Yes, there is hope, God willing

“I don’t want to go now, Doctor,” said Abu Hasan, covered in blankets to his ears, shivering. “Can we wait until tomorrow to do the X-ray?” What do you say to a man paralyzed from the belly-button down, who has already been through so much, to convince him to go through yet another hospital visit? Where every transfer to a new bed means pain, where he does not know if his family will be able to pay? But I was worried about his left lung. There were no breath sounds. In the context of his chills, increased heart rate, increased productive cough, and an episode of blood when he coughed, I did not feel comfortable waiting.

I had arrived in Amman, Jordan, two weeks earlier to volunteer for two months with the Syrian American Medical Society and National Arab-American Medical Association. Since the start of the Syrian revolution in the midst of the Arab Spring in March of 2011, I had been looking for a way to help the Syrians, who had been so welcoming to me when I studied Arabic in Damascus almost a decade earlier. Since I was starting my internal medicine residency at Cambridge Health Alliance in the summer, I left my biomedical informatics postdoc at Boston Children’s Hospital early and flew to Amman.

Every day I went to an apartment for men with spinal cord injuries (SCI) with Dr. B (all names have been changed to protect refugees’ identities), a Syrian internal medicine resident and refugee. We would check on the 13 patients crammed into a two-room apartment that was the only known location focusing on refugees with spinal cord injuries in Amman.

In addition to staffing the SCI apartment, Dr. B and I spent two days each week volunteering at the Saudi Hospital in Za’atari refugee camp and volunteered on “medical days” with the Jordanian Women’s Union helping refugees living outside of the refugee camps. (Za’atari, which has about 144,000 refugees, opened in July 2012 and is managed by the Jordanian Hashemite Charity Organization, while the United Nations High Commission on Refugees is responsible for the refugees.)

Abu Hasan had arrived at the SCI apartment earlier in the week. Shot through the spine on the outskirts of Damascus near the end of January, this 50-year-old father of two was brought to Amman by his brother Mahmoud.

The SCI patients come to Amman because it has the nearest MRI south of Damascus, offering the hope that maybe one day surgery can treat their paralysis. While no official count was available, approximately 150 Syrian refugee SCI patients were estimated to be living in Jordan’s capital.

Earlier that day, Abu Hasan had gone to a hospital for his MRI. Mahmoud complained that the hospital had no stretchers available, so Abu Hasan had to be transported in a wheelchair. At one point he slid from the wheelchair onto the floor.

Now back at the apartment, Abu Hasan continued shivering. Sweat pasting his salt-and-pepper hair against his forehead, he smelled of cigarettes. He looked tired beyond his 50 years, understandably wishing to rest rather than make a second trip to the hospital. When resources are limited and funding must be split among all 13 SCI patients, I questioned myself repeatedly—does he really need an X-ray now? This economic question had already impeded our ability to seek the best care for the patients at the SCI apartment, so I gathered myself, and spoke to Dr. B and the director of the SCI house about taking Abu Hasan to the hospital.

Ambulances are expensive, so five of us squeezed into the director’s Ford Explorer. The director drove with Mahmoud up front, Abu Hasan supine and shivering in the back next to me, and an aide from the apartment. A doctor greeted us at the first hospital, did no examination, declared Abu Hasan stable, and told us to go to a different hospital in case he needed the ICU. I was confused by the contradictory statements, but away we went. At the next hospital, we arrived in the emergency bay and spoke to the doctors. After 30 minutes of discussion with no vital signs taken, we took them ourselves. Another 30 minutes and we finally got the X-ray. While the X-ray did not seem to match why I heard no breath sounds on the left, he was admitted to undergo treatment for pneumonia.

On our return to the SCI apartment, the director kissed me on both cheeks and the top of my head, praising me for sounding the alarm and asking for the X-ray. I hoped to earn that compliment. Abu Hasan, despite his pleas, was spending another night in the hospital. I hoped for his sake that something good would come of it.

The spinal cord injury apartment

Depending on the level of their spinal cord injury, SCI patients in the United States can expect to need between $25,000 and $100,000 a year in medical care. The first year after the injury usually costs four times that amount. The higher the level of injury, the more of their body is paralyzed, the more limited their mobility, the more reliant they are on caregivers, and the more expensive their care becomes.

But in Amman, the center does what it can on a month-to-month budget dependent on private donations from Syrian-Americans and religious organizations from Arab Gulf countries. Patients received less than one hour of physical therapy a day. Two attendants with no medical training took on the herculean task of repositioning patients every few hours, changing diapers, emptying urine bags, and feeding the two patients paralyzed from the neck down from cervical injuries. Home-cooked Syrian dishes were prepared by Abu Tariq, a huge bear of a man, former carpenter and survivor of a large massacre in 2012. Most of our patients had injuries at the thoracic level. Having two patients with cervical spine injuries was rare, I was told by a staff member of Handicap International, an international non-governmental organization advocating on behalf of disabled people worldwide. In their experience, those with cervical spine injuries usually die in the field before making it to Jordan.

The small, ground-floor apartment was tucked into an upscale residential neighborhood in Amman. Patients were distributed between two rooms—seven beds packed into one 15- by 25-foot space, four in the other 15- by 15-foot room, and two in the hallways. Walking beside the beds required dexterity to avoid the metal bars hanging above the beds, as well as the urine bags lying on the floor.

The crowded conditions made it difficult, as scabies spread through the apartment, not to mention the challenge of finding scabies treatment in Jordan, which a dedicated volunteer only found an hour away. Dedicated Syrian-Americans also helped organize a transfer to a larger facility in the weeks after I left in April, with more space, staff, and physical therapy. The new center has not solved all the problems, but it is a big improvement, offering a semi-permanent place for rehabilitation and physical therapy. One day, once it’s safe, they hope to move the center back to Homs, Syria.

All of the patients had arrived in Jordan in the five months prior to my arrival in February, some crossing the border undocumented. While this allowed them to avoid detection by the Jordanians, who would put them in a special camp for those thought to be fighters, it meant they were not registered as refugees and not eligible for benefits from the United Nations. Like Abu Hasan, residents are from either the Damascus countryside or a rough neighborhood on the outskirts of Homs, Syria. Most were shot while fighting against forces loyal to Bashar al Assad, the president of Syria, whose family has ruled the country since 1971.

Once injured, they frequently had emergency surgery in a field hospital, though most do not know what the surgeons did or what organs may have been removed. They do not remember what medicines they received along the way, but the resistance profile of the bacteria in their urine hinted at how their already frequent infections had been treated. Antibiotic resistance was a growing problem; treatment for one patient’s urinary tract infection required meropenem, an antibiotic that cost almost $1,000, kindly donated by Kuwaiti sheikhs.

The journey from Syria to Amman is especially dangerous for SCI patients because their caretakers—brothers or uncles with low health literacy—do not yet know the high rate of medical complications for those with nerve injuries and paralysis. Honey is a common salve because it was described as a treatment for open wounds in the Qur’an. Stretchers are rare; every hospital visit involving bed/wheelchair/car transfers risks further injury to the unstabilized spine. Patients frequently arrived with pressure ulcers deep enough to see vertebrae. Many arrived with suprapubic urinary catheters, another sign of frequent infections and blocked urinary catheters. Once at the apartment, Dr. B and I would teach patients and their families about preventing common problems SCI patients are at increased risk of facing—bedsores, constipation, kidney stones, weak bones, the need to quit smoking, and urinary tract infections.

Prior to his arrival, Abu Hasan’s brother Mahmoud had been taking care of him as best he could—feeding and bathing him as well as changing his diapers and urine bag. But Mahmoud was still unaware of many of the special risks SCI patients face. As a result, Abu Hasan arrived with a large and deep bedsore on his bum about the size of a softball and intractable diarrhea. As in the case of Abu Hasan, it often required expensive trips to the hospital to stabilize patients after their journey.

Three weeks later

After a long day in Za’atari, Dr. B and I heard that Abu Hasan had died.

We stood on Za’atari’s main street, called Sharia Al-’Aude—The Street of Return—and kicked ourselves as we watched kids throw rocks. We had admitted Abu Hasan to the hospital three weeks earlier for presumed pneumonia, visited him once, then grown complacent. He’s in the hospital, we thought. What could go wrong?

While we had him admitted for his breathing, he had been having diarrhea for weeks before arriving in Amman. His diarrhea had resolved while on antibiotics for the pneumonia. But the diarrhea quickly turned to constipation since he had not been taking any medications to keep his bowels moving, a common problem for patients with spinal cord injuries. I heard he had eight days of constipation before he developed a bowel obstruction. He was taken to surgery and did not recover. After two days in the ICU, he passed away.

The day of his funeral, there had been a bombing in a mosque in Damascus. A prominent sheikh was assassinated after Friday prayers by a suicide bomber who took about 40 others with him. The director of the SCI house spat on the floor, cheering the death of this hated supporter of the regime. He was ecstatic and saw the fact that the bombing was in a mosque, or that it took 40 other lives, as necessary evils for a greater good. For emphasis, he added “Allah MA yrhamu”—may God NOT have mercy on him.

There is a saying of the Prophet Mohammed: “kulkum min Adam, wa Adam min turab,” meaning “all of you are from Adam, and Adam is from earth.” If Adam is made of earth, he seemed angry that day. A sunny morning turned into a dust storm that seemed intent on burying us all. The pale orange horizon consumed the mountains in the distance and swallowed the funeral procession as we walked into the wind.

Once at the gravesite, we stood among the men—for they were all men—who arrived in cars with Syrian plates, placing Abu Hasan, wrapped in the three-starred flag of the Syrian revolution, in his concrete sarcophagus. Concrete slabs were wedged over the box and sealed with red mud clumps hurled with a thud.

I recognized Abu Hasan’s brother Mahmoud by his hands. They are disproportionately large, and at the funeral he struggled more than usual with where to put them. I love his Arabic. Despite my many hours with Yale’s Directed Independent Language Study program studying colloquial Arabic, the different dialects of Southern Syria and Jordan were a struggle. But his long, drawn-out vowels and his slow speech reminded me of people taking their sweet time ordering food in a Southern diner. It also made him simple to understand.

He recognized Dr. B and me, and we hugged; his cinnamon stubble had grown into a beard but could not hide his sadness or the clear disorientation. He was late to the line where everyone passes to shake hands. I wanted to ask how Abu Hasan’s condition had deteriorated so quickly. Ask Mahmoud why he did not call us sooner. When I got to his place in line, I shook his hand, and all I could say was “Allah yrhamu.” I tried to find words to comfort him. “He is a martyr now,” I said.

“Insha’allah,” Mahmoud said, his eyes full of tears that the orange wind smeared down the side of his nose. When the funeral was over, the attendees scattered with the dust from the storm. The director of the SCI apartment and Dr. B recited the chapter Yasin from the Qur’an over the mound of rocks marking Abu Hasan’s body. As we left, we passed by the next wave of graves, the cemetery.

Back at the apartment the mood was somber after Abu Hasan passed away. But within a day the other patients were back to asking familiar questions. Nidal was frequently angry. “There are lots of doctors on the Internet that say it works,” he tells us, exasperated that we failed to provide stem cell therapy to cure his severed spinal cord. “Fi amal?” our newest patient asked just before I left Jordan in April. “Is there hope?” Hope that one day he’ll be able to walk again?

Dr. B and I had told them. We sat at bedsides to answer questions and try to help them come to terms with what will be a lifelong struggle for their own independence. But I lacked the heart to remind them daily that their MRI showed a total cut to the spinal cord. Any type of walking, like with strong, external braces or after treatment with stem cells, is years, if not decades away.

“Eh, fi amal, insha’allah,” I would say. Yes, there is hope, God willing.

—David Scales, M.D. ’10, Ph.D. ’10, is an internal medicine resident at Cambridge Health Alliance in Cambridge, Mass.