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.