5. Patients’ views on the quality of life
One of the main questions posed at the start of my research was how do the patients treated at the MSF hospital live today? The hospital staff and desk managers communicated their intense interest in hearing back from patients on all matters related to their lives after leaving the hospital. It was felt that the most important aspects of the RSP could only unfold after patients returned to their homes and started their lives again outside the hospital walls that both protected and restricted them. The patients’ reflections – mostly collected two to three years after their discharge – are presented in this chapter.
Victims of war and the notion of the quality of life
When exploring the participants’ daily lives, the concept of the quality of life was of utmost importance. This concept is used by many disability-healthcare providers as a measurement of the success of their programmes – programmes that focus on the totality of the patient’s physical, emotional, and social wellbeing (NDS, 2012). As MSF is aiming to adopt patient-centred care as its general operational strategy, and since patients’ quality of life is the final programme outcome, there was an additional drive to explore the concept of quality of life specifically from the patients’ perspective. Determining the patients’ perspective was considered vital, yet it posed a certain degree of challenge. In the field of disability health and rights, over forty definitions and 800 tools exist to describe this complex phenomenon.
Furthermore, literature on disability reports on what is known as the “disability paradox.” This paradox occurs when people living with severe or persistent disabilities still report an excellent quality of life in spite of what many external observers consider an “undesirable existence” (Albrecht and Devlieger, 1999). In the context of the lives of the participants, quality of life appears even more paradoxical considering that most of them are victims of violence, they live with disability, and they live in a war-related context either as refugees (in Jordan) or in Iraq. Due to these underlying notions, it was not clear which elements would, in the eyes of the participants, be perceived as the most important for their wellbeing. I decided to focus on the patients’ own definition of quality of life and from there to examine their perceptions of their lives today.
Many Syrian participants associated a good quality of life with the life they lived in Syria before the crisis. They characterized this as the strong family and social links they had had and as financial stability. They talked about it with obvious nostalgia: “Our life was so excellent in all aspects; we had no obstacles; life was nice – there was nothing bad in it; I was living happily; life was beautiful there; we were living in grace that nobody knows about it but God. By the way, we used to say [before becoming refugees in Jordan]: ‘May God be with the Jordanian people’ [because they are facing so much hardship]”; “my life was on a high level: I could afford anything.” They often made comparisons with their current lives and mentioned having no social or financial security: “People look down at us here in Jordan; we have no financial stability; we don’t know what tomorrow brings.” This was in contrast to Iraqi participants, who spoke less nostalgically about their life before the injury and said things along the lines of “my life was normal.”
There was a large variation in the definition of a good quality of life. Most commonly, participants referred to issues related to health, including emotional health. They emphasized that health is “everything in human life”: for instance, “It’s when the body is complete. It doesn’t lack a limb or an organ. Richness is in health and body, not in money” (RSP7, Syrian, M). Iraqi participants, in contrast to Syrians, emphasized the importance of mental health over physical health. Absence of pain was also a commonly mentioned dimension of good health, as was having access to treatment. Another indicator of wellbeing was social acceptance, which was mentioned as frequently as personal independence. Restricted social acceptance caused a sense of personal suffering, and it was not surprising that the participants considered it an important element of their quality of life.
The concept of quality of life, however, was not only related to health, injury, and disability. Male participants from both countries also prioritized what they labelled as “stability.” The concept of stability was partly related to work and financial security. Other aspects were described as the ability to obtain basic needs: food, a place to live, access to healthcare, clothing, education for their children, and having in place the necessary legal documents. The concept of stability was also related to a “stable family life” (being married, living with family members, family members healthy and alive), being able to perform family duties (provide for the family’s fundamental needs and raise children). One of the participants, for instance, described his understanding of “stability” as follows: “The most important thing in life is stability: having a job, affording life necessities, and having stability in life, such as work, marriage, education” (RSP55, Iraqi, M). Female participants from both countries, more than males, emphasized the importance of personal independence, “living by one’s own efforts,” and “having nobody interfering with one’s life”: “Good quality of life for me means not needing anybody [being completely independent]” (RSP2, Syrian, F).
Other non-health-related definitions of quality of life, mentioned by both male and female participants, were more conceptual: “freedom, life in dignity, love, peace everywhere, life in itself (being alive), and life without fear.” “The good quality of life for me is safety, security, love, and that peace is spread all over. And that there would be no racism, like Sunni, Shiite, Christian, Muslim, foreigner, or Arab. To have peace spread, love, safety, and security; these are the most important things” (RSP18, Syrian, M); and “Thank God I’m living. Good quality of life is when I’m alive” (RSP23, Syrian, M).
Participants also emphasized that “The most important aspect of human life is freedom” (RSP55, Iraqi, M), and this concept was sometimes expressed along the lines of the ability to live in one’s home country (Syrians), but also to leave one’s home country (Iraqis). The ability to practise their religion was important to some participants.
The impact of the MSF treatment on the quality of life
When I tried to reflect with the participants on the extent to which their quality of life improved after treatment in the MSF hospital, it became apparent that the impact was multidimensional. Very few patients reported receiving no benefit from the programme (some were disappointed with new scars or depigmentation after plastic or maxillofacial surgeries, and one regretted having a leg amputated). The vast majority of participants talked about the overlapping areas of improvement associated with physical, emotional, social, and symbolic changes triggered by the treatment. It is important to examine these changes in detail and to reflect on how aspects of the treatment outcomes mean a world of difference to the patients but are currently unacknowledged by MSF.
The participants enthusiastically talked about the immense difference the treatment made in their lives. One of them, for instance, said that “it [the changes in life after the treatment] was like a blind person who could see again” (RSP25, Syrian, M); and “The difference [in my life] was from the ground to the sky” (RSP55, Iraqi, M). What was interesting to note was that this sense of relief was also expressed in relation to their whole families, for whom worry and stress had been alleviated: “My family, they are more comfortable now; there is no worry; they don’t feel worried about my health anymore. My mother [who worried a lot about me before] is seventy years old” (RSP45, Iraqi, M). This statement resonates with Ali’s story, which we covered in Chapter 3, and clearly indicates the double burden that MSF patients carry, “worrying for their family members who worry about them.” Essential to the impact of the treatment was the way it reached into the heart of the family and included the wellbeing of every member.
Some participants reflected on the fact that because MSF offered free treatment, “their stability in life was preserved.” Even the patients who could afford treatment elsewhere (some Iraqi participants) indicated that their livelihood would have been highly compromised if they had had to pay for the treatment themselves:
I have been to Iran and Italy, and I was able to travel and easily get visa [participant travelled a lot for work purposes], and I was financially capable of travelling to seek the right treatment. Other patients might not be able to travel like I did. Another point I want to make is that getting this kind of treatment based on my personal expenses requires an enormous amount of money. MSF covered this treatment and made a difference in my life. Things would have turned bad for me financially if I have done this elsewhere. For instance, if I had chosen to do the treatment on my own expenses, I would have lost everything here: the car, my house. Not that I did not spend my money before [to finance my treatment]. As I told you, I travelled a lot to seek treatment and it did not bring good results. But since I joined this [MSF] programme, I did not spend for the treatment [so I could keep my life stable]. This programme not only did not cause me any expenses: it also achieved marvellous successful treatment results. That’s why this programme is VERY important. (RSP71, Iraqi, M)
Some participants specifically indicated that the treatment at MSF, in one way or another, “saved their life,” and without treatment their “life would have no meaning and was not worth living.” One of the fathers of a young male burn victim commented that without treatment, “He definitely would be gone [would have died by now]” (RSP57, Iraqi, M). Another patient considered that his leg certainly would have been amputated, and then said, “Something terrible could have happened to me [if I haven’t been treated], because if my leg had been amputated, I would have died! I think it’s better to die than to have your leg amputated” (RSP53, Iraqi, M). Another Iraqi patient similarly commented on how severe the consequences would have been: “If I wouldn’t have had access to MSF treatment, I would have ended up with two options: I either get my leg amputated or I would die. This is the truth; the easiest way to deal with such cases in Iraq is, if they decide to let you live [give you at least basic treatment], to cut your leg and throw it away, simply like that” (RSP49, Iraqi, M).
Those (both Syrian and Iraqi) who experienced a walking disability but recovered the ability to walk after treatment emphasized how life-changing this has been for them. Many participants reported being bed-ridden, fixed in wheelchairs, and unable to move in or out of the house before coming to the hospital. Many had been completely dependent on their carers for basic hygiene and other needs, such as using the toilet, taking baths, brushing their hair, and getting water and food. The new sense of control over one’s life was associated with this newly gained independence. One of them described the relief he felt when he regained his basic independence: “I couldn’t walk or step on the floor or bend my legs. But, thank God, now I’m able to walk and I can bend my legs and I’m still living my life and doing my daily activities like going to the bathroom and shaving my beard. I can handle a lot of things now, thank God” (RSP69, Iraqi, M). Another was similarly grateful for his regained independence: “Thank God, I can go in and out of the bathroom by myself now” (RSP6, Syrian, M). A female participant described her long state of dependence in a distressed tone:
I didn’t do anything for one year and a half. I was lying down on the bed. My hands were wrapped. They [family members] took me to the bathroom, fed me, and helped me drink. I couldn’t even dress. You know the praying dress [comfortable outfit used during prayer]? I couldn’t even wear trousers, scarf or anything for three years, just the praying dress. They put it on me and let me walk and move around like an elderly person [in that dress]. (RSP21, Syrian, F)
About one third of participants, particularly male participants whose capacity to walk had improved, reported having obtained work after they completed treatment at MSF. They were clear that this would not have been possible otherwise: “Because my leg was straight [in a fixed position], I wasn’t able to get work. Whatever I wanted to do, I couldn’t. For example, [I couldn’t] bend down and carry something” (RSP5, Syrian, M). Practising their profession, they reflected, was also important and would not have been possible without physical improvements: “Workwise, my major is pharmacy and, as you know, it requires standing for a long time and moving around, so [lack of treatment] definitely would have affected my job” (RSP67, Iraqi, M). Furthermore, some Syrian participants who are now able to practise their profession as before in Syria stressed how important this was. They wanted to “have a life like before the war”: “Before I went to the MSF hospital, I really suffered from pain. I couldn’t carry things. I couldn’t carry heavy things. I wasn’t comfortable. But after I went there and had the surgery, my life became normal. Before, I couldn’t work. I couldn’t practise my profession [as a blacksmith]. But after I had the surgery, I can work now” (RSP9, Syrian, M). Another Syrian participant commented how he recovered his sense of “normality”: “There are many things [I can do now]. I wasn’t even in balance before. I can do everything. I can drive a car. I can carry doors and windows. I work. I am back to my normal life as if I was [still] in Syria. I can do anything” (RSP7, Syrian, M). Indeed, along with the reconstruction of their bodies, the reconstruction of what they referred to as a “normal life” was underway.
Removing the obvious signs of injury – for instance, having external fixators taken off – also made participants feel that their employment opportunities were further improved: “Nobody will notice that I am injured now” (RSP33, Syrian, M). The visual improvements reported by some plastic and maxillofacial patients similarly enhanced their opportunities for work. Some who were not employed connected their lack of a job to the severity of their injury or to their socio-political context: “Whether with crutches or without, there are no available job opportunities. Our economic situation is increasingly collapsing [in Iraq, particularly in Anbar]” (RSP64, Iraqi, M). Some female participants continued in their pre-treatment occupation; two, for instance, worked in a beauty salon. Some, who were engaged in household duties before, improved their ability to perform home chores and thus they could fulfil their family and social obligations, which they considered immensely important to their sense of purpose. Some younger participants also reported that after treatment they were able to continue their education. This was seen as quite a challenging step considering that after the injury they had spent many years outside the classroom.
For maxillofacial patients, the capacity to chew food again was described as simply revolutionary:
This story I’m telling you [about my condition] is taking minutes to tell, but it took years of my life. One of the simplest examples [of my new life] was when I started gradually recovering and I started eating. At first, I started with baby-food items, eating soft food and liquids, no chewing, as I had no teeth. No food, no sandwiches. I used to sigh when I saw somebody bite a sandwich. I was hurt emotionally to see someone eating and chewing. I dreamed that I would be able to eat nuts again, which I love very much, and be able to bite and eat apples. (RSP71, Iraqi, M)
Besides physical improvement, a great sense of emotional relief was reported by both Syrian and Iraqi participants. Feeling “happier,” “less fearful and upset about life,” more “hopeful and optimistic,” and “relieved” were common expressions used to describe this crucial impact. “It [the injury] was a worry, which vanished,” one of them summarized (RSP38, Syrian, F). A “change of mood” was an expression frequently used to describe self-perceived emotional improvements. There were multiple reasons for this renewal. To begin with, emotional relief was immediately felt in the hospital in Amman due to the observed progress in treatment and physical improvement: for instance, “with every surgery, I could see my body improving.”
Some experienced this phenomenon after they had already given up on their limbs and despaired of their hopes. A sense of relief was particularly acute for those who knew that they were at risk for leg or hand amputation, but whose limbs were saved at the RSP. As they improved physically, participants’ fear of becoming disabled in the future lifted: “Sometimes I see on the television disabled people with completely damaged arms or legs; if I hadn’t gone to Amman I might have been like one of them – a disabled person” (RSP51, Iraqi, M).
The second cause of emotional relief was a reduction in the pain that had often caused daily suffering and disturbed sleep. One of the participants described his severe pain: “It was a very difficult time for me [before the treatment in Amman]. I had reached a point when I told them to give me a knife to cut off my arm because of the pain” (RSP59, Iraqi, M).
The third reason for an improvement in participants’ emotional states was related to their new sense of security. Syrian participants, for instance, mentioned finally having stable accommodations at the MSF hospital, which had not been available to them from the moment they entered Jordan until their entry to the RSP. For Iraqis, a sense of security was gained simply by being removed from the tensions in Iraq. For some, a sense of insecurity, induced by injury-related trauma, hounded them for years. One of them, a former political prisoner, described this: “I changed my mood [recovered emotionally] by travelling outside Iraq; this was the first time for me to leave Iraq [after my imprisonment]” (RSP46, Iraqi, M). Another participant similarly commented: “I felt better in Amman. You know the situation in Iraq was at that time terrible: explosions everywhere and the security situation was deteriorating; so, when I was in Amman, I felt comfortable and everything there was better. I felt safe and my mood was better” (RSP53, Iraqi, M). These statements were frequently followed by an explanation that their emotional relief was only temporary and vanished once they returned to Iraq: “Believe me, when I was in Amman my mood changed and I felt better. And when I came back [to Iraq] I felt better for a while, and then later it [my emotional status] got worse and it’s very bad now. It’s rare that I feel calm. If you notice when I came here [to meet you] I was mad [angry]” (RSP46, Iraqi, M).
The MSF hospital staff often consider long hospitalizations a negative for the patient (absence from their families, from their work). The time the RSP patients spent away from the intense stress of daily life, however, seemed to be crucial for their emotional recovery. Kubiak (2005) suggests that chronic daily stress may gradually diminish people’s capacity to cope effectively with traumatic life events, thereby increasing the likelihood that they will experience symptoms of PTSD. There is evidence that the participants’ recovery was multifaceted and that the prolonged course of treatment at the RSP was instrumental in their recuperation, including long-term beneficial consequences for their mental health.
An improved emotional state was also reported to be directly related to enrichment in participants’ social lives (reported by both Syrians and Iraqis). This was true particularly for those with increased mobility and aesthetic improvement. The emotional toll associated with being completely dependent on others socially isolated most of those participants. Much of this burden was lifted after treatment. A father of a female patient (RSP32, Syrian, F) described this: “Before she had the surgery, if she wanted to go to the toilet or just get up, she couldn’t do that unless we helped her. When she had the surgery, she could walk by herself and bend her leg or walk alone in the street by herself; this was a big happiness for her.” Some participants reported gaining new marriage opportunities after completing the treatment. One of them was clear that it was not only the improvement in his injured arm and leg but also his improved emotional state that enabled him to get married: “Honestly, I have disability in my arm, leg and poor eyesight. But I’m practising my life normally. I have a family. I got married. I have a girl [daughter]. They [MSF] treated my arm. They treated my leg. I’ve become capable of getting married. It wasn’t possible before the treatment. Even my emotional state wouldn’t have allowed me to get married before” (RSP20, Syrian, M).
New social opportunities were also reported by those with improvements in their appearance. One of the young male participants reported living in complete social isolation before plastic surgery on his face. He noted: “After I reached Amman my whole life changed in terms of treatment and my emotional state. My life has changed because before I was locking myself in my room twenty-four hours a day, but now I can go out” (RSP43, Iraqi, M). Even visual improvements on parts of the body other than the face seemed to have a positive impact on participants. One of them described how “shy” he felt when he was shaking hands with people, because his “pinkie finger was fixed in a bending position.” Not being asked “about the injury all the time” was also mentioned as a life-changing benefit in social interactions.
Participants also described improved appearance as changing their sense of dignity. One of them described how the deformity of his mouth caused “the tea to pour out of it,” which made him “feel embarrassed in front of people.” He expressed his relief when this problem was solved after successful surgery. Another participant felt embarrassed “when saliva was coming out of my mouth when I was speaking.” “The difference,” he noted, “is that now I gain respect and what I speak about has an importance and people finally listen to me.” “Speaking clearly” was also crucial for a participant who managed to maintain his professional life throughout the years-long treatment period. “Without teeth, I wasn’t able to pronounce clearly, and it was hard for others to understand me. And physical appearance: I looked horrible before fixing my jaw and my teeth. This was so important, knowing that my work required meeting with other people, new people [and making positive impressions on them]” (RSP71, Iraqi, M).
Even the less obvious “gestures” from MSF increased patients’ sense of dignity. Receiving MSF’s per diem, for instance, not only helped Syrian patients to visit their families across Jordan in the intervals between treatment: it also had a great symbolic meaning attached to it. One of the participants, whose family was completely financially dependent on relatives, talked about the huge difference that arose when he was “finally able to manage his finances”: “Everything has changed. Before, I was upset with this life. I didn’t have money or anything. Her brothers [wife’s brothers] used to pay our house rent. MSF gave me five JDs [Jordanian dinars]. I could manage [my finances] by myself, at least. I was so upset before. I had my soul back again because of the happiness I had for going to Al Mowasah hospital” (RSP19, Syrian, M).
There were other symbolic meanings attached to the treatment at MSF. A confirmation of Muslim values – stemming from the notion that participants lost trust because human life was uncared for in Iraq – is one example:
For me as a Muslim, of course this [good treatment at the RSP] is important. Because the Quran says: ‘Religion is all about good treatment.’ The best thing in life is the nice treatment and that is what every Muslim loves and hopes for. In Western countries, who are Christians and Jews, they are not Muslims, but they treat each other with respect, and they rule with justice. But we all here [in Iraq] dream of justice! So why would you ask why this is important to me? Of course, this is important to me and to every Muslim. (RSP46, Iraqi, M)
Another participant expressed a new sense of loyalty: “[I learned] loyalty to the patients who were with me, and to the staff of the hospital” (RSP46, Iraqi, M).
Thus, the concept of quality of life appears to be a useful tool for assessing the impact of the programme, especially since understanding the quality of life for each patient is an essential part of establishing an individualized approach to care. According to participants’ definitions of quality of life, the MSF programme currently addresses multiple aspects of the concept by directly improving the physical, emotional, and mental health of the patients and advancing their personal independence, by indirectly providing new opportunities for work, marriage, and social life, and by enhancing their general sense of stability. Other, less obvious aspects, such as the sense of safety, dignity, increased pleasure (for instance, the capacity to eat again), and a regained sense of “normality,” are also tackled through a patient’s exposure to the programme. Within MSF operations, the RSP is not considered a “lifesaving programme,” but from the patients’ perspective it is. The feeling that their “lives had been saved” was directly mentioned. A sense of freedom, “love and peace everywhere,” and a “life without fear” are elements of the quality of life which were experienced by some patients in the RSP and are important for people affected by war.
Diverse mechanisms of adaptation
Thus far we have examined how aspects of participants’ personal, professional, and social lives were influenced by treatment in the RSP. Improvements in the quality of life of the participants, however, were largely dependent on the participants’ own ability to adapt to change. The participants reported a number of different mechanisms they employed in an effort to make sense of their current existence and gain a new perspective on life. Similar to the way they framed their war narratives, they strategically used observations and explanations and attached different meanings to their experiences. Let us look at some of these mechanisms.
Seeing the misery of others…
Surprisingly, the most commonly reported coping mechanismPsychological literature on stress and reaction to adversity distinguishes between “coping mechanisms” as a conscious (intentional) strategy and “defense mechanisms,” which are considered to be applied outside of awareness (non-intentional). There is a controversial debate on the extent to which the categories overlap and whether they are considered “adjustment” or “maladjustment” (Cramer, 1998). I use the term “adaptation mechanisms” to refer to both conscious and sub-conscious processes. I use the term “coping mechanism” to describe conscious adaptation mechanisms, given that participants self-reported them.was witnessing others who they perceived were in a worse situation: “When you see other people’s misery, your misery is nothing compared to theirs” (RSP8, Syrian, M). Even participants whose injuries were rather severe maintained this approach. One of the Syrians who suffered from burns over large parts of her face and body commented: “I have my own skin. It’s OK. There isn’t anything very bad. I have a picture of a Palestinian woman [a burn victim]. When I look at it, I thank God [for my condition]. She’s Palestinian. She was shown on the news. I compare myself to her. This gives me more motivation [in life]” (RSP15, Syrian, F).
Another participant who lost his eye and had one arm amputated after an explosion in Iraq reported:
When I was observing other injured people [in the hospital] I realized I was not exceptional among all other people, and I’m not the only one who was injured. So, I was satisfied [with this realization] and I accepted my destiny. I also noticed that many patients had lost their legs, both legs, and one of the young children’s faces was entirely burned. I know I have lost my eye, but I am better because I kept my facial features, and I have lost my hand. If I am ashamed somehow of my amputated hand, I can hide it in my pocket [if I don’t want anyone else to see it] and I can cover my eyes [with sunglasses] [participant is wearing sunglasses during the entire interview]. But this poor child, how can she cover her face?! (RSP61, Iraqi, M)
“Never will we be struck except by what Allah has decreed for us; He is our protector” (Surah At-Tawbah [9:51], Verse 51, Quran). This quote from the Quran was framed and hung on the living room wall in one of the participant’s houses. Religious beliefs served as a source of strength and inspiration. One of the participants expressed it this way: “The strength is all from God” (RSP5, Syrian, M). The following quote from the Quran was mentioned by a number of participants when talking about religious inspirations: “The prophet says: ‘The one who stays in his house, has good health and food for the day, is the one who owns all life.’”
A great level of acceptance and calm was also seen in those who had taken a fatalistic approach: “It was all God’s will; it’s our fate, and we should continue with our life.” Some interpreted their past as “a lesson that God has sent to them to test them”: “Thank God, it’s a test from Him. It’s His will” (RSP6, Syrian, M). Another participant also took a positive, religiously inspired outlook: “I believe that this is a message from God, and everything changed after that. He did not want me dead! Before the injury I was wild, way too wild. I had no faith, did not pray. But this is a lesson from God, and I have changed [for the better] since the incident” (RSP61, Iraqi, M).
Positive outlook on life
Many of the participants revealed a positive outlook on life and communicated a great deal of self-reliance and self-confidence when they talked about coping. One of them conceptualized his life lived with few available resources to be simply a part of the general human condition: “In the old days people lived similarly, with no water or electricity. So, one should be able to adapt” (RSP13, Syrian, M). Some appeared content and explained that they had drawn a line between their past and present lives: “Life has changed. When one is out of Syria, there’s security. There’s no bombs or anything else. We live here. We go to work. We have forgotten everything we went through. But it would be a memory of what happened with us in the past” (RSP9, Syrian, M).
The importance of hope was mentioned as a concept that kept them going: “Hope. One just keeps on hoping” (RSP14, Syrian, M); and “Let me tell you something: I have hope that we will go back to Syria and be like we were before. That is what gives me hope in life. I haven’t given up on hope” (RSP28, Syrian, M).
An attachment to life was recognized as the ultimate source of strength: “Because we wanted to stay alive. Life has to continue” (RSP25, Syrian, M). Levels of acceptance and optimism were very high for those who had had near-death experiences. One of the participants, who was in coma for a long period of time, expressed this: “I thank God always for saving me because it was like a miracle [that I survived]! Even when people come to visit me, they say, ‘This is like one of the Seven Wonders of the World,’ by which they mean that it is not something normal that I survived such an accident, and I am still able to see my family and my kids. So, that was a miracle for me, and I accept it [with all the consequences]” (RSP54, Iraqi, M).
Focus on family roles
There was some gender-related difference in the way participants described their coping mechanisms, particularly when it came to discussing family roles. The idea of “men remaining strong” was communicated by both male and female participants. For instance, I asked one of the male participants, who suffered from an amputation of his right foot, about his ways of coping. His wife spoke up instead: “There is also responsibility: house, children, and their expenses. He should be emotionally and physically strong to be responsible for the family. He had the injury, then would he stay at home and cry for losing a limb? He has expenses and responsibility [to meet]! He should be strong.” The same participant described how he was able to cope with a number of difficulties he encountered in Syria, but when he saw his family living in a refugee camp this made him “lose his mind”: “When I arrived here [in Jordan] and saw that my wife and children were living in a tent, I lost my mind! They were living in a tent and it was cold [winter]. We were living in a normal house before. They were not used to being in a tent. Even during the crisis [in Syria], moving them from one house to another was better” (RSP7, Syrian, M).
I have often heard discourses on men in the Middle Eastern cultural context that claim men do not express their emotions for fear of being perceived as weak. This was in stark contrast to my observation that male participants were open and more than willing to express their emotions. At the same time, it is true that being unable to play the role of family provider certainly created pressure on men, both self-imposed and from the broader society. During interviews men reported constantly switching focus from their own injuries and personal suffering to their role as head of the family.
The family context for both male and female participants, particularly the protective role of parent caring for children and their wellbeing, put the awareness of injuries into a different perspective. A male participant stated: “The human himself is strong. And he’s stronger when his children are around him” (RSP36, Syrian, M). Similarly, an elderly Syrian woman, who had sustained an injury after a bomb hit the well outside her house, commented: “I wasn’t sad. I wasn’t sad even when I got injured. I was conscious; I didn’t pass out. Thank God. The grandchildren were all around me. I told them to go inside. Once they went in, the explosion hit me and I said, “Thank God, it hit me, not anybody else [not the grandchildren] from the family” (RSP34, Syrian, F).
Supportive family environment
It was not only the perception of family roles that influenced the participants. The practical and emotional support provided by family members was of immense importance during and after their rehabilitation. When I observed family dynamics, I saw many warm and affectionate relationships.
Having strong family links, particularly having a good relationship with a spouse, seems to be a strong psychologically protective mechanism. Most participants (both male and female, Syrian and Iraqi) reported that their spouses were extremely supportive of them. One of the husbands whose wife had suffered in an explosion talked about it as follows: “Our love for each other made us continue and be even stronger. We didn’t allow the circumstances to break us, and will never let them do that” (RSP44, Iraqi, F). Another participant talked about her relationship: “No. My injury didn’t affect our relationship [with her husband].” Her husband added: “My relationship with my wife… I love her; she’s my beloved; she’s very dear to me.” She continued: “They even told him to get married with another woman when I travelled for treatment, but he…” Husband [interrupting his wife]: “I refused that” (RSP41, Iraqi, M).
The family safety net (parents, spouses, siblings) was also vital both in providing physical care for patients and in giving them emotional encouragement. Those who were in the hospital without caregivers – that is, without this coping mechanism – were much more frequently overwhelmed by the intense feeling of loneliness and depression: “The most difficult part of my time in the hospital for me was that nobody was around me. No one from my family [was with me]. I was alone. My family was still in Syria. I used to talk to them over the phone and that made me feel depressed. And my father and mother died” (RSP3, Syrian, F). Another patient became aware of these feelings when he observed others supported by their caregivers: “They took me out of the OT. There was another guy [in the OT] and his mother was waiting for him. She started praying for me: ‘May God heal you, my son! May God be with you!’ I started crying. I felt that I had nobody [I felt completely alone]. I can’t forget that feeling and that scene at all” (RSP27, Syrian, M).
Shift in focus from injury to other aspects of life
Some participants completely shifted attention from their injuries to other aspects of their lives. An example was a female participant who throughout the interview attempted to change the topic of discussion to her recent weight gain. She wondered why it had happened. She explained that neither her diet nor lifestyle had changed, and she kept asking advice about losing weight. She reported that her body’s reshaping and her husband’s related negative comments were “her major problem in life.” From the outside, this appeared extreme considering that her family, with four children, was living a nomadic life in a tent and her two sons (the youngest only eleven years old) were working to provide food for the entire group.
Three male Iraqi participants shifted their focus to romantic relationships. In all three cases their love did not result in marriage, but, despite that, they appeared optimistic about their lives and did not seem particularly emotionally affected when they discussed their injuries. When I asked one of them how he coped with missing his family while he was in Amman, he responded: “To be honest, I met a girl there [in Amman], and she was with me and comforting me [smiling]. I met her through a computer institute inside the hospital – so when I was there, I met her in this institute. She was studying there, and I fell in love with her” (RSP55, Iraqi, M). He reported that the girl eventually married somebody else, but they kept in touch. Another participant told of a hospital love story that also did not result in marriage because the families disapproved. But he reported feeling “better” once he had fallen in love, and his sister commented: “When he’s in love, he starts to love life and starts to appreciate the value of life” (RSP74, Iraqi, M).
Another Iraqi participant – already mentioned as coping well with his amputated hand and missing eye – said his “only issue in life was a failing relationship with the girl that he loved”: “I’m in great health. I don’t suffer any disease thanks to God” (RSP61, Iraqi, M).
Struggling to cope
A few participants reported that despite their best efforts they are still not able to cope with their current situation or their memories. This is in line with their reporting on the insufficient psychosocial support they received during their time in the MSF hospital. Here are some of their accounts: “Do you know that I haven’t coped with anything until now? It has been one or two years since I’ve been here [in Jordan]; I could not… Until now, I can’t speak to people” (RSP2, Syrian, F).
Another example was an Iraqi participant who admitted that he was not dealing well with the situation: “I suffered a lot, especially since I keep my sorrow inside of me. I even smoke two packs of cigarettes per day because of the stress; you can see my teeth [all destroyed] because of smoking” (RSP51, Iraqi, M).
Our findings on multiple patients’ adaptive mechanisms are in line with research on survivors of traumatic events and indicate that patients are generally far more resilient than clinical studies and case reports tend to suggest (Bonanno, 2004). Published evidence also proposes that with adequate support and the passing of time most trauma survivors are likely to regain their psychological equilibrium (Becker et al., 1999; Foa, 1997). Building on this understanding allowed us to ask what elements contributed to the resilience of patients in the RSP. The participants communicated multiple adaptive mechanisms that helped them live with their memories and their current situation. Their explanations demonstrated their sense of autonomy and resilience, elements that it is particularly important to acknowledge, since the hospital staff at the RSP too often perceived the patients as victims and passive receivers of help. Ultimately, it is important to study individual adaptive mechanisms to better understand what parts of the RSP MSF could enhance, as well as to contribute ideas to other organizations that support and care for victims of war.
Symbolic meanings and social integration
As we have seen, social interaction is one of the main elements of a good quality of life for patients. Throughout my interviews it was obvious that the participants do not view their bodies purely through the lens of function – the current priority outcome of the RSP. There are symbolic and social meanings attached to their injuries. These meanings are uniquely personal, but what is common is the tendency to associate them with the social relations they experience today, and it is important to fully understand this, a less obvious aspect of the lives of the victims of war.
An injury as a reminder
When discussing how they felt when exposing their injuries in public, Syrian participants in particular reported that other people’s reactions disturbed them. This was predominantly related to questions people would pose; the questions provoked difficult memories. For instance:
I was embarrassed and always used to hide my [deformed] fingers and never show them to anyone. Sometimes when I go out I like to wear gloves [to hide them]. Because if somebody sees the injury, s/he would ask me about it, “What happened and how did it happen?” So, I would remember all the traumatic events that happened to me. Of course, I would not forget what happened. But I would not like to think and talk about it all the time. It’s difficult to talk about it. It’s a feeling that I wouldn’t like people to have. (RSP1, Syrian, F)
Another participant, who reported wearing gloves in public to hide her injured hand, felt similarly: “There are people who would have a look of sympathy [seeing my hands], and other people would ask, ‘Why? From what? How?’ And you would need to repeat the same [story over and over again]” (RSP21, Syrian, F).
Negative comments are a reminder of a life lost. A burn victim who otherwise led a successful professional life explained: “I am otherwise content, but it’s the way that others look at you, or sometimes having to hear their painful comments. That’s what really gets you down and reminds you of the life you lost: your home, your husband, your family, your health, your beauty, your youth. I mean I lost all of that years ago, at the peak of my youth” (RSP73, Iraqi, F).
And it was not only the comments they received. It was also the case that looking at their own injuries provoked memories. “No, in the beginning, whenever I looked at my legs, I felt emotionally tired. I couldn’t look at the wound. I was afraid” (RSP7, Syrian, M). “When something strange [a foreign body, like shrapnel] gets into one’s body, he suffers a lot. All the events that happened with that person are [stored in those wounds] like a disease. He remembers how his life was and how it has become. And how he suffers from that. This creates difficulty for him” (RSP9, Syrian, M).
But sometimes there was an active attempt to memorialize events. I have already mentioned a father who showed us the metal plate, nails, and bone screws that were taken out of his son’s leg and stored in a plastic bag in their home. When he showed me these objects he commented, “These are to remember… These are like souvenirs” (RSP12, Syrian, M).
Family and social pressure
Many participants felt affected by the “looks of sympathy” they received in their social environment, and some reported how much these looks “hurt them”: “It’s from my personal experience: when you lack a certain aspect of your health and this is apparent to others, such as a disability in a certain part of your body, the way that others look at you REALLY HURTS, really gets to you and emotionally affects you” (RSP71, Iraqi, M). Participants were also clear that they did not want to be labelled “disabled.” One explained:
Some comments [people] don’t mean to belittle you, like they try to show some compassion, but they don’t actually know that this hurts! Like the word “disabled”! Like, for example, if I’m doing something and someone says “Don’t let him do it: he cannot do it; he’s disabled,” this hurts my feeling even if they didn’t mean it. It hurts, and I hate the word “disabled,” especially knowing that I was a physically active person who couldn’t stay still in one place before [I was always doing something]. (RSP58, Iraqi, M)
To avoid dealing with her husband’s family, with whom she lives, one of the Iraqi participants adopted a strategy to completely hide her leg amputation. She arrived for the interview wearing a long skirt and crutches and moved relatively naturally, so that nobody would notice anything amiss. She commented: “Nobody knows about the amputation issue, except my family, and my husband. The wife of my brother-in-law, she’s not a respectful woman. If she knew about my injury, she would hurt my feelings” (RSP41, Iraqi, F).
Social pressure exists in many forms. One of the female patients, a burn victim, reported that she constantly suffered pressure to “lower her expectations in life,” and that this was said particularly in reference to choosing a life partner. She had been married and had divorced. She reflected:
Everybody likes my ideas, morals, and everything. But everything stops when it comes to the burns. What most destroys me isn’t the burns [on my body]: what destroys me is the people who are around me [my family] and the ones that I know [who comment on me]. [To the researcher] I’m a girl and you are a girl. Because I’m burnt, don’t I have the right to have what you have? Your future is [supposed to be] different from mine? Your life, what you ask for [in life], I can’t ask for it? I should be patient. I should live with anyone [even if I don’t think they are good for me]. This is what kills me. Sometimes, I wonder if it’s really me – that I’m wrong and the rest of the people are right. I’m a human being. I have the right to have my brother take care of me. I have the right to get married like any girl. I have the right to have a complete man who lets me live in a house and spends [money] on me. I have the right to eat, drink, and dress up. They [her family and other people] say, “No! Not you! Why don’t you accept the minimum?” (RSP15, Syrian, F)
Family life was severely compromised for some participants. Four of them reported getting divorced because their spouses could not cope with their physical condition. One of the participants, who was limping due to a shortening of one leg, told me that he got divorced because his “ex-wife when she saw my injuries started negatively commenting on them and making me feel embarrassed” (RSP9, Syrian, M). This participant appeared cheerful and in control of his life. Hence, participants who are otherwise successful in dealing with their personal situation can suffer rejection at the hands of their social network.
Lost sense of manhood, womanhood
Perception of their bodies also influenced how participants felt about their masculinity or femininity. This topic caused obvious emotional distress for both male and female participants. One participant was severely embarrassed about using crutches. He commented that his appearance on crutches directly reflected on his masculinity and this had an emotional impact on him:
I felt I was a disabled human. I was still disabled. You know better [than me], when you look at a man with crutches, [you know] things won’t work out for him. When I was walking with the crutches the human being [myself] was a quarter of a man. I was with crutches; how do you imagine I was like? My emotional state is different now [after I started walking normally]. It has changed now. I’m a 100% good [real] man. (RSP13, Syrian, M)
Another participant felt similarly, remarking that when he lost his fitness, he lost his sense of masculinity. He had a sense that he had become “only half human”: “My situation was unstable; I felt like I was a half human [after the injury]. I was helpless. I wasn’t able to move normally like I used to. I used to [before the injury] carry heavy objects on my back, like an air conditioner [a sign of physical strength and masculinity]. But then I was not able to lift anything [any more]” (RSP68, Iraqi, M).
The lack of facial hair also compromised the confidence of a young male participant, who was injured in an explosion as a child. His father commented on the difficulties related to his appearance: “Of course, he was emotionally hurt [after the injury]. He is still like this, and I don’t like to say this in front of him. He feels bad when he sees other men grow beards, and you know how young men think. He also grew a moustache before, but as you can see there is no hair growing here now [points to the moustache area]” (RSP43, Iraqi, M).
For female participants, having scars was directly linked to notions of being “feminine and beautiful.” This was ultimately related to their marriage opportunities and to the idea that “there is no future.” One of them started crying when I enquired about the way in which she lives with her injury. Her father responded for her:
As a young girl, she aspired to get married and establish a family. The injury has left scars, which make her feel insecure. Generally, she cannot live normally and be seen by other people. She lacks self-confidence and she feels she is lacking a good appearance. And this is something normal for girls at her age. Young ladies wish to get married and start a family. This element, a good appearance, is missing in her life. She cannot be [socialize] with other people. And you know currently people judge by appearance. I’m not getting into the details but, generally speaking, I know how she feels: she feels that there are missing things in her face and hand. So, she aspires to improve her looks and be normal once again – nothing more, nothing less. (RSP66, Iraqi, M)
Not being “feminine enough to have a future” was described by another young Iraqi woman, who, as a child, suffered from burns over her torso and neck. She commented: “It [the burns] affects everything in my life; it even affects my future. Sometimes I think I have no future.” Her sister explained how the participant’s marriage opportunities were close to non-existent:
When someone comes to court her, and he hears about her injuries, he changes his mind. This is how things are in Iraq. Men think like this: women should always be beautiful and perfect, otherwise they will shame her and make her feel insecure. Only her face looks normal, but everything else is deformed – who [which man] can accept that? Men, they don’t accept the fact that she has burn scars on her body. And she always cries because of that! (RSP50, Iraqi, F)
Another female participant felt that divorce following her accident was inevitable after her “beauty was compromised”: “I wasn’t like this [before], you know [participant pulls out her personal ID and shows us a picture of herself before the injury]. When he [my husband] saw that I was deformed, he left me, right after the accident. We became separated. I accepted that. Because I was deformed, so I accepted the fact. And though we have four children, he just left us, without alimony [an allowance support]” (RSP73, Iraqi, F).
Contrary to this, a very supportive husband talked on his wife’s behalf when she cried while reflecting on the impact of the injury on her sense of femininity. He confirmed how the challenges brought him closer to his wife. At the same time, he understood his wife’s’ emotional struggle:
That was the period [after the injury] that made us close to each other the most. The problem she suffered was emotional also because she felt something is missing – and you know when someone undergoes such difficulties, she develops some self-esteem issues. All that caused problems [insecurities] for her as a woman, and she was asking me always, “What do I mean to you?” and “I’m not attractive anymore” – you know, all these problems, especially because for women the most important thing is their beauty and femininity. These things are like complimentary issues for them, and losing beauty and femininity causes problems for them. She suffered a lot. (RSP44, Iraqi, F)
Association of scars with deviant behaviour
Male participants with facial scars were similarly affected; they were extremely aware of their scars. They described the impact, even if, from the observers’ perspective, their scars were not obvious. They strongly believed that their scars made them seem in some way deviant in the eyes of others. One of them, who suffered after an explosion, had a superficial scar, a dark patch under one of his eyes about five centimetres long. If he hadn’t talked about it I would have barely noticed it, and my assistant confirmed my feeling. The participant said: “I feel that I lack something and that I’m not good. When people look at me, they don’t say anything. But I feel that there’s something [on their mind]. When they look at me, it’s like [they notice] there’s something on my face. They think that this person is a troublemaker or a criminal or someone [dangerous] like that” (RSP14, Syrian, M).
Another participant’s face was severely damaged by gunshot. His lower jaw was damaged, but reconstructive surgery resulted in natural-looking features, including the growth of facial hair. There was a thin, about ten-centimetres-long scar running across the side of the jaw. He reported that his appearance caused him immense suffering: “I suffer from the injury. I am asked many questions. People think it’s because I was cut with a knife in a fight. They think that any person who has a scar in the face has done bad things or is a troublemaker. You might be with a person whom you meet for the first time – he would think badly of you” (RSP22, Syrian, M).
Severe social anxiety
It was obvious that more severe facial deformities completely dominated a participant’s life. Most participants with facial deformities reported living in complete social isolation and “never leaving the house.” Younger participants, those injured as children, suffered particularly in this way. “Because of the external appearance, I cannot go out with my friends; I cannot go out of my house. Your face is your outlook; I even have injuries on the rest of my body, but these are kind of covered [with clothes], and the burns on the body don’t have the same impact [on my social life] as the deformed face” (RSP48, Iraqi, M). His father reported that his son had left his education due to the negative comments he received: “In fact, when he got a little better, we let him go to school, but, you know, kids at school were calling him names and making comments, and he was so annoyed he left the school again.”
Meeting one of the young male participants left a strong impression on me. He currently lives with his parents in Baghdad and suffers from severe social anxiety. His mother told me that he usually refuses to see visitors but made an exception for us. His statement that if he could, he would “erase his life [finish it]” was an indication that he had reached a deep level of depression and despair. From his intelligent and insightful answers, it was obvious that he reflects daily on his situation. His poor self-esteem and self-perception of weakness were related to his lack of constructive social interaction:
There is no issue with my health except the visual appearance. Whenever I go out, I hear people say comments, and I ignore them and act like I didn’t hear them. Weak people [like me] don’t answer [to provocations]: they choose solitude. I haven’t left the house since I came back from Amman in 2013. I don’t go out except for going to the shop to buy things I need – and I go back home and stay alone. I never meet anybody [out of my house]. (RSP56, Iraqi, M)
This patient also said that he feels a lack of safety, a feeling that began the moment his injury occurred in childhood.
All these participants considered that the condition of their faces gave them no other option than to live in social isolation. Their only idea of a way to improve the situation was to improve the appearance of their faces.
The importance of lost limbs
For patients who lost a limb during their injury or who underwent amputation, the lost limb was associated with a complex mix of emotional and socio-religious meanings. It was extremely important for them to know if the remains of their limb were preserved after amputation and to know where they were located. They also wanted to know that burial of the limb would follow Islamic tradition.
One of them (RSP16) mentioned how essential it had been for him to locate his missing leg right after the explosion, but how he had worried that those efforts would cause more casualties: “I was encouraging others to take me away [right after explosion] even if there was no leg, so that a big number of people would not be hit again [while searching for it].” They took him to Jordan, and he was in a coma for days. Once he woke up, his question was “Did the leg really come with me here?” As proof, they showed him a video which was taken in the Mafraq hospital in Jordan – his “leg was still there” – but, as he explained, it was later fully amputated in the Islamic hospital in Amman. Another participant (RSP69, Iraqi, M), who was injured in a car accident, explained that both of his legs were amputated, but he added, “Actually, one of my legs couldn’t be found [after the accident].”
One of the participants (RSP16) explained the proper procedure for burying an amputated leg. By Islamic tradition, it is supposed to be washed, wrapped in white cloth, and buried. At the RSP, this tradition and associated legal procedures are followed and documented, and burial of the amputated limbs takes place at an Islamic cemetery. Participants’ comments indicate that there is a strong emotional and symbolic meaning attached to amputated limbs. Sufficient communication with patients about the procedures involved in disposing of them was an essential part of easing their grief.
Taking pride in their disabled body
“Disability is in the mind, not in the body and looks” was a statement made by one of the participants. In his eyes, being morally right (being on the repressed side in the war) and having taken action to save others while sustaining his own injury seemed to be immensely important. Today he lives optimistically but with a permanent limp. He is an example of somebody who does not describe their injury as a symbol of disability, but rather as a sign of heroism, and that makes him proud.This attitude is in conflict with the commonly expressed opinion of staff at the RSP, who perceive patients as victims. Some other participants took a similar outlook on their situation.
We met one participant in the countryside of northern Jordan. He met us near his car along the main road and then directed us to the simple house where he resides today with his wife and children. It was only after he exited the car that I noticed his amputated leg. He moved very confidently with the support of one crutch. He had an air of strength, pride, and charisma. He spoke with full self-confidence and appeared emotionally stable. This participant (RSP16, Syrian, M) reported being injured while “trying to help a man whom he knew from the village and whose car was hit by a missile.” During the interview he emphasized that “he was not injured by any military operation, but while helping others.” When I enquired about his disability he stated, “I have no physical disability; my disability is only financial.”
We met a participant with a similar attitude in his rented apartment in Amman. He started his narrative by telling us how he was rescuing people when his injury occurred: “There were people whose houses were hit by bombs. We wanted to help them, to take the little children from under the ruins.” He explained the way he looked at his body today: “It’s a disability. I will have it till I die. I have a disability that I am not ashamed of, but proud of. It was an honour for me to take people from under the ruins” (RSP9, Syrian, M). Unlike many other participants, he did not report being embarrassed by limping in public. He looked cheerful, was articulate, and emotionally stable, and this despite reporting on (and showing us a video) of his friend who was hit by shrapnel and died on the spot during the same event.
Injury as a sense of empowerment
Some participants took a completely different approach to their injuries. They interpreted them as a source that enabled them to gain elements in life that would otherwise be missing. One, for example, was not bothered by the “merciful looks” he received in public when he walked with crutches. He was pleased to comment that, on occasion, walking with crutches would get him a free lift: “Sometimes when I walk, someone would let me get into his car [to give me a ride], and sometimes they don’t let me pay” (RSP11, Syrian, M).
Another participant was convinced that with the “right type of injury” one could leave Jordan and emigrate more easily: “I said the truth [to UNHCR], ‘I’m a man who was shot by a bullet.’ My brother came here [to Jordan] after me and told them [UNHCR] he was injured by shrapnel, and he’s in America now. I told them I was injured by a bullet and therefore I am still here” (RSP13, Syrian, M).
A father who spent long periods of time at home in a wheelchair after his injury appreciated the opportunity to be with his children. He saw a clear advantage compared to other fathers. He warmly described this:
Especially for us Iraqis, we can’t be away from our children for a long time. In addition to that, I was so attached to them because since 2009 I had stayed at home with them. I was watching over them and studying and playing with them. So, I got attached and connected to them, probably more than the fathers who leave early in the morning for their jobs, like at 7am and come back home at 12am and then go straight to bed. But for me I wake up at seven in the morning and wait for them to come back from school at 12pm so I can play with them. So, we became attached and connected to each other. (RSP69, Iraqi, M)
A damaged face was interpreted as a means to make a political statement by a participant who was shot by an American soldier. He described this as follows:
It’s a big difference when you see someone who looks normal or semi normal and one who has a completely damaged face [like me], especially for people who don’t know me. At the same time, this [pointing at his face] was a message to show to the rest of the world what the US Army did to our country and the people of our country. I don’t want that people around the world look with admiration to the Americans or say they are good people. All they did was to cause us pain. (RSP71, Iraqi, M)
In sum, the participants reported differing degrees of quality in the lives they lead today. To a large extent their quality of life was associated with the improvements resulting from treatment at the RSP. Still, each of them employed an individual approach to managing adversity, and each one dealt with their injured bodies and their task of reintegrating into society in a decidedly unique way.