Comment by Cinder B. Rand on November 1, 2013 at 3:21pm

Dear rfharp,

 

Hi there..I have been thinking about your question for a while.  I wanted to answer this as truthful as I could (not only to you but for myself as well).  This really made me think about how I feel about not having any hair with a realistic vision and have I been jealous when I look at others and their hair and my lack of any.  I think accepting our condition is one thing and missing our hair is a whole other story.  I know what you are writing about missing certain things about having hair i.e. (good and bad).  I lost my hair (all of it) about 6 years or so ago.  After that I got cancer and people would say to me “well, at least you will not have any hair loss, it’s already gone”  Why anyone would think that would have made me feel better was mistaken.  I think I understand all of the things that you hate about scarves, wigs, and so on and just being bald!  Although I try to never assume that we all feel something in the same way.  I have some beautiful wigs and I go through curly, straight, expensive, inexpensive and the list goes on.  There are days when I am fine with it and then days I just do not want to deal with it at all.  I joke about not ever having bad hair days anymore but it hurts.  I find the wigs hot and after a few hours uncomfortable.  I do not like if I go somewhere to eat and there is a certain cooking oil in the room (the air) it goes right on my piece.  I think about, oh great, now I have to go home and wash my piece that I just had done.  Silly I know but very real to me.  For people who do not go through this, I am not sure that they completely understand, and why should they.  I never thought about these things until I lost my hair and everything else on my body.  I think I really miss my eyebrows and my lashes.  I had great hair and I miss it all of the time.  I am always amazed the days that go by and I did not think about it for one whole day.  I had great thick eyebrows and lashes and great hair.  So I am not sure if the word is resent, jealous or just real feelings for us.  How could we not feel some sort of feeling, loss or sadness (whatever that is or whatever we want to call it for all of us)?  I do not think you are being a whiny baby I think you are expressing what you feel in real time in a very real way.  Lucky we have each other to do this with.  I met a woman who is in her 90’s and she has had alopecia since she was a child.  I took her to meet a number of us a few years back at a fundraiser.  She cried as she was shocked to see so many of us.  She shared with me that when she was a young girl that her parents made her feel ashamed and that she never had anyone to talk to about this.  I am pleased that she found us even though it was much later in her life.  I am so pleased that I get to write and communicate with people such as yourself and at least we can share our feelings.   Sometimes I am just tired of it, putting on lashes and the wigs and always I am a little worried about does the piece look ok?  Are my lashes on right?  Those thoughts go through my head.  I hope I can one day be ok with this part of my life and who I am and what this has made me right now at this time.  Sorry for the ramble but this particular question you presented really made me think.  Thank you for that.  Be strong, you always have all of us to vent to and share with.  Peace Cinder

Comment by Liz on November 2, 2013 at 1:44am

What a great share. Thanks Cinder. I can relate. I appreciate the question, rfharp. You really got us thinking and connecting. I'm happy to hear the woman in her 90's can feel she's in good company now.

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