"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.