my big passion

I have a big passion now. Photography. Too bad I don't have enough time - I could spend days doing photos. Taking picture with the camera is not only one step. If you really want a great photo - you should spend lots of time reading theory on that. And photoshoping: not making stuff up but cropping, cleaning from "noise" and stuff just making your unique picture even more beautiful. This takes time.
I love this kind of stuff probably because it’s a part of life. Especially here in Alaska, I think it’s a crime not to try to capture the beauty around you. As they say – you don’t need to go anywhere just stand in one place and spinning your body with the camera in your hands. You can easily end up with hundreds of beautiful pictures.

Of course I couldn’t do anything without my husband. He helps me always and I’m just happy that he loves this thing too. So helping me here is not something he got to do but doesn’t really want.

irony of life

The irony of my life is that my granddad had the thing I have. Different reason though, he was a parachute coach during World War II. He had lots of jumps and doing that stuff he damaged his spine. Well, he was clumsy and all other things (not everything I have though) but he got laugh at a lot. And I was the one (I believe only one) who didn’t laugh at him. Even more I helped him the way I could anyway. I love my granddad, he passed away but I know he is in a better place now and looking down at me. I’m sure he likes what he sees I caught my dream for the tail J He was paralyzed at the end of his life, not whole body but legs. Well he was an optimist big time. I believe you could spend your entire life and not get that but he did. Really truly did. He was very involved all the time, especcially impressive it was when wasn't phisically able to gon places. He didn't have wheelchair (how sad) so he was "tied up" to his bed. But anyway - he was listening to the radio, he was reading lots of newspapers, books, he aws playing with crosswords, he was a Big Guy. I mean not his phisical body but his spirit.

Later in a life I got involved in volunteer work with disabled people. War veterans, disabled from birth but I really admired those people. Sometimes I felt like I look from bottom to top of a person, not how it was physically. Most of them were on wheelchairs. Some were with ruined arms by bombs and grenades. But they all are great people.

And now here I am. On a wheelchair more and more, first I got there only “for a moment”. And now it’s a part of my life.
Another thing what amazes me right now that when I was a kid I was listening “tails” about Grand Canyon, Hawaii and I thought that I want there so bad. But I would never get there. Well, I’ve been to Grand Canyon and Hawaii :)
OMG I’m so happy that I my little “never” dreams came true! And even more then that.

Thank you God for heping me to get here!!!

how do I do it

The secret is actually no secret. The life is in movement.
You keep moving no matter what, you fell down but you got to get up and keep going.
I have bruises all over my body :) like a teenager :) Most of the time I don't even know how and where I've gotten them :) And the point is that you just try to ignore it at least I do. It's just a part of my life that's all.

I do hate those buttons on the clothes :) But just try to play with little balls in hand all the time - this way you keep you hands ready. Having two or three balls at a time try them to keep in the hand without helping by other hand, just playing with it with fingers.
And for the balance my physio therapist showed me a cool exercise: you lay on the back on the half-round beam on the floor with your legs bended in knees resting on the floor. Then try to balance your body on that with you hands resting on the floor. Then lift up in the air both hands slowly, one then another, then both. It won't grow back my cerebellum but it definitely teaches other parts of my brain do the job.

To train my balance in the gym I do treadmill as long as I can (about 15 min) walking not hanging to the handle. But it has to be there anyway because whatever happens (sudden move or something) I got to be able to grab something quickly.

Another thing I do in the gym is to do cranches side ways (using 45 Degree Hyperextension Bench). I lay on the machine sideways and lift my body trying to keep balance. It's hard, very hard for me, but iI'm pushing myself here trying to improve my balance skills.

Another machine I always use is lat-pull-down, I only do it standing up for (again) impoving my balance skills. To keep my hands strong in case of falling down - lifting weights.

And…….Of course you have to be kind of spiritual. I’m not that religious (you know formalized religion just not my thing) but it doesn’t stop me from being spiritual. God created me that way means God had a reason to put me trough all I went trough. I was strong enough actually not to get to hate all the world, not to grab the gun and just shoot all people because they hurt me in the past. Thi9s strength God gave me. And I’m very grateful for that. I think because I took all that and managed it somehow I got rewarded. My life now is a big reward.

I love my life! Thank you God for giving me that!

my great husband

What I realized from my own experience and reading others people thoughts on this. It’s that if you have something making different it's just critical to have a partner which is always there for you. Not just understanding that you're different and needs a different approach, but helping you be yourself.
That what my great husband is for me. He is helping me be myself: it's just priceless. He gives me the opportunity to do things I've never been able to do. Like for example simple thing: when I was a kid I was dreaming about big excitement. Like let's say roller coasters were just out of my reach always. Because my physical condition I just couldn't do that childish thing :)
So that trim to Orlando Disney world was kind of revenge for me :) I was with my husband what could stop me from doing that? Nothing. So I got so much adrenalin in my blood - the amount I supposed to get from all childhood I guess :) And another thing: I was so happy to be able to walk around ALL DAY long. OMG it was unbelievable. Really, because 20-30 minutes for me usually is about all I could do; because of my fatigue. But being able to enjoy myself all day long is priceless.
I do have one dream though nobody (even my great husband) can do for me. Since I was a little child I was dreaming about it. Like I was wearing “princess” dress with lots of layers that it goes almost a trapezium from my waist. Wearing hills (I can never wear a hills in million years, I can’t even stand in them) and dancing waltz with nice violin on background with my great husband as a partner. It’s a just a dream which can never be a reality, but hey having a dream means I’m still alive and well :)

philosophical

I was thinking about people, about life.

Sometimes I feel real sorry for people because mostly they don't appreciate what they have before something major would happen. It's really sad because I' know it I really believe that despite life isn't tied with the bow it's till a gift. Real big gift. Life is too fragile for not to love for it is. Love every day and it will come back to you with the same. Everything in life has a price and you're suffering you will be rewarded. Bad days worse surviving just because there are a good days. And they always waiting for being discovered.

All people, every one of them are getting a chance, sometimes several of them during lifetime. The deal is that are you ready for that? First of all emotionally; I really believe that if you really badly want something - you are going to get it. One way or another. If you really want something you work on it.

Everybody around you could say "What a lucky guy! He just won a lottery!" and only you will know for sure what price you paid for this. Success is not a lottery the size of it depends on amount of effort you put in it.

I do love life, very much; but I was wondering though if I would be like all "ordinary" people if I would be one of them?
On the other hand I don't really want to think about it. Life is too short to spent it on "what if".

some thoughts

I was thinking.
I thought I was really fortunate in a weird way probably. But I could only imagine that if somebody had a life of “ordinary” people - normal moving, eating, everything and all of a sudden he got a disease. It's terrible; I think it's where people start taking drugs. They just know how it could've been and they are trying to get in this state again. I guess it's a way where people could start even abusing drugs; and as a result their own body.
Those people often don't accept the fact that they are just different.

I'm a different story I just don't know how to be a "regular kid". So for me accepting the fact that I was different wasn't a problem. I was different all my life.

I became a philosopher here :) Everybody is different so I'm really just a part of this society. I'm in fact in many ways like everybody else. I need to be loved. I need to be needed.
Just hope I could manage being helpful to the society for a long-long time.

my body

My body knows very well when it's time to decompress. If I'm getting too much information my vision becoming blurry. The problem here that what if I'm on the meeting or something. Right now I'm just pushing myself to the limits here. If my vision getting blurry and I'm still physically able to soak information I would focus. Well, trying to. I'm not sure though that it's a way. I could go overwhelmed easly and just drive myself to fatigue. I'm getting this condition anyway often enough but I don't want to volunteer to that. How manage this? I don't know. I don't want any medications because it always goes like treatment for one thing and at the same time absolute damaging for another. I'm really afraid of this. You never really know whatv thing would get damaged.

Fortunately I have my MAN who is taking care of me really good. And right now I'm able to unstress in the evening. Every evening. Compare to my early ages it's a huge deal. Because back then I only collected and add all the stress in me. Which could easly lead to insanity or something even worse.
I've got this relief just in time, it just couldn't wait any longer, I'm not getting any younger :) And then everybody could go like "why?"

Today we are going to walk (well, my beloved husband is willing to do phisical here :) I do only enjoying part) The sun is out finally and we are going to be there too :)
My perfect husband doing even very basic things for me like I never do the dishes, never do gardening, never do cleaning (well I do it a little but just for a change, to have some fun).
I feel like I'm in paradise :)

one more great day

As they tell "Every day is a great day if you think not try missing one".
I'm not going to try that I just believe it no questions asked.

it is a great day in fact, the day is looking good already :) Yesterday it was not that good. I've got my bad fatigue I'm always getting but there are good days and bad days for it. And thanks God I have more of a good days then bad ones. There is always a reason to survive a bad day anyway. Because after a bad one comes a good day. I love it.

We had a week of fall in the summer. But now - sun's coming up and we are getting our summer back :) Great!

routine

Everyday (actually every evening) my perfect husband giving me a massage on my feet.
You know, there are nervous connections there to every part of your body. There is even foot map provided by some scientists.
By the end of the day I always have headache migraine type. It's a not a severe migraine like a lot of people have but bad enough to drive me crazy. I actually have lots of bad things: they cal it symptoms of my disorder. But all of them not that severe like if person has only one. For example if the person has migraine as a disease he usually has it big. Like you want to taker your head off you or something, I have that as well but not that bad.

But reason I started talk about things here - my husband. He help me manage all that without medications. My neurologist was ready to give me a list (whole list!) of prescriptions. Strong ones, like some kind of antidepredssants or even narcotics. But I'm fortunate enough to be able to avoid all this. Great!

Love him for just existing in this world!

everyday things

If I do walking or something I need to think about what I'm doing: exactly what my next step would be and so on. Not philosophically but very particular where I put my foot next what would be possible thing to stop me from doing that. I did all that thinking for so long that it became automatic and not taking real big time so other people becoming too inpatient with me. So I’m not multitasking person at all but I just everything quickly.
But the thing is that I can't enjoy forest and walk at the same time. Well not by foot but anyway we found an answer to that. Great!
Another example would be my handwriting. It really difficult for me. Well, I can't do handwriting (if I do I often can't understand later what I wrote myself :) so computer came to my rescue here :)

My being alone in the past and not having the real choice of what to do had led to my today's great specialty in work. I was a programmer (not a bad one I think) and all those skills came together very good now. I am an Analyst right now, I love working with data love playing with them and trying to pull out of it something useful or just curious. And I love being able to give people back all the information I have, put in real use all the skills I've got.

I really believe that all experience I've got in life good and bad turned out kind of good anyway. One thing led me to be good specialist another led to have this philosophical way thinking.

I hate buttons on clothes though, I’ll tell you that! :) Sometimes I wanna torture those who invented it :)

something to work on

There is one thing though I think big enough to work on, however I’m really sure how.
All my previous life has taught me how to be alone and not be bored to death. The opposite even – it taught me how to enjoy company of myself.
And my present life has taught me how to be happy alone (I do consider my beloved husband as a part of me so really we are a one organism). It’s not all that bad as I understand. It means that I’m self-sufficient.
But anyway I am really in a learning curve right now how to interact with people, how to communicate properly. And thanks God I'm surrounded with really patient people. They are not pushing me too hard; they are not actually helping me. And I have my husband again who is helping me with this. I'm kind of “special” so way of thinking often is not the same as all others people. It leads to misunderstanding often. But like I told already really nice people around me all the time are making a big difference here. I feel blessed with this.

Even though I’m sad sometimes thinking nobody really likes me again, I’m an outsider again and so on. But actually I think it’s an issue inside me. I can deal with it myself.

Every day I meet with enormous greatness for being able to have all this. Because my life is a gift. Huge one.

I still have real difficulties with climbing the stairs, with any kind of movement generally and it's getting worse as I age. But all that made for me so much easier that most of the time I don't consider it as a difficulties at all. I feel like I do better now then I did 20 years ago.
All those difficulties are just some kind of little stops on the way that's all. Well, for example I have real difficulties with long walking especially hiking style of it and any kinds of rocks make it just impossible. Wheelchair is the answer to that :) And because one of my big problems is coordination I can't really operate it myself so my beloved husband is the key person helping me here. So all the beauty around can't escape my very admiring eye :) I love it. And he has some kind of benefit from it too as he keeps telling me: he has workout not being bored in the gym J In fact he keeps telling me that me being happy making him happy too.

brand new life

Only much later in life, about four years ago I was diagnosed with cerebellar atrophy. It sounds pretty scary but really I was relived. I felt like a huge boulder just felt off my shoulders. I wasn't imagining things; I wasn't kind of insane person or just bungler. I was kind of “special” but only by limitations I have.
In fact I'm in best shape of my life. I go to the gym regularly, I'm kind of “health” freak in a way I'm eating :) I never get to really dangerous places just because my brain draw really scary pictures for me then, like I fell down from something hit myself badly and it would be blood all over the place so basically my brain is saying to me “don't even think about it!” And scare me to death :) You know that feeling they call “intuition” - that's it. So this “intuition” actually is good for me because I don’t risk my life too much.
Then wheelchair appeared in my life. Gosh, what a thing! I am finally able to enjoy green surroundings, blue sky and everything in between not getting this terrible exhaustion. I feel like a kid in a candy store often :) I love my life! I just really enjoy every possibility I get to have fun like every “ordinary” person do. I really love being able to walk all day long through different parks and even being able to enjoy all that excitement I couldn't have as a child. I have it now! Well, some people think – it's so good for her she could manage to keep this kid spirit. It's a little different for me I have this kid stuff for the first time in my life. I just got to be a kid little bit later in life then everybody else did :) And I accept it! I wonder now though what would be teen years like for me now in my age :)

My present is so different from my past that I can say that I've gotten a brand new life. A great one.
I consider myself really lucky.

someone to love

Lots of things, really bad things happened to me back in that time: like for example when I was trying to come out from a bus and there was no handles. So I literally fell out from it and the bad thing was – there were two guys who just parted to let me to fall down to asphalt more “comfortable”, it was realty painful physically and mentally. Why I still remember it? I don't want!

So I was really surprised and couldn't believe that someone (it was my future husband) paid close attention to me. It wasn't distrust to my beloved husband it was really distrust to myself. It just couldn't be. Ever. I thought at first that he did like people earlier in my life did. One person just plaid me like he liked me or something, I believed him. I really thought there was some kind of chemistry between us. All that was just to have fun later in front of his friends; he was laughing at me. It was painful, very and led me to this distrust and lowered my self-esteem to floor level. I was really afraid to be a person to laugh at. Again.
So now someone really paying that much attention to me. Not a fake attention, I felt probably desperate need to believe in it so I did. I started to believe that it was real. It was with me. Well, then real big fear came to my life. I was afraid that one day he would discover what kind of person I was (clumsy and bungler) and throw me out of his life. I was really scared at this point, I was afraid be alone again. And not only that I already was connected to him in every way possible so to throw me would mean to literally kill me. It was not nice place to be in actually. As much as I learned already how to be alone as much I wanted someone in my life to give my love I did have at that point but I didn't have opportunity to share it. I wanted desperately to love and to be loved.
And then he made me believe that he was not going to go away. I don't exactly remember at what point in my life I realized that no one was going to throw me out. It was a happiest day in my life!

sunrise

I went to University.
From this point on the sun started rising for me but I didn’t know that. All I knew was that finally I reached the point in my life I always wanted – everybody left me alone. And actually I was kind of enjoying it but on the back of my mind I always had that urge to have someone really interested in me. Someone who would just accept me the way I was no questions asked.
There were adults, very serious people and no one bullied me just because no one was really interested in spending time on that. At this point I've got very clear goal for myself. I just wasn't real sure how I could get to this. I was able to earn master's degree and work afterwards. It was hard for me but I did it. Simple trip to the University by bus was a big deal for me. Because I needed to go to the bus stop, stay there waiting for the bus and then try to get the little place in the overcrowded bus. Often I preferred just walk home when no one was on my way and I could walk at my speed. I was getting very tired by the time I get home but at least I was only tired physically not mentally too. Every little thing for me always was a mini-task of optimization. I needed to think about things before I do it, about things you don't even know; like for example climbing the stairs, doing the dishes, writing notes. Writing something down (my handwriting is terrible and writing by hand is really difficult for me).
I was once again clumsy and bungler and very unpopular. But who cares? I was able to graduate and just live. Like a sleepwalker or something. My fatigue, my overall physical conditions were killing me then. But I kept going I didn’t know then that everything would pay back at the end and was like a train on the rails – you keep going just because they are there.

So the next chapter

From the very childhood I was.............different. I wasn't able to do bicycle, play ball like all children do. Well, I did it somehow but so terribly bad that children in the neighborhood didn't want me in the game. And as a result almost always I was alone and I couldn't really say that to my parents because I was very ashamed. From the very beginning of our lives we usually taught be tough and strong and be able to protect ourselves somehow. That was something I physically couldn't do. But the thing was that I didn't know all it. I really thought that I was like everybody else, well, should have been anyway and so I ate myself up (yes it wasn't a reflection or something it was exactly eating up) for being clumsy and bungler. It was terrible.
I was bullied for that by everybody (at least by everybody who wasn't lazy enough to say bad words and do some violent things to me). I survived the childhood somehow just to become bullied teen. I really hated my schooldays. Just to earn quiet time I volunteered to be a person who's ideas were stolen for cheating purposes.
And again I felt clumsy and bungler and never good enough for this society. I was weak kid so I couldn't be any protection for myself. Neither words nor any strong actions could've come from me. So I was an easiest target you can imagine for any kind of bully.
Bad thing happened to my memory here. Bad because I don't want to remember this stuff but I do, I remember every little thing. I remember words, remember those eggs thrown to my schoolbag.............
I was a kid, just a kid so every little thing was huge for me. Every little thing was like a real tragedy for me. Sometimes they were becoming real violent and I was a “training punching bag” but because I didn't punch back – they let me go. I always wanted everybody not see me at all. Like I was invisible or something.
But there was some good in all this: I wasn't likable kid and always hided from people so I didn't have a choice but keep learning stuff. That's why I could do what I did later.

Hello Blogger Community!

I'm really a newbie here so I'm just browsing around curiously.
So please be patient with me here :)

I really want to tell you a little story about my life.

My life

Sometimes I feel an urge to pour out of myself and lay down to the paper some words about something. Today is that day again so please give me some benefit of kindness :) Today I feel the urge to write down about my humble life.

At this exact point in my life I have everything I ever dreamed of. I have the best husband ever and he is really everything to me. Literally he is my mother-father-brother-friend and Husband.
I'm able to travel places I never could even imagine. I do what I really love at work and I'm surrounded with very nice people. And things which are making my life nicer and easier at the level where my life becoming real joy. And at last but not least I live in best place on Earth – Alaska. It's just perfect for me, it has all four seasons: gorgeous fall, spectacular winter, beautiful and explosion like spring, great summer. And you know the saying: the better thing then mountains is more mountains. And we do have it up here.
I just love it here! Basically I am living my dream. I'm so very happy right now!

How I've got to this point? Well, it was a long journey...