Expect the Unexpected
One minute I could make out fuzzy images moving around the ICU, and the next minute I was the one moving. What is happening? I demanded, but no one could hear me. I couldn’t talk …I couldn’t even move… and I was losing consciousness.
At age 9, I had a hemorrhagic stroke, a bleeding into brain tissue, and the result of a brain tumor. The tumor was growing into nerves surrounding the brain stem. A blood vessel had ruptured, and the time frame between onset of stroke and onset of treatment was closing fast. The next 90 minutes would be crucial in order to stop the bleeding and significantly reduce disability. It was within this time frame that I lost the childhood I had known, but I am eternally grateful for the life I gained.
For several months afterward, I could not talk — my only means of communication a spelling board. Regular speech therapy—first at the hospital and then at the children’s rehabilitation center—changed that, but progress was slow and there was a lot of frustration and anger.
There were little things I took for granted until they were gone. I had to learn everything again. I felt betrayed by my own body; my memory wiped clean. I couldn’t walk, talk, feed myself, or even roll over in bed without assistance. Between lengthy stays at the hospital of the University of Virginia and the children’s rehabilitation center, it took speech therapy, occupational therapy, recreational therapy, and several additional years of physical therapy to get me where I am today…a survivor.
For me the question was never “Will I walk again?” but rather “How soon before I get out of this wheelchair?” Persistence can go a long way, but I’d be lying if I said it wasn’t difficult. Now was the time to rebuild my life, to make use of the abilities I still had.
At that time, during the 1980s, medical technology was not as advanced as it is today, but the only option was surgery to remove the tumor growing into the delicate network of nerves and blood vessels that surrounded the brainstem. Mine was a surgery that would not have been possible 20 years earlier. If I survived, a 3 1/2-month ordeal would begin that would leave me struggling to make sense of the world.
It’s remarkable how the mind continues to function even when the body is barely functional. I knew my surroundings. Even as I lay helpless in the ICU, dependent on machines to monitor my heart rate and control my breathing, I knew I was there because of a brain tumor and the damage it had done. I just didn’t know how much damage.
How does a 9-year-old deal with the fact that she can no longer do ‘normal’ kid stuff, like participate in after-school activities, go to the mall with friends, or even go on trips without having to plan beforehand for handicap accessibility? How do you explain to a child that the rest of her life will be governed by nerve damage? At the time did anyone know?
I needed answers. I needed to connect with others dealing with the same issues.
Recovery is a long, hard road to travel and sometimes there is no pot of gold at the end of the rainbow, but when I focused on the abilities I still had (even if they were once taken for granted) only then did I no longer see myself as victim, but rather as a survivor.
With nerve damage and a severe balance problem, grade school was a challenge, but after high school I went on to college. I graduated with honors from Shenandoah University where, relying on assistance for balance, I walked across the stage at graduation to receive a Bachelor of Science degree, for which my efforts earned me a standing ovation.
Now, at age 45, I can still see that girl, limp and helpless in the ICU bed. Turning back the pages of time, how could I explain to someone else, especially a child, that her life will be forever changed? I’d tell her, “Never give up. You will face new challenges, even struggles, but your hard work will inspire other people, and show them what it means to be a survivor.”