Fragments of the Fragmented.

I've gone through 6 blood tests to find something, anything wrong with me. Turns out, I'm completely healthy. It's deflating to not have anything underlying to treat, but I realize it's also good that I'm not secretly dying.

Every doctor I visited said the same thing after giving me their results, "has anything traumatic happened to you a few weeks before you started losing your hair?"

Yes, of course something happened. However I'm not willing to give credit for my disease to a man I worked years to get away from. But I have concluded, privately to myself, that his desire to give up his paternal rights to his three daughters was the "traumatic" event. I spent weeks, possibly months...maybe still currently (if I'm being honest) in distress over this. The pain he had caused me by dismissing his children as if they've never existed, a mother's pain and guilt, immeasurable. It's as if he had hit me with one last (lasting) blow. I was KO'ed, he won. To give him credit for my Alopecia Areate (AA) disgusts my deepest self....yet, I feel it must be true. 

I've watched my scalp try to replace my lost hairs...and then lose them again shortly afterwards. I've watched the progression of my AA expand its boundaries weekly. What was once a bald spot the size of a nickle early this spring is now just coverable by the palm of my hand. April to November. It feels like I've been stressed for longer than 7 months. 

AA has a sense of humor. When doctors tell you there's no underlying condition to treat, they like to tell you to relax and not stress to prevent further loss...but then they tell you that AA isn't predictable. It can recover and possibly come back 5 years from now, or it can lead to complete hair loss over the entire body. How can one relax when a good chunk of their scalp is bare...and expanding with "unpredictable" as the statistic for the disease? I fretted over this for months before I decided last month to not focus on the hair I was losing, but to love the hair I have while I have it. I've also taken up sleeping, something I didn't have the time to do routinely. The combination of the two has resulted in a calmer mind in addition to more hair regrowth than I've seen in the 6 months before that. I can almost measure the regrowth with a ruler, 3 millimeter sprouts of hair litter the bare parts of my scalp. I've decided to disregard the new loss I incurred this weekend, though...a quarter inch loss...it looks like a lot when you hold those hairs between your fingers and find the fresh white spot on your scalp to measure 1/4 inch... I'm optimistic though. I figure if I can keep my new growth, in 6 months time it'll be long enough to cover the new loss and by then I may have new growth starting there too.

I probably seem neurotic measuring growth and loss. But I feel I must so I know what direction my AA is going, even though I'm aware I can wake up tomorrow without any hair attached to my head. It goes back to the sense of humor AA has, twisted and challenging. 

Bad hair days to feed my soul

The stream of water from the shower is mixed with my tears. I sat in the tub until the water turned cold and watched my hair dance down the drain. I knew what was happening to me, but I had a good sense of denial about it. Denial only gets us so far though, and finally, after months of hiding, I had to tell him. Telling him made it real. There was no more denying from here on out. I gathered myself in my towel and wiped the fog from the mirror. Here, I partook in a new ritual of mine. Like a gardener inventorying her crop, looking for new growth, and assessing the damage cause by disease. There, another one had fallen out; the lack of roots proved it too had fallen victim to the disease. Each day I study each one, looking for some sign of hope that the damage will be localized. How far is this going to go? How much more will I lose? Totalis? Universalis?These question, unknown by even doctors, torment me. 

A sense of identity, a symbol of femininity, vitality, and health. I had no idea how much my hair defined who I was until I began to lose it. Alopecia Acreata, damn you. Damn you for stripping me of my self esteem, for taking a strand of my confidence with each hair. But it doesn't care, it doesn't discriminate. This autoimmune disease goes after men, women, and children without sympathy. This has been a part of me even while I had denied it's existence. But now that the denial was over, changing the part in my hair and putting it up in an ever-shrinking ponytail in effort to camouflage my bare scalp was no longer enough. It's real, whether I hide it or not. 


It took me three month to admit to it, and two days to mourn the self I had identified with for 30 years. It seems shallow to mourn longer, yet two days doesn't seem long enough and I fear there will be more dark days ahead of me. I know I'm more than my hair, but I also know that it was just as much a part of me as my fingernails or my skin are, either just as devastating to lose. 


The vessel for my spirit in this world has malfunctioned...and there isn't a spare...but, I'm not dying yet. I may look ill more often than not now due to missing patches of hair, but my health is still good and there are varieties when it comes to hair pieces. I had recently discovered that not only are there extensions and full wigs, but also crown wigs, half wigs, 3/4 wigs, and band wigs. In fact, today I purchased and sported some new hair which enabled me to wear my hair down, finally! There is enough out there to see me through the progression of my disease...yes, my disease. I haven't totally accepted it, but I'm in the process of doing so.  


And Mister Man, his love for me exceeds the superficial. "Hair or not, I'm still going to be your husband, we're still getting married. And when I lose my hair we can wear each others' wig."


Alopecia, welcome to my journey. You're adding a higher degree of compassion to my spirit. 

2000, 2001, 2002, 2003, 2004, 2005...

Touch.
The simplest, most basic form of conveying emotion.
We don't notice it unless it is unwelcome or until it is missing.

Touch is something I do often, I touch people I love constantly. To not touch someone in my life seems impossible to me.
Hugs, running fingers through their hair, holding hands, cheek kisses, linking arms. These are all common forms of touch in my life.

Sometimes unwelcome touch becomes so normal that we begin to not notice that either, until it is also missing and eventually forgotten

I sat down a couple weeks ago to watch the pilot of a show called Boardwalk Empire. In it was a scene of domestic violence so intense, it reminded me of what was now missing in my life. I watched in tears, not wanting to look but not able to stop. I could feel myself shaking with fearful recollection. As I watched the scene unfold on the television, I realized a number of things that had not occurred to me before:

1. I was never okay with how I was treated in my first marriage.
2. I was not okay with how I lost 2 of my pregnancies.
3. I'm still not okay with either of those.
4. I have never truly forgiven HB for his actions even after it stopped.
5. This is what ruined our marriage. THIS, which sadly began before we were married.

What was astonishing to me was that I had forgotten the details until I was watching it. Once, in 2005, I admitted to my father that I was a victim. That once was so humiliating that I dismissed all past and future occurrences from that point on. Dismissing is not the same as forgiving. I hadn't even realized this is what I did with it. And the details, the details I wish I could forget all over again.