Who’s the Boss: Disease or Me?

Let’s play “who’s the boss: disease or me?”

There are things happening to me that terrify me. I lost the battle for my body – as my weight continues to climb – and I accepted this…

… but then, the battle for my hair began.

On Monday, September 3, 2018, I took my regularly scheduled morning shower… and… my hair started coming out. Handfuls.

I remember standing there, dumbstruck, staring at my long, beautiful hair in my hand. I remember holding my hand under the stream of water and watching those long strands go down the drain into nothingness. It was just… gone. In a daze, I got out of the shower and wrapped myself in a towel… staring blankly at my reflection in the mirror.

I walked out of the bathroom. Tim was awake.

“Tim… my hair is falling out.” I said, dully. And then I burst into tears. I was shaking from the fear and the agony I felt in my heart. I couldn’t stop crying, couldn’t accept what was happening to me.

My body I could handle… but my hair. Why my hair?? Why take that from me when I had already lost so much of myself. It was then, in that moment – as I stood there, hysterically sobbing – that I realized I wasn’t going to let the disease take my hair.

If anyone was going to take my hair, by God, it would be me.

I contacted Shirley, my hairdresser at Healing Wizdom Spa and Salon, and told her what had happened and that I needed a semi-emergency haircut. We couldn’t meet until Thursday the 6th, but by then I had come to terms with my decision:

“Now,” Shirley says as she sits me in her chair, “are you sure you want to do this?”
“Yes.” No tears. “I can’t go through that again. Shirley, when I stood there and watched my beautiful hair go down the drain, I just… I can’t see that again. I need to do this. I can’t let this disease control my life.”
Pause, considering my hair, “Well… if you want to do this, can I make a suggestion?”
“Sure.”
“There’s a local place in town that accepts donated hair for children’s wigs, and it’s not Locks of Love. I can’t remember the name right now… but how would you feel about giving your hair to them? They’re nonprofit and it would help someone.”
“Yes! Absolutely, Yes!”
“I’ll have to take a little more than you wanted though…”
“That’s fine. Let’s do this.” Pause from Shirley as she looks at my hair. She then bands it into two piggy-tails of equal size right at the base of my neck. Pause again. Tears forming.
“It’s not so bad,” I say to Shirley, “it’s only hair. It’ll grow back.” I smile at her.
Her tears start falling. “Of course, you’re going to be fine. You’ll get through this, and then I’m going to put streaks in your hair to celebrate.” Puts her arms around me in the chair and clutches me to her chest. “There’s a reason you came to me. A reason you ended up in my chair, and I am so thankful that I can help you through this. You’re going to be alright. You’ll get better. Those doctors you’re going to see in Stanford are the best, and they will help you. I thank God you’ll be with them.”
I feel tears gathering in my eyes, try to blink them back, “Shirley, it’s okay.. I’ll be okay. Please don’t worry for me, I’ll be fine. I promise.”
“Look at you, trying to comfort me when you’re the one who’s sick,” both start laughing, both are crying, “I’m going to add you to my prayers and to the prayers of my prayer group. We will pray for you.”
Tears streaming, “Thank you, Shirley. That means a lot to me.”

07Sept2018-HairDonation

And how could I forget Shirley’s darling grand-daughter, who helped me through this session? Beautiful, sweet-tempered, and with a heart of gold, her smile saved my heart from breaking that day.

Looking at these pictures now, I am so unbelievably thankful to have such pure and beautiful souls in my life. As I continue on this journey, I need to remember that no matter how awful it seems, there’s hope. Hope for myself and others who are suffering from this disease that we will be ourselves once more.

Now, no more tears!
I look fabulous, thanks to Shirley.

06Sept2018-Survivor

I get to help someone feel better about how they look in the same way that Shirley helped me to feel better about how I look. And besides, as Shirley said, the donation place is going to love getting my “virgin hair.”

Who’s in charge? Who’s winning these battles? Honestly, it’s a no-brainer: cushing’s disease is winning, hands-down. But I will “never give up, never surrender.”