Let's Talk In Here

“Let’s talk in here.”

Those four words. Oh god, how much dread they hold. I’m sure we’ve all heard them at some point during the diagnosis process. Most of us hear it right at the start.

I remember the moment that I heard them. The feeling of being dumped straight into ice water. I was 16, sitting in waiting room after an MRI with my Mum. Waiting rooms weren’t foreign to my family. I have a genetic disorder and had lived about half of my life in hospitals up to that point.

~~~~~

For about 6 months before the MRI I’d been sick. Sleeping 18 to 20 hours a day, severe headaches that felt like a fire poker was splitting my skull, falls, weakness in my extremities, narcolepsy, tingling in my hands and feet, vision problems. I had to leave high school because I was falling asleep, well, everywhere. For months there were no answers. Worsening symptoms also affected my mental health.

Finally a doctor who knew my history came back from holidays, examined me, really listened (how often does that happen?) and saw the affect that this mystery illness was having.

He didn’t have the answers. He wasn’t afraid to say “I don’t know.” He did however know it looked and sounded neurological in nature so he sent me for an MRI. That was the turning point towards a diagnosis.

~~~~~

The MRI was easy. Nowadays I almost sleep through them.

“Please go back to the waiting room and we’ll call the doctor down to check the scans.” That should have been my first indication something was wrong. My Mum was ready to leave when I walked back out. “We have to wait, sorry.” Her face fell. So did my stomach.

Then the doctor came through and said “Let’s talk in here.” My legs turned to jelly. I wanted to throw up. I needed to listen. I needed to know what was happening. We went into a consult room smaller than a shoe box with 4 chairs and a big round table crammed in.

“You have Chiari Malformation.”

My brain ticked over and stalled. “What does that mean for me? What is it?”

They started laying out all my symptoms. I stopped them. “I know how it’s affecting me now. What do we do to stop it?”

“You need brain surgery.” I didn’t hear much after that. “…Decompression” “…Not a cure.”

My brain went from stalled to spinning at full speed. I couldn’t get many words out. I remember them saying I needed to come back ASAP for surgery.

I had forgot Mum had been sitting next to me until she tapped me on the arm and started gathering her things.

We walked out to the front of the hospital and I looked at Mum. She had been cigarette free for over a decade. I knew she needed time, space and a smoke.

“Mum, I’ll make you a deal. You can smoke if I can swear.”

We shook on it.

“Fuck!”