It’s a Long Story
The decision to share my story so publicly was not something I could do at first. My journey of “getting back up” was such a roller coaster that retelling it brought back the raw emotions of the darker days.
As the years went by I saw more and more people struggling with depression brought on by their loss of mobility, many of them wearing the same plastic brace I started with. I recognized myself in them and I remembered how desperately I had once wished to find someone, anyone, with foot drop who was able to reclaim their quality of life; at that time I needed proof that someone with my injuries had been fully restored and I wanted a role model with a “how-to” guide to bring me quickly back to my life. I never found that someone.
As I met more people living with foot drop it dawned on me: perhaps I could be that role model to help speed healing for others. So much of my journey to get back up was done the hard way yet all along the solutions had been so much closer than I ever knew. By sharing my experiences and the knowledge I gained along the way I might help someone else avoid the frustrations, setbacks and eventual depression that I went through.
So, 5 years after finding the brace that changed my life I felt the time was finally right for me to give something back. That’s when the Get Back UP Today campaign was born.
I was born in Marquette, MI in the Upper Peninsula where many of my relatives still live. I spent about 10 years “south” in Ann Arbor, MI before mom got her job as Associate Professor of Dance at UNC-Greensboro in the real south. Ever since then I’ve called Greensboro my home. Dad left Michigan about the same time for Washington, DC so my sisters and I have spent much time in the DC/Northern Virginia area too…I’d say it was our second home. I have 2 sisters, Maria and Becky. Maria is 1 year older than I, Becky 1 year younger. I have four parents: Mom (Anne) and step-dad (Bob) Dad (Dennis) and step-mom, Suzanne. I am married to husband (Jim), have two step-kids who are now grown (Kristen and Jason), daughter-in-law (Kassie) and 2 granddaughters (Rowen and Summer).
Since I was a child, I was involved in many sports, including swimming, gymnastics, tennis, and soccer. By high school I had one favorite, soccer, and to keep myself in shape for that I took up cross-country and track. I had many other interests in life but I felt most alive during physical activity and loved the relationships I forged with my teammates.
After college, I turned my focus to distance running and ran my first marathon in Chicago of 2001. My finishing time qualified me for the Boston Marathon, which I ran in 2002 and 2003. I had fallen in love with endurance sports, adding Triathlons to my list of favorite events.
Throughout my life I had always suffered back pain. Sometimes it was hardly noticeable but on a few rare occasions it was so bad that I could hardly move. I was somewhat habituated to this pain and rarely made a big deal of it because I thought it was “normal”. I thought everyone lived as I did, after all you cannot go anywhere in America without seeing a sign or commercial for “Back Pain Specialists”.
However, one spring evening, in 2004, the pain intensified to an unbearable peak and I collapsed on my kitchen floor. Later, the neurosurgeon who operated on me described “a perfect storm” of birth defects, including spina bifida occulta, spondylolisthesis, conjoined nerve roots, and ruptured L3-L4/L4-L5 discs. These defects had been slowly converging over time until finally, my spine could no longer support me. Doctors discovered five inches of my lumbar spine where the spinal column never properly closed, something not diagnosed in my previous 38 years of life. In addition to performing discectomies, the neurosurgeon implanted Ray cages, rods, and screws and fused the vertebrae from L3 to S1 in my lower back. The surgery took over eight hours to perform.
I experienced some leg weakness prior to surgery but afterwards I could hardly feel my left leg. Doctors said it might resolve over the next year but in the meantime I was fitted with a custom-fabricated Ankle Foot Orthosis (AFO) to keep me from tripping—I was told I now had “foot drop”.
During the six months following surgery, I focused on learning to walk again, first with a walker, then a cane, and finally just with the AFO. When my back finally healed enough for more intense exercise, I began to dream about returning to the activity I loved—running. I was delighted when my neurosurgeon said it was fine to run again if my leg got better. At this point I fully believed that my foot drop would disappear altogether because my thigh muscles were regaining full function.
After 18 months with no signs of improvement in my lower leg, a sad reality began to set in: I was never going to regain the function of my shin muscles, my ankle or my toes. I would have to wear that “ski boot” (my plastic AFO) for the rest of my life, and most likely I would never run again.
When you stop being able to do the activities that have meaning for you–the very pursuits that helped shape who you are–you find yourself profoundly lost. The world I had known all my life suddenly seem wildly unrecognizable. I tried to focus on all the great things around me: my family, my career and my friends. I truly had so much going for me and in my heart I knew that so many people were way worse off than I. I told myself, “I should be able to get over this.” Yet, without realizing it I was slipping deeper into a depression over the loss of my identity, grieving the activities that had once made me feel so alive.**
With more dark moments than I care to recall, a turning point came one day in Baltimore. I was walking to my sister’s house on a beautiful fall morning when I came upon two runners heading in my direction. I tried to quiet my feelings of envy—I so wished I could be running too—and as runners do, I put up a hand and gave a friendly wave. Rather than smile and wave back, they just stared at me as they ran by. It hit me like a Mack truck: they didn’t recognize me as ‘one of them’, I was just some woman with an odd gait and a curious, clunky brace. When I saw my sister I immediately broke down sobbing, telling her I was no longer Beth, I felt I had totally lost my identity and I didn’t know how to find myself again.
The breakthrough came when she began to cry as well. For the first time she told me how sad she was for me—she and I had been regular running partners so she understood how much I missed it. She felt helpless because she couldn’t do anything for me. I could see how much pain she had been in simply because someone she loved was in pain.
To know the hurt I was causing my family was actually sobering; I knew I couldn’t give up. That’s the moment I resolved to find a way to get my life back. It took many more anxious months (a story for a later time) but finally I found Allard and the ToeOFF® brace—total game changer!
Just six months after getting my brace, I was once again standing at the starting line of the Chicago marathon. I broke down in tears and the runner next to me asked if I was okay. As I tried to process everything I was feeling I was only able to tell her, “It’s a long story.”
My sister met me at that finish line, as she had for my very first marathon. When I got to her she gave me the biggest hug of my life and said something that has stayed with me ever since: “Now I know that I don’t have to worry about you anymore.”
I’ve now run many races since receiving my Allard brace (including three more Boston Marathons) but these days I do it in hopes of helping other people get connected with the right technology and the right resources. The best part of this journey is that I finally met those role models I was seeking—and I’m meeting more of you every day!! It’s so wonderful to know we’re not alone in our efforts to Get Back UP and I’m grateful to each and every one of you who joins us in this movement.
You’ll read so many inspiring stories on GetBackUPToday.com. People are sharing their most daunting challenges while revealing a mighty will to not give in or give up. Some of these stories come from elite athletes, some from “weekend warriors” and some are from people in a struggle just to remain ambulatory. You may find accounts from people whose challenge may not even be visible to anyone else: depression, mental illness, chronic disease, etc. My point is this: EVERY STORY MATTERS. I’ve had people tell me that they feel guilty sharing their story because so many more people are worse off than they are. Others tell me that they feel less than because they’re not running, cycling, winning races or doing anything of great importance and to that I say this: EVERY STORY MATTERS.
It is my belief that pain has no perspective. If you’re in pain—whatever that loss is to you—it doesn’t make any difference whether someone else is in more or less pain than you. Pain is pain, loss is loss, fear is fear if it’s real to you. I can almost guarantee that no matter who you are, someone will be worse off than you and someone else better off. I can also say that your story will resonate strongly with at least one other person on this planet because all of us are on a continual journey of falling down and getting back up. OUR STORIES MATTER.
“Fall seven times, get up eight.”