"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 .

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.