‘I’ve Customized My Life’
A paralyzed businessman reflects on the risks and rewards of an eventual cure.
Fifteen years ago, Torsten Gross suffered a severe spinal-cord injury in a diving accident in the Bahamas. He is paralyzed from the chest down. Today, at age 30, Gross is founder and CEO of Fatbaby Innovation, a consultancy group that designs new products and services for Fortune 500 companies. He also produced Reeve Rocks, a rock-concert fundraiser to benefit the Christopher and Dana Reeve Foundation, with his friend Matt Reeve, Chris Reeve's oldest son. The show took place at Le Poisson Rouge in New York City this summer. NEWSWEEK's Claudia Kalb talked with Gross about the search for a cure. Excerpts:
What are your thoughts about using stem cells to treat spinal-cord injuries? Will you be keeping tabs on the research?
Yes. I would assume that most people are going to say, "at least I can try this." But my first thought is, "What are the ramifications?" My fear is that a new treatment is going to screw me up if I take it. If you do and there's a cure later, you might not be able to take advantage of it. That scares the s--t out of me. After 15 year of being in a chair, I'm going to wait until I know there's something conclusive.
Do you remember what it felt like to have movement in your legs?
I can tell you exactly how to kick a soccer ball. But everybody grows out of things. You always move on from one sport to another. I've replaced soccer with skiing and biking. Do I miss soccer? No, I've learned that everything is a phase. You get into a new phase and do things that make you just as happy.
How are you feeling physically today? And how does that affect your interest in new treatments?
I am fortunate to have the function I do. But I also have adapted very well. A lot of people see their lives as incredibly challenging just because of the chair. The chair is there, but it's not going to stop me. I make the best out of it. I've customized my life to it. I'll keep plugging along until there is a cure, but I'm not going to wait for that cure to come.
What do you envision when you hear the word "cure?"
It all boils down to what does cure mean? For me personally, a cure doesn't mean happiness. It means walking, which would make life a lot easier physically for me and the people around me. I'm pretty damn happy right now. I have found the perfect woman. I love my work life and what I do. I have no problem getting around anywhere. A lot of people call me on that. If there really is a cure, they say, am I going to be the one who says no? I don't think I'll say no, but I don't need to jump on every single trial that comes my way.
If there were truly a cure, you'd want it?
Yes, I'd want it. But there are a couple of factors. How old am I? And how many more years of walking would I have? Also, I would assume that because of the atrophy in my legs, there is certain amount of recovery period, probably a few years. If life goes according to my plan, I'm not going to have a year to two years to stop working. I'm busy, I travel a lot. Do I want to give up my business for something like that? So, the question is, when is it coming and what's the [recuperation] time? And what does cure mean? Does "cure" mean more finger function? Your bowels back? Walking up a step, running up a flight of steps or playing lacrosse again? The definition of cure is variable.
Wouldn't small improvements make your life easier?
Would it be easier to have two hands that were 100 percent strong so I could open a jar more easily? Yes, that would certainly make my life a tremendous amount easier. That said, I've been able to deal with it. I use a little rubber thing to open that jar. I don't even think about it, I do it. It's risk versus reward. How much do I need to go through in order just to get my hands back? If I have to go through hell and back to get my finger function back, I don't know if I'd do it. The risk has to equal the reward or be less than the reward.
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Claudia Kalb, who writes health and medical stories for the magazine, was named senior writer in December 2004. Kalb has reported on a wide range of medical and scientific issues, including stem cells, autism, reproductive medicine, HIV/AIDS and childhood obesity. Her cover stories for the magazine include “Kids and the Growing Food Allergy Threat” (October 2007); “Girl or Boy? Now You can Choose. But Should You?” (January 2004), which won a Front Page Award from the Newswomen’s Club of New York; and “SARS: What You Need to Know, The New Age of Epidemics” (May 2003). Kalb’s story “Battling a Black Epidemic” was featured in Newsweek’s special report, “AIDS at 25” (May 2006), which was a National Magazine Award finalist in 2007.
Kalb had been a general editor in New York since 1999 and a correspondent in the Boston bureau since 1996, where she covered medicine, politics, education, and family and social issues.
Prior to joining Newsweek in 1994, Kalb worked as a researcher and reporter at the Freedom Forum Media Studies Center in New York, where she researched books, including Dictatorship of Virtue by then New York Times writer Richard Bernstein and Den of Lions by former Lebanon hostage Terry Anderson.
Kalb was awarded a Casey fellowship at the Casey Journalism Center for Children and Families (June 1998), a Knight mini-fellowship at the Knight Science Journalism Fellowships at MIT (December 1999) and a John S. Knight Fellowship at Stanford University for the academic year 2001-2002.
Kalb received her B.A. and graduated magna cum laude from Amherst College before earning her Master’s degree in international affairs from Columbia University. She works in Newsweek’s Washington bureau.
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