You sound like you are handling the situation pretty well, all things considered. Stay positive and positive things will happen.
I have Coat's too. One eye is like yours. The other has some vision, but perhaps more limited since I also have retinitis pigmentosa. I'm still working, productive, and enjoying life. And I plan to for many years.
Also, my family on my father's side came from Norway. My great great grandmother spoke Norweigian.