Michael K. Elmore-Meegan
A year before his death, 17 year-old Atria weighs 7 stone (98 pounds). He has left his village. He is afraid and he is ashamed. He is embarrassed to be here. He is sweating, he fights. His hands tremble. His pulse is rapid. He tries to smile.
His problems aren't only the rashes and the intestinal worms. These are easily cleared up. But you can't "clear up" anger and fear, or sleepless nights and panic attacks, or how long a few minutes can seem...or the sense of powerlessness watching your own body fall away, the humiliation of disintegration.
Some infections are harder to deal with: a mouth filled with ulcers, an inflamed penis. As the disease 0p..rogresses so do the nausea, the backpain, the headaches. Muscle cramps always hurt, especially when one has very little muscle. Atria has severe diarrhea and the dull aches in his stomach become sharp pains. Despite our best efforts he becomes anemic. His sight fades, as well as his concentration. Atria has stinging burning pain from urinary tract infections, as his urinary tract is blood red and raw.
Moving his bowels has become a feared ordeal, as his anus has lost its muscular contractility and often gets infected. He has no buttocks, not really, just skin stretched over bone, sore to lie on. His joints are hypersensitive. Above all, Atria finds it difficult to breathe. His dreadful wheezing-gurgling prevents sleep and he moans a lot because the painkillers are useless.
Over the coming months Atria finds some support and friendship, some dignity and encouragement. He was a beautiful young man with stunning eyes. A proud, energetic guy, very popular and ambitious with a deadly sense of fun. Now, most of all he hates that he leaks and drips, smells bad, and often cannot control his bowel movements or urination.
He gets angry at himself. He is weak and dizzy and has constant headaches. He cannot eat easily and his ability to digest is deteriorating, as his enzymes are breaking down. The slightest knock causes a painful bruise. Atria is now 6 stone (84 pounds).
After another few weeks, the boy is drained; his mouth full of thrush, a thick, white fungus over his tongue and gums - and ulcers - he has difficulty swallowing. Breathing is increasingly labored. By now, pnewmonia is taking over.
All movement is acutely painful and distressing. Intestinal worms are back again. Atria's limbs are stiffening and his back is covered with ulcers that leak and bleed but do not heal, impossible to manage in a small hut.
His issues are controlling pain, managing extreme distress, reducing humiliation, creating dignity, reducing multiple infections, reducing cross-infection to others. But the worst thing is loneliness. To die of AIDS in Africa is an intensely humiliating ordeal, slow . . . obscene.
Atria is now in his last days of life. His tear ducts have dried up, his hair has fallen out, his bones are brittle. He has no muscle or fat and his heart is 70% weaker than pre-HIV. He has been eaten alive and he has no resistance. All of Atria's senses are shutting down.
His fingernails and toenails have fallen out. His skin is blistered and scaly, and scabs cannot form. The bedsores and ulcers have spread, sources of multiple deep infections. Breathing is almost impossible and the slightest movement is slow and full of dreadful anxiety. I give him water drop by drop through a straw.
I hold his frail, stiffened hand. He is cold, he has no tears. I look into his eyes. I whisper to him, and kiss him. He slowly inhales, half closes his eyes. He breathes out, very slowly.
Atria's face relaxes, his tormented body sags. He is gone.
I held him in my arms and wept.
I cannot describe the fear and emptiness watching such disintegration. As I write this, the images that flash across my mind are not the data, the plan, the project, but the faces, the faces of those who have had no one else to love them . . . nowhere else to go - dumped, neglected, unwanted.
I feel so inadequate, so useless and unworthy, flawed and pathetic, so utterly overwhelmed. I want to be somewhere else. I am not able for all of this.
The horror of the holocaust revolts me. I have sights so unspeakable in my mind. What has humanity done?
Why do we allow people to die this way? What manner of beast are we?
In my aloneness, in my fear, in my pathetic inadequacy, in my own humanity, despite myself, I fall before the feet of God and cry: Why?
Yet in the end, I find the only thing that matters is to do the best I can.
I leap into the darkness and find myself in a sweltering, disease-ridden place, full of flies and gross smells - and a child is crying. I reach out to gently grasp his small, withered hand, too weak to tremble.
I am here. All shall be well.
I am here.
Michael K. Elmore-Meegan, BPhEccl, MSc, TCD, PhD ~ Ngong Hills, Kenya
Syracuse Community/Grass Roots Response to HIV/AIDS Epidemic
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