Life changes and so must we

Writing was so much a part of my life that I started talking the same way I wrote my poetry. When I worked on a book, not of poems but stories, my ideas came out in my speech. Writing was like breathing. I had to do it, I felt, or die. What once took mere moments to compose now takes several minutes, or hours, or even days, if I manage to complete it at all. I feel like I am gasping for air, struggling to breathe, struggling to put together what once was so simple it seemed like child’s play. I feel like I am drowning in all the words that fill my world. It frustrates me because they are there within reach, yet too far, too scattered, to pull them together and make sense out of. They have become nothing more than grouped together letters with no sense of structure, no ideas, just meaningless jumbles of letters. 

 

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Possible repost…

There are so many things I miss doing, not all of the time, just at certain times you know.

 

Like walking Scotty. I used to do it several times a day when I could, even when I didn’t feel like it I walked him at least a couple, especially in the evening or just as night fell so we could just wander peacefully and I would look at the stars and he would follow the scents of the day. I never had to worry too much about over doing it because he could sense when I needed to come home.

 

Then I broke my right ankle real bad and it took almost a year to heal and even then the doctor said the bone didn’t look strong enough for me to walk safely without a walker. And even then I wondered if I should be at all, but I did. In fact I did so, stupidly, without my walker. Broke both legs badly.

 

You are probably wondering why on earth I would do such a thing, just get up and walk without the walker. Well Alzheimer’s tends to make you forget things and walking was something I had told myself I would do for as long as I could because I knew the day would come when I couldn’t.

 

I have another condition I was born with and has been quite a problem, though I almost never talk about it, mostly because I tried to pretend as long as you can’t see anything wrong, then there wasn’t. I hated being treated differently and they made sure I was all through school. Unfortunately there are many people who thought this brittle bone disease was something they could catch from me. So when parents found out you had the pitying ones, whom I can’t stand either for very obvious reasons, then you had the stay away from her so you don’t catch anything. Then you had the ones who said, “Don’t play with her or touch her because if you hurt her, her parents might sue us and the school.”

 

No, they never said this to me, though I got some of it from their kids. Whether they said it to my parents I have no idea.

 

Why am I suddenly saying all of this now? Well I have had to live my whole life with Osteogenesis Imperfecta my whole life. Lots of broken bones, hurt feelings that I had to keep hidden, and a lot of other things that right now I really don’t want to talk about.

 

I am talking about it because walking has finally been taken from me. I had expected it for many years. Some doctors would be surprised I was walking for as long as I did. Fragile bones wasn’t the whole problem, my back is in pretty bad shape.

 

I’m talking about this now because I want all of you who can walk to enjoy it. Look around you really look at the things around you. I always did. I tried to appreciate every step I took. Like I do every breath I breathe.

 

People tend to live life and forget that there is more to life than simply going through the motions. I try to ask Ron and Trisha every time they come home, and Adrian when I see him after he gets off work, whether they had a good day. I honestly want to hear what their day was like- for them. Sometimes it helps them recall things they might have never thought about. Sometimes it helps in other ways too. People very seldom asked me how my day was when I was younger and now, being stuck in a bed all day, sleeping sometimes half the day I have little if anything to talk about.

 

I still try to appreciate things. Alzheimer’s has taken a lot from me. Almost more than the bone disease I was born with.

 

Anyone reading this, if you actually read this far, thank you. I have many things I am very grateful for. My family, friends, getting to watch the seasons change. Watch the animals play. Scotty really likes Trisha Rachel Sieck’s cat, Bojangles. I will put some photos up and I will try to get some of Bo and Scotty.

 

You see, Alzheimer’s hit me in my early 30’s it just didn’t get properly diagnosed until Ron moved me to WA State. We found a wonderful doctor who was bluntly honest. He kept up on things but admitted it didn’t look good. But he told me to try and keep writing and reading, listening to music, draw when I could not write. He threw me a lifeline and I have an app that shows me what to do each day.

 

My days mostly go like this: I wake usually around 8 to take my meds. Sometimes I fall back asleep, sometimes I stay up and try to do things. Read, write, crochet, whatever, and sometimes I just can’t make myself do much of anything.

 

Getting old stinks. There are so many things one wants to do. So many things one wishes they had done maybe even now, The most important thing is whether we learn anything living this too often rushed through life. What gems did we get out of the struggles we had what scars, seen or otherwise, did one receive while throwing themselves against a wall probably dozens of time before finally giving in. What would your story say to others if you let them read it.

 

What gifts has life given you up to this point?

HUGS

 

Reposting?

I cannot recall whether I posted this before and it feels more real now than it did when I originally wrote it so….

The world I find myself
by
Dallas Sieck
Sometimes I find myself tripping through life
Falling into holes
And dark odd places I would rather
Never heard of
Let alone fallen into .
Sometimes I find there is a shadow
Between the world and me .
Some days denser than others .
Some days a heavy fog
Hiding the world
Or maybe it’s hiding me
Sometimes the days are too confusing
Nothing looks right
Nothing sounds right
All I want to do is hide
Close my eyes
And forgot about the world .
But then the dreams come
There are a few good ones
But more often than not
I find that I cannot tell
Dreaming from waking
Fantasy from reality .
Time trips by too fast
Distorting everything
Confusing me .
Words ,
Once my friends
Come to my ears warped
And strange
The world Alice fell into
Was nowhere near as strange
And she had a way out
I have no way out of where I am

Life

 

Life

reaching deeper every year
baring our souls more
showing what we never dreamed would be seen
all the hurt
all the turmoil
all the pain built from hundreds of years
smiles can’t hide it
it runs too deep
fills us too full
it spills from one to the next
we cannot stop it
we cannot run from it
nor hide
forever prisoners
we make prisoners of our beloved
though we try to end it with us
it won’t be stopped
not till the waters run clean
and we are not in control of that
storms come and go
it isn’t whether we make it through
it is HOW we make it through
because despite it all
we will come out the other side
always changed
never the same
but you will make it
already in your eyes I see me
I see your grandmother and her mother as well
how far back does it go
how far ahead will it go
is there any way to stop the flood
there is never just one person
we are never as alone as we believe we are
and no matter what we do
we can’t shelter our children
and they can’t shelter their children
it is a never ending cycle
maybe one day
everything will have run its course
and we will feel the freedom once spoken of

 

Life is contrary…

(though some say you are just feeling sorry for yourself, even though they feel the same and never seem to feel sorry for themselves.)

When you have to be patient… but no one else does,

when you never have any privacy… but are in the one room in the house where EVERYONE is,

when you are never alone… but yet no one notices you are there,

when the world is crashing in around you… but you are told nothing is happening,

when life is sad… but you are told everything is okay,

apparently tears are meant for other people… but certainly never for you.

That one person everyone wants when they want them… but never when that one person needs them.

 

Shadowy times

Hello everyone. I know I haven’t posted in a long time, sorry.
I will try to get something written while I still can, honestly I haven’t written much of anything in a very long while. Not even in my journal.
I turned 54 Nov. 26th of this year. From my notes I know that the doctors finally diagnosed me with early on set Alzheimer’s early Sept 2007. I had actually began showing signs several years before.
I was doing quite well on the medication they had me on; Namenda and Razadyne then they had to put me on the Exelon patch because I had trouble remembering when to take the Razadyne.
For the last year Ron has had to put out only the meds I take instead of filling the box and letting me do it. I was sometimes taking the night meds in the morning. Now I mostly need to be reminded to take them.
Writing was not just something to use to communicate with others or even to simply remember thoughts and feelings or ideas. Or happenings. Writing was very much a part of me. Like breathing.
When you cannot breathe you die.
Words were and are so much a part of me that not being able to use them is slowly killing me just as much as Alzheimer’s and all the damage done to my body.
Many years ago, not too long after hearing about Alzheimer’s, I wondered what happens when you can’t communicate with the world any more?
These last few months, especially this last one, at have given me at least a glimpse of what it will soon be like.
Thing is I don’t know whether I am scared or not. I mean, everything that can be done has been done. There is nothing else that can be done at this point.
Alzheimer’s is very much a one way street. On a street that keeps getting narrower and darker and no turn offs.
I have been sleeping a lot and after not being able to sleep tonight I will sleep today, most likely, and through the weekend.
You know what it feels like when you are dreaming and pinch yourself? You feel it, sort of. Well that has been the way things have been a lot lately.
Everything shutting down, waking seems more like dreaming. Most of the time I can’t tell the difference. Especially on very bad days.
I cannot walk yet still I stumble around in either a fog or the dark and am shocked when it is clear. What will happen to everything I have written when I no longer can?
What do I do with my web journal and Facebook? I know I will not care by then, but will anyone?
Maybe I will write more later. It is getting difficult to make it all come together.
HUGS