11/02/2025
Good morning, family. I am struggling with seizures this weekend. This makes spelling more difficult. Seizures for me are brought on by stress. I need calm and rest to recover.
Yesterday I met with others non-speakers over Zoom, and I was so excited to be connected, but even good stress can cause absence seizures. I had a few of these seizures that only last a handful of seconds, but really disrupt my ability to communicate and cause a migraine, wiping me out for the rest of the day. This was so frustrating to once again be so betrayed by my body, but I still wanted to be present for my other friends. One of them said this was their first time to purposely build relationship. To not have this opportunity for two decades is a common tragedy amongst spellers.
To empower us to communicate is not only to unlock our intelligence which will undoubtedly change the world and our family picture of our reflection of the image of the Father, but also redeem our connections and prevent many from death. Because to be disconnected from meaningful connections is death. Many of us who have lived most of our lives without the ability to connect have wished we were dead. This is our living hell.
I reached this point at age 15. This was a low point, and I managed to type, “I want to die” on an iPad at school. My teacher called my mom, and mom talked to me about the reasons I had to live, and they were all the people who love me. My family has always tried hard to find ways to connect with me. Reenacting movies, singing songs together, and creating bedtime stories has become our connection point. These efforts kept me alive. But to really deeply connect, to truly live, I needed language expression.
This was why I knew I could not give up on spelling to communicate, even though it was the hardest thing I have ever done. To want something so much, causes my body to self sabotage. I know there are spellers and parents out there who are frustrated by their slow progress, but I am here to remind you that to give up is death.
As hard as it is for communication partners to deal with a rogue body, please remember it is 1,000 times harder for your non-speaker because they want this more than you. This is the elixir to life. Do not withhold it. To my non-speaking counterparts: We need you, and you need us. Do not give up. Life is worth it for the sake of connection. Connection is life. Reach for life and hold on.
Love,
Jack
