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!”

Couch Days

This view is an all too familiar one: blankets, pillows, TV, coffee table. It’s what I see from my couch every day. That’s what a lot of us have resigned ourselves to seeing day in, day out. Needing to rest more is an unfortunate reality of many chronic illnesses.

~~

6 years ago I was where I didn’t want to be: staring down two brain surgeries. After the second one I woke with complete right side paralysis. At that point I knew things were really going to change. It took intensive rehab to get my fine motor skills back and to learn to walk again.

Today I’m living with my girlfriend, building a support network of friends, family and Dr’s. Trying my best to build a life for myself, even if it wasn’t what I thought it would be. I thought that would include study at a community college but I had to drop out due to a horrendous flare that lasted a month. Now I’m chasing a new diagnosis of Fibro, along with trying to balance my other illnesses. This isn’t where I thought my life was heading 10 years ago.

But most days I’m on the couch. I have my favorite pillows and blankets. I’ve also figured out the correct distance between the couch and coffee table so I can set dishes down when it’s too painful to sit up and do so. Most days my dog will join me on the couch too. She has learnt to do deep pressure therapy without me having to teach her, so we spend up to 30 mins a day on the couch with Cas laying down my torso, applying pressure where its most needed. It’s becoming part of our routine. I have to admit the warmth and snuggles help so much.

There is only so much Netflix I can watch before my brain shuts off, so I’ve taken to storing a basket under the coffee table with needlework supplies so I can craft lying down. This helps immensely. Crafting gives me a productive outlet for those days I’m stuck on the couch. I also read a lot. I could build a coffee table and possibly an eight seater dining setting out of my To Be Read pile.

Okay, that may not be your thing. You may be a reader, a gamer, a cook, a writer. Please do not let what you enjoy go stagnant while you find your way through chronic illness. Let that be the thing that brings you a sense of normality. We need to be able to hold on to those small joys where we can.