Hrissy,
I am late to the party here, and others have already given you excellent advice, both on the practical management of eye issues, and the "how do you live with it" issues too.
I have had the paralysis for 9 years now. At first it was emotionally devastating. I opted for not having the nerve transplant, or whatever they call it. Even the best case scenarion of possible outcomes seemed like a case of "diminishing returns." I had a couple years of facial exercise training, which did help quite a bit just in terms of facial "posture" and maybe tone.
I did have an emergency tarasopphy (spelling?) a month after surgery, then later, a gold weight, which worked well at first, finally malfunctioned, and actually started eeking its way out. Eeek! did I say Eeek! It was quite frightening, and finally the eye doc pulled it the rest of the way out.
It turned out to be a blessing, because I had been persistently pestering the insurance company for a few years to approve the palpebral spring implant, which Dr. Robert Levine in Los Angeles does. Finally I got the spring, and it has improved my life tremendously. No more having to cover my eye at night. My eye actually closes now.
I think your biggest question was 'how do you live with it' which I take to mean 'how do you cope emotionally with it?'. Well, I eventually got used to it. I live a normal life, do fun things, and have a pretty rich life in many ways. At some point I stopped thinking about my face everyday and just started focusing on whatever else was going on...socially, work, etc...
Some of the other challenges of AN were bigger priorites, too, and that eventually took my mind off my looks. For example, I love being outdoors, and a walk outside each day is important to me. It was very important to get my balance back, which was done mostly by walking more each day, and getting back to my Tai chi clases. Being physically healthy and feeling happy by being in movement, is actually more satisfying than worrying about my looks.
Then there was the matter of work. I took the AN as a wake up call about our mortality, and decided it was time to transition back to being a therapist, after a few years of a more financially stable position as a social worker. That work just was not my calling, and I wanted to get back into the real work which I felt called to do, and leave my comfort zone.
So in my transitoning back to doing therapy, there was the matter of going on job interviews with a crooked face, to find a job to get fresh experience. It was necessary then to tell potential employers my story, so they wouldn't just wonder what was up with my face, and not hire me. Then there was some nervousness at first about new clients coming in, thinking they might somehow not think I was competent because of how I looked. But as it turns out, people are more concerned, of course, with their own problems, than what their helper looks like.
To make a long story shorter, my life in general is pretty normal and happy for the most part. The facial thing is mostly a soft 'background noise' which is heard mainly when I see pictures of myself, which gives me a temporary feeling of sadness. Yes, it would be great to have my big smile back, but I can still have a big hearty laugh even if it looks funny. Most people look funny when they laugh!
Kate
