Well, the TV and radio spot are done.  It actually went well!  ……  Much to my surprise.

I was quite certain I’d freeze, but I didn’t, not outwardly anyway.  It is airing this Monday coming, so I’ll post a link for you to view and listen once I have it if you’d like to hear it.

There was a specific question I was asked, ” how does EOA affect your daily life?, What has changed?”

I did not answer that question fully.  It scared me to death actually. I froze secretly. I’m not sure who noticed.

Each time I write a blog, I write about the things in my life that are happening in the present.  I have actually never put together all the things.

In the moment he asked me, I paused and ALL THE THINGS I cannot do entered my head all at once.  I had to pause, filter it and answer with whatever my brain left in the forefront. 

I spoke about eating.

I spoke about my brain not telling me that I’m hungry.

What I wanted to add was the magnitude that 55 years of living with the habit of eating 3 basic meals a day is no longer part of my life. It’s gone.  Not just the point of eating, but the need, the act, the habit, the action and the craving. Honestly, that’s pretty huge.

And there are so many other things too.  Habits , rituals, daily living skills, learned skills, it’s a pretty big list…..not to mention body functions and abilities.

So. I’ve decided to put together a list.

Eating. Math. Penmanship. Driving. TaskCompletion. Task Initiative’s. Walking/Gait.  Daily Hygiene. Cooking. Laundry. Sleep. Planning. Speech. Organization. Visual Interpretation. Recognition of objects and faces. Short term Memory. Time Span /Lapse. Mobility. Small Motor Skills.  Decision Making. Spacial awareness. Dark.Light. Colour. Smell. Taste. Timing. Clutter. Lists. Nose Running. Bathroom Urgency. Coldness. Muscle Atrophy/Loss. Pain. Weight-loss. Attention Span. …and so much more.

That’s quite a list.

I’ve stopped doing so many things as my small motor functions deminish.  Things even like opening cans with a can opener.  I don’t buy cans of anything now.

I don’t plan; I don’t make a mess so I don’t have to clean as much, I actually don’t use my whole apartment, I use a small focused area of it; my inability to complete tasks or jump from one to another has me exhausted running around like a squirrel from nut hole to nut hole, I do small things.

Time is irrelevant. My handwriting is aweful; and I loved my penmanship, like REALLY loved it.  So big, flowy, artistic.  Now it’s horrible.  Totally sucks.

I pause when I chat. Can’t walk more than a city block without pain. That cramps my style.

But listen.  Even though this list grows long, it is NOT my focus.  Absolutely not.

That’s probably why I’ve never written a list before.  It’s not that important.

Throughout life, anyone’s life, skill sets fall off. Mine, and those living with EOA are accelerated.

For me, it’s like inside my head it’s no big deal. It’s wierd.

I do not focus on that shit.  I honestly do my best to recognize either that is no longer a skill I have or , unknowingly to me, my body just compensates in other ways and I develop the secondary nessasary skills as a work around. I segue, in a manner of speaking. My brain is still helping me. It’s amazing.

There is a vacant spot in my heart regarding all of this and more.  But I endure.  I don’t look too much for answers to questions I cannot receive, I just let it be.  I live, I love, I accomplish and remain free of what is interpreted as a burden.  It’s a choice. It is freedom.

To the Warriors of this life, ( you know who you are xo) I stand with you, united and connected. keep on keeping on!

I’m happy with never writting another list.  I’ll just keep things in the present and let you know what is happening in the now. It makes for better stories.

My daughter was amazing during her portion of the interview.  My heart broke completely though.

Seeing her hold back tears and a trembling voice as she discussed my diagnosis, what it meant to her personally, how it’s changed our family and what the future holds, was extremely hard.

I didn’t want to say anything to her. I didn’t want her to have to stay in that moment for a second longer.  That is for another day. 

I love her with all my heart.

Stay well my friends, xo Jan. 
https://youtu.be/pCiYoBoyUYU