This is the continued story of the girl with the helmet, she doesn't use it much anymore for she can no longer walk.....drawing is very different for me than it was but I must keep trying. Reading has slowed down much as well. I have been diagnosed as having epilepsy, autoimmune disease, and distonia among other things.
Welcome to the wild wicked world of seizures, you travel forwards but in a way it's reverse. Your friends grow up and move away, they have kids and husbands .......but you got stuck, all that traveling forward made you miss so much you didn't quite change the same way.
I don't know what I think of it all.... but I do know that I have a headache the size of Alaska! Yeah, it's bigger than Texas.
I'll just be rolling onwards.
I had to purchase a new tablet if I wanted to continue with the digital world and.... My last one wasn't very old but I had to find one in the same format because I operate on my own memory instead of sight for the most part.
I have been not doing well, I can't seem to get over a stomach bug.
Oh but I am happy...... because grandpa is getting better!
I have read so much braille I literally have calluses on my fingers so I better get over this bug!
Soooooo...... lots of seizures, epic ones, times of vomiting and just being out of sorts. I hate Gastroparisis or however it's spelled! I do hate seizures and just just just......I am really struggling with not being able to see honestly.
My hair after five years has finally grown enough that I feel properly covered to go without a wig or a hat , I am glad about it and a little surprised.
Not everything is bad I am...... humanly frustrated.
I am afraid because my grandpa broke his neck, but he is a strong man.
I read my Braille Bible and I pray.
I pet the dog and line up my dolls like I do.
I don't know what to do with myself as much, can't respond to letters so well anymore and I am amongst the tribe of the paper people and I love it truly however I cannot see what I write.
I love my grandpa.
I leave it to God.
Pain , seizures, a fall, Botox because of Dystonia and somehow there's a happy place?
Smiling, laughing why???
I quite frankly don't know.
A car ride? No.
I like the doctor..... and he knows who Robert Liston was.
That's cooler than cool.
Yes, perhaps that's a lot of it.
My cousins did visit me before they left.
Plenty of reasons to smile really.
And when I finally came home gifts from friends were waiting in the mail.
Seriously there are things that lessen pain, and joy is something intoxicating.
Oh how I miss the cabin in Virginia that is no longer mine.
It was a mere dream to live there.
No phone reception, no computer and no television.
Simple , and thoughts are not easily interrupted.
But it was just a dream, it was fleeting.
Like my parents marriage, my ability to walk and see....and so many other things, they drifted away.
And my life is drifting.
Seizures here, seizures there, and everything is mixed up good.
This I do not enjoy.
I will hopefully wake up someday and it will be over...no more drifting.
Until then I will be rolling onwards.
So I was having some issues with my old wheelchair, it was moulded to my shape years past and I weighed about twice what I do now.
It took over a year to get it and I used it for years but my scoliosis is worse and it was hard to stand sitting in there very long....and it didn't fit in the car.
I took a risk, I found this tilt green padded chair for kids from China on Amazon...the chair is nearly perfect, my torso is a little short.
It's a 14" chair and just fine, it has breaks at the handles and breaks for me.
This is going to be hard for you to believe possibly but I went slightly crazy and popped a wheelie and dented the anti tip wheel place a bit.
This is my favorite wheelchair I ever had!
I was sad I couldn't get pink but hey, colors are not everything.
Also there's something people need to understand, if I am laying in bed and you visit me, sitting in my wheelchair is not appropriate. I had someone damage one of my chairs and they laughed about it, it's seriously my legs. Don't break them.
If you want to sit on my chair I can tell you the weight limit and you better not lie, this is no game.
Yup that's about it.
So quite a bit of my life has been spent, lost in seizure land or perhaps Never Neverland... and I wake up and realize that everything has gone onwards, I go onwards in my own way but it is definitely not the same.
People grew up and have children now and I begin to wonder if this is how Peter Pan felt looking into Wendy's window only to find she had a daughter of her own, that Wendy grew up.
Some of my most recent adventures are stories in my own mind as I lay upon my bed, grand adventures of discovering a zydeco music in the middle of the forest with long lost cousins and rowboating to an island where you need not speak but simply look into the eyes of those who live there and if you are strong enough you will hear their stories.
Lands of swirling sticky bright colors like a melted lolly that twinkle like a wind chime.
Lands where I must travel to alone....I meet strangers.
I am a time traveler and I can go forwards and it's very exhausting....but I don't very much know what to do about the lands my mind brought me to.... and when I come back, this world is so dark and blurry I am really quite honestly out of sorts.
