A Silent Sickness

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A beautifully horrifying day. Up at 6:00am for mass then off to the AIDS hospice where Sr. Tekewitha works. I was nervous as we walked to the door because this was the kind of work I had come here to do even though I had no idea if I would enjoy it or not. A sense of calmness and peace descended over me as we walked into the hospice, but that same peaceful feeling wore like make-up on the faces of many of the patients: a false exterior, or so it seemed. So many brave faces to cover so many scared and tired souls. Tired of living in a culture, a country, and a world which largely shuns them. A world that is fearful of them and the death they seem to embody and, in some cases, embrace. I was astonished to walk past what I thought were empty beds only to see shrunken frames of bodies lying flat, like several sheets of paper piled below a blanket. Unmoving. Unmotivated. But certainly not unloved. Right? Their eyes spoke of pain and suffering in a language that I’d almost rather not understand and yet a language that I long to understand at the same time. The eyes were hypnotizing: sunken into scarred faces that stare out from bodies that consist, quite literally, of just skin and bones.

We were introduced to Paul, who was sitting outside doing his laundry. He’d arrived at the hospice 4 months earlier unable to walk and barely strong enough to even sit up on his own. And while I marveled at how thin he was now, I was shocked to find out that he was now 40 pounds heavier than when he’d first arrived - at 6’2”, he was up to 100 pounds from a mere 60 before. Crazy. A proud smile spread across his face as he told us how much better he was doing and feeling than when he’d arrived.

Drew was another man we spent a lot of time talking to. At 35 years old, he’d gotten into a car accident. The man who was driving had not been wearing his seatbelt - he was fine. Drew had been wearing a seatbelt and, as a result, his back was broken in several places and he was paralyzed from the waist down. He told us his story with such remorse - he talked about living his life differently if given another chance. Earlier in his life he’d spent 4 years in the army and had traveled around the US: Florida, California, DC. He was also a terrifically talented artist and showed us his sketchbook while explaining that he had been an independent tattoo artist for a while. AIDS from a contaminated needle, maybe? I wanted to ask him but I couldn’t bring myself to do so. I was embarrassed. I was healthy. Later in the day we were working with one of the children, asking him to name words that rhymed with “bed.” Drew spoke up quickly when he heard the question. “Go ahead and say it Shane, you know we’re all thinking it: DEAD.” It was a chilling admission of an all-too chilling fact: most of them have come to the hospice to die. A few recover after months of treatment with antiretroviral medication and some return to their families, but others have no families to return to and so they wait out a death sentence from the confines of the hospice.

Drew seemed to spend quite a bit of time (ironic, because they have too much time on their hands and yet, their time on earth grows short all too quickly) playing paternal figure to Shane. Shane is a 6-year-old living at the hospice. He lived there with his mother earlier in the year but once her condition started rapidly deteriorating, she and Shane moved out to live with his father. Shane’s mother died shortly thereafter and his father, unable to take care of Shane (or unwilling) sent him back to the hospice, where he has been ever since. He’s an extremely bright child, but needs far more attention and affection than he receives on a daily basis…everyone else, after all, has their own problems to tend to. He seemed to lack any sort of impulse control: he started to cry when he couldn’t draw a fish properly, then he stood up and started breaking all of his crayons in half before throwing them out the door. At one point, he started crawling on the floor trying to bite Nancy and I, a very dangerous behavior given the fact that he’s infected by the AIDS virus. It was such a fast transformation, from one personality to another and then back again, and yet I suppose for a kid who has suffered so much trauma at such a young age, the idea of having developed multiple personalities may not be entirely far-fetched. I’m scared for his future - for all of them - to think that some of them will one day walk out on their own, but the vast majority will never see life outside of the hospice again. What a sad, sad notion for such beautiful people...

Love, Meg

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