By mid-September, I could carefully maneuver most places with a cane, albeit a bit tipsy on occasion. My legs still fought me over stairs, but I showed them who was boss with some fancy cane and rail-holding techniques. My mouth worked somewhat with what now could be mistaken for some sort of slow drawl (neither Southern nor charming, I should add). One of my lovely neighbors showed me how to hide my shining baldness with a bit of wiggery and creative scarf tying. When she finished with me, I looked like a Gypsy preparing to read the future.
I was ready!
I was more than ready to get back to my office with its fast-paced challenges. I could walk. I could talk. Certainly, I could manage sitting at a desk. I could do it.
But here’s what I couldn’t do:
- Count on a static, boring life from now on.
- Fix my eyes on any one star and claim it as my true north.
- Know all those future dimes on which my life could turn.
Every morning — when my eyes opened once again — I managed to locate the day’s pure possibility. Maybe I no longer jumped out of bed, but rather carefully positioned my legs, gently talking to them before asking them to stand and carry their load. Maybe I was more thoughtful before allowing my mouth to embarrass itself.
Maybe through the removal of 6.5 centimeters of brain tumor, I gained a 6.5 centimeter hole ready to be back-filled with whatever might become of this shiny new normal. There were new paths to walk, gentle words to let fall like petals along those paths. My goodness, I needed to occupy myself with the business of growing back a few wisps of stalwart hair.
Since July 6, 1994, everything that has issued forth has come from a dark roundness, slightly larger than a golf ball, deep in the bottom of my brain. Every step. Every word. Every action and every precedent thought. When I was still in the hospital, a friend said to me that I seemed a different person. I would agree. I am a different person; I’m now imbued with a certain knowledge that making something good out of something really bad isn’t a choice — it’s a necessity.
Understand, I never expected to have a brain tumor. I never thought I’d fall through that Wonderland of rabbit holes and nonsensical outcomes to end up fifteen years later still here. Five years ago, I was honored to serve on a Survivors’ Panel at the National Brain Tumor Association’s annual meeting. I attended one particular session given by a well-known doctor in the field of neurology. After mentioning that the average time between diagnosis and death for a brain tumor patient is eighteen months, he was asked by a shaken and frightened woman how he handled telling people they were going to die.
“I never tell anyone they’re going to die,” he said, pointing to me. “I always figure you’ll be the survivor, the one who will well outlast us all … and I treat you as such. Yes, the statistics sound grim, but every patient who walks into my office is my latest survivor.”
Now and then, I hear a miserly little voice that wants to convince me to feel bad because I was one who beat the odds. Survivor’s guilt, it’s called, and it’s a ridiculous waste of emotion. In my case, every lemon was squeezed into lemonade, but not necessarily by my own hand. My tumor was found. It was operable. I was fortunate to have a brilliant surgeon whose hands were not satisfied until every remnant of tumor was removed. I was lucky to be a paycheck-to-paycheck working girl just wanting to keep a roof over my head. Being not of means propelled me to get out of bed and work, work, work so I could get back to work, work, work. I had family, neighbors and friends who were selfless enough to look after me during those early days. I had colleagues who were generous enough to give me the time and money needed to get — literally — back on my feet.
Finally, I had a good stubborn Irish heritage that taught me to see beyond what could certainly be considered a blighted heap of disappointment and rather, keep digging for the “good potatoes.” If it was one twitch of a stubborn leg, I held on to it like a nugget of gold. If it was one intelligible word, one follicle of hair, one moment aside from the crushing fear that surrounds the word, “tumor,” I took it. I took every small thing I could.
The cumulative effect of any good moments, however small, eventually outnumbered the bad days. I was different, for certain, but that “shiny new normal” hasn’t been so bad at all. Here’s what it’s like for me now, fifteen years later:
- I no longer need wheels or sticks to get around. Instead, I have a grand “fuzzy cane” in the form of a Labradoodle named Wilson.
- I can converse with the best of ’em now — just ask my beleaguered husband — he’ll tell you so.
- I almost have some hair … almost.
- It took five years, but I can now close my eyes and bow my head without spinning out of my seat with dizziness.
- My imagination and curiosity have led me to a writing life of quiet pleasure.
- In some ways, I wish I’d had this type of “normal” all along — I could have skipped all those youthful indiscretions and not been like Annie singing It’s a Hard Knock Life at the top of my lungs.
- But then again, I wouldn’t change a hair on my little hairless head.
I’ll end this narrative now to resume my regularly-scheduled programming of zipping around from one topic to the next. That’s what my new brain does. It zips!
I’ll leave with this, however. Last evening, I attended a dinner to help raise money for a young single mom whose six year-old daughter is nearing her last days because of a brain tumor. Six years old! I have no good words for the brutality of that situation. I only know that some of us survive; some do not. And that shiny new normals sometimes seem neither shiny nor welcome, but rather, cruel and incomprehensible.
There is no sense to be made of tragic illness — either yours or that of someone else. I hold no answers. I don’t even know the questions. I only have an experience to tell and, with that, if anyone gained even a small hope from these twelve short posts, then yay! Hold on. Sometimes that Donna Summers I’m Gonna Live Forever song contains the only sense to be made of it all. I’m gonna learn how to fly, the song lyrics say.
So here’s a last thought: Do your best to learn to fly. If your wings break, fly in your thoughts. If your brain breaks, fly in your heart. If your heart fails, as eventually they all do, then let’s all meet up in that grand Somewhere Else where we can cheer each other on and EVERYONE can display their brand spanking, sparkling … Shiny New Normal.
Stay well, everyone.