Fieldset
From Tripoli With Love

"But the patients. My God, my heart, the patients."

Amy Neilson and an MSF colleague
Photo: Amy Neilson

To anyone with a penchant for complexity and challenge, I offer up for consideration the coordination of a pilot non-communicable disease program in a magnificently mixed-up country hosting its neighbours amidst the biggest movement of people since World War II.

It is spectacular. And I know it is weariness that is contributing to my leaving with a heavy heart.

For I have fallen in love. Over and over again with each patient that has held my hand, that has kissed me, that has benefited from what we’ve been able to do as a non-communicable disease (NCD) team. Every patient that has thanked a God I am ambivalent about for my presence in their world.

I have wondered in admiration at a team that has tolerated me and encouraged me. And laughed generously at my frustrations and apologies.

"Don’t worry, we love you," says the health promotion supervisor for the eighty-third time.

The determined Palestinian statistician argues fiercely and screws up her face at my stupidity. Sitting calmly in grey spaces where I never quite expect the numbers to add up, I shrug my shoulders and she narrows her eyes and shakes her head. Yet also she feeds me, laughs with me, and rivals me for adoration of my perfect nieces, calling out for more videos from my sister.

The head of nursing has the stamina, intelligence, and fortitude of three workers, can find a way forward when I am fuming at complex human resource challenges, and remains ever-positive and productive, answering a phone that never quits long after I would have flushed it down the toilet like a tiresome ward call pager.

Photo: Amy Neilson

Always, always, always, we are blessed in complex scenarios with meeting great people.

But the patients. My God, my heart, the patients.

When your sister turns to leave

Only when she's most in need

Take away the cause of pain

By showing her we're all the same

Have no envy and no fear

—Joshua Radin, "No Envy No Fear"

There is a narrative of vulnerability and resilience, empowerment, stamina, and indeed disempowerment that I remain inadequate to describe.

In his recently published book, Syria (Abboud 2015), Samer Abboud says, "there is such an obsession with the Islamic State of Iraq and the Levant [ISIL] and an irrational fear of Syrian refugees in the West that encourages us to ignore the very real suffering of Syrians who have to live while spectacular and exceptional violence surrounds them."

Aisha is an eight-year-old child with type one diabetes. Upon learning she and her family had left Lebanon for Turkey, with plans to journey the best they could to a better life, I sat with her medical file, staring at it, holding it as a proxy of a child I wanted so much to help.

Our social worker once tried to explain an Arabic saying to me: "Something about if luck is magnetic then Aisha is wood. Luck just can’t stick to her."  

A middle child in a family of nine children, her mother in her mid-thirties raising the children alone in a plastic tent in Akkar Province, northernmost Lebanon, where they’d retreated to escape the violence of the Syrian war, Aisha repeatedly reminded me that even resilient survivors have their limits.

Aisha's father had been moving in and out of Turkey in his endeavours to provide for his family when the situation shifted at the Turkish-Lebanese border and for whatever reason related to his paperwork he could not return. While Turkey abides by the principle of non-refoulement, it also adheres only to the original 1951 Geneva Convention on the Status of Refugees. Consequently, seeking asylum in Turkey largely remains restricted to Europeans. With a family to support and no perceivable future in Turkey, Aisha’s father thus journeyed to Germany.

When I met Aisha our clinic staff had already known her a while. I’d been hearing about her over phone conversations and was aware that things were not going well in her complex young life. Type one diabetes is a challenge for anyone. The additional, life-limiting obstacle Aisha faced was the absence from her life of any single adult that could assist her with managing her injectable medication—insulin. Using a hand-held glucometer to measure blood sugar levels and a needle and syringe to deliver insulin to her tiny body was solely her responsibility.

That Aisha was alive at all was testimony to her intelligence and resilience. Yet the longer we knew her, the more we saw her stress increase, her fragility emerge, and her capacity to cope lesson.

Certainly we didn’t sit idly by. Multiple members of the non-communicable disease team worked intensively and assiduously with Aisha. The social workers with their persistence and networks of supports and options were called into play. Yet as these avenues were unfolding, for reasons known only to themselves, Aisha and her family left on a risky journey to follow her father. After hearing she’d made it as far as a refugee camp in Turkey, we lost contact.

My saddened team was left wondering and hoping. Hoping, I think, they’d one day read the story of a little girl who survived being wood, if luck was magnetic.

Photo: Amy Neilson

Our clinic in Akkar requires patients to ascend stairs to the first level. For some of our chronic disease patients that challenge is insurmountable. I met sixty-two year old Batool in a car in the waiting-area-cum-turning circle at the entrance to the clinic. A patient with type two diabetes, she was new to our team. Sitting in the back seat of a sedan, she tried to turn her body to move her foot to the chair I’d positioned next to the open car door so we could examine her painful, infected lower leg. With each increment of turning she scrunched up her face in pain.

Her daughter explained the history of the foot infection, from the initial simple injury of standing on a nail though the interactions with various medical services in the region; over five months watching her mother get more unwell, the infection progressing both up the leg and into the deeper tissues. For at least two of those months her mother had been unable to walk; confined to her makeshift bed in a tent barely bordering on weatherproof.

I leant against the car holding Batool’s hand as her daughter, her son, our social worker, and our general practitioner discussed and translated extensively amongst themselves.

Batool’s leg was at such a stage than intravenous antibiotics and possibly surgical intervention were required. Batool was terrified of attending the hospital. Absolutely terrified.

Throughout my time in Lebanon I had come to share the refugees’ reticence about hospital attendance. Nothing will ever detract from my admiration for the Lebanese for hosting so many of their neighbours, but that is not to say there has been a seamless assimilation into existing systems.

As tears rolled down Batool’s face, so I too lost the battle of holding them back. I had developed a preference for avoiding hospital admissions, focusing where possible on intramuscular antibiotic use and regular dressings in our clinics instead, but I was worried this was not adequate for Batool. I was worried about gangrene, about her losing the foot, about sepsis. I was worried I would be negligent in not sending her to hospital. With such ease could I have treated this lady in the Short Stay Unit of any Australian Emergency Department. Really, such ease.

Standards of care. Finances. Needs. Desires. A family medical meeting in the carpark, we discussed it all. Full and frank disclosure and consent. And thus, Batool and her family decided to present to hospital.

I will truncate the updates as I run the risk of losing you. Suffice to say, Batool was indeed turned away from the hospital, and no, she didn’t come straight back to the clinic. Challenges abounded. But so did our persistence. Batool was closely followed by our social worker, who kindly tolerated my repeated requests for phone calls to the family to ensure progress. I took to doodling "I don’t want her to lose the foot" on the long-suffering social worker’s whiteboard.

Our persistence paid off. Batool didn’t lose her foot. We did eventually win the battle of hospital admission, even though financial concerns quickly saw it truncated. With subsequent close follow-up in our clinic, over the past two months I have watched Batool’s foot heal, and her beautiful self return to reasonable mobility. I have visited her at home, sitting with her on the mat as she tells her story to others, drinking tea prepared by her daughter-in-law, playing with her grandchildren.

Really . . . What of the elderly?

If my mother matters, then so does Batool. It’s been reported that the elderly, considered perhaps overly inclusively as those over 50 years of age, receive less than 1 percent of the funding available in humanitarian emergencies (HelpAge International and Handicap International 2012).

Batool matters. Her foot matters. Her repeatedly expressed gratitude to MSF for delivering a standard of care that saw her wound heal matters.

I have colleagues that share my horror at the general lack of investment in the elderly in emergencies, and others that are less fazed. "I’m okay with that," a friend says, "I’m okay with the focus being on children."

And thus with the shrug of a shoulder we redefine the value of a human life.

Are human rights existent, or are they, as we perhaps often treat them, something to aspire towards? The right to health, par exemple.

Photo: Amy Neilson

As I attempt to assemble my thoughts and hand over this project to the next incumbent, there’s a kind of existential worry that envelops me like a comfortable blanket. The peace of grey zones. For I’m not sure beauty and horror were ever meant to be reconcilable. We hold the mess of the world in tension with its greatness.

My small niece waves hello on a WhatsApp video. A GP calls me about a patient who has died, in my determination prematurely and avoidably. We discuss. We analyse. We make plans to address the cause of this death by noting the risk for it in others. Another doctor calls to add a patient to my growing list of those whose cardiovascular disease or diabetes has now resulted in renal failure. A colleague laughs at an everyday quip in the office. The cat from downstairs wanders in looking for her kittens. And the call to prayer rings out across the town of Tripoli, northern Lebanon. The irreconcilable beauty of the Arab lands.

As far as I know, all wars end.

Even though you are drowning in valleys of echoes

I believe there is peace in those hills up ahead

You will climb ‘til you find places you’ll never let go

And I will also be here praying just like I said

—Katie Herzig, "I Hurt Too"

May this war end very soon.

[Names and ages have been changed to protect the privacy of our patients.]

References:

Abboud, S. (2015). Syria. Cambridge, Polity.           

HelpAge International and Handicap International (2012). A study of humanitarian financing for older people and people with disabilities, 2010-2011. London.