What I Want Everyone To Know About Hydrocephalus

Why do I write about hydrocephalus using lake imagery?

 I think it is because here in Minnesota we are literally surrounded by lakes, and many of those lakes are connected to each other by rivers and streams. We see them every day. Most people don't realize that inside our brains there are pockets of fluid connected by channels called aqueducts. The fluid is cerebrospinal fluid, often called CSF. It's filled with nutrients that feed our brains, and at the same time it flushes away waste from our brain cells. This is exactly how we--and all life on earth--use the lake and groundwater around us, to give us necessary nutrients and flush away waste. In hydrocephalus, there is an excess of that normally helpful fluid, CSF, which creates pressure on the brain. The cells that usually assist us in re-absorption of the CSF can't keep up with the production of it, which as far as we know is constant. The pressure prevents the brain from functioning properly, resulting in symptoms like headaches, nausea and vision problems. If caught early enough, permanent brain damage can be prevented. Coincidentally, here in Minnesota and elsewhere in the world we are trying to figure out how to live with an excess of water caused by climate change, cleaning up after severe rains, extreme storms and flooding. The parallel is all around us, all the time. 

Why should others know about my condition?

Hydrocephalus, like depression and other illnesses, can seem invisible to us. I am not limping, not wearing a cast, not showing obvious signs of having a medical condition. Yet I do have a daily struggle with memory problems, recurring headaches, and the ever present threat of my brain shunt malfunctioning which is life-threatening. I pay a lot of medical bills.  Many of us struggle with depression. Some have other conditions along side their hydrocephalus, like Spina Bifida, seizures and Chiari malformations, that present other hurdles, as well. We want to be accepted and respected by others, and would like others to realize that we may have special needs, but inside we are just like you. There is much more to us than just our medical condition. We want to be treated kindly and compassionately, with respect and dignity.

What advice do I have for others who have this condition?

 Don't be afraid to tell others you have hydrocephalus and at the same time don't use hydrocephalus as an excuse to not be your best self. We all need close friends to be able to share our lives with. We need intimacy. Share your hydrocephalus struggles with those with whom you already have a close relationship. Lean on their support. Let yourself be encouraged by their love. Then try new things. Wear a helmet when you do activities during which you may injure your head. Find out what you're good at. Be reasonable about your limitations. It is immensely freeing to not live your life in fear of others finding out about your condition. By the same token, it may not be necessary to tell some of your acquaintances about it. You may or may not want to reveal it to your employer. It depends on your personal situation. Hydrocephalus will not keep you from enjoying an abundant life, but fear will.

For more, read The Lakes In My Head: Paddling An Unexplored Wilderness