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By Donna Viceroy Chicago Tribune
one point, Joy Grainge was so convinced she was going to die, she packed up her two sons and took them to Portugal to tour castles.
"I was 49 years old and sure I'd be dead within two years," she said. "I'd always wanted to take them to Europe, so I did. We saw castle after castle after castle."
Grainge, 53, of Homewood, who suffers from chronic severe pain, now relies on a few puffs of cannabis to get through her day.
"I don't smoke very often," she said. "You can vaporize it now so that you're inhaling the heated vapors as opposed to inhaling the smoke. That's a little better for your lungs. And I also use a topical oil that you can rub right on and it helps a lot on my muscles."
How does she get the marijuana?
"Like everybody else. There's a kid down the street who knows somebody," she said.
The fact that she's, in essence, a lawbreaker irritates her, but at the same time she finds herself an expert on the Illinois Compassionate Use of Medical Cannabis Pilot Program, aimed at making medical marijuana legal and available to patients who need it across the state.
While the intricacies of that program are bandied about in the legislature, Grainge and others cope as best they can.
"I feel like a second-class citizen. And that's how a lot of patients feel," she said. "We want people to know we're not second-class citizens. Patients are not criminals. We're just normal people. This is a medicine that works for us with the fewest side effects possible.
Grainge, who sees herself as "kind of the typical patient – middle-aged, involved in my church, involved in the school district," recently began hosting monthly meetings for others interested in learning more about medical cannabis and its slow journey to legal availability in Illinois. The meetings are at her church, the Unitarian Universal Community Church in Park Forest.
The next meeting is at noon Sunday. On the agenda: legislation and policy, Post Traumatic Stress Disorder, hemp seed nutrition and veterans' issues.
Grainge also is involved with Americans for Safe Access, a national organization dedicated to ensuring safe and legal access to cannabis for therapeutic uses and research. On March 31, "Lobby Day," she traveled to Washington D.C. to meet with legislators and push for expanded legislation.
"I'm trying to dispel a lot of myths and misunderstandings and confusion surrounding medical cannabis," she said.
She is buoyed by recent progress and hopeful that soon she'll be able to legally get "the safest medication out there" for her condition.
Attendance at her meetings, which are typically the first Sunday of the month but April's was moved back a week because of Easter, is between five and eight people and they typically want to know how to use cannabis, the effects of different varieties and what the state is doing to make it available. She's also addressed safety and efficacy, and how to talk to your family and doctor about it.
People tell her they are frustrated by how slowly the process is evolving and by the amount of paperwork involved in registering to be a medical marijuana recipient, she said.
Melaney Arnold, spokesperson for the Illinois Dept. of Public Health, which oversees program registration, said as of April 1, some 2,700 people have submitted applications, of which 2,000 have been approved. But nearly 20,000 people have logged onto the state's electronic system either to access information or start the application process, she said.
Some, like Grainge, have yet to apply because they take issue with the required background check and fingerprinting.
"I don't have to be fingerprinted for any other medication," she said. "If I have to (be fingerprinted), I will, but I'm hoping I don't have to."
Chris Brown, spokesperson for Americans for Safe Access, said Grainge's story is not uncommon.
"We have a lot of people who can't get access, either because the law forbids it or because of a very limited set of conditions," Brown said.
Many, he added, have no choice but "to commit acts of civil disobedience to get the medication they need."
On its recent state report card, the association gave Illinois a grade of D+.
Illinois' list of qualifying conditions includes lupus, cancer, AIDs, multiple sclerosis and Parkinson's disease. Grainge and others would like to see migraines, PTSD and PMS added.
The Illinois Medical Cannabis Advisory Board is considering adding 14 new conditions. It meets May 4.
Meanwhile, progress is being made on establishing cultivation and dispensary sites across the state. Two more dispensary locations were approved downstate this week.
Arnold said availability at dispensaries depends on how quickly cultivators are able to get up and running.
Dan Linn, executive director of the Illinois chapter of the National Organization for the Reform of Marijuana Laws (NORML), said in Cook County, outside of Chicago, there are 11 approved dispensary sites. About half are in the south suburbs and include Lemont, Palos, Calumet, Worth, Bloom and Thornton townships.
Grainge said there also is concern that once medical cannabis is available, its cost will be exorbitant. But Linn said he does not expect costs to be comparable to what they are on the street.
If legal cannabis is too cheap, he said, people will buy it and sell it on the street; if it's too expensive, patients will turn to illegal vendors to get it for less, he said.
However plodding the system, Grainge has done a complete-180 in her outlook on life since she felt something pop in her neck and finally received a diagnosis of degenerative disc disease.
"At the time, my oldest was in 3rd grade. It was traumatic. I had to send him to (live with) his dad in Alaska for a while because the pain was just so intense," she said.
Her doctor told her, "If you don't stop taking the morphine and Vicodin, your guts are going to burst, it could happen at any moment," she said.
"I went home and tried to taper off, but after two weeks I decided to go cold turkey," she said.
Daily puffs of cannabis – sometimes it only takes two or three, she said – helped her cope with the pain. And still do.
"In the last three years, we've seen a huge shift in understanding from both Democrats and Republicans. They're understanding that everybody gets sick. That this (medical cannabis) can help everybody potentially. It's not just for one group. It has the potential to help lots and lots of people," she said.
The Unitarian Universalist Community Church is at 70 Sycamore, Park Forest; 708-481-5339; uuccpf.org.