The Lesson My Daughter Taught Me When Lupus Made Me Lose My Hair

This disease has taken many things from me – time with my loved ones, events, my emotions, my job. I call it a thief all the time, because it truly is. There are parts of my life I can’t get back that simply exist now as memories. There are things I can’t do that weren’t even a thought before.

It is hard. More often I feel like it is harder than people really understand – unless they have lupus, or any other autoimmune disease. It is really hard to live in a place of constant question. How do you live with purpose, if you don’t know how your spirit will feel tomorrow?

You try to learn how to exist with it, to understand that it will be a part of your life. But it is one of the hardest things that I have ever had to do. Relinquishing control to something no one really understands, not even you – the person that lives with it daily. There are times I try to wish it away, but then someone else would have it – and I know I am strong enough to beat it, or at least do my best to outlast it for as long as I can. I believe that I wouldn’t have it, if I couldn’t handle it. That’s how the universe works. Some of us get a shit hand, with some good cards sometimes.

Even in my struggle with lupus (and everything that has come along with it) I have been fortunate. Yes, there is major organ involvement and I was close to a place I didn’t need to be just a few months ago – and still am now. It is hard to know what is right and wrong, since that seems to change day by day. There are no rules, no rhyme or reason. It simply does what it wants to do no matter how many pills I take, ohms I utter or naps I take.

You know what they say, “You learn the steps to the dance, then they change the music.”

Yesterday was an OK day. I felt happier than I had in awhile, and that is remarkable for someone like me, who struggles with both anxiety and depression,which is completely and totally engaged because of the lupus. Mach speed levels. I felt hopeful, that even if I wasn’t exactly kicking some lupus ass now, I would be eventually. I felt the light at the end of the tunnel, maybe a good result right around the corner.

Until I took a shower.

I decided I felt well enough to wash my hair. I will admit, it had been longer than it should have been, but sometimes when pain dictates certain portions of your life, or every portion of your life, there are certain sacrifices you have to make. As the water went through my hair, I could feel it happening. I legitimately lost more hair than I ever have throughout the duration of this disease. It fell out in clumps, full curls. Ringlets.

I freaked out. My anxiety kicked in immediately. I had to turn the shower to cold because I felt like I was going to pass out. The tears began to fall and all I wanted to do was get away from the clumps of hair clogging my drain, sticking to the floor of my bathtub and walls. I cried. Even though I know it’s only hair, and I have plenty more, and it’s a small sacrifice. I cried because it was taking something else from me in that very moment, and physically I was powerless to stop it.

So I let it take over. I let it take over because without taking the time to relinquish control to it, I understood that I would only make myself sick, and possibly make it worse.

It’s a very vain thing. I know that. Women who have cancer have a similar experience – that moment when they run their hands through their hair only to find most of it clinging to their palms. I wanted to scream.

I walked into my bedroom with a Bounty paper towel full of my hair.

I stopped. I caught my breath. My husband held me down, like he does. I realized that it’s hair, and with or without it – I can’t change the outcome either way. It will grow, or it won’t – we will handle it either way.

The biggest part of last night was that I scared my daughter, who with her little 10-year-old brain and 110-year-old soul said to me this morning, “Mommy, I am allowed to see you cry. You can’t be strong all the time, and that’s why we are here.”

My fear was too much in that moment, and I didn’t want to be weak in front of her. I didn’t give her the credit to know that this disease has changed her too. She understands that tears don’t have to be held by just one person. We can all wipe them away for each other.

My husband deserves an award for all he deals with. He left me to sit with her, to assure her that I was OK and that nothing terrible was happening to me. He made sure she understood that I wasn’t in any pain. He cared for her, he loved her, and he loved me. The only and best way he knows how – by reminding, coaxing, bringing me back to the moment that I was in with him and holding me there. By being present.

My mother helped me to understand that I was getting better, and if that’s the sacrifice we have to make, then so be it.

There aren’t many things I can do about this lupus thing. I take the medicine, I have been mostly calm, resting, harvesting and listening to my soul. All I can do is hope, because I feel like it’s the only thing we have left.

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