After 35 years of life, I have a few things to say.

Category Archives: Hydrocephalus

IMG_1097And I’m off and running.  Day 1 and my book is started.  1772 words so far and I might do a few more pages tonight.


pumpkinsHappy Halloween everyone.  I hope your weekend will be filled with scary movies, amazing costumes, and mouthfuls of teeth-rotting candy.  The one day of the year when you can dress up and pretend to be someone or something other than yourself.  Well, you can do that any day, but this is the only day you can do it and not get weird looks.  You have to laugh at the thought of what aliens would think if the one day they visited to observe us was on Halloween.

More scary than Halloween costumes and movies is the fact that the Nonfiction Writing Challenge starts tomorrow.  I’m not sure I am prepared to start, but I am excited and ready to get going on my first book.  If you haven’t been following along with my story so far, I’ll give you a preview.  When I was 4 or 5 months old, I was adopted by a loving family, but very soon after settling into my new life, I got very sick and was diagnosed with Hydrocephalus.  Because of this, brain surgery was required to save my life by installing a shunt to relieve the pressure in my brain from Cerebral Spinal Fluid (CSF) build up.  Without this surgery, I would have died from brain damage when my brain was crushed against my skull by the outward force of the pressure.

As you can imagine, just one brain surgery did not fix me for life.  Over the years, I had to undergo many shunt revisions, from malfunctioning valves to separated drain tubing, and even shunt replacement at least twice.  When I was 20 years old, I had been under the knife a total of 15 times I think and my family was ready for a different solution, one that was more permanent.  We learned about a new procedure that could rid me of a shunt altogether, called an ETV (Endoscopic Third Ventriculostomy).  This procedure is not for everyone with Hydrocephalus and you have to meet certain criteria for it to even be a possibility.  Lucky for me, I was a perfect candidate for this surgery, so for the first time in my Hydrocephalus history, I wanted to get surgery.

In December 2000, I went into surgery voluntarily and healthy, to have my shunt removed and the ETV performed.  Since I went into the hospital healthy, two surgeries had to be performed.  First, they had to remove my shunt and induce Hydrocephalus so that my ventricles filled with CSF and swelled up.  They had to do this so that they had the room to perform the ETV.  I spent a week in the hospital after the first surgery, just waiting and monitoring my pressure, waiting for the pressure to rise.  Once it was high enough, I went back into surgery to get the ETV.  My book will have the details of all this, but long story short, the surgery was a success, and I sit here now, 15 years later, shunt free and headache free.  The ETV is still working and I am grateful not to have had to get any more surgeries.  I’ve been meaning to write this book since the ETV, but now is the time and the story is even better now since I have had 15 years without a problem.

OK, maybe I am prepared to start this book tomorrow.  🙂

Thanks for reading.  Hopefully I will have the complete story for you to read in a month or so.

Happy Halloween.

Simon


image

It’s only a week away from the start of the Write Nonfiction In November Challenge and I am getting really excited to finally telling my story. The photo above is just another example of the awesome beauty in this world.  The fact that I am here to witness this beauty with my own eyes is reason enough for me to write this book. 

This week, I have some decisions to make before the challenge starts. There are many directions I can take this book and I need to figure out the best path. I could stick to talking about the accomplishments in my life and how I beat the odds. I could focus on the medical side and tell the story of the progression in technology which has enhanced my quality of life tremendously. I could talk about the sports I play, against all odds, and against some recommendations. I could talk about my adoption and how Hydrocephalus did not break apart my adoptive parents hopes and dreams, but instead made us stronger. I could talk about how, in spite of having multiple birthdays and holidays in the operating room, I am a very optimistic person.

I could talk about one of these topics, and I probably will. In fact, I may talk about them all, and 10 more topics too. It is going to be a challenge for sure. Staying on topic will probably be the hardest thing of all for me. I love rabbit trails, but in the end, I am here, I am healthy, and I am able to write, so I hope I can bring you a story that brings a smile to your face.

Come on November, let’s write.

Thank you.

Simon. 


Since I can remember, I have wanted to write a book.  I have the stories to share, but I have never taken the time to put them down on paper.  Well, I think now is the time to get started.  Why now you ask?  Well, I’m not entirely sure, but I have just recently started blogging again and it feels good, so I guess it has inspired me to look back on what I really want to write.  Anyone who knows me well knows that I am no stranger to hospital stays and surgeries, and I have the scars to prove it to the ones who don’t know me.

At a very early age, I was diagnosed with Hydrocephalus.  I have been through many surgeries, a few shunts, and lots of hospital food trays.  Today, I have zero shunts, zero headaches, and have been surgery-free for 15 years.  This was made possible with new cutting edge technology and the surgeons willing to try something different.  I want to write a book telling my story, not only as a historical record of my journey, but also to give families hope that there are success cases out there.  I am here and healthy and I want all the parents of hydro babies to know that their kids can grow up healthy like me.  Hydrocephalus doesn’t have to control their lives.  I just feel like my story can help in some way, to show the possibility of a positive outcome which doesn’t end in headaches and more surgeries.  It’s time for me to share.

Another reason I am ready to start now is that I found out about a novel writing contest in November.  Even though I am not looking to write a novel at this time, from the site of that contest, National Novel Writing Month, I found another challenge just for me, The Write Nonfiction in November Challenge. I’m going to do my best to finish my book in a month, but more importantly, I am going to start my book in November.  If it takes longer, so be it.  The challenge for me at this point is just to start.  Anything more is icing on the cake.  Wish me luck.

I hope you stick around and read my work when it is complete.  I will try not to make you wait too long.

Goodnight.

Simon.