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From my Head to Yours

2015-01-26 Posted By Jenna

I was born with Hydrocephalus (I think that’s pretty common knowledge by now). And, like Spina Bifida, Hydrocephalus can be a lottery system. Some people can go their whole lives without needing brain surgery to fix their shunt - I was not one of these people. For those of you unaware of what a shunt is, it's a device made up of a pump attached to a tube and the pump is placed in one of the brain's ventricles with the tube descending down the neck and into the abdomen. Why? Well, with Hydrocephalus your body doesn't really know that it has a job to do in draining the fluid made by the brain (bathing itself to stay hydrated and at its best). If something like a shunt isn't used, the building fluid in your head puts more and more pressure on the brain causing all kinds of havoc, and even...death... Luckily, the shunt's been around since the 70s, and when it works - bliss! When it doesn't...apparently, I'm not that fun to be around.

I’ve had 5 of those babies, which may seem like a lot (or nothing to write home about, depending on your perspective), but 3 of those happened in consecutive years - during teenage-hood. When you’ve been in the health care system for as long as I have, and have had to make peace with so many visible differences between yourself and the world around you, it can be hard to find something about yourself to feel beautiful. Therefore, I was sooo grateful for my long, thick hair (à la Kelly Kapowski). My hair made me feel beautiful, it was also an element about my appearance I had control over. Or at least until shunt surgery.

So there I was - 14, 15, 16 - in debilitating pain because of my shunt and needing surgery, but what pained me more was the fact that my hair was going to be shaved. It felt like the one and only thing that made me feel beautiful (or even normal) was being ripped from me (for those of you who might find this superficial - I know, but most teenagers are so cut me some slack!). I’d end up in negotiations with my neurosurgeon before my surgeries, trying to establish how much he NEEDED to shave off. You know you’ve had one too many of those surgeries when you start negotiating with your NEUROSURGEON. Then again, we all have a lot more…chutzpah... when we’re teenagers on a mission.

There was this one time, I was going in for surgery and my surgeon had told me that he was only going to be shaving off an area the size of a postage stamp, underneath a lot of hair - nobody would even notice! Fast forward to the recovery room after surgery, not realizing anything’s amiss (yet). My mom has just come in to visit and now it's Dad's turn. Unfortunately, my Dad doesn't realize that I don't know anything's wrong, so I'm confused as he keeps on reassuring me - essentially - I could pull off a combover (but in a nice way). It was at that moment, I could’ve sworn I felt a slight breeze on the top of my head, and very slowly my hand found its way to the very sizeable bald spot. I was not happy, which became quite clear to everyone else in recovery, as I loudly started lamenting about needing a toupée and other hysterics. Not one of my better moments… It was quickly deemed that I was better enough to be moved to my room - which I still think was a polite way of kicking me out of recovery.

As the hair grew back in, it was doing so in such a way that it looked like the top of my head had been taken off and not screwed back on not quite right (I had my regular bangs on the front of my head, and a new set on the side of my head).

Making matters worse, I later found out that the additional shaving had taken place as a precaution, not necessity. But I don’t hold a grudge…ok, maybe a little one.

But in all seriousness, it’s been 8 years since my last shunt surgery, and I don’t know if it’s the feeling of security that I’ll probably never have another one (did I just jinx myself?); my work at the hospital and hospice; the fact that I’ve grown up - but 3 years ago I made the decision that I was going to donate my hair.

I realize that I was and am lucky, the circumstances under which my hair had to go bye-bye weren’t necessarily life-threatening. I realize that people have it so much worse than I did (with have a WAY better attitude…not that I set the bar particularly high). I realize that even though it may not seem as traumatic to you, as it was to me, I want to be a part of making sure people have a choice in how they can feel stronger going through recovery - from a hair perspective. (The littlest and seemingly inconsequential things can make a world of difference to ones spirit!)

I know I’m not the first one to donate their hair! I know that some people feel that bald is beautiful (read up on Talia Joy); I know that some people can see the bigger picture (which probably doesn’t revolve around what ones hair is going to look like for a while - in the grand scheme of things); I know that some people see the opportunity in a wig to bring back a sense of normalcy and the person they were before getting into such a situation.

And knowing all that, I don’t think it’s wrong for me to want to mark this occasion. To celebrate it. To me, being in this position, reminds me of how far I’ve come - physically, mentally and emotionally - and that I have a great opportunity to turn a pretty crappy time in my life into something meaningful (for myself, and hopefully someone else).

So, sayonara hair! May you bring comfort, confidence and strength to someone else who needs you.

And a HUGE thank you to Angela Green at Piccadilly Salon for the support and an awesome new do'! You're a wonderful friend full of empathy, compassion, passion AND creativity (with a little touch of sparkle ;) ).

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“Overcome the notion that we must be regular... it robs you of the chance to be EXTRAORDINARY ”
Uta Hagen
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