Tag: society

It’s Been Two Years Since My Autism Revelations

Published on by megglesworthLeave a comment

I’VE YET TO REACH THRIVING, BUT I’M SURE WORKING ON IT.

July 24,2022

Photo by Randy Jacob on Unsplash

Next month will be two years since I was diagnosed with autism at 37 years old. I’d spent the prior three months going through the self-diagnosis process, every night I was plagued with the truth of experiences I’d reframed with delusional optimism, lied to myself about, or full-out repressed altogether. They haunted me all night long, smashing into my mind with heartbreaking clarity:

They weren’t really laughing with me. That’s what they meant by “you’re…funny,” without a smile. When they said I was brave for doing things that seemed normal to me, it was probably because they knew I’d get made fun of for it. Accepting the struggles at work and school where people accused me of not trying, there were real — physiological — reasons for it, but feeling powerless because I can’t redo my life and choose a more realistic and sustainable path for my neurological needs, and now my brain’s been run into the ground.

Daytimes were better though. I’d cry through meditation most mornings, shaking off the night, but by the end of my mandatory wellness stuffs that help lower fibromyalgia pain, I was amped to get back into learning about my brain, talking to other autistic people about our brains and brain issues, and starting to write about the things I’d learned.

It felt wonderful to finally know I wasn’t just someone who sucked at being human, I’m actually just of a different neurotype — my brain and nervous system have different needs, and I needed to start taking them seriously.

But the thing is, I don’t live in a society that’s allowed me to do so.

The matter of how to pay for one’s life is a huge problem in the autistic community, with nearly 80% of us unemployed. I was able to semi-skate by in my 20s, somehow graduating from college and getting an office job around the time my student loans became due. But the jobs never lasted, sometimes due to the economy and sometimes because of me, struggling to the point of autistic burnout and/or fibromyalgia flares (which I thought were a weirdly frequent flu) so having to quit or being let go.

There was so much needless brain drainage in Office-world. In order to be taken seriously, I had to sit straight with my feet on the ground (gah! musthavelegsup!), I couldn’t defend myself from the brutal 60* AC with a blanket, had to wear uncomfortable clothing, sit under painful fluorescent lights, and try to focus on menial tasks despite someone eating freakin’ microwaved fish in the next cubicle, someone else playing pop music just loud enough for me to hear, and the constant chatter of small talk betwixt the cubes.

And don’t even think of wearing headphones. Those are anti-social.

But it was much better than retail and service, where the audio cacophony was even worse and there was soooo much more talking about nothing — plus, numbers mix up in my head, I have very little working memory, and I confuse faces and names! (I tried bartending and trying to keep track of whose tab was whose nearly sent me into tears. Cocktail waitressing was also a nightmare.) Those experiences are probably what pushed me to finish college, the hope of a less draining way to earn.*
* These are my particular autistic struggles, other autists with different spiky skill sets are probably fabulous at these things.

Anyways, a job loss in 2020 is what sent my negative autistic traits so high that I finally had to accept that being a Highly Sensitive Person definitely didn’t cover this shit.

The publication I was writing for lost an investor due to COVID, which at least meant that I qualified for unemployment despite technically being a freelancer. But that process was a maddening struggle (it was like 5 months to get the first payment) and all of my neighbors seemed to have lost work too, everyone in my crowded block was suddenly home all the time, often playing music at “fuck this shit” levels.

Sensory sensitivities skyrocketed and meltdowns became regular, sending me into desperation for answers that led to my autism revelations, then Level 2 diagnosis on August 10th, 2020. (Self-diagnosis is totally acceptable in the community, but I felt desperate for proof and was lucky to get an affordable-ish referral.) It was a bittersweet confirmation, a long list of what are essentially faults in our society, things I’d tried to hide my whole life. My assessor was shocked I’d gone so long without a diagnosis, which makes me wonder if I ever did pass as “normal,” or if people found me to be “off” all along.

But it was also incredibly validating. I’m not “off,” I am autistic and have millions of neurokin! And with clinical reasons for why I am the way I am, I hoped for more understanding and real connection in longstanding relationships once I told people the news. Instead, coming out as autistic largely brought the opposite. While there were some wonderfully accepting people, it was also a time when I finally got it into my head that people I thought I was close to for decades, family even, weren’t ever going to see me as one of them. They’d given up on me, full-stop.

The personal rejection combined with online bullying, continued auditory harassment, and old-fashioned “make the naive person do cringe shit just because she will” teasing led to a complete mental breakdown later that month. Burnout got worse after that. I’d have encouraging months where I felt like I was coming out of it, but in early 2021 I started experiencing nonverbal days, sometimes my brain was too exhausted to even think. When it was really bad I felt like I was getting sucked into myself and might not come back. It was terrifying.

I had a few encouraging months, but stress and trauma overwhelmed me again I had one more mental break last summer, which was absolutely soul-crushing and left me with a head injury that busted a hole into my wall. After that, my functionality was worse than it’d ever been, I couldn’t even make simple phone calls or figure out my Roku.

I thank the Universes that unemployment benefits, COVID rental relief funds, and the generosity of friends and strangers helped me get through the worst of times. Finally accepting that I’d lost people from my life over the last couple of years seemed to give me the room to open up to more supportive people I didn’t know all that well, just a couple of friends (three now, two long-distance) — but the routine connection and emotional support have helped more than all the therapists I’ve seen combined.

In late 2021, I finally had enough functionality to do something besides write about autism and started applying to the plethora of work-from-home positions that’d become available since the pandemic. I thought, finally a way to work without all the needless environmental drainage! Though I’m very grateful for the freelance work I’ve gotten, it hasn’t been a stable income and I hoped for a shot at benefits, a living wage salary, and some security.

But after a few months and so many cover letters I’ve literally cried about it (many times), I realized the proverbial fish weren’t biting so decided to examine my online presence. I’d spent years freelance writing through the stressful process of trying to get disability benefits, and I put out some very emotionally raw work, as well as writing all about my autistic experiences here with my full name — it’s work that I’m proud of, work that I know helped people because they took the time to tell me so. But, as a friend gently reminded me, that stuff can also scare employers off.

I knew they were right, and I felt silly for not realizing sooner, but as I took down and/or anonymized my work I felt like I was erasing the person I’d finally allowed myself to grow into. It was an emotional thing for me. The need for security is real though. I don’t have support (disability paid ~2 of the 7 years I’ve been homebound ill, and most of it went to debt), so I need to pay to live somehow. You gotta do what you gotta do.

Unfortunately, after greying out my internet presence, I only hooked one fish and it got loose after the second round in the hiring process. A while later I did wind up with a freelance gig, ironically at an organization that serves disabled kiddos, referred by someone who knew I’m autistic.

I was so excited but it wasn’t at all what I thought it would be and quickly turned into a communication disaster. I’m used to freelance content writing being like, “here’s the title, keywords, and word rate — go for it!” but this was completely different, it was like filling out a form, something that makes my brain go berserker. Very little analytical thinking, lots of filling in blanks, following directions, endless emails, and interviewing people with questions I didn’t get to write.

It was very typical of my office experiences, sans the smelly lunches, and I failed miserably; everything that must be time-saving for their other writers only added to mine, and asking for clarification led to my supervisor seeming to think I was needy, so I asked less, and eventually they took the essays before I could even finish them — two hours from completion to me, I’d finally gotten to the easy part (writing!) but I imagine finishing must have taken them much longer. It seemed ridiculous, more so after I got an email that contradicted every reassurance I’d been offered when expressing concerns in Zoom meetings. It felt like I was thrown under the bus before I even got where I was going.

In a way, I’m glad that it wasn’t a normal freelance gig because I needed to (re)learn that limit — traditional work situations just don’t work for me, even from home, and especially not now. Still, I’ve been floundering since. When I started the gig I was definitely still in burnout, far from the bushy-tailed optimistic finally-feeling-like-me-again person I was when I started my job hunt, but I was hanging in there okay.

Since then, not so much.

I’m struggling with my brain functionality, in the literal dark most of the time due to sensory issues — and now it’s been two years of autistic burnout. Is this my life now? Am I ever going to get better? At least better enough to pay for life and like maybe go to lunch with a friend on occasion?

And I still feel all greyed-out, both internally and in my online expression. Those articles and accounts are still gone or anon’d, and I’m not sure I should put my name back on them. People aren’t as good, kind, and open-minded as I presumed. At large, it seems we’re kind of horrible. My naivety remains cruelly intact, but I’ve turned into a cynic at the same time and I don’t know what to do with myself.

The times I feel strongest and most hopeful are when I decide that advocacy writing for autism acceptance, chronic illness awareness, and social change are my best shot. I’ve always had a book in me and started writing it seven years ago, besides a handful of not-good pitches and my last article here, it’s been about all I can work on lately; executive malfunction’s been intense, my brain’s like “special interest or nap, bitch, I’m just too fucking tired.”

Oh, but my mind. (It’s a strange thing to have your neurology disagree with your mind, but as a reader of ArtfullyAutistic, you’re probably all too familiar with the conundrum.) My mind says advocacy pays dookie and isolates you from societal acceptance/success, but maybe that’s just what it’s been conditioned to think. And if it were true, maybe changing times means it’s not anymore. I have found several literary agents specifically seeking neurodivergent writers, so that helps modulate Cynic Mind a bit.

Plus, I’ve been trying to squeeze myself into the norm for decades to utter failure and complete body-mind-spirit breakdown. I’m tired of throwing myself against that wall, it’s fucking broken me and I can’t break much more without shattering completely.

Writing this has helped, but I still don’t have a clear plan for what to do. I do need to start “coloring myself back in” so to speak. Looking back at old writing and social media posts, even ones where I was homeless, there was a sparkle to my words and in my eyes. I’m not sure where it’s gone, or if it will come back. I know it had to do with hope though.

I’ve just got to take it day by day. Hard thing by hard thing. Small joy by small joy.

And, eventually, I’ll find that sparkle again and get back to writing in a more “let’s take on the world!” fashion — but for now, there’s my painfully honest take on my first two years of autistic self-knowledge.

I’m broken, really broken. But I don’t wish to shatter.

Photo by Faris Mohammed on Unsplash

Professional Communication Tips for NDs

Published on by megglesworthLeave a comment

A lil’ wisdom gained the hard way.

Jun 18, 2022

Photo by Tim Gouw on Unsplash

Professional communication isn’t a breeze for most people, but when it’s between a group of people who are neurotypical and you’re neurodivergent, the potential for misunderstandings and struggle get even trickier.

It can be really defeating to get through the doors that often hamper NDs and other spoonies from success — resume gaps, too many jobs, functionality limitations, etc. — just to have it all dissolve for reasons that leave you bewildered and crushed.

Entering a group of NT people who already know each other and have established professional dynamics is so overwhelmingly complicated to me, my goodness, but this post shares a few tips learned from trying to re-enter the world of professional teams after years of flying basically solo. I’m autistic and have ADHD (AuDHD), so that’s the ND perspective I’m offering — I welcome comments to add to the wisdom, from similarly wired folks as well as other neurotypes. We can’t have too much wisdom. (I also happened upon a great Twitter thread with similar aims, there’s highlights from it at the end.)

Our time and energy are precious, and wasting it on a bad professional fit, or losing a potentially good one due to miscommunication is fiercely disheartening. In hopes of someone else not learning the hard way, here are some tips on ways to avoid ill-suited situations and/or navigate the challenges of professional communication while neurodivergent.

6 Professional Communication Tips for NDs
  1. Know Your Needs and Limits. It’s important to be honest with ourselves about what our limits and needs are, I’m of the rosy-eyed persuasion, very prone to overestimating what I can take on sustainably health/functionality-wise. Positivity’s got a great rep, but taking on more than our systems can handle means burnout — which scarily increases disabling traits and steals access to ND perks, like autistic hyperfocus. 
    .
    It’s often hard for people to admit their needs and limits, but when you’re atypical there are increased odds of pushback bc folks just don’t get it. And avoiding that potential social issue can make just pushing through the internal struggle incredibly alluring, especially if you’re desperately in need of an income, and/or insurance. However, learning the hard way can mean severe neurological punishment, so it’s important to really consider if your neurology is up to the challenge.
  2. Ask Interview Questions Accordingly. In addition to screening jobs before you apply, ask very specific questions during interviews to distinguish if it’s right for you. Questions pertaining to financial and health sustainability can be hard to ask, but it’s just as important for the potential employer to be honest about the actual demands and expectations of the job as it is for us to be about our limitations. Try to fight any people-pleasing urges, don’t just assume it will be fine, and make sure you have the information you need (as well as making sure you’ve presented your strengths and all that usual interview jazz).
  3. Masking: Ooooh, masking. I was adamantly against masking my ND traits when I first learned masking had a huge role in crushing my functionality, and while I’m still infuriated that it’s demanded of us — it really can help when navigating NT communication.
    .
    People can be judgy, and they can come to damning conclusions without even asking any questions. So, now I have a rule to never take a meeting without preparing to socially mask first, as I’ve found just taking twenty minutes on presentation (appearance) and getting in a “NT Communication Time” headspace has a positive effect on reactions and helps me people more effectively.
    .
    Howevvvver, I haven’t been masking right. Growing up, I learned how to seem likable to NTs, asking them lots of questions, being positive, agreeable, etc., but that really only works for first impressions. I wish I’d learned the important thing is to demonstrate competence and communicate effectively. (I blame the patriarchy.) Tips welcome.
  4. Just to Recap and Make Sure We’re On The Same Page: Take careful notes in meetings and always follow up afterward with takeaways/action confirmation emails. It’s good to have expectations in writing as NTs don’t always say what quite they mean, and autists tend to take things literally. Also, people often lie and/or omit relevant truths to their bosses to reroute blame. There’s a whole phrase for it in Office World, “throwing people under the bus.” So, yeah, document that ish.
  5. To Cc: or Not to Cc: If wondering if it’s okay to add an upper person/boss on email, use extreme caution. (Or maybe just don’t.) Hierarchical communication norms are a mysterious maze, full of traps that seem like common sense or courtesy. According to the Harvard Business Review, Cc’ing the boss makes co-workers trust you less, which can lead to all kinds of trouble.
  6. Don’t Avoid Group Channels: Office communication channels like Slack are daunting for me because group dynamics are overwhelming in any form (and there are already so many!), but also it can be hard to get the info I actually need among all the messages that aren’t related to what I’m doing — they can be very busy, messy, and excessively interruptive/distracting, or the opposite, so inactive that I don’t get the notification and miss something important. But there are often professional consequences for not having your voice present, so if there’s a next time I’ll be sure to figure out a process to make it work for me.

The day I wrote the original list for myself, the internet kindly confirmed that I’m not alone in my frustration and struggle — I happened to check Twitter right in time to catch the fabulous autist YouTuber Purple Ella start a thread asking for similar advice, here’s her post and some of my favorite answers:

@liam1408: Developed a reputation of being a technical expert, always offering an honest opinion and able to speak truth no matter to whom. But took years of learning how to cope with the politics that flew over my head, ended up ignoring it, which was the best approach.

@polymathical: I just focus on being true to myself and improving myself in the ways that are fulfilling for me. I hope to find more people that vibe with my authentic self this way. I won’t be successful in the way others are, but I will be fulfilled.

@BrandNewAutie: I think years of masking made me somewhat ok at all of that, with many gaffes of course! It’s the aftermath and long-term impacts of masking that became destructive for me. Now to an extent I can turn it on because I’m learning how and when to unmask. I hope that makes sense?

@level80: Well as a neurodivergent person, my answer is by choosing self-employed careers (been doing paid work now for around 28 years) where there is a very small percentage of work time is face to face social interaction and the rest (90%-99%) is just getting on with the job on my own.

@MarcelPotter9: Just be yourself and let your natural talents and skills shine. A good boss will want a balanced team with a good mix of people & this will enable your strengths to develop and shine. I get on so well with my boss now, I’m the only one who can tell her off! 🙂

@ADHD_Coach_UK: I cope by doing things I am passionate about, and being open about my neurotype. Set expectations from me and what can do to help me. In my young days I progresses thru sheer sweat and tears, but that only led to unrealised potential. Wish I knew back then!

Why isn’t the endocannabinoid system taught in medical schools?

Published on by megglesworthLeave a comment

Meg Hartley for Leafly
Published on January 10, 2020· Last updated July 28, 2020

I am currently dependent on medical cannabis, and despite loving the plant, I’m kinda bitter about this fact. And it’s not the usual lamenting of “Why me?” that so often goes with illness; it’s because the medical professionals I encounter have little to offer about the origin and treatment of my disease, fibromyalgia. A major reason that they’re at a loss with it—and so many chronic illnesses like it—is because it may be sourced in the endocannabinoid system (ECS).

As a Leafly reader, you might already know that the ECS is a bodily system made of receptors located throughout the body and that it works with all other systems to maintain homeostasis, or optimal functionality.

But did you know that this vital system isn’t covered in medical school despite the fact that studies worldwide have been articulating its prowess since 1992?

Medical schools are “too full” for additional information

And do you know what their primary reason is? Because they say they “don’t have time to teach it.” That’s right—med schools are apparently no longer open to integrating new science into their curriculums. We reached out to many medical schools for comment, but repeated emails went without response.

“The typical response is, ‘What will we eliminate?’ However, that ignores the importance of this system and its fundamental role in regulating physiology in every aspect.”

According to Dr. Ethan Russo, board-certified neurologist and psychopharmacology researcher, the common response is that they’d have to remove something else from the curriculum to make room for it.

According to Dr. Russo, “The medical curriculum is just jam-packed. I went to med school back in the ‘70s, and even at that point there was just no slack in the schedule. What one has to cram into particularly the first couple years of basic science, is rather astounding. And now there’s been an additional 40 years of scientific discovery that also has to be incorporated. Administrators are always going to be defensive about that. The typical response is, ‘What will we eliminate?’ However, that ignores the scientific importance of this system and its fundamental role in regulating physiology in every aspect.”

One would hope that the response to realizing there is a vital bodily system missing from medical school curriculum would be something thoughtful, like, “This system works with all of the other bodily systems and is essential to maintaining health in the body—maybe it’s time to reassess and reorganize.”

But, alas, the party-line solution is actually to just not teach another piece of medicine, which would remove it from practice. It’s as if medicine goes into a tool belt, and rather than reconfiguring a more suitable tool belt when full—they’d instead just toss aside an irreplaceable tool.

The ECS is integral to the function of all the “major” systems

Dr. Russo says that the idea of not educating doctors on the ECS is incomprehensible because it is fundamental to how our bodies work.“A prime example is that there are more cannabinoid receptors in the brain than there are for all of the neurotransmitters put together,” he said.

“One could easily argue that you can’t understand how neurotransmitters in the brain work without knowledge of the endocannabinoid system.”

As you’ve probably ascertained, this is a fact with significant implications. He continues, “One could easily argue that you can’t understand how neurotransmitters in the brain work without knowledge of the ECS.” Additionally, he confirmed this could also imply that there are more opportunities for cannabis to work with the body than pharmaceuticals.

The ECS is also responsible for maintaining the homeostasis of all of the other bodily systems—which is a fancy way of saying that it keeps balance in the other systems, ensuring that they are functioning optimally. It’s also often described simply as the way the brain communicates with the body. Or, as Russo put it in our interview, “Everything in the body is connected, and this is the glue.”

Because the ECS appears to regulate actually recognized bodily systems, many things go awry when it doesn’t function correctly. Endocannabinoids have been observed to directly and indirectly influence a variety of physiological systems that control appetite, pain, inflammation, thermoregulation, intraocular pressure, sensation, muscle control, energy balance, metabolism, sleep health, stress responses, motivation/reward, mood, and memory.

These functions are not minor details—if you were to lose even a single one of these abilities, it could significantly alter your daily life. Chronic illnesses, which last three months or longer and are generally considered “incurable,” affect 40% of Americans. Why is it that so many of our bodies are afflicted with conditions that modern medicine cannot do anything to absolve?

Could it be that we’re missing a crucial piece of the puzzle? Surely, there must be something else going on.

What do cannabis and pharmaceuticals have to do with it?

When asked why the ECS isn’t being taught in medical schools, another common response was that there are presently very few medications that interact with it—but how will there ever be if the medical community doesn’t even regard it in the first place? And why does it matter, anyways—do doctors only need to know about bodily systems that can be treated via the pharmaceutical industry? (And even the answer there is a plutocratic ‘yes,’ then do the available synthetic cannabinoids not count?)

These are apparently not questions that are often discussed in the medical community. The basic consensus seems to be that though medical students ought to be taught about all illnesses—not just those that there are presently pharmaceuticals for—that’s simply not how it works.

Another factor is, of course, the federally-illegal status of the plant that works so adeptly with the ECS; still holding its ancient and never-been-true title of ”Schedule I–Drug with no currently accepted medical use.” But since the ECS generally functions without the help of cannabis (thanks to our naturally occurring endogenous cannabinoids), one wonders why this is show-stoppingly relevant—again, shouldn’t doctors need to know about bodily systems that don’t already have viable medications? Isn’t that all the more reason they should be trained in what we do know about the ECS, so they may help patients keep the vulnerable system unharmed?

This next revelation will not surprise you: According to Russo, stigma around cannabis and a lack of funding as a result also appear to play a role in this reckless and willful knowledge gap, “One has to imagine that a prejudice against cannabis, fear of cannabis, and lack of funding is spilling over into a pejorative effect on education about the endocannabinoid system.”

Hope and change

Even though Russo says that grad students rarely want him as a mentor, some colleges are hedging their bets that tomorrow’s generation will have a different take. The University of Maryland School of Pharmacy is one such school, now offering a Master of Science (MS) in Medical Cannabis Science and Therapeutics. Leafly talked with Andrew Coop, PhD, their Professor and Associate Dean for Academic Affairs, who seems hopeful that logical changes in this area are on the way.

“The reason we started the program was because so few programs focus on the health benefits of marijuana,” Coop said, “the pluses, the minuses, the strengths, where further research needs to go, where the indications have good strong evidence, where there is no strong evidence. We are teaching 150 students at the master’s level to understand all aspects—but also to be able to critically assess what the current state of the art says and doesn’t say, and what further studies need to be formed so that we can move forward in a systematic manner.”

Their twelve courses cover a comprehensive range of topics, from an introduction to the history and culture of cannabis, to the highly technical “Genomics and Pharmacognosy,” to “Expert Seminars and Case Studies” where students identify knowledge gaps in the science and design an educational intervention.

Coop is looking forward to more sweeping changes in policy and legislation. “To me, the bottom line is that we need change at the federal level, such as the MORE Act, before we’ll see more med schools include it in their curriculum,” he said. “Once we get things such as the decriminalization of marjiuana, I predict more schools will include it. There is a want and a need for education in all aspects of marijuana.”

Until that day, those of us with diseases suspected to be sourced in ECS malfunction must wait. One day, researchers like Dr. Russo will have the resources to provide necessities like a diagnostic test for fibromyalgia, something he’s waiting on funding to get rolling on—a development that could change the lives of millions.

As Dr. Russo told us, “This failure to address ECS education appropriately is in unforgivable breach of scientific trust and a major disservice to the public health.” 

What it’s like to be a kid who medicates with cannabis

Published on by megglesworthLeave a comment

Meg Hartley for Leafly
Published on January 15, 2020 • Last updated July 28, 2020

It’s awful that there are sick children in this world, that someone so young could already be tied to grown-up matters like mandatory daily medicine. Unfortunately, it’s a very real situation for many families, and its complications are made considerably more so when that medicine is federally illegal. But, due to the extensive nature of the endocannabinoid system (ECS), cannabis can be used to fight many diseases—and many of these ailments can affect people of all ages, not just adults.

We talked with a couple of families with children who regularly medicate with cannabis, aiming to get a picture at what this lifestyle is like, what kinds of challenges they face, and how cannabis has transformed their lives. We discovered stunning stories of improvement, innovation, and a couple of families who’ll make you wish there was a bigger word for “inspiring.”

Sophie Ryan, optic pathway glioma brain tumor

medical marijuana patient, children who medicate with cannabis, children and marijuana(Courtesy of the Ryan family)

Sophie Ryan was born October 3, 2012 a perfectly healthy baby girl. But it wasn’t even a year before an MRI diagnosed an optic pathway glioma brain tumor, which doesn’t normally shrink with chemo. Things didn’t look good. Then her parents created a Facebook page called “Prayers for Sophie,” and a friend put them in touch with Ricki Lake and Abby Epstein, who were filming Weed the People, a documentary about the possibility of cannabis oils treating cancer in pediatric patients.

In a phone interview with Leafly, Sophie’s mother, Tracy, told us that Sophie took her first cannabis medicine at 9 months old in the film—a drop of high-concentrated CBD and THC oil on top of her food before beginning chemo treatment. Because Sophie was just a baby, they had to watch her mannerisms to try and gauge dosing, but the only side effects they’ve noted was sleepiness at the beginning, and a higher appetite, which is perfect for a chemo patient.

After 13 months of chemo and high doses of cannabis oil, Sophie’s “unshrinkable” brain tumor was about 85 to 90% gone. Tracy shared with Leafly that even Sophie’s doctor, who was originally skeptical about cannabis, had to concede that cannabis must have helped.

Its’ not just in results that Sophie’s cannabis treatment differs from chemo, her parents note. In addition to being more expensive, Tracy said, “Chemotherapy makes you very sick, it destroys your immune system, it causes organ failure. They lose their hair, they get sores all over their bodies and inside their mouths… Sophie was getting chemo burns when she was in diapers and we’d have to use gloves so we wouldn’t get the chemo acids on our skin—it’s that horrible. And then you have cannabis, and it’s doing the opposite of all that.”

Fortunately, Tracy hasn’t gotten much judgement. She works to ensure that she’s a trusted voice, making sure she’s on top of research and bringing Sophie to lots of speaking engagements to show proof of how healthy she feels, despite chemo. (Tracy said Sophie is a natural and loves doing these events, with rare exceptions.)

After discovering the incredible ways cannabis could heal, Tracy decided to create her own business, CannaKids. They’re now selling high quality tinctures and syringes throughout California and are working on expanding to Canada and Australia, as well as starting a nationwide hemp line with 6-9 cannabinoids. Like many, legalization presented some significant issues, with Tracy sharing that her business “almost didn’t survive the costs and demands of legalization.” For instance, they have had to change the name because of laws about marketing cannabis to children; CKSoul is the new product line, and CannaKids will continue to operate as a non-commercial resource.

They’ve also started a foundation called Saving Sophie, which has raised $60k but Tracy said, “That’s like a week’s work in a laboratory. They’ll need about a half million to get rolling.” And the Ryans have also started a podcast to promote awareness and raise funds—check it out here.

Coltyn Turner, Crohn’s disease

medical marijuana patient, children who medicate with cannabis, children and marijuana(Courtesy of the Turner family)

Coltyn Turner developed Crohn’s disease when he was 11 years old, after a near-drowning incident led to a bacterial infection. For the next three years, he’d try various traditional treatments, which he and his mother, Wendy, say nearly killed him. In a phone interview with Leafly, Coltyn shared, “The pharmaceutical medications that I’ve tried [range from] pills that do absolutely nothing, to shots that gave me nosebleeds, profusely, for 15 minutes straight, [to] another chemo-like infusion treatment gave me medically-induced rheumatoid arthritis (RA) and lupus.”

You read that right. Coltyn and his family report that traditional medications left him with two more chronic illnesses, each capable of rendering a person debilitatingly ill on their own. Yet, there’s more.

“When I got introduced to cannabis, within the first two weeks I was already out of my wheelchair. I felt like a normal kid again.”

They eventually tried cannabis. “When I got introduced to cannabis, within the first two weeks I was already out of my wheelchair. I felt like a normal kid again,” Coltyn said.

And he’s got proof of the positive changes. “I [went from] 22 centimeters of inflamed bowel with skin lesions, with everything you can imagine—inflammation, ulcers, scar tissue, granulation lymphoma—to a normal colon; no active Crohn’s disease, just using cannabis. So not only did cannabis treat the pain, which is important, but it also took care of what was causing the pain. It also helps with the RA and lupus I got from the [pharmaceuticals].”

medical marijuana patient, children who medicate with cannabis, children and marijuana(Courtesy of the Turner family)

Coltyn is now 19 years old, having been on cannabis for five years. And his Crohn’s is in remission; they report hardly ever having to go to the doctor these days. He still occasionally gets symptom flares, but is able to control them by upping his cannabis dose during those times. They’ve a great handle on it these days, but they say there were some challenges early on.

Wendy said the main challenge is dosing and ensuring that Coltyn gets the right amount of cannabinoids without getting high. “We are constantly like, ‘How are you doing, how are you feeling?’” she said. “He must be really, really sick of it.”

But Coltyn isn’t phased. “Yeah, I am, but at the same time it’s very important because a lot of patients don’t really know their dose, especially earlier in their cannabis treatment, and you’re changing it pretty frequently,” he said. “When I first moved out of Colorado to start cannabis treatment, we kept a journal and wrote down every little thing that happened: what I ate that day, how many times I went to the bathroom–if I had a stick of gum, we wrote it down. Unfortunately that’s the only way to develop a regimen for people, through trial and error, trying everything under the sun until you find something that works best for you.”

Wendy shares that there were some learning curves on their path. “Sometimes we mess up. For instance, now we know to never give a Crohn’s patient THCV.”

Coltyn adds, “What we know about THCV is that it’s an appetite suppressant. For someone with a wasting syndrome, that’s not a good cannabinoid to have. But we didn’t figure it out until I lost 10 pounds. That’s the struggle with there being no research or anything.”

As far as medicating during school, Coltyn said, “Fortunately, I’ve been homeschooled my whole life, but there are kids who are having trouble having medicine in school. A lot of the time they aren’t even allowed to have it 200 or 1,000 feet from a school. There are kids with seizures who go to public school, and if they need a rescue med, they have to have their parent come to school, pick them up, drive off campus, administer it, then bring them back.”

Wendy said that legalization has affected this issue negatively. “These newly legalized states emerging and creating regulation issues in schools with zero tolerance laws. Coltyn attended school for 38 days and we took him out because we couldn’t deal with it. There’s not a feasible option for it, not even in college.”

She added that there is a student suing their school over this issue, and said it’s crazy that pharmaceuticals, which can kill you if abused, are allowed in school, but cannabis isn’t.

Wendy said that without interstate commerce, medicating can also be a challenging task when getting medical care. “Every person who has a medical card is a prisoner of that state,” she said. “Most of Coltyn’s doctors are across state lines in Missouri and the second we cross that state line, Coltyn is illegal. And if he were to break his arm or something, I would have to tell them that he’s medicated with THC. And I cannot give him those meds for Crohn’s disease if he were to have to stay in the hospital for this broken arm for more than a day. So, there we go, into a flare with his Crohn’s disease.”

When asked if they’ve faced much judgement for medicating Coltyn with cannabis, they happily report that they don’t. Tracy shared that it probably has a lot to do with her being an intimidating mom, ready to get into the facts and statistics with doctors and other medical professionals as needed.

medical marijuana patient, children who medicate with cannabis, children and marijuana(Courtesy of the Turner family)

And their advocacy for cannabis doesn’t end there. The Coltyn Turner Foundation is focused on research and raising the funds to get it done–their first project is a survey of Crohn’s patients using cannabis, which is aimed at getting solid data on how it’s working in their systems that can be used as a resource for other patients. “I felt like it was important, Coltyn said. “All the time I approach doctors and patients who don’t know that cannabis works, and the one thing they say is ‘there’s no research.’”

His mother added that that isn’t the whole truth, “One of the problems we have in the states is our ego, especially with these doctors who say ‘there’s no research,’ just because the research isn’t coming from the US, which has to go through the DEA and other enforcement agencies,” which, of course, aren’t big fans of approving studies with Schedule I drugs—an infuriatingly circular dilemma. But Coltyn’s up for the challenge.

“When the government doesn’t do something right, the people have to do it themselves,” he said. “I’d rather be illegally alive than legally dead.”

How Tarot Cards Saved My Life

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Meg Hartley for Ravishly

06.26.18

CW: graphic suicidal thoughts

I love the tarot. This deck of 78 archetype-based cards has been a guiding force in my life for a few years now. I start each day by drawing two cards for guidance, and then further consulting the deck sporadically with specific questions in mind. 

Last fall, one of those specific questions saved my life.

Let me back up a bit: this has been quite the year. In addition to current homelessness and health debacles, I’ve been to the mental hospital twice. My mother died from suicide 20 years ago, and I have clinical depression — something I’ve described as “suicide thought storms.” It’s something that I shamefully managed on my own with meditation and cannabis for over a decade, but couldn’t handle alone any longer once my body became excruciatingly painful due to fibromyalgia and severe B12 deficiency, which nearly killed me in 2015. (Because it can do that.) 

In the spring of 2017, about a year ago, I had to check myself into a hospital for several days because I feared that I wouldn’t survive the night. I had just gotten a denial of Disability payments, a hope I’d been clinging to far too tight, and felt utterly without hope. And it happened all over again last fall, hopelessness to the point of very literally wanting to give up. I moved to California between the two incidents (for my health) and was staying with a friend from college. Two days before the second time, I had gathered that they were going to kick me out — and I didn’t know anyone for hundreds of miles. 

I was going to be homeless. 

The thought was too much; it had been so hard for so long. I just couldn’t do it. I decided to kill myself. I rather peacefully accepted that I couldn’t take it any longer. That it was finally time to end all the pain and struggle once and for all. 

I was going to take all of my Amitriptyline pills and never wake up.

But for some reason, I gave myself a tarot reading before taking them. I’ve been doing my readings for about four years now, ever since a professional blew my mind with her accuracy and helpful wisdom. They’ve helped guide me through the hardest times of my life, keeping me hopeful before my diagnoses — during all of the terrifying cancer tests, all of the painful waiting. And then through two years of near-complete isolation when I was too ill to leave my studio apartment without help. Being able to connect to my inner wisdom in such a clarifying way gave direction to my intuitive feelings, enabling me to use them, rather than just ‘having feelings’ about potentials.

Once again, they came to my aid again last November. I laid out a Celtic Cross and for the “What lies above” card, the best possible outcome for my lethal plans — where I expected to see the “Death” card — was the four of swords reversed. 

The four of swords is a resting man that appears dead. When a card is reversed, it refers to the negative aspects of the card. A common interpretation for this one: a coma. The other cards also laid out the situation with great accuracy and told me nothing of mortality or endings, but instead to work harder and be more realistic. That might sound like a downer of a read, but I found it to be empowering — if something is my fault then I have the power to fix it! This positive thought flew through my mind, then was quickly drowned in the river of mental despair.

But it was enough. 

The flash of hope spurred indecision about my fatal plan, getting me to Google to see if I actually had enough pills to do the job; and it turned out that I didn’t. I just would have wound up with severe brain damage or…in a coma. Without a gun, which I feel like I should be legally prohibited from purchasing, I didn’t have any way to do it with a guarantee. I fell asleep, eventually, desperately trying to think of other ways I could successfully do it in the morning. But when I awoke the depression had lifted to survivable, thank god.

About 36 very rough hours later I again checked myself into a mental ward for my own safety, homeless, but not without hope.

My Chronic Illness Left Me Broke And Homeless, So Meditation Is My Medication

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Meg Hartley for Ravishly
03.16.18

(Photo courtesy of the author.)
(Photo courtesy of the author.)

I’m currently homeless and have been for a month now. My body stopped working right a few years back due to fibromyalgia and injury from severe B12 deficiency (cause that’s a thing), and long story short — maintaining a job when you’re calling in sick all the time is very hard, impossible even, and getting on disability usually takes years, if it happens at all. It’s real sticky-wicked to have your body become unpredictable and tortuously painful. And the financial mess that comes with it creates one hell of a situation. 

So here I am. Homeless.

I often wake up with the sun as it pours its first light into the backseat of my 1993 Toyota Camry. On these days, like today, and the three before, it takes a very long time to actually get up. My body feels like it weighs hundreds of pounds, each bone crushing the one under it as I slowly unfold myself from the fetal position. I go in and out of consciousness as I try to get up, too awake to really sleep, but too sleepy to really wake.

Eventually, I gather myself into a sitting position and reach into my bag of clothes that live in the passenger seat. Even though the windows are usually too foggy for anyone to see me, getting my pajama shirt off and my sports bra (can’t handle underwire with my new bod) on stresses me out every single time. 

Once I’m dressed and have wrangled my hair into a top knot, I pull my tarot cards for the day and do a short meditation on them. Today was The Magician in reverse, reminding me to focus my energies on the things that I want to bring into my life, like a book deal; and not the things I don’t want, like ill health and no place to live. The second card was The Star, directing me to stay hopeful. 

The first order of daily business is to empty my bladder and charge up my devices: my phone, my tablet, and my vaporizer — which I use for medical cannabis. Whether in a library or a coffee shop, the latter makes me nervous every day, just as much as potentially flashing a passer-by. I’ve yet to have a single person visibly notice, and if someone were to recognize my lil’ PAX vaporizer, it’s probably just because they use one, but it’s nervous-making nonetheless.

I get as much as I can get done in these first few hours while charging my devices. 

My nervous system pain is reset by sleep, with morning being as good as I’m going to feel, and the pain getting worse as the day goes on. This really sucks on days like today, where it starts out so horrible. Bonkers days like this are for finding home/job leads and for creative work, the kind of work that gets me closer to a book deal. The days where my head’s on a bit tighter are for any freelance client work I’ve got, errands, applying for jobs I have no idea if my bod will let me perform, and other reaching-out oriented fuck-up-able items.

When my pain levels get to near-crying, I pack it up and head back to the little neighborhood that I’ve declared as “home.” It’s a residential area with a busy street going through the middle, lined with all kinds of various businesses. This means that there are all kinds of random cars parking in this area, so it’s not the kind of neighborhood where a newcomer would be noticed. It’s also well-lit and seems very safe.

My view.

I try to get there before people start getting home from work. My car is very loud and my out of state plates further make us stick out, so I like to sneak in early before everyone’s out walking their dogs and chatting with the neighbors. I hop into the backseat and lie down, covering myself with one blanket and plopping the other, more fluffy blanket, on my middle — hiding my face from anyone walking by, aided by a little sun-blocker shade on the sidewalk-facing back window. I also have a larger shade covering the windshield — the store only had a conspicuous zebra-print one, so I make sure to put it snazzy-side in.

Most days I just lie in my backseat for hours and hours at a time, just as I did back when I had a bed — too overwhelmed with pain and other symptoms to do anything else. 

I feel lucky that I have such a rich internal world. Though I still battle clinical depression and other more typically unpleasant thought patterns, for years before this health debacle stole my external life, I worked with mindfulness and meditation to create a sanctuary-like headspace. My mind is now much like an amusement park: there are definitely some funhouse mirrors up in there, and a quite-terrifying horror house in the back, but the bulk of it is quite amusing indeed.

Once the neighborhood settles down for the evening, usually after several hours, it’s dinner time. I have a genetic mutation that requires a special diet: no gluten, no dairy, and as organic as possible. Breakfast consists of a handful of brazil nuts, and my lunch/dinner is jerky and snacks like snap pea crisps and trail mix. Dark chocolate is always involved, often eaten in conjunction with bulk-section gummy bears or bites of an apple. This deliciousness, combined with a couple of episodes of The Good Wife, is often the highlight of my day.

My tablet’s battery usually bunks out before my bodily energy reserves, but sometimes it’s the other way around, either way leaving me with several more hours before I finally pass out despite the pain, with the help of several prescriptions. My second round of just lying there is more meditation-oriented, and I work to focus and calm my mind, sometimes getting lost in beautiful and timeless breaks of stillness; but other times I fail, getting lost in memories and my own stories about them.

Eventually, usually, sleep and I meet.

And then I do it all over again, hoping that today will be the day that I find a way to make an income with my body behaving like this.

Today will be the day that I find a place to live. Today will be the day that I find the action that propels myself and my situation forward. 

*Editor’s Note: We here at Ravishly want to help Meg in anyway we can. If you’d like to help Meg, too, you can tip her via  paypal.me/MindfulnessMeg. 

Being Homeless in Long Beach

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Meg Hartley for Long Beach Post
DEC 15 2017 8:15 PM

I never thought I’d really become homeless. Even in my last months in my apartment, as I was months late on my rent at the time, I still didn’t think I’d end up here, not really. Even after my landlord couldn’t take it anymore and (very politely) evicted me, I was still sure something would happen before it got this bad.

In the fall of 2015, I almost died from B12 deficiency, which is something I had never heard of. It’s often thought of as an old-timey illness that we don’t get anymore, like rickets or scurvy. It used to be a highly prevalent cause of death and paralysis. I have a couple of genetic mutations that make me predisposed to nutritional deficiency, though it probably started as a congenital condition.

B12 is responsible for the health of the brain and nervous system. Since the nervous system is located throughout the body, symptoms can manifest in many ways. Mental illness is one of the frequent manifestations of B12 deficiency. Since my levels got so low at a young(ish) age, it’s probable that my mother was deficient when she had me, passing on the deficiency. She, Linda Darlene, committed suicide in 1997—a lack of B12 likely fueling her bipolar disorder. A vitamin could possibly have saved her, a teeny little vitamin. It’s infuriating.

I was extremely lucky to get a diagnosis, and even though it took 33 years I feel very grateful for it. I had gotten Obamacare and was able to see a naturopath for the first time, who found the deficiency on her first try. At first my symptoms fell away like magic, but after several months of stabbing myself in the legs with hydroxocobalamin, my progress plateaued.

Doctors ruled out all of the other options before a rheumatologist finally diagnosed me with fibromyalgia just last spring. I had started to wrap my mind around the disease, and what I could do about it, when I was evicted.

A few doctors had suggested that I move from Portland, Oregon to a hotter and drier climate. So when a college friend offered to move to Santa Clarita with me I knew I had to take her up on it. During this time, as I focused on doing my physical therapy exercises as much as possible—which wasn’t nearly as much as I wanted—I was very drawn to Long Beach. At first it was probably due to growing up with Sublime, but I’d also do internet searches for things like “hottest beach in California,” or “the cultural Portland of California” and Long Beach would pop up over and over.

While I marvelled at how miraculously my body was reacting to the 100+ degree weather, I also balked at the sameness of the Santa Clarita area. The businesses are mostly corporate, and even the local ones felt generic. The whole place seemed to cherish it’s, to me, blandness, happy not to offend anyone, nor impress them.

I didn’t spend much time thinking about that though, as I had bigger fish to fry: I had upped my exercise time by 2.5 times and was feeling better and better, noting that my recovery time from doing things like grocery shopping was getting shorter and shorter. I still feared overdoing it though, as doing so caused flares which brought such horrific pain that I had to deal with suicidal thoughts as well.

After nine weeks in Santa Clarita, I had overstayed my welcome. This revelation came about quite explosively, ending with a very large man yelling through my door, “Get the fuck out or I’ll fuck your shit up!” I didn’t stay to find out if he meant my stuff, or my person. I left in a very dramatic and clandestine fashion, with as much as I could carry; around dawn, before everyone woke up.

The aforementioned suicidal thoughts had been a frequent threat even without flares, and I was concerned, but figured I’d get my California Obamacare set up and be at a shrink’s office in no time. Unfortunately, I’m still figuring out my coverage, and my suicide risk went from Googling “Will 23 amitriptyline kill me?” to wondering, “What can I drive my car into fast enough to kill me, but hurt no one else?”

I checked myself into the nearest mental ward.

It was my second time in 2017, the first being after I received my second disability denial. I honestly used to judge people on disability, if only subconsciously, assuming that many were scamming the system, that they were lazy. I feel like we are taught by our society to feel that way. Now that I’m not only familiar with severe and chronic illness, but also the convoluted and infuriatingly slow social security system—my views have completely changed.

Getting on the California State Disability Insurance Program literally takes years, it seems as if the system is meant to discourage people. That they hope we’ll give up or die before receiving it. And if you do eventually get it, it’s barely over $1,000 per month, which doesn’t go a long way in these parts. Or Oregon. Or anywhere else I’ve lived.

In the meantime, five days of group therapy, mild tranquilizers, and lots of sleep at the mental ward helped loads. My aforementioned genetic mutations make it hard for my body to process toxins, so I react to pills, among many other things, differently than most people. Because of this, I can’t remember large portions of my time there (or my mental ward stay in Portland), and the day of my release is fuzzy at best, I have no idea how I got there, but I do know that a kind non-profit offered me a hotel voucher for the evening.

The next morning I could still feel the pharmaceuticals in my body as I headed back to the non-profit, refreshed from a good sleep and hopeful that I could get another voucher. They couldn’t give me another, and my reality hit me very hard as soon as they said no. I got hysterical again, then eventually apologized and left, headed to my 1993 Toyota Camry. And, naturally, she wouldn’t start.

I cried for at least an hour, sitting there outside the non-profit, no doubt making them feel very uncomfortable. Eventually I calmed down and ordered the tow service that my insurance company offers, luckily for free, because I had $1.82 in my bank account. They towed me to a nearby repair company and I called a couple of friends who had reached out. They tried to get me a hotel room but the hotels required the hotel guest to pay.

I was in a CVS when I realized that I was really and truly homeless, that I’d have to sleep in my car that chilly evening. I, yet again, became hysterical. An angel of a man who worked there asked me what was wrong and I tearfully told him, then he offered to buy me a $20 blanket, bringing four over and asking me which one I wanted. That softest of all soft blankets got me through the first night sleeping in my car. That, and, a makeshift pillow made from one of my headrest covers.

Once I had the “pillow” and I lied down I realized I was okay. This wasn’t so bad. I’m pretty short, so only kinda cramped. I even had an episode of The Good Wife downloaded and ready to watch. I felt so silly for making such a big deal out of it, for making all of those people suffer because I was so scared. I told myself I was just “urban car camping,” and slept surprisingly well.

The kind manager of the repair shop got my car running again for free, noting that it was just a “band-aid fix,” and he also gave me permission to park there that night. After I set up an online fundraiser for myself, I headed out to clear my head and make a plan. I wandered about a bit aimlessly, ending up in front of a store called “Buy Buy Baby.”

Something about that sign, or rather everything about it, made every fiber of my being scream, “What the fuck am I doing here?!”

By the time I got back to the repair shop, I had decided that I would leave Santa Clarita; but that I would stay in Los Angeles County, where my body liked it and where my insurance had finally become active. So I did another internet search, “homelessness in Los Angeles county.” And the first article that came up heralded Long Beach as the only city to lower their number of homelessness when it had gone up everywhere else. A little more research, and Long Beach it was.

Meanwhile, for the fourth time since the health crisis, my online fundraiser had already raised over $1,000. My friends are so amazing, as is the community in my hometown of Juneau, Alaska. I’m so bonkers grateful, there is no way that I would have survived all of this without them. No. Way.

So I headed out, no longer flat broke, on my way to Long Beach. It was a Friday night when I got here, and as I searched for parking downtown I wondered if I had made a horrible mistake. It felt dodgy even though I couldn’t place why. (An Uber driver would later tell me that it did indeed used to be dodgy, but had been cleaned up over the last decade. He said that’s what I was probably feeling, assuming that I held intuition as something real, which I very much do.)

I awoke the next morning after not sleeping much at all, as every little noise seemed like it was danger, even though it kept proving to just be drunken people feeling jubilant. Everything hurt as I woke and I felt dismayed at the realization that, of course, the homelessness organization I came here for was closed for the weekend. I decided to cheer myself up by checking out Naples, the lovely little Italian-inspired island with canals.

After checking out those little islands, which I highly enjoyed, I took the time to hang out at Mother’s Beach for a while. Afterwards, feeling rejuvenated, I parked my car in the residential area of nearby Belmont Shore and hung out at a coffee shop until it got dark. As I sat there I noted the 24-hour Jack in the Box across the street, for restroom needs, as well as good street lighting. It seemed pretty safe. I decided to give it a shot.

I walked out to my car and got into the front seat. I checked to make sure no one was looking, then I moved, or rather flung myself, into the back seat. It was a Saturday night, so the drunken passers-by were, again, frequent. I froze everytime a group went by, scared they’d…bother me, I guess? Is it illegal to sleep in your car? (Something I’ll Google only once I’m homeless no more.) Only one fellow noticed me and said something to his friend, who replied, “I’m sure she’s just sleeping it off.”

Monday finally arrived and I called the Multi-Service Center before heading over. The woman asked me where I became homeless, and I told her Portland, Oregon. She told me that they only help those who became homeless in Long Beach and hung up apologetically.

So, unable to go back, I went down there and lied.

After a very frank conversation with my social service helper, I left with a few shelter flyers and the shower times. He didn’t seem particularly hopeful about my finding an affordable apartment, especially since I had no income. But at least there were shelters to call home until I got my life sorted.

I called a women-only shelter and learned that you had to go there in person at 8:00AM to get on the waiting list. I did so, and a couple of very kind and very busy women got me signed up to stay there that night. I relaxed into my seat a little, excited that I could go back to bed. Nope. The shelter was closed until 10:00PM, opening only after mandatory church service and dinner.

But first they needed to have me shower and change into fresh clothes while they washed what I was wearing. They gave me choices for much needed shirts, shoes, and pants that were actually pretty cute. After the best shower ever, I left the building in adorable purple pants, a yellow t-shirt, and gladiator sandals.

After trying, unsuccessfully, to get some sleep in the meantime, I headed back down there at 6:40PM, right before the church service started. What looked like a relatively safe block in the daytime seemed straight-up sketchy at night. I wondered if I, and my car/stuff, were safer at Belmont Shore, but eventually figured that if a car was going to get robbed it probably wasn’t my hoopty from the early 90s.

Besides the smell of beer and cigarettes, I really enjoyed the service. The preacher kept interrupting himself with lines like, “Praise Jesus!” and “Halleluyah!” Most of the audience was right there with him, all wrapped up in the sermon, while others nodded off or grumbled. The room was full of people from both the men’s and women’s shelters as well as neighborhood locals.

At one point the preacher said something that particularly moved me and I noted someone nodding in agreement, just like I was, and I felt profoundly connected to them, to the preacher, to the moment. That feeling made it seem like everything was going to be okay, that I’d find my way through this mess. After the sermon, I followed the crowd towards the dining room. I wondered what to do next but heard someone yelling, “Doors of Hope ladies, up here!” I did as directed and was warmly welcomed by the other ladies at the front of the line, smiles on our faces as we eyed the already-plated dinner tables.

The dinner was quite good, as was the conversation, though I mostly listened. Afterwards we, finally, went to the dorm. Around 30 twin-sized beds filled the room, reminding me of orphanage movies from my childhood. The kind women from that morning were organizing everyone’s required showers, but since I’d done that earlier I was free to take my sleeping medicine and lay down in that tiny but glorious bed.

After a great sleep, at 6:00AM the lights went on. It was Thanksgiving day. I felt pretty good, always a nice surprise from a malfunctioning body. I didn’t know how I’d spend that day, how I’d solve my problems, or even if my car would be waiting for me outside—but I felt grateful indeed.

What I Learned in Prison.

Published on by megglesworthLeave a comment

Meg Hartley for Elephant Journal
January 17, 2015

I readjusted in the metal bunk, smashing my funny bone on a locker in the process.

I tried not to cry out, and looked to my pillow for solace, then remembered its extremely used condition. I flopped my head on the cot and remembered the day’s events.

I had spent seven excruciating hours alone in a room with a toilet and a camera, discovering my body’s reaction to prison was not only to develop a fever, but to overcome the hormones of Depo, delivering my first period in years. Eventually a guard came and got me.

He escorted me to a room where my outfit changed from orange to blue, but not without enduring the most demeaning ten minutes of my life. They discovered no drugs in my bumhole and no used sports bra big enough for these ta-tas.

Freshly suited up, they walked me past two port-a-potties to a tent-like structure. I walked in to a few women watching TV. One snarled, “there’s no f*cking room.” An older lady, who happened to be an ex-advertising client, waved the woman off and walked me to my bunk, even showing me how to tie the sheet.

As soon as she went back to her spot in front of the TV I felt the conversation move towards me, but without including me. Do you know that feeling? Suddenly everyone in the tent seemed to be ignoring me, yet talking directly to me.

They talked about the other girls dorm and how mean they were to new inmates, telling awful stories. I was pretending not to listen when a woman yelled directly at me, “Who cares how new people are treated? I hope your four days are f*cking hell, white bitch!”

I told myself to just be cool.

I took my nose out of the book I was pretending to read and said, “I’m sorry, were you f*cking with me and I wasn’t paying attention?”

She let out a little snort, and said, “she’s cool.” Success!!  I turned my attention downward—somehow I had managed to not pee myself. Double success! The conversations went back to normal volume and gratefully had nothing to do with me.

In any group of people there is usually at least one person born feeling like “the leader of the pack.” This tent definitely had one—she was the one who had nearly made me whiz my unflattering pants. When she spoke, which she did, incessantly and abrasively, the majority of the other girls turned and listened as if these words could change their entire life’s trajectory.

When a girl spoke, she’d look back to the leader for approval.

I continued to listen. These ladies were much, much, rougher than me. They yelled and talked about “beating ass”, while punching random things for emphasis.

I like yoga, inspirational anything, and get really upset when I encounter even fictional violence. I felt very out of place and didn’t want to belong, but also wanted to be present in the experience.

You know? If we’re going to be somewhere—be there.

I adjusted in my bunk again, trying to look involved.

After the conversation moved onto Oxy, specifically the intricacies and impossibilities of smoking it from a toaster, I realized I really didn’t have anything to contribute.

I put my face to my elbow and tried to meditate.

A quiet, centered peace was not in the cards for me that evening.

I kept panicking about prison scenes in movies, worries about what everyone in my small hometown was thinking of me being there and serious concern about where that gross pillow had been.

Eventually I dozed off, then awoke to a light on my face.

Seconds later a prison guard was being referred to as “little princess” and his flashlight had gone from counting gals in bunks to the spastic motions of a boy happy to have the girls notice him.

I wondered what this guy’s life was like outside of the prison, since he seemed to really enjoy this obviously degrading attention. “You know you love me” cooed the leader as the guard suddenly remembered what he was doing,”eight, nine, ten.”

I awoke again with the sense that people were talking about me—to me? To me.

It was time for breakfast. It’s mandatory to eat, they let me know. I slipped on my prison-given socks, put my feet into the Ked’s-looking appointed shoes and tied my dirty hair into a knot. We moved out of the tent into slightly fresher air, tinged with the port-a-potty scent.

We were corralled into the next barricaded area where I saw a girl I knew from school.

Still the prettiest. Still the meanest. Owning it. She even still had a gaggle of minions following her around, just like in middle school. I thought about the personalities that thrive behind bars and wondered what other bullies I went to school with were up to.

We got back to the tent after a meal I can’t even describe (“meat” surprise?) that left me both hungry and bloated.

I tried to dive into the novel I was very lucky to get my little hands on, eventually learning to focus on the story amongst the jarring conversation and constant RealTV violence.

I got swept up, it was sweet and sad and I had to fight to keep tears from running down my face. The theme song to a physics-based sitcom I love distracted me with great timing and no one was at the television. I got a lovely-banket-cozied twenty minutes before someone abruptly changed the station in my face to see if a cage fight was on.

I crawled back into my bunk and continued to observe the relationships going on with these women and the outside. There was a lot of crying, and yelling. One woman who spoke of violence even more than the others was on the phone with her girlfriend much of the time. The inmate’s girlfriend had cheated on her and with a man. She screamed about “dirty d*ck” while visibly crying but not audibly.

A woman in her mid-twenties spoke to her boyfriend with tears streaming down her face, holding the phone with a tight desperation. I later found out that she was a heroin addict throughout her teenage years, but had cleaned up several years ago. She recently had an awful miscarriage and failed to report the non-narcotic medication to her parole officer. For that she got seven months in prison.

They talked to each other. About the fights they’ve been in. The drug busts. How they miss drugs. What they’ve done to get drugs. Who they’ve harmed or stolen from. The children they couldn’t care for. The abuse they’d inflicted and endured.

I wondered what could happen if someone were to convince them that they can have a better life. That they deserve better. That being angry at the world only makes it feel like the world is angry at you.

I was also afraid of drawing attention to myself and actually getting my ass kicked or my glasses broken. So, I behaved as a polite peanut gallery—sometimes adding to whatnot and laughing when appropriate, but mainly just pretending to sleep or attempting to meditate.

Three days went by like this, attempting to hide in plain sight.

But it by bit, I got to know the women. By the last night I had let my walls down, as had even the fiercest of the felons. I slowly let my unguarded personality out and the behavior was reciprocated. As we communicated without fear of our differences we bonded over the experience that we were sharing.

Let me tell you, being incarcerated is one hell of an experience to share. Lots of facets in that one.

Angry yelling turned into straight up giggling. About jail, about life, about it all. Giggling with women whom I had deemed terrifying on first impression. That last night I finally felt comfortable enough to tell some random story involving a golf cart, ’shrooms and Vegas.

The especially violent woman turned to me after and said, “Seriously? You’re f*ckin’ funny? You’ve been f*ckin’ funny this whole time and weren’t f*ckin’ talking? Daaaaaamn, dude, not cool!”

I laughed and wondered what the experience would have held had I been truly unafraid the whole time. When my time was up I said, “I’ll miss you guys, surprisingly,” I nearly reached out for hugs—seriously.

As I walked out of the prison I felt incredibly alive, grateful and educated on many levels.

I learned that when I behave with candor it encourages others to do the same, making it a whole lot easier to see each other clearly. I am strong enough to handle pretty dubious situations with relative ease. Releasing judgement of a moment and allowing it to just be can make even a hard time’s passage graceful.

No matter where I am, I have the ability to maintain presence.

To get a top sheet to stay still on a bunk mat—tie the ends.

And, of course, after enjoying hoppy brewed goodness—always call a cab. I stepped into that moment’s particular cab and “It’s All Right Now” played loud on the radio. I sighed to myself and thought, “yes, yes it is.”