Dumbstruck I watched a YouTube documentary.
Story of a 19-year-old male,
Afflicted from birth with EB (Epidermolysis bullosa)
– “a group of connective tissue disorder that causes skin to be fragile and blister and tear easily. Blisters and sores occur when clothing rubs on the skin or when the skin is bumped.”
He lays motionless in bed.
Body wrapped like an Egyptian mummy in white bandages.
Revealing only a pleasant face, blistered neck, and fingerless hands.
He shares his story of painful palliative care with a heart of peace.
As he pumps in pain medication into his body, his heart pumps out gratitude
- Gratitude to his mother and father.
As skin breaks into blisters and sores, eyes break open with joy.
As parents’ eyes water with tears, his eyes reach out in comfort.
As he lies motionless in bed, his message moves like lightning speed through social media.
His bed becomes his cross.
His blisters are his piercing wounds.
His parents’ faithful presence at his side.
Perhaps some family members chose to abandon,
Unable to face the pain of the piercing disease.
Mortality becomes his friend,
Gratitude for life his companion.
What a grace to possess at 19 years old.
Wisdom lesson?
Suffering – the gateway to Grace.
A hard pill to swallow, but grateful to sit at the feet of John Hudson Diligen and learn from him.
I wish I could be grateful to sit at his feet. I am in too much pain. I will pray for him and his family.
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