All my friends do drugs. Let's talk about this. I'll start.
I was diagnosed with a mild form of epilepsy sometime in 2018? 2019? It’s a bit of a blur. Had I not had a proclivity to drinking and indulging in recreational drugs I likely would not have ever found out. Which begs the question – If a tree falls in the forest and no one is around to hear it, does it actually fall? If you have no symptoms, do you have a condition? The question is as pompous as it is pointless, honestly. And not the point of this essay anyways. But it does set the tone for my frustration. Perhaps there are others that have an undiagnosed condition, living in ignorant bliss as they have not had the lucky fortune of bad decisions to push their bodies to its limits; the consequences of their hidden abnormality pulled to the surface. Regardless of my philosophies on all this, it really does not matter, does it? I happened to be there when the tree fell and of course I heard it, it hit me and landed me in the hospital more than once.
My first seizure was in 2015, my next was 2016 and my third stint was a marathon of three in one day in 2017. After that last misadventure it took me almost a week to get all my short-term memory back. I knew who I was, who the important people and what their names were. But I drive the same route from our house to work and to town, 16 km's round trip, at least twice every day. I had done it hundreds of times. I could picture our cabin, warm and a bit dusty, I could visualize the outside of the large building that houses my partner and I’s shared work, but the pathway in between was gone. It's the epileptic version of walking into a room and forgetting what you came in for; or having that word on the tip of your tongue. You know it's just outside, just beside you, dangling off of you even, swinging off a string, just not graspable. It is strange that something you felt once belonged to you, even something as trivial as my boring and repetitious drive to work, could be stolen.
My mind map of the entire town, to friend’s houses, places that I frequented often, were like that. It was like my story was written up on a chalkboard, and with a dusty brush someone wiped out every other word, sometimes taking out letters in the words that remained. It was obvious what was missing but difficult to fill back in.
"I know I should know the route home, but I just can't picture it right now, I don't know how to get home,” I said to my twin sister and future husband as they sat on my hospital bedside, two sets of gentle eyes peering back. I am so tired. I may feel it, but they know it. Despite how defeated and lost I was coming to under those beaming fluorescent hospital lights, can’t be anything to how useless one may feel watching someone else have a seizure.
I had been sent for tests in 2015, heard nothing back and took no news as good news. I remained more responsible, but still not responsible enough, clearly, up until 2017. Then they sent me for more tests. They sent me to a neurologist. I now have a neurologist. I didn’t tell many people. I wanted to know before I received unwanted attention. Useless worry and mercy. My ego did not want myself to be notable for something I saw as a reflection of my weaknesses. We are so much more than our worst qualities. It's too bad the worst is always the most memorable.
I got tested. Then I got tested again. Medication. Tested. No medication. Tested. New medication. Tested.
And the guilt. So guilty, for being potentially physically weak as well as mentally. I had always been strong and healthy. I always had few consequences. I thought it was a lesson, as easy as, ah ok, well simple, maybe I shouldn’t stay up all night drinking a plethora of whatever is found in the house, whatever is found or offered. That with a party pack of drugs that any user should be naive to not think that at the best is mixed with baby laxative and at the worst, meth and fentanyl. The solution seemed obvious, I was ready to move on and forward, and the first step to me, was to be brutally honest with my doctors.
They left me disappointed.
My straightforwardness was not matched. They were unobtrusive, safe, and passive in their conversations with me. I felt like they were being guarded against creating discomfort. Their own awkwardness and assumption of myself being defensive, that they knew would easily be veiled as gentleness and a willingness to be non-judgmental. I have wondered how they would have treated me if I was younger, dumber, a person of colour, trans, anything other than I. I will always be a little jagged around the edges, but I must admit I made sure to put on my plain, basic and clean shirt and my boring, unstained jeans for my appointments. It is not very difficult to make my caucasian, blonde hair, blue eyed, 28-year-old self look even more stereotypically trustworthy and forgivable than I already do. No one knows I am from mixed indigenous descent. You know that cringey feeling of self-awareness when you hear your own voice on a recording? I always sound much cuter than I feel in my own head.
Their unwillingness to fully commit to my honesty left me feeling like they actually didn't know how to fully help me. I felt a little sorry for them for the missed opportunity, to be honest. I'm a humorous delight, and possibly a pretty good case study. Put me in those textbooks as a lesson in science and interpersonal relationships for future health and medical leaders. I always wanted to be paid for an identical twin study, I'll take being seizure girl too.
After every follow up appointment with my neurologist, sometimes months apart, sometimes just weeks.
"So, no seizures?"
..... Well, no but I haven't been fucking with substances.... is something I do not ever really get a chance to say. Maybe it is just me, I feel like I might disappoint them. I wish I could be crass.
They ask the question as if seizures are a possibility in my everyday life, rather than in a tweaked, cooked and intoxicated, state. Perhaps they are really just doing their job, they don't understand my seizures totally yet either, but it seems like they are not brave enough to ask the right questions. Just do it. Just ask, "have you done recreational drugs or drunken to excess lately or a combination of such? Have you fucked up, taken it too far, been too reckless since our last appointment Kayla, and be honest.”
C'mon, guys, let's just fucking do this.
This pattern continues. Nearing the end of this almost two year journey, my neurologist basically gaives me the o.k. to live my life. "Your medication is working really well, and you should be fine from now on, maybe if you're ever just really tired, maybe just don't drive." What she could have said is, "If you do ever fuck up, or are really hungover, or are yes just actually sleep deprived - intoxicants or not, most likely nothing will happen, but you probably shouldn't drive or really do much at all". Why can’t they just say that?
Let's not totally bash the doctors, I do have credit to give. Moments of clarity were still forged.
I mean, so what if I just don't abuse drugs and alcohol?
“Yea but all your friends probably did the same and none of them had seizures.”
All my friends do do drugs.
Shit.
My denial has been called out.
Doctors do of course know what they are talking about, despite a sometimes lacking delivery. I was so focused on trying to not be shameful, to try to move on from feeling sorry for myself, as I knew it would do me no favours, my attempt to regain some of my credibility and take responsibly for myself, that I didn't realize I was avoiding something more. There might be something wrong with me that I have no choice in. Something that I cannot change nor make amends for.
Even though my ignorance of invincibility had been shattered, it had not for most of those around me. And might not ever. All my friends do drugs. But they don't have epilepsy.
Recreationally, habitually, addictively and abusively are all words as theories that drown into one another when it comes to “recreational” drug use. Partying. I am coming to an age where naturally as people grow out of their 20’s they are realizing this. And some change their habits. Not all though. And at my time of fun doctor visits, just a couple years ago, almost no one around me was quite shifted, grown.
For my last test I was on the medication that I perhaps will be on for the rest of my life. I stayed up for 22 hours straight for a sleep deprived EEG. I had finished an overnight shift at work while I was part-time living in Vancouver. My walk to St. Paul’s was marred with blur, putting all my focus towards each weighted footstep. Turns out staying up all night to see the sun rise feels wrong even without cocaine. But this time I am exhausted. I thought I was about to hallucinate. I do not do well without sleep.
EEG. The one where they put all those wires with sensors on your scalp to watch and record your brain activity. They draw the points of attachment onto your scalp with a red crayon like substance. They then add a Vaseline sort of sticky like substance to the electrodes and string your head up with this node net of a contraption. I'm not sure how the technician so effortlessly and accurately attached it to me, plenty of strings and plenty of hair. Then they put you in a dark room and make you do some brain activities. The technician is in the dark with you too. An observer in the dark. It's weird. They shine some lights, on the left, on the right, left, left, right, right, centre, BIG flash. Flash flash flash FLASH FLASH. They strategically throw some sound at, in and around that brain. Some pleasant, most intense. Beep. Beep. BEPPPP, BEEPPPPP. BEEEPPPPPP. BEP.BEP.BEP.BEP.BEP.BEP. They are trying to stress out your brain, after all. It goes on for a very long half hour.
A few weeks later, the results come. The EEG before the last, was without medication. “hmmm there is a slight irregularity here...” my neurologist says, sitting in the appointment room that I was starting to get familiar with.
I am irregular? Something is slightly irregular. Great. I did not feel too stressed during that test. Annoyed, sure. Wanting to escape the incessant noises, sure. Do other brains feel differently? Do they experience annoying tweaks and beeps and lights, less so than I? I won't ever know.
But the next time, after what for now has been my final test, occurring while on medication, my neurologist, all smiles, with a somewhat genuine but still rehearsed chirp to her voice, “Great so your scan came back normal. Which means the medication works.”
She had a sense of accomplishment to her stride as she walked through the small appointment room that I was now very familiar with. They really should put more fun things in there to read. Doctors are always running behind. Her comment had a sense of briskness to it that I was not expecting. Most of all, it felt shallow and incomplete. Her enthusiasm was not contagious. I don't know what I expected. I guess I hadn't thought this far. My flat reaction caught her off guard, now neither of us knew how to feel. This might be the first time she was able to see how I actually felt. She wasn't crushed yet as I wasn't visibly unhappy, just not visibly relieved. Apparently, I am not always as honest with my doctors as I have preached. But as I couldn't decipher yet how I was feeling, I at least wasn't going to argue with her satisfaction.
"Ok, good. Awesome." I said.
That was it.
Problem solved. Problem explained. Success.
The path to drinking less habitually, to cutting drugs out entirely has been challenging, is still incomplete and might never be to the satisfaction of my doctors.
And although they don’t mean to, I am fairly unsupported by family and friends around me. In the oh I want to support you but also I don’t want you to judge me, kind of way. Most of them anyways. Unintentionally. But all my friends do drugs. In order to let them maintain support means I simply cannot hang out with them past 9pm. I have to give myself boundaries whether or not I explain that to my social circle. Besides, they shouldn't have to police their behaviour just because I can't behave the same way.
It doesn't change the fact that all my friends should do less, or no drugs. Maybe take more than a three day break from drinking. I can't tell them that though. Being forced to shift, rather than completely out of free will, means that I have little credit in their eyes. I’m also a reminder of what they are trying not to think about.
But the worst is when I am given no credit at all. “Well yea you are saying no because you can’t.” Mostly just one person goes that far with me.
And they are wildly incorrect. I always can. I am always capable. There is no such thing as can't. Also, fuck off.
It is a projection. They don’t want to admit that it is hard for them to say no. They frame it that way because it means to them that if their life was on the line, they could say no too. And it’s a lie. And it discredits how hard it has been for me and the work that I’ve put in.
Not everyone is like this. Some are proud I can tell. Those are the ones that recognize it would be hard for them too. Those that won't recognize my changes as difficult, are also the ones that don't want to admit that they might have a problem too. Because if it's hard for them to cut it out it means that they aren't actually in control. I'm not yet. You might not be either.
It's lonely here. There's not a lot of safe and free and open conversation going on around me. So, I hope this essay makes you uncomfortable. I don't have many to talk to and my friends certainly don't want to hear what I have to say. It’s almost like the neurologists office all over again, both sides speaking safely, guarded conversations veiled as non-judgment. Sometimes it feels like I'm getting punished.
"You think you're so much better than everyone else because you can't do drugs."
Once again. I always can.
Maybe you're the one that cannot.
All my friends do drugs.
Kayla