Imagine your child was diagnosed with a ravaging disease four years ago. It’s a disease you’ve heard of, but don’t understand. “Is it curable?” – you’re not sure. “What does it mean?” – some say it kills you, while others say it weakens your body so harmless things can kill you. “Why my child?” you wonder; was she bad? Did she deserve it? Who is to blame?
These and many more questions are the spoken and inferred uncertainties of the mother of one of my patients with HIV. Four years ago her 20-something year old child was diagnosed with HIV and meningitis (an infection of the spinal cord). The family spent nearly everything they had paying the bills to treat their daughter, only to return four years later in the same situation.
“How can we be expected to pay? I already bought her three units of blood and paid 2,000 pesos (~$300 USD) for a CT scan, a chest xray, other labs and medicines the last time. Our family can’t afford this. We have nothing. And what for? Are we to beg all our relatives again? No. I will take her home. She will be better at home. They (the doctors) must not know how to treat this for her to have it again. Why do you want these tests when we already have the results from before? No, we must go.” And away she went, allegedly to speak to her husband about our proposed offer to help her daughter. A week later, this mother still has not returned.
“The only thing we have to fear is fear itself.” – FDR
Much of the misunderstanding of HIV arises from fear. Fear that having it means you deserved it for being evil. Fear of its contagiousness. Fear that it consumes you, body and soul. Fear that strangles not just the life from you, but all your hope. In essence, fear of all the unknown that engulfs it in a dark cloud of despair.
So, was it this fear that led this mother to abandon her daughter? Could it truly have been the financial issues? Or, did shame construct a barrier too great for this mother to return? Could you return to see your daughter die this way, helpless?
Regardless of the cause, my patient has been lying in a semi-convulsive state in the ER for two weeks. Her right arm is spastic and her clinched fist hasn’t relaxed. Her fever robes her entire corpse in red, though she lies nude with a re-used green hospital sheet covering her body. She has yet to receive antibiotics. On Thursday a cloud of stench enveloped her from the feces she lay in from morning to mid-afternoon. Before we paid for a CT scan and a lumbar puncture, she had no diagnostic tests completed to find the cause of her suffering. Even now, post-diagnostic studies, she has no treatment. Yet I sit here in the comfort of our air-conditioned apartment writing about her desperate situation while she endures in agony.
Why was she forgotten?
Is she forsaken?
“We are hard pressed on every side, yet not crushed; we are perplexed, but not in despair; persecuted, but not forsaken; struck down, but not destroyed.”
– 2 Corinthians 4:8-9
Though her mom may have abandoned her and I may forget her story, she was not forsaken. As her advocate, I can’t empathize with her condition, for I have never felt true dejection, despair, and desperation. But, there is one who has:
“He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him. He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not. Surely he took up our infirmities and carried our sorrows, yet we considered him stricken by God, smitten by him, and afflicted.” – Isaiah 53:3-4
And for some, the hope and promise of this God-man is too ambiguous. Why would he glorify suffering? Why would he take it open himself to leave His heavenly comforts to show us that suffering is the path to freedom. And why would he even go so far as to say, “If anyone would come after me, he must deny himself and take up his cross and follow me” (Matthew 16:24)? These are the questions of old, those of Ivan Dostoevsky, and occasionally the honest doubts of those with faith who witness terrible suffering.
Then we are to suffer. But, what hope is left?
His promise is:
“He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.” – Revelation 21:4
The difficulty in accepting this promise lies in our entrapment in the web of time. The future demands waiting, but waiting requires enduring. We do not have the luxury of being eternal – apart from time – to see that the healing has already begun. But, through fulfillment our commission to feed the hungry, shelter the homeless, clothe the naked, and grieve with the grieving, we may catch a glimpse of this truth.
What can I do? I can grieve, for in this I acknowledge her suffering. And, I can pray that I learn to love deeply, fully, and completely.
“If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing.” – 1 Corinthians 13:3