Saturday, September 9, 2017

Living with Hair Loss

It seems I must learn the lesson of living in the now on a daily basis.  I recently came across this photo taken by my husband about six years ago when we were on a trip to the eastern part of my country.  The image stunned when I first saw it because I saw myself as I was then.  I'd forgotten what I looked like. Quite honestly, the tears fell because the pain of hair loss screamed at me again.  "What would it be like to have hair again?" I wondered.  Was I living in the moment then?  Was I appreciative that I didn't have to figure out what to do with my head sans hair as I now have to do each morning and throughout the day? The takeaway lesson that I had from viewing this photo was that life is best lived in the moment  because you never get that moment again.  

Each day, I wake and try to live anew with a condition called Frontal Fibrosing Alopecia.  The hair falls in the shower, it comes out in the brush, my head itches, it hurts, it burns, and I have to decide what look I will have for the day.  

I don’t want to wear head coverings that scream cancer.  I don’t have cancer.  I don’t want to look like I might be dying from some condition.  This condition, the hair loss condition that I have, is killing me, but I’m not dying from it.  There is a big difference between dying, actually dying, and feeling like something is killing you.  
This is not the look I was going for, but it is the one I have

FFA (Frontal Fibrosing Alopecia) has killed my hair.  It took my eyebrows.  It took my bangs.  It is still taking.  It also killed my attachment to my hair, my bio hair, along the way.  It killed the link between my hair and my identity.

It has not killed me.


So much of my identity was tied up with my hair.



It still is, but now, I am learning a new identity.  The identity I wish to project is one I have struggled to accept.  It is the identity of a woman who wishes to live life as she is: nearly bald, altered on the outside, but changed on the inside.  I have progressed through the stages of grief over this new appearance of mine.  I’ve cried.  I’ve hidden.  I’ve screamed.   I denied that this could really happen to me to the degree to which it has happened. I’ve spent a lot of money on cures and cover-ups. I’ve been through the bargaining stage where I thought if I just changed my life style, the creams and lotions I used, changed my diet, this condition would die out.  None of that helped much or changed the advance of this progressive and permanent condition.  Those words progressive and permanent, I was just sure would not apply to me when I first heard them, but those words are true, and they are my reality.  Acceptance has been a long time coming, but day by day, I accept that there is so much in life that I can not change.

There is a meme that makes its way around social media where an image of a crazy haired woman is paired with the saying, “You can’t control everything.  Hair was put on your head to show you that.”  I fought and cursed my wild and crazy curly hair from my earliest days.  I wanted hair like all the other girls had:  smooth, under control, and straight.  I never embraced the hair I had until just before I started losing it.  I always tried to make my hair look different from how it was.  I wanted it to not have a mind of its own.  I wanted it full and straight, or at least I wanted it to have body without all the curves it seemed to want to take on its own.  I wanted to tame my hair.  I looked for the right styling aids, shampoos, conditioners, gels, and techniques to achieve the head of hair I wanted instead of the head of hair I had. How I wasted the times I had to just live life the way I was in that moment.

I was always looking for the perfect hair stylist. I had one for a short time.  Deborah was that perfect hair stylist. She was beautiful, stylish, glamorous, smart, a great business woman, a true professional, well read (we talked of books and literature), and she knew hair, especially curly hair.  She transformed my experience with my hair.  She helped me embrace the hair  God gave me.  She cut, and styled, and dyed my hair and loved on me and spoke her wisdom about life as she lovingly worked on my hair. Every trip to her salon made me feel like I had been transformed and lifted up inside and out.   

There was the time I was unfaithful to her and went to another salon and had my hair cut as short as I could get it so I could see what my real color was.  She said, “Was he drunk when he cut your hair?”  She thought I was too young and too young looking to go gray, but she went along with my desire to try and rock my natural color. 

I think of her often as I go through this journey of hair loss.  She shaved her own head and was stunningly beautiful before she sold her shop and before she got cancer.  Cancer took her quickly.  She died from cancer.  I am just living with hair loss.  There is a big difference.

I know Deborah would say to me, “You go girl.  Get the best hair piece you can and take good care of it.  Don’t be afraid to try new hair styles/wigs.  Wear fun scarves, headbands, and hats.  Don’t forget to get big, dangly earrings.”  Once, she fixed my hair right before a big social event.  She loved my outfit, but said the earrings would never do.  She left her shop with me by her side and walked me down the street to a little shop selling fun accessories and picked out the earrings she said I needed to wear.  I still have them.  Maybe, I’ll go put them on in celebration that I have what  she was denied: life. 


You just never know what look I will come up with.
Summer 2017

Who knows, maybe I will shave my head.  I will never rock a shaved head like Deborah did, but I learned from her that hair is just fluff.  No one really needs fluff.  Hair, hairstyles, the perfect body, glowing skin, and just the right touches to clothes and accessories are fun, but when we think that we are projecting who we are through these expressions of outward appearance, we fool ourselves.  We probably aren’t fooling anyone else.  I know what few others get to learn: acceptance is an inside job.  

17 comments:

#1Nana said...

Good for you! When you shared about your hair loss with the Vashonistas several years ago, I was stunned. I never suspected you had hair loss. At the time I remember feeling honored that you trusted us enough to share. Now I'm so proud of you, that you have recognized your worth with or without hair. You are a roll model for others who are battling this same challenge. We see your true beauty.

...and I'm glad you decided to write too!

Nancy/BLissed-Out Grandma said...

Sally, thanks for your bravery and honesty. I hope writing this has helped you, and it definitely makes me realize that I need to be grateful for life as I am, not as I might like to be. You are beautiful in so many ways, and finding these stylish and fun new looks is one more way.

Southhamsdarling said...

It's so good to see you here again, dear Sally. A very brave post, and I can imagine how this affected you. You always look beautiful to me, and that is true beauty that we all see in you. I hope you will start to write a little again now. I always used to enjoy your Posts so much. Hugs to you ❤️

Terra Hangen said...

I admire you so much for your never give up spirit and for sharing this battle with us. I see from your photos you have a lot of fun looks in 2017. You go girl.

Olga Hebert said...

So good to hear from you even if this was a difficult post. Really, your smile and the glint in your eyes are what make you so beautiful. Even so, I understand how hard an adjustment this condition requires. I have a male friend who has alopecia. He is having a hard time accepting it. I might have thought it wouldn't be so devastating for a man but not necessarily true. You have a close relationship with grief that makes me marvel and commend your strength.

Lori O'Brien Blackburn said...

I think I am in the exact same place as you in this disease progression, or rather the progression you go through of loss, denial, acceptance. Thank you for writing this. It made me cry.

Texyorker said...

Just what I needed to read today! Thank you for sharing your photos and for giving perspective to female hair loss. I have ups and downs emotionally about my personal hair loss but I'm still happy that I'm alive and well.

Linda Reeder said...

It sounds like you have come to terms with this condition after a real struggle. Now you can move on and live the life you want to live, not always thinking about your hair.

Michele said...

YOU GO GIRL! This is such a huge challenge! I appreciate your words of wisdom! I can relate to so much of what you're saying! Mom's mantra for me was always, "pretty is as pretty does!" You are beautiful!❤

Meryl Baer said...

A great post from the heart. My curly hair was a tragedy for me when long straight hair was in, and it took me a long time to embrace my mane. Be yourself, do whatever you want and enjoy the challenge.

Arkansas Patti said...

Thank you for your honest post. I think most of us of a certain age are struggling with some sort of hair loss. A widening part, pink bald spots that need careful combing, it is just a matter of time. I am grateful for the really cool wigs that are available and plan to use them when the time comes. You are not alone.

DJan said...

What a fine post, filled with love and acceptance. You know who you are and it shows through everything you do. And everything you write. :-)

Dr. Kathy McCoy said...

Wonderful post! You're such an inspiration, Sally. The long, thick hair I had in my twenties is but a distant memory. My hair is white and sparse and getting more so every day. It IS a challenge, but I agree that there is so much more to the unique individuals we've all grown to be. I loved reading this post!

Lin Floyd said...

What a challenge...I remembering having my last son at age 42 and then losing part of my hair at the hairline from stress. The doctor gave me steroid shots and that helped...may you find solutions and/or acceptance of this challenge. It' can't be easy!

Jeanie said...

Sally, rhis is such a beautiful post. Brave, honest, well written and inspiring. I think many of us have trouble coming to terms and accepting what we look like -- the media always presents that version of lush hair, thing hips, a lovely (or at least striking) face)... it's hard to measure up.

But hair and women ... that's so powerful. I admire those who shave their heads and let it go, just put on the turban for the cold days. I'd probably go back to my college days of hating my curly hair (who WAS that person?) and wearing so many wigs I don't think people knew me from one day to another -- long, short, blond, red, straight, fluffy. When I finally let me be me, as you have, the pressure was off and all that energy could go into other things.

I admire your courage in sharing this. I know a bit of the story, of curse, from before. But it takes strength and you rocked it. I hope others facing this condition will find your post and be inspired.

Lauire said...

Such beauty, wisdom, and insight--you are an incredible woman! So thankful for your post--we need to be more Real.

Heidrun Khokhar, KleinsteMotte said...

I was away and am catching up.
Yes this is such and honest and powerful post with the best possible ending of acceptance. Sally will be Sally and fluff is just a bit of dressing not essential to the great lady that we get to see and hear about. I love your writing style and all that you share. Carry on Sally.