Debbie Wilson was disabled 22 years ago when the 16-year-old driver of a pick-up truck knocked her down and backed over her at a Kentucky Fried Chicken. He was driving the wrong way, against the arrows, as he left the restaurant. The tail end of his truck clipped her jaw, knocking out her teeth and throwing her to the ground, head first.
The injury dramatically altered her life. Prior to becoming disabled, Wilson enjoyed a career in law enforcement as a felony probation and parole officer for the state of Florida, and was also in her second year of law school. She had grown up and trained in Tampa, where her father was a supervisor of federal probation and parole officers and her mother was a U.S. marshal. Her husband, who is now deceased, was a county deputy sheriff. In a split second, the swipe of a pick-up truck dramatically changed her life. She could no longer hold her 3-year-old son. She became reliant on others.
For two decades following the accident, she wore a helmet from the time she woke up until the time she went to sleep. She suffered from migraine headaches and uncontrolled seizures, including several grand mal seizures every week and daily partial cluster seizures lasting for hours. Seven years ago, a loss of balance led to a repeat head injury that did more damage to her brain and exasperated her seizures. She learned to walk, talk and tie her shoes for the third time in her life.
Nothing was under control. Her neurologist admitted to her that she was one of up to 30 percent of seizure patients whose seizures cannot be controlled by conventional medications. Mega-doses of pain killers and seizure meds screwed up her insides. Ten years ago her large intestine was removed, leaving her with constant irritable bowel syndrome (IBS), and necessitating diapers. Dehydration from diarrhea all day every day regularly caused her potassium level to plummet, resulting in several hospitalizations a year to stabilize life-threatening hypokalemia.
Wilson ’s pharmaceutical regimen was considerable. Pain meds for migraines; high doses of central nervous system depressants for non-stop seizures; eight Lemotil, a Pfizer pharmaceutical intended for short-term use, daily for years for IBS; and antidepressants to deal with a life spent taking pills. The pain medications to control the post traumatic headaches were ineffective, possibly because of the seizure meds she was taking.
“I was opiate resistant, and I think that’s because I was taking so many anti-epileptic drugs in such massive proportions,” she said. “At one point I was taking 400 milligrams of Phenobarbital a day. My doctor told me that it was enough to put two men comatose.”
Wilson has been under the care of doctors specializing in high-risk patients for years, and has been told that she’s one of the worst seizure patients they’ve ever seen. She’s been turned down for seizure studies because her condition is so precarious. While trying to stabilize the seizures, doctors occasionally poisoned her with too many seizure meds. Charcoaling with a substance that binds to drugs and prevents them from being absorbed into the bloodstream is one method of dealing with drug overdoses. She estimates that she’s been charcoaled 30 times in the past two decades.
She developed type 2 diabetes five years ago, and began taking medication for that. Constant anxiety from spiraling health contributed to a diagnosis of post traumatic stress syndrome.
Throughout it all, Wilson , 57, advocated for others in similar predicaments.
“The most hopeless group of people I’ve ever met are not in wheelchairs,” she said. “They are people with traumatic brain injuries, and that’s no lie. We are given no hope. I can’t tell you how many doctors wrote me off as just not worth it. This goes to show you that doctors can be wrong.”
Fifteen years ago she started a website to write about traumatic brain injury. That site, domiciled in England , has had over 8 million hits. A Google search of TBI+Debbie Wilson leads to her story, poems and prose about living with a brain injury. Through her writing, she’s tried to help a wide range of people, from infants to war veterans, that suffer from serious head injuries. Physicians and lawyers specializing in traumatic brain injury, and even the manufacturer of the wheelchair she uses, feature her poetry on their websites.
One year ago, she went to Chicago for out-patient treatment for her migraines, which were getting worse. Head trauma patients often suffer from chronic headaches, and chronic pain is also known to cause changes in the nervous system that can worsen over time. The physician she visited insisted on admitting her for a 14-day treatment, but his hospital would not take Medicaid. Her insurance did not cover in-patient care. With only Medicare being accepted, a daily out-of-pocket expense of $500 would have been beyond her reach. She could not afford the treatment that she needed.
On the train ride back home, she decided that she needed to take her life back. Having head aches and seizures non-stop while taking multiple meds was bad enough, but wearing a helmet and diapers all day was pure hell. She thought about it for several days before asking a friend to buy her some marijuana. For a former law enforcement professional who had never smoked marijuana, the decision was not an easy one.
“I’d come from the other side of the law,” she said. “The way I had been raised, I would never have considered crossing the line and doing something illegal. I had never experimented recreationally.”
“First of all, it helped my headaches, and then after a few weeks I started noticing that I wasn’t having diarrhea any more,” she said. “When it helped the seizures, that was just the icing on the cake.”
With cannabis, her chronic migraines were immediately relieved. Her uncontrolled cluster partial complex seizures, which previously would have continued for hours, could now be stopped quickly and without hospitalization. Even her diabetes improved. When her blood sugar level stabilized, she stopped taking diabetes medication. Prior to cannabis, she’d been told by her doctor that the brain injury caused her brain to stop producing serotonin, which is why she needed antidepressants. When she began feeling better all over, she went off of the antidepressants.
Out of the blue, memories from long ago returned. She was able to tell her 25-year-old son things about his infancy and his deceased father that her accident had erased.
“My son’s father died when he was very young, and I never shared with him the stories that most parents get to tell,” she said. “Since I’ve been smoking, he’ll tell you that I have come up with new information that is exactly accurate. I know for a fact that I’m now accessing file drawers in my memory bank that were shut for more than 20 years.”
While considerable research exists about the role of cannabis and short-term memory, cannabinoids are not generally credited with enabling the retrieval of long-stored, forgotten memories. Wilson is unsure of whether her new-found memory is a result of the cannabinoids at work or better brain function without central nervous system depressants.
In private, her doctors noted her dramatic turnaround. One gave her a written notice stating that without the grand mal seizures she could be trusted to hold her grandchildren for the first time.
“That alone is a blessing that I never, ever saw coming,” she said.
Because cannabis is rated as a Schedule 1 drug that the federal government insists has no known medical benefit, and because the state of Illinois has not approved a medical program, the medical profession is hogtied, unable to follow its ethical mandate.
“In my state, I didn’t have the support of my primary care physician or my neurologist last year when I did this,” said Wilson . “When my neurologist first realized what I’d done, she was upset. She was afraid for me and told me that I’d need to leave the state. And although my primary care doctor did document that I’d detoxed off of the meds, he would not write down that I was using medical marijuana.”
A few months ago, Wilson sat down with her neurologist who wanted to understand the remarkable recovery.
The neurologist, whose name cannot be used for the usual reasons of harassment from the DEA, looked at all of the information from Wilson ’s trials and tests. The improvement was undeniable. She asked Wilson how often she was smoking marijuana to receive such dramatic benefit. Wilson told her that she smokes every four hours. She did record everything in Wilson ’s medical records.
“My story has not ended yet,” she said. “I’ve been able to retire my seizure alert dog, my helmet, my diapers and over a dozen central nervous system depressants, pain relievers and antidepressants. So many areas of my body have been helped that it’s not even like I’m the same person.”
As an Illinois resident, Wilson learns about cannabis on her own. With no state program, she calls for help around the United States . Hopeful for the first time in decades, she’s contacting cannabis professionals. Project CBD, an education initiative, put her in touch with compassionate caregivers throughout California . Patients Out of Time is also working to get her story out, and even to find a computer for her. Although she is reading everything she can get her hands on, cannabis publications raise her awareness in ways she had not planned.
“I get so tired of stoner talk,” she said with a laugh. “To tell you the truth, I’ve had to learn a whole new lingo to understand what I’ve been reading in the past year.”
She wants to learn more about CBD-rich cannabis strains, and has been told that if she becomes a resident of Michigan she can enroll in a dispensary program to evaluate the effectiveness’ of the medicine that she’s using.
“Her story is amazing,” said Doug Ordway, Green Bee Collective in Ann Arbor , Michigan . “Debbie is in touch with her condition, and so you will get a lot of clarity from her. There are so many people who are not aware of what medical cannabis can do for them. When the stories get out and other people who have conditions hear, others will be attracted.”
Ordway worries that recreational users are spoiling it for those who need cannabis for medical reasons, which is causing Michigan ’s Attorney General and other government officials to turn against that state’s medical marijuana program.
“The larger market has always been the recreational user,” he said. “What’s lost in all of this is that we’re not really about getting people high. We’re here to get people well.”
While Wilson has considered moving to a cannabis-friendly state such as California where her sisters live, she’s barely making ends meet on disability. She does not have the resources to move. She does not want to leave her son and grandchildren either. Like many others, she’s written to and met with Illinois legislators.
Medical cannabis patients in Illinois will continue to feed the thriving black market for the time being. Despite polling that shows overwhelming support for medical cannabis, the Illinois legislature defeated HB30, which would have created the Compassionate Use of Medical Cannabis Pilot Program Act, in May 2011. The vote was close and many legislators admitted that they just caved and voted against it when it became apparent that the bill was going to fail by three votes anyway.
According to the Marijuana Policy Project (MPP), a national organization lobbying for reform, because sentiment is in favor of a cannabis program, a similar bill will be reintroduced. MPP had commissioned polls in several areas of the state that turned up a complete disconnect between the legislators that voted against and their respective constituents. One of the polls, in a western suburb of Chicago with a Republicans base, polled 75 percent in favor of medical cannabis. Other districts returned similar results of between 70 to 80 percent in favor.
“The moderate Republican legislators there think that their constituents are opposed to this, but, really, when you look at the numbers gathered, that is certainly not the case,” said Dan Riffle, MPP legislative analyst. “Yes, we will continue to target Illinois . It’s an effort that’s been under way and building support for several years. We have no plans to abandon the effort now that we’re so close to finally putting in place a program that can help the hundreds of patients we’ve heard from throughout Illinois .”
© 2011 Mary Lou Smart