blind meets mountain

its been a fun filled couple weeks here, i think I'm finally starting to get the hang of being in phoenix

(rachel dora ann) some festive flowers from our family summer birthday party

i have started hiking too, its such a crazy challange! i cant see at night but i find that i love night hiking because of the breeze, the view and the easiness on my eyes.

hard to see but from high up on a peak here

even going during the day, no matter how much i struggle to feel for the changes in the ground i have been truly loving it!

beautiful cactus! they really grow on you!

great daytime view, and a rare glimpse at so many clouds

I had some great advice form other vi/blind hikers about getting a trek pole. so i have been looking into them and  cant wait to get one! they will help me see and feel independent  in those  place i cant sweep a cane. I also got a great phone app called MapMyFitness. It tracks the route of where i go, the elevation, and best of all she talks to me and tells me when i hit certain milestones like miles and such!

What a wonderful feeling to do something so challenging and so much fun right here where i live. I cant wait to get some trek poles! Then there's no stopping me :)

there is strength in disability

strength

This week at my orientation for vocational rehab I took part in a group.There was 5 of us total, all of us with differing degrees of visual impairment. Sadly I was the worst of the group.

I sat there and listened to the presentation and listened to everyones reactions and questions. They were there to find help to make working easier  or to continue to work period  dispite the impairments. Some where there for independence and confidence. To learn to take on life in there own way.

Then something occured to me,..

I saw more will power, and eagerness to work and courage then I see in alot of sighted people.  

A business man, a mother, a grandmother, a veteran,..

None of these people have given up! they are either losing more sight, have lost a large amount or even have a combination of vision loss and other health conditions. All this said none of these people were going to back down to there conditions..



So many people look at hiring those with disability's like vision loss and think they are less of an employee as someone else. I know there are laws protecting us, but if you have ever had a disability and tried to find work you would know that there are many ways in which a company can deny you for employment and make it look like other reasons.

But what they don't know is that everyone i know of with a "disability" and those i have worked with usually work harder then those without. 


Why? 


because we dont take working for granted and we are happy to have a job. Most work harder and take on the job as a challenge.Who wouldnt want those kind of employees!

adapting with a handicap 

I think of people who dont want to work, who dont try, or those who have given up and dont have any hurdles in life to climb. It makes me realize those with those hurdles are so strong, they take on so much and keep going, they have strong shoulders.


there is so much strength in disability, not just in wanting to continue working, but having the courage to keep going and accept what they are going through. You may see someone in a wheel chair or with a cane, but what i see is someone who has come so far and will continue to no matter what, who will never take life for granted.

stupid fingers (the art of trying to learn braille)

I will be learning more braille soon to make it easier on me, and you know what?


I have stupid fingers. 


you know when you try to do something that looks so absolutely easy when  anyone does it .but when you do, you can't figure it out? like your brain doesn't connect to your fingers? well that's me, don't know why but i have learned some braille a little before and that's what happened,..

stupid fingers.

It really took some work and I definatly could not figure out the "shorthand" very well. its like i have a stubborn block to all this. I know i cant see small print, or even regular print . I also know that I can get things in large print but I still lose words. SO why wouldnt I be excited to fully understand  braille? because for some one who is losing sight , i am sight orientated.  Ive gotten to used to squinting, and magnifyers and blowing things up I want to see what im doing. the process of telling my brain to feel and not squint is not an easy concept. 

And i for one am in love with braille and its beauty,  Ive used t in several paintings and still continue to. But its like  I am someone who understands some Spanish, but id like to speak it fluently.

 Id like to "speak" braille fluently.


I am sure im not alone. people with visual impairments get very used to seeing life the way they see but navagationg through it even still.  switching to feeling and not over working my poor degerating eyes is a hard switch.

I went to the center for the blind and brought this up to the girl i met in the office who aslo was visually impaired. she too to my suprise said she had the hardest time when she was switching form large print to audio books. In time , she said, the mind makes that switch and it is so much more fun to listen to.

Hmmm maybe I just like the way my head narrates and I need to get used to hearing someone else tell the story. The same could work for braille,.


I was reading my mail and thought about how i did that, and i figured out HOW in fact i read. I guess the shapes of the words so much that my mind really takes over and guesses , even the shapes of sentences . this is probably the biggest problem, trying to shut of my minds guessing up.

My class starts in a few weeks, so I will continue trying to flip that switch and turn off my stupid fingers :) and learn to be fluent at it.


se hablo braille ?

"why God" Part 3 searching for words in an old book

its strange that almost 20 years later i find myself coping with learning of a diagnosis. It makes me look back at the path that took me to this point with myself and my faith. I think if i hadn't gone through this once before it may be harder now. 

This recount of my path tells about how i found my way through high school, and the journey i began.

I had gone through so much in the short time i had learned I had Stargardt's in high school and the reaction of my family. In so many ways i felt a release of stress. It's that relief in finally having an answer .

I went to school however feeling ashamed. There was no calming the ridicule or the ignorant reactions i faced the remaining sophomore year.I had a geology teacher openly ridicule my vision and a P.E. department head force me to finish my drivers ed test. The amount of times some fellow student who thought he was funny asked me "how many fingers am I holding up?" with fast moving fingers in my face was more then you could imagine. Not even some of my closest friends could refrain from jokes about me being"blind". And all i could do is sit and smile and laugh it off. And the inevitable happened ; I became a complete clown for my friends to hide how depressed and hurt i was feeling.

My extreme outgoing nature helped me get through the rest of that year. I threw my self into as many activities i could including, swimming, theater, tech and any other club i could do. In everything I hid how much i couldn't see and asked questions at every chance. Sometimes I just felt so self conscious to ask and i never finished the assignment or the activity. I sort of hid inside myself and my goofy exterior because I really didn't have anyone I felt understood  what I was going through. I had one student at my school with a visual impairment and I saw him maybe once a month. My self defense in Mr Antus's class was the first time I defended myself and my vision loss.

By the grace of my theater friends I think i survived sophomore year. Junior year was easier, I just stayed hidden in myself and threw myself into plays.It was during this year I realized I had to stop swimming. My eyes were growing more sensitive to not just the florescent lights all day long in school but the chlorine. During one meet I realized What they meant by me losing depth perception when I was slowing down to find the end of the pool. Once I even did my turn in the water probably about 5 feet before the end. No matter how much I loved it regular swim team was not for me anymore. 

By senoir year I had finished a summer camp at Northern Illinois and felt I had really come out of my skin. No one said anything about my vision they just liked how I made them laugh. I somehow found my voice and was in our senoir musical, and ffrom then on I sort of lost my focus. Afriend of mine asked me to come to the bible study group. It helped so much to sit and read with the group and give my opinion on everything.I had mno real religious affliatino but i just wanted to find answers.By the end of the year I was the co-leader of the group.

As leaving high school came, so did my need to pursue  answers through religion.I sought anything that would help me find balance and calm my fears.I started going more towards Buddhism.I found meditation calming and took on the belief of not questioning what you are given in life but just to live.

As I set out I realized the college world wasn't going to be for me. The things I tried to pursue I was met with huge blocks. Feeling alone I gave up and decided to work, and work as much as I could. 


I would soon learn that My path would change again, and so would my faith .

positivly positive

A friend asked me a question,.


How can you stay so positive?


my initial response,


because I have to.

I think I have learned to cope in the best way possible.I am not saying I don't get sad or depressed here and there but its important to accept that it will get  you down, its how you pick yourself up and carry through that counts. 

Grandma said the best thing today and i think this is how to best describe me and faith" I dont wear my religion on my sleeve i keep it in my heart." I found my faith and spirituality and its part of how i manage to be so strong when its so hard. I truelly believe that it is Gods will and I need to trust in him. I feel how ever hard it gets that  I will be carried through the roughest of times. Most importantly I believe that I have had this obsticle because  I can help people through my art and my experience.Helping others selflessly makes it worth it. someone said once "Be who God meant you to be and you'll set the world on fire", and I do believe that.

Now not everyone has strong faith or even has concrete beliefs and that's fine. Family is the second thing that makes me smile everyday. When I feel down and I sit and think about it all I remember that even though its happening to me it happening to them too, and they accept me for who I am. We laugh through things whenever possible. When I got my little concussion last week and ran into the glass door, I was the first person to laugh. and so did my family who witnessed it. they made sure I was ok  and we giggled about it some more. They are my guides and my eyes to the world.  they do not feel im a burden even if I think I am.They keep me positive and are willing to fight even when i don't think I can, they support my artwork and everything I do and I know when the world gets a little darker for me they will always try to brighten it up.



I had a friend give me a book a long time agao called" dont sweat the mall stuff". It talked about how little things in the long run dont matter . I read through it and adopted a philosophy that it is perfectly ok to cry about something that upsets, scares, or hurts you, but only for that moment. YOU cant let those fears overtake your life you can only cry about it to relieve that stress and then let it go. I spent too many years after high school crying over what was to come, and not enjoying the vision I HAD. Days go by quickly, don't waste them worrying about the future or you will lose the past.

I think that brings me to the best advice I could give her, talk about it and cry only when you need to.Accept that your afraid but don't let it overrun you. every once in a while when accepting harsh disabilities or things like it in life we get  too bottled up. We are kind of like a tea pot, we heat up slowly with emotion when we don't face them and at some point you have to let it out and scream! Its healthy to let it out once and awhile. It can get frustrating especially with anything happening to you that is degenerative. let out your frustration find some way to do it and then move on.youll feel better when you do and will have a clear head to find a way to better handle  everything. If you find someone to talk to whenever you really need it you can keep it form happening. find a friend with a simalar issue or someone who has given you the support you need and bend their ear. relieve it as it happens instead of exploding whenever possible.


No one can completely predict the future  , we know what the doctors say will happen. What they can't control is hope. Keep hope you will find a way, keep hope maybe that they will find a remedy or a cure, keep hope that you will be okay. 
No one is perfect and strong , 
we all go through it diffrently 
but we can get through it, 
and do it with a smile.

And I always remember , I'm not alone.

baby your a firework

Its funny how many thoughts and emotions I've gone through in the weeks since i learned I also have RP. Some people have asked me questions which i really like, and others have said nothing. I think maybe they feel sorry for me and I wish they wouldn't. Asking questions is never felt invasive to me, it has always comforted me , it shows me that person wants to understand and know what I am going through. Maybe it is different for others with vision loss.


The strangest and hardest thing to go through with vision loss no matter how strong you are is the realization that something you had seen before is now different. With anything degenerative  you can see something in your way and then months later not be able to make it out at all. Shapes of words may even get harder to "fake".

For the Fourth of July I went with my family to the family cabin . It was the most perfect get away after everything. We had a blast with the kids and just doing things with the family like cooking took my mind off of everything, it was wonderful. On the fourth we got up and got ready to go out and see the fireworks. I hadn't seen any since we all went to Disneyland in November so i was excited.

We had fun sitting and waiting and people watching.  Finally the time came for the fireworks and I turned my head as I heard the first "boom" to see the colorful burst in the sky.

And I instantly had to close my eyes. My eyes burned so much! The fireworks were so bright and with my night blindness getting worse and my light sensitivity I couldn't watch the fireworks. I sat and cried quietly for a minute til I regained my composure. My daughter kept telling me about them so I asked her to tell me what they looked like, the colors, and which ones were her favorite.


With my eyes closed I listened to what my husband and daughter were saying and just imagined what they looked like inside my head. 

I watched the fireworks through their eyes. 

Somehow this made me less sad and more happy.I opened my eyes a few times, head turned away from the display and just watched my husband and held my daughter.I think it was only so hard because this realization came in public and with something I was excited that I could always go and see, maybe not anymore.

I know I will go through more of these moments and its not what I'm going through but how i choose to go through it. maybe if i focus more on how my daughter sees it or memory's of things it wont be so bad.

"mommy I dont want you to go blind"

my beautiful daughter

8 words that broke my heart.
 
We sat in the room having girl time, watching t.v. and doing nails.We started watching master chef, one of my favorite shows. One of the contestants Christina is completely blind. Madie asked about her and I told her she was a great cook and got help from her assistant to gather ingredients and read things. Gordon Ramsey surprised them with photos and letters from home and Christina's had to be read to her. It made me cry because it was so sweet they read her letter to her.she still got to hear how proud her husband was of her accomplishments  even with her limitations. Then Madie started crying. I thought it was from how sweet the moment was on t.v. then she jumped in my lap sobbing,

 " mommy I don't want you to go blind!"


Its not that I had avoided this conversation since my doctor's appointment but I did. I kept hoping that she didn't really understand and she could remain being a happy little almost 8 year old girl. 


I held her tight and told her its going to be okay, and if its God will then we need to just trust in God. 


"mommy are you scared?"


"yes I am"


"why are you losing more vision?" she asked. So I began explaining in as many not scary words as I could about how I have already lost my central vision with Stargardt's and the Retinitis Pigmentation  gives you tunnel vision, but the end of my tunnel is already gone. I tried to tell her maybe I wont lose all my peripheral, and maybe they will find a cure. 


I realized just because I was coming to terms and accepting my further vision lose SHE was not. She just wanted her mommy to see better, even with the impairments she had . She didn't understand it being Gods will she wanted nothing bad to happen to her mom. 

I felt so selfish, I hadn't thought about it because she seems so blissfully ignorant to the severity of it all.As parents we tend to forget a few things: 1 our kids are smarter then we think, and 2 what we go through so do they.


She told me she wants to live with me forever and help em take care of dad, and to take care of me. I thought about how scary this was for her .

I need to be even stronger for her. 


Madie its going to be okay, Love Mom