What it's all about

I work with people who have developmental disabilities. One of the people I’ve grown closest to is T, a woman with Cerebral Palsy. T was at my wedding, and was the first to meet us at the door in the reception hall, with a huge smile and a huge present. I think the reason T and I have bonded so much is that T needs a lot of help to communicate. She’s only able to do so by blinking to say “yes”, and shaking her head a little to say “no”. We have a book of topics she usually wants to discuss, and she can tell us what she wants if we use the book and ask “yes/no” questions until we get to the one she wants. So it takes a lot of time and attention to find out what T is trying to say. And because I’ve invested so much time in understanding her, she’s also come to understand me, and that makes us close.
Over the years, T’s ability to digest food has gradually decreased. At the wedding, she was able to have cake and non-alcoholic champagne. A year later, the risk of choking had become too great, so she was switched to tube feeding. After a while, that type of tube feeding wasn’t working, so they had to use another type. After another while, she began to need medication to keep her bowels moving. Then more medication, then different medication, then more and more frequent hospitalization.
This week, her bowels stopped working entirely, and there’s nothing the doctors can do to start them again. She can no longer take in nutrients. This means that she will die. We could make the process slow and painful if we intervened, but she will still die. So we decided not to intervene, except with pain medication.
I was the one who told her she was going to die. She surprised and impressed me by taking it better than I did. She’s angry, sad, and scared, and so are we, but she’s still taking it better than we on her team took it.
Soon after she got the news, she wanted to tell one of her staff something. After playing 20 questions, staff found that T wanted to write cards to people. When asked which people, she indicated “yes” to each person, until we asked “Do you want to write to everyone?” YES. YES. YES.
So I got stationery and markers and asked who she wanted to start with. She wanted to start with her boyfriend D. I helped her pick out the color of the card, the color of the marker, then asked her what she wanted to say. She indicated “Love, love, love, yes, yes, yes.” I asked a few more questions to make sure I got the wording right, and what she wanted to say was this:
“I love you. Thank you for loving me.”
So, I put the marker in her hand, and hand-over-hand, we wrote those words and signed her name.
D has a disability too. He has autism, and noises overwhelm him so much that he has to wear headphones ALL THE TIME. He finds hospitals especially overwhelming and scary. But when his mom told him T was in the hospital, very sick, and this might be the last time he would ever see her, and asked if he wanted to visit, D was dressed and in the car in less than a minute. When he came in, he smiled, touched foreheads with T, waved bye-bye, and walked out. He came in a few minutes later, smiled, touched foreheads, waved bye-bye, and walked out. Once more he came in, smiled, touched foreheads, waved bye-bye, and walked out, and that was all he could cope with.
Later, his mom read him the card. D smiled, signed “Love” and pointed to T’s picture. “Love, T. Love, T. Love, T.”
That’s humanity, stripped down to the core. That is who we are, and what’s important about us – giving and receiving love. T and D helped me remember that this week.

© John M. Munzer