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Wednesday, June 10, 2015

A Stroke of Bad Luck, From Dependence to Independence : A story I wrote in 1998

I saw something tonight that made me cry while I was waiting at a stop light. A man started across the wide street, slowly, with a cane in his right hand, his left hand curled up in front of him. He did the slow step-together walk of the wedding march, that I've become used to.  It's not that I've been in so many weddings, but because Walt walks that way, since his stroke in 1987.

Walt in 1988
I wondered about the man who was slowly crossing the street.  "What kind of life did you have before? ...before life as you knew it was changed in the twinkling of an eye? Your blood flowed through your brain and got stuck there for awhile, long enough to damage crucial parts. What was your life like back then? Did you have big plans? Was it your birthday? Do your children recall what you used to be like? Maybe not. Some of them may have been too small to remember the warm hugs and the rides on your shoulders."

As I sat there in my car, I prayed that the man would make it all the way across the street before the light changed. I imagined the tension of the people in the other cars as they thought about the places they had to be 5 minutes ago. I thought that the folks in this man's family and those who know Walt, should acknowledge the people that these men were before, but should also appreciate how courageous any disabled person has to be to go out into the world on their own. We all must remember how they used to be and then appreciate how difficult it is for people with strokes and for other disabled and even blind folks to go out, and on with a new life....a completely changed life with fewer skills to draw upon.

This is not something you would wish on anyone, and you hope doesn't happen to you or anyone you care about. Just imagine someone you love suddenly not being able to sit up, or walk or speak with you in a simple conversation. It's not a dream. It's really happening and it won't go away. "What will I do?",  you think. But what will THEY do?......these people that are struck down? They're given a lot of support through physical, occupational, and speech therapy, but they have to have a strong spirit to pull themselves out of an hospital bed and into their new lives.

The attention they're given is like water on a plant. Sometimes Walt would brighten up all through his physical therapy sessions, and swear enthusiastically to the therapists that he would do all the exercises, only to come back the next time to charm her once again with his crooked smile, without having practiced one exercise.
As these people are given the skills they need to get on with their new lives: how to sign their name, cook without  being burned,
Making his own lunch.

and how to make a phone call, they bravely go out into the world using their canes, wheelchairs or electric Lark carts, to try to take care of themselves. Walt, for one, hasn't let the stroke keep him at home. Even when family members tried to protect him, and keep him there, he found ways to escape from his home in Richmond, CA, take BART to San Francisco riding his Lark cart, and visit some of his old haunts. He used to work at the Hilton as a banquet manager, and fight for the union rights of Local 2. He'd have lunch, and then come home a little too late to keep the family from worrying.

Soon it was realized that he still had his sense of direction, and even though he had trouble communicating with speech (aphasia), and was paralyzed on his right side, he could still have adventures and have his longed-for freedom. His daughter made him a little card that he hung around his neck with his ID, explaining about the stroke and his difficulty with speech. In order for his family to know where he had been that day, he collected souvenirs, like matches from restaurants, business cards, notes from people he met or sometimes he took a photo.

Perhaps since he has had more "time on his hands" (not really, if you count the extra time it takes just to get dressed), Walt notices things that are wrong about the world of the disabled. He likes to feel he can do something about them. Conditions that effect disabled people are at the top of his list. People in wheelchairs (including Walt), have gotten off at BART (Bay Area Rapid Transit) station where it's necessary to go to a different level to transfer to another train, only to find out that the elevator has been out of order. Very frustrating! "ADA!", he shouts, pointing his left index finger to the sky. (FYI: ADA is the Americans with Disabilities Act, which was passed in 1990).

On the night that I write this, he tells me through a series of charades, words, and faces, that handicapped people who have had trouble with the elevators on BART have a class action suit going on. "Class Action!", he shouts. He and some of his friends documented all the times they were left stranded without an elevator, leading to the suit being won. The result of the suit was that everyone who sent in a form stating that they had had a problem with this, could get a free BART pass. Also, if you are standing in a BART station you'll most likely hear an announcement about which elevators are working, or which ones are out of service. There is also a number you can dial to make sure the elevator is running at a station you are about to go to.

Walt is always proud to think he had something to do with that. He likes to think he's a helper. Sometimes he's hard to understand, and he can be very exasperating, but he really would like to make a difference. This new person he has become is one of those people riding around on a Lark cart with a red flag sticking up for safety. He could also be the person walking slowly in front of your car as your stop light turns green. Give him the time he needs and smile at him. Give him a little wave. He could be YOUR husband or father. He could be YOU. Think about it. He's on a mission ....to live his brave new life.

Walter Romer is living now (in 2015), at the California Veteran's Home, in Yountville, CA.  He still makes regular trips in his electric wheelchair by bus, BART and even the train. The folks at the Veteran's Home have gotten used to his comings and goings. He still has a good sense of direction.