I was suspended in mid-air, flying… until the back of my head hit the metal table, and the rest of my body crumpled to the floor. As I got up from the floor in the middle of the night, I realized my basiphobia (fear of falling) was increasing, but I had no choice – if I didn’t walk, I couldn’t live my life, right?
I was born with congenital cerebral palsy (CP), a disorder that limits mobility. I have always had physical limitations due to the right side of my body being weaker than my left. I am blessed to have incredibly supportive parents, who made sure that I had every advantage I could to become as independent as possible. Part of building this independence meant having regular physical, occupational and speech therapies while I was growing up. The good thing about CP is that it technically does not become worse as I age, but unfortunately there are other issues that can become a factor in adulthood. During graduate school, I noticed walking was more difficult for me than it had been as I was growing up. After several medical procedures, I ended up walking with a four-pronged cane, something I had never needed before.
Shortly after I graduated with my Master’s degree in Mental Health Counseling in December 2010, I married a wonderful man and we embarked on our new life together. I felt full of hope, with the normal newlywed ideals, while knowing that I was on my way to achieving my dream of becoming a Licensed Mental Health Counselor. But our first anniversary found me in the hospital, recovering from a shunt revision. A shunt is a device that sits in my skull and helps my brain drain its fluid down my spine correctly (due to my CP, my brain can’t do this on its own), which periodically needs to be replaced. I didn’t know it, but this was just the beginning of the role my disability would play in our relationship. At the time I was still walking with a cane, but it was becoming more and more difficult.
About a year after that, the night I hit the back of my head on a metal table (while attempting to go from our bed to the bathroom), I had what turned out to be a pivotal moment in my life. Shortly after this, it was discovered I had a spinal cord injury, at the very least exacerbated due to that fall, and I was told that if I fell again I could possibly face permanent paralysis. I had to use a wheelchair until surgery. I remember reading in bed, trying to not look at the chair next to the bed, but my gaze was always drawn back to it. I was terrified of what the chair represented to me: increased disability and loss of freedom.
In March of 2012, my spine was repaired, and everyone hoped that a major factor in my falls, called clonus (uncontrollable shaking of the hands and feet) would eventually dissipate as my spine healed and I resumed my quest to walk as independently as possible. Part of having CP is the issue of spasticity, or involuntary contracting and tension in my muscles, which I worked hard at controlling with my regular physical therapy appointments. A normal reaction to fear is having muscles tense up, in preparation to run away or fight the obstacle. But when I experienced this fear of falling, my CP actually added to the continued cycle – I would fall, which led to more feelings of fear, which caused my muscles to tense up, which was increased by the natural spasticity in my body, which could lead to more falls. I went through this period feeling as though an invisible monster was breathing on my neck, always waiting for my weakest moment to spring on me and shove me to the ground.
I don’t remember the date of the day I decided to alter my life permanently, but I do remember talking with my mom while tears coursed their way down my face. Through choked sobs I told her I was sick of trying to walk while always being afraid of plunging to the ground. I knew that she and many others had prayed for my full recovery, hoping I would achieve the independence I had held even a few years before this. But it was becoming more and more obvious to me that what was worse than my perceived loss of independence while being in a wheelchair was the sense of constant fear that at any moment I could fall and experience pain and possible traumatic injury.
I knew I was choosing what I believed was better for my physical and mental health, but it still held a faint stench of failure and the unknown. I had never had to explicitly face the question: what does it mean to be a person who ambulates by wheelchair? I can only answer that question by my continued experience, and say: I’m still finding out what it means. I literally look at the world differently – my line of sight is often level with small children’s, and it’s easy to “get lost” among shelves and racks in crowded department stores, because they are set higher than my head. I plan most activities with the preliminary question: how wheelchair accessible is it?
Unfortunately, even with the Americans with Disabilities Act, I’m discovering that accessibility actually runs on a continuum, from easily accessible to downright impassible. What I took for granted before all of this, such as being able to get up on a curb without aid or open a door for myself, has now become something I have to look out for and consider in almost every new activity. But while I am discovering some new limitations, I also know this choice I made has handed me wings, enabling me to fly to heights I hadn’t thought about before.
My empathy for people who have experienced traumatic pain in their lives has increased significantly. Considering that my chosen profession of being a licensed therapist in New York State is largely dependent upon my ability to empathize and work with people in difficult situations, this has been a priceless gift. While each person’s pain is unique to their experience and perception, we all share common emotions, and I know my history of physical and emotional pain has enabled me to come alongside others and be a listening ear and a possible resource for how to learn to stand tall in spite of (or because of) disabling pain and grief.
The choice I started to make years ago to use a wheelchair echoes in every area of my life. It has given me a role I never thought I could see the good in: because I am in a chair others may look at me differently, and I have the gift of deciding how I would like to respond at any given moment. If I am the only person with disabilities they interact with for that day, I want to make a positive impression, because of what I am able to give. I have found that sometimes the simplest of interactions, from eye contact and a smile to a passing greeting, can make a difference in others’ days and my own.
My basiphobia, the monster that lived with me for years, has not completely left my life, and maybe it never will. But while I know it is still there in the back of my consciousness, I have learned the secret of living life in spite of my fear. I see this most clearly when I embrace my parents, kiss my husband, or see the smiles of kids I work with every week. When I focus on the little things that make up my life, I am drawn away from what I can’t do to what I can. Had it not been for that night when I hit the back of my head as I fell, I may not have made the eventual decision to alter my life in such a significant way. I did not know it then, but that fall handed me a gift of seeing life from a new height and perspective. I would not have it any other way.
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