ISLAND LAKE – Laughter erupts in the breakfast nook of the Conley family’s Island Lake residence. Nicole Conley, 26, raises the marijuana cigarette to her lips and inhales again as the camera’s shutter clicks away.
“It’s kind of hard to smoke when [someone’s] taking pictures,” she says with a smile.
Marijuana is still very much a taboo topic in Lake County, but Conley, her older sister, Danielle, 29, and their mother Mary, 56, are working hard to change that.
‘This wasn’t her’
In 2007, when Conley was 16 years old, she was rear-ended by a tow truck and suffered what her doctors informed her at the time was a “severe concussion.” In the year after the accident, however, Conley began exhibiting major personality changes, including fits of rage that resulted in multiple suspensions from school and several visits to the principal’s office. Her grade-point average plummeted from a 4.3 to just barely above a D.
“I was getting kicked out of everything [and] I was pretty angry,” Conley recalls. “I started failing everything and every teacher was kicking me out of class. And I got suspended all the time. The dean was always screaming at me.”
While most people, from teachers to physicians, were ready to chalk her behavior up to typical teenage rebellion, her mother and sister knew differently. They knew it was somehow linked to her injury.
“I was on her side,” her mother, Mary, says. “She’s a sweet pea. I went through one [teenager] already, so I knew this was different. This wasn’t her.”
“We knew it was chemical,” her sister, Danielle, adds. “But a lot of people didn’t believe us.”
Conley’s strange behavior and increasing fits of rage continued for five years. Five years of fear and anger and frustration for her and her family with no answers to the questions they kept asking: What was wrong? What was happening?
“We thought she had a brain tumor,” Danielle says. “We got to the point where she was telling us, ‘I’m scared; I don’t know what’s going on.’ And we were like, ‘What makes someone rage like that? What makes someone have a personality shift?’”
Five years after her accident, on the way home from a family trip to Florida, the Conleys finally got their answer.
“I drove from … Montgomery, the very south of Alabama, and I drove all the way through to Kentucky,” Nicole says. “So Alabama to Tennessee to Kentucky. And it was all nighttime because it was in November and I don’t remember blinking once.”
The next morning, after breakfast, Conley had her first grand mal seizure.
“I sat her down, but it wasn’t going away this time,” Mary says. “It was lasting longer. We called them issues: She’d rub her fingers and smack her lips, [but] it didn’t go away and instead it went into a full-blown convulsive seizure and we called 911. And then we all knew what that was.”
What had been misdiagnosed as anxiety was refractory epilepsy. Conley’s fits of rage and other behavioral changes were petit mal – or mini – seizures.
Now that the Conleys finally knew what they were dealing with, they were able to work with doctors to set up a treatment plan to control the seizures. The treatment plan involves a daily regimen of medication for the remainder of Conley’s life. In the first year after her diagnosis, she tried as many as 10 different medications to find the right cocktail that reduced the severity and frequency of her seizures.
Along with the grand mal seizures, the medications diminished her quality of life.
“And now we’ve learned these medications are horrible,” Danielle says. “They cause personality changes; they cause you to wet your bed. They cause you to have a rash from head to toe. They can kill you.”
Nicole adds: “I preferred having a few more petit mal [seizures] than medicine because it makes me so angry. It gives me so much rage.”
Illinois and medicinal marijuana
The Compassionate Use of Medical Cannabis Pilot Program was enacted on Aug. 1, 2013. The program allows patients suffering from one of the 30 qualified medical conditions to apply for a “medical cannabis registry identification card” and buy medical marijuana from one of the 51 licensed marijuana dispensaries throughout the state of Illinois.
In 2015, the program was expanded to allow for eligibility of children under 18. Seizure illnesses, including epilepsy, were added as a qualified condition as well. Last year, advocates of the program celebrated a major victory when Post-Traumatic Stress Disorder was added as a qualifying condition.
The pilot program has been extended until 2020.
According to the Illinois Department of Public Health, as of March 1, nearly 17,000 applicants have been approved for their medical marijuana card.
Dr. Rahul Khare is the founder and CEO of Innovative Express Care, a primary and urgent healthcare facility in Chicago. He also is a staunch advocate for medical marijuana and helps his patients through the process of submitting their application to the state.
Despite the program’s success, he says there is still a vast majority of Illinois physicians who are uncomfortable or unwilling to support their patients’ inquiries into the method of treatment, causing patients to seek out new physicians such as Khare who are willing to sit down with them to answer their questions.
“I think [physicians] don’t understand that they’re not endorsing the use of medical marijuana; what they’re saying is that the patient has the medical condition, that the patient is their patient, and that they’ve done a physical exam on the patient,” Khare says.
He adds, “I think that we have been told as physicians until last year that marijuana was illegal and that if your patient was on it, you should counsel them to stop taking it because it’s an illegal drug and it has no scientific benefits. Now we’re hearing and there are good studies showing that it can be a helpful medication and it’s very safe.”
Once a week, Khare brings in application specialists to assist patients in the fingerprinting process required for the background check component of the application.
Since the launch of the pilot program, Khare has seen its success firsthand in some of his patients.
“I have 15 people who I’ve weaned off [opiates] completely and their quality of life has improved,” he says.
While this is less than five percent of the services he provides patients at his facility, “it’s definitely an aspect of what I do that I think helps so many people so I really enjoy that part of it.”
A return to nature
Before the accident, Conley was not “pro-marijuana.”
Danielle says, “Like a typical teenager in this town, she was anti-marijuana until she must have been about 17, so after the accident.”
Conley began “self-medicating,” as it is called in the cannabis industry, with marijuana after discovering it was the only thing that helped calm down the rage caused by the traumatic brain injury from the accident.
She continued consuming cannabis after her diagnosis in 2012, and when her family saw an improvement in her quality of life (along with a reduction in the frequency of her seizures), they began looking more closely into medicinal benefits of marijuana.
When the pilot program was launched, Conley was one of the first people to receive her medical marijuana card. She consumes cannabis on a daily basis – and in a wide variety of forms based on the relief she is seeking.
She applies a homemade oil (cannabis concentrate mixed with coconut oil) on the soles of her feet or soaks drops of it underneath her tongue. She smokes it. She bakes it into homemade edibles.
As Danielle points out, “Everyone’s different, but I’ve noticed the smoking helps [Nicole] more with the nausea and the appetite and the instant relief. But [the oils], you soak it under your tongue and you’ll feel it in about 15 minutes. You swallow some, you’ll feel it in about an hour. You eat a brownie, it could take one to two hours, but it’ll last longer and it’ll have different effects. It’ll calm the bowels down, it’ll reduce the inflammation, and it’ll relax you so much more and help you sleep.”
While cannabis was not the miracle cure the Conleys were hoping for, it has allowed Nicole to reduce her pharmaceutical medicines down to just one instead of the “three or four” most epileptics are usually required to manage their seizures.
The Conleys share their journey with medical cannabis with as many people as they can to help change the stigma surrounding it while continuing Nicole’s “patient-guided program” in hopes of finding the perfect combination that will eliminate her seizures entirely.
To date, her last convulsive seizure was in November, but the petit mal seizures persist.
“If we could do anything to stop her seizures,” Mary says, “we would do it.”