Every week, Lake Voice features work from the Storytelling Project. This project is a storytelling partnership between a group of young Duluthians who live with some kind of disability (mostly traumatic brain injuries) and various UMD students who help these people write their stories.
One hour spent with this group can help you see how important it is to build community connections and execute service-learning projects the way they are really meant to be done.
This addition of the Storytelling Project comes from Jeff Schneidewent who has compiled several memories and experiences, pleasant and unpleasant, that have contributed to who he is today.
Schneidewent suffered a traumatic brain injury at the age of thirteen when he went into a diabetic coma, which caused blockage in an artery going to his brain, hence cutting off blood flow. The diabetic coma also left Jeff legally blind.
Schneidewent now lives in a group home and often feels lonely and disconnected from the world. This story was a way for him to reach out, and also express the importance he sees in human interaction and relationships.
I Burst Out Laughing
By Jeff Schneidewent, In Collaboration with Auriel Garrett
As I stood there, looking into the eyes of the Travelers, something happened. For each one of those brief moments, I reconnected with a true friend. Though no words were exchanged, they were each telling me the same thing. They were with me. I truly believed that if I had asked any one of them to follow me through the gates of hell, I’d have to hold them back from going in first.
--D.J. MacHale, Raven Rise
At least I thought it was a wall. It sure felt like one. It was hard. It was flat. It stretched out on either side of me. You know . . . wall.
--D.J. MacHale, The Quillan Games
I am telling this story as a way to reach out and hopefully make some new friends. Not just friends that I talk to online, but friends that I see regularly offline. I live in a group home with three women who are all much older than me, so I get lonely. I don’t like the idea of silent messages because they are not personal enough. I am legally blind, so I have a hard time reading messages and typing responses. It also takes a long time for people to respond sometimes. It is extremely important to me to make real connections with people, and I don’t feel like they can be formed online.
I was born on May 17th, 1987 without an esophagus. Doctors had to stretch out what little tissue there was from my stomach. I still have a scar from all the surgeries. It runs from my belly button to my sternum. After they stretched out what little tissue I had, they had a hard time feeding me formula. My mom was the only one who had much luck feeding me. Almost every year up to seven years old, I had to have my makeshift esophagus stretched. As a result, I can make this awesome pterodactyl noise and produce a very convincing Golem voice.
My father often took us down to his parents’ farm in Bruce, Wisconsin. We had fun times down there. First they owned a cattle ranch, eventually they turned it into an emu ranch. We often played on a large willow tree in the yard near an electric fence. Often we would accidentally brush up against the fence, getting the shock of our lives.
When I was about four, my dad and grandpa took me out to a target set up in the cow fields. They gave me a loaded rifle and told me to shoot at the target. Curious, I took the gun and aimed at the target. I pulled the trigger and fell flat on my butt. I remember being extremely grateful that there wasn’t a cow pie where I fell.
My mom divorced my dad when I was three years old. I’ve been told that it was because he would not take care of his diabetes. At the time I thought it was my mom’s fault. I thought she was responsible because she was the one sending him away. I remember my brother siding with my mom the day she kicked him out. I have a vague memory of standing in the door to the garage and peering out to the driveway where my mom and dad were arguing.
I was doing my homework up on the kitchen counter while my mom was cooking a hamburger helper dish. All of a sudden I felt a sharp bop on my head and heard wood splitting. The top half of a spoon fell on my homework. I whipped around to see my mom staring at a broken spoon. The bowl of the spoon had split in half horizontally. Almost instantly we burst out laughing.
I was diagnosed with diabetes a week before I turned five. I didn’t start administering insulin myself until a year later, mostly because I was afraid of the needle. I had a hard time adjusting to the injections, regular exercise, and not being able to eat what I want when I want.
Once, in an Italian restaurant in San Francisco, a manager with curly black hair and a moustache saw me checking my blood and administering my own insulin. He laughed and said in his strong Italian accent, “You are a very brave boy. I will give you a free tiramisu.” I felt very special when he set the huge dessert in front of me. It was so big and rich that I had to share it with my brother and grandparents. Even though I only had a little bit, my blood sugar increased significantly.
One time I was rollerblading with my brother and his best friend. They saw a large, steep hill and went down it before I could say I didn’t want to. So I had to follow them. It started out slow and smooth, but it quickly got bumpier and faster. My left rollerblade caught on a rock and I tripped two thirds of the way down the hill. As you might imagine, I tumbled down, landing on my shoulder with a bad case of road rash. Meanwhile, my brother and his friend made it down safely and were headed into the community park. They didn’t notice that I had fallen. My brother claims he thought my screams of agony were shouts of joy. Eventually, when they stopped and heard that I was still screaming, they headed back to find me. I had slid at least five meters along the pavement; they found me moaning at the bottom of the hill. They took me to the park restroom and my brother took care of the first aid while his friend called our mom. She came down quick and took me to a nearby clinic. When the doctor saw my battle scars, he asked if there had been a nurse nearby when I crashed. I told him no, and asked why. He thought the first aid job was excellent. I told him my brother had done it. Then I got x-rays and found out I had broken my right clavicle. That’s the last thing I remember before falling into my diabetic coma two weeks later.
I used to live across the street from one of those tornado sirens. When it went off every month for testing, my brother and I would often go hug the siren pole. Once my brother was playing “pretend here comes the twister” in the backyard with friends when the siren actually went off. They ran screaming into the house as fast as they could. When I saw his terrified face I burst out laughing.
I went into the coma when I was about thirteen. It lasted for three-to-four months. The best guess for why I went into the coma is that the artificial insulin I was taking somehow negatively affected my natural growth hormone, causing my blood pressure to skyrocket into the thousands overnight. I also had brain damage from having so much glucose that it caused a blockage in an artery that went to my brain, cutting off the blood flow to my brain. My vision was terribly damaged. The focusing mechanism in my brain barely works anymore. I don’t remember the first week after I came out of my coma, probably because it was very traumatic. When I first tried walking, I had to walk with my feet spread way out like I was a cowboy in a western shoot out. I got tired easily, and would usually collapse to the floor.
I was making a LEGO spacecraft of my own design at our kitchen table. I stood up to concentrate on my creation. I was so focused that when my brother took the chair from behind me to get something from a cupboard, I didn’t notice. After he had found what he was looking for, he left the chair and went to make himself some food. When I finished my creation a few minutes later, I was so proud that I had to sit down in triumph. Of course I fell right on my ass! My brother and I both burst out laughing.
I spent most of my teenage life recovering from the coma, and I’m still recovering from it. I needed a feeding tube even though I could eat solids. Mom wouldn’t give any oral food if I wet my bed, didn’t exercise, or coughed. If I wet the bed, I would have to sleep out in the garage. Even in the winter, though it had a heater. If I didn’t exercise, I couldn’t have oral food or watch TV. The worst incident was sometime in mid-April, 2005. I was sleeping in the garage again for wetting the bed the night before. I woke up and had wet the bed. My stepfather came out to the garage the next morning and smelled that I had wet the bed and said, “Looks like you need a bath.” He dragged me in my pajamas into the backyard and hosed me down with ice-cold water. Then he made me strip in the middle of the backyard. I had to walk with my feet numb all the way back to the front door of the house. Then I got dressed and had my breakfast while my mom told me not to tell anyone what had happened. But I barely lasted through the first hour of school before I told my para-pro what had happened to me that morning. She took me to the school officer and had me tell him everything. Then he took a trip to my house without me to check for evidence. They found evidence, so I was immediately taken out of my mother’s custody. I was only a month away from turning eighteen, so I needed a legal guardian.