Balance Problems

I lose my balance hundreds of times per day while I stand.

First, my toes rise, then the balls of my feet as I start falling backward. Then I curl my toes and drive them into the floor while pulling my body forward using my back muscles to right myself. Yes, when I'm standing, this entire process happens probably about ten times per minute. It's exhausting. It overworks my body and gives me pain. It distracts me from everything. It's unnerving to constantly feel myself falling.

The Support of a Walking Cane

Today I tried out my new walking cane in public for the first time. It wasn't nearly as awkward or nerve wracking as I thought it would be. I think this is because I needed it. I still lost my balance a bunch of times of course, but with the cane it was less of a strain.

I bought the cane last week. During my annual check-up with my neurosurgeon, he told me to consider that the worsened symptoms of my Dandy Walker Syndrome may never improve. I wasn't devastated. I had suspected this for over two years.

25 Years of an Amazing Shunt

Tonight I am having a little internal celebration. I have reached a remarkable anniversary in my life. For 25 years now, a tube in my body called a shunt, implanted in my body to treat a neurological condition, has worked perfectly. It's never become infected, never broken, never became dislodged and I didn't outgrow it.

Before I was born, I was diagnosed with a cerebellum defect called Dandy Walker Variant. Basically, my cerebellum didn't fully form; there is a cyst in the space where the rest of my cerebellum should be; the fourth ventricle of my brain was a little dilated and a brain membrane called the septum pellucidum never formed at all.

The defect itself is medically inconsequential for me, but it caused the cerebrospinal fluid in my brain to accumulate. A condition called hydrocephalus. To drain this excess fluid, a tube called a shunt was implanted in my body when I was ten days old: from the fourth ventricle of my brain to the peritoneal cavity, a space in the upper abdomen.

But even this shunt has been relatively inconsequential for me! Most kids who have shunts require at least one shunt repair or replacement before they reach adulthood. I'm 25 now and I have not required any. The pressure in my brain is great, as is the fluid level. Actually, I don't technically even have hydrocephalus anymore because the shunt works so well.

My shunt has worked so well it has prevented likely complications of hydrocephalus such as intellectual disability, serious mobility problems and life threatening illness. I am very lucky.

I've always seen my shunt as more of an organ than a medical treatment. In grade five science class, my class was asked to each choose an organ to do a project on. My teacher asked each child and wrote their responses on the blackboard. A few chose the heart, a few the lungs, kidneys, etc. I chose my shunt.

My teacher, who was made aware of my condition, asked me to explain my shunt to the class. In explaining it, I showed an understanding that the shunt was unusual and unique to me, but I also normalized the shunt by explaining how it kept me healthy and active -- just like any other organ would.

Even though the shunt is just below my skin (except for the part that goes into my brain of course) and I had a bunch of provisions growing up to protect it, I've never been afraid of damaging it, or of getting sick with hydrocephalus. Especially when my neurosurgeon told me that scar tissue had surrounded the shunt. This was my body's way of protecting the shunt, just like it protects any other organ. My body did not think my shunt was a foreign body, something to be destroyed. And I didn't either.

But I don't feel totally invincible. Medically, my Dandy Walker Variant and hydrocephalus have not been a problem at all with the shunt, except for some nerve damage that eliminated some peripheral vision from my right eye, but that doesn't mean I'll never have more problems. And I learned last year that an MRI or CT scan may not detect hydrocephalus if it is mild or intermittent. And it won't necessarily detect a shunt infection either. I've been having weird symptoms off and on for two years now since a weird illness following my wisdom teeth extraction in the hospital and I'm not convinced my shunt is not involved even though my scans are clear. The balance problems, stamina and leg fatigue issues I'd always had became worse.


And there's other unpleasantness.


And I do have a learning disability called the auditory processing disorder that makes following auditory directions difficult. My shunt hurts me sometimes, probably because of the scar tissue chafing it.

And I have a bunch of other relatively harmless, but difficult health problems and a long history of freak illness. Don't know if there's a connection between those and my brain, but anyway...

The Sunshine Foundation, that grants wishes to children will illnesses and disabilities, appreciated the struggles I faced -- my family faced -- and sent me off to Disney World in 1992. My dream was to meet Scrooge McDuck!

Isn't he handsome?
I didn't understand why I got this amazing trip. I still don't. I tend to feel guilty when I get sad or frustrated about my problems. A big part of me feels I have no right to complain because of the great health and mobility I have had in my life and how unusual these things are for someone with a shunt.

But I know I struggle and I've been through a lot Having had much better health and mobility than many with my problems does not invalidate my experiences.

Thanks for celebrating with me. And thanks to Scrooge, wherever you are. One day I will come see you again.