With all the force my admittedly feverish body could muster, I searched for the precision of tone to allow my words to echo in the small space between politely accepting another’s concern, yet firmly enforcing my own opinion.
“I am not going to the hospital.” I declared to Hendy.
Hendy is my workmate, whose tiny frame and gentle voice miscast him as the most persuadable of our rough-and-tumble work crew. I say ‘miscast’ because, although tiny and gentle, Hendy is also tirelessly patient, and undeterrably loyal to our Directors, one of who, Ikbal, was orchestrating this entire intervention via SMS. As per usual, Hendy has been sent as the sacrificial lamb, this time to endure Kate’s stubborn work ethic – a force to be reckoned with. But as I could have reluctantly predicted, Hendy ultimately proved David to my Goliath, and after two consecutive days of running a 102 fever, my coworkers’ tag team brought me to the emergency room of a local Catholic hospital, one of the best medical centers in Bandung. A blood test and thrombocyte count later, and the doctor dropped the news. “Demam Berdara” While the literal translation of “bleeding fever” is rather frightening, demam berdara is more commonly referred to as Dengue Fever.
Thinking this might disrupt my schedule for at most just another day, I went straight for the bottom line, “So exactly what should I do to recover?” I asked, expecting to be given some medications and orders to bed rest. His response was unexpected and though he used very simple Indonesian, I thought perhaps I had misunderstood. “Stay here?” I asked, incredulously, “In the hospital? Until Sunday?” It was Wednesday.
I figured this was one situation that my diplomatic discussion skills still wouldn’t get me out of, and so I finally gave way to the fatigue creeping through my body, collapsed back onto the bed on wheels and disappeared behind the sterile blue curtain. As most people do at hospitals, I waited, through two brief power outages with remarkably quick reboot time. Maybe I couldn’t control getting dengue, I thought, but I can manage a healthy recovery, and with that I unargumentatively accepted being wheelchaired away to my room.
Dengue fever is not uncommon in Bandung, but there was a mosquito that, in an office-full of people, chose me to bite. Two days before checking into the hospital, still trying to deny my fever, I sat at our morning briefing, a daily meeting where our feelings and plans for the day are shared between our two Directors, handful of Program Coordinators and myself. The practice and purpose of this morning briefing is adapted from Rehab, where the sharing of feelings prior to starting work is prized as an effective teamwork strategy, as well as a method for personal development and self-improvement. The honesty is surprising at first, especially when side effects of HIV medication are involved. For example, “I had really bad diarrhea last night” elicits no giggles at morning briefing, but rather the same respect from a statement of inspiration from a movie watched the night before, or a difficult thought still being wrestled with from a book. I realize that every morning I smile and say “I’m doing really well”, and get right to laying out my plans for the day, while my coworkers each expound on their emotion, whether excited, depressed, hurt, or confused. I realize that I like controlling the image people have of me, even these my closest friends in Bandung. I prefer for people to see that I’m happy and grateful for all I have, which is not a lie. But it’s certainly not the whole truth of my emotional spectrum. For some reason I insist on guarding that complexity, as if I’d rather have everything figured out before presenting it to others.
And so just days before being fully hospitalized, I offered up a thought at the morning briefing. “I had diarrhea last night” I say seriously, and no one laughs. “I rarely get sick in America, and here I have been sick a couple times already, and I don’t like feeling sick,” It is not lost on me that I’m speaking to almost all people living with HIV, who not only have endured sickness as a result of weak immune systems, but endure sickness under the social and morally judgmental eyes of their community, even their families and friends, and even the healthcare workers who discriminate in spite of their clinical knowledge about the disease.
“When I’m sick I can’t always rely on myself like I usually do,” I explain, wondering just how American is my obsessive focus on independence. ” I really like to care for others, but I do not like others taking care of me.” I would like to expound on this feeling so that they can understand my point, but I realize I’m not even sure myself why I feel this way. “So maybe,” I try to conclude, afraid I’m just dragging on now, “Maybe if I am sick it’s like a test from God, Maybe He wants me to understand it’s good if I can allow other people take to care of me too.” I looked up to a circle of heads nodding respectfully. Even if I’m wrong, I think, at least I’m finally getting the point of this meeting.
But I was, unfortunately, not wrong! As if I somehow wrote the plot for myself, or really was just so tuned in that I predicted the future, I ended up lying in a shared room in the Maria Wing, adjacent to the Joseph Wing. I held off from asking if there is a Jesus wing, as I probably would not want to be in that one anyway.
Intending to send a few days reading, writing, and taking advantage of uninterrupted planning time for various work projects, I asked Ginan to bring me my books, notebooks, and laptop, which he dutifully did. Yet I quickly realized that between the exhaustion effects of the dengue and my left hand tethered to an IV drip, very little work was going to get done. Finally starting to accept my fate – do nothing of importance for 4 more days – I texted my fellow scholar and dear friend Lauren, who works 8 hours away in Yogyakarta, and being the supreme human being she is, Lauren texted back right away that she was coming to take care of me.
My resistance immediately set in. I wanted to argue, to tell her not to inconvenience herself, to assure her I was just fine and could survive the stay. But two parallel thoughts streaked across my mind, like the tire tracks of a Mac truck coming to a screeching, sudden halt. One, I love taking care of my friends, so why would I try to prevent Lauren from being able to be there for me? And two, I did feel lonely, even if I was relatively more mobile than my diapered, elderly roommate.
From the clanging of food plates, shuffling of footsteps and bustle of activity that began every morning at 5:30, I quickly realized that staying in the hospital feels a little bit like living in New York City. You are surrounded by a flurry of activity and so many people, but you can feel so incredibly alone if you are there without family or friends.
And so Lauren made the trans-Java trek, and meshed into full on mom-mode from the first moment her cool hand stroked my sweaty forehead. Under her care I rested often, stayed clean and comfortable, and didn’t have to eat soggy hospital chicken after the first night! We discussed her new research project about patient centered care models, and we caught up on conversations about life after this scholarship ends. Ginan took the late night shift and slept over every night, and like Lauren, sacrificed his own comfort to make sure I slept soundly and finagled my IV bag to get to the bathroom safely. Day after day, instead of worrying about my illness, I was actively engaged in my recovery.
In Indonesian hospitals, when it comes time to ay your bill, you have to report, appropriately enough, to the “Rekening” desk a name whose etymology remains unknown, though the humor is appreciated, When my day of Rekening came, I owed just $450 for 5 days of full hospital care at one of the best facilities in Bandung, including full inpatient care, various daily lab tests as well as pharmaceutical care. And while each of those bill items was completely necessary for my recovery, there were a few items missing, without which the billed care would not have been sufficient for recovery. There was no Lauren or Ginan on the bill, and the costs in money and time they both sacrificed to drop their lives for 5 days to make sure I was healthy. There was also nothing on the bill about calls from my family, about all my coworkers and local family who came to visit me, and nothing about my scholarship foundation who gave me every assurance that anything I needed they would help me with.
Most of our HIV programs at Rumah Cemara revolve around our case managers who accompany patients at the hospital and make home visits. It can be difficult to make that kind of accompaniment sound attention worthy, when more immediate concerns like medications, nutrition, and hospitalization are on the front lines. But even from just a short stay at a good hospital with a relatively painless condition, I gathered that a caregiver makes a world of a difference. There simply aren’t enough doctors, or even nurses, to ensure that every patient has the attention, explanations, assurance, and peace of mind that lead to a strong recovery. I have yet to conduct a literature review but I would be curious to know how much cost savings can be accumulated by maximizing ‘patient performance’ – low stress, positive attitude, follow instructions – and minimizing ‘patient error’ – any deviation from suggested treatment due to patient attitude and morale. I am tempted to think it would be significant.
I can’t say that this adventure did anything to change my stubborn work ethic – after all I’ve been typing for hours disregarding the demand for bed rest, pondering health reform and cost effectiveness measures. But it certainly has made a significant dent in my stubborn independence – not just admitting but taking pleasure in the fact that nothing significant will be achieved, including my own health, on my own.
