Taking My Life Back Read online

  I went through a brief period of rehab at my doctor’s office, building up the amount of time my stump could tolerate the stresses of the prosthesis. I was told I would not be pronounced fit to continue on my own until I could run the length of the doctor’s office hallway, up and back. I started with a few steps at a time in each direction.

  So since my new leg and I would be spending so much time together, I decided she ought to have a name and dubbed her Felicia. Together, Felicia and I began our new tradition of matching pedicures. Then I put my newly emerging core muscle strength to work on lifting and supporting the motion of my fake leg, employing muscles to walk and move in ways I never used before.

  Today’s prostheses are impressive, but they are still not like the real thing. This means all of the other muscles involved in walking and in balance need to make up the difference. Stomach and side lifts, back raises, side step running—we did it all, and also what felt like every other motion the core muscles of the human torso could be put through.

  When the day came that I was able to run up and down the doctor’s office hallway with a measure of confidence and stability, the rehabilitation officially ended. After that, it was my trainer and me at the gym. This man became such a powerful influence on my physical recovery that the whole workout program and its screaming difficulty did more than whip me into condition. It lifted my morale around the clock.

  We all know the worst thing about life-changing decisions is the anticipation of all the risks. Once the decision is made and we can begin dealing with putting things back together, things may still be difficult but our worst fears usually sink back into the depths and we can cope after that. I began to feel that effect kick in.

  Outside of the training sessions, once I had named my prosthetic leg Felicia and saw to it that her pedicure matched my other foot, I began to build up the amount of time I could tolerate the friction of the prosthesis against what remained of my leg. In spite of the difficulties, my spirits were good because it was such a relief to have independent motion again, even if only for a couple of hours at a time.

  Noah loved seeing me fully upright again. I’m certain he saw how much it meant to me. He tuned right in to that and danced around radiating joy for both of us. Noah still likes to refer to me as his “robot mom.”

  With each new smile Noah and I exchange, both of us understand that we are only present together in this life because the worst shrapnel somehow missed us. And we will never for one second take that for granted.

  My trainer pushed me like a pile driver, just relentless, while never failing to make me feel supported. He had full compassion and respect for what Noah and I had gone through with the terrorist attacks, but as far as this business of living with one leg and a prosthesis was concerned, he didn’t want to hear a lot of whining. As a result, once my muscle fibers got through the shock of his workout attack, they began to tighten and build in response. With every workout I felt the strengthening process going on, and it was wonderful.

  How wonderful? We’ve all seen the shots of those gasping climbers who have just reached the peak of some great mountain. There they are, arms in the air, elated. The photo pulls us in; we can almost feel the freezing air they are breathing. Their victory is real, whether they survive the trip back down the mountain or not. They have pressed through every obstacle and risk and arrived to plant their flag.

  Oh, I felt all that. No exaggeration. After spending all those months in bed and taking thirty-seven different drugs for pain and infection, after weeks spent with my leg held above the level of my heart to keep a shift in blood pressure off the leg sutures, here we were.

  The process of getting in shape was a painful luxury. But when I made the final decision to amputate, I also made myself a promise that I would never let my disability define my ambitions. Even though I had only attended the 2013 Boston Marathon as a spectator, and in spite of my nonathletic past, I made a goal to return to Boston to run, and this became an important part of my new normal, a message to send myself. This was no time for a pity party; it was time to define myself as successful and recovered.

  So on top of getting myself back in shape for life out of bed and on my feet, I began training to run the next Boston Marathon. I was supposed to wear the new prosthesis for only about an hour at a time until my leg adjusted to it. Right or wrong, I skipped that part. For weeks, after my gym workouts, I would hang out at the mall and watch people walk, making myself copy their movements. I forced myself to take steps as if both my legs were still there instead of shifting my weight to the side with each step and taking stress off the amputated leg. I ignored the pain and focused on walking with a natural gait.

  Three months after the amputation, the limb was still painful and sore but I began jogging in short bursts around the gym and on the basketball court. I went through regimens of hop-and-skip exercises like those a football player or a boxer might use to gain strength, balance, and speed.

  The resulting swelling at the amputation site kept me going to the prosthetist’s office once or twice each week so they could adjust the fit to minimize my pain enough to keep me moving.

  My first one-mile test run was a killer. But I practiced tuning out the discomfort and kept increasing the distance day by day. Two weeks before the marathon, I managed a sixteen-mile day! Oh, it was glorious to feel all that ground, all that distance, churning away beneath my feet. The memory of every day spent in a prone position or lying on my side trying to find a position that hurt a little less drove me to push for greater distance. The helpless feeling of lying with my leg elevated, luxuriating in my five minutes of Dangle Time, was still strong in my mind. I loved the way that every single footstep seemed to strike back at that helpless feeling.

  I had no need to lose weight and I mostly like to eat healthy food anyway, so I didn’t really change my diet for the training. I did make an effort to be more disciplined about my food intake, but I confess I failed. Chocolate chip cookies have always been my weakness.

  My old problem with asthma returned, aggravated by all the gasping and panting. It was clear that I was starting from scratch after a year and a half in bed. I would exercise for one or two hours, then do another set of exercises at home in the evenings. The moves had to be adjusted to the prosthesis. For example, I can’t bend as much as before, since Felicia doesn’t respond as a real leg would. Balance is a constant challenge. In doing squats, the angles of my leg and foot have to be exact. To run, I have to think of how to place my leg on every step a millisecond before landing.

  Marathoners talk about “hitting the wall,” referring to a point of exhaustion that makes a runner feel so empty it can stop them as surely as running into a brick wall. I hit the wall on that sixteen-mile day, but it wasn’t me; it was my artificial leg.

  I was running on a prosthesis called a blade. It takes the pounding of the runner’s steps better because it uses its springy quality to propel you forward instead of using an ankle joint, which can be prone to failure from running long distances.

  But even the cushioned impacts of running on the ankleless blade failed to protect my leg stump from the beating I was giving it, and on that sixteen-mile day my suture scars broke open inside the socket of the leg. This was a major setback. Running a marathon in that condition was out.

  With only fourteen days left to go, there was no way to recover in time to make the whole run. Still, I felt that there were people who needed to see me do this, and I needed it for myself as well. Since it had been about 3.2 months since I had gotten the prosthesis, I picked a distance of 3.2 miles and asked the race officials if I could be allowed to run those final miles of the race. People have tried to jump into the final miles of the race before and risked being caught and disgraced. But the officials very kindly said it would be okay for me to do that.

  So my trainer became Super Trainer by deciding to go to Boston and run alongside me, to be sure my morale stayed high and my determination did not falter. You see how lucky I was
to have found a trainer like this, don’t you? What a gift to be on the receiving end of such kind support.

  So we did it, and on race day, at 3.2 miles from the finish line, we stepped into the flowing crowd and began to run. By that point I already knew from experience that there is terrible pain and there is good pain. Every athlete knows what I mean when I say “good pain,” and it’s certainly not that the pain is a pleasant experience. It means that the pain is at a level you can tolerate and hurts less because you bring it on yourself out of choice. You know the pain represents the long-term benefit of working out and growing stronger, of building endurance.

  I was running on a partial leg that should have had a lot more healing time before I set out to do this. It was hard but the pain was acceptable under the circumstances. My mom and dad, my sister Allie, my nurses Tracy and Naomi, and a whole group of wonderfully supportive friends, were at the finish line to see if I could make it. I couldn’t let them down. It isn’t that I thought anyone would be upset with me if I failed; it was that I knew their loving-kindness was such that it would be painful for them if I collapsed, because their hearts were with me.

  But as I got close to the finish line I began to falter. The pain in my leg had built up steadily from the time we’d started out, and it felt as if I had gravel in the socket of the prosthetic leg that was grinding into me with every step. Once the pain reached that level, it quickly escalated. Soon the entire socket of the prosthesis felt as if it were lined with grit that was cutting away at my flesh.

  Everything disintegrated quickly after that. Even with the finish line in view, I became seriously concerned that I just wouldn’t be able to get that far. The fresh wound on my leg began to send out those same sensations of burning that I recalled so well from the day of the attacks.

  Now the finish line was only a hundred yards or so in the distance, and every step felt like a stab in the leg with an ice pick. I had worked so hard to walk and run without a limp, but now I was rolling to the side with every step as my body instinctively tried to ease the pain of each foot strike.

  The fear hit me then. It looked as if I was going to go down only a few yards from the finish line. My body was objecting to every move I made.

  It was bad enough to be unable to go the full distance, but the effect of failing even this truncated run would be devastating to my self-esteem. After all, I had announced publicly that I could complete this run, and to fail would call into question my strength and determination, something I could not imagine doing. No matter what the future might hold for me, I never had any doubt that without a clear sense of my own strength and a belief in my power of determination, I risked moving from being handicapped to being an invalid.

  Invalid is quite a word, isn’t it? It’s one of those words that makes me glad our population has become so much more sensitive about language and its effect on people. To be invalid, by implication, is to fail to be valid, and to not be valid is to be less than others. But this is a condition of the mind, not the body.

  That dire condition starts at the moment we accept the cruel or thoughtless things people say to us. As a strong woman, I could brush off the random cruelties of daily living, but if I allowed myself to become an invalid in my mind, those insults would land on fertile ground. The disintegration of my self-concept would begin. I would become a cripple.

  I kept running.

  I approached the finish line with a pronounced limp. It took everything I had to keep my left leg from buckling and dropping me to the pavement.

  My leg was fully on fire, but the end was so close that as long as I could make it move another step, I could not give up. I don’t even know where I got those last few hundred strides from, but I was certainly at the end of my rope.

  I fell as soon as I crossed the finish line and felt as though I didn’t have a single stride left in me.

  It was only a 3.2 mile run, far less than what so many others endured out there. But I felt a kindred spirit with those ultramarathoners who torture their bodies on hundred-mile runs through the desert. I’d reached the end in spite of all the difficulties, and the most important statement I made that day I made to myself. My purpose was to negate the disability that had been inflicted on me in a symbolic way.

  A woman named Alyssa got it, in spades. She found the group of nurses and family who waited for me at the finish line, and waited with them for hours just to see me cross it, and she was soaking wet and crying when I saw her. We just stood and hugged for the longest time.

  Not long after the race, she left her photo on my Facebook wall, along with a message:

  Rebekah, I know you don’t know me very well . . . [but if] April 15, 2013, changed your life in ways you could have never imagined, it also changed mine. I was going through a rough patch in life, nothing at all compared to what you and so many others faced that day. . . . You and all the other survivors touched me in ways I will never be able to express in words. . . . So to see you cross that finish line, Rebekah [two years after the 2013 Marathon], it was completely and utterly overwhelming. . . . I will forever think of you whenever I need to cross little finish lines of my own.

  This was a solid milestone for me and another reminder that my process of recovery and my way of trying to live a meaningful life were actually combining to make small but positive differences in the world.

  In Alabama a short time later, I was taking some time to meet people and take photos with them before speaking after dinner later that evening. A young woman approached me and earnestly told me she wanted to thank me for working to inspire people and that her mother was a new amputee who had just lost one of her legs as well. Unlike me, her mom was avoiding the use of an artificial leg, leaving her stuck in a wheelchair. She felt too self-conscious about her condition to leave the house much. But her daughter wanted to assure me that her mom would have come to see me that night if she could.

  You know how something can hit you so hard and so deep in your heart that it feels like you instantly gain about twenty or thirty pounds? Your flesh hangs heavy on your bones. Your energy supply dips. You realize that you’re way behind on your sitting down.

  That’s how it felt when I imagined allowing this woman to miss out, if this was where she wanted to be. So much of the trouble in her life was beyond my reach, but this one thing was something I could change for the better. I felt my heart speed up a little.

  I asked her how quickly she could get home, and she said it would take only ten minutes. This meant that ten minutes away a woman was struggling with finding her new normal just as I had struggled, and was still struggling, to find my own, battling inevitable depression over the loss of her old normal. I had no trouble imagining the social anxiety that kept this woman alone. I didn’t have to be told that she only hid at home because she felt lost.

  When I tried to imagine how my behavior and my attitude would have been affected if I had to go through my surgeries and long recovery without my support network, the heavy feeling got worse. This girl’s mother had suffered her accident and amputation only to return home to the task of mothering her daughter while recovering in the house alone. She was a living example of what I had been spared by the love of my family.

  So I asked this young woman to go back home and invite her mother to be my personal guest that evening, and in the meantime, I stayed and had a word with the organizers. It’s great to have a sold-out audience, but we all know there are always two more spots to be found.

  When the daughter returned with her reluctant mom for the evening’s event, the organizers squeezed in two more seats at a table for them. We had the chance to talk after dinner and, of course, both wound up in tears. I completely empathized with her feeling of being shamed by her new limitations. I gently but emphatically insisted that there can’t be any shame in random disasters, only in our reactions to them.

  I also insisted that her brave act that day in leaving the house and coming to see me, ignoring the urge to feel self-conscious and instead
embracing action, was a perfect model for her best response to this new normal of hers. I told her truthfully about my own struggles to define my new normal and to avoid having it defined for me by physical limitation. I let her know that I have to constantly seek ways to work around everything that was taken from me that day.

  Beyond that, I asked her to begin pushing herself to get out of the house, even for routine chores. And as for the future . . . I extended my prosthetic leg and introduced her to Felicia.

  The leg looks like the mechanical device that it is, with a normal-looking foot attached. I explained my practice of always keeping Felicia’s toenails painted to match my real ones, and it doesn’t make any difference to me that the leg is obviously fake. I want matching toenails, no apologies.

  As for the fact that I have rejected the use of a cosmetic artificial leg, even though they can make ones now that look almost like the real thing, I don’t like the idea of hiding my condition. To me, wearing the mechanical leg has a nice feeling of honesty.

  She got it. I actually saw the idea take hold with her. And I know she took it home and put it into play, in terms of what would work for her. I didn’t give her the will to act; I only pointed out a possible route. She was willing to dare to trust me because I could assure her from personal experience that this route could take her to a much more fulfilling and joyful experience of being alive.

  After all, she had already shown the desire to break out of her self-imposed jail cell by accepting my invitation and showing up with her daughter. All she needed, I was convinced, was a framework to hang the idea of succeeding on.

  My personal choice is to use audacity to confront fear. By audacity I don’t mean recklessness, such as starting kicking fights with two-legged people. Rather, I mean wearing a mechanical artificial leg with shorts and sandals (and matching nail polish, naturally) while out shopping on a warm summer day. Or any other day.