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

Its not about painting what the world see , its about painting how you see the world.

How DO I see the world? I've thought about it today after i wrote this. 

I think when you have anything wrong with you whether it be vision loss, sickness, or just obstacles you have a choice. The choice is whether to put on the dark glasses and only see the dark and sad things going on around you, or to put on the rose colored glasses and let the world brighten up.


I choose to put on the rose colored glasses a long time ago. To go with what was happening, to laugh with my self and let others know it was o.k..


I took the same path with my art going to paint what i saw instead of trying to replicate things i couldn't. I saw so many artists either trying to reproduce nature exactly on canvas or trying too hard to abstract it.I didn't want to do either I wanted to paint how i saw the world. So I put on my rose colored glasses and away I went. 


Looking back however i think I made a mistake.


I abandoned color because I was losing my color vision. So I started painting the light and shadow series double negative. And although I will never stop I have come to think about how I do still see color. 

The colors I see still are the brightest most vibrant colors. Easily distinguishable. And so what if i think something is a different color then it is,.. maybe i should paint it that way. I should try bright and vibrant and if it isn't maybe i should show the muted blur that I see as well. 


We shouldn't pick and choose what we see through whatever shades we choose to put on in life. Even if your horizons are blurring and fading it doesn't mean you cant broaden them a little. :)

feeling blind n girly

There are certain things Ill miss trying to do when i lose more of my sight,.
its doing my nails.


For my friends its seriously the girliest thing I do  but i really love it.


For sometime I couldn't really grow them, that and i just figured since my eyes were so bad why really try. Over the last year and with the inspiration of a friend Monika I started to really like doing them more. I would come home and sit and relax, paint my nails or file them and relax. When I came in to work my friend Lucy would notice them and always compliment them, it meant so much to even have them noticed.


I'm not going to lie I've had to get so close to them i have indeed had nail polish on my nose, but i didn't care. I found that if i took my time with a ton of light and patience i could paint them myself and i was so excited!


For other woman its easy to do your nails but for me it is a huge deal. 


I started collecting colors, then it was glitter and top coats and nail art! I found I like the glitter more because i can see the nails shine.My friends started to see how much this taken for granted ability by others had made me feel so much better. 

some of my nail collection

When i lost my box of nail polish in the move one of my best friends Brie even sent me a care package with nail polish.


I was talking to my husband  the day i found out I also had RP and I asked him," would you learn to paint my nails so when my sight is gone  i can still have pretty nails?" He said of course.

I may not be able to really see my hair color any more, or paint the best nails, but I will continue to try to stay girly going blind or not.

A colorful rollercoast ( why I say not to treatments, trials, and cures)

I see a lot of my visually impaired peers post about all of the research in the different fields for vision correction and "cures". I am excited for these advances however I myself don't read about them anymore, nor do i jump at a phone or computer to be in one. I don't want to upset or offend anyone but there is a reason why i feel that way, it may change in the future but even with the news of me having RP as well i still feel strongly this way.

At one time i jumped, to the computer, searched, sent emails, followed posts and dreamed. I still felt this up until about 2005.

One morning I went about my "Mom" duties and once my infant daughter had gone to take her nap I was on the computer. I was feeling frustrated as a single mother at the time and was looking for anything. I ached to drive a car to get around with my daughter i felt maybe i could give her more if i had some correction of vision. I began to search online and found a doctor(i will not mention his name) who was doing research and testing on a drug to aid in return of some vision for those with macular degeneration. With tears in my eye i read through all the stories of success and sent him my e-mail.I told no one, if dissapointed i wanted to keep that to myself.

The next morning i awoke , sat down with my coffee and found a return email.  The doctor himself responded to my email and invited me to his program. The range of emotion i felt was indescribable.I immediately called my mother and the rest of my family and friends.Over the next few months I planned and anticipated the treatment and what it could bring til the day came to drive  across the country to my appointments.

I went through screening tests, more vision tests and then started my treatment. I sat with eyes closed for about 2 hours after my first dose, once the medication had enough time to sit I was allowed to open my eyes.

And for the first time since I can remember i saw colors. True full bright colors.

I went to a art museum and had an experience that i now try not to remember.I read some of the signs easier and I saw colors in paintings I had not known were there. The second museum  I looked at paintings By Chuck Close and Georgia O'Keef in a whole new way. I cried everytime it was overwhelming.

These experiences continued over the next few days then i got to go home with my new medication. 

As I walked through my door i turned to look at my artwork ( the study in humanity series;color on glass) and I absolutely hated each and every piece. This is hard to explain but i painted them the way I thought color was, being faced with the reality of how differently i was seeing the world it knocked me back. It was at this point i stopped painting color pieces, I didn't want to try to fake color i knew i couldn't see. 

Over the next few months i laid down with my eyes closed for 8-10 hours a night in hopes the treatment would work.

I learned that year nothing lasts forever. 

The doctor would not  send more medication, i had to get back to the other side of the country and didn't have any means this time. He said he would help me get there through an organization he knew, he never filled out his half of the paperwork. 

He stopped returning calls, emails, and my vision went back to the way it was.

Research findings,.. no long term effects.

The emotional roller coaster of having something and see what you cant and having it go back  was the hardest experience of my life. For some people getting to see those things even for a short time would be wonderful, but i cant recreate the things i saw and that was even a very tiny aspect of my vision loss. 

I learned what i think was the most wonderful lesson from this, I WAS happy the way God had made me. I didn't want to hide my impairment from people anymore, and I didn't want to fake seeing things that i knew i really cuoldn't. I accepted myself  in a way I never had. 

I started painting the black and white series right after this. I wanted to just show everyone how I saw. It has taken me years to come out proud with my artwork and my impairments but if I hadn't gone and had that life changing "treatment" I don't know where I would be. 

From that moment it became my goal to teach people about being legally blind through my art. I will probably never jump at a stem cell research, or and experimental cure. I will pass. I will see how things go and continue on how I am happy, teaching my daughter its ok to be this way. To have a husband who can care less that I cant drive and joke about buying me a mini cooper so i can drive in parking lots of back roads. To have friends who tell me I somehow inspire them, that they cant imagine not being my friend and that they commend how strong I am, Having family that loves me and supports me living the way I think I need to be to reach out and touch people.

I'll leave the cures to other people who truly want, need and pray for them, and for now I am blessed to be Visually Impaired.

It's A Curve Ball,.. A large Curve Ball,..

I went to the doctor, they said the last visit i had was in 2002. Apparently my new doctor here ( a retinal specialist specializing in research for retinal diseases ) had been in contact with my doctor in Illinois to give me a firm final diagnosis.  After testing and another call to the other doctor they figured out the cases,..'s.

I've done a lot of looking back in the short time since Friday morning. I remember telling them about how hard it was to see at night, how my peripheral was bothering me too, and how it seemed i had lost more central vision even after my Stargardts should have halted.  They said it could be cone rod, no one gave me a firm diagnosis but they knew i had Stargardts become of the yellow spot presentation as well as other tests.I was told to wear my dark plum glasses 24-7 just in case, seemed they weren't sure.

My mentor Judy had a combination, the first i had ever heard. She had Stargardt's and cone rod dystrophy. Until that point i didn't know you could have both, not to mention two different eye diseases.Even with those both and her losing much sight she made the most beautiful paintings.


I think learning I have both retinal pigmentosa and Stargardt's took me by surprise only because i had become comfortable with how i was and how I saw the world. I thought it wouldn't change, that i was where i would stay. n other ways i felt relieved to have answers to what i knew was going on with my eyes.


I did hope i could find others who maybe had combinations or even the same combination. So far nothing but one person in a support group arguing the impossibilities of my condition. I have learned nothing is impossible.


So as I write here in this blog and go on my journey here, I have been thrown a curve ball, but im not out of the game. I feel inside me its even mroe important to continue painting and my artwork. I may not have some common visual impairment , but my art has never been common either.  I hope i find others like me that i can talk to I think I would feel less alone in that respect. I am lucky, blessed even for my family and friends. They are so supportive through everything and I am glad they are there to listen. I can not control how my remaining sight will go in the future but i can control my path and I will keep painting and writing no matter what.


I don't need a cure i have family.

things have gotten brighter

gorgeous view from where we are 

when they say the sun is brighter here, they aren't joking :) My family and I have been here for about 12 days now and it is such a beautiful state. i haven't really found a place to set up my art studio yet but have had many ideas and inspirations here.

i think hummingbirds are my new favorite bird, and my have to be painted

one of my favorite things here has been sitting outside and eating fresh grapefruit while i watch the hummingbirds come to the feeder. im not sure what they look like but i can see the silloquettes of their tiny little bodies and furiously flapping wings. One that comes in the morning always makes me giggle, they are so loud when they drink an they make the most adorable noises when they do. 

I have had so much fun picking grapefruits from the tree. its hard to see them thru the green and looking up at the sky but i love it. I have to be a bit more careful however i already have a good bump on my head from a lil depth perception incident .:)

its a jopshua tree but i call it a fuzzy tree :)

It takes some getting used to with the change of scenery but its a good change. I love the trees and the view out here. I even got to go to a place called Slide Rock and go sliding down through freezing cold water on the red rocks.


Next step is to find all my new resources, doctor, new sunglasses,  and more.I do have a feeling that my art will change a bit but for the better.

best regards from sunny Arizona :)

facing myself in a new way

amidst the move and work on my new gallery series i was contacted by a student/artist in England doing his thesis . He wanted to take on a sculpture project showcasing blind artists and photographers. while stumbling upon me and my art he messaged me and asked how id feel to allow him to use my face and image of for his art project. After talking back and forth a bit and getting more information as well as insight into his project i was really touched by the fact this sighted artist and student would want to help get the message of visually impaired visual artists out to the world in his own unique way. 


After really thinking ( I'm not the biggest fan of pictures of my self, id rather hid behind the canvas :) ) i submitted to him my black and white head shot with a description of why i took this photo.

i had taken this picture because i wanted it to represent how i create my art. the pose is me as i do quite often starring at photography. Either that Ive taken  or even photos of my sketchbook online, or watching dance videos. I try watching things and find the most beautiful thing in it that i feel i can portray through my blindish-ness. I wanted a photo of me with out make-up, not even hair done. This is just as i am wen i create my art. It is a photo of me plain and as honest as the work i try to put on the canvas.

he loved the photo and created a 3d sculpture of it. here is his sculpture,

i thought it was so amazing to see the contour and depth i cant normally and what an interesting concept. 


after a few days he wrote back he wanted more information on  how i see my face or how i think i look. well, umm , this isn't the easiest thing for me to answer. in fact I'm not sure anyone has ever asked me that very question. i tried to answer ti a few times, but got very emotional each time. i understand that i don't see my self or face the way others do, and I'm quite hard on myself as well. after a few days  i responded,..

AS I SIT AND LOOK AT MY FACE I SEE MYSELF LIKE NO OTHER PERSON CAN. IN
THE CENTER OF MY VISION I LOOK STRAIGHT AHEAD AND I SEE THE DANCE AND
PLAY OF FLASHING TWINKLING LIGHTS. THE AREAS AROUND IT BLUR AND I SEE
THE PALE SKIN AROUND AND MY BRIGHT RED HAIR FRAMING IT. AS I GET
CLOSER I SEE MY LARGE ROUND EYES BUT CANT TELL MUCH WHAT COLOR MY EYES
ARE. I AM TOLD THEY ARE BROWN WITH GREEN, I THINK THAT SOUNDS VERY
PRETTY. THE REST OF MY FACE BLENDS TOGETHER SO MUCH I SEE LITTLE
CONTOUR. MY LACK OF DEPTH PERCEPTION MAKES IT HARD TO SEE SO I SEE
WITH MY FINGERTIPS. WITH MY FINGERS I KNOW MY CHEEKS ARE HIGH  AND MY
NOSE PROMINENT, I FEEL HOW DEEP SET MY EYES ARE AND HOW TALL MY
FOREHEAD.ON MY NOSE I FEEL THE STUD FROM MY LITTLE DIAMOND. IN THE
LIGHT OF SOME ROOMS I LOSE MY OWN FACE, SHADOWS CONSUME AND LIGHT
WARPS IT. ONLY THROUGH LARGE PHOTOS AND WHAT I HEAR CAN I LOOK TO SEE
WHAT IS PAST MY BLURS AND TWINKLES. BUT EVEN IF I CANT SEE DETAILS OF
TONES, I KNOW THAT I STILL SEE A MOTHER, AND ARTIST, A WIFE AND A
FRIEND.

its strange  for as many times as I've answered people on how i see the world, it took one person to make me think about how i see myself, and my face. i finally understand more why so many artists have done self portraits, maybe it was so THEY could get more insight into how they looked to the world. 

Its amazing how art teaches us so much.

the ballerina and i

 The Ballerina and I (prologue to the painting "L'ombre ballerinas" )



As i sit and watch  the lights wash out the room to mute it to a crisp golden haze. Everything looks absolutely  wonderful.  Those lights now dim and everything goes into a light golden grey fog .

Somewhere in the center of the stage a blue maybe grey light appears where i guess the black stage isto be, but then the dancer appears.  Emerging on it appearing as if she is floating on nothing at all, almost angelic.

The colors of the stage lights dance around the lone figure .They run together playfully like the dancer does . i catch some rare glances of red, perhaps blue and green?The lights are so bright its hard to tell they wash out the ballerina at times but it doesn't take away from the dance.

She is moving so gracefully,i wish i knew how her arms were making those movements it all seems so fluid and quick as she glides around the stage. All at once from no were it seems she leaps through the muted color fog and back onto her invisible floor.

 Everyone around me is sitting perfectly still so engaged watching this delicate  black shadow dancer. I flip to the Program i have in the dark and go to the pictures of the cast,...
ah yes in order of appearance. I get out a magnifier and look at her picture now i can see her her as she dances!

At times I struggle to follow her as she moves so i just fix my eyes and just watch the movement out of my peripheral. sometimes i just listen to the music.The experience of her performance is just as touching.

I look up to follow the dance and the music is faster and she is now twirling at a  hurried pace. colors flash! my eyes flash to, as my eyes take a moment to acclimate and readjust i hear the crowd start to clap. And i do too. What an Amazing performance!

Soon she begins dancing again and more lights come up. A 6 more ballerinas appear from the side of the stage already leaping and dancing,,...

in the beginning,..

protector of the eisel!

lil sock buddys ready to get going!

oh yes amazon your deliveries make me smile!

big wall for a big painting

my silly attempt at taping lol at least i tried

Getting everything together, things falling into place I've loved everything from  to  washing the wall, to  reorganizing the room ,to starting vellum sketches, to waiting for ups. i thought id share some photos this blog that made me smile 

 

 

 

i think this is perfect , i though about how when i have to get close to this canvas i cant hunch over it i can just stand close . i looked into some of the magnifiers on the ls&s site I've always wanted and not bought yet.  they were things i had always needed but i always had this bad habit of  if i needed it id make an excuse that someone else needed some thing more. and yes i put visual aid at the bottom as horrible as it sounds. well I'm not doing that anymore my wonderful husband is putting a stop to that so I'm going to make sure i have proper  aids for this project.

on an added note I'm hoping to  tell the story of me and my journey to me and my guide dog as i have started the ball rolling with the paperwork for the guide dog process. there is a lot involved and much going on so time will see when that will happen but what a huge step for me :)

the exquisitly LARGE touch of braille?

so as i sit in my "home" studio and work on my sketching process i am working on the new process or putting braille onto the new piece. i have done the smaller braille pieces and i really enjoyed how much even the sighted viewers were touche by them.  so now i feel it is important to incorporate it into this canvas so the words i feel are important or descriptions or felt throughout the scene

when you see other modern art those artist have words written everywhere, why cant i have braille in mine? its serving for me many additional purposes for more then just visual but also to communicate to those who cant see the whole of the piece.

the process of doing this i have many ideas, and there is already trial and error in thought but  I'm determined to do it and make this even more accessible.

I've had a co-worker who found out about my work ask for a picture but its a little to early just yet. I'm still sketching and applying layers in process. At the moment i have laid out my work space on my wall where the canvas will be with the drafting tape and have the vellum paper and sketches, not all but some. i have the idea for this first piece but not revealing till I'm far enough along here for the first video blog and or photos. I'll be inviting photographers in to follow the process this time.  ill be using models again and documenting there sessions as well. I will also be inviting those who are visually impaired locally to come and experience the art closer to the end of the process to get their  response and reaction  to the piece.

i couldn't be happier with this whole series of reinventing shadows i feel its a wonderful freeing experience not just for me but hopefully for all who come to see it and watch as i create it.

thank you to everyone who is following this is means so much!

Beginning "Re-inventing Shadows"

It's been about the last 4 months of a process and starring at the walls of my work to figure out what I need to do, where to go. I've known for about the past 2 years, maybe honestly more, that the straight black and white was the beginning of what i wanted to express and show but was a stepping stone.

And what was great was the moment when I knew I couldn't do just that again.

I had to push my self past it and figure out what was next what I wanted when someone came to a show. It's not about selling a million pieces, its about your interaction, your feeling. You, and I mean those of you blind, visually impaired and sighted, being able to have common ground on one singular canvas feeling and seeing my piece from my view and yours, being about to touch and experience it.  And I knew it needed to be me going back to recycling and mulch-media. I have to be able to capture  several textural elements. Lastly, I knew I had to go to the place I told my friends I always knew I had to because of my lack of sight... Bigger.

I think being able to combine some of the elements together and create this impact I'm looking for and this experience for those with low vision excites me the most. My take will be different then the norm and I'm going to enjoy taking my time to create it.

I don't like to be seen, I like my work to be seen and felt, and I think I want to be more vulnerable and push myself. When I post pics for my Facebook or head shots they are of no make-up, my hair is not done, and its usually in black in white like my work. My photos are me honest and plain. I started this blog to write my memories, my experiences, and to connect and put my self out there for people to understand the work more. With that said I think the next step with the new work I will be doing some 5-10 minute video blogs of me talking about the work, and working, painting, building, and creating. nothing staged just be and the art. I'm not trying to copying anything but my own view of the world, the way god has blessed me with with Stargardts. And I say blessed me because I feel that the art I create with my eye disease may not be as detailed as a fully sighted person, but its a experience and I think it's still beautiful in its own way.

God didn't take away vision, but perhaps gave me a new perspective. I just want to share it with the world.

isolation

i think being as i am and a artist i have always surrounded my self with people and friends. im quite social and i love being that friend that says something silly and outrageous to make you laugh when your having a bad day. I've kept myself around people  that understand me to always  help me read things, or to know how i try to be overly independent with my low vision.  but on the other side of that coin ive realized that when it comes to creating i need utter and complete isolation, and i find it comforting.

unless im on my final state of a piece or working on a casting i find i get very self conscoius. Even in front of my own husband as if im in this very volunerable state  and i fear any comments til im done. Maybe its because my whole process is diffrent, i start in as much detail as i can ever possibly see then i begin the process of taking over my image in shadow. it never looks the way it started. and sure i could show the detailed  sketches i make but it is only me  faking the shadng that i cant see, and for me it wouldnt be real.

ive looked at me pieces over these past 6 months or so and said several times, i need more from this. Every artist get to some point when they dont want to stop  but begin to feel stale at the same time. So here i am workign on creating my own isolated space in this chaotic  apartment to go back to my basics and begin putting together all the tools and ingrediants i need for the new faze of my work. It feels amazing to finally look at it and have an answer to were i wanted it to go.

There is something wonderful about sitting in a quiet house alone and sketching and working on ideas and getting them worng,

every time this happens i get closer to where it needs to be. here i need to bring my ideas and works together to create one unified idea and set of works  and the beginning of the process is overwhelming and wonderful.

Aphrodite sketch