Intense Longing

Jul 4, 2021


I spent part of last week reading a really phenomenal graphic novel called, When Stars are Scattered. It is based on the true experience of Omar Mohamed and his brother in a refugee camp in Kenya. They were born in Somalia but had to flee from it when they were still quite young. Their father was killed, and they were separated from their mother, so at four years old, Omar became the protector and provider for his brother. 

I usually think of a refugee camp as being temporary, a kind of stepping stone towards resettlement. But for Omar and Hassan, and most of the other residents in Dadaab, "temporary" turns into a lifetime . . . or at least their entire childhoods. The days exude a strained monotony: limited food, no resources, lack of progression. It is demoralizing. Many of the people obsess over getting out. It's all they can think about. 

Omar says there is a word for this "intense longing to be resettled." It is buufis. He says, "It's almost like your mind is already living somewhere else, while your body is stuck in a refugee camp . . . It drives some people insane." 

I hesitate to make even the slightest comparison between our situation and that of living in a refugee camp. Really, they are nothing the same. And yet, when I read Omar's description of buufis, it resonated with many of my own feelings right now. 

This week, the 11-13 year-old boys in our neighborhood went to camp. Mike is one of the leaders for this age group. Under normal circumstances, both he and Aaron would have gone together. It is something they've been waiting for their whole lives--three days of water and sun and campfires and exploring. A chance to bond as father and son while also strengthening friendships with peers and neighbors. 

We've missed out on a lot of things over the last two years, but for some reason, this one hit me hard. It just seemed so unfair. I wanted Aaron to be there. I wanted Mike to be there. (In fact, it was very inconvenient that Mike couldn't go because they were short on leaders and had to scramble to fill his spot.)

But we're not to the point where we could even briefly consider the possibility. Everything about Aaron's situation is so volatile right now. Things can change in an instant, and it feels like we're always walking on the edge of a cliff.

We had no unexpected hospital visits this past week, but we spent the first half just holding our breath. Aaron really felt pretty miserable until about Thursday: extreme fatigue, frequent nausea, headaches/lightheadedness, limited appetite, and a temperature that continually flirted with danger.

At his appointment on Thursday, his weight had dropped. His doctor said, "Aaron, I know you don't feel like eating, but if you don't increase the calories, I will have to put in a feeding tube. Don't force my hand. I will apologize the whole time I'm doing it, but I'll still do it."

This little threat lit a fire under Aaron. I feel bad for him because he can't seem to eat more than half a sandwich or one bowl of cereal at a time, but he has been trying to eat little snacks in between meals. I think his calorie intake has probably doubled this weekend, so hopefully it will be enough to convince the doctor that he's not wasting away.

One complication with all of this is diabetes. When Dr. R. was trying to convince Aaron to eat, he said, "I don't care what you eat! Get all of the sugary drinks you want and just sip on them throughout the day." "But he has diabetes," Mike reminded him. "Ack, diabetes! I forgot!" They always forget about the diabetes. It just isn't on their standard list of things to check in about. (However, even though sugary drinks might not be the best idea, Mike was able to convince the doctor to let Aaron have fast food again as a way to encourage eating, so there was still one win.)

But speaking of diabetes, it continues to baffle everyone involved. During Aaron's recent illness, we ended up taking him off of insulin completely (with our doctor's permission) because he was eating so little that his nighttime blood sugar was right around 100, and it didn't feel safe to give him his long-acting dose before bed. 

We actually had our first official appointment with the endocrinologist on Monday. We've seen her many times when Aaron has been admitted, and we've been in regular contact with the clinic, but this was our first time going to a real appointment. Aaron has been wearing a continuous glucose monitor for the last month, and so the doctor could easily pull up his numbers. When the doctor saw that his glucose was in the target range 93% of the time, she said, and I quote, "This doesn't even look like someone who has diabetes." 

They drew an A1C (the test that measures your average glucose over the last three months). When they did this test in May, it was completely unhelpful because Aaron had been living on blood transfusions for four months. It really was kind of pointless since there was no way to accurately interpret the information. But this time, Aaron hasn't had a transfusion in over a month. So while the A1C is still not a completely clear picture, it's more accurate than it was.

When the results came back, the doctor glanced at them and got very excited. She said, "Aaron! I have something to show you!" (Aaron, unfortunately, was not super engaged because he felt like garbage.) "Look at this, Aaron! Your A1C is 5.4%! That is a totally normal A1C. It isn't even in the pre-diabetic range!"

No one is saying yet that Aaron is cured or that he doesn't actually have Type 1 diabetes. At this point, the facts remain that he has two of the Type 1 antibodies and his body has trouble managing his glucose. It's obvious that he is still producing some insulin on his own, but it isn't enough to bring his glucose down quickly after a meal. Regardless, his blood sugar is very easy to manage at the moment, and we'll take it because our attention is needed elsewhere. 

As the photos from deacons' camp rolled in this weekend, I felt an "intense longing," not for resettlement, but nevertheless for a life that is not currently ours. I was jealous and angry. I craved the thing we could not have. Caught up in my bitter emotions, I was so obsessed with "what should have been" instead of grateful for: Aaron's normal platelet count, which allowed him to get safely back on his electric scooter after months of being forbidden; a heart rate that is finally back in the green; a returning appetite; and tiny baby hairs cropping up all over his head.

On Friday night, Mike set up the tent in the backyard for him and his boys. He wasn't trying to make up for or recreate the missed days of camp. It was just something different to break up the normal routine. Mike filled a box with saline flushes, heparins, medication, and pumps so that he could keep Aaron on his regular schedule without having to come inside. It couldn't really be called "adventurous," but they still seemed to have plenty of fun. 

Later on in When Stars are Scattered, Omar said, "I've learned that the biggest surprises in life can come when you least expect them. Which is why I was completely unprepared for what would happen next." The camp of Dadaab was filled with thousands of people, and only a tiny percentage ever got the chance for resettlement. But one day Omar was interrupted at school with the news, "You have an interview with the UN for resettlement!" For him, the process ended up taking several years, but this was the first step. And he didn't even have an inkling it was coming. 

It reminded me of this quote from The Horse and His Boy by C.S. Lewis: "When things go wrong, you'll find they usually go on getting worse for some time; but when things once start going right they often go on getting better and better."

And also this, from a random stranger I follow on Instagram: "The thing is, you truly never know what might be around the next corner. When people told me that in harder chapters of my life I didn't believe them. I thought they were ridiculous and naive. But it's true, there are always things ahead that we cannot yet imagine." 

I can't see the future. I don't know what our lives will look like in one, three, five years. I hope we're about to get on the "things going right" track. But in the meantime, I don't want to live out my days feeling buufis. I want to concentrate more on my actual present than on some alternate reality. It might not be my ideal, either for myself or my family, but it is mine, and it's up to me to make the most of it. 

4 comments:

  1. Love the camping picture! You two are the best parents ever! I think that book was on the NY Times best seller list, BTW. Prayers continue! So glad the DM is more manageable.

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  2. I just got Stars Are Scattered from my library! (I'm working my way through all the Cybils finalists). I'm glad the boys had fun backyard camping.

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  3. I’m glad for your good news and I also know that longing feeling. Luckily I really do feel like even better things were on the other side but since you can’t see the future, it is so hard to not feel it. You guys are really remarkable with how well you are living in the midst of your trials. You inspire me!

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  4. I love When Stars Are Scattered. I use it in a class I teach about Colonialism and PostColonialism in Africa. It is so moving and articulates what refugees on the continent face. It's such a powerful book. I love that it resonated in your very different circumstances but I often think about how different our experiences as humans are depending on where we live and when, and yet we often can resonate across space and time around the emotional landscapes we occupy. The last bit of your post made me think of one of my favorite thoughts by Thomas Merton "“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.”

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