I was chatting with my friend Neil this morning. We were both sharing how we are feeling a bit afraid to travel. Neil is going to Michigan for a month to visit his girlfriend Petra and I’m going to India.
I met Neil a few weeks ago when I went to the hot springs for a retreat and I have to say, I fell in love with him right away. He has such a beautiful spirit, sweet smile and a fantastic sense of humor.
Neil was disabled by Dystonia when he was eight years old.
Here is part of Neil’s story in his own words:
My name is Neil Marcus. I’ve had dystonia from the age of eight. I had the usual difficulties getting it diagnosed. It progressed very rapidly. I was incapacitated.
Three surgeries later I had improved enough to live independently. After the second surgery, I regained my ability to hike and ride a bike, but it didn’t last. I have a long-time friend who always asks me, “How’s your friend?” She of course is referring to my Dystonia.
By societies standards I am a severely disabled person who should be living in intensive care. That would have been okay too, but I didn’t want to. The human growth movement in the early 70’s had a great affect on me. I realized that I had a lot to offer the world. Thousands of relationships with all kinds of people were ahead of me. Interesting ideas and philosophies I was yet to encounter. And also the world had a lot to offer me.
I see isolation as the biggest problem that affects peoples lives. What I want to tell people in my story is that: THERE’S NOWHERE TO HIDE. YOU BELONG IN THE WORLD.
I know what it’s like to hide because I did a lot of it in the early years of my dystonia. I didn’t want to be different. I didn’t want to be seen in public. I didn’t want to use a wheelchair (though I needed one). I was very afraid. So I pushed myself little by little out into the world. My life at 30
Though he is ‘disabled’ he is more able-bodied than most of us! He has written books, acted in plays and been on television, paints beautiful pictures and has fallen deeply in love with a very special woman.
This morning was our first phone call. We’d been trying to chat via IM on AOL and I couldn’t figure it out so we’ve only been emailing back and forth up until now. (Neil is a real techie and I’m not.)
Anyway, this morning I got a call from a BLOCKED CALLER. I’m always hesitant to pick those calls up. I never know who will be on the other end of the line.
Anyway, I hear this groaning on the other end.
“Who is this?” (I’m feeling somewhat alarmed. A prank caller?)
More groaning.
And then:
“Neeeeeeeeeeeiiiiiiiiiiilllllllllllll!”
“Neil!!!!” I am delighted that he has called and we are finally talking in ‘real time’ rather than emailing back and forth.
We tried speaking to one another on the phone but I’m having a hard time understanding him so we decide to chat via Facebook chat.
Much easier for both of us.
“Finally I can express myself, “ he writes.
I tell Neil about my travel fears: going alone, do I really want to go to India, etc. He tells me about his fears of his month long trip that is coming up soon.
“I support you,” he says.
And I can feel his support. What a beautiful man.
When I first met Neil a few weeks ago I walked up to him in his wheelchair and said, “What’s your name?”
“Neeeeeeeeeeeeiiiiiiilllllllllllll!” he said.
“Neil?” I ask.
“Yeeeeeeeeeeesssssssssss!” he replies, nodding his head and giving me a 500-watt smile.
I was (and am) delighted that I can understand him. We speak the same language.
I was a little sad this morning when I realize the phone makes it challenging for me to understand him. Being with him live and in person helped me understand him better because I can read his lips but at least we have the Facebook chat which makes it easy for us both to understand each other.
When I chatted with him about the thunder and lightening storm we had last night he wrote, “Bolts of electric volts”
He’s a poet and I love his simple yet profound eloquence.
When we were at the hot springs I held him so he could lie back and just float. He did that for a few minutes and then got restless and wanted to be vertical. So I helped him up and he looked at me with a glint in his eye and began hopping in the pool! (Neil gets around by crawling or hopping and holding on to things when he is not in his wheelchair.)
So we started hopping in (what is supposed to be) the silent, meditative, warm pool and at first people in the warm pool were giving us the hairy eyeball for hopping and ruining their peace and tranquility but then someone came over and began hopping with us and then another person and then another person until eventually everyone in the pool was hopping with us!
Neil and I were in the middle of this huge circle of people who were holding on to us and hopping, the water was sloshing over the side of the pool and we were all laughing hysterically!
It was incredible.
And all the while Neil is looking at me with his big grin and that mischievous glint in his eye.
He’s hilarious. And quite the troublemaker.
I really like him.
About Me: 
