Note: To follow the story it is recommended that you first read the previous parts, or from part 2 and forward, where several of the characters mentioned are introduced.
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-The night following his visit to my moms house where his breathing and his attempts to cough became more and more difficult, Ajje was put on the ventilator for the first time.
I knew that he had been trying out different masks, and we had talked about it briefly but he had never needed to use the ventilator before. It’s our first big scare, but it turns out to be a significant improvement.
-While Ajje seems calm about it, it takes me several days to relax and calm down. But when I understand that it’s not my fault, -and that his parents are not going to stop me from seeing him like Patriks parents did; I’m able to put some of my fears aside.
His doctor; Anders, has a few conditions for us if we want to spend time together, but we are prepared to agree to anything:
-If we leave the nursing home, we need to have his parents or one of his grownup relatives with us.
-If we go out to the park, we need to tell the nurses so that they can come and check on us every hour or so.
-I can’t leave him alone when we are outside, and finally, I have to make sure that he eats, because his low weight is a real issue.
-On Nanos initiative and with his help, I have a long conversation with Ajje’s parents. I tell them about myself, about my parents and siblings, and even about our friend Patriks time in hospital and that we lost him, -and they explain something to me that changes everything:
I am not responsible. They are responsible for Ajje. I’m just a teen, a kid really. It’s been so long since I’ve had the support of grownups, and it’s so unexpected.
I felt responsible for Patrik because he only had me, Nano, Jon and Rick; and for Rick, when he fell apart and turned to me. But I’m not. I’m just me, and I don’t need to feel responsible for Ajje -not alone. He has so many family members and friends who cares about him.
They confess to finding it a little strange at first, that a Swedish, christian girl would want to be friends with their son; but they are happy that he has company when they are not there to visit him, especially now when he is not in school.
One week later, I lie down next to him in the grass in a sunny corner of the park. He is lying on the edge of a blanket and I have rolled up some towels and placed them under his neck, and another towel is placed between his knees. This way, he can lie under the sun and slowly run his fingers through the grass.
-We've learned the hard way that him resting on the blanket with his head in my lap is a bad idea because his neck and upper back was hurting afterwards. So, we are trying something different.
The sun is warm but there is still a breeze and I’ve pulled a thin blanket up to his waist.
The sun is warm but there is still a breeze and I’ve pulled a thin blanket up to his waist.
We have already made plans for the rest of the summer:
-On wednesday, we are going to the open air concert in Edsviken, and then we are going to celebrate midsummer with both of our families at my stepfathers parent’s summer house.
In july, we will help Nano move, in theory.
-And cake, we are going to eat lots and lots of cream and cake so that he can gain some much needed weight.
I’m trying to read yet another fantasy book; the chronicles of Thomas Covenant, but I notice that Ajje is watching me over the book cover.
“-I thought you liked my stories better”, he says bored.
I take his hand and I play with my fingers over his palm, then I run them on top of his hand and wrist. I stop before the bend of his arm, where he still has a big purple bruise from drawing blood for a test following the ventilator usage a few days earlier.
I could lie there and look into those big golden eyes forever, but right now he has that focused, demanding look, and I lean forward for a kiss.
I put down the book, move closer, say his name out loud and smile:
“-Ajar Ahmed Jewan, what kind of story do you have in mind?”
Even though I can’t pronounce it correctly, -It sounds more like Ayhaar, -I still love saying his actual name and not always call him by his swedish nickname.
“-One about Mom and dad.” he responds, and I know that he finally wants to tell me about how and why they came to Sweden. I’ve heard parts of it before, but not the full story.
"-My grandpa was a builder, and he traveled all around Kurdistan -it was still safe to travel then; -but they settled down close to Amed -you call it Diyarbakir now; when mom’s two brothers were seven and eight years old. Her eldest brother died before she was born. He might have had DMD, but there is no way to find out for sure.
Her other brother died only four years ago. He was just old. He had five sons, and they all live here in Sweden. -I think that you have met three of them, the others live in Norrköping.”
“-You need to understand that the kurdish people were never welcome in Turkey.
-But when mom was ten years old, there was a coup, and the military took over. She was no longer allowed to go to school, and from then on, they were not allowed to call themselves kurds or speak their own language. My grandpa taught her how to read and write in both turkish and kurdish in secret, but he made sure that they only spoke kurdish in their home.
They had to move all the time to where there was work and where they would not be harassed.”
“-Dad was also a famous and respected builder, and he had worked on several locations with grandpa. Grandpa knew that if dad married mom, their family's reputation and situation would improve, and she would be taken care of. Dad had to pretend that he did not support the kurds and he was allowed to work even when other kurds weren't, but it was difficult for them when the economy turned bad."
I smile to myself because I know that they also married out of love, even if there is a big age difference between them: Ajjes father is 62 but his mother is only 45. He also has the biggest hands I've ever seen, perfect for a builder. His hands might be rough but his handshake is gentle.
"-They had a son. They named him Karwan."
I sharpen my senses and squeeze Ajje’s hand for a second: -Who? He doesn't have a brother called Karwan?
“-Shortly after that, they had another son, and they named him Ahmed after our dad.
Mom and grandma saw that Ahmed developed a lot faster than Karwan, and mom tried to find a doctor that would see them. They had money, but they still had to travel to a different city to find a doctor. But he couldn’t give our parents any medicines for Karwan. Then I was born and mom understood that I had the same problems as Karwan."
“-Dad had four brothers, two of them got involved in politics, and the harassments against us increased. Mom could not go outside for long periods, it wasn't safe. -Some people were saying that dad did not support the kurds, and others were angry because grandpa had been traveling to and from Iraq and other places. My cousins started talking about moving to Sweden like one of their friends, and they said that there were jobs here too. "
"-Dad was very determined. He wanted the kurdish people to be free but not with violence,
but there were a lot of people who did not agree with him. Mom was always sad and very quiet and Karwan got sicker and sicker. He couldn’t walk anymore and she had to carry him, and we couldn't leave the apartment that we lived in. It was not the best neighborhood, but we could go out on the yard sometimes with other kids, or we could go to the mosque. Mom told me once that they took us all the way to the grand mosque, that people tried to help us, and that some days, even the turkish policemen would leave us alone because they knew that Karwan was sick. But she never knew what would happen and she was always scared. -She doesn’t like to talk about it. We had most of the things we needed; food, clothes and even toys but we had nothing because we were not free. And we had no medicine. All Karwan could do was lie on our sofa until he couldn’t talk, eat, or breathe."
"-Dad sent me and Ahmed to a lady who lived in the room above us for a few days, but we knew that Karwan had died and that he would not be at home with us any more.”
I hear how his speech slows down between his breaths, he rolls his tongue once or twice and now he raises his eyebrow as a sign that he needs to get up; so I get up, wipe my tears away and hastily lift him back into his wheelchair. Instead of turning around to go inside, he sits there motionless, and I wrap my arms around him.
"-I'm so so sorry, -I don’t know what to say. I can not picture your family being forced to live that way and always being scared. I’m sorry that your family and your brother had to go through this. I'm so glad that you are here now.”
After a while he says:
“-Carolina, there are so many things that I want to tell you. I want you to know everything, but sometimes it is difficult to talk.”
I know that he often has to simplify what he wants to say or use his gestures, that unnecessary words require energy that he doesn’t always have. I know that becoming upset makes his breathing more difficult too. We go inside, and one of the nursing aides comes to help him lie down in his bed before he continues the story.
“-What was Karwan like?” I ask.
“-I don’t remember a lot about him. He was always there with us, but he didn’t play with us, and he didn’t talk much.
-Ahmed was a good big brother to me, he helped mom a lot, and so did our neighbours. When I stopped walking, I was scared that I would become just as sick as Karwan.
-Mom tried to convince dad that we had to leave, because I had to see a doctor and get help. But it was very difficult and it was not until Aram was born and they understood that he was sick too that we could leave. By then, it was like a war between the turkish and the PKK and it was impossible for us to stay."
"-Because the war in Iraq was starting, a lot of kurds fled to Turkey, but they had no rights and it was becoming very dangerous. There were more and more attacks by the turkish military. When we left, I had not been walking for two and a half years, but I didn't even have a wheelchair. If mom or dad helped me get up from the floor and held me I could still sort of stand but I couldn't walk."
“-But why did Ahmed not come with you?"
"-He had started his own family; he was already married.
We stayed close to a month in Lebanon and then we could finally fly to Sweden. We were only allowed to cross because they could see that me and Aram were sick."
“-What happened when you came to Sweden? I mean where did you live, did you have to go to one of those camps?” I ask.
"-A lady at the migration office on Arlanda Airport sent me and Aram to the hospital right away. There was a doctor who spoke turkish, and he did some test and said that we had Duchenne, and that we could borrow a manual wheelchair from his office until we could see the neurologist. I remember it very well, and we were very grateful for this wheelchair, but because of my bad back, I could not even sit in the wheelchair properly.
-The first doctor did not understand how sick I was, but for the next six months we lived at the hospital.
Mom was shocked because she had hoped that if we only came to Sweden, there would be a cure. I missed my home and my friends badly but mom and dad tried to explain why we had to be here, but I knew that I was not getting better like everyone had told me that I would.
It was horrible, because almost no one spoke turkish or kurdish. Aram had surgery for his feet, but they told mom and dad that it wouldn’t help me, and I was angry about that. Then there was a lady from the church who came to the hospital to teach us Swedish.
As soon as we were told that we could stay and live here, we were sent to a real school for immigrants.”
“-We rented a small apartment but dad could not find a job so it was very difficult. Mom was happy to be with some of her relatives here but she was very lonely, and we could only sit and watch the news on TV when the war broke out. But after only a few years, almost our entire family was here in Stockholm, except for one of dads brothers, and Ahmed.
They gave me an electric wheelchair that I could use and then eventually I could start school."
"-So you were about ten years old when you first had a wheelchair?, and when you first started school?" I recall.
"-A wheelchair that I could use myself, yes. Before that, mom had to push me in a manual chair, or carry me." he says as if there is nothing remarkable about that.
“-I was first placed in class with kids that were a few years younger than me. I knew the letters because my parents had taught me, so I learned to write fast. I could still hold a pen.
Then I went to a school with only disabled students, and we had carers helping us in class.
I liked school a lot until the first time I got sick.”
He asks for another break, and then he makes me promise not to ask his parents about his brother or about how they came to sweden.
“-My dad forgets things. I don’t want him to be reminded of Karwan because it might confuse him.” He hesitates but continues:
“-He forgets to give us medicine, and he forgets things that mom tells him, like appointments that we have with with doctors or our lawyer.
-There is no other option than my brother living with us. We need him here. Without him, we have nothing, we are not a family without him.
-If he can’t stay, nobody will help mom. She can’t take care of dad, Aram and me."
I step up from my chair and lean forward and hug him again, and to my shoulder he says:
"-I want to go home Carolina. But what if I’m not sick enough?, then maybe the Migration Board will not listen to our appeal. So I can’t get better, and I can’t go back home, not until they have considered the appeal.”
Right then one of the nurses interrupts us from the door, asking if everything is ok.
I think about what his parents said to me about responsibility, but it’s difficult when his bad health is the one thing that might keep his family together.
Just like I dreaded the six month mark of Patriks death, I wasn’t sure if I could handle going back to Edsviken. But when Jon confirmed that he was going to arrange the festival together with one of the local non violence organisations, I had to say yes when he asked for help.
I wake up tense and excited on the day of the festival, not sure what to expect. I take the bus down to the nursing home where Nano is waiting, and Ajje is awake but not up or dressed.
“-Hey“ he whispers.
“-I will be there around four.” he says.
“-I know. I’ll see you later. Don’t stress.”.
Jon picks us up, and it feels right that it will be just the three of us before all the craziness starts.
I still take a deep breath as the car rolls up in front of Patrik’s old house. -His parents have moved to Brussels and the house is sold, but still empty. Looking up at the house I feel like someone has punched me in the stomach.
If Nano hadn’t asked for help with getting his wheelchair out I would probably have ran off and vomited.
“-I still don’t understand how she could do that to him”. I say dizzy on shaky spaghetti legs.
I’m tempted to go around the back to look up at Patriks window, but the guys stop me. Jon is already on his way and I hold on to Nanos wheelchair as we go down the slope to the stage area. The stage is already completed and there are a few barracks, one for electricity, one for the catering and so on. Nano starts calling people in and checking attendance, and Jon walks with me and points out where he wants the food trucks to be and where he wants the crew to park. Then we wait, and by eleven the place is busy with people running all over. There are a bunch of people from the organisation that are receiving the sponsor money, the cleaning crew, and even the police. -I remember Rick, how excited he was, and the energy and excitement of all these people around me is contagious. After all the food trucks have arrived and have been set up, we pull out the benches from the back of a trailer and rise the huge tent backstage. When the bands arrive for their soundchecks, I’m glad that I’m too busy to think about everything that went on last year.
We gather for a late lunch, and Nano and I take a breather sitting on the short side of one of the long benches, looking out over all the people.
“-You know, they are all here for Patrik.” he says.
“-Patrik and you”. I remind him. And the music, I want to add but it doesn't seem appropriate.
“-Yeah. I was asked if I wanted to go on stage and say something about the assault. They said it would make an impact.”.
“-What did you say? You didn’t say yes, did you?” I ask in doubt.
“-I told them I needed to think about it, but when I explained that my legs weren't amputated as a result of the assault, they lost interest”.
I look down at his scarred hands and say:
“-What exactly did they think they did to you?”
He snickers in agreement and I continue:
“-I guess it would be a nice thing if someone said something about Patrik and Rick. I don’t know,.. the festival would never have happened without them. How many years did their family help arrange it?
“-Four years I think”.
“-It was their father's money.” I remind us and then I smile a little:
“-We have been going here every year: -I wonder if I ever saw Patrik here or if he saw me.
I wonder what it would be like if we had met sooner.”
Nano picks up his beer and we raise our glasses.
“-What are we toasting for now?” I ask.
“-It’s exactly one year since Patrik brought you here and introduced you to us. A very shy girl, but Rickard was so sure that you would be good for Patrik.”
“-It really has been a year.” I smile in agreement.
“-So here’s a toast to our friendship, and for a better, happier, healthier year.” he says.
When Ajje’s van pulls up, it’s packed with people. He has brought two of his cousins and the two nurses who were asked to volunteer at the festival. Jon shows the nurses around and I’m grateful that Nano takes off with the two girls so that we can finally be alone.
“-How was your day so far?” he asks as he is trying to catch my hand in his.
“-I’m exhausted. There is too much people here.” I say.
“-Kissing me would make you feel better.” he says as a matter of fact and smiles.
“-Yes. But…” I don’t know how to put it. “-Not here.”
I turn around and he follows me, and we face the big empty house.
“-Is this where Patrik lived?” he asks, unsure of what he is looking at.
“-No. This is where he died."
He knows that he doesn’t have to say anything, and I don’t need to explain.
In silence we follow the road down to where he can best cross the grass to reach the backstage area, just in time to see four men lift Nano up on the stage.
“-What is he doing?” Ajje asks.
“-No idea - he said he wasn’t going to go on stage. I want to show you around. We can take the walkway around the water, or are there any bands that you want to meet?
“-I will just follow you." He replies.
So we walk slowly along the water and I show him the different views of the lake and we even spot some of the rare birds. I’ve walked here so many times that I know every rock and every tree. Most of the flowers has already bloomed, but the park is still beautiful.
-When we take a break at one of the bird feeding areas, we suddenly hear a loud hiss and a huge white swan starts chasing Ajje’s wheelchair, probably to protect it's chicks, and we both laugh out loud and I have to run to keep up with him as he drives off. When I have to stop to catch my breath, I wrap my arms around him and we hug for a long time.
It feels good to be alone with Ajje for once without his family or nurses around, but when I'm walking next to him like this we can't even hold hands, and I long to be close to him.
We walk back through the park, the first band has already started playing and we are late, but it doesn't matter. We go backstage and I get us some food and drinks, but there's not a lot of the food there that he can eat and he asks me to get a shake from the van instead. So true to my promise not to leave him alone when we are out, I leave him there with Tess.
When I walk back from the van I see Christine walking towards me. I guessed that the girls would be here, but I wasn’t sure if I wanted to run into any of them.
She is so beautiful, she is wearing makeup and a pretty white summer dress and she looks well, but it makes me feel like a real slob since I haven't even changed out of my work clothes.
She says “Hi”, and I reply “Hi” just as awkwardly.
She approaches me and after a short silence we talk for a bit, about the weather and the concert -all neutral things.
“-So look,.. can I…” she doesn’t finish the sentence.
“-You want to meet the bands?” I ask, trying not to sound cold.
“ -What, no?” she says and I know that I've jumped to conclusions.
“-Can I meet him?” she says.
I’m surprised, and my defensive mood fades.
“-You really,.. -You want to meet Ajje?”
“-I saw you walking back from the water. Is he..? How is he? -He is really thin isn't he? How old is he? Where does he live?"
Even though the first time I tried to tell the girls about Ajje was a total disaster (when they in a chorus tried to explain to me why I couldn’t date a “poor disabled refugee”), my resistance fades when it's just Christine and me.
-I want to snap at her, I want to remain angry, I want to tell her that she would have known the answers to these questions, had she only listened to me before:
-But I can't. I know that I would be wrong. She is my best friend, and god have I missed her.
She still has that concerned look on her face. The "Carolina what have you gotten yourself into?"-look.
She knows that he has Duchenne, I'm also standing there with a blanket and his protein shake in my hand and I can see her doing the math: -Counting what stage he must be in and coming to the same conclusion that I struggled with that day when Ajje asked me if I would still be his friend.
-That Ajje would leave me, not if, but when, and that my world would fall apart all over again like with Patrik. And that I choose him, knowingly.
I know that we are mirroring each other where we stand nervously playing with our hairs.
I snap out of it when realise that she is expecting a reply:
"-Are you here alone or is Jimmy with you?" I ask.
"- Jimmy is here, and the girls too."
"-Have you eaten? Why don't you go and get him and I'll meet you at the backstage entrance."
I've already told Ajje that the girls might be at festival, so he is not too surprised when I tell him that Christine and Jimmy will join us. I’m glad that Jimmy and Ajje seem to find each other right
away because Jimmy is usually really quiet. It turns out that he is in the same school that Ajje just graduated from. We introduce them to everyone, of course they have met Nano and Jon before, but eventually it’s just us sitting together at our table and that’s ok. We chat the evening away listening to the music, the atmosphere is great and like Christine says, this way we can avoid all those drunk teens in the crowd.
Jimmy has to leave first, and I can tell that Ajje is becoming too tired. He stirs and asks for the time and I know that he is getting ready to leave but that he doesn’t want our evening to end.
Suddenly Jon comes over and motions us towards the exit of the fenced backstage area and says:
"-You all have to see this, come with me in front of the stage."
I'm not that interested in the last band, but we do as he asks since people are leaving anyway.
When we come around, and I hear the first notes of Lightning crashes, I freeze in my step and Jon who is right behind me squeezes my shoulders.
Nano is on stage, singing with the bands musicians and with Tess, Linn and Ajje’s cousins accompanying him.
“-Yeah” Jon fills in.
I look over at Ajje:
“-It was his idea.” Jon reveals.
“I didn’t know he could sing. I had no idea.”
Before the song is over I’m in tears, it’s Patriks favorite song from last year and it doesn’t help that his next song is Lilla fågel blå, and I have to sit down in the grass next to Ajje.
Then the girls sing Tears in heaven alone while the rest of the band members enter the stage. When Nano together with band starts singing Frank by Kent, most of the crowd sings with them.
I’m filled with this devastating sadness because Patrik is not here to experience it, but most of all I’m so grateful for Ajje, Nano, Jon, Christine and everyone.
When Nano comes down I hug him until he becomes too embarrassed, and then I take Ajje aside to thank him.
“-It was not easy to keep it from you.” he smiles tiredly but his eyes are shining and the way he looks at me fills me with such warmth.
“-And they had to practice when you weren’t there.”.
“-Oh... Oh!.” I blush when I think about how much time I spend with Ajje in Nanos and his room. We’ve both agree that it’s nice to be alone without nurses and family but maybe Nano deserves some more time to himself as well.
Ajje’s ride and the girls are waiting, and me and Christine share a taxi home, but I’m too overwhelmed and tired to maintain any conversation.
It’s only a few days until midsummer and it looks like all our planning will go to waste.
On the Tuesday after the festival, the police arrive at our door with my little brother and our step brother. They have been caught trying to steal or shoplift items at the local mall, and mom and stepdad are very upset.
Ajje has spent a few days at home with his family but has slept each night at the nursing home and he is very excited over this but he is also very tired. He says that he doesn’t feel sick, just tired, but he ends up spending eight days in bed. I celebrate midsummer at home with mom and stepdad at our house but the rest of the weekend I spend as much time as I can with him.
On the 7th of July Nano finally moves into his new apartment in the city and just two weeks later his brother comes to visit him from Turkey.
I can tell that Ajje is upset over Nano leaving because now he will be alone at the nursing home. But when he has a chance to meet someone who has just came from Diyarbakir, he is all enthused and excited he asks him a million and one questions. He seems so revitalized and happy.
That evening when he again talks about how badly he wants to go home, it’s the first time that I’m not sure if he means that he wants to go to his parents apartment in southern Stockholm, or if he in fact wants to go back to Turkey.
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