Larry Burgess poses for a portrait in his home in Colorado Springs, Colorado. Burgess had his first seizure in 2009 and was later diagnosed with grand mal seizures. In April 2017, he was arrested in his hometown Fredonia, Kansas and charged with three felonies: growing marijuana, manufacturing a controlled substance, and using a cellular or computer device to facilitate the commission of a felony. He has lived in Colorado for three years but frequently travels back to Kansas for court hearings. (Daniel Brenner for Leafly)
Kansas native Larry Burgess has spent nearly three years living in Colorado. He doesn’t know where he’ll be spending the next three years—whether in his newly-adopted home state or on probation or in prison in Kansas.
Due to grand mal seizures, which cause him to black out and have violent muscular contractions, Burgess can’t drive and hasn’t been able to hold down a full-time job for over a decade. He currently spends part of each day feeding the squirrels that gather for handouts in the backyard of his small but tidy Colorado Springs townhouse, while his wife works as a dental technician.
Burgess takes a moment to comment about a jet-black squirrel that jumps down from a tree to his back steps to pick up a peanut. “She’s a female,” he comments. “She doesn’t come around as much as the others, because the others bully her.”
Kansas vs. Burgess
In April of 2017 Burgess was arrested in his hometown of Fredonia, Kansas. After intensive questioning he was charged with three felonies: growing marijuana, manufacturing a controlled substance, and using a cellular or computer device to facilitate the commission of a felony. That last charge was due to Burgess having posted pictures of his cannabis on Instagram, to inform others on how he was using marijuana to treat his seizures.
A bond modification, agreed to by the judge in Kansas, allowed Burgess to move to Colorado while his case is pending “so that I can medicate legally,” he told Leafly. But he is scheduled to go back to Kansas in mid-February, where he can either agree to a plea deal or a jury trial. If convicted on all three felonies, he could face close to 25 years in prison.
What’s the matter with Kansas?
The state of Kansas has some of the strictest marijuana laws in the country, and a reputation for vigorously prosecuting residents who use cannabis for medical purposes.
In 2015 state authorities arrested Garden City resident Shona Banda, who was using cannabis to treat her Crohn’s disease. As a result of her arrest, Shona lost custody of her young son and was facing up to 30 years in prison. The case drew national headlines. Several years later Banda, who had no criminal record, was given a plea deal of probation. She also ended up leaving Kansas.
“Stories like that of Larry Burgess are the rule and not the exception in Kansas,” Lisa Ash Sublett, president and founder of Bleeding Kansas, a non-profit and all-volunteer cannabis patient advocacy group, said in a statement to Leafly. “As long as Kansas continues to criminalize patients and deny them the rights guaranteed to them by our state constitution, more families will be forced to flee our state and become refugees in legal states.”
“But as Larry’s case clearly exemplifies,” the statement continued, “Kansas patients are not fully safe in legal states. Sending Larry, and others like him, back to prohibition states to face decades in prison, and more than likely their death, is absolutely cruel.”
Living with seizures
Burgess just turned 43. The born and raised Kansan grew up in a rural small town of fewer than two thousand people, the kind of place where everyone knows everyone.
Up until his early 30s Burgess led a relatively normal existence. He was married to a girl he met in college. They had three kids, now all in their 20s. Burgess worked in retail and, for a while, owned a small store of his own. Then in 2009 he had his first seizure.
“I’d had several concussions as a child and then a couple in high school and one from a car crash incident,” he said. “They never actually pinpointed what caused my seizures to start, but it was probably one of those.”
Burgess cannot recall what happens when he seizes. But he does know the seizures last anywhere from 30 seconds to two minutes and leave him with painful spasms and severe muscle contractions.
“They’re very draining,” he explained. “Afterwards I’m pretty tired, a little lethargic. It takes a little while to get full cognitive ability back. But cannabis, for one, is tremendous for me, allowing me to have a quicker recovery time, allowing me to do stuff throughout the day where I’d normally be in bed or resting because of the multiple seizures.”
In the beginning, in 2009, Burgess estimates he suffered three or four seizures a week. His doctors prescribed a variety of epilepsy medications, but he didn’t like them because they dulled his mind. The medications also caused blood toxicity and came close to killing him while his seizures became worse: longer in duration, more frequent and more powerful.
‘Doctors don’t know everything’
Burgess’ general physician in Fredonia was frustrated by his condition and sent him to a hospital in Wichita for more intensive testing including cat scans, spinal taps, and psych evaluations that contained hundreds of questions.
Then doctors in Wichita told Burgess he had conversion disorder. “That means that it’s in my head, that I was causing them to happen,” he said. “I was upset about that.”
Burgess was also the victim of sexual abuse when he was a toddler, and although he said he had come to terms with that trauma the doctors considered the abuse as an underlying cause of his seizures.
“It wasn’t until I had my own kids that I thought about (the abuse),” he said. “I probably should have seen a psychiatrist, but I dealt with it. I had a good job, wasn’t under any more stress than usual, I was in good health.”
In the middle of all this suspicion and self-doubt, Burgess said, a male nurse at the Wichita hospital showed some compassion and gave him some hope.
“He came in and he grabbed my hand that day and told me that doctors don’t know everything and don’t listen to them, because he’s been in this game a long time and he’s heard many doctors say things that were completely off the rails,” Burgess remembered. But when he returned home to Fredonia, Burgess’ GP also wouldn’t believe him, so he changed physicians.
Getting a proper diagnosis
For the next several years, Burgess was on a “litany of medications,” taking up to 23 pills a day: valium for the seizures, anti-psychotics, morphine, muscle relaxants, and anti-depressants followed by additional prescriptions “in case the medicine I was on made me feel too weird.” “I was so out of it, there’s like two years of my life that I feel I was not part of,” he recalled.
In 2013 Burgess and his wife took out a loan and headed to the Mayo Clinic in Minnesota. After his examination, the clinic’s head of neurology presented the diagnosis of non-epileptic grand mal seizures.
“When he was going through my records and talking about the (earlier conversion disorder diagnosis) he was very upset about that. And that made me feel good, actually,” Burgess continued. “So that’s why he put the actual diagnosis, that it is non-epileptic grand mal seizures, he’s 100% confident… giving me that diagnosis. And he wished that he could get rid of the first one.”
Going to Denver
In 2014, when adult use cannabis was legalized in Colorado, Burgess began his online research into medical marijuana.
“I found on a neurological website that there was a specific strain, called The Industrial Plant, that people with seizures were having…a good response,” he said. And that strain was being sold at dispensaries in Denver.
It took Burgess six months to convince his family that he should try medical marijuana. When they finally agreed, his wife couldn’t get off work so his mother and his two aunts drove him the nine hours to Denver. They purchased an eighth of an ounce each, the maximum purchase allowed at the time for out-of-state customers.
After smoking two joints his first night in Denver, Burgess went to sleep and, for the first time in ages, slept through the night without a seizure. “I was overcome with emotion,” he recalled. “I called my wife; she was sobbing, I was sobbing. And from that moment on I was an advocate. Trying that was a life-changer.”
While cannabis helped with the seizures Burgess would go through his supplies from Denver within two weeks. In between trips to Colorado he relied on the poor quality, illegal cannabis he could find in Kansas. He also learned to make his own FECO (full extract cannabis oil). Burgess noted it would take an ounce of cannabis bud for him to make three to five grams of oil, which he would micro dose several times per day. And as the legal cannabis market in Colorado evolved, he started purchasing edibles, vape pens, tinctures, and salves.
Turning his life around
The difference cannabis made in his life, Burgess said, was remarkable. People in his small Kansas town knew he was in bad shape because he rarely left home. But once he had a steady supply of cannabis to help control his seizures, Burgess was able to resume the basic activities most people take for granted like attending his kids’ events and even mowing his lawn.
Burgess said he didn’t hide the fact that he was using cannabis.
“People knew; people wanted to know,” he recalled. “I didn’t flaunt it, but if they asked I would say that I’m using cannabis for my seizures. Most of the time they would say that was fine, they we’re glad you’re better. It didn’t take a rocket scientist to see that there was some major difference in my life.”
Burgess began growing his own cannabis and rebuilding his life. He began a home catering company that had some success.
A bleak future
But someone tipped off the authorities and in April of 2017 came the police raid and accompanying charges.
When asked if he could just stay in Colorado and defy the Kansas authorities, Burgess smiled.
“I can’t,” he said. “What will happen (in that case) is the county attorney (in Kansas) will send a warrant to the governor’s office, which will send that directly to (Colorado) Governor Polis’ office. He will then issue the state highway patrol to come pick me up. And then they would take me, whenever they decided, to the Kansas line. There, it would be the Wilson County Sheriff’s department that would be picking me up… and then I would go there and sit in their jail until they decided to get this done and over with.”
“I don’t even think I should accept a felony,” Burgess continued. “I told the Fredonia authorities from the get-go that I would plea to multiple misdemeanors. But I don’t feel that I should have that on my record, multiple felonies for a medical necessity and a first offense.”