Losing it

It’s everywhere.

In my bed.

On my clothes.

In my food.

All over the house.

I even spot strands of it stuck to my children and my husband. Probably from hugs.

I’ve been out of ICU for about 12 weeks, and now I’m losing my hair. Handfuls, brushes and combs full. For the past month. And it’s not showing signs of stopping anytime soon.

I often wonder if it will ever grow back. We don’t know yet.

The doctors are starting to throw around words like “autoimmune disease” and EDS and “no cure.”

Of all the symptoms I’m experiencing–and there are many–hair loss is one of the hardest. Because it affects my appearance. And in our image-obsessed society, we just can’t have that, can we?

I was going to post a “before” picture of my long luscious locks, but after reading this article from Beauty Redefined, I decided not to.

This quote particularly struck a chord:

What if instead of thinking of ourselves in static, reductive terms of “before” or “after,” we thought of ourselves as in between those two points: during. Any photo you take of yourself right now is just a “during” shot. You are “during” (and enduring) a journey of a million befores and afters.

-Lexie Kite, Beauty Redefined

“Run and hide,” says the devil on my shoulder. “Laugh it off,” says the angel  on the other side. “Be brave, be brave,” beats my heart.

Either way, I take a big breath … put on my hat (or not) and walk out the door. Because I am more than a diagnosis. I am more than a body.

Quote used with permission from BeautyRedefined.net

20 thoughts on “Losing it

  1. Thank you for sharing your journey with us. I don’t know fully what to say but I am sorry you are experiencing this uncertainty and I will pray with you for direction and answers and comfort.


  2. Oh my dear friend. I wish that I were close and could run over and give you a hug. I wish I could make you a meal. I wish I could offer a shoulder. I wish. I wish that I had done those things before. I didn’t know. I wish that I had somehow seen beyond and known at a time when I could have run over and given you a hug, made you a meal, or offered a shoulder. I’ll always be sorry for that. Thank-you so having the courage to share, to open yourself up for others to love and be there for you. Thank-you for being the shining light that you are. You are a light that no amount of darkness can extinguish. You are absolutely not your body. It does not define you. Please know that it is ok to mourn for it though. Please know that you are loved Melody. You are well thought of. You are respected and admired and that has nothing to do with your hair, or your body – it is because of your soul. The world is better for having you in it. Our lives are better for having you in them. Hang on my dear. Hang on.


  3. So sorry you are having to endure this! Sounds like aftermath of PTSD… Praying you will get answers, solutions and relief. PS I shared this article on SI on FB. Thank you. FYI-There is a Resolution in the General Assembly this session, HJR 549, “Recognizing pornography as a public health hazard leading to a broad spectrum of individual and public health impacts and societal harms.” Love, In Christ, Judi:)

    On Fri, Jan 13, 2017 at 5:48 PM, mama crossroads wrote:

    > Mama Crossroads posted: “It’s everywhere. In my bed. On my clothes. In my > food. All over the house. I even spot strands of it stuck to my children > and my husband. Probably from hugs. I’ve been out of ICU for about 12 > weeks, and now I’m losing my hair. Handfuls, brushes and ” >


  4. Oh, Dear Beautiful Melody! You are Stunningly Gorgeous from the inside out! You always have been. I knew you as a little girl when you played with my girls. What torture you have been through. I am so very sorry. You must be so extraordinarily strong. I am sure you wonder sometimes how much stronger you will have to be. I, too, know of autoimmune diseases. What I keep holding onto is that someday, we won’t have to worry about our body not functioning the way it is supposed to. It will be perfect. We came here to get a body and we weren’t promised a perfect one. But, come we must! I’m sure you have helped more people than you will ever know. May I put you in touch with another one of our friends who appears to have gone through a few of the same things you have? She is just as wonderful as you are and I think you two would be so good for each other. Let me know if you are interested, and I’ll make the contact for you. I’m so glad you come from the family that you do. I know that they love and support you through anything that you could ever need. Remember. You shine from the inside out. You always have. Lots of Love. Kelly Thompson


  5. You are super woman! And your courage and boldness to speak out about hard things (really hard things) blesses the lives of so many! Thank you!


  6. I do think the head, face, hair stuff is the hardest to deal with because it’s the image we associate with “me.” My sister was on a steroid medication last year and she got the chubby moon face that went along with it. Sooooo hard! But people kept reminding her that they were so grateful she was ALIVE and didn’t care about a change in her appearance. I love your “during and enduring” photo! You inspire me with your journey.


  7. Aw, hun. Your note really touched me today. It IS good to be alive. Love you so much. YOU inspire me too, you know. We’ve both done hard things. 😉 And we just keep on keeping on! xoxo


  8. Kelly! You warm my heart. Of course! I would love to connect with anyone else who I can band with through this thing! Including you! We gotta stick together. I’m so sorry you’ve suffered too. We can do this! Thank you so much for your love and support.


  9. No fair! You made me cry. I love you so much. I love our memories. I love all the time we had close, and I love that we are still in touch. No apologies and no regrets, got it?! Love you!


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