#some days I wish I had a formal diagnosis for my Weird Brain Stuff so I could explain that

[theres-whump-in-that-nebula]

When a customer jumps to wild conclusions about your motives when you forget to do something you always have trouble remembering to do; because your checkout routine was disrupted and/or ran very, very long; and still makes a fuss over it when you are willing to, and actually do, fix the issue, scolding you for it throughout…

Over (at the absolute highest) five dollars off on a two-hundred dollar purchase. Wow.

I mean, yeah, I fucked up; but it was an honest mistake, I felt gutted bad about it, and ultimately I corrected the error, so I’m good right?

I wish she hadn’t walked out before I could apologize formally though. I don’t like hurting people.

[contiinuation]

I think that on some level my mother always blamed herself for my epilepsy. A lot of her theories were based on the fact that I was born a month too soon via c-section. She cites that the doctor may have pulled me out of her too aggressively or something, or perhaps he grabbed me by the neck the wrong way while I entered the world, kicking and screaming. Shortly after I was born, my lung collapsed. My mom has theorized that perhaps I went too long without oxygen and that’s why I found myself fighting a seizure disorder twelve years later. She blamed vaccinations for a while there. She also blamed braces for shifting my teeth around so drastically that I had developed a seizure disorder.

My mother blamed herself and the things she did for my seizures so naturally, she threw her entire being into fighting them.

My mom is a nurse of thirty years and has seen first hand what drugs (legal and not legal) can do to a person. She’s a pretty hard-headed and thick-skinned woman and I couldn’t do what she does on a daily basis. Growing up, her experience in the medical field seeped into our home life. Our family’s medicine cabinet was twice the size of all of my friends’ medicine cabinets and it was always filled to the brim with vitamins and medical supplies, including latex gloves, medical tape, surgical tools and she sometimes kept syringes locked in the other medicine cabinet in her bathroom. I even saw an IV drip bag up there once. I never thought this was weird but in retrospect maybe the syringes were a little bit questionable. It’s nice to know, though, that if the absolute end of time occurred while I lived with my parents, I would have a generally good chance of surviving and repopulating the earth.

With respects to drugs though, my mom was a firm believer that there’s always something natural out there that can cure minor ailments like headaches and period cramps. She liked the idea of curing things naturally rather than turning to harsh drugs to fix things. Advil and Claritin made very rare appearances in our house. Period cramps were treated with a heating pad and this weird tea she brought home from Russia once (which worked). Muscle pain required magnesium. Have a headache? Take a nap and down a litre of water. Allergies? Nettle tea and Vitamin C. Nauseous? Ginger tea. Cold and flu? My grandma used to make this mixture which was basically a full jar of liquid honey that was packed to the brim with lemon and ginger slices along with fifteen to twenty cloves of garlic. I swear one tablespoon cured you within hours.

My mom applied the same logic to my seizure disorder. Before my doctor could put me on meds (I hadn’t had enough seizures/tests done until six months after the first one for him to make a formal diagnosis allowing him to write the appropriate prescription) my mom tried what felt like every possible natural remedy on the face of the planet.

Remedy #1: Aura Cleansing

When I first got sick, I remember having a lot of appointments in a very short time frame. One of the first ones took place in a little apartment building in North York. I’m pretty sure it was an under-the-table operation because this was literally in this little Eastern European lady’s apartment and she was adamant about it being cash-only. My mom explained this appointment to me as “aura cleansing,” something that would “draw negative energy out of my me”.

The Eastern European lady had a few degrees hanging on the wall of her kitchen stating that she was certified in accounting from a local university and one in Russia. She had another certificate hanging next to the accounting degrees allowing her to practice in the field of Holistic health and healing.

I remember looking around and thinking it was a homey apartment. It vaguely resembled my grandmother’s in Poland: there were doilies on every piece of furniture and it smelled somewhat like boiled potatoes. She also had a beautiful cat, Felix, who was long and slender and spotted like a Jaguar and I loved him.

After asking my mom and I a few questions about my general health the lady lead us into a spare bedroom where she had a bookshelf, a loveseat and a massage table. My mom sat down on the loveseat and the lady turned on a radio that played ocean noises at a soft volume. I took my place on the table and the lady asked me to close my eyes and started talking me through deep-breathing exercises, which lasted an entire half-hour. I started getting restless. She then moved on to asking me to stay completely still while she hovered her hands over my entire body in steady, rhythmic motions. I remember thinking, “if the problem is in my brain, then how the hell is this going to help?”

By the end of the appointment I was primarily fixated on finding Felix again. I was relatively smart for a twelve year old. I knew this “aura cleansing” wasn’t going to help a problem in my brain. My mom paid the lady while I hung out on the floor of her foyer with the cat.

In the car my mom and I talked about how I felt about the appointment. I told her I didn’t like sitting still for so long but I didn’t complain. I knew she was just trying to help. We went back a couple more times but eventually I think my mom clued in that I didn’t like going and didn’t think these “aura cleansing” sessions weren’t helping. I continued having seizures regardless of how much this Russian accountant cleansed my aura. The appointments frequently interfered with my normal kid stuff like Girl Guides and homework and whatnot so we never went back.

Remedy #2: Biofeedback Therapy

Around the same time as the aura cleansing sessions, my mom started taking me to an ADD/Biofeedback clinic close to our house. My parents told me that these sessions would help me control my seizures, like when or if they happen and the severity of them. I didn’t fight it because it sounded fantastic in theory - if I could control them then I could theoretically never have a seizure ever again. These appointments would prove to be equally as useless as the aura cleansing. At the very least, these appointments helped me come to terms with how little control I had over my life anymore.

The first appointment was focused on teaching you proper breathing techniques and how to divert your focus to certain parts of your brain. I’m not sure of the specifics of it but it was a weirdly satisfying experience being able to direct my brain processes and I knew it was working because I could feel it. I could literally feel my brain waves diverting themselves at my control. I’ve retained the ability to do that and sometimes I divert my focus for fun.

This clinic was huge and there were individual rooms where patients would be hooked up to a machine that resembled an EEG machine. With this machine you would basically be controlling a virtual game on a computer screen with your brain waves and breathing pattern. My favourite was the roller coaster game: the roller coaster would speed along the track as long as you kept your focus and breathing rate to a certain standard. With every game you completed successfully in a  given time frame you’d be awarded points and eventually you would be able to exchange your points for prizes. It was like a Chuck-E-Cheese for kids with neurological conditions.

When I collected enough points I traded them in for a $20 gift card to Chapters. The day I won the gift card my mom and dad took me to the bookstore and I bought one of those Guinness Book of World Records books. I came across the book in my parents basement a couple weeks ago and smiled.

I wish Biofeedback Therapy worked for me. The outcome sounds like a dream. Being about to control when and where and if you have seizures sounds like a dream. However, unfortunately, they didn’t work. Seizures kept happening regardless of how hard I tried to redirect my brain waves - and believe me, I tried, but they continued.

Remedy #3: Dairy-Free and Gluten-Free Diet

Right after my diagnosis with Epilepsy my mother did a lot of internet research and came to the conclusion that dairy and gluten would be ultimately detrimental to my health. We went back to the aura-cleansing lady - who happened to also have a vast amount of knowledge about the dietary needs of epileptics - who confirmed that dairy and gluten in any form should be avoided in every way possible.

I’d never been a picky eater so this diet never really phased me in the slightest. It didn’t help with my seizures at all but living without dairy and gluten didn’t bother me. I managed to find substitutes for all of my favourite things, some things I ended up liking more than the original anyway.

This diet lasted two years. No one actually forced me to stick to it for this long; I genuinely liked the foods I was eating for those two years and I felt generally more physically healthy, but I started to miss the fun foods that I could technically no longer eat. The fact that I was getting older also didn’t help. I was going out with friends more often and we’d usually eat out or order in, and take-out dairy-free, gluten-free food wasn’t typically available anywhere at that point in time.

One night in 2011 I found myself at Laura’s house. Her mom made a Baked Alaska for her birthday. I wasn’t going to say no to a slice of birthday cake for my best friend’s birthday, so I took a big slice thinking nothing of the potential consequences of eating dairy for the first time in two years.

That night, Laura’s toilet and I spent a long night together. I’ll spare you the gruesome details. I will never put any blame on my mother for my epilepsy, however, I will credit her for the role that she played in my lactose intolerance. Remedy #4: Holistic Electro-Treatment

I’ve scoured the web and I don’t even know what to call this treatment because I can’t find any evidence of it existing, but I know it exists because it’s yet another thing my mom thought would cure me of epilepsy. So I will call it Holistic Electro-Treatment.

I started suffering from hay fever and migraines the spring before I turned seventeen. At this point I was taking medication for my seizures and had been seizure-free for almost three years. I didn’t like mixing drugs so I generally avoided taking antihistamines and pain relievers and I was open to any forms of treatment that would make the itching inside my face go away.

My mom had a friend at work who suggested this treatment that consisted of strategically placed electric currents running through your body that would treat allergies and epilepsy and various other ailments, including my newfound lactose intolerance. This treatment also sounded incredible because it was kind of an all-in-one type deal, but it didn’t work.

My first appointment was with this lady in the basement of an office complex. My mom came with me and sat as I sat on a table and the therapist-lady showed me the pen-shaped device that would omit the slightest current of electricity. She ran through a series of basic questions about my medical history, and then asked if I had any body piercings, as the metal could interfere with the electric currents.

My mom was old-fashioned, and that's why I hadn’t told her about the time I got my navel pierced. She was so incredibly against any body modifications. When I was fifteen I dragged Genn to some sketchy basement apartment where a little non-English speaking woman did tattoos and piercings. I was on a mission to get my nose pierced. Now, the legal age to get such a piercing without parental permission was sixteen, so I was under age, but I was referred there by an acquaintance from school who said that this place doesn’t ID kids who come through there. I was nervous as I was filling out the form with a fake name and age, but I was determined. She pulled a tiny needle out of a sterile package and  pushed it through my nose, and with that I had my first facial piercing. I showed up back at home around 7pm that night and did everything I could to avoid my parents, but they had to see me eventually, right? I eventually ventured upstairs, holding my head down until they eventually noticed the sparkly rhinestone stud sticking out of my face. They were - within their rights - pissed about it. To my surprise, my dad was more pissed than my mom, who later approached me and told me she liked the facial piercing, saying that it was “cute”. My dad hated it and I think he was more pissed that I went out of my way to go somewhere that was probably unsafe to get a foreign lady who ran an illegal operation in her basement to “hole punch my face”, as he so lovingly put it. Not even twenty four hours later he paid me double the cost of the piercing itself to take it out (I was a relentlessly stubborn kid), followed by him driving me to our local LifeLabs to get my blood and urine tested for diseases. Everything came back negative, for the record.

My next piercing after that was a navel piercing that I had done (when I was legal to) at a local tattoo/piercing shop. That was easier to hide, so when my mom took me to this electro-therapy session and the therapist asked me about any piercings I was nervous. I told her no, thinking “why the hell would this woman want to see my belly button,” when she pulled out the electric-pen-type device and tried to start the session. It turns out that (and I could be wrong because I don’t know the specifics of the treatment), when you stimulate certain points on the body with slight electric currents you can normalize the functions that those nerve endings control and the belly button is one of those points that would help with either my allergies, seizures or lactose intolerance. Before she could even touch me with her electric pen, I told her I had to pee and I went to the bathroom to take out the belly ring.  I hoped to God that the appointment would be short enough for me to shove it back in without it closing over or scabbing up. I went back to the table and laid down so the therapist could work her magic with her electric pen. She eventually got to my belly button and saw the very obvious hole in my abdomen and asked me about it. My heart was pounding because I didn’t want my mother hearing about this but I think she was on her phone and fortunately didn’t hear. I told the therapist I had the piercing done recently but took it out soon after. She shrugged it off and continued working. When it was over I went to the bathroom again to put it back in. It slid in without a problem and I left her office after a consultation about my dietary habits and little changes I could make to help with hay fever.

I went back several times because I noticed that the hay fever slowly went away and my digestive system could tolerate moderate amounts of lactose again, which I was happy about. I was able to rediscover my love for half and half in coffee and cheese on sandwiches. I eventually stopped going around August because it got expensive and it got hard to make appointments that I could keep. I was a busy sixteen year old, I guess.

My digestive system’s aversion to lactose eventually came back and I found that my hay fever also came back the following September when the ragweed came out. I can’t say with any level of certainty that it helped with my seizures because I hadn’t had any when this treatment started but I had a couple in January following the treatment’s end in August.

Remedy #5 Ancient Chinese Medicine

In 2009, my parents took me to see a Traditional Chinese Herbalist. I was probably thirteen at the time and we packed up the car and drove up town to North York. I was mad that I was missing the first half of a get-together Genn was hosting for what would turn out to be another disappointing attempt to stop my seizures. I wasn’t on my meds at this point so my mom was adamant that we give this doctor a shot.

I don’t remember much about the appointment itself except for the doctor asking us about my medical history and concluding that I was to be given a potent concoction of various herbs once a week, many of which looked like bark pulled fresh from a tree. The doctor gave us five individually packaged baggies of dried herbs and plants and whatnot and explained to my mom that each package was to be put into a big pot and covered with six cups of boiling water and simmered until only one cup of liquid remained.

I was to drink this potion once a week. So every Saturday morning for five weeks straight I awoke to the smell of what can only be described as the damp remnants of a cedar tree forest fire, charcoal, gasoline and sadness.

Now, like I mentioned before, I’m not a picky eater. I never have been. When I was fifteen I ate a nice, warm spoonful of unseasoned lamb brain and washed it down with tepid beer. However, this traditional herbal medicine-based liquid was something I couldn’t stomach. The fact that I had doubts about it working didn’t help it go down either. Every gulp felt like a hopeless effort into stopping something in my brain that was virtually uncontrollable. However I carried on. At the very least, I told myself I would try.

I got through five weeks of treatment before deciding I had enough. I had a seizure on May 22nd of that year after five rounds of this traditional Chinese medicine and declined another appointment with the herbalist. Actually, thirteen year old me threw a fit and my parents didn’t bother fighting back.

--

I think my mom thought she was doing more good than harm, and realistically there was no harm done, but the more “remedies” for my seizures that my mother tried, the more exhausted I felt. Over time I started resenting her for putting me through the wringer: I felt smothered and tired and I wanted all of her tactics to stop. I was at peace with the idea of dealing with infrequent seizures without the aid of medical intervention.

Eventually she toned it down. When I got headaches or had seizures she was loving and attentive and as I got older I felt less smothered and suppressed by her constant worrying. I’ve since moved out and I only see my parents every other weekend, but I still get a text at 7:30 in the morning and in the evening every day reminding me about my meds. For that I’m thankful: I would forget most days because I’m a little absent-minded in the morning and usually just shut my alarm off and immediately forget about taking my meds.

I always made it clear to her, though, that I love her and I never blamed her for my epilepsy at all. I never understood the guilt she carried until I got older. I don’t currently have kids but I can’t imagine watching your child suffer and not be able to fight the battle for them. She still comes to appointments with me, and it hurts my heart to still see the guilt in her eyes, even though she isn’t as expressive about it anymore. These days, she just looks tired.