When you’re faced with a medical diagnosis, or even the fear of a medical diagnosis, you get to spend a great deal of your time in a mysterious limbo. Waiting and waiting and waiting for results. For answers. You have tests. Tests. You can’t study for them. You can’t prepare. Your whole life hinges on the in-between space between wellness and illness. So you abandon rational reasoning when the odds don’t pan out. You have a rather rare condition. You are so very young for this condition. Hold the phone you guys, I got something rare as a young person? Doesn’t that just mean I’m ahead of my time?
Let’s be clear for a second here, I have a brain tumor (or the remnants of one – Herbert), I have what is apparently a CSF leak (Flo, Herbert’s more fluid and free spirited cousin), I have a great deal of pain, but I am not sick. I am not ill or unwell. I am capable. I am strong. I am brave. I am resilient. I am still here. I’m still me. I’m under this veneer or bitchy humor. I’m hovering right below the surface. I’m still here.
So, being a healthy person with a brain tumor, I find myself in this predicament of passing tests. Tests I cannot understand. Images that don’t speak to me. Words that fall meaningless on my heavy ears. And the worst part of all? They are images of me. Words about me. I cannot understand them. I can’t discern meaning. I’m a scholar and here I have no knowledge. I have very little insight into this. I know what my intuition says about my health. I knew Herbert was there all along. I just never knew how to say that. But what’s the answer? You take the tests, you get the results, but you don’t have answers.
One doctors tells me the CT is clear. A leak is clearly visible. Then he changes his mind. Another says the leak is unclear. Then he changes his mind. One says the nerves are dead. Another measures my hearing as it slowly tries to return. The nerve is not dead. One tells me Herbert has broken down. Another tells me the MRI is inconclusive. One tells me to wait and see. One tells me to act. One tells me to fight. One tells me the fight is won.
It’s conjecture. It’s inconclusive.
We take tests. We get results. We don’t ever get answers. That’s for us to decide.
We are active agents in our own lives.
We decide the answer.
I can’t control Herbert. I can’t control Flo (what a B). I can’t read charts or graphs or MRIs. I don’t want to research. I don’t want to know every miserable possible outcome. I won’t. I can just trust.
I can only trust the voice that wavers least.
Get the surgery, Dr. Wright (from Spetzler’s office) told me over the phone. It was clear. And his voice led way to mine. Strong, decisive. Conclusive.
I get surgery this Thursday (#braintumorthursday!) to repair my leak. Flo, your visit is coming to an end. Whatever happens, I found my voice and trusted it. Now, all I can do is hope I get a tan tomorrow in Arizona before I have to put that gown on and be exposed on an operating table again.
Our results will always be inconclusive, our answers won’t be. Here’s to taking a leap.
Peace and love –