Friday, January 30, 2009

the evidence of things unseen

A couple weeks ago Alex, Rebecca, Dani and Liza braved the wintry roads to come see me! It’s been so long that I’ve seen Liza, it was good to see her and give her one of my signature squeezes. Of course I had to get an update on all the kids. They’re growing, talking, being themselves. Hopefully, when the weather gets warm, they can make it down to see the Bronx Zoo, it’s so close! We talked as usual and the time flew by. I can’t wait to get out of here so I can visit them. Being with them is like being home. -So- much of my family is in Ithaca. I’d imagine having a summer place upstate and a van we can pile in. I’d love for my mother to have a place outside the city to do whatever she wants; paint, write poetry. I’m trying to plan my life once I transition from here.

The other day, I got some sad news that my good friend John died earlier this month. He was a walking quad but had tracheal stenosis like me. Somehow the inner part of his trach came out and they couldn’t put it back in time. I am so upset about it but he doesn’t have to suffer through this anymore. He was dependent on oxygen and had serious coughing fits. He couldn’t travel. He was an older gentleman, fought in the Vietnam War, and raised a family. He had such an open, loving spirit, which is why it was easy for us to be friends despite our differences. I’m going to miss him dearly. The good thing is that all the wonderfully indescribable beauty that exists in this short life points toward a greater beauty in everlasting life with those who recognize the great I AM. So it is not the end for John.

I’ve been preoccupied with getting an appointment at Mass General Hospital to see the top tracheal surgeon in the country. The docs at Mount Sinai have been giving me grim outlooks and I can’t accept that. I joined a yahoo group for people with tracheal stenosis and they’ve been telling me to similar stories, doctors that say there’s nothing we can do. It’s going to be a long scary road with risky surgeries and recovery processes but I can’t give up. I have faith I will talk again and even walk again.

Wednesday, January 14, 2009

in the hood, in a nursing home

There’s a woman here who’s always placed at the front desk, in her wheelchair. She can move all her limbs to some degree but cannot walk. She constantly cries and reaches out to any staff walking by but cannot verbally communicate what she wants. The most everyone knows is that she wants to go to the dining room to eat but she cannot. She cannot swallow and so, has a feeding tube. Her vocal cords are probably paralyzed which may be why she can’t speak. I’m usually good at communicating with other non-verbal residents, but I’m not sure how much she understands. I mime to her but she doesn’t seem to know how to mime back. I can’t imagine how frustrated she must be and am trying all I can to establish some communication with her. The best I can do so far is sit next to her and hold her hand.

I moved to the fourth floor yesterday and so for it’s been a good choice. The nurses on the seventh floor were awful except for one and he’s only there 2 times a week. I am going to miss the CNAs and the other residents though. I just need better care at night with my trach.

Still no luck finding a doc to give me better odds about getting the trach out. Too risky. Can risk ability to swallow, speak or collapse trach altogether. It’s very depressing but I have to continue day to day and be thankful. I can breath, eat and communicate. It’s just hard with no voice. There’s no zest in my speech, the Nicky trademark. In a way it’s been good. I’m too quick to say what I think and it can be hurtful. Now, it matters less what I say but more how I respond to people. I just always felt that life’s too short not to say what you mean. I still feel that way. Say the good too. Say you’re sorry. Say how much people mean to you. I didn’t think about any of those things while I was slipping off the roof. I said what I had to say. But it takes more strength to just listen. To set aside verbal daggers and serve people because they need it. It’s not easy for me to do! It took being voiceless to learn that and I should be thankful even though it’s frustrating. Anyway, time for more routines-peace.