1. What is GONE about and why did you write it?
GONE is the story of creating a normal life after losing both my legs above the knee and my right arm at the shoulder in a train accident when I was 29 years old.
Most memoirs I’ve read about overcoming trauma are written soon after the accident and deal with surviving the trauma and its immediate aftermath. Sadly, many spouses and friends disappear because they think staying with a severely injured person will be difficult. I want to show that when people stay and work together, they can far exceed their dreams and go on to have families, professional careers and travel the world.
Thirty-five years after the accident I was diagnosed with Parkinson’s Disease. All of a sudden, I met people who were learning to cope with a progressively degenerative disease. Some develop a tremor or bradykinesia, making it hard to use their hands. Some shuffle their feet or find it difficult to walk because of rigidity and stiffness. Many become depressed and anxious or feel useless as they become dependent on others.
I saw parallels between the sudden loss of the use of my arms and legs and the progressive disabling changes of Parkinson’s Disease. I started speaking at Parkinson’s meetings showing patients and their caregivers what Dave I have done despite me having only one hand and no legs. Things like having children, ten-day wilderness camping trips, river rafting, snow camping, being carried on my husband’s back in a backpack, or when all else fails, being pushed around in a wheelbarrow. I inundate them with my Get Out and Go message and encourage them to see humor in the parts of their life that are less than perfect.
A favorite way to end my talks is to show a video clip of me butt-walk racing with my personal fitness trainer. With her long legs sticking straight out in front of her and me sitting at her side with my short little amputated legs, she counts “3, 2, 1,” and off we go. People start to chuckle as she churns her arms and starts to rock forward while I wiggle and scoot right past her. Chuckles turn into laughter and finally there’s loud applause as I leave her in the dust. “If she can do, I can do it,” is the take-home message for the audience.
2. Did you ever become angry or bitter after the accident? How did you manage those emotions?
Yes, in the first few days after the accident I was angry, scared, bitter, resentful and devastated. These emotions vied with disbelief—it couldn’t be true that I was lying in a hospital bed looking at empty space where my legs and arm should be. By day number three, I was exhausted and realized I needed to make a decision. Was I going to use my energy to be happy or spend it all on being an angry victim? That night Dave held my hand in his two strong ones as we cried and talked about what happened on the railroad tracks. Then with a kiss, we made a pact that we kept for thirty-five years. (You will need to read my book to find out what that was.)
I wanted to laugh, and I wanted the people around me to start smiling instead of crying every time they saw me. So, I took charge whenever anyone entered my room by grinning, looking them in the eye, and cheerily saying, “Hi, how are you doing?” That simple question forced them to respond with something about themselves. I made sure everyone, including me, felt better when they left my hospital room than when they entered.
MAKE A PLAN
During that first week, my husband sat down with me and suggested we make a list of the important things in our lives. He made me do the writing as practice for learning to write with my left hand. The initial list had nine words on it: Personal, Rehabilitation, Professional, Social, Marital, Family, Psychological adjustment, Sports Activities, Desirable goals.
We talked about what I couldn’t do any more and then we agreed not to dwell on those things. For everything I couldn’t do, we tried doing it differently or we replaced it with something else. Within the next few days we expanded this list to specify how to accomplish our goals. The end result was that I went back to living by myself in Los Angeles one year later and finished my radiology residency. My new independence looked different and required help from other people but that was okay.
3. What advice would you have for anyone who has experienced an accident that resulted in chronic pain, depression, and feels worthless because they have lost their career, relationships, and/or sense of purpose?
First you have to recognize and admit that you have a problem. Once you’ve done that, quit fighting it and ACCEPT the reality of the situation. If it can’t be fixed, then you ADAPT and find ways to deal with it or work around it. And lastly, learn how to INNOVATE. Find new ways to do things. If necessary, let impossible things go and replace them with something else that will occupy your time and require your attention.
One of the best ways to ways to overcome loss is to look away from yourself and your problems. Get a job, find someone who needs help, make something. Helping others is a huge distraction from your own difficulties. The last thing you want is to find yourself doing nothing. That’s the most sure-fire way to fall into a deep hole that you may not be able to climb out of.
4. How did you manage the challenges of being married after the accident?
I think the biggest reason our marriage worked is that my husband took his commitment to me very seriously. The first time we saw each other in the ICU after the accident, I told him that I’d understand if he didn’t stick around. Without blinking he said, “I didn’t marry your arms and your legs. If you can do it, I can do it.”
As a young woman, it was hard for me to understand how he would ever see me as a sexy person again. After all, I looked pretty weird without my legs and an arm. One day he sat down and wrapped his arms around me. “Maybe this will help you understand. Put yourself in my place. What would you do if it had been me? Would you stick around? Or would you run away?” That thought was a game-changer for me. I couldn’t imagine leaving him so maybe he was serious when he said he’d never leave me either.
Dave and I have always had extra-large doses of independence as evidenced by the fact that we lived one hundred miles apart after medical school during our residency programs. We often joked it was the reason we stayed married. My sudden and absolute helplessness was devastating. When I awoke in the hospital after completion of the amputations, I could do nothing for myself…except breathe. For months, there were only two places I could be—in a bed, or in a wheelchair. I had to be picked up and put on a bedpan or carried to the bathroom. I needed help to eat. In dreamland at night, I had all my limbs. Every morning when I awoke, they were still missing.
The absence of my right arm at the shoulder and loss of both legs above the knees made me abjectly dependent. While I worked hard and learned new ways to do things, deep down I knew I’d be dependent on others for the rest of my life. It took years for me to develop what Dave calls “gracious dependency”—the act of tamping down my anger, accepting help, smiling and saying thank you. I was amazed to find that in accepting help from strangers, I was helping them feel good.
I thought about it incessantly at first, but he eventually convinced me that even though I was physically dependent on him, he was emotionally dependent on me. Each of us needed help. Eventually we let each other’s abilities or talents make us strong in those weak places. We learned how to tackle life together as a team.
MAKE THINGS FUN
Good marriages don’t just happen. You need to decide it’s the most important part of your life. And then you need to feed it. Make dates and put them on your calendar—just like you do for work or your social life. Get your parents or friends to babysit and spend a weekend once a year in a hotel in your own town. Lock your bedroom door occasionally. Dress attractively for each other. Touch each other nicely. Whisper sweet nothings.
This picture shows the extremes to which we often carry the whispering of sweet nothings—Dave carrying me in a pack on his back up the Yosemite Falls Trail with Half Dome in the background. Hikers coming toward us are taken aback as they see this two-headed hiker coming up or down the trail.
Dave won’t want me to say this, but I give him all the credit for our marriage because he worked and still works hard at it. If he tells me once a day, he tells me a dozen times a day that I’m beautiful, that he loves me, and that he can’t imagine living without me. How can I fail with someone like that!
5. How did you manage the challenges of being a parent and raising children after the accident?
I think the mental aspects of parenting and raising children are pretty much the same for able bodied parents as for families with a disabled parent. When I worried about our children growing up angry or embarrassed by my disability, my husband reminded me that all kids dislike their parents at some time. They think we are dinosaurs but that somewhere in their early twenties, we crawl out of our pre-historic cave and they actually like us for who we are.
I became pregnant with our first child nine months after the accident and I think it was a major reason my rehab went so well. I had learned to walk by then, but the slow weight gain of pregnancy made me stronger and more successful at walking than I might otherwise have been.
It was clear from the beginning that we would need childcare help even if I was a stay-at-home mom. I was more “able-bodied” at work than when at home cleaning house and chasing after our kids. In many respects, taking care of babies was easiest for me because I carried them on my lap in my wheelchair and was able to feed them, change diapers, bathe and dress them with only one hand. I pulled my weight by cooking, doing laundry, shopping and then chauffeuring as they got older. Dave did all things requiring two legs like running after the kids, playing with them and in general doing everything I couldn’t do.
Both Dave and I were athletic, outdoors people. I’d hiked Mt. Whitney twice, been down the Grand Canyon, and loved camping and backpacking. Dave loved playing basketball, football and baseball and was a marathon runner. Of all the things I lost after the accident, it was these outdoor activities I missed most and what we most wanted to do with our children.
Since we lived in San Diego, the beach became their playground as we took them there every week all year-round. Then when Tiffany was eight and Brian was five years old, we teamed up with friends from Montana for the first of many wilderness canoeing/kayaking trips to places like Yellowstone Lake, Boundary Waters and Quetico, the Missouri River, the Churchill River, and the Broken Group Islands in British Columbia. As our children grew older they realized these adventures were way above and beyond what any of their friends ever did. They were proof to everyone that it didn’t matter if you had a disabled parent. You could do anything.
7. Have you had any experiences of serendipity or synchronicity as a result of the accident? If so, what?
During the twenty years I was director of breast imaging at University of California, San Diego, I interpreted thousands of mammograms. Every day I dealt with women who were scared because they had cancer—or worried they might have cancer. As I walked carefully into the exam room with my cane, their head would turn slightly to look at me. Standing in front of them I’d see them look me up and down and then stop when they noticed I was missing my right arm. I’d wait for a second until they looked into my eyes. Even though they didn’t know what had happened to me, at that instant they knew I could understand their fear and were willing to trust me.