I became a T11-12, incomplete paraplegic on November 17, 2004 following the birth of my youngest son. A rare complication that occurred after receiving the epidural took the life I knew and turn it into a living nightmare. The physical and financial consequences of this new life were devastating. These consequences, however, paled in comparison to the emotional wreckage that accompanied such a traumatic injury. The fallout still haunts me to this day.
My situation was further complicated by its rarity, and my doctors were at a complete loss as to what might have gone wrong. Since my injury, I know of only one other woman who suffered a similar injury at a hospital on the East Coast. My condition was classified as “nerve damage” to the spinal cord, resulting in paralysis. This diagnosis didn’t convey the idea that my situation was permanent, and I was told nerves would regenerate, and I could regain some function. The dream of walking again became an obsession I relentlessly pursued for the next 10 years.
From the very beginning of my injury, my focus became proving to everyone that I was exactly the same person I had been when I was able-bodied. I was not disabled, I was recovering from a temporary, mobility issue. I was an active mother of seven, running a full-time educational consulting business, and I had a life to lead. I led every committee I volunteered with, and I was determined to continue our schedule as usual.
Following a lesson on catheters and bowel programs, I was discharged from the hospital. The doctors decided it was best for me to focus on nerve damage treatments and attend rehab as an outpatient. We arranged to have a wheelchair delivered to us, and my husband carried me home to face our new world.
There were countless surgeries, clinical trials, alternative medicines, and visits to specialists all over the country in the next few years. I weaved these appointments into my daily life, always remembering to let my family know that I would be “normal” again soon. Life settled into a rhythm of preparing for, or recovering from, the next miracle cure.
As the months and years passed, I slowly began to notice an attitude change within my family about my disability. It would become most apparent when a doctor or therapist would suggest becoming involved with the local disability community. My husband’s response was always the same, “That is not our world, my wife is recovering, and we won’t need any group to help us.” This response sent a clear message to me that my disability wasn’t going to be part of our world. It wasn’t exactly hostile, however, to him it was a statement of fact. It was his own inability to face what “his” life would look like with a disabled wife.
I felt like a burden from the moment I learned I was paralyzed, and now, my deepest fears were confirmed. If I was permanently disabled, I felt like I was no longer part of my family’s world. At times, the idea of being part of the disabled community was enticing to me, but, because I felt like I had to maintain my non-disabled mother and wife status, I never reached out to anyone. As I approached my 10th anniversary, my internal turmoil reached a critical point. I was deeply depressed, coupled with a digestive disorder that would limit even more mobility, I felt as though I didn’t belong in my world, and yet I didn’t belong in the disabled world either. I completely lost my identity, and my life became mostly about being a minimal disturbance to my family.
Despite the attitude my family showed towards my disability, they were tremendously supportive during all of my surgeries and rehabilitation. They encouraged me when I had nothing left, and my husband was, and continues to be, my tireless advocate on all fronts. He has drained our bank accounts, sold our investment properties, and never stops looking for ways to make my life easier. In addition, my husband has shouldered the care-taking responsibilities for both my children and myself during all of my surgeries and recoveries.
I acknowledge that my own attitude shares responsibility for the feelings my family has about my disability. I was the one who denied any support in the beginning, and it was me who waited too long to reach out for help beyond my family. I made it clear that I didn’t accept my paralysis as a permanent part of my life, and I shied away from anything that looked like resigning myself to a long life in the chair. However, my resolve was wavering, and the emotional toll was beginning to overwhelm me.
In December of 2016, a social worker invited me to a Christmas party at the local rehab center. I was reluctant, yet something inside urged me to attend. I was profoundly depressed and hopeless at the time, and I thought maybe it was time to be brave enough to reach out for help. When I arrived at the party, I met Andrew, the founder of the Triumph Foundation, an organization that provides support and resources for the California disabled community. When Andrew asked me how long I had been injured, assuming I was new to the group, I burst into tears. 12 years of physical and emotional trauma poured out of me, and I was mortified.
Andrew looked at me with the kindest eyes and said, “Welcome.” The pain I was carrying due to straddling both worlds began to lift, and I felt an overwhelming sense of relief. I looked around at a group of people living active and exciting lives. They were happy and outgoing, and soon, I had a whole list of resources and events that I too could get involved with. I had found my tribe, and I finally belonged somewhere.
Following the Christmas party, I pursued a life in this new world as vigorously as I had pursued a cure for so many years. I attended support groups, tried new adaptive sports, and was even asked to become an ambassador for the Triumph Foundation. I was discovering new things each day, and I had hope for a brighter future for my family and I.
However, at home, tensions were rising. My family was confused by my sudden acceptance of living as a disabled person and chose not to participate in many of the things I was doing. My family perceived my new life as a sign that I was “giving up” on my dream of walking one day. Once again, I was caught between two worlds. I loved my new life, but I couldn’t pursue it at the expense of my family’s well-being. I reluctantly pulled back from my activities, and things at home returned to normal.
This decision had a tremendous impact on my life, and over time, I became depressed and resentful. I always wrestled with what I wanted for myself versus what I should do as a wife and mother. I acknowledged that to my family, my chair symbolized dreams destroyed, and a life that looked nothing like the one we’d imagined.
For many people in wheelchairs, their chair signifies survival from a horrific accident or injury. I see people posting inspiring stories on their injury anniversaries about how empowered they’ve become through their survival. Each year on my anniversary, we focus on my son’s birthday and pretend everything is normal. There is no talk about the darkness that crept into our lives on that day long ago.
I began to edit my own thoughts about what had happened to me. I discovered that some of my own ideas directly resulted in the perception I had of myself, as well as the impression I was giving to my family. The words burden, inconvenient, stressful, and “life wrecker” were part of my regular self-talk. I no longer had a voice, and I had no idea who I was anymore. I had been using a chair for over 12 years, and I felt like I was back at day one.
Recently, a friend helped me realize I desperately needed to focus on what I wanted for my life. Most importantly, I needed to see the strong, confident woman I’d become despite my disability. When I looked at my accomplishments over the last 14 years, I was deeply humbled by what I had endured. I began to feel a spark burn within me, and the strength to find my voice again.
Through the support of my disabled community, I cautiously ventured out and started participating in community events again. I began writing for online disability magazines and blogs, I’ve been paddle boarding, taking yoga classes, and making new friends. This past summer, I even finished flight school at Purdue University, becoming a licensed sport pilot.
I’m still trying to find the right balance, and at times, I feel guilty for pursuing this new life and spending time away from home. I’ve become better at self-care and allowing myself to have new experiences. I’ve reached a point of confidence where I can now fight for what I want. It’s a new and exciting feeling. It’s been a long time since I’ve seen myself the way I do now, and I’m never giving it up. I have faith that my family will soon follow and support me wholeheartedly into all my new adventures. Until then, I have a large and vibrant community that does.