Living With Hydrocephalus

"You’re young. How could you be unwell?"

This question is often asked of Tracy*, 43 year old mother, artist and part-time administration office employee. She was diagnosed with hydrocephalus in November of 1987.

Hydrocephalus is the accumulation of cerebrospinal fluid in the brain. This accumulation can be caused by excessive fluid or a blockage in the ventricles. In a normal brain, the fluid made in the ventricles passes through the brain, then into the spinal cord where it is absorbed through the body. A build up of fluid puts pressure on the brain, forcing the brain against the skull, which can result in damage or destruction of the tissues. Hydrocephalus is most often associated with children, though it can occur in adults. Approximately 1 out of every 1,000 people develop hydrocephalus.

Tracy is one of those people. She first noticed symptoms when she was a child. Often sick with headaches and vertigo, her illness was put off to stress or hormones. Tracy’s father, a Peacekeeper, moved the family all over the world. By the time she was ten, Tracy’s symptoms began to worsen. Being accustomed to the reasons given for why she was always so ill, Tracy simply compensated for the symptoms. Around the age pf 21, the symptoms worsened to blurred vision, confusion and a sense that the room was spinning. She consulted with many different doctors, all of whom put her symptoms down to stress.

Tracy remembers sitting in Emergency in Victoria, on December 27th, 1987. She’d finally been diagnosed in November of that year, after being married in May. "My condition had worsened. The doctors wouldn’t let me leave until all their tests were done." More tests would occur in the month to follow. At one point, a lumbar puncture was performed and a radioactive dye inserted into Tracy’s body. "They tipped me around on this thing, to see where the cerebral fluid was moving". Tracy had a blockage in her brain, allowing through a very small flow of fluid but not enough.

Of her overnight hospital stay in 1987, Tracy says, "I remember sitting in the hospital and thinking, ’all I have to deal with right now is this test. I don’t have to think about anything else. Just this test.’ I didn’t have a choice!" This was when Tracy’s faith started to become very important to her life. The spiritual feelings that had been creeping up on her for years, really hit home. "My faith came alive in the throes of emergency. This wasn’t the type of ’emergency faith’ sometimes associated with difficult times. It wasn’t, ’God, please help me now’ and then gone, later. It actually stuck".

Over the years, her faith has become very important. Not religion, but faith. Although Tracy has found a religion which suits her current needs, she says the determining factor is if she can or can’t live with certain aspects of a religion. It is in her life unless she finds something in it which doesn’t agree with her own values system. Tracy’s faith is the constant. "I’ve always had a way I think of God, Heaven and Hell. I just never had a name for it." When she discovered her religion, this part of her faith, Tracy was able to put a name to what she already believed. "It’s one step closer to my own beliefs." Tracy once said to a friend, "I believe that all religions are a reflection of one God."

In January of 1988, Tracy had a successful surgery and it’s been eighteen years since she’s needed surgery for the hydrocephalus. Though every day is still a concern, Tracy’s experience has brought her closer to her own spirituality. Closer to really living life, every single day. A lesson from which every one of us could benefit, no matter what our difficulties.

*Last name withheld, upon request.

Author: Jen Pierce,