My husband, Sam, has Usher’s Syndrome. Adjusting to being around someone deaf and legally blind was difficult for my little broken family (I had been divorced for two years when I married Sam), but we caught on fast. We learned not to leave things on the floor (at least where Sam walked) and to put things back in the same place they had been, as well as many other useful little lessons in surviving with the mostly blind.
I didn’t know any ASL when I married Sam, and neither did the children. I became rather fluent in a matter of a few years and the kids can fingerspell almost anything and know all the most important signs: Heavenly Father, bless the cat and the food, in the name of Jesus Christ, Amen.
I probably push Sam a little harder than he pushes himself. Maybe that’s just a wife thing or maybe it’s because I believe in him more than he believes in himself. For a long time he would voice the fear that if he did what I expected him to do a) I would expect more b) I would keep expecting more and more.
I don’t know if that was true when we were first married. I had fears myself back then: a) that I was making all the same mistakes from marriage #1 again and b) that I had no idea how to live with a disabled person and Sam did not look like he appreciated the odd position his views about the non disabled put me in.
Sam seemed to hate being treated as if he were disabled and at the same time, hate all the things that are ‘normal’ for non disabled people that made his life difficult and dependent. He also hate when they are the object of pity, and pity is so close to compassion and inspiration when it’s only in text, that it’s hard for some people to tell which is which, and so they assume the worst (because that is what life has taught them to expect). It was very hard for me to know when to let go and just watch him try to navigate around the ‘trippy tree’ (as he named it) and when to go to his side and be his “seeing eye wife” (as he named me).
Sam would rant when other people called him ‘inspiring.’ He feels like some Poster Child for Jerry’s Kids. We fought often enough then that it was easy not to be inspired by him. But the in between times, when he could knock all the dents out of his breastplate and be my knight in shining armor again, were just enough for me to remember that he is the finest man I have ever known. When he held my hand and spoke to me in terms of real, true love that I had never known before him–I glowed. Still… it was work. Real work. Hard work, even for a deaf-blind man. No couple thinks and expects less and less from their spouse while they are on a positive course in their relationship. You have to hang onto those bright shinning moments and make them last long enough, and shine bright enough to get through the dark moments when THE NOTHING starts to swallow you whole.
There are lots of frustrations of living with and dealing with family, friends and associates. There are a lot of unexpected moments living with a deaf-blind man. There is much to uplift and inspire and what’s more: to remember. My plan is to share them all here for as long as my lamp can burn in this space.