I am not my hair.

I have toyed with this idea for a long time… shaving my head. I have thought about it long and hard. I would go back and forth with it. It wasn’t until Saturday that the notion struck me and stuck.

Coast Trip

July 2014

Society gets so hung up on women, and how we should or shouldn’t look. What we should or shouldn’t do with our skin, hair, bodies, weight, attitudes, demeanor, careers, families, lives, etc. The list goes on and on. What if I told you that it doesn’t matter what I do with my hair? Does it matter what piercings I get? Does it matter what tattoos I get? Do any of these things truly make me who I am? No. My hair does not make me who I am. It is merely a beautiful part of my beautiful self that makes me my beautiful me. Did I mention beautiful?

And right now my Beautiful Me is being challenged beyond what it ever thought it would. I am a warrior who has been in battle for 2 1/2 years. I am a warrior who is tired. I am a warrior who hurts. I am here, fighting this battle with no other alternative but to fight.

So much has changed over the last 8 weeks. I am now in a wheelchair most of the time. My headache pain sits at a solid 8(on a 0-10 scale) every day with flares up to a 9 (and 10 occasionally). My body/nerve/etc pain is creeping up to that level too. Seizures off and on throughout the day and night. The list goes on and on.

My long beautiful hair, which I love very much, had become more painful than beautiful. My nerve pain had gotten so bad. Putting my hair up in a bun hurt. Brushing my hair hurt. Washing my hair hurt. Simply moving my hair hurt. So when I came home from the hospital and was having a horrible time getting the glue and gunk out of my hair from the EEG. It made me really face the reality of where I’m at. My energy is a precious thing. A very very very precious thing. The pain from trying to get the stuff out of my hair, was making me physically ill. The pain was escalating and not helping the flare I was experiencing too. So on Saturday as I thought about what I was going to do, I realized more and more that there were so many positives to shaving it all off.

I know people wonder if I will regret it. There is literally no regret. My hair is not what makes me beautiful. I feel so beautiful as I sit here typing this. I feel relief. I feel empowered. I feel a little shred of control in a situation that leaves me with little control over my own life, or body for that matter.

People don’t understand what a life altering thing that Lyme Disease, and its co-infections, can be. They don’t understand what a battle you have on your hands. They don’t understand the struggle you face, not only in getting better but also in merely getting the recognition in what you are facing. The physical toll it can take on your body is immense. The emotional toll it can take on your spirits can be crushing. I have a long road back to normalcy, and this is my Warrior moment preparing me for the rest of my journey.

There is nothing “easy” about treatment, or getting well. Each day is a struggle that I face as I get out of bed. Each step I take, I fight for. Sometimes it feels like we take more steps backwards than forwards. I have had people watch my spiral since Feb. 2016. They tell Kenny how they can’t believe what it has done to me. That’s just the thing, and part of why we have this blog. People don’t understand what it can do, and they need to know. They need to be aware of the massive life shift that chronic Lyme Disease can cause. It can have absolutely devastating effects on lives, and if not taken care of… fatal. That statement is not dramatics either. Whether that fatality comes from Lyme Disease itself, or the inability to cope any longer with the agony you have to endure… it is the cold hard reality of what this disease does.

So when I took the stand to shave my hair, to get ready to battle longer and harder…. it wasn’t without thought. It wasn’t without purpose. There is no regret. There is no sadness. There is only relief and resolve. I have tough days ahead, that I am ready to take head on… free of the added discomfort of my beautiful long hair. No more tears while I try and wash my hair. No more wincing as I try and brush knots out of it. No more untangling hair ties after a seizure that has sent my bun all wonky.

There is just the freedom to fight…

Coast Trip 2014

July 2014

Warrior 2016

Warrior Haircut October 2016

…..and that’s just what I’m going to do.

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