Hello, my name is Linda McClure, but then you already know that otherwise you wouldn’t be reading this.
First, I’m not very tech savvy, at least not anymore. My brain doesn’t function like it used to. So, I will apologize for the starkness of my blog. It’s not a pretty page, but then life isn’t always pretty, is it? Hmm. Not a very upbeat start. Ahem, alright. Here we go.
I should have started this blog waay back in 2015 or 2016, when they first diagnosed me with epilepsy. That was a bit of a shock I tell ya. At age 49 to be burdened with an incurable disease, without warning, no family history of, and a life sentence of pills.
In a way, this ‘blog’ was created before now. But on someone else’s site—Sana Counselling of Vancouver, BC. I stumbled upon their Facebook page requesting followers to submit their stories to help spread awareness. I was journaling a lot back then. Talking to myself on paper while trying to make sense of my new world. So I figured, why not? Why not submit my tale of woe? Share the fact the medical system had failed me, couldn’t provide the care I needed without waiting over 2+ years to get it. But. I didn’t want my name out there. I didn’t want those who didn’t really know me to see it, or gossip, or ridicule, and judge me. I had to write under an assumed name a made up one no one could trace back to me.
That’s when Anne Paterson was born. A combination of names I’d picked out that sounded well together, easy to remember and pronounce. I still use it today, for my poetry.
I was both nervous and excited. The words flowed from mind to screen, rapidly covering each page as I typed spilling over from one to the next. I was shocked and surprised when Megan replied. My piece was too long but after a few edits, we had a piece worth posting. And so, it began, The Anne Paterson Stories.
What’s Your Story?
So, how does one write about their life? Their experiences that have brought them to where they are today? How and where do you start?
I mean, we all came from the same place, the womb. We all had the same milestones: first steps, first teeth, first day of school, first boy/girlfriends, first heart breaks, marriages, divorces, babies. The list goes on. But what about the really personal stuff? The deep dark stuff that no one else knows about. The things that scare you the most or keep you awake at nights, or made you cry? Deep racking sobs that you couldn’t control or stop? I guess you just have to take a deep breath and plunge in with both feet and just let it pour out and hope it all makes sense.
I had a normal childhood. Grew up in the ‘burbs. Surrey. Sshh…don’t tell anyone. (Actually, South Surrey. Or, like everyone would say, ‘I live in White Rock’). Got married young. Too young (21) and had one child. Life was ok. Was a widow by age 41 and by age 43, I found myself in another relationship? Dealing with the pressures of a high stress job and the complications of blending two families, was enough to trigger my first seizure, Dec 23, 2011. I was 46.
It occurred in a Bikram’s Yoga Class. I used to take these classes before I met my boyfriend and LOVED them. He gave me the sessions for Christmas. It was my 3rd class, and I was rocking it! (Apparently literally). From what I was told, it was a full on Grand Mal seizure that I performed for the whole class. Chewed the heck out of my tongue as I did the worm on the sweaty floor. I was taken to the hospital and all the usual tests done. They found nothing. Figured I was dehydrated, even though tests didn’t confirm that, and sent me home saying a referral was being placed with a Neurologist. Weeks went by, heard nothing. Went to my doctor to find out what was going on. No referral placed, so he sent one in. Oh, and by the way, WHY ARE YOU DRIVING??? No one told me I wasn’t allowed to.
Because my referral ended up coming from my doctor vs the emergency room, it went to the bottom of the pile. So, I paid to get all the tests done privately to help speed things up. Didn’t make any difference. By the time I saw a Neurologist I was told I was fine. Nothing was found. Just one of those ‘things’ and it probably wouldn’t happen again. Off you go…you can drive…no medications necessary. Woo Hoo!!
This first experience was scary of course but I was more frustrated with our medical system and how many cracks there were in it. From the mishandling of my case by not informing me that I could not drive to not submitting my referral. Poor management in my view. But hey, there was nothing wrong me, right? I wouldn’t step foot back in a hot yoga studio again, but that was my choice. Life was good!
Well…for a little while…
Anne Paterson – Part Two
So, life was good. I was given the green light to drive again (get it? Green light…drive…lol) and I regained my independence back. God! It felt good. I was never much for jumping into a car to just take a drive somewhere. I was a point A to point B kinda girl, but I sure missed not being able to do that. It was only 6 months but felt like a lifetime! Don’t get me wrong. Things could have been worse. But after that things started to go downhill.
Stress is one of the many triggers that can cause a seizure. Doctors have told us over the years that there’s bad stress and there’s good stress. There’s work stress, but I liked my job and found it challenging. Yeah, I’m one of those weirdos that gets off on actually wanting to learn and work long hours. Such a freak! And there’s home stress.
Blended families and the Brady Bunch concept of the 70s is a thing of the past! The honeymoon period was over. So much so that I looked for reasons not to come home. I worked late and/or went to the gym. When that wasn’t enough, alcohol was added to the mix (no hard stuff…I drank beer…lol). By Christmas 2013 and after face washing the boyfriend with a handful of ice cream during a fight (oh yes I did!), I had had enough. By June 2014, my son and I had moved out.
I focused on work, exercise and my general health. But then added to my stress by signing up for some heavy duty courses. Hey what can I say…I’m my own worst enemy. Oh…did I mention that I was still seeing the old boyfriend too? I know…STUPID STUPID STUPID. By November 2014, all of the stress over the years must have caught up to me. Something triggered the time bomb in my head and the countdown started. TICK TICK TICK.
I had been out late with co-workers for the annual team building and experienced what appeared to be my first seizure. I thought I was perfectly normal (whatever that is). Just had a sudden feeling of nausea. Apparently the lights were on and no one was home. You all know the drill, right? They wouldn’t let me drive home (what’s their problem??? It was my van! Sheesh!). After that…45-50 minutes later…I was fine. All was good.
December 2014. I got what I thought was the flu. Was home ‘sick’ for a week. Had nausea but no fever (or any of those other nasty, unmentionable symptoms that usually come with it). I slept a lot. It was a strange flu. It felt ‘different’. It had that rising up feeling that you would get before getting ‘sick’. Like when you feel scared. When you screw up big time at work and are afraid you’re going to get canned. You know what I mean? This weird feeling would even wake me up at night. Almost take my breath away. Didn’t think much of it. I had my flu shot. It stopped and then I went back to work. Then it came back. On and off for month or so. But it was just stress…right? Work was busy and I was getting ready to go away. Finally taking that trip back to Disneyland with my son that we’d talked about doing for years. Turned out this was a warning that things were about to get worse…more so than I could imagine. We set off to Disneyland March 3, 2015. We had a blast! A 49 year old mother and 20 year old son acting like little kids…it was awesome! We were gone 4 days. But 8 days later…my whole life changed.
March 15, 2015. Remember those warning signs I had before? Well they decided not to give me a head’s up this time. How rude! I had been out the night before (remember that ex-BF? Yeah, well, let’s just say, up too late and too much alcohol. STUPID!! AGAIN!! Will I ever learn??). Woke with a real bad headache next day. Go figure! My son was out and I was setting up for a Netflix marathon. Got the X-Box all set up to go…went to the bathroom…BAM! That’s it. Nothing. Seriously. Nothing. No warning. No Avon calling. Nothing. My son comes home 3 hours later…finds me on the bathroom floor. (This was at 3 pm Sunday).
I was taken to the hospital. They weren’t sure if I had had a stroke or what. I have absolutely no recollection of any of the tests done and wasn’t even aware of my surroundings until about 3 am Monday morning. It’s like someone ripped pages out of a book that is my memory and burned it. Never to retrieve it…ever. Scary concept, huh? It’s bad enough to have a burglar come into your home and steal a prized possession which is never recovered. But in some cases it could be. A moment in time cannot.
A Neurologist was to come see me but was unable to. They said they were discharging me and would put in a referral. Remember last time?? I wasn’t falling for that again and definitely not slipping through any cracks this time. Still dopey with Ativan, I was alert enough to state, and I quote ‘I’m not leaving this hospital without an appointment with the Neurologist’. Yay me! Geez…I’ve never done something like that before! Lol. I got what I wanted though. My appointment was scheduled for March 26, 2015. I was told I seized for an exceptionally long period of time. I was told that I was lucky that I didn’t experience permanent brain damage due to the lack of oxygen to my brain. I was told I was lucky to be alive. WOW…really?? That’s a lot to take in. Oh, and by the way, NO MORE ALCOHOL!!!
This was good. But it wasn’t. This time was different. This time they put me on pills. This time…I was scared…REALLY SCARED. I was afraid to go into my bathroom where it all happened. Seeing the cold ceramic tile floor that I must have thrashed around on. Maybe? Did I? Was my head banging on the tile? How hard did I fall? Did I hit my head? How long did it last? What exactly was I doing when it happened? I don’t remember. I have no memory. Nothing. My mind is blank…empty…void of any thought or image. I was so scared I couldn’t be left alone. It took me weeks to be able to stay at home by myself. I joked about a 50 year old woman being babysat by her 21 year old son and 82 year old mother! Pretty sad, eh?
Unlike last time, the system didn’t fail me. Thank GOD for sisters and her friends in the medical system who actually know what they’re doing! We had connections this time that wasn’t there before. I had my MRI and Sleep Deprived EEG all completed by April 30, 2015 and sat down with my Neurologist May 7, 2015 for the results. There’s a scar on my temporal lobe. It was missed in the last MRI. It’s Mesial Temporal Sclerosis…or something like that…you have Complex Partial Seizures…not grand mal or is it petit mal or tonic clonic…I don’t know…all I know is I have EPILEPSY. I have it for life…you have to take these pills for life. Oh and by the way, NO MORE ALCOHOL!! I think I get that now.
But my story doesn’t end here…there’s still more to tell.
An Author is born
I was famous! I’d written something that was published on the internet. How cool was that?!
From 2016 to 2019, a series of posts were added to Megan’s blog, long buried now in a deep well of archived postings removed from the web making way for others. I honestly believe writing those pieces helped get me through those early days, to some extent. It was almost cathartic especially for someone like me. Verbal expressions of how I felt were foreign and uncomfortable for me. I was far more comfortable writing things down. Was more honest with myself and how I felt in the moment. Scared, angry, sad, worried, what have you. A piece of paper, or a screen for that matter, can’t ridicule or judge you, roll its eyes, claim you’re exaggerating things and blowing them out of proportion. They sit quietly, taking in everything I have to say, listening without butting in. The white starkness covered in black markings, or blue, red, or green, are both friend and therapist. I still see them regularly.