Over the last eight months I've noticed similarities in behavioral quirks between Mr. PNU and my youngest son, B—. Autistic spectrum disorder sometimes lacks interpersonal interface. My husband's brain damage often produces the same disconnect.
Where we used to communicate with no breach, there are now chasms. Where he used to have impulse filter, there is now only enthusiastic lack of inhibition. Sometimes our interactions are less the sort one would expect between spousal peers, are more like exchanges between a parent and a toddler. One of the biggest challenges poised by this new life is that I am trying my hardest to respect my husband's autonomy, while he has lost the ability to organize his desires into the context of his near complete dependence on me.
Sometimes I get swallowed up in the demands of fulfilling his wants, and the individual that I am begins to dissolve and disappear. The hardest part of this emotionally is that so many people want Mark to live a "normal" life. They want to see him achieve his goals. They want to see him overcome his trials and limitations. But very few people seem to understand that I am being sacrificed in order to make these things happen.
Mr. PNU wants time to read his entire library. I have no time to read. Mr. PNU wants to return to teaching. I find I must discontinue my education to meet the demands of his return home. Mr. PNU wants to write and publish articles. I am stealing a few moments while he's in physical therapy to write for the first time in weeks.
I'm asked frequently if I'm taking time for myself, but I'm uncertain where that time is supposed to come from, and no one offers to help to give me extra hours.
I grow weary of hearing people claim that everything he's able to do now is because of miracles. Such statements erase my efforts and ignore that I am dissolving in order to support the illusion of divine intervention. And to be perfectly honest, he's still completely dependent on me regardless of the miracle of slow but sure progress he makes each week. We're still locked in the odds. Nobody's triumphed. And praising be I think absolves people on the outside from the responsibility of supporting and crediting me to get done what they cheer about.
All this aside, I woke this morning very happy to be married to my husband. He loves me more than I've ever felt loved. He is patient with my lack of sufficient energy to bring about his every hope for every day. He wants to communicate with me, even when he doesn't, or when he can't. Even within his limitations, his kindness and determination give me the encouragement to keep going. But he is changed. He is not the man I married. And my burden is heavy, and the sorrow and loneliness is sometimes deep.