I recently went through an eye opening experience. After chemotherapy I fell often. I fell on stairs, the treadmill, the hallway; anywhere I walked I had the potential to fall. I assumed it was the result of neuropathy in my feet, and accepted that this was a side effect I would live with.
After a fall down the stairs I ended up with an infected wound on my arm. I went to my primary doctor. She asked about the fall and, when I said I had no real recollection, she suggested that I might be having seizures. I rolled my eyes and left. (I did see a neurologist, but he also rolled his eyes and sent me packing).
After breaking my heel I slowed way down. Casts have a way of reminding us that things are not normal. While wearing the cast I started holding onto walls when I walked, leaning against walls when using stairs, and always leaving myself 30 extra minutes so I could move slowly.
In October, I had a grand mal seizure. I, and the emergency room Dr’s, chalked it up to a one-off type event and I went home. I promptly forgot about it, although my kids did not, having witnessed it. By June we had all forgotten about it, so it caught us all by surprise when I had another one. That was followed by a 3rd on July 2nd, a fourth on July 23.
I am now on medication and, as long as I take it regularly, I am stable. The July 23 seizure was the result of missing a few doses of medication, and was a much needed wake up call. I am now religious about my meds, and my children remind me constantly.
Why is this important? It points to our need to examine our “truths” and really dissect them. The reason the idea of epilepsy seemed ludicrous to me was that I’ve always been “clumsy”. When I was asked to describe my falls I found the question quite crazy. I fell. I’m a clutz. I’m a spaz. I get hyper, don’t pay attention and turn into a lumbering nightmare. Watch out people!! I break things, I drop things, I fall, I make a mess…..I’m essentially a nightmare on two feet.
At least, that is what I was always told.
I had some reason to question this as a child. I was a cheerleader and on the gymnastics team, neither of which are heavily populated with awkward girls. To reconcile this, as our minds must do, I decided that I could contain my cloddish behavior when I wanted to. This was reinforced by a mother who got very angry when I was cloddish, essentially telling me that this behavior was voluntary; under my control.
I am now considered “epileptic” and I understand many of the things that happened to me over the years. Missing time, missing events, confusion about how I got from one place to another – all of this points to absence seizures. Why they took the turn and became grand mal seizures is unknown, but I’m grateful they did. I haven’t fallen, tripped, lost time or felt like an ungainly person since becoming stable on medication.
This is important because it demonstrates the impact of childhood scripts. It was easy for me to accept that my falls were the result of my own personal clumsiness, because I’d always been called clumsy. When my 1st neurologist suggested that we could perform a stimulated EEG I rolled my eyes and said “nah. I’m just a clutz”.
I’ve been dissecting what I was told as a child, and I’ve found it very helpful. I was repeatedly told I had an over active imagination, which led me to doubt almost every thought I’ve ever had. (That’s exhausting!) Actually, I do have a good imagination, but I am also very observant. I notice things most people don’t, which is really cool!!
Unfortunately, much of what we’re told about ourselves during childhood is unremarkable to us as adults. These words are the background of our day. They are the silent script that colors every move we make, every thing we accept as real, and it is not unusual to not remember what those words were. They move from words to truth easily. Unexamined, they become an arsenal for a narcissist to exploit.
The bad news – I can’t drive until I’m 6 months seizure free. While this is much easier to comply with during a pandemic, it is still really hard. I live in the suburbs, so I am stuck. Grrrrrr. The good news is I feel steady. I am very aware of my attention. I don’t feel like I’m in and out of reality; I’m in, all the time now. What a relief!