The Work Continues
Her name is Irene and her breath comes in ragged blasts, like the sound of an old bicycle pump pushing air as best it can. Her family waits for that sound to fall silent. It will not be long.
The day before I stand in Irene’s house, so deep into the bush that the women I’m with point out crushed branches and limbs, saying, “Elephant,” I stand in front of bored high school students, kept a day beyond school’s closing by a paperwork snafu. I run through my bag of tricks, barren, as it must be after only 10 weeks of trying to teach HIV/AIDS prevention, close the session, and field questions from a few students interested or scared enough to stay behind. A sharp-eyed teen named Diana looks me over. “These people who have AIDS, what do you do for them?” she asks. Words tumble from my mouth, a jumble of platitudes. Diana cuts into my ramble. “But what do you do for them?” “I try,” I answer at last.
Irene lies on a double bed that allows no other furniture into the room that holds her, her mother, eight of my companions, and me. I am with an AIDS group newly trained in home-based care for patients across our 10 villages. This is our first visit. All I know of our patient before we arrive is that she is terribly sick. She is more than that. The jovial mood of the eight good friends on the hike to this tiny house has vanished; grim, but not horrified expressions are on every face. I look around the manyatta—the circular huts of mud-stick-grass splayed across so much of Africa—and listen to the rasps coming from the bed. Diana’s question swims in my head.
Irene is caught in a state of “not.” Not really living; not quite dead. She no longer moves, sees, hears. She feels pain, heard in the wretched whimpers echoing from the bed when two of our group bathe her. I know almost nothing about her, save her name, what is killing her, and where she will die. I do not know her age, but guess that she is no more than in her early 30s. My age.
Her father sits outside with a younger man (perhaps her husband?) and three children, at least one of which is hers. I do know that she is loved. Her mother, her own long life evidenced in a leathery face and wisps of grey hair visible beneath her head wrap, moves from the head of the bed to the foot, to the door frame and back, never out of sight. She does not speak to her daughter while we are there, but her hands are always reaching out. Her fingers peck at the blankets, rearranging them and re-rearranging, constantly. Her hands know they do not have much longer to touch this life they held first, and most often. I sit and watch.
The group believes I know more than they do about providing care for AIDS patients. I do not, and have not been able to get them to understand this. They will turn to me for guidance and reassurance throughout the day.
Luckily, there is a single moment when I do know what needs to be done, having somehow picked up knowledge over the years of the proper way to turn a bedridden patient. I stand at the footboard as Alice, tall and regal, feeds Irene uji, a porridge/millet mixture. Lydia, squat, plump, funny, is at Alice’s elbow, swatting blasted flies that are taking advantage of the fact that Irene’s eyes are perpetually half opened, her mouth in the same repose. The mother stands at the headboard, fingers cupping Irene’s small head, raising it slightly for the waiting spoon. A sound like a blocked drain unclogging is the only cue that Irene has swallowed the food, and Alice delivers another spoonful. Lydia has the look of someone who wishes she had something more substantial to do. I know that look. I stand and watch these four women and am filled with such a sense of love, of blessing, that I nearly explode into tears. Later, the anger will come: how unnecessary, this disease, these losses! The slender, gentle sets of fingers gripping the spoon, the head, the blanket, the air where a fly was; those are what affect me and what I remember.
Most of my time these last few weeks has been spent at the opposite end of the spectrum, with schoolchildren who mostly do not have HIV/AIDS. And we want to keep it that way. I’ve taught 11 basic HIV lessons in seven schools so far. I’m quicker on my feet than I’ve any right to be—given the shortness of time in this role—in fielding questions from kids, many of whom want nothing more than to embarrass the mzungu who has come to talk to them about sex, death, life, and disease. It’s impossible to be self-conscious in these moments, so absurd are the scenarios, so surreal the situations.
AIDS in Kiswahili, by the way, is Ukimwi. I’ve yet to find someone who can translate “HIV.” So many Kiswahili words are borrowed from the Arabic, Portuguese, and English conquerors of East Africa in millennia past that some phrases have no alternate and the Kiswahili speaker just stands, blinking, when I ask how to say something like avocado in the language. “Avocado,” he or she answers. Oh.
My eight companions and I ride back to Ndome, having hiked more kilometers than I know that morning. The women sing the buoyant, joyous songs all Kenyan women sing en route somewhere, even if it is just from the kitchen to the sitting room. Our packed little posse bounces along the dirt, a parade of song, as the driver turns up the road to my dispensary. I sit there, remembering in that moment the rise and fall of the green blanket across Irene’s miserable chest, and I look at the smiling faces of the women I am with and their happiness at a long walk deferred. Extreme highs, extreme lows, dozens of them packed into each day. Always, among the saddest moments, a reminder of the joys that fill this world. I feel blessed for the ability to take it all in.
Irene died the next day. The work continues.
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