CBDon’t

Let’s talk about drugs, baby
Let’s talk about THC
Let’s talk about all the good thing and the bad
About C-B-D!

About five years ago, I documented my experience and thoughts about marijuana. They were… Not exactly complementary. More a diatribe, if I’m being honest.

My conclusion then, and remains today, that I fully support the use of cannabis for whatever purposes the user deems fit, and I fully support it being legal everywhere for all times.

I still don’t like being high, and THC does nothing to alleviate any of my symptoms. There was another experimentation with THC between then and now, and I found an edible that got me high without making me sick, and it just cemented the fact that I really don’t like being high. So I gave up on cannabis entirely for a very long time. It’s done some very amazing things for people I love, and I completely believe it has amazing medical benefit potential and wants more research, for sure. I’ll not disparage its use for anybody else, it’s just not for me.

I really wish it were. I really wish it worked for me.

I’m currently on three different drugs for mental health. Two for depression, one for generalized anxiety. It’s difficult to say if they’re working or not really, because I have legitimate reasons to be depressed and anxious and so it’s hard to tell what’s genuinely a good day and what is the medication making things okay. They’re definitely helping; I have less sad brain days with the meds than without them, for certain. ALS just puts everything on hard mode, and this year has exacerbated all of that beyond belief. Of course I’m depressed and anxious, I have a terminal disease, but I suffered from those brain problems even before I was diagnosed. When those three drugs don’t quite cut it, and some nights they don’t, I have a scrip for Ativan to take the edge off. It definitely helps. It zones me out and usually negates any panic attack I may be having at the moment. Which is nice.

The problem is I don’t always want to zone out. If I’m having a full-blown panic attack, then certainly, yes, please God, zone me out, make it go away and let me breathe. Quickly. But in general, my level of anxiety is far less dramatic than the mind racing, can’t breathe, holy shit I think I’m actually going to die RIGHT NOW panic attacks. An ongoing low level panic attack perhaps, a buzzing in the back of my brain, 1,000,001 things clamoring for my attention and every single one of them stressful and sad.

There’s just so much to think about, things to do, things to plan for, everything coming at me at all times from all sides. It’s really easy to get overwhelmed. The tiniest little side thought can lead to a spiral of panic and fear. A television show that shows someone in a hospital, connected to machinery and unresponsive? My brain automatically thinks “that’s going to be me someday, and how I do not want that life for myself”. WHEE DOOM!! Wondering if my loved ones will have the strength to let me go when it comes to that. A character finding it hard to find the right words to say will lead me down the road of thinking about how I’m not going to be able to speak at all someday. Usually I can fight the downward spiral, but not always. Some days I lose.

I have so much to do. I have so many plans to make, things to document, wishes to make known and official, legal obligations to fulfill before I die. There is never a moment in which I could not be doing something to help my loved ones through my death. Items to be sorted. Organization to be done. If I don’t actively fight it, I fall into an anxious despair just thinking about everything that I have to do and being so overwhelmed I end up doing none of it and feeling trapped and never feeling like I can just… take a breath. I sit here and do nothing all day, knowing full well that my time is short. The weight of those obligations makes it impossible for me to relax sometimes and the crushing anxiety of all of these responsibilities stifles me constantly and I spiral.

Some days I just want to not think so hard. Turn my brain down a little, not off. Sometimes I just want to breathe a little bit. Not necessarily forget everything, but just an emotional step back and a breath of fresh air. Get a little space between me and my anxiety so it doesn’t seem so insurmountable.

So what’s a girl to do?

A month or two ago, I was out doing errands – properly social distanced and very careful of course, I’m not a covidiot. My friend and I were both pretty stressed out, in general because… gestures vaguely at everything… and because of the pressure of the errands and danger being out in the world. One of our stops was a store called New Seasons, which is like a small local Whole Foods but it doesn’t suck. While we were there, we noticed they had a special on CBD drinks and we had both been curious about it. Now, I had tried pure CBD before as a tincture and it did nothing for what I was trying to do with the time. It didn’t affect my headaches, my twitching, my panic attacks. But I know a lot of people that swear by CBD, and extol its virtues for everything – particularly stress. It’s becoming much more prevalent and accepted for its benefits. So that being said, and everything being what it is, my friend and I figured what the hell, and bought one each and drank it.

SELTZER WATER AND POT IS NOT A GOOD TASTE BY THE WAY. VERY BAD. EVEN IF YOU SAY IT IS BLACKBERRY FLAVOR IT IS POTBERRY.

And a little while later I felt… Okay. A little more relaxed, maybe. Feeling a little more capable of handling things at the moment. We were able to finish up our errands with a bit more calm.

Relaxed until the aftertaste hit of course. BLEAUGAHAUGHERGH. POT TASTES SO GROSS!!

Pot burps notwithstanding, it was much more in line with what I wanted. Not brain-dead, not staring at the walls, just a little more emotional wiggle room. And I fully concede that it may entirely be a placebo effect. But if it works, then fuck it. Even if I just believe that it works and is doing nothing. GOD BLESS THE PLACEBO EFFECT.

So I guess I’ve made peace with cannabis. I found something that does something. It does not, however, do one major thing that I really wanted it to do – I really wanted something to stop my brain over thinking before I fall asleep. Because THAT’S when the anxiety and depression get me. I stare at the ceiling and my brain spins for over an hour before I’m able to fall asleep finally. I wanted CBD to take the edge off of that and let me just rest, maybe. Nope! Turns out CBD can cause nightmares, apparently? Anecdotally, mind, it’s not been properly studied (get on it, Science!), but it apparently does with me. I already dream weirder than most, my subconscious does NOT need any chemical assistance with coming up with unpleasant situations involving insect faced people in a gorefest speakeasy shootout or menacing floating toasters in my bed about to touch me. So apparently I can’t take it right before bed, which is too bad. I’ll be sticking with Ativan and Ambien for that when things get rough.

But for now, at least I found a little daytime breathing space. Which is amazing in itself.

I will fully accept that minor victory.

Friday Night Panic

(It’s Friday night. J is over, we’re playing Horizon Zero Dawn. It’s late. We’ve been playing for hours and my back is a little cramped from sitting weird on the bed. Things quickly went sideways.)

we need to move

Ok, Body, we’ll shift a bit.

no, like, we need to move right now. right now. move. need.

Move where?

the chair i don’t give a fuck need to move now it’s kinda hard to breathe

Ok, I’ve asked J to let us out. We’ll sit in the wheelchair for a little bit. He’s gotten up to go to the bathroom. Let’s take our time.

HEY WHY CAN’T WE BREATHE RIGHT NOW

We can, Brain, but it’s always a little hard to catch our breath when trying to scoot across the bed. It’s an awesome bed, holy crap so comfortable, but damn is it hard to move around in. We’re just short of breath from trying to haul ourselves to the edge. It’s ok.

it’s absolutely not ok

OK YAH SERIOUSLY? WE CAN’T GET AIR IN. LIKE AT ALL.

I can reach the breath stack exerciser. Let’s use that to get a proper breath and then we’ll move some more.

it’s not working can’t breathe

WHY IS IT NOT WORKING WHAT’S GOING ON WHY CAN’T WE BREATHE HOLY SHIT

Calm. We’re just tired, let’s get to the edge of the bed and sit up straight. Expand the lungs.

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

Ok, how about the AVAPS machine? It’ll help. It’s designed to breathe when we can’t.

IT WON’T POWER ON WHY WON’T IT POWER ON??? HOLY FUCK!! ARE WE GOING TO DIE RIGHT NOW?! WHY WON’T IT POWER ON? WE ARE DYING!!

No, just..

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

J IS GOING TO COME BACK AND FIND US DEAD ON THE FLOOR IF WE DON’T START BREATHING!! RIGHT NOW!!

Maybe we can call him for help.

not enough breath to yell can’t breathe can’t breathe can’t breathe

WE ARE GOING TO DIE RIGHT NOW

Oh god. We really can’t breathe. What do I do?

You Calm Down. You’re Not Dying.

Um…you’re new. Hello? You are?

Hello. I Am Your Higher Brain.

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

YOU KNOW WHAT IF WE DIE RIGHT NOW IT WOULD TOTALLY BE OKAY IF THIS IS WHAT IT’S GOING TO BE LIKE ALL THE TIME BECAUSE WE CAN’T BREATHE

I have a Higher Brain?

Sure. You Know How When You’re In A Crisis, You Get Really Pragmatic And Don’t Panic But Just Do What Needs Doing? That’s Me. I’m The Opposite of Lizard Brain, Your Primal Instincts.

sssssUP, hOW’SSSS iT gOING?

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

HEY WE SHOULD TOTALLY CALL 911 RIGHT NOW. TRY TO STAND UP, GET SOME AIR IN HERE?? WE ARE GOING TO DIE. LITERALLY DIE.

I’m standing but it isn’t helping!

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

Listen. Calm The Fuck Down. If You Can’t Breathe, You’ll Pass Out. That’s Not Dying. You’ll Have More Than Enough Time For An Ambulance To Arrive. This Is OK.

BUT EVEN IF THEY COME IN TIME THIS IS JUST GOING TO HAPPEN AGAIN AND AGAIN. MAYBE WE SHOULD DIE AND BE DONE WITH IT. THIS IS THE WORST THING THAT’S EVER HAPPENED.

J is here, let’s have him call an ambulance. I’m standing here gasping like a fish and I can’t tell him what’s wrong. Oh no, he’s ..kinda panicking.

Then Don’t You Think We Should Stop?

can’t breathe can’t breathe can’t breathe can’t breathe can’t breathe

STOP WHAT? DYING?

Panicking. If We Calm Down, We Will Be Able To Breathe.

Wait, is that what’s going on? …Is that why we can’t breathe?

ALS Isn’t A Switch. It’s Gradual. You Don’t Suddenly Lose Use Of Your Hands, Why Would You Suddenly Stop Being Able To Breathe?

Oh. Ohhhhhhhhhhh. Shit. OK. Yeah. J even just asked us if that’s what this is. That’s exactly what’s happening. This is a panic attack. This is the worst panic attack I’ve ever had in my entire life, but it is just a panic attack.

can’t breathe can’t breathe can’t oh…ok..i think i remember how to. ok. gonna try to pull in breaths nice and slow. ok. i think we are ok.

NOT DYING! WOOOOOO!! HEY, OUR BAG JUST CAME UNDONE AND WE ARE SECONDHAND PEEING ALLLLLLLL OVER THE CARPET!

My Job Is Done. Later, Guys.

Cool, only now what do I do about calming J down and dealing with the pee going everywhere?

Not My Department.

HEY IT PROBABLY CAME UNSCREWED A BIT WHILE WE WERE SCOOCHING ACROSS THE BED, YEAH? THAT WAS LUCKY.

Wait, what?

yeah what, how is this helpful?

WE’RE NOT PANICKING ANYMORE. NOW WE’RE WORRIED ABOUT THIS. THAT WAS A USEFUL DISTRACTION. J’S WORRY AND THIS MINOR CRISIS HELPED PULL US OUT OF THE WORST PANIC ATTACK OF OUR LIVES. OH ANDI GUESS HIGHER BRAIN HELPED A BIT. BUT NOW WE CAN BREATHE. HOLY SHIT THAT WAS SCARY.

You make several fair points.

COURSE. THAT’S WHY I’M THE SMART ONE.

…Whatever You Say.

Not My Husband

We pulled up to the parking lot, slid into the disabled spot, and J activated the ramp. (Common. Rote. Standard.) He unfastened all of the tiedowns connecting my chair to the vehicle, and stepped back so that I could navigate my exit. (As usual. Like always.)

This time however, we had a witness. I mean, we often have a witness – the van makes a lot of noise when it deploys the ramp and the sounds tends to attract gazes. This witness was just vocal. (Uncommon. Nonstandard. Weird.) Our witness that night was parked beside us and made herself known by exclaiming how wonderful the van was and how lucky I was to have it. It was so cool, she said, the way I could just drive my chair right up inside and park up front. I agreed with her, of course; commenting on the marvelous freedom it affords me, and we spoke for a little while about how it was important to me that I was able to ride alongside the driver seat and not have a rear entrance van – making me effectively cargo. We spoke also about the minor problems I have had with said van (this was before the brakes melted), about the lengths I went to in order to purchase it in the first place, but mainly we had a pleasant chat about the marvel of modern engineering that this man was and how much freedom it afforded me. She then turned to J, beaming, “and you’re so lucky to have a good husband to help you.”

…We get that a lot.

I didn’t correct her. We never do.

To be fair, he used to be my husband. Now he’s my best friend. Because of that, there is a very easy intimacy between us, a lack of distance that typically exists even with the closest friendships. He hugs me a lot, we have excellent non-verbal communication between us, and it’s easy for an outsider to mistake our relationship for that of a married couple. We live in a touch-starved society, and here is this guy who can so casually rub my shoulders or hold my hand when I am in an emotional crisis, who is cutting my food for me and escorting me everywhere, so OBVIOUSLY he must be my husband, right?

But yes, I agreed – I am so incredibly lucky to have him.

I am jealous of people who get diagnosed with ALS who have a spouse, if I’m being fair and honest with myself. Although intellectually I understand that no relationship is guaranteed, and sometimes marriages don’t last through a terminal disease, most of them do. Till death did they part. Having someone that intimate with you, that connected with you, and consistently present for you – I am so incredibly jealous of that. You have a built-in partner through all of this bullshit. Not a guaranteed slave at your beck and call or anything, but the security of having someone who will of course be there to fetch you a glass of water when you need it, to help you to the toilet when you’re at that point of helplessness.

((I absolutely know to the core of me that if I had been married when I was diagnosed, I would totally have given my partner the option to walk away forever and pursue a different life without dealing with me dying – even though I know there’s no way they ever would. Probably. I gave all of my friends the same option. Some of them took it, but most of them didn’t. Dealing with a terminal disease sucks for everyone.))

Even though your primary medical caregiver should never be your spouse, there is a lot of automatic care that is assumed with being married to someone with a complicated disease. I don’t have that built-in automatic assurance. I don’t have someone sleeping in the bed beside me who can help me turn over at 3 AM. I don’t have someone sharing the same space as me to whom I can turn for petty little things and I do not mind asking, because they are already around and the thing I need is so minor. Instead, I live with my blind mother who can’t tend to a lot of those stupid little things I’d like done, such as to open the window blinds for me or light a candle or move these five books to a different bookshelf. It’s kind of a major undertaking for her, and impossible for me. I can call her into the room to take a dish away, but I’m lacking someone who would be sitting beside me anyway and would automatically be taking my dish with his or hers. A built-in partner to help me navigate all the fuckery.

What I do have however, is this amazing human being who has stepped up to provide a lot of the day-to-day shit that needs doing, without needing to be asked. When my planned caregiver left me, J stepped in with no complaint and an easy grace. And I am very very lucky in that, since we used to be married, I am very comfortable with him and have a built-in intimacy that I simply don’t have with any of the rest of my friends. I’m not embarrassed at the end of the day when he drops me off at my apartment to ask him to unhook my bra for me before he leaves because it’s very simple for him to do, very very difficult for me to do, and the dude has seen me naked a lot so who even cares. Eventually I won’t have a choice but to develop the same intimacy with us a lot of people, be they friends or paid caregivers. But for now, he is the one I turned to when I woke up in the middle of the night and couldn’t get out of bed to pee fast enough and suddenly needed someone to change my sheets. After I spent the rest of the night sleeping on a towel because it was 4am for fuck’s sake. I was embarrassed to ask, of course; it’s not an easy thing to tell another human being that you, a grown-ass woman, wet the bed last night so thank God for mattress protectors but could you please change my bed for me? But since he is my ex-husband, that intimacy already exists to a certain level (I mean, the man held a bloody barf bag for me after I had post-tonsillectomy nausea soooooooo everything else is easy-peasy after that, surely), and it was very organic for us to slide into this new development together. It is much easier to admit weakness to someone who has lived with you for 10 years and seeing you already go through some serious shit. We survived divorce; dealing with this terminal disease together is practically a piece of cake compared to that.

I am so lucky to have him.

I love him more than… Probably every other human being on this planet if I’m being honest. He is the best one.

As of this last Valentine’s Day, it was 10 years ago we were married. I’ve known him nearly 20. He is my best friend, my primary caregiver, my confidant, my buddy, my chauffeur, my personal assistant, my first and true love. I am a very, very lucky woman to have him in my life, to have been able to maintain this level of friendship even after our romantic relationship fell apart. I personally don’t understand being able to have an intimate relationship with someone for 10 years of your life, and then just walk away from it when that relationship goes wrong and never speak to that person again. It’s unfathomable to me. Literally no one on this planet knows me as well as he does. Not everyone can do that though, let go of the sense of failure and hurt and maintain a positive relationship afterwards. For me though, there was literally no other option. Even though the romance part of it didn’t work out, I love him to the ends of the earth and with every fiber of my being. That love is just different now.

I guess what I’m trying to say is that J is pretty neat. I like him a lot.

I just felt like I should state that for the record.