Ginger and I have been friends  since Jr High and with the graces of Facebook we have recently reconnecting with each other. Thru reconnecting with Ginger I found out that she has a degenerative eye disease called Retinitis Pigmentosa and was declared legally blind in 2000. 

Imagine yourself walking thru this beautiful world and not being able to see or recognize your families faces, see the colors of the world that you once were able to see before or the simple thing of trying to find a product in your pantry to make dinner for your family. This disease is taking these few examples and many more gifts away from Ginger more and more every day and it is a struggle for her and her family.

The other day I was watching the Steve Harvey show and there was a blind gentleman on the show that was talking about this new product called ORCAM MyEye 2 which is a device that attaches to a pair of glasses and it is for the blind and visually impaired. This product reads text, recognizes faces, identifies products, recognizes barcodes and works off blue tooth and voice commands. I was excited to see this product and contacted Ginger immediately with the information and well that is where the Go Fund Me comes in. At this time in Ginger and Lances life they are not able to afford this product and insurances will not cover the cost so I am asking for Ginger and her family will you please help Ginger get her abilities back with the help of this product. The ORCAM MyEYE 2 would not only help Ginger on a day to day basis but it will also help her family have a little piece of mind.  If we all rally together and give a little we can and will make a difference in some ones life today, it will be a gift that will continue to give every day.

I had asked Ginger to provide me with her story so I could share it with all of you so you know the struggles she faces and what the past 35 years have been like for her.  

Her is Gingers Story:

I was diagnosed with RP when I  was 14 in 1983. It is a hereditary genetic disease that my paternal grandma and great grandma both had although it skipped a generation with my dad (who has keratakonis instead). At first the doctors were not convinced that I had it so they sent me to do some special testing and then had my files sent to a specialist at the University of Minnesota I believe who confirmed that I had the disease. The early symptoms were night blindness and then in junior high even sitting in the front row I couldn't see the blackboard. After being diagnosed I received assistance through vocational rehabilitation and was able to get all of my text books in enlarged fonts and had note takes for classes. At 16 I was able to get a drivers license but was restricted to daylight driving only. The disease for me has been a gradual degeneration or death of my retina cells. Tunnel vision and loss of peripheral vision progressed slowly.

I was told by a specialist that the hormonal times in my life, puberty, child bearing, and menopause would probably escalate the progression and boy were they right. My oldest was born in 1996, and my next in 1998 and when I went  back in 1998 to get my licence renewed i was told that my peripheral vision was less than what was required and I was unable to drive from then on. I had two more children in 2000 and 2001 and had started my own business and stayed home with my kids but darn was that challenging. It is a challenge when the school calls and you have a sick child and you cannot go pick them up, not being able to drive to the grocery store when needed, or even getting to my childrens school functions. And helping them with homework was impossible.
I was declared Legally blind in 2000 I believe.

For a while I was able to do large print books and such but that was short lived. I took mobility training around 15 years ago but was terrified of using the cane for years because i was so afraid of what people would think. When I married Lance Anderson in 2011 and being in a marriage with total love and support helped me to begin to overcome my fears and embrace my vision loss. To the point that for a couple of years I even went back to work here in Bismarck starting as a cashier at Target, to Assistant Manager at Chicos, and then Store Manager at Eddie Bauer. This also helped to boost my confident being a disabled woman and having employers who were willing to accommodate along with voc rehab but that was also short lived as from the stress of working my eyes began to develop a fast growing cataracts. The doctors will not remove the cataracts because it is growing to protect my retina so I had to resign from retail. One thing I can say is that I never stop trying to find something I can do from home to help feel useful.

So this is where I am currently. I have about 5 degrees of vision with no peripheral vision, I have no contrast ability now and am extremely sensitive to light. I have to invert my colors on all of my tech devices to a black background. My bad eye is 20/800 and my good eye is 20/400. Glasses do not correct my vision but I do wear them for magnification and I have basically three different prescriptions and 2 different pairs. The challenges I face daily are immense. Being able to match my clothes, which is next to impossible, my bestie comes over and puts together outfits for me or i send her pics and she tells me if i match or not. I run into walls quite a bit, I've had a couple of pretty bad falls this past year. One going down the stairs where one of my children left his shoes in front of the bottom step and I stepped on it and my feet went out from under me carrying a full load of laundry, I fell back and hit my head on the steps. One of the other huge struggles is finding things in the pantry or fridge. My family are horrible at not putting things back in the same place and it can literally take me hours to find things some times. I haven't been able to read a menu in years and the only large print/braille menu I've ever seen is at cracker barrel. I cannot shop on my own at all I cant see colors or read labels and I hate taking 4 different devices to the store to try to do it as people are not so friendly!!!!

Finding employment has been next to impossible and I do feel as though our voc rehab here is not educated enough or equipped to deal with vision impaired people. Technology has been a god send though as there are so many things that I have access to that my grandmother and great grandmother did not. Thank goodness for accessibility options on computers and phones. And there are many apps out there too.

Also I was told by the specialist back in 2004 that my children would have a 1 in 4 chance of getting the disease and my youngest Gabriel was diagnosed at 13 and he is now 17.

I hate going to the eye doctor because it is like a nail in the coffin every time I go. I often tell people that it is like a life long death that never stops which makes the grieving process of that death never ending.

I struggle with self worth and purpose. I have been suicidal. My depression and anxiety can be all consuming especially in the winter months in ND. I was telling someone the other day that at 48 years old I still don't feel like an adult a lot of the times because of being so codependent.

But ultimately I never stop trying to be productive and find things that I CAN do for as long as I am able and then when I cant do that anymore I find something else.

My dad has always told me that I can feel sorry for myself but then I need to get up off my ass because no one else can do it for me. So I guess that is what I keep doing although I feel like I am losing that battle more days than not. I honestly don't think I would have survived this if it werent for my husband Lance and my Parents.

Ginger (Longmuir) Anderson