I grew up in a loving family with two parents who exuded love everywhere we went and two brothers who eventually grew up to be my mentors, my champions and my best friends.
We were rather poor, but my brothers and I never doubted for a second that our parents loved us and were proud of us. And their love for us was never more clear than when we needed them. My brothers were quite accident prone and spent a lot of our childhood in emergency rooms with sliced open hands or broken bones, and our parents always made a point to be there through every part of it.
I wasn't quite as accident prone as my big brothers, but I've probably had to endure the most pain of any of us.
I woke up one Friday morning (the Friday before Labor Day) in the seventh grade so excited for a long weekend because my family and I were going to drive to Granny's house in eastern Missouri to see my mom's whole side of the family. I couldn't wait. But the events of that morning overshadowed everything that happened that weekend. As I got ready for school, I was going to pull my hair back with a headband, and I notice a bald spot the size of a softball near my left temple. It seemed to have just appeared over night.
The next several months were filled with doctors visits and tests all that reveal nothing. All the doctors could do was tell my mom this was some kind of phase. They had no answers.
So we lived with it four about four years, just thinking it was a phase. Knowing there was nothing we could do.
All they while my hair continued to fall out. I'd go from wearing a ponytail one day to just being thankful I could cover all the spots the next day. The kids at school got word of my thinning hair and treated me so badly.
They called me names, told me my thinning hair was my parents fault because they were neglectful parents. They'd spread rumors about how I got the bald spots or just make fun of me about it.
I'd go home every day from school crying because some kid in my class or someone on the bus invented a new nickname.
My sophomore year of high school, a doctor told me I had Alopecia Areata. He seemed to understand a little more of what I was going through than the original doctors I went to although his prognosis was about the same as the other two - just a phase, nothing he could do.
So high school went on, and my hair loss continued. Girls made fun of me, saying I'd have to start wearing a wig one day. Some girls even told me I had cancer.
I found a new bald spot the night before I had senior pictures taken, and my hair loss had gotten so bad by prom that my hairdresser had to use pieces of cotton to give my "hair" enough volume to cover all the spots. Finding enough hair to attach bobby pins to my cap at graduation took the work of at least two of my cousins.
College started, and my hair loss progressed. My parents noticed a change in my personality.
All I wanted to talk about was my hair. I'd started wearing hats almost every day, and I never stopped touching my hair - just making sure everything was covered. I walked with my head down everywhere I went because the slightest bit of wind revealed this horrible secret I couldn't let anyone in college know about.
My grandparents stepped in at this point and took me to a dermatologist in the city who told me I'd gone far beyond Alopecia Areata and had evolved to Totalis. He told me what I was experiencing wasn't, in fact, a "phase," it was a problem with my immune system.
He was brutally honest with my grandparents and me and said my hair loss was so advanced there was not much he could do. He said there was too much hair loss to do shots and put me on a regimin of Rogaine (extra strength for men) and topical steroid. But he didn't promise anything and said the best thing for me to do was buy a wig. He said I should get one right away while there was enough hair left on my head to match colors.
I was crushed.
A wig? That meant this thing was bigger than me. That meant defeat.
But I refused to cry in front of my grandparents. I put on a brave face as they drove me (silently) back to my college campus. Later, Grandpa told my mom how brave I was because he knew I was heart broken.
I think I was in denial about everything the doctor said because I never thought much about getting a wig until one day when Mom called me at school. I always knew it was bad news when the phone rang off campus because the only off-campus calls I received was Mom with bad news.
My parents, my grandparents and my aunt the hair dresser made the decision for me. I was going to skip classes that next Monday and go buy a wig. I was so mad at them for not giving me a choice.
It was so serious for them that my parents sent my aunt the hair dresser and my uncle to pick me up at school that weekend (I didn't have a car) instead of riding home with my cousin who worked in the same town where I went to school. The wanted me to talk to my aunt about wigs during the 40 minute drive.
It didn't help. I was still scared. I walked around my hometown that weekend feeling like it was the last time I'd see it the same way. When I was at home, I'd cry. My dad cried and swore to me he'd cut off every inch of his hair if it would save me an ounce of pain. Mom cried, even my big brother got teary. My other brother called from the Army to tell me he loved me.
And on Monday, Mom, Grandpa, Grandma and my aunt piled into Grandpa's van and headed for Topeka. We met up with my cousin, also a hairdresser, and went to the mall where I picked out my first wig. A pixie cut by Renee of Paris. The second I put it on, I felt like a new person.
I looked in the mirror and smiled at my reflection for the first time in six years. I didn't see what was missing. I saw me. My cousin walked me around the mall to prove to me that no one could tell I wore a wig. Mom said I could have worn any style or color in the store and pull it off.
Grandpa and Grandma still have the picture of me from 11 years ago, sitting in the window of their china hutch. Me in my first wig, me feeling confident in myself for the first time in 19 years.
Back at school no one seemed to notice. They all just thought I got my hair cut. I wore that poor wig every day for more than a year. In that time, I found a group of friends who admired me for what I'd been through. Who reminded me that my hair loss, my wig did not define me.
When I got to go without the wig for the first time, they cried tears of joy with me, and when my hair fell out again a year later, they went with me to pick out a new wig. They helped me prepare a speech to tell my first serious boyfriend that I wore a wig. They've cried and rejoiced with me through every phase and helped lessen the pain of the kids back home who made fun of what they didn't understand.
Now, I'm 29 years old, and I've learned a thing or two about my disease. I have Alopecia Universalis now. I got my eyebrows tattooed about a year ago and enjoy experimenting with different style wigs. Playing with the color. Most people who know me know I wear a wig. I'll never be the kind of person who's comfortable going out in public without something covering my head, but just being OK with people knowing is worlds from where I was 17 years ago.
My family doesn't talk much about what I've been through, but Grandma will occasionally comment on how much hair I have at different times, and Mom and Dad will comment on my new wigs.
I can joke about my hair with my friends and family. Sometimes it still catches them off guard when I make jokes, not because they can't take but I think in all my pain I underestimated what it did to them.
I never considered how Mom felt when I'd crumble my face in her lap and cry myself to sleep because I found a new spot. They couldn't take my pain away, and they couldn't make my hair grow back. They were helpless and just had to sit there and watch their only daughter struggle.
I'm married now, and spend most of my time at home without my wig on. My husband plays with my "peach fuzz" and tells me that he loves me with or without hair, and I know he means it. And I still struggle some days with a desire to be normal, but I know things could be so much worse.
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