Spinal cord damage can happen in a nanosecond. In 1995 Superman Christopher Reeve, a married dad of three, became paralyzed from the neck down iafter he fell head first off a horse and shattered vertebrae. (He died nine years later.)
For Alan T. Brown, the biological father of 14- and 9-year-old sons, the life-changing moment occurred during a Caribbean vacation a quarter century ago, when he was 20. The undertow pulled his legs out from under him, and he hit his head and snapped his neck.
Today Brown is the director of public impact at the Christopher & Dana Reeve Foundation, which raises money to speed up research and uses grants to improve the quality of the lives of people with disabilities. (About 5.6 million Americans live with paralysis brought on by conditions such as strokes and multiple sclerosis. Some 1.2 million of them have spinal-cord injuries.)
Brown is more than halfway to his Power of We Campaign goal of raising $250,000 ($10,000 for each of the 25 years since his accident). He talked with Family Goes Strong about physical disabilities and families. Excerpts:
What parts of your body can you move?
I can move my arms.
You mentioned you got married 18 years ago but are going through an amicable divorce. Does the end of your marriage have anything to do with your injury?
I think it does. This injury doesn't just affect the person in the chair. It affects everyone else around them. I think she [his wife] is a victim of paralysis. The everyday grind of trying to live like this was tough on her. This injury is a burden on people.
What about your kids?
It's the hardest thing to be a father in a wheelchair. I was very athletic before. A lot of things I want to do with my children I know I cannot do. There are just a lot of things that fall out of my control. My body and health dictate what I can do. I miss things. I was a hockey player. I played everything. My kids play everything.
What's your philosophy of life?
The motto of the foundation is, "Today's care. Tomorrow's cure." Christopher believed in a cure, and Dana believed in quality of life. I believe in both. You've got to live your life every day to the fullest.
What are your physical goals?
There are people who just want to stand up. I would rather get back some of my other functions — bowels, bladder, sweating, temperature control. When you become a quadriplegic, you don't sweat. I get overheated and dehydrated a lot. I have to catheterize.
What can families do to help friends and relatives with a disability like this one?
Band together, and be there for each other. In one split section, your life changes. It's not just the individual in the chair that gets hurt. It's the mother, the father, the sister, the children. It's really about reaching out to other people in the community. [The Reeve Foundation offers a resource center and a peer-mentoring program.] Not one spinal cord injury is the same. You might have a guy who does sweat or does have feeling."
How did you have biological kids?
That's the first question I asked the doctor. "Can I have kids?" My first child was completely natural. My second one, I did do in vitro because I was completely ill. Some people can, some people can't. It's the luck of the draw. Every injury is different.
These accident stories can make parents and grandparents reluctant to let their kids ride horses or go in the ocean. What should people do and not do?
Please wear seatbelts. Try to be smart about what you're doing. You can't predict a football injury or a water accident. Don't put yourself in harm's way. You want to try to be as safe as you can. But you can't not live your life. Just be careful.
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