Things inside your head, Michelle, don't always translate well to thejamjar.com
Case in point: Tuesday's blog post.
Just so you know, that post was written a long time ago after a client kept moving the deadline and increasing the scope of a project. Does that help at all when reading the post? Probably not because the post doesn't really get my point across and I know the details!
It’s like this:
You want us to run a race for you. It’s a fast race and it’s hard race. And although we’re trained to run - we’re really good over a set distances, over specific range of terrains. You like us but you don’t like that terrain. You want us to go cross country rather than by the road - shortest distance between two points, and all that. We can do that, but it’s going to take us longer, we say. You don’t want us to take longer, in fact, you want us to break all our previous records and do it for the same cost of materials a road race would cost.
You’re a sweet talker. A charmer. We’re eager to please. Ready for a challenge, we express doubts about the success of finishing, let alone breaking any records, but decide “Hells bells! Let’s give it our best shot - we might just be able to do this.”
On your marks; get set; GO!
We’re off, we’re running. The terrain is uneven but we’re managing so far. We bought new shoes to suit the environment. We changed our carbo-loading routine to account for the extra energy needed to clamber over rocks and rivers. We’re full of energy - we’re powering ahead.
Then one of our new shoes breaks - the left one. Falls the fuck apart and we have one bare foot and one shoed foot. Have you ever tried to run on *any* surface with only one shoe? it slows us all the heck down. One of our team breaks from the race to go to the store to buy new shoes. We can’t just buy left ones, because shoes come in pairs, right? so that’s our shoe budget blown to smitherines. We continue, hobbling unevenly along - blisters on one foot, the other raw from the rough unpaved ground underfoot: but we’re still moving forward.
We’re using a lot more energy than anticipated now too - not sure how that will affect us on the race but we’re still pushing ahead.
Our teammate comes back with new shoes for everyone in the race. We stop for the amount of time it takes to put new shoes on. He bought socks too so now our feet are ensconced in comfort, support, and reliability. We power on. Renewed in our desire to get to the finish breaking all previous records. The hope in our hearts powering us forward.
But we’re slowing down again. The terrain is even more rocky and uphill than the map you showed us indicated. Our calorie intake is below what we need for this amount of effort. It feels more and more like we’re running up a continuous, rocky incline.
So you notice how hard the going is for us. You also notice that at our rate of forward momentum, we’re not going to break those records you wanted us to break. We watch you drive to the finish line, get out of your car, and move the finish line away another kilometre. After driving back to where we are still running forward you say “We saw you weren’t on track to break any records, so we’ve moved the finish line and you have more time to get there. Also, wear these coats - now you have more time to get to that further finish line, you can have more drag.”
Okay so we have a burst of speed. Our shoes are hold well, energy is pretty good but not great, but the heat and drag from the coats isn’t helping - neither is the fact we need to find the extra calories to run the extra kilometre.
But we keep going. Hope in our hearts, and all that jazz.
Then you move the finish line again, adding add hats and gloves.
We’re struggling - still moving forward but bogged down with the extra layers of clothing, and the ability to maintain energy is really starting to look like it’s going to be a real factor.
We run day, we run night, we are running on empty, but we keep running.
Then you move the finish line again. Even further away - and add skipping ropes for us to jump while wearing coats and hats and running and we’re tired and we have nothing left.
Then you move the finish line by 10 more kilometres.
10kms!
“With all this extra distance to run” you say, “now you’re used to the rocks, the incline, the extra layers of clothing and the physical challenge of jumping rope while running cross country - we think you can put on eyepatches, and not use torches during the night while running. Okay? GO!”
We’re still moving forward - but our hearts are broken. We have nothing left to give. We gave you everything. Now we’re just running. Forward. Hot. Hopeless. We’ll finish, but we’ll be broken and not much good for anything else anymore.
I was at the Neurological Day Stay Unit (NDSU) the other day for a check-up. It was my first “real” check-up since I had my seizure nine months ago. It’s been really frustrating not being able to speak to a medical professional who specialises in epilepsy as my GP really just isn’t across this diagnosis enough to answer my questions. Plus, the people’s names on my prescriptions and hospital discharge papers are impossible to contact.
After rereading my previous post on my temporal lobe epilepsy diagnosis I can see I have conflicting information. For instance, in the post I say that I am “relatively typical, age-appropriate” for this diagnosis, where the Doctor at NDSU said it’s “unusual to present with these symptoms" at my age. So which is it?
And this is a big part of what I find frustrating - the not knowing. I don’t know; they don’t know how or why this is happening to me now.
At the hospital in June 2016 it was suggested that it was tied to dropping oestrogen levels; at NDSU I was told there was no connection between oestrogen and seizures but there was with progestogen but not in my case.
I pressed again (again, again) as to why; why? Genetics? I haven’t had head trauma. Why?
The doctor said they’d done some research in epilepsy related to antibodies in the brain, and I’d been tested for the known antibodies and returned a negative result but, he said, I might have anti-bodies they didn’t know about yet as it was such new science.
Public Service Announcement: don’t Google “epilepsy” and “antibodies” if you don’t want to read about “autoimmune disease”. Just let that particular sleeping dog slumber.
In the end he must’ve got annoyed because he said “it doesn’t matter why; you have it now, let’s deal with it.” Which is doubly annoying because that’s exactly what I’d say to myself if I were him.
Blah. I still want to know how and why.
Yesterday I was in bed watching One Direction videos as my usual weekend morning computer-time these days. The temporal lobe wants what the temporal lobe wants.
The auto play feature dialled up the next video and rather than the expected 1D, it played The Graveyard Train singing a song called Rosalie. It’s a song I’ve had trouble finding video of them playing in the past, but I know I have my own copy from a time I recorded them played in Melbourne. So I went to my YouTube channel and scrolled through my own videos to find it.
I have made quite a few videos over the years and one caught my eye. I posted it yesterday if you’d like to see: it’s a video and story about how we bought the Mini when I lived in Australia. I played the video. It was completely new to me.
Not only did I not know the story; I did not have a memory of making the video. If you see the video you’ll note that it’s edited from footage mostlyfrom a GoPro suckered to the car - and I don’t remember that. Did I own a GoPro? Was that Iain’s GoPro? I don’t remember ever going to Willo’s folks place but there’s Rick trying to fix the Mini’s failing trim. I recorded and edited and voiced over that video, but I have no recollection of any of it.
I decided to share this with Fox and fired up HootSuite to Tweet her a link - as usual, I couldn’t remember her Twitter handle - so I opened her website, clicked on the About menu item and BOOM, there’s a photo of Fox marrying James. FOX IS MARRIED TO JAMES! I did not know that! Sure I know there were together but I didn’t know they were married! Greg came in because I was pretty much yelling this out loud to myself. “Sure you did; you knew that!” he said.
<big sigh>No, no I didn’t. It’s another memory that I have discovered that is gone.
I don’t know which memories have gone until someone mentions them or I find photos: Allania’s graduation; every Webstock before this last one; trips to USA, Australia, Europe; restaurants; movies; concerts; going to Frazer’s house for BBQs (multiple times, apparently); six months of work (minimum); how to use an international airport.
Blah this is the worst thing about my seizures. And the thing that scares me most about having another one.
Having those videos helps. I watched quite a few of them yesterday and they hold many of the memories the seizure wiped. Same with reading my own blog. With hindsight I have to say thank goodness I filmed so much; thank goodness I stored so many memories here. With that in mind I’m going to shift my idea of why I have this blog. Sorry, Dear Reader, I’m going to change the audience for this blog from all-you (you didn’t even know that, did you?) to a little-bit-more-me. If my stupid etch-a-sketch temporal lobe decides to shake itself clean again, I’m going to need a reference to get me started anew.
Another thing that I realised at the NDSU was that I don’t know my medical history well enough to repeat it each time I have a new doctor. And to be honest, I only know what my family has told me. I was unconscious every time so how am I supposed to remember all the seizures and when they happened and what type they were etc. Doctors really do expect a flipping lot of us. Imagine asking a person with memory problems to remember to take medication? or even to let them know when we forget! How the heck am I supposed to know if I’ve forgotten something like that?
So indulge me while I turn to video more from now on. It’s easier to re-absorb the information for me later when I need to dial up a memory, and easier to find if they’re here.