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.