"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.