Friday, August 30th

“Alia is really sick. She’s been having some trouble breathing, and now she doesn’t even know what’s going on around her when people come in.”

“That’s serious. You should take her to the hospital right away. How long has she been like this?”

“Since last night, but only the worst since today. We’re taking her to the hospital in the morning.”

“What you’re saying is really scary. You should take her right away.”

I had heard earlier that Alia was sick but it hadn’t registered. Someone from that family is always sick, always dealing with a fever or a cough or fatigue or weight loss.

It didn’t surprise me that they weren’t planning on taking Alia until the next day. Show up at a hospital outside of normal hours and unless they have a 24/7 urgent care center there may not even be a doctor on the premises. Unless you can justify urgent care, there’s little point to being there. If you’re a poor person you are even less likely to be seen, plus coming early will mean you’re paying an extra day for that bed. What can you do?

But the consequences can be disastrous. Back in 2013 our landlord died in our home due to an illness which had worsened in late evening. He passed away around 2am.

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Monday, September 2

“[garbled request from an unknown number]”

“What did you say?”

“A fan. That table fan you have. Can we use it?”

“Who is this?”

“It’s Insha. Alia’s in the hospital but she doesn’t even have a fan and it’s terrible in there. Can we borrow yours?”

“Let me check with Peregrine. I’ll call you back.”

Peregrine didn’t think baby Shakeenah could go without our table fan, but suggested we offer to buy them a fan to use. It felt wrong to keep our fan when Alia was in the hospital sick without one,  so I agreed. I told Insha (the middle sister in the family), but she told me not to worry about it, they’d find some relative with a fan they could use.

I found out later that Alia’s father did take her to the hospital the same day I insisted that she go. They went to a nearby government hospital that most of the people in our slum seem to prefer. But her condition didn’t improve. I don’t know the full story, but her sisters say that what they heard was that Alia isn’t getting seen by doctors, is getting no care, and in the suffocating heat and humidity her condition is worsening.

And they still don’t even know what’s wrong with Alia yet.

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Tuesday,  September 3

“I’m coming home but I’m going to try and visit Alia in the hospital first. Can you check with them and figure out where they are?”

“Okay, I’ll check.”

[10 minutes later]

“They’re not there anymore! They moved out because they weren’t getting any care and Alia’s getting worse. They’re at some private hospital now way over on the other side of town. I’ll try to figure out where it is.”

Alia’s father is a good man. One of the best guys I know in the slum. And if he felt his daughter wasn’t getting the care she needed and her life was in danger, then he was going to do anything he could to make sure she got it.

I had suggested they go to the major government teaching hospital in town, which I’m certain has the best doctors even if the crowds are enormous and the facilities aren’t much to look at. I later found out that indeed that’s where they went first. But when trying to check in to urgent care they were told to wait as it was too full. Thirty minutes went by, an hour, Alia lying on the sidewalk, unconscious, and still they couldn’t get in.

Alia’s father said that if they wouldn’t take her in he was going to have to take her somewhere else. The hospital forced him to sign a liability form affirming that he had removed her from the premises of his own volition.

Somehow, through some random connection that I didn’t fully put together, they ended up at an expensive private hospital 12km away. Alia is still unconscious, is put on a respirator, has a major infection of the lungs. But they still haven’t been told what’s actually wrong with her.

My own unrelated illness, which had started Monday morning, is getting worse. I’m running a fever of 101 and can’t go more than 1-2 hours without visiting the bathroom. And today happens to be Shakeenah’s 1st birthday. Neither myself nor Peregrine is in any mood to do anything, but I get two cakes on the way home from work, one to share with the neighbor kids and the other for a tiny private party that’s just me, Peregrine, Shakeenah, Shadia, and a girl from Peregrine’s safehouse who we’ve helped settle into the community.

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Wednesday, September 4

I’m getting worse and call in sick, an easy procedure because I’m the boss at the sites I work at. But it seems important to check in on Alia’s family, especially because I have no idea how they’re going to pay for a private hospital. Peregrine and I go over to their house. Only the sisters are there.  I don’t feel like I can stand up for long.

“How is she doing?”

“She’s doing better than before. She’s in an AC room and she’s on a respirator so she can breathe. It’s a good hospital. But she is still unconscious.”

[reeling a bit from learning that she’s on a respirator but comforted that she’s finally getting full care]: “Have they figured out what she has yet?”

“It’s TB.”

“How are you guys doing on money? Are there any problems?”

[Maria, the oldest sister, starts to tear up]: “Yes…there is a problem. The doctors say this will cost 20,000 rupees a day. We don’t have enough money.”

[pausing for a moment to consider what it will take to ensure that Alia’s care is not compromised by lack of funds]: “I will give you 60,000 rupees. I don’t have the money now, but I can get it. Give me half an hour.”

I leave, but Peregrine stays. She later tells me that the sisters were arguing after I left over whether I had really said 60,000. To them it seemed like an impossible sum.

I drag myself to the bank and back and hand Maria the 60,000 rupees. She dissolves into tears. Rubi (the 2nd oldest sister) breaks down as well. There has to be some pent up emotion over their sister’s condition. But the main source of their tears seems to have been the fear that they were not going to be able to afford their sister’s treatment and their disbelief at receiving the money.

60,000 rupees is perhaps 5-6 months income for Alia’s father. Combined with the two rooms they rent out, the small salaries I pay two of Alia’s sisters for teaching our literacy program, and all sorts of random odd jobs the women in the family do to make ends meet, perhaps they could save up that amount over a number of years. But the high-interest debts they would have had to take out to get that amount in an emergency would grow faster than their ability to pay them off.

From my side of the equation, 60,000 rupees is just 800 American dollars. At our salary peaks Peregrine and I  would have been earning that much every two days. It is nothing to us. Pocket change. We will never miss it.

That is how the world works right now. One person’s life and death decision is another person’s new TV or mobile upgrade from the perfectly fine flat-screen TV or mobile they already have. Alia’s family would be drowning in debt over less than many Americans pay to keep up their caffeinated milk habit.

If they had been able to get the loans at all. If they weren’t among the millions of their peers who never end up in the hospital, who die in their homes, because they don’t have the money.

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Friday, September 6

Alia’s condition improves, she’s taken off the respirator, and on Friday she is discharged.

Just hours after she’s discharged Alia takes a turn for the worse and the family rushes her back to the private hospital. But they don’t have a respirator or bed available, they’ve already given her spot to someone else. Was it just a mistake? Or did the hospital assume that a poor family wouldn’t be able to keep paying and decided to cut them off before they suffered losses?

On Wednesday when we first realized how serious the situation was, Peregrine had called up my boss to see how she could help. My boss is the most well-connected person we know, and since Alia was our student she was keen to help. She went far above what I thought she would do, sending her own personal assistant to Alia’s hospital to talk to her family, and then sending her to another hospital where she had connections, to see if she could get a bed for Alia at a discounted price.

They said they had no room.

So my boss sent her assistant to another hospital, and then another one. For two days she went back and forth across the city. And at one place after another she was turned down, until she had to give up, out of options.

My neighbors in the slum are often unable to access essential services. I blame this on their lack of connections, their poverty, corruption. But why couldn’t my well-connected boss secure a place for them? I wasn’t privy to the conversations or the thought processes, so I’ll never know. But did she betray that the family was poor, and was that enough to get them turned away? Or were all the hospitals just too full?

I can’t imagine any wealthy person ever finding themselves incapable of accessing care.

Now on Friday, for the third straight day my boss’s personal assistant goes out to try to secure somewhere, anywhere decent for Alia. And again she fails. In the end, Alia ends up at the designated government TB hospital.

I try to visit her, but the sisters tell me that their father has banned them from visiting – he says the conditions there are terrible, it’s too dirty and there’s too many sick people too close together so he thinks it won’t be safe for them. My fever and diarrhea are gone but I’m still quite weak, and figure I should wait at least a couple days myself.

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Monday, September 9

Alia’s condition has continued to deteriorate. She’s unconscious again, and her arm has swollen up to multiple times its size with a terrible infection (from inappropriate cleanliness of the IVs?). The family claims that no doctor saw Alia over the entire weekend. They tell me not to visit as their father is about to pull her out and try to find somewhere, anywhere else for her to go.

I’ve been afraid for Alia several times in the previous week, but this day was probably the worst. The family later says it was the same for them. I am terrified that she is going to die.

A connection from their village hooks Alia’s father up with a doctor at a small private hospital on the outskirts of town. He rushes Alia there. The care is much better, she has an AC room and the doctor is checking in on her regularly. However, the cost is exorbitant, especially as her medications are so expensive. I go to the sisters and ask if they need money. They tell me it’s 23,000 a day and they have no idea what they will do. I go to my room to get the 10,000 I have stashed away, and promise more. The next morning I give another 50,000. It is a HUGE amount to give…and sobering to realize that it only buys two days.

 

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Friday, September 13

I’m finally able to visit. As Alia’s already been in the private hospital for four days I take out some cash before I go.

I’m surprised to find her whole family there – the sisters by coincidence were able to come on the same day and beat me there by just an hour.

Alia is incredibly skinny and does not look well. An IV drip feeds into her arm but gratefully she does not need any respirator equipment anymore. One leg is bent from having not been straightened for too long. Her arm is swollen and discolored. And she doesn’t talk, responding to questions with grunts.

But my concerns about her appearance are alleviated by the family. Everyone is in high spirits because Alia is doing so much better than she had been four days earlier. She’s fully conscious, her breathing is fine, she’s moving much more. The doctors are giving a good prognosis and saying that she might be discharged in 4-5 more days. But she will be on medication for two years.

I try to lift Alia’s spirits by showing her pictures and videos of my baby daughter. Alia has always been especially fond of Shakeenah. After watching for a while, she turns to me and shares her first words of the visit.

“Can you bring Shakeenah?”

I tell her that I hope to sometime, but not right away.

I’m usually not good with hospital visits, but something about this one is easier. The dad ran off at my arrival to get a snack and a soda that he insisted I take and made room for a place for me to sit, repeating the gesture each time a guest arrives. Myself and Alia’s parents and an aunt and uncle and three of the sisters are crowded into the room’s limited space. The sisters stand fawning over Alia, visibly happy to see her awake and active.

In the midst of so much suffering, it was somehow a pleasant place to be.

Alia addresses me twice more while I’m there. Once she asks when I’m going to have guest teachers come and do more fun stuff again. Later she repeats her request for me to bring Shakeenah. Before I leave, I step outside with the father to discuss finances. He repeats the number the sisters had told me – 23,000 rupees a day – and adds that he hasn’t worked in three weeks because he hasn’t left Alia’s side. I give him the 50,000 rupees I brought. Buy two more days.

All this time, two weeks of trial, no one in the family has asked me for money,not once. I’m the one who brought up the topic every time. And in the four years I’d known the family we’d never once given them any sort of financial help outside of the room we rent out and the salaries we pay the two sisters, so they couldn’t have known that the money would be coming. They’re just not the type of people to ask. But they have accepted every offer, with great gratefulness.

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Tuesday, September 17

I spent hours last night researching infant exposure to TB, and what I’ve found is terrifying me. I’ve definitely ruled out Shakeenah going to the hospital to visit, despite Alia’s requests. Even Shakeenah’s previous exposures before we knew Alia was sick are terrifying me. I feel sick about it for both of them. I’m also scared for Alia’s cousins, one of whom is about the same age as Shakeenah but isn’t nearly as healthy and spent far far more time in Alia’s house.

In the morning I get a message from my doctor friend telling me there’s a 95% chance that TB wouldn’t have transmitted from the sorts of interactions I describe. 5% sounds like a huge number. But she recommends a wait and see approach, careful observation for coughing or weight loss, and not to worry otherwise.

In the afternoon I’m able to visit Alia again. This time only her mother and father are around. Alia is crying as I arrive, I’m concerned and ask her where it hurts, what’s wrong. Her mother tells me that it’s okay, nothing hurts, she’s crying because she wants to go home and they said she can’t yet. It makes sense, she’s been in a hospital bed for two and a half weeks and there aren’t any TVs in the rooms here.

If anything Alia is even skinnier than she was four days earlier, but it could just be my imagination. There are some signs of progress – she has the catheter out, and I feel like the swelling and infection in her arm looks somewhat better than before. She can move around but she can’t walk yet, and she’s still hardly talking. Once again I spend most of my time showing Alia pictures of Shakeenah. They really brighten her up, and after I get a smile out of her I ask if we can take a selfie, which she obliges with another smile. It’s the highlight of my day.

I tell her parents why I couldn’t bring Shakeenah, and they understand. I also share what the risks were to Alia’s cousins and they seem to take me seriously and say they’ll look out for the signs. We talk a little about how the illness progressed in Alia, and what comes next. I was surprised to find that Alia had actually had a fever for two weeks before the day of the emergency, and that they had already taken her to the hospital a week earlier but the doctors had prescribed medication without identifying the actual source of the illness. They tell me that a “head doctor” from somewhere else had visited the day before and checked on Alia’s progress, and that he was able to reduce the number of medications that she is on and the costs will be somewhat lower going forward.

They seem to be happy to have me there, and Alia is happy to have someone entertaining her. I had brought some more money but don’t give it, as in the moment I get the feeling that I don’t want every visit of mine to be associated with money. I’ll go ahead and give it to the sisters tonight anyway.

Pray for Alia. There is still a long road ahead.