"why god?" part 2,.. Angels will always be there for you

I cant drive, how will i be independant??

The next step was getting a vision iteneret and a mobility teacher. I was wasn't sure how that would go but they assured me it would help me to "adjust". Well at this point i had somehow lived with this disability and loss for now 15yrs, what exactly was i adjusting too? To be quite honest it became more of how to teach others to adjust to me.

High school didn't go very well for me in this way,  not all school books got enlarged, i had teachers call me out and ridicule me in class, I watched all my friends start to drive and i was taking the bus.My school counselor even found someway to mess up my college applications, they went in late ,..too late, i had missed a class i ended up taking in summer school, and i had to leave the swim team.Swimming was my absolute favorite part of high school besides theatre. But the truth was, i had been having problems seeing the end of the pool, the depth, and i dint want anyone to know. Id count it out but that paired up with me growing a chlorine allergy was bad. My eyes still do not mix well with pools they've grown so sensitive that they swell and itch, non chlorine pools are best but not the same.It had gotten worse from freshman year and i couldn't fake it or hide it anymore.Not even goggles did it, in fact the feel of the goggles around my eye were so bad and was so sensitive i couldn't keep them on either. I left, they all thought i had made it up, i cried for weeks because my vision and poor eyes robbed me of another thing i loved and would never completely enjoy again.

Through all this I had joined the bible study my junior year. They were really nice and i ended up helping run the meetings. It was the way for me to ask the questions i had with my peers and not feel so alone.

I had never felt so touched as i did the first time i went to visit my great grandmother after i found out.

My mother and aunts were getting together for a sister reunion and i asked one of my friends to drive me to go visit her. She lives across the state in Iowa but i really wanted to see her and my aunt Betty. After he dropped me off we all sat and talked, we talked for awhile. It was then that my connection to her became even stronger. See when i was very little she lived very far away, we would send each other or trade when we saw each other stuffed animals. My great gramma lived in Arizona at the time and would send back Polaroids of our friends sitting on her bed.It was how i felt close to her even states away.She looked at me and pointed to her bookshelf. She had me get up and grab one of the many book about angels she had. We sat for hours talking about them, and how she believed we all had them, and that no mater what vision i lost my angels would always be there to protect and guide me. From this moment on i started collecting angles. The day i lost my most special angle i put a stuffed ty angel bear with her so she always had a piece of me no matter how far away she was.


The next few days with her that weekend were great as always. we played solitaire(she was the best solitaire player to ever exist) and watched lots of "touched by an angel". I laughed as her and my great aunt talked about how cute the Wendy's guy and the dunkin doughnuts guy were.I think my great grandmother was an incredibly strong woman, i didn't seem to see that she was very torn up about my eye disease diagnosis. The afternoon before leaving I will never forget.

My mother and my aunts came by the house, i was so excited i love all my aunts they are the perfect definition of strong smart and beautiful and that's no joke. That whole side of the family, those are woman who make history you know the type i mean.We had a great time we all joked and laughed and hung out and i was just so happy to get to see them. I never got to live close to my extended family, the seldom reunion was about it so this was a rare treat.After lunch my great gramma called everyone into her room. She asked me to sit down on her bed. I looked up at ^ of the stronger woman i would ever know and they look serious but were smiling. My great grandmother then proceeded to have everyone hold hands and pray for me.They formed a prayer circle and asked god to cure my vision, to heal my eyes.I tried very hard not to cry with my head bowed. I felt sad that my family was so upset, but touched in that moment.

I guess that for me God had a different plan that none of us realized. Maybe i still don't.

We parted from the circle and my great gramma held me very tight. All of us holding it together best we could giving each other big hugs.Before i left she called me back in. She had given me a bible but told me that this one was special. She gave me what was her personal bible, there were so many little messages in the sides i could barely read. She has the most wonderful and gorgeous handwriting. She told me that this bible would help with any question i had like it helped her.She then told me she had one more thing for me, she went into a box and gave me a small silver object with a jade type object on the front. She said she knew i would take good care of it, it was her make up compact from her junior prom, it was this etched silver-ish color with a green black and white decor on the front. She explained when she was a junior like me she wore it on her pink at her first real dance.I felt honored I hugged and thanked her and promised id take good care of it.

The compact sits in side my jewelry box waiting for my wedding this year, and her bible sits alongside.  I'm going to ask that it be used in the ceremony so my angel knows how much i still love her.

There are many things you learn when you start your path, were your faith is, how strong those you look up to really are, and whether or not you really want to know the answer to  "why god why me,..why am i meant to lose my vision is this my purpose?"

In loving memory of my angel, Rachel Lucille Sperry the woman i am named after and will never be forgotten.

"why god?" part 1

This is the question you ask in between gut wrenching periods of tears,

It was the day you found out or the day you really knew,

Everyone has gone through it, and you never forget that moment.

sophomore year high school swim team

My sophomore year of high school had started really well, i was on the swim team, was in theater mostly back stage but was excited to audition for the new play even for a small part.The play was called "The Canterville Ghost", a fun English pay about a ghost who never passed on and was attempting to haunt an English family's home.To my great excitement i was casted in my first play as one of the unwelcome house
geists. It was a funny role , full of physical comedy and comic relief.These were the roles i wanted, not the drama but that funny character who comes on for a brief moment but makes you laugh, laugh so much you remember that little part even when its over.

The only thing that could've topped this feeling was that i got accepted into drivers ed class at the beginning of the year.I couldn't wait to drive, i had picked out the car i wanted at the time and my father had begun bringing me out at night into the high school parking lot to practice. Unknown to me my father was trying to find me a Honda 750 motorcycle as my first vehicle, i wanted a Camero. All i needed was to pass the test and to go to the eye doctor.

Ugh the eye doctor, my whole life that person became the nemesis of my existence. I had been told i had everything wrong with me from lazy eye, to just plain lying. When they gave me glass i managed to always break or lose them, the migraines i got were worse then punishment for talking in class.Nevertheless with  a referral from my brothers girlfriend at the time we went to a new doctor to get my vision test for my permit .It took a while to get the results from my test but my mom informed me i would need to get more tests from a referral doctor.

there was a pit in my stomach.Why? Why did i need more tests, am i about to be a new doctors guinea pig again ??

I left from school one day and went with my mom to the new doctor.Everything seem fine til i heard him tell my mother i need a special test.She reassured me it was just to help me get some new glasses and it would be fine.My mother was always great at calming me down, she knew what to say to rationalize it enough that i stopped worrying.We came back a week later and i sat confused as he gave me some excuse for the test he was going to do. My mind quickly thought it was something straight out of the clockwork orange.It was a dye test, where i had to hold open my eyes one at a time, not blink and wait for photos of my eye to be taken. After this they injected my  eye with yellow dye, then more drops in my eyes and had me repeat  the test again. It was called a Fluorescein angiography. "Fluorescein angiography is a test which allows the blood vessels in the back of the eye to be photographed as a fluorescent dye is injected into the bloodstream via your hand or arm". I had more drops at the end and went home eyes burning behind wrap around dark shades, my mom had to lead me around.

Time passed and it was weeks after my test, i had been dong really well in my drivers ed class learning the "rules of the road", and it was opening night of my show."Rachel please don't read this but pass this to your nurse today."my mother handed me an envelope from the eye doctor. She gave me a brief explanation that it was what they needed and wed talk about it later after my show. I didn't really think about it much for the rest of the day. So much that i forgot to give it to the nurse,..

Opening night i was so excited, my mom was there and my brother, i remembered all my lines and was ready. I had just finished my costume , all my body makeup and my hair.I was bored, i didn't come on til the end of the first act, i thought maybe id  find something to do.I looked through my backpack to find something to pass the time, and there it was the envelope i forgot to drop off. I held it and wondered why it was so secret and felt curious and thought i'd read it.

I still wish i hadn't , that night wasn't the time for it, and i was not ready for what it contained. My whole life changed in a second, everything i thought id do, be , drive, everything. I swear i heard the world stop around me.I don't remember much of those first moments after the first line
"after testing we have found that patient has age related Stargardts Macular degeneration,.."
as i read i remember feeling like every bone in my body turned into jello, then i felt hands on me helping me back up off the floor. My eyes started to burn from all the Ben Nye makeup running in them.

A felt a friend take the letter from my hand,."oh my god!"
I never thought id stop crying, I had never been so lost in my life.

Stop the world ,....I wanna get off.

Nothing was more embarrassing then looking up with tear blurred eyes to a crowd off teenagers all looking at you as if you were some poor pathetic injured animal. At this point I'm pretty sure almost everyone back there had read the letter or told it via the telephone game till everyone knew.

this was about the time that the first stage of fear and pain started to fade and the numb shock stage set in. They were holding me up and i just stood there numb cold, and confused. I was a little cleared and took the letter back, reading it over now with fine tooth comb."vision is around 20/200 and would benefit from disability assistance ",."this is a degenerative disease"..."visually impaired/legally blind,.."would not benefit from glasses", and somewhere was a referral for a specialist in Stargardts.
I looked up at my friends and all i could say was" I'm going blind?"

The teacher came in and was quickly briefed my a new crowd of students apparently already up on the situation. She asked me if i was going on, told me to brush it off. What choice did i have i had family in the audience. A frantic array of hands came to me everyone trying to help get me back into character hair makeup, to group my senses back to go and perform. Somehow and i still don't know how i did it, i did, i lost myself in my character, i toppled out upside down , i did my Chevy Chase prop falls, i hit every joke, and i bowed at the curtain call. my greatest performance was not showing how scared and terrified i really was.

By the end of the night my mom knew i read it, my brother found out, and my father lost it. my numb stage lasted awhile, they didn't yell at me even when they heard me crying ,i know my mom heard , but she gave me space. She was the strongest I don't know how it was as a parent to be that Strong for me while she knew what was going on, but she did. I think about that as i parent my daughter, who got the letter this week that she is being referred to a eye doctor for failing the schools vision test. Could i be that strong for her?

I had brought the letter into school, the head of the P.E. department told me i was making it all up and made me finish my drivers ed class, I scored an A, the most pointless A i would ever get. Needless to say my mother had a phone conversation with that woman and she was the sweetest lady every time we spoke after.

It was around this time that the longest phase hit , the "why God" phase.We have all asked this, whom ever you pray or whatever your beliefs, when you get the news that your world is changing in any drastic way, you ask it, and you patiently wait for that answer.

form me, i took out the Bible my great grandmother had given me, i opened it. I was determined to read it from beginning to end in search of finding my answers,..

we all remember where we started to look for answers, I think sometimes remembering were we started makes us appreciate where we are going and where we have gotten to,....

seeing beauty through your hands

side  view of "the most perfect of chaos" while in final stages

The opening to "altered perception" focused on my newest series, my touchable art.It was something i dreamed about for 2 years now.I loved the black and white for its complete example of my light sensitivity, but i longed for anther way to make it more accessible to the blind and visually impaired.I for years had gone out of my way to create fake depth in creative way since i see none and texture both visual and touchable.

When talking with my father at a family gathering i said" what if i made it touchable?"I then started to explain my thought, if i could have a touchable face and then paint in black and white not only would sighted people understand more how i see but then through touching the canvas no matter you impairment you could see it with your hands?"i thought for sure he would give me that look he gives me when i say something he doesn't understand. To my surprise he  said "if you don't try it you'd be stupid". now if you have ever met my father you'd know that that statement is about as encouraging as he gets, so i went on with trying to form it out in my mind.

That Christmas my mother gave me art store gift cards to pursue my idea, i excitedly ran out to get the supplies.I bought anything i thought id need, and they sat in my art storage bin for over a year.

after  doing my first black box gallery show and painting a live model, i realized i wanted to go about it a different way i heard a lot of" i don't understand how you paint it, i like it but i don't get it", of course from sighted viewers. I prayed for someway to get to a better art level and of understanding thru it.Then it hit me to try the touchable art.



Bridgette casting in raw form

 My first willing model was Mrs Bridgette. She was my first brave caster when i had not a clue what i was doing really and she triggered me to want to keep going.

from there i started casually asking previous models and those who had inquired if they would sit, as i did more and more i got into a groove the vision of the works came clear and i knew as my main piece i wanted to pay homage to my first piece sold professionally"perfect chaos".since that piece was an escalation of me losing vision transitioning into more modern/classical art it was the best choice.

It  become something i looking forward to, seeing friends/models i had missed and not seen in awhile, girl talking, art, music, and laughing,..lots of laughing!


model/friends Brit and Larissa  getting plastered, oh yeah and me being silly

When they sat down i would tell them to relax and think about the viewer. T o remember to focus on the viewer that cannot see or see well, to remember how they would feel the face how they would feel it, and then id tell them to think of a thought or emotion, whatever they thought was small id tell them they see in the face. They all sacrificed hair, skin and patience to sit for me! they were wonderful, my bridg,ne',brit,vero, and issa,.. and yeah and i sat,..

I decided through this process if i was gong to make my models do it i would too, and since my vision is is so i knew it wouldn't matter if i casted my face and couldn't see. I pre cut the pieces, set up all my supplies and laid them out on our bathroom counter where i could find them with only my hands. AN hour later i somehow finished doing the whole process completely blind, and learning more so what they went through for me.

As i assembled the first four touchable pieces i realized that i was achieving that which i had prayed for, the idea coming through better then i could have hoped for.



"the most perfect chaos" in its sculpting phase




"the most perfect chaos" final stage




attaching the arm to touch "the famine touch"







at the opening, "release " on far left, "longing" on top right, and touchable  piece "three graces" on bottom right




self portrait" Rae" touchable piece in final form waiting to be hung

As i reflect back and feel blessed that i could make a dream come true through my art, i am thankful for my friends, and thank god for giving my the drive to paint. The  next 2 pieces I'm doing will be touchable and on the largest scale i have ever done, At the show people got to touch and feel my art. being able oto say " yes please touch the paintings it ok here! its not a museum please experience it with your eyes closed as well" what a reaction!

I look forward to finishing the next two pieces " muses 9" and "Adam and Eve", and watching people see through there hands the beauty of my models :)

inspiration and love comes in the littlest packages

My daughter walks into the front room and taps my shoulder,
"mommy?"
"yes peanut ?"
"I'm so glad your an artist."
she says this and hugs me, big smile on her face as i hear the room grow silent and i hold back a tear.

i promised id go to her parent teacher conference in my hello kitty pj pants, and i kept that promise :)

My daughter is 6 yrs old, and she has a lot more on her plate then some average kids do, she has many many questions about mommy's vision, and art. After i had done my first show, had my mentor passed and then was rejected from the second show i had a new burst of energy and had donated some pieces i made to a charity fundraiser. I was catching speed again finding a groove and thought everything was gong great. Then the best curve ball was thrown to me, doctors were confused, they said i couldn't ever get pregnant but there i was at the doctors office, finding out i was 2 months and expecting.

sometimes bad things can happen to make room for the best things in life, me and my fiance separated, and i began the journey to single blind-ish parenthood. It was terrifying I had all of these second thoughts that id have problems and what do i do if i cant read the expiration dates and,..all you who are parents with  blindness no matter what degree remember the panicked thoughts and sleepless nights I'm sure. Even parents with out disabilities I'm sure have some sort of  pre-parenthood panic.

then the day came when God brought me my little miracle, all 6 lbs plus of little bouncing baby girl.My art sat back for a year while i raised my baby girl, with amazing support of family and friends. The center of my world and all around it, truly my miracle. Soon my fears started to pass and i got back into painting, when i painted she would color.

Soon she got old enough to ask for things and questions, "we have car?" "no baby mommy cant see good enough to drive""why?"
"whats that?""its my cane""why?" soon that question became"mommy why don't you use that more?" and my answer is always" why when i have my wonderful seeing eye daughter?"

As  I started doing more shows i would bring her with, and she would tell people all about me.The first local convention art show we went to she came with and sat in the room in front of where i was starting to hang my paintings. It was my first time showing at this con and she was excited. :hi: she would say when  someone walked pass,"this is MY Mommy's art!". They would always smile and giggle and tell her she was adorable.She got so into my shows even starting at 3 she would ask to make her hair light pink like the girl from lazy town so she felt as artsy as mommy shed say.

A few weeks ago  i finished three paintings, "beauty in the haze" its a series of ballet dancers done on canvas board painted in a blurry black and white."mommy do i touch these so i can see them like blind people do with my hands?"
"no sweetie, stand back over here now look at them, make your eyes all squinty til they are fuzzy."
"OK,.. wow those look cool!"
I laughed," glad you think its cool that's how it looks if mommy was to go and watch a ballet."
"oh,.mommy i love your art!"




My biggest fan modeling in front of her favorite piece


Through every thing i went through and continue to my daughter has become so accepting and understanding to someone with a disability no matter what it is , its not a big deal to her, she See's them as normal just like mommy.She knows i cant see allot but is so supportive and encouraging.She is by far the strongest woman i know.She goes to all my shows, and if you ever go to one i can guarantee that ll you ll hear my little girl explaining my pieces to passers by or bragging about how proud she is of me. she watches me paint,comes in the morning to see what Ive done and even tells me i need to sleep more.

At the opening  of "altered Perception "she was there, showing her friend another little girl at the show how to "see" with her hands to read her mommy's bio in braille



Our friend on the left and daughter on the right


This morning she tells me" mommy i want you to cast my face so blind people and people  like you can see me too. I promise i won't be scared""  I'm sorry sweetie but maybe when your older but you can watch me when i have more sittings. i replied. "yay!" she says as she excitedly dances out of the room.

I am the luckiest woman alive to have such a miracle and such a big little fan. I don't know where I'd be without her :)

To my own eyes stay true

This past 30 days of art and creativity has been more than i could imagine. I think perhaps in this short time Ive learned to accept and push myself more then ever before.

After starting this blog i realized it was good for the soul,  i mean it felt  good to type out how i felt felt through this journey and learn about others along the way who are own their own path living with and accepting there vision loss.After writing "you  say blind like its a bad thing,..yes maybe i do" I met Belinda. After corresponding back forth on our respective blogging pages and talking about embracing what you see and really putting it out there in whatever art you do, i starred at these ballerina sketches i had. They sat for almost a year in my studio. When i had decided to post pics of the sketches people really liked them but i didn't know what to do.I had started painting the black and white shadow series "double negative" in 2005 and i didn't want them to be the same.That night after reading her blog  "blindish" and commenting on each other, i turned and its as if they were waiting for that moment. I  took  out nothing but the black paint, and thought about how it is to watch a ballet from the audience,.. i see no color, it really is a have of beautiful movement and darkness.And here i went losing myself in this moment not trying to do anything but show the beauty in the haze.
This is what i learned from that,..


Beauty in the haze




Rehearsal




Center Stage




Opening Night


It felt so amazing to paint these and then have so many people find the way in which i saw the dancers to  be lovely , embracing my impairment even more helped me to feel even more comfortable on the canvas.

The show opening went amazing, and through the show i was asked by a friend to submit to a show gong on this weekend, I knew i needed to push myself from my comfort zone once again and said yes. I had some sketches i had done, more fantasy inspired of Faeries  Mermaids, centaurs,  since i knew some many including my daughters that loved them. After the opening one of the big hits was the belly dancer painting with the purple aura. I have tried to stay away from color. I  have lost much of my color vision and what i have is so muted from my light sensitivity, things look washed out.Between that and  me thinking no one would want bright colors and choose not to purchase based on their own color opinions i just stopped altogether. The last pieces i made were the s"study in humanity" pieces and i hated the way i tried to paint them.Even with that being said i decided to push myself anyway. I pulled out the sketch book and the canavas' that had sat and to my surprise i just  kept going! once i started i couldn't stop, no sleep not even much coffee needed. Hands growing encrusted in layers of paint as i kept moving,.. til i have 6 paintings done.Reluctantly i started posting them on my facebook, hoping that i did ok trying to keep my style but bring some color and fantasy.

Shockingly enough people loved the color, i didn't understand i thought it would be horrible but even my mother said,."even if you have to paint it brighter to see it the color is good".

My experimental fantasy series


Morning Dew




Meadow




Meadow,Midnight,Morning Dew, and Sunrise




Blush




Pearl

Hopefully they will do well in this weekends show, but even if they don't i know that Ive learned so much through my art and i remember to stay true  to what i can see, and continue to show the beauty in it, to my own eyes i will stay true.
My art is viewable this weekend at Capricon 2011 at the Westin Chicago North Shore and thru February at the Black Box Diamond in Hoffman Estates

the exquisite touch of braille

sitting at home still in a feeling of being blessed and tired, I was  excited to be asked to do another show this weekend. Coming off of the gallery opening and most of my works being there,  i went home to start getting together some pieces  I've been working on  to finish.

Through the coarse of gearing up and doing the touchable double negative pieces i decided to create more braille art. To me nothing is more  beautiful then writing something  on the canvas for those to see without vision and giving them a word or thought to create there own beautiful canvas in there mind.

I had several pieces from small ones that read "faith" in braille to larger ones that read"imagine the most beautiful thing".I had even made one that said my quote" we exist in beauty but choose to ignore it".

(this one reads "braille is beautiful")

 to my shock and joy two pieces of the braille art sold! This to me was so wonderful, i had created something in braille that people with  full sight found to be beautiful! this left me feeling far more encouraged to finish the braille pieces still at home in my studio.The next day i went to pick up more supplies and more beads to finish the ones at home.As i squinted to read the itsy bitsy print on the beads boxes a  store employee  came to offer me  help" can i help you miss?" she called me miss that was sweet, "yes please,.."  then the inevitable happened ,I realized i had to speak to someone at a store admitting my impairment to seek help. This is never easy no matter how long you've had it or the severity but i felt more confident then usual and explained to her that i needed a certain size bead, the shape and how many. Now this seemed to only  perplex my store helper more. She stood silent for a moment then very meekly asked" I'm sorry ma'am but can i ask what exactly you need these for?" OK,..I then explained the braille art i was making.I was shocked to see her face light up! she asked so many questions, not ignorant at all. I found out that she was a student going to school to work with ,..the visually impaired! Adults more specifically and she very excitedly dragged me around through the store to help me find everything i needed.

("love looks not with the eyes but with the mind" from the Tempest by William Shakespeare)

That was the first positive experience i had had in a store in a long time like that i made me smile the whole way home.Once home i began finishing up the last braille pieces left on the art table.I had taken some quotes from two of my favorite Shakespeare plays and drew them out in braille.After setting my braille beads up i held up my two experiments to see if i liked it,..and i just don't know why but Shakespeare is especially stunning in braille.My fingers ran over every bead, each placement and thought about bringing the art of braille to more sighted people. When your sighted you see braille in the oddest spots and it becomes a joke, but those who see it in my art i hope they realize how much it means to those who need it :)

My guide dog is a dachshund

so this morning as usual i did my morning routine,..

got my daughter ready for school and out to the bus, let our fluffy Maine Coon kitty Seven out on the porch so she could chase snowflakes,

 and then took out our Lil doxie puppy Riley.

Riley is almost 2 years old but the newest addition to our family we adopted him from a bad situation this past summer. He is an adorable black and brown medium haired 6 inch tall doxie boy.



I have been struggling for many years now on whether its time for me to get a guide dog, and well frankly i know it has been, but with all the support i have gotten from family and friends and my sheer stubbornness Ive put it off for as long as i could. I know that going out at night or in the bright sun is horrible for me, i admiringly walk around in a blur.Over this past year even i have come to accept that i cant go out by my self either, and i know a guide would help me be self relient again, maybe i can blame my stubborn nature on my irish heritage.

Well this morning i took out the doxie while my significant other slept in a bit and immediately had a rough time. even with my sunglasses on it was so white from the impending snow storm. The brightness and the multi levels of uneven ground being covered by a bright blinding blanket was going to be a challenge. Having no depth perception this made me nervous.

Then i looked down at Riley, there he was tail wagging ready to run through snow he knew was taller then him. He wasn't apprehensive at all, I could learn  alot from my little guy. "OK Riley show me wheres your potty", then off he went running through the snow dragging me around obstacles that i couldn't see but he could. Huge clusters of snow or drops in elevation that were big to him and would be bad for me he moved me right around.Somehow he even found the best way up a hill so i wouldn't fall!

I realized that even though i don't have an actual guide dog yet that he and I had learned how to navigate together and follow simple commands.He may not stop so well at a curb but when he heard the car coming down the drive he stopped for me.After he had his fun and went potty it was time for home"Riley show me home!" and off he went ! Ears flapping in the wind maneuvering around the obstacles with speed and agility to get me back home.

He may not be guide dog material to some, and really not all that i need but he is a wonderful guide to me and if i admit it or not maybe he is training me to BE guided.