By Coral Ceiley
Ankylosing Spondylitis is an auto-immune disorder that causes calcification of the joints. It is more common among men and is usually detected in early adulthood. I recently interviewed my friend, JJ Burns, who has this disease and manages it with cannabis.
Coral Ceiley: Tell us about yourself!
JJ Burns: I am 31 years old. I grew up on a horse ranch in southern California way back before the days of the internet. Back then, kids had to find ways to entertain themselves. We didn’t have all that YouTube and Facebook stuff to drool over all day. I spent a lot of time drawing, skateboarding, playing sports, hiking, fishing, and beating up my little sister. After high school, I became a security guard, got married, bought a house, new car, five dogs, three cats, and even had a little grow room where I grew my first indoor crop of sweet sticky marijuana. Life was good. My wife and I had a whole house full of material crap that we were really proud of.
In 2009, we fell victim to a refinance scam like so many others did when the housing bubble burst like a corndog that’s been in the microwave too long. On the verge of being homeless, we got a travel trailer, loaded it full of as much of our material crap as we could, the five dogs, three cats, and headed for our “bug out property” that we had just finished paying off. “When it rains it pours.” And in Shasta County at 2,000 feet elevation, in late November, it rains, pours, hails, snows; if the hurricane force winds, falling pine trees, and cold don’t kill you, there’s lots of time to plan your summer garden.
We thought we were going to live off the fat of the land. Be careful what you wish for! Yeah, living off the fat of the land sucks! By summer, I had lost about 75 lbs. We were eating tomato sandwiches, trucking in our own water, and basically trying not to die in the 120-degree heat. Luckily I had made friends with the neighbors. They had come over that spring and gifted me 40 medical marijuana clones! We had Hindu Skunk, Chemdawg, Headband, and Kryptonite. Even though life was rough, I felt like I had found my true calling. Growing weed up on a mountain with the morning dew licking at my face, the sun coming up over the tall pines, and mighty Mount Shasta out there on the horizon. It was the greatest feeling I’ve ever had. I felt so small, and yet, so big. Like I was part of something much bigger than my mind could ever imagine. I was home
C: How were you diagnosed?
JJ: After the crop was harvested, trimmed, and dried I got a job working for a goat farmer. I noticed that my arms and legs were stiff all the time, like the feeling you get after you work out too hard at the gym. I went to the doctor. They drew my blood. A week later, I was informed that I had Ankylosing Spondylitis, an autoimmune deficiency that causes chronic pain, swollen joints, and fatigue. It was once known as “bamboo spine.” I had no idea how to process this information. I was very scared.
C: How has your life changed?
JJ: A few months after I was diagnosed, I had to quit my job at the goat farm. The pain in my arms and legs and the fatigue was getting out of control. Most days I could barely get out of bed. My doctor prescribed me ibuprofen, but no pain pills because she didn’t want to start me down that road. Other than that, she told me that I should try to get light exercise when I could. She told me that there was not much else she could do for me. Meanwhile, winter was setting in. I had firewood to split to heat my house. No matter how much ibuprofen I took, the pain got worse every day. The cold weather made my whole body stiff. Cutting firewood was very painful. Basically, everything was very painful.
C: Have you received adequate health care?
JJ: The doctor wouldn’t give me pain pills, so I had to find a way to deal with the pain, or I felt like I might as well just kill myself. What’s the point of living if you’re suffering? I started smoking a joint every couple hours. I didn’t help with the fatigue, but it made the pain bearable. It also put me into a better mindset. I started reading everything I could about my condition. There were lots of alternative and holistic approaches recommended online. I’ve tried many of them, but good old weed is the best. I started making edibles, tinctures, RSO (thank you Rick), and smoked many, many joints. I told my doctor I was using pot to deal with my pain. She said she didn’t know much about cannabis except that it kills brain cells. Yeah.
C: Are you able to support yourself or do you get disability?
JJ: Well, I really shouldn’t answer that one because it would incriminate me! Back then, I sure couldn’t; I had to go on food stamps and medical. I moved to a trailer park with my dad who is disabled. By the end of the month, we were usually eating hotdogs and top ramen every night for dinner. I applied for disability and was denied. I don’t want to try to explain how angry that made me. That was five years ago. I have applied and reapplied many times. Somehow, I’ve survived without a job. I have applied for jobs, but nobody wants to hire me because I can’t stand up straight. I can’t stand for too long without needing to sit-down, and I can’t lift 50 pounds without risking a broken spine. Currently, I am a student of alternative and complementary medicine, I still live in a trailer with my dad, and I still eat hot dogs and top ramen for dinner.
C: Do you have any advice for others?
JJ: Do what you can, when you can. Don’t blame or hate or be angry because your mindset is everything. Stay high!
Learn, adapt, and move forward. Now is now, it’s not forever. Never give up! Listen to good music as much as possible.
