty and greedy when it rains, initially there are torrents
of water rushing along the roads and gushing down the hills. But soon after
the deluge the earth becomes quiet and damp. Most of the water has been
swallowed below. Then the sun comes out.
A father has travelled 400 km to our hospital with his young daughter. She
has a huge tumor on the right side of her face, distorting the jaw and the
cheek. Eating and swallowing is difficult.
We think we know what it is, a type of lymphoma that is known to occur in
children in this part of the world. It has a suspected relationship with
repeated infections of falciparum malaria, the type of malaria we see in 96%
of the patients who are diagnosed here in the Central African Republic.
There is nothing much we can do right now for her, except send an email to
the capital medical team to see if there may be a chance of a chance to
treat her. You note how I word that sentence, I think the odds are not good.
The medical care in the capital, Bangui, is not much better than it is here.
I don't know what will happen to her. Frankly her future without state of
the art chemotherapy is dim. Another possibly dim future in a vindictive
land that is always thirsty for change.
But all is not so hopeless that you drown in perpetual frustration here.
Every day I tour the ward and see children pulled back from the brink. Most
of the sick children who arrive here with malaria, will stabilize and then
after a couple of days of treatment they will smile again, and you know that
a small battle is won. And almost every day children smile. As we tour the
small hospital we touch and hold hands. We try to impart what we can to
friends and relatives of the ill. We laugh, occasionally with a barely
submerged sadness. We try to accept the fact that we cannot change
everything and we continue in our own crazy, rural, isolated African
medical-centre in the rainy season way... to seek the courage and the wisdom
to change the things we can.

More later
John B Fiddler ANP

Thoughts on leaving again

I lie here looking out at the tree
Saturated in a rising morning sun
A light blue sky
I'm in New York City listening to public radio
I feel connected, flowing with human news and world events
Comforted by nature's waning but ever transcendent presence
Contemplating leaving all this again - opting out -
(as if this is ever truly possible)
But opting out and away from this strong, live connection
To a weaker place
Where radio signals still get through
But life has localized its pace
And big issues shrink in the heat
To rougher, harsher and perhaps more cruel daily events
Where injustice is a given...
That's where I'm driven

Why are you going to Africa?

Why? If someone asks me that question I usually don't have any desire to even answer. This question usually means that my answer will probably make no sense to that particular person.
Opt-out answers...
Why not?
Because I can.
To get away from people like you!

December 29 2009

A toast again before
The end draws near
As bubbles rise in amber
Cold and clear
Familiar hot and dirty hands
Stoke the fires of fear
A dawn burns
Rising in the throat
Of this new year
We hoarsely cheer!
T'will all be just
As frightening then
As now my dear.

Human Highlights

Stories from the Earth. Human Highlights : 12/22/09


I met with a family and explained that maybe I could help them decide whether to take their beloved mother off a ventilator and to stop prolonging her suffering. I planned to meet all 10 of her children tomorrow to assist with this difficult situation. Then I ran upstairs to the birthday party for my patient who died yesterday morning. His friend had decided to continue the party even though he was gone. She came and left food and a birthday cake with a single candle taped to the box. We looked at it. No one wanted to be the one to blow it out. On my way home I got off the train on Roosevelt Island to visit Coler-Goldwater to see my old drinking buddy(he’s 45) who has ended up with oral cancer, a tracheostomy and in a diaper. I asked him what type of cancer he has. He wrote “a medium sort…but bad on my tongue…I’m too weak to do chemo.” I gave him his Christmas present, a pair of cashmere socks. Why not cashmere when you are sick? Then I re-boarded the train home. As I walked through the post-blizzard New York City streets I looked to my right to see a crosstown bus pulled in to the stop. A young blind man had walked toward the bus and directly into a huge bank of snow. He kept walking unsteadily through it even as his stick could make no sense of the substance and then he hit the mailbox buried in the snow and kept ploughing into disaster. I was scared he would fall under the side of the bus. I stopped to see if I could assist. Someone else had run to help him. I waited a while to make sure he was OK.
We are human. Things happen. And this is what we do.

Incensed

The family arrived after the 10am appointment time. We gathered in a windowless room where I and the doctors stood as our patient's wife, son, daughters and son-in-law sat before us. I took the lead "...Your husband remains very sick on the ventilator with no sign of meaningful recovery. As you all know you presented an affidavit that tells us that your husband and father would never want to spend his last days on a ventilator. The affidavit has now been approved as clear and convincing evidence by our legal department and this means that we can fulfill his wishes as transmitted by you -his loving family- and remove him from the ventilator". The family had some questions; "He looks better today than yesterday, does this mean anything?" A good question. We had noticed that the edema had subsided and his oxygen requirement although high at 50%, was the best in weeks. This seems to happen a lot. A profound decision is made and a patient suddenly starts looking a little better. I cannot say it does not perplex me and make me question the process. There is nothing certain in life or death.
The medical team is confident that the changes are unimportant in the bigger picture of this patient's multiple morbidities and we say so, but we all 'caught ourselves' momentarily inside, I know.
"That's it we have no more questions".
I go to the room, the morphine is running lightly and smoothly, the patient is unconscious but moves and can cough. I move the bed to sit up my patient to a comfortable position. I prepare the non-rebreather mask, remove the ties that hold the breathing tube in place. There is no room for the whole family between myself the ventilator and the IV poles. There's a lot of straining and reaching. I deflate the cuff on the ET tube and quickly hit the mute button on the ventilator. I pull the ET tube out and cover it with a cool blue chuck.
Mr. Saieed breathes without any distress. I change the alarms on the bedside monitor, it will only alarm if the heart rate goes below 25, and the other parameters I disable. I suction the patient's mouth and wipe his lips.
I tell the family "He has his wish, talk to him, be with him. I will be here for you throughout the day."
A couple of hours later I get a call- I was already on my way. One get's a sixth sensual feeling for these things. I arrive, the patient's vital signs have ceased; the numbers returning to zero. The family is distraught. They are talking to him. They are loudly saying his name touching him seeking a response. "Pa? Pa?"
This too is something I have observed. A medical team can never anticipate the crashing orchestra of emotions and memories that accompanies the death of a unique loved one. The finality -although perhaps often clear to us- is rarely completely accepted by the family.
His wife runs to me and holds me crying, she puts her head on my shoulder, I hold her tight. Those cultural competencies and societal mores I read about fall back onto the pages of my old textbooks. The eyes of his daughters are intense clear greens filled with tears and unanswerable questions. They appear lost.
The family members cry and talk to him. His wife ungrips me and tells me "He never said a bad word to me in his life, never, he was a good husband."
I stay with the family briefly, but my work is mostly done now, I quietly continue to be -most importantly- a witness.
I exit the room, the curtains are partly drawn. Suddenly I am surprised as a huge cloud of smoke suddenly shoots out from behind the curtain with the intense pungent smell of incense. In a hospital unit like this, lighting anything is strictly forbidden. I know this. I am torn by the impropriety of the action. I stop to think momentarily. Then I smile and walk away.

The Same Cloth

For World Malaria Day 2008

The same cloth

The same piece of cloth
They carried you on as they rushed your body in
Thick saliva rolling from your open mouth
Eyes disengaged.

The same green cloth that held you tight from birth
To your mother’s back
How deftly she wrapped you in and up and laughed
Coming from the market.

Now she stands stripped of fabric and form
Watching over your tiny body
Which lies aligned and straight
As never before in life.

Eyes half open
Looking out beyond the sky
Your velvet skin immobile
Weeping on patterned cloth.

Gently your father rewraps you in it
As travelers always do
Like a parcel of food
Prepared for a long journey.

And held out like an offering
You are quietly borne away
In that same cloth-covered bundle
See how all the edges are frayed!

Burundi Lives!

WHAT DO I KNOW ABOUT DEATH AND HOW SACRED IS LIFE, REALLY?

I FOUND THIS IN MY DIARY FROM BURUNDI September 2005. I'M WRITING IT HERE AS I WROTE IT THEN.

How sacred is life, really? Oh how we talk and point the finger at the relative by the grave who shows no emotion. The daughter who does not cry, the wife who sheds no tear. Immediately suspect of something- cheating, lying or living a lie. All the lies lying in the mind of the observer, hmmm. Anyway the tears are never really for the dead only for and from the living - sadness yes, but a life well-lived should bring as many smiles as tears.
So what do I know about death? I lived through the fear of AIDS of dying myself and lived to see my young friends die and I continued to grow older than they ever did. I caught up and overtook their ages frozen(so wrong!) where they fell. And all of us so young then to have to die and see them die...
And so I became a nurse and soon find myself among the dying and see my first real live corpse, a chinese lady as I remember. Nothing there! And nothing so 'sacred' I could see. That was interesting seeing just a shell.
Growing as a nurse opening to meet the grief that comes at unplanned endings. The almost sinful joy I found at meeting loved ones at the edge and learning as I tried clumsily to comfort. Every death a lesson surrounded by waves of grief radiating out. Lifting me often. Tides of life.
September 11th my eyes looked into those of a young woman burned in an instant of terror in terror. Less than a week later I drag her mother screaming with grief and disbelief to the emergency room as her daughter died. What did I know?
And years later here, now- I watch as beautiful pale black children sink and die from malaria too late to treat or save, eyes focussed elsewhere. The breathing stops when all other systems are exhausted.
And the African mothers and fathers what do they know about death?
" Oh they're used to it", "it doesn't affect them like it does us", "they have more children anyway". Really. If I only knew what they know about death.
What do I know?

N'djamena -built on sand

Goz Beida - flat surrounded by hills

Central Goz Beida- a lot of bad tempered military hangin'

- N'DJAMENA
Dusty sand roads unpaved, generators loudly running( kind of like lawnmowers in the summer of my youth) women with colored fabric covered heads and bodies and yes-the men in full-length whatevers and an insane looking wind of white cotton wrapped around their heads. Two women selling peanuts under a plastic sheet construct. A man being diligently hand shaved of his head hair. Many man-made scars on the dark faces I meet. These fascinate me as an echoing of past pains and an underlying nativity of a deeper different sort.

EVERYDAY IS AN ADVENTURE

Greetings Nurslings- I am now truly back in NYC. I am right smack bang in the middle of interviewing for a job as a Nurse Practitioner. My fears of recruiters being 'put off' by my strange resume of late are calmed somewhat by the wonderful reactions of those who have called me for interviews. I think it is certainly seen by more enlightened recruiters as an insight into one's manifold capabilities. So in effect you tend to be picked up by the more progressive recruiters-which is what you want, n'est-ce-pas? I am hoping to have some exciting news to share with you soon.
I have thoughts on BLOGs from the field. Lately they have proved extremely problematic for NGO's as employees have posted personal observations. information and opinions which can in fact cause grave repercussions. Even before I arrived in N'djamena I decided not to write a live Blog during my time in Chad for various reasons but I did keep a little diary. I have decided that now I am going to share pages of my thoughts written as I navigated my mission along with photos. I also may include passages from my first mission to Burundi as on reading them they have a power which brings me right back to the place I was. ALL my musings add to my contemplation of NURSING and how this chosen profession is ripe for enlightened change and expansion.....

Salaam

GOOD NEWS DOESN"T SELL

NURSLINGS!
I did not realize that I actually would not narrate my lived experience in Chad to you all- So I'm sorry that the experience was denied you 'live' so to speak. I have lots of new thoughts on blogging and travel and the utility or not of this form. What I do want to say is that I had an amazing experience in Chad and I will narrate it all shortly with pics to match. The voyage is as much about one's self as it is about the people in need.
Stay tuned, I arrived in NYC on 1st of march and am excited to see what the future brings...this city is amazing, if you want to find a place to feed your soul with the food of informed compassion and caring this is it. I can't wait to see what awaits.