A ganja love letter.

An editor had me switch formats so the following poem will not be published anywheres. But, I couldn’t just delete it! It’s a love letter to cannabis, inspired by my transition to needing it medicinally.  I think my fellow herb lovers will get it… So, here:

My dearest ‪Cannabis‬,

I know my love’s grown temperamental since our relationship has taken on this medicinal tone, and I’m so sorry. Now I lean on you like Snoop taught me, and that’s everyday. I’ve started to look to your faults, pointing out where you make me lose track of thoughts—and overlooking how you make my imagination ace, helping to form a thought worth capturing in the first place.

I take you for granted, it’s not enough that you melt the pain in my aching body; I just want you to rid me of more, and I want you to keep it away forever. You distract my mind from pain via whimsical and varied trains of thought, but I get frustrated when the same locomotives hamper my ability to express them.

I love how you give even boring food pizzaz, but bellyache that you’re to blame when I munch too much. You ease my worried mind, you coax anxiety out the door—and yet still, I ask for more.

I judge you by your appearance, and even take a sniff to see if you’re up to par. I reserve photos for when you look your best, sharing only your gorgeous purple tones and crystals; and resort to name-calling when your game is off—I call you schwag that smells of hay, and you don’t deserve that, not even on your worst day.

But, my dear ‪marijuana‬; my pakalolo, my herb, my sensi—the truth is that I love you, that you truly are a kind bud indeed. Since our last vote you’re always there when I need you. (Though, I’ll admit, the price increase totally blew.) Whether we meet via vape pen or pipe, or by rip or a toke, if you grew up indoors or out; you’re always someone on whom I can count.

So I vow to appreciate you, my beloved ganja, to see you for all of your goodness; and there is so much to see—for you even make smelling skunky a good thing! I love you so much, I’d even declare it with a ring.

Everyday,
Meg

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I Am A “Spoonie.” Here’s What I Wish More People Knew About Chronic Illness

MindBodyGreen, November 28, 2016
By Meg Hartley, mbg Contributor

I Am A "Spoonie." Here's What I Wish More People Knew About Chronic Illness
Photo by Stocksy

Are you familiar with the Spoon Theory, or the term “spoonie”? If it sounds a little odd, hear me out.

It began when a young woman named Christine Miserandino explained to a friend what it was like to have lupus. They were chillin’ at a diner when the friend asked what it was like. Christine gathered all of the spoons from their table and a few more from others, then explained that when you have a chronic illness you only get so many “spoons” per day.

Every tiny thing uses up spoons: doing the dishes, showering, having feelings, getting dressed, ever-y-thing. When you use up all of your spoons for the day, you can borrow from tomorrow—but you will PAY, making tomorrow otherwise worthless, and probably the next day, too. (And if you incite a flare, weeks!)

Another factor for many spoonies is being homebound. I was a public-transportation-lovin’ Portlander, walking up my half-mile hill like it was no thang just a year and a half ago—but now that hill might as well be Everest. Other spoonies are homebound due to their conditions alone, lucky to manage even checking the mail.

Being a homebound spoonie isn’t fun. It’s actually super difficult. It also must be hard for our friends and acquaintances to know what it’s like, and hard for them to know how to help or what to do. Here are a few things that I want everyone to know about this sitch:

1. We rest up to see you.

Before I leave the house to the doctor, to see a friend, or anything—I have to lie around for two days to gather my spoons, if you will. I learned this the hard way: by being in public when level “too much to physically function” creeps up. Now I rest up. This is something to be mindful of when making plans with a spoonie.

2. We recover from seeing you.

For two days after I run errands or socialize, I have to recover. I’m currently at a health stage where those things take up all of my spoons, and I have to pay the price for it. (To my homies—it’s totally worth it!)

On the few days a month I’m actually able to leave the house, it’s not uncommon to hear, “But you look and seem great! Are you sure you’re so sick?” It seems innocuous, but most of us spoonies have had to try to convince people that we are physically unwell for years, and a comment like that can really stir up the feels.

3. Getting my diagnosis took years, and I was accused of faking it many times.

It’s hard to express just how difficult that was. When your body isn’t working and no one can tell you why, let alone how to fix it, it’s the most powerless feeling on earth, but then to have to try to prove that you’re suffering—it was profoundly deflating.

I’ve also found that when I act like I’m feeling better than I am I can actually distract myself from the symptoms for a bit and get some shit done. If I have to get through a doctor’s appointment and grocery shopping when it feels impossible, staring at the good stuff and forcing myself to engage in a little chitchat is really helpful. It’s kind of a “fake it till you make it” approach, and I’ve gathered that it’s a common one. But we’re putting on a face to cope—it’s harder than we make it look.

4. It’s a big financial stress.

Figuring out how to make money when you can’t leave the house, or even function much of the time, is incredibly difficult. It’s taken me 11 months, and I still don’t have a consistent income put together. (Thinking about how chronically ill parents possibly deal with this, man, I can’t even…)

It’s been a whole lot of hustling for gigs that can be done at any hour from anyplace (whenever my body allows, and from home), and those are really coveted freakin’ gigs because who doesn’t want that kind of vocational freedom? If you know someone in a situation like this, money is likely to be an issue in their lives, especially if they’re just learning how to cope and in a world of medical obligations.

My friends, family, and the badass community that I grew up in gathered together this winter and raised enough money to get me through the scariest part of my life. I can’t even begin to express how much gratitude I have to everyone who’s helped me this year, I look forward to finding actions, because words just won’t suffice.

5. If we ask for help—we’re desperate.

Obviously everyone’s different, and some people have no trouble asking for help and/or have a badass support network that doesn’t require them to. Others struggle with feeling worthlessly small when they have to ask for help, and they only have a few close friends in their new-ish city…. (Hey yo.)

I’ve gotten the impression that sometimes people feel like they want to do a good thing and so they offer to help or say yes when asked, but they don’t fully consider whether they really want or are able to, and so wind up bailing.

It’s a really lovely intention, but the thing is when people offer to help and then bail at the last minute—we’re screwed. Like as in no food, or no medicine, actual, in really real ways. So please don’t offer or say yes to someone in this situation unless you can definitely follow through.

6. Offering help is amazeballs.

When people let me forgo the asking for help part by asking what they can do to help—man oh man, is that just spectacular. I could use help pretty much all of the time. I usually just buckle down and figure out a way to do it on my own, which can get dicey. When someone steps in and they’re like, chill, I got this, it’s just the best. My neighbor sometimes calls from the grocery store to see if I need anything while he’s there, and it just makes my day. Small things go a long way in this sitch!

7. We get really enthused about small things.

When I finally get to leave the house I’m like a child, staring at my beloved city with new eyes, pointing out all of the awesome everywhere. I’ve gathered from medical ride providers that I appear a bit silly when I do this, but who cares? The world outside my apartment is currently precious and fleeting, and when I get to play in it—I PLAY in it.

8. But sometimes we need to cry our eyeballs out.

I have a family friend who’s become wonderfully close over the last six months. She’s someone who knows how to hold space, to listen with empathy and without judgment. I know my words won’t escape from her mouth to others’ ears. Being able to call her and let those feels out has truly been a lifesaver.

Samesies for others who’ve seen me at my absolute worst, my most desperate, and yet still come ’round all full of acceptance and kind words. They make me feel safe. Like I’ll make it. It’s so precious. When human contact is rare, the desire to try to make it a wholly positive experience can be overwhelming, so providing a spoonie with a safe space to release the bad feels is an ENORMOUS help.

9. A text message is not a phone call.

This winter I went over two months without hearing the voice of a beloved human. I’d call people, but they’d text back. I used to be the same way—I totally get it—so I didn’t want to pester anyone, but it was desperately lonely. (Yet my Facebook was blowing up! It’s a strange world we’ve made ourselves here.)

10. But a text message is better than nothing.

So many people from all over have been checking in on me throughout this journey, and it’s meant the world. I remember how crazy life is out there, and it’s heartwarming to know I’m thought of and that they took the time to express it.

11. Because sometimes it feels like we could just disappear.

When you’re alone so often, and especially during stretches like in No. 6, it feels like you’ve already vanished—and the world’s just fine without you. It can feel like you don’t matter. I’ve learned to create some semblance of community, and that’s helped lots, but those feels still haven’t quite gone away.

So love on your spoonies, people. This is hard. It’s harder than we make it look, and we’ll probably never actually divulge just how hard it is. (Health issues are often embarrassing.) Before all of this, I remember sometimes whining about not having something I wanted, then rolling my eyes and sarcastically saying, “At least I have my health”—like it didn’t even count.

Never. Again.

What I learned after 10 months of being sick and stuck in my apartment

SheKnows, AUGUST 4, 2016 AT 8:00AM AM EDT
by MEG HARTLEY

What I learned after 10 months of being sick and stuck in my apartment
Unsplash

What’s the longest you’ve ever been alone? Last fall, I was diagnosed with an illness that had progressed to the point of absolute debilitation, and I’ve been homebound for the last 10 months. As a result, the longest I’ve been totally alone is around five weeks straight, with about seven brief interruptions by grocery delivery drivers — who’d wind up inching back from me as I babbled away about anything, anything at all.

I’m recovering from severe B12 deficiency, which destroys the protective myelin sheath around my nerves, brain, and spinal cord. This process causes damage all over the body, but the most pertinent symptom here is trouble walking. On bad-ish days, I walk like a pregnant robot, my movements stiff and my legs bowed out.

I live alone at the bottom of a condo complex that slopes down into a gorgeous tree-covered canyon. Peaceful? Oh my goodness, so yes. But also completely inescapable since I can’t drive. The renowned transit was a big reason I moved to Portland, but my bus stop lies at the top of that big ole hill. It might as well be Everest.

More: How a vitamin deficiency nearly paralyzed me

My close local friends are mighty in quality, but very few in quantity — and they have busy lives of their own. I was also in so much pain this winter that I usually didn’t want to see anyone. It just hurt too bad, and I just didn’t have the energy.

Things have been improving lately. I’ve been “able to people” about 15 percent of the time. (Woo!) But since that hill became my peaceful prison nearly a year ago, I’ve been alone more like 95 percent of the time.

It was really difficult. There’s no need to tiptoe around that. Some days I felt abandoned, and rational or not, it felt like I had no one at all — like I had disappeared and the world was just fine and dandy without me. (I’ve definitely decided to put down some real roots when I get out of here.) It was one of the darkest times of my life, and on some days, I honestly didn’t know if I’d get out the other side.

But as I get further away from the dark times, it’s becoming clear that this experience has actually been wildly beneficial. Facing darkness brings truth, and has helped me to see more clearly. I was able to really think about what I want from life and relationships. I made some really solid goals, and I was able to gain a healthier perspective on my past. (Plus, I finally got to grow my eyebrows out to find my “natural arch” sans anyone seeing the furry stage, huzzah.)

Another fun result of all this alone time is a definite increase in silliness. I’m singing at the top of my lungs, I’m talking to myself, giving self-fives (which I realize I stole from Liz Lemon), I’m writing without censor, I’m tanning in my underwear — I’ve actually had some really good days!

But the biggest aspect of it all has been reflection. I’m a spiritual person, a meditator, a writer. I like to reflect. You could even call it a hobby, but this was fucking intense. During the worst times, I was lucky to sit upright for an hour. Sound often irritated me intensely, and I was in too much pain and too weak to even hold up a book. Very literally all I could do was think. (And I took up bird-watching. I’m going to keep it.)

At some point in all the reflection, I realized that I’ve often bounced off of everyone in my life instead of moving from my own center. Other people’s reactions, and more specifically, my fear of them, had taken over my interactions, creating a distance between me and everyone in my life. I saw how this affected my relationships, and I wondered if others struggled with their own version of a similar problem. I mused on the façades we all wear.

Then I wrote a book about it. And I even found an agent, a good one. We’ll see what happens with it all, but I’ve never felt closer to having a work life that satisfies me. My relationships have become much more authentic (for better or worse), and I feel more connected to myself than I ever have.

I don’t recommend that anyone spend 10 months alone in their apartment by choice. It’s not as spectacular as that — but it’s really made me see the value in developing comfort with being alone. I feel like I’m gonna be a force when I finally bust out of here, and it’s exciting indeed.