Tim Kennell

So many people have been asking about my father's recent diagnosis of CJD that I thought I'd share the journey in writing, which has always been easier for me. My family and I are overwhelmed and devastated to see a healthy man lose everything in less than 2 months.


On July 30, 2021, after 3 weeks of struggling with memory and basic motor skills, doctors from Emory told my family my dad has creutzfeldt-jakob disease (learn more at the cjdfoundation.org).


Now only another 3 weeks later, my dad is bedridden, unable to feed himself, and barely able to speak, which means he is completely disabled and incapable of working.
I can still see him, running across the monkey bars, a giant made taller by mountain height. Even now in the memory, he towers, though 20 years have passed.


Once while running over those monkey bars, able to skim the trees with his shoulders, he fell.  My mother's  panic is a familiar comfort as she said: "That's it! No more running across the tops of monkey bars." We had spent the summer months outside each night. The fireflies joining in our hunt. Giggles chasing each other as we played the many varieties of tag available to youth's imagination. 


My dad declared, "I'm fine," as we huddled around the fallen giant--tiny stone statues, faces etched in fear. That was the first time my father, the Jolliest Giant, fell.

On July 4, 2021, my mom and dad went down to Birmingham, Alabama to visit my siblings. On July 13, 2021, my dad waved goodbye to me as I stepped onto a plane. I didn't realize it was the last time I would see him healthy. 


July 30, 2021. 


CJD.


On earth, 900 people have won Shirley Jackson's Lottery this year. 900 people condemned to waste away into oblivion, losing sight, mobility, memory, and identity. 900 people. 


My dad was 901.


In less than three weeks a tiny cripple, in the form of a misshapen protein, toppled my giant of a father.  The words, "I'm fine,"  were a distant hollow echo.  


Day 1 of the diagnosis came and stopped his ability to work. Day 7 took his ability to walk. Day 14 claimed his ability to feed himself. Day 21 stole  his family and left alien statues surrounding him. Alone the Jolly Giant crumples at the replication of the microscopic cripple.

And we, like stone statues gather around him, faces etched in fear. Helpless.

Now only glimpses of the man we love shine through as he fights to find his way back to what he calls normal. But Creutzfeldt-Jakob Disease is swift and merciless.


There is no time to process. Each moment is overtaken by another before the last two have disappeared. 


Emergency services is on speed dial and new medical equipment is needed daily.


Already, medical bills are so numerous they are backlogged. 


My dad disappears every day, and no doctor can stop it. How do you stop a disease that the body won't attack? 


No treatment. No cure. 


CJD.