“People with disabilities are still people. They deserve to be treated with respect and not shunned away.”
Matt was born in rural Kansas. He lived with mom Dianne, step dad David and older sister Christina.
He had his first tonic-clonic (grand mal) seizure at 8 months old. The hospital diagnosed it as a febrile seizure and sent him home. He had three more seizures over the next 10 months. The fourth seizure happened in the doctor’s office and lasted 30 minutes. The medical resources available where they lived were limited, so he was sent to a medical center in Hays, Kansas for further evaluation. An EEG indicated the tonic-clonic seizures were secondarily generalized. They were originating in his left temporal lobe and then spreading to the entire brain. He was subsequently diagnosed with LTLE (left temporal lobe epilepsy).
In 1994, after numerous medication combinations were tried (at one point 8 at a time), his neurologist suggested surgery. His seizures were not responding. They were considered intractable and surgery was the last hope for relief.
In 1995, he was admitted to a hospital in St. Paul Minnesota. He would spend the next three months having tests to pinpoint the exact area of seizure origination. A surface EEG was unsuccessful so they performed EEG implantation surgery on the left and right side of the brain. Due to safety concerns, he was confined to his room for 30 days. Eventually, they found the area of origination. A partial left temporal lobectomy and multiple subpial transection were performed. They were optimistic that this would bring the seizures under control. Unfortunately, that was not the case.
In 1998, after continuing to have seizures, Matt was taking to a hospital in Chicago, where a VNS (Vagus Nerve Stimulation) device was inserted. This too was unsuccessful.
In 1999, the family moved to Texas. His new neurologist raised his medication every time he had a seizure. The doses became too much and resulted in an overdose. As a result, Matt developed pancreatitis and lost 20-30 pounds in a short period of time. He was in extreme pain and could not eat or hold anything down. When his medication was reduced he fully recovered.
In October of 2000, Matt complained of a headache. The next day it was still there, but he went to school because they were having a picnic. As the day went on he began acting differently. His parents knew something was wrong when he tried to eat, but he couldn’t hold his spoon. They immediately took him to the hospital. During an exam, the neurologist tapped on Matt’s chest, but he did not respond. A CT scan showed a subdural hematoma on the left side of his brain. He was rushed to emergency surgery. His brain was swelling quickly and they weren’t sure if he was going to survive. The neurosurgeon reported there was exposed bone, from the previous surgery, that was rubbing against the brain tissue. This caused the hemorrhage and an increase in seizures. They put a foam type barrier in place to protect the bone and the brain. Matt fully recovered with no long term effects.
Despite all the seizures, surgeries and complications, Matt was a typical boy. He loved NASCAR, playing basketball, bowling and building model cars. He mostly did these things by himself because he didn’t many friends. The kids he grew up with wanted nothing to do with him. They taunted and bullied him throughout his childhood. Matt had a seizure during a baseball game and fell to the ground. The kids began yelling, “eat the dirt” while laughing at him. He was beaten up, had sticks thrown at him and at one point his life was threatened. His elementary school years were difficult.
His teachers treated him differently. They told his mom that when they asked him a question he would “sit there and act stupid.” After having simple partial seizures in class he was punished. They made him stand up in front of the class and he was not allowed to participate in some activities. His mom approached school administration about the issue, but the assistance she received was non-existent. She was told, “it’s no big deal everybody has a little seizure activity.” Finally, in the second grade Matt was given an aide because he missed so many assignments and was falling behind. While it helped some, he still struggled.
In middle school he had two IEP (Individualized Education Program) teachers who made a huge difference. Robin and Eric helped him with his studies like reading and math. Matt struggled with handwriting so they allowed Dianne to write the answers for him as long as he did the work. But, they helped him on a deeper level than his studies. At this point Matt had become severely introverted because of the epilepsy and how he was treated by his classmates and former teachers. Robin and Eric took him under their wings and helped him come out of his shell. He started interacting more with them and others. This gave Matt a new found confidence and a sense of accomplishment and independence. When it was time to move on to high school Matt was sad because he loved these teachers. Their kindness, understanding and compassion are still with him today. They still keep in touch and help however they can.
Matt started high school after the family moved to Texas. He was afraid of high school at first. He had such a good experience in middle school, he thought it would be different. After all, he was in a new state and a new school with a new set of teachers. But, there too was someone who went the extra mile to help him; an aide named Jacqui. Like his previous teachers, she helped him with his studies and acted as a voice of encouragement. Whenever he used the words, “I can’t,” she would respond with how much potential he had and that was the extra push he needed to keep going.
When Matt switched to a new high school some issues arose. Whenever he had a seizure they wanted to call an ambulance instead of mom. Eventually, it got to the point they were calling his Epileptologist directly and bypassing the family altogether. At the request of his doctor, Matt was taken out of school and allowed to graduate early. Him and his mom both credit his middle school teachers and the aide at his high school for playing a role in his graduating. They took the time, had the compassion and patience to work with him. They gave him the confidence he needed to know he could do whatever he wanted regardless of what anyone else said.
After graduation, Matt was part of a program where he had many friends and activities to participate in. He was also on the Special Olympic team called the Arlington Eagles. There was so much to do and he stayed busy all the time. Now in Tennessee, Matt’s life is much different. There aren’t any programs like there were in Texas. He’s applied for jobs, but has had no luck. He can’t drive and with his parents and friends working during the day, he spends the majority of his time at home alone. It got to him and he contemplated suicide; “I was tired of my life. I was ready to go. I planned on jumping out of the car. I had it planned. I knew exactly where I was going to do it. I changed my mind because I have a lot of family and friends that would miss me. I’m glad I didn’t do it.”
He still loves NASCAR, building model cars and bowling. One of his favorite television shows is “Fast N’ Loud.” He loves the cars, the deals, the rebuilds and the main host Richard Rawlings. He’s even read Richard’s book. One of his biggest passions is serving in his church. He attends small group meetings and is as an usher. This has led many new friendships, which in turn has built his confidence and encouraged him to open up to people and let his true personality show.
Matt has faced many stigmas for having epilepsy; from bullying to being denied employment. He’s been isolated by some and made an example to laugh at by others. But, his unbreakable and kind hearted spirit doesn’t go unnoticed. Regardless of what has been done to him, he will help someone without question. His mom Dianne says, “Matt has so much respect for other people and a big heart. He’d be willing to help anyone at any time.”
For those living with epilepsy Matt says, “Don’t give up, it’s not worth it. I know there is help out there please look for it.”
To those who don’t have it and don’t understand it he says, “Epilepsy is more than seizures. It’s medication side effects, osteoporosis (I was diagnosed at 26) and other neurological conditions. It can affect our ability to walk, talk, write, think or remember.”
Matt has goals set for himself and is determined to accomplish them. He wants to work, live on his own and eventually have a relationship. He’s been discouraged by some people who ask, “why would he want that, he has epilepsy.” That doesn’t deter him, it makes him more determined.
With a strong support group, tireless determination and unfaltering spirit, nothing will stand his way… We have no doubt he will accomplish all of his goals!
Thank you Matt for sharing your story… You are an Epilepsy Warrior and it’s an honor to put you in the Purple Friend Spotlight! Keep shining!
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