The Whole Story: Part Thirteen - Hair Today, Gone Tomorrow


    One part of this journey that became a particular challenge for me was my hair. A significant part of me wondered if my hair, which was so slow to dry and I tended to wear in a ponytail which covered my incision totally, was partly to blame for my infection. After the first brain surgery, I had a thin line of hair shaved where my incision was on the back of my head down to my neck. After the second surgery, this thin line was widened to a landing strip. In addition, I had a few spots on the top of my head near the front that had been either trimmed or shaved so that the EVD could be placed.

    The day after my second surgery a sweet nurse helped Michael to “bathe” me with we wipes and wash my hair with a washcloth. I didn’t even know this was possible! She got a basin of water, and they soaked washcloths in it then ran them over my hair to wet it, they applied the soap, and then they repeated the process with the washcloths to rinse it. I felt very loved and cared for, although a little awkward sitting naked in my room as others bathed me. I felt even more loved when, after I returned from having some CTs done, she returned with some detangler and sat on my bed combing my hair. Apart from a salon stylist, which is a totally different thing, I can’t remember anyone else combing my hair since my mom did it when I was a little girl. I felt truly blessed. The down side though was that regardless of how much detangler was used, chlorhexidine is not kind to hair. That was my first and only ICU hair washing and after nearly two weeks there, my hair was in a terrible state.

    So when my surgeon informed me that the third surgery would leave me with a large Nike swoosh shaved on the side of my head, I knew it was time for my hair to go! I didn't see any possibility of saving my hair from this state that it was in at the time, and I truly worried about it causing further infection. And with all of the patches of shaving that I would have, I felt like it would look far more ridiculous to try to maintain it then it would just to shave it entirely.

    I asked my surgeon, who visited me daily, how long after my surgery I would need to wait before going to a salon and having them shave my head. He offered to do it in the surgery, and I initially turned him down because I didn’t want to bother the team with something so frivolous. But as I considered the situation, I thought about the difficulty of working around all my incisions with a set of clippers and my fear that my hair had influenced my infection. So, I took the doctor up on his offer and someone on the team did a fabulous job of shaving my head while I was under anesthesia for my VP shunt surgery. I woke up with no hair and a large bump on the side of my head – not to mention more than a dozen staples in my head! You’d think this would have had more of an effect on me, but I think I had experienced so much trauma that this just rolled into my current state of being. Maybe a part of me also felt like this was an outward sign of all I’d been through, helping with the, “but you don’t look sick,” reactions. I felt like now I definitely looked sick! Nine months later I am now dealing with the awkward stage of grow-out. My hair won’t do anything I want it to, and I constantly feel uncomfortable with how I look. I don’t think I would have changed any of my decisions, but man this is hard!

Here's the Thing: Losing my hair wasn't a life-or-death scenario like many of the other things I faced during these months, but it mattered a great deal to me. Sometimes in life it's the little things that shape and give meaning to the big things. They end up feeling just as important. My surgeon didn't have to volunteer to shave my head, but he did, and he did a great job of it too. That made a huge difference for me and helped a ton. I'm super grateful to him for going that extra mile.

The Whole Story:

Part One - The Call That Changes Your Life
Part Two - When "Wait and See" Wouldn't Sound so Bad
Part Three - Reflecting on My (Almost) Presurgery Week
Part Four - Living in the unknown
Part Five - Taking Opportunities as They're Given
Part Six - The Big Event
Part Seven - How Many of you are There?
Part Eight - Beginning the Journey of Recovery
Part Nine - The Unimaginable
Part Ten - I guess that's better?
Part Eleven - A Day in the ICU
Part Twelve - Long Haul ICU
Part Thirteen - Hair Today, Gone Tomorrow
Part Fourteen - A Soft Discharge
Part Fifteen - The End of the Chapter

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