I just lost someone dear today. He had Huntington’s disease & his brother did too, stricken in his 20s only able to lie in bed with all of his body twitching uncontrollably for 20 years, legs, arms, head. He couldn’t stop moving. He had soars on the back of his head from his head movement up & down on his pillow constantly. I always tried to look in his eyes & show him I cared but his twitching was so rapid, it was hard to catch his gaze.
One day this song popped in my mind. Adam Rippon chose this for his Olympic Gold medal ice skating performance. His total, masterful control of his body on ice, twirling & soaring, made me marvel & ache at the same time. Why couldn’t my friend control his muscles too? I imagined maybe there’s a place & time in heaven where my friend would feel his contracted body transform. Where he would metamorphosize and be free to move with grace and agility, dignity, freedom, and lightness of being, like a gold medalist ice skater doing breathtaking triple axels to beautiful music and roaring crowds.
I once met a grandmother whose grandson had died at the young age of 8 of cerebral palsy, a disease that robbed him of his ability to walk and confined him to a wheelchair. Right before the grandmother died, she said she saw her grandson in heaven running and leaping with joy freely in a field toward her, smiling, welcoming her. I yearned for this freedom of movement for my friend. Would he be able to leave his body and soar? Would he be full of joy and heavenly peace with no physical limitation anymore?
When I played this song for him, miraculously he would get still enough where we could look in each other’s eyes. I’d sit on the floor next to his bed that had been lowered to the ground, cause he would fall off it moving so much. I’d put my face close to his so I could catch his moving gaze. I’d tell him he was so handsome, made in the mage of God, imagio dio, that God loved him so much and was so proud of him, as was I, as was his family. I thought if Jesus wanted to be anywhere, being with my friend would be top choice. This is where Christ is, comforting my friend through his suffering in ways I will never understand, giving him courage, in the mystery, in this bed. I sang this song to him last night before he died. His eyes were closed all
day until the song came on.
To touch my friends shaking and clenched hand is to be blessed, beyond time and sorrow. To kiss his forehead, to feel his kindness is to find Christ, waiting to be found in and through him.
His mother died when he was young. Her big picture hung over his bed — 2 ft by 2 ft. She had this picture taken when she went into beauty school but cancer preventing her from ever having this career. She was more than beautiful. Her smile was radiant and shined off the portrait as if for today. Sometimes my friend looked off in the distance. I hoped he was seeing his Mom. A loving God wouldn’t possibly have let her die when he was so young, to face his disease without her. Surely God saw to it that his mother would be an angel for him. Surely in God’s great providence, he made a shortcut between his Mom’s place in heaven and my friend’s place, so she could be at his side constantly, soothing him tenderly, like any loving mother would, especially when he trembled.
My friend had this terrible, devastating, incurable disease and yet he had a sweet soul and presence, his gentle love came through his eyes, even though he couldn’t talk. When he was younger and all his days, his Aunt said he never said a mean word about anyone. He never said “why me.” He never took his pain and suffering out on anyone. He was “so good”, his Aunt said.
I never saw my friend smile. The disease robbed him even of his ability to move the smallest of facial muscles that enable this everyday expression we take for granted. When he took his last breath, he had a smile on his face, at long last.
If you listen to this song, please say a prayer for this wonderful man of God, that he is free, flying on, full of God’s love, Light and everlasting peace. “Fly on, right through, maybe someday I’ll fly next to you.” Today an angel was born.... with wings.