My battle with anxiety began when our car flipped three times across an Ohio field. At the hospital, a doctor told us our youngest daughter Beth was paralyzed. We had no clue what that involved. Not walking felt like the worst possible tragedy all by itself.
Then, other problems steadily marched onto the scene. Shattered neck bones, surgeries, infections, impaired organs, and fragile health. At fourteen years old, Beth changed from an active volleyball player to a teenager with a C6-7 spinal cord injury and a high risk for health issues, including deadly ones.
Fears after a child is injured can be overwhelming. A very uncertain future loomed ahead. Beth and I approached challenges in different ways. Despite her quadriplegia, she somehow tapped into a deep well of gratitude—thankful to be alive and for the abilities to breathe on her own and to move her arms.
I had been a disability advocate long before her injury, yet I couldn’t see clearly. I felt defeated by anxiety. The power of perspective eluded me. My fears grew. I felt stuck in a world without hope. Small tasks seemed like high hurdles. I couldn’t begin to share my feelings, accept her injury, or find ways to cope.
My biggest fear was losing Beth. A worry that didn’t abate as the initial weeks came and went. I obsessed over health risks. Every day in the hospital raised concerns. On the worst days, I struggled to function and questioned my sanity. I scrambled to learn all I could about quadriplegia. Knowledge is power, though it can be sad, too.
Would her body build up a resistance to antibiotics until they stopped working? I heard about a young man who died of autonomic dysreflexia on the way to the hospital. And a woman who lost both legs and part of her trunk because of infected pressure sores. I needed to protect my daughter from so many things—a heavy responsibility as her caregiver.
I almost dropped Beth during my first tries with transfers in rehab. In my anxious state, I imagined head trauma and broken bones. Her first shower after the accident frightened me, even though a nurse assisted. Very weak at that time, Beth wanted to help, but moving shampoo on her head made her arms shake. I felt shaken, too, wondering how I could give her a shower by myself when she left the hospital.
Bringing Beth home unleashed new fears, without the 24/7 medical support. Did I know enough? Was I good enough? Would I miss something important? Would she be okay? Months later, I started counseling and shared my worries for the first time. I thought the psychologist would help me reason away my fears in a few sessions. It wasn’t that simple.
I should have reached out for help right after Beth’s injury. Bit by bit, Beth gained enough strength to push herself in a manual wheelchair and float across the rehab pool with her arms waving underwater. She fought and won many small battles, from writing her name, to putting her hair up in a ponytail (two years post injury), to achieving independence without an assistant (four years post injury). Her successes—after repeated failures—helped to reduce my fears. Maybe she really would be okay.
As a college student, Beth made the effort to prioritize sleep, swimming, and eating well. Good habits minimized her health risks. So much so, her visits to the doctor were very rare.
Weekly counseling for three years helped me develop basic strategies to alleviate my fears, including exercise, meditation, deep breathing, writing, and connecting with others.
Positive connections are always therapeutic. A top priority for me is quality time with family and good friends. I also volunteer with disability nonprofits and became a peer mentor with the Reeve Foundation to support other moms who are struggling after a child’s injury.
My favorite strategy is one simple question. When stress interrupts my day, I always ask myself: “What is the worst-case scenario?” After my daughter’s injury, I had jumped to the deadliest conclusions. Today, my worst-case scenarios are usually inconvenient or aggravating, not tragic. My worries about Beth gradually diminished over years, leaving me with only a minor concern about her tendency to overbook her time.
I lost many fights with fear before I won the battle. Now I continue to use the strategies, even though I know Beth is more than okay and my anxiety is gone. They help me stay positive and brighten my perspective. I’m grateful to live in a world full of hope.
QUESTION: What did you struggle with in your child’s quest for independence?
CHALLENGE: Consider the following quote by author Elizabeth Berg:
“There is love in holding and there is love in letting go” (The Year of Pleasures).
In 2000, Elizabeth Kolbe suffered a C6-7 spinal cord injury in a car accident with her mother, Cindy. With the help of her family and friends, Beth would go on to accomplish extraordinary things, from her small town in Ohio to Seattle, Harvard, Stanford, and around the world. Elizabeth earned 14 Paralympic American Records in swimming and was the first with a visible disability on the varsity Harvard College Women’s Swimming Team. Cindy writes about their adventures in her blog and upcoming book, Struggling with Serendipity, which will be released Spring 2019. Elizabeth works as a health policy lawyer in Washington, DC, and travels often with her fiancé. Watch this inspiring story of perseverance and perspective: Struggling with Serendipity (5 minute video).
Edited by Nollie Haws and Kimberly Price.
Image provided by the author.