At five twenty in the morning, an alarm wakes Brie. In a haphazard moment she taps snooze, rubs her eyes, then lets out a sigh. The October morning is cold and sunless. Her left hand reaches for a small lamp which she uses as a spotlight. At the edge of her bed is a gray denim case which lives a pipe that looks like it belongs to Sherlock Holmes. The pipe is placed on the windowsill next to the fan that she switches from intake to exhaust. The lamp still in her left hand is directed underneath her bed, where she stores a large plastic bin filled with glass jars. She finds one labeled Ackenocet. “I have dislocated my wrist opening these jars before,” she says. The jar releases a potent citrus smell like standing in a field of lemons. “I wish I could cancel this appointment.” Grabbing a dime sized pinch of cannabis, she packs her pipe, sparks the lighter and takes a deep inhale.
In four months Brie can’t “get high” anymore. On her twenty-sixth birthday, she will age off her parent’s health insurance policy, leaving her uninsured amid the throes of a serious lifelong illness. Brie has Ehlers-Danlos syndrome, a genetic connective tissue disorder; her body produces faulty collagen (the glue that holds your joints together). The loss of coverage means she can’t keep her specialist, and she will lose the only medicine that has given her any true reprieve from her pain—medical marijuana.
Eighteen months ago Brie, who is also my girlfriend, was a patient at a pain specialist out of Farmington, Connecticut. She was left stuck in bed twelve to sixteen hours a day. She was prescribed fentanyl along with oxycodone, but none for sudden pain flares, injury, or sleep. At a moment’s notice she could experience a subluxation (partial dislocation) of any number of joints and was given no additional medications for those instances. She was forced to modify her life around the drugs that provided limited relief of pain. The medication didn’t last her even half of a day.
Her life was not her own and a change was needed. She turned to the only place she got any answers, her Facebook support groups. The biggest fear of those who suffer from chronic pain is being labeled as a drug seeker. Doctors are reluctant to prescribe any additional meds when they see how many opioids Brie takes. Additionally, they need to consult her pain management doctor as regulations on opioids tighten. Last summer Brie woke with excruciating chest pain and went to the E.R. where the doctor quickly dismissed her. “I went in complaining of severe chest pain. The doctor dismissed me without a care. He didn’t know how to handle someone with my condition.” One day later, she began the first of a ten day stay at St. Francis Hospital to remove her infected gallbladder. “The E.R. nurse also told me that my test came back negative, I’d be flagged as a drug seeker because my test was negative. Doctors are quick to dismiss people in pain.”
After the surgery her EDS pain management continued with the standard drug protocol. Brie was advised by a fellow “zebra” (a nickname given to those who have EDS because they are often misdiagnosed; when people hear hoofbeats, they think horse not zebra) to schedule an appointment with Dr. C, a pain specialist who prescribes medical marijuana. “I really didn’t know what to think. I never smoked before but I really didn’t have a choice. If this was a way to get my life back, then fine.”
Sitting up in bed, Brie exhales a thin white line of smoke. “I’m waiting for it to kick in.” she says. It’s now five thirty-five. A knock is heard on the door: it’s her mother! Her mother enters the room and asks to help. “Tea with the 1:1 honey please,” Brie says relaxing. “Now the ride will be more tolerable.” She sips on the tea, grabbing a small scarf and wrapping two jars of marijuana inside to conceal in her purse. “In case I need it.” Leaving her with a vape pen and cartridge for the ride. The pen leaves little trace of smell and is easily concealable. The pen lives in her purse along with other medications.
Those managing chronic pain have grave concerns with treatment and diagnosis. Most are required to travel across state lines to see a specialist. “I know that what I am doing is technically illegal and it is weird to use something that is legal in my state, but crossing state lines is prohibited.” Later this morning Brie has an appointment in Long Island with Dr. B. Brie’s EDS caused the development of Craniocervical Instability (basically her head is too heavy for her neck). As the brain pushes on her C1 vertebrae she experiences dizziness, loss of speech, muscle numbness, insomnia and more. She is on her way to see if she qualifies for a neck fusion surgery which would alleviate her instability.
Pain doesn’t discriminate based on my geographical location. The choice becomes suffer or break the law. Standing in the way is the classification of marijuana as a Schedule I drug.
The Controlled Substances Act of 1970 placed marijuana, LSD, and heroin as Schedule I drugs, meaning they have the highest abuse potential and no accepted medical use. Today marijuana is used medically in twenty states and recreationally in others; it is used to help treat pain, stress, inflammation, anxiety, hunger, sleep, and more. According to the New England Medical Journal in 2013, more than 76% of doctors are pro medicinal marijuana because it helps reduce the opioid intake, such as fentanyl.
According to Connecticut’s Chief Medical Examiner, in the first half of 2017 fentanyl (a Schedule II drug) was responsible for 55% of overdoses. The danger with fentanyl is that the ratio of safe use to overdose is incredibly small. Doctors, like Jane C. Ballantyne and Mark D. Sullivan, who co-wrote a article for The New England Journal of Medicine, “The Wrong Metric,” have given up on opioids as a way to treat pain and go on to say chronic pain patients should learn to live with their situation. “But is a reduction in pain intensity the right goal for the treatment of chronic pain? We have watched as opioids have been used with increasing frequency and in escalating doses in an attempt to drive down pain scores — all the while increasing rates of toxic drug effects, exposing vulnerable populations to risk, and failing to relieve the burden of chronic pain at the population level.”
Doctors often ask for patients to gauge their levels of pain on a scale from one to ten. According to the article, this method is outdated. There is no efficient relationship between the number on the pain scale to correct dosage of opioids. Those patients who suffer from chronic pain tend to depend on opioids and over time their medications often increase due to their body’s dependency. Drs. Ballantyne and Sullivan write, “For many patients, especially those who have become dependent on opioids, maintaining low pain scores requires continuous or escalating doses of opioids at the expense of worsening function and quality of life.” There is an increase in doctors who prescribe pot to patients like Brie to reduce the dependence on drugs like fentanyl. However, the article fails to attempt to answer, or even mention the question: if opioids are not adequately helping pain patients, then how are they to be treated?
There are doctors like Dr. James Crowley who educate the public on the benefits of marijuana. On September 30th 2017, the US Pain Foundation hosted a pain awareness event in Johnston, Rhode Island with speaker Dr. James Crowley. The topic: “The Emergence of Cannabis for Reducing Opioid Use and the Risks for Overdose in the Management of Severe Chronic Pain.” According to Dr. Crowley, the goal should be that medical marijuana works together with opioids to help reduce pain. Dr. Crowley is one of the 76% of doctors who favor medical marijuana. Doctors are in favor of reducing the amount of opioids made available but few are willing to accept the challenges that come with taking on a patient who suffers from chronic pain.
The car doors close and Brie is in the front passenger seat. She is equipped with a cannabis pen and tea with cannabis honey. She inhales a toke as the car leaves the driveway. The ride from East Windsor to Lake Success will take just over two hours and is sure to be filled with heavy traffic. She is hoping the cannabis honey will help ease the pain from the bumps and sudden stops. Like clockwork whenever we hit a bump she takes a hit. When we arrive near the NY border her body language changes. Her shoulders slouch, her face heavy. She says nothing, only stashes her pen away and polishes off her tea.
Brie is allotted the standard 2.5 ounces of medical marijuana per month. From plant, oil, edibles, concentrates, the choice of consumption is her own. The effects depend on consumption, strain, and usage. Edibles, like the honey, can produce effects that last around six hours; while smoking may only give thirty minutes of relief.
Brie carries a purple tote bag into the doctor’s office building. Once inside she checks in with the receptionist who tells her it will be fifteen minutes. She takes a seat and opens her bag, checks the timer on her medicine caps, and takes out a bundle of yarn. “Don’t forget to record the appointment,” Brie tells her mom. A voice echoes throughout the waiting room. “The doctor will see you now.” She gathers her blue scarf and enters the doctor’s office. Her life’s milestones are measured by the success of doctors visits.
Behind a desk, staring at an iMac is Dr. B. On the screen are the most recent images of Brie’s neck. The doctor points to the numbers on screen; he is looking for cervical numbers that would indicate she is a typical candidate for surgery; she is not.
Brie is special even by special standards. Out of the 100 surgeries a year Dr. B performs he may take on three exceptional cases; Brie is one of those cases. The doctor orders an invasive cervical traction; a pre surgical invasion that will determine if a neck fusion will provide the support for her neck. The process involves placing a metal bar into the sides of her skull that connect overhead. At which point the doctors will manipulate her head to see if she gains more stability. If her symptoms subside while under this, then a neck fusion has the ability to relieve the pressure put on her C1 vertebrae, which results in dizziness, balance issues, muscle numbness, and insomnia. After surgery she will be required to stay in New York until she regains enough strength in her neck to handle the ride back home.
Brie exits the building and heads toward the vehicle. She immediately opens Facebook; her support group is eager to hear the results. She recaps the journey for them in all the detail she can, since one or more of them is likely to share a similar experience. “I finally feel like I have direction.” As the car begins to travel to its next destination her posture sinks into the seat; her face sullen. “I still don’t have any answers.”
The ICT is scheduled for December 6th, by then she will have three months left of marijuana. Her hands tremble and eyes begin to tear, but she holds it back. She tries to speak but the words fail to materialize. The laws will not have changed by then and her pain will still persist.
She takes another drag of her vape pen. Her eyes gaze out the window; her body eases as smoke exhales from her mouth. She reaches for the recording of the appointment and stares blankly at the screen a moment before her thumb presses the play button. At the same time, she holds her appointment organizer in hand circling December 6th. The hourglass is running out of sand.