The Physical, Mental, and Financial Toll Epilepsy Has Had on My Life
Key takeaways:
Jim Tiller has had epilepsy for more than 40 years. He has regular seizures, including some that cause him to thrash about and others that cause him to freeze up, forget things, and lose time.
Epilepsy has several potential causes, including genetics, infections, and head trauma. Jim says his condition is likely the result of head trauma.
Jim’s epilepsy has progressed to the point where he can’t work, and he says it has left him depressed and financially ruined.
My Bill of Health is a series of stories about the financial strain of healthcare.
Jim Tiller was diagnosed with epilepsy as a teenager. Now 56, Jim has spent more than 40 years dealing with the devastating condition that has taken a physical, mental, and financial toll on his life.
Jim is from Knoxville, Tennessee, and lost his job as a certified flooring inspector 4 years ago. Since then, he’s wiped out his savings and sold his truck. He receives government and nonprofit help to pay his rent, utilities, and food. And his brother helps pay for medication that’s critical for managing his epilepsy.
“I was almost homeless last year,” Jim says. “My wife died in April 2023 [following a stroke], and we were only living on her disability. I had lived here for 18 years and paid my rent religiously. But I was 3 days from getting evicted.”
He blames epilepsy for everything that’s happened.
“It’s knocked my life down to where I can’t work,” Jim says. “I had a job I loved, and epilepsy took my career away from me.”
Head trauma as a teenager
Epilepsy is a neurological condition characterized by recurrent and unprovoked seizures. There are several types of epilepsy with varying causes, including structural epilepsy, which can be caused by head trauma.
Jim’s seizures began after he got out of the shower one day at the age of 15.
“I was getting ready to blow dry my hair, and that’s the last I remember,” he says. “My mom heard something fall. She said she was trying to knock on the bathroom door, and she heard moaning and sounds. Finally, my brother came in and he just knocked through the door, and I was flopping around.”
Jim had a knot on his head from hitting the porcelain tub. His mother thought he had been shocked by the hair dryer. But he continued to have seizures, and eventually he had a brain scan. He was diagnosed with epilepsy 2 years after his seizures started.
Jim doesn’t have a family history of epilepsy, so he wonders what brought it on. When he thinks back on that first seizure, he remembers about a year before getting hit hard on the head with a baseball, even though he was wearing a helmet.
“It rang my bell for a minute. But after about 5 minutes, I felt I was OK,” he says.” I don’t know if that had anything to do with it. But if it did, it took a year for something to show up.”
Seizures increased as he aged
When he was younger, Jim had about two seizures per year. Later, in his 30s, that climbed to about eight a year. In his 40s, he started having about one a month.
The seizures come in two forms: smaller ones known as complex partial seizures and more serious tonic-clonic seizures. The complex partial seizures make him freeze up, or do what his wife used to call the “1,000-yard stare,” and not remember what is happening. The more serious ones, which experts used to call grand mal seizures, make his trash about.
“I cannot explain to you how bad I hate to have seizures,” he says. “The whole process of it just is something that I hate to deal with.”
Years ago, his doctor prescribed him Dilantin (phenytoin) to treat his seizures, but Jim says it had little impact. Then, he lost his insurance, and he quit taking medication altogether. That changed in 2016, when his wife had a stroke and his seizures increased, likely because of the stress, Jim says.
“Her whole right side got to the point where she couldn’t move or walk, and she was pretty much bedridden,” he says. “I was trying to work and take care of her.”
At that point, his doctor prescribed him the antiseizure medications Tegretol (carbamazepine) and Keppra (levetiracetam), which he has consistently taken twice a day since. But as his seizures became more frequent, his condition made it impossible for him to work.
He remembers being in the middle of conversations with customers and losing his train of thought. It could take him 5 or 10 minutes to get back on track. But sometimes he couldn’t regain focus. “I had to excuse myself, get somebody else to come in and talk to them,” Jim says.
Life-threatening epileptic seizures
Jim’s bigger seizures can be life-threatening. So far, he has had two car accidents and numerous falls that have left him with significant injuries.
“I’ve hit my head so many times when I fall, and I’ve had so many staples,” he says. “The worst was 31 staples.”
As a result, his seizures have made him paranoid about leaving the house. “I don't want to see the back of an ambulance again for the rest of my life,” he says.
Even the complex partial seizures leave him physically drained. He frequently loses time and doesn’t remember what he is doing. He says he knows when it is the result of a seizure because, when he comes out of it, his two cats are scared and hiding, and they won’t come to him.
“And I’ve done stupid stuff like putting the dishwashing sponge in the freezer,” he says. “I’m living by myself. I’m more scared now.”
He wonders if he has chronic traumatic encephalopathy, like football players who have taken too many hits to the head, and has researched the condition.
“They’re saying that you can do something to your brain and your brain cells could actually start dying off. Right now, this is the worst I’ve had it,” he says of his epilepsy.
Cost of epilepsy leads to depression
Jim says he also has depression because of the financial toll epilepsy has taken on his life. In addition to wiping out his savings and selling his truck, he’s had to turn to his older brother for help.
“He stepped in, and he’s been paying all my bills up until this month,” Jim says. “I love him to death because he has done it. I would have been out on the street. I haven’t ever not paid my bills, and I’ve never not been a responsible person.”
Jim has recently received help from government programs and nonprofits that has eased the financial burden on his brother. But his brother still helps him cover his medications, since Jim doesn’t have health insurance. Jim applied for disability benefits through the U.S. Social Security Administration, but was turned down. So he’s hired an attorney to try to work through the red tape.
“They say that I’m fine in a controlled environment, but everything outside of my home is not controlled,” Jim says. “It’s not safe for me to really do anything. At least at home, I can control what I’m doing and where I am because I don’t push myself. But if I’m out in public, I can’t feel the seizures coming on, so it’s almost like, ‘Well, I hope I don’t fall and really hurt myself.’
It’s hard to get anybody else to understand that.”
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