Tim’s Story

Site created on August 20, 2021



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. 



Newest Update

Journal entry by Marilla Kennell

All for God's glory, my father prayed that his suffering would be for God's glory. 

It was, and it was beautiful to see the hand of God move.

We didn't get the miracle we so desperately wanted. Our loved one is in heaven now, and the grief of that separation,  even if not eternal, cannot be minimized; but God did bless us with a miracle even in the midst of suffering. That miracle was you.

You who have read about my Father's story and prayed faithfully.

You who have visited my family and sat with us, hugging us when we cried and crying with us.

You who have donated time and service in preparing meals, mowing a lawn, cooking or delivering a meal, offering caregiving for my father, nursing my father, providing medical expertise, helping clean our home, going to the grocery store, and so much more

You who donated money from your family to ours to ensure my father received the best medical care and equipment we could give him.

You are our miracle, and for you, we are forever grateful. I wish I knew each individual's name. Could hug you and show you what your generosity has meant to my family, but many chose to remain anonymous, and many shared to friends who shared to friend and so on so forth. 

My father's illness was devastating and quick, leaving us in shock and pain, but you were the healing balm God placed on the wound, the surgeon's tools to stitch up the raw gashes. 

So thank you. Please know that we all see you as our miracle: my mother, Joyce, my brother, Timothy, my sister, Amanda, and myself, Marilla. I still don't know or understand why. All I know is that surviving this is a result of your love. We may be heartbroken and battered, but we are here to carry on my father's legacy and to whisper his prayer that at least one more soul will come to know the hope we have found in Christ's sacrificial love.

It doesn't mean we don't hurt: we grieve deeply at the unexpected, unwanted months we just walked through, but we know, we did not walk alone. You saw to that.

So thank you! I cannot say enough; thank you!

~The Kennell Family


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