Happy Purple Day for Epilepsy! (March 26th)

https://digitalcitizen.ca/category/writing/March 26th is Purple Day, an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. It was founded by a nine-year-old named Cassidy Megan in 2008, who I am now super fortunate to call a friend, and have as a sewing model for me for the women’s garments I design and make as a hobby. She is an amazing and amazingly classy activist, as not all activists are by any means, and it is a joy to watch her in this role, from formal events to informal weekly online sessions she hosts with her Mom to help support those wanting to reach out, share, learn, whatever. Some of the achievements by this phenomenal young woman is in the Wikipedia page for Purple Day, and the Purple Day website itself are just astounding, and I am wishing her, and all others who celebrate Purple Day, whether or not they have epilepsy, the best for the day and year to come!

Myself, I’m not sure I have epilepsy. I’m not sure if that qualifies as “interestingly enough”, “oddly enough”, “curiously enough”, or some “otherwisely enough”. However, I’ve been on medication for it since I was ten, when I was struck in the back of my head by a frozen orange hockey ball from a slap shot. Some guy didn’t look during warm-ups to see me going to pick out some balls from a goal net that were there from shots on target, which removed them from use until someone picked them out. I was knocked out cold, but brought back to consciousness in the parking lot where we played, and actually played with a sore bump on my head, which I didn’t of as being anything more until that night when I had my first seizure. It was slightly violent that after some initial wild movements in bed, I would flex all my muscles and do so for hours, resulting in me being very sore the next day, and several days after that as well. You try flexing all your muscles for as long as you can, breaking occasionally if you need to, for like 4-6 hours and see how that feels! A day long or longer headache also accompanied the soreness, just to make the aching uniform throughout the body, it felt like.

In the coming weeks, months, then a few years, more seizures followed, but only in my sleep after some mentally tiring days or evenings. They weren’t predictable, probably averaging a month or so, on average, which was still a decent part of life being sore. For this, I was prescribed phenobarbital originally, even though my neurologists weren’t sure I had epilepsy. I could have had what could have been concussive side effects. The electroencephalograms (EEGs) they had me take, tests that detect electrical activity in the brain using small, metal discs (electrodes) attached to one’s scalp, weren’t conclusive, either. It didn’t look much like what they had seen of other epileptic patients. However, I had seizures, and there were seizure drugs, not limited to only certain causes of seizures, so I got prescribed seizure drugs.

When the phenobarbital didn’t work well to reduce my relatively low frequency of seizures, while causing other symptoms, my neurologists moved me to carbamazepine. That reduced it the seizures to an average of once every 2-3 months, even though they were still unpredictable, without any noticeable side effects. Further, over time, we determined I could take pretty much the minimal dosage produced and get this benefit, while taking more didn’t seem to help any. As such, we stuck with it, and I have stuck with it ever since.

These days, I might have seizures only once every year or two. However, its spectre still looms that I don’t go without the carbamazepine because in a few trials where I went without it, I either had or felt onset of those seizures, needing to wake up and really engaging my mind fast and furiously, like washing my face with really cold water, but then prolonging it like with a hot shower, self cranium massage, and such, so I don’t fall asleep again soon. But then it leaves me really tired for the next day, of course, and in less than optimal state for any high performance, whether mental or physical, for the next few days. With some general health insurance in Canada, it’s a $9.10 prevention every 3 months with no known side effects, so really, why not?

But still no idea whether it’s epilepsy.

But what do I think, then, if it’s not clear? In general, I don’t walk around thinking I have epilepsy, no. I’ve never felt like I had it, as in epilepsy being a disorder that can limit me from anything, either. Compared to those who suffer from it, which is often far more than anything I have to deal with, I almost feel like an imposter to claim it! Those nightly singular lowest dosage pills? They might as well be just a vitamin, because I take them with one different, focused vitamin each night, knowing multi-vitamins are generally a waste of money for how some counter absorption of others, among other features that render them relatively ineffective compared to how many people think they work. I just take two vitamins, basically, as far as I’m concerned.

That said, I counterbalance the contradictory thought that I do have epilepsy. I’ve just got it controlled, and am growing out of it very slowly, that it’s been decades since I’ve even thought about it as having any real impact in my life so that I don’t really have epilepsy the disorder, condition, or whatever you want to call it, but rather epilepsy the annoyance. That’s not to offend those who truly suffer from it, but it’s my situation. I can hold both contradictory thoughts and views because intelligent minds can, and I have one.

Perhaps the biggest indicator of how I don’t think I have epilepsy has been my lack of association with the cause all these decades. I just didn’t feel I could relate to those suffering the disorder. However, I’m realizing that while my perception could disagree with my reality, my behaviour doesn’t have to reflect that. I could, and should, do more to help the cause. So for this Purple Day, I will pledge to learn, participate, and contribute more to my friend Cassidy’s Purple Day cause in the next and coming years. How, I don’t have enough knowledge to detail specifics now, but I see lots of opportunities from my exposure to her work, what others have shared with her via her online support sessions, among other things. That includes getting some purple clothing, or probably making some since they’re hard to find for a guy and I can make some, because the only purple garments I have right now is a cotton T-shirt of the Louisiana State University Tigers (LSU), and one purple and one mauve dress shirt!

We’ll just have to wait and see. I’ll report back in a year.

p.s. When I get around to doing the good versions of some muslins I’ve been making for Cassidy, they’ll be purple, too! She was a model who inspired some design challenges for me with the purple inclusion criteria!

 

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4 thoughts on “Happy Purple Day for Epilepsy! (March 26th)

  1. I live with Epilepsy. Because I do I was evicted from my apartment and separated from my Cat and have been shelter hoping for almost 3 years!
    The shelter where my Cat was supposed to be looked after for a while while I was in my new(?) apartment sane city was heresy and looks of the Cat taxi he was surrendered NOT by me! By those that refused to listen that I was am the real person…. Long nightmare that been that way since we only moved an apartment 2011 and had 5 females ask me if I knew that I was supposed to be evicted.
    I said no.
    I was taken to the hospital because I said that I was having a bad day of Epileptic seizures and I was trying to stay out of the hospital. I was taken there by a female cop!
    Too many rumors spread about me or someone similar to me that did drugs and drank a lot.
    Someone told me the rumors that I walked away from long ago when I did live in my apartment and I heard my little guy(my Cat) meowing at the door.
    From then I had no air conditioning in my apartment from 2015 to 2018. Even though I was paying rent, my A/C was included. My Cat went through dehydration that I had to take him back to the veterinarians after his annual check up to be rehydrated. I was taken to the hospital so many times that most doctors asked me if I was assaulted, because I was bleeding and bruised. Or I broke or fractured my arm too many times from Epileptic seizures it was to scary for them to believe, that it was just epilepsy.
    I was forced to Toronto and almost everywhere I have been since August 2018, I have had my AEDs stolen, books stolen, the assumption that yes I’ve always lived either on an Indian reservation or on the streets when I have done neither.
    I’ve been called every slanderous name because they thought they could reverse racism and against my Human Rights!
    I’ve been told that I’m drunk, or accused or assumed for being that or using drugs after I come out of Epileptic seizures!
    That and being talked down to as if my Epilepsy made me think as if I was only 4 years again!(just was treated that way!)
    I diagnosed with epilepsy just before my 21st birthday.
    I was NEVER treated as this until after 2011 when I relocated into my second apartment that I couldn’t break the lease for!
    I and the mover were refused to retrieve my belongings from my first apartment to hopefully finish my relocation. Because the either saw and or heard me donate bags of Clothes to Goodwill they have been stealing my clothing from my first “batch” that I carried out of my apartment to every other bag, even a pair a high tops and jackets that I bought or was given. I was given one jacket left it on the emerge bed alone for a few minutes and when I returned it was gone. This is a hospital with crucifixes in every hospital room but they don’t take responsibility for “lost and stolen property.”
    I’ve been taken advantage of too many times in the shelter, housing system.
    I was in an apartment since I moved out of my parent’s house… Everywhere but 2 places said out loud that they would offer housing help if they could. Everywhere a definite “yes”.

    They know who I am because have been stealing from me, or know who was stealing and paying people to steal from me!
    They have been doing this to me and my Cat since 2011!!
    Since I put some of my boxes in and let my Cat run around. Yet they still broke and entered my apartment and stole first my 2 boxes that were at my door still sealed!
    They want me to continue their guessing game to find out who stole what and when.
    The last superintendent I took one class in high school with and then when she was in my apartment after I had a small seizure after showing water damage AGAIN, I heard her voice say “she didn’t tell that in high school!”
    Years later.
    My friends were from the I volunteered with in Toronto, saw concerts in Yonge& Square, and luminato and not from high school.

    If these sick disgusting rumors didn’t start my Cat and I would still be in our apartment watching television, being on my internet….
    But I’ve had to deal with drugs more the I ever thought I should have or could have because I’ve never seen those drugs other then the news before 2018, 2019, 2020, 2021.
    Why should I have to or want to since I don’t want anything to do with that crap!
    Nor do I drink alcohol!

    2014 I was in hospital for EMU after I came back to that apartment that my neurologist couldn’t get ahold of the person that signed a consent form knowing that j was in Toronto not in Mississauga and was suppose to help with
    housing with the team. She never answered his calls!
    When I returned panicked that I HAD to return I went into Statis Epilepticus that later put me into a Coma in Mississauga!
    2015 – I wAs put into Statis Epilepticus again, in August.
    2017 – Again I was put into Statis Epilepticus when 2 teen age boys came into my apartment after the paramedics
    telling them that it was “Statis Genesis”, it was the scariest ride to the hospital.

    My last bloody Epileptic seizure was on March 23, 2021. The firefighters left my blood as it was on the street, as I was standing up talking with other responders.
    Someone talked to them after I flagged them down for help.
    These people finally know that Epilepsy isn’t mental health.
    I’ve even been asked if I was black, because of heresy rumor!

    You would think that these people would have a life instead of harassing and traumatising me and my Cat that was adopted out by someone with Identy theft. My identification has been stolen in Toronto too many times as my Ohip card and my Social Insurance number first the card then the paper only in Toronto were they stolen from me. Photos of me were taken of me were taken of me in both peel region and Toronto to tell me that I was banned. Why? December 2020 I had my wallet stolen and when it was returned my photo identification was stolen down the street from where I am. A metropolitan Toronto cop told me email which I did.
    When someone found out that I had An epileptic seizure when they tried to steal my wallet.
    He left for the weekend. Then he when he left he bolted out the building down the stairs.

    Police were there when I was given this phone just as every other phone I was given.
    To say, you SHOULD have privacy. Yes, we know you live Epilepsy but you know that we want you to be safe as most people do!
    You didn’t deserve to be evicted from your apartment with nothing to to say that you are evict or why and reason that you can take to court to rebutle them with help.
    Including how many times paramedics came for me because of Epileptic reasons and how it effected me and my Cat then and now me he was taken away because of his fur color(said out originally)
    Papers from my court case of sex assault on me because I live with epilepsy were stolen from that apartment and used for someone else…
    The counseling Center that I used to go lost funding and moved somewhere else.

    People I know not who said that they were going to put me into a Statis Epilepticus to put me a Coma in Toronto because they assumed that I lived in Toronto before 2017!
    I had an housing application filled out that my doctor was going fax for me yet thieves through out my back pack knowing that it was mine in the rubbage in the dark!
    Closed area too!

    I’ve been trying to get advocacy since Mike was my employment counselor

    • Hi Tabitha. Thank you for sharing your incredibly tragic story. That is very courageous and kind of you to do so. Unfortunately, I wouldn’t even know where to begin to respond in any way that is helpful, and I don’t live anywhere near Toronto to try and help more directly. Are there no other counseling centers where you can get help? Is going back home an option until things maybe stabilize a bit as you try to resolve one issue at a time rather than to have to face everything all at once, especially people who seem to only take advantage of you when you need help? I hope karma establishes itself in your life to rebalance your luck a bit to make things better for you again soon, if not stable and right, until you can move forward again.

      • Thanks for your replying on Epilepsy Day. There is rather are no one that I can have a one to one conversation with, especially now since my Cat was taken from me. My iPad, and iPod were stolen from me… Most of my friends we communicated after seeing each other by iChat or messenger because we lived far from each other.
        Or different countries.
        Now that these people still consider it a joke with home invasion of my apartment. Not telling what happened to my family or other people they weren’t supposed to know.

        Certain people are “if I can’t see her have one then it doesn’t happen!” They don’t believe that my Epilepsy can be that severe.
        Nor do they care.
        I’ve been found unconscious on sidewalks, parking lots, bus terminal even waiting for a bus with or without my lil guy in his pet stroller when I’ve went unconscious and dropped to the ground.
        With my lil guy in his pet stroller after we left his vet’s when either police or fire showed before paramedics in peel, one thing everyone all said as I woke up. I refused to let go off my lil one’s pets stroller. They had to carefully pry my fingers away so they could access me and make sure he was ok.
        After all that trauma / drama even more continued in the area in Mississauga where I was and no one to my knowledge was addressing it to me or with me.
        I continued to get hate mongering because apparently to some people my Epilepsy was a “scar for everything that I had done in my life!”

        I even had 4 large women dressed in black west, east, south, north, I called them reading their bibles when I was on the ground waking from an Epileptic Seizure!
        I was scared that the housekeeping staff member had never seen that either and the security got me away for my safety, the housekeeping staff got away as well and the 4 women were never seen again.

        With Epilepsy in the shelter system from what I’ve seen in 3 years in person other from outside looking in, drug paraphernalia is a grab bag.
        Finding an apartment after 3 years of being forced out of one because drugs were used around my apartment, not in it( at least I hope.)
        My lil guy was sick enough for his original veterinarian to be cautious and I was in hospital every month only for seizures!
        Before that relocation we were OK. No hospital visits frequent unless to the doctor’s appointments, that would be it.

        I just miss my life with my lil ones.
        These people think they have it made going into cell phones, computers and circuitry that isn’t theirs.
        No wonder shelters are more of a prison for people without records then the game players… Who know how to play the game!!!

        Well I don’t!
        I was having a bad day of Epileptic seizures that woman Ana and Jardine asked me “do you know that you are supposed to be evicted?!”
        I said “No!”
        That should enough, but they kept talking. Because they listened and believed rumors!

        I’m sick of it!!

        Grow up!

        • Oh dear, Tabitha. If you don’t have anyone to talk to, even family to take you back in for a while, I don’t know what to say. It seems like new options not yet explored are all you have left now. Is there any place that isn’t a shelter where you can go to see if they can help you? Maybe some place where you might have tried before, but not too often to lose faith in them yet? I hope you will continue to try because I’m really afraid of what might happen if you didn’t. I’m afraid to hear of your current situation and past already. I will hope and pray for things to turn around for you but that’s not exactly really helpful in any way for certain, but I feel that’s all I can do for now aside from being an ear for you to share your story and situation. And thank you again for doing that so honestly and courageously.

          Minh

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