Read carefully, because I'll only say this once

A few weeks ago, the three of us packed up and headed out of town right after Thanksgiving. We had made plans to meet some friends (and their three kids) at a water park resort. Our families have been friends for a long time and in fact we are planning a 20th wedding anniversary trip with them in the summer. They got married just a few weeks after we did.

Our rooms at the resort were not yet ready when we arrived on Saturday. However, we were informed that in addition to the water park passes we would receive, our Groupon package included free passes to the indoor amusement park just down the hall. We decided to go to the amusement park first and kill some time until our rooms were ready. The first ride I spotted was a huge Ferris wheel. I don't think I'd ever seen an indoor Ferris wheel. I mentioned to my family that I wanted to ride the Ferris wheel at some point. I was also interested in the go-karts.

Most of the members of our group decided to hit a ropes course first. When I'd gotten dressed that morning, I'd put on my swimsuit under my clothes. My look-how-prepared-I-am plan backfired when our itinerary for the day changed. Without the proper "lift and support" that a chick like me needs and requires from a bra, I decided not to climb the ropes course. It just felt like a bad idea. I sat it out and took some photos of my daughter as she climbed higher and higher. After that, the eight of us filed into a small theater containing a virtual shooting game.  You probably won't be surprised to learn that I came in dead last (this is what happens when you are raised by pacifists and don't learn to shoot). Next, the kids got in line for a trio of climbing walls. While we waited, the four adults took turns paying a buck to sit in a massage chair that either felt really good or hurt like a sumbitch, depending on your perception.

Soon, we received text messages that our rooms were ready. We quickly formulated a plan to haul our luggage from our cars to our rooms, head to the water park, and then come back to the amusement park that night.  We figured we'd be all swimmed out but would be up for more fun. "We can do the Ferris wheel and go-carts when we come back," I said to my husband.

We spent a fun afternoon at the watermark. We bobbed around in the wave pool and rode all of the slides we could find (the place is massive). The grown ups shared a couple of overpriced adult beverages. The kids had a blast.

Later, we headed back to our rooms to shower and all that jazz. Our friends went out to dinner but we weren't that hungry so we just stayed in our room and had some snacks. Once they were done eating, we met them at the amusement park.  We rode the go-karts first.  What a colossal waste of time.  The go-karts were run by Goober Pyle and his cousin Gomer. I mean, it was just unreal. They couldn't seem to keep the cars moving around the track. My daughter wasn't tall enough to drive on her own so she rode with me. Our car wouldn't go faster than walking speed. "Let's not do THAT again," she said as we climbed out of our craptacular vehicle.

The kids all had game cards with cash on them and wanted to play arcade games. The games in the arcade area can only be played by using one of these cards. I played a couple of games with my daughter. However, my feet were starting to hurt.  Walking barefoot on concrete at the water park all day had not been kind to my stupid bone spurs and plantar fasciitis. "Hey, I'm going to sit down over by the Ferris wheel," I said. "I'll just find a bench somewhere around there."  That way, the rest of the group could come and find me when it was time for all of us to climb aboard.

I couldn't find a bench directly next to the Ferris wheel, but eventually I did find one that was unoccupied. It was a bit farther away than I had anticipated but not outrageously so.  And so I sat.  I watched people being flung around on the crazy ride that was directly in front of me. I played Words with Friends on my phone.  I checked Facebook. Eventually, my kid ran up to me and flung down some junk on the seat next to me.  It was her winnings from the games, the kind of trinkets that kids love and parents hate. Like miniature slinkies that always seem to come pre-tangled. She then turned and ran back towards the arcade. I assumed she was going to play more games.  "Just how much money was on those pre-paid game cards?" I thought.  I continued to sit on the bench, taking in all of the people and goings-on around me.

Finally, I saw our whole group headed in my direction. I gathered my kid's crap (I mean winnings) and jumped up from the bench. "Can we ride the Ferris wheel now?" I asked.

My husband gave me an odd look and quickly responded, "We just rode it."

The ride that was between me and the Ferris wheel had blocked me from seeing that everyone got on the ride without me. When my daughter had brought me all of her stuff, apparently she was supposed to ask me if I wanted to ride the Ferris wheel, too. You know, the ride that I had mentioned multiple times during the course of the day.

I know that my reaction would not seem "normal" to most people. I immediately felt like I might cry.  My daughter realized that she had made a mistake and apologized.  I couldn't seem to reset myself, though. As a mom, I sometimes feel like I am forever "taking one for the team."  I know that not everything is about me, but can't something be about me? Ever? It was the one bleeping thing I had wanted to do!

I turned and walked back down the long hallway towards our room. Everyone else stayed behind - I'm not sure if they played more games or what happened after that.  Later, both families gathered in our friends' room for games. I didn't want to give the appearance of being a jerk, so I went over and sat down for a few minutes before retreating back to our room. Honestly, at that point I kinda wanted my own room.

Here is what I think most people would think if they were left out of an activity: "No biggie. I'll ride it next time."

Here is what I thought: "I feel unloved every day of my life. This just proves that no one thinks I'm even worth the trouble to make sure I am included."


I'm going to tell you my secret now.  There are reasons why I am much more fragile than I want to be. I am generally pretty honest about the fact that I have vitiligo. It's hard to hide. However, what I generally don't mention is that I've also been battling alopecia areata for about four decades now. That's the fun thing about auto-immune disorders - you seldom get just one. Here's hoping for lupus and diabetes!

Why do I keep it a secret? (Well, as much as I can, anyway?) It's hard to articulate. Other than a few close friends and a brief mention of it at church one time, I generally just keep it to myself. When I talk to someone, I don't want them scanning my head and wondering what they can or cannot see. I don't want anyone suggesting a wig to me or telling me about their cousin who has it. And I mostly definitely don't want to hear "it's only hair." If you don't think it matters, pull out some big chunks of yours and see how that works out for you. I know that sounds mean-spirited, but that's just how I've internalized this stuff. What I do know, and what I can articulate, is the lasting effect these conditions have had on my self-esteem. 

I don't know what it's like to be carefree and ride around with my windows open.  Windy days drive my anxiety to a whole new level. Swimming in a public pool or water park is challenging at best. The only reason I do it is so that my daughter doesn't have to miss out on fun times just because of me. The reason I didn't start going to yoga until I was 40, despite years of curiosity about it, was that I couldn't bear the thought of having to hang my head upside down in front of other people. I guess the good thing about middle age is that you start to realize that people aren't looking at you as much as you'd feared they were.

If you've ever looked at me and thought my hair looked something-close-to-normal, it is only because I have had four decades of practice. My outward appearance is all smoke and mirrors and voodoo and black magic. I don't know what it's like to be wash-n-go (I'm sure jealous of the people who are, though). Getting ready to leave my house takes forEVER.

About a year ago, all of the eyelashes fell out on my left eye and grew back in with no pigment (thanks to the vitiligo). So, mascara went from being a decorative tool to a necessity.

I have to make sure I am never in a position where someone might need to touch my hair for some reason.  When I was in elementary school and the school nurse came through to check all the kids for lice, my mom made sure that the nurse took me into a separate room before poking at my hair with a tongue depressor.

When I get out of the pool, I have to wear a hat. I have to be careful about how frequently I wash my hair and have to keep wear and tear to a minimum as much as I can.

The list goes on and on.

I'll never know what it's like to have some cute haircut. I've had the same haircut all my life because it's the only option. I wrote a blog entry a few years ago about growing my bangs out. It wasn't entirely true. They fell out so I had to come up with a workaround (no bangs).  Eventually, enough of my hair grew back that I was able to have bangs again. Which was good, because no one should have to be subjected to my forehead.

Over the years, I have seen countless dermatologists. I have endured cortisone injections into my skull, time and time again.  Nothing really works well.  I know more than I want to about the growth cycles of human hair follicles. If hair starts growing again, it may take 90 days.  So, if it does grow back, one can never be sure if it was the treatment or if it would have happened without intervention. It's a constant process of grasping at straws and being met with shrugging shoulders and "well, I guess we could try . . . " from doctors.

At Kohl's a few weeks ago, I complimented the cashier on her hair. It was long and black and shiny. And it looked like she had about a bajillion strands. I compliment people's hair all the time. It's genuine, but it's also because I'm just straight-up jealous. My kid has hair that some people would sell their soul to get.

When I was a little girl, I understood that I was different and that being different was bad. Different is ugly. I learned that for girls, beauty and hair are tightly intertwined. I became hyper-sensitive to any comment about my appearance. I still am.  When I was a teenager, I would look at myself in the mirror and think, "No one will ever love you enough to marry you."  I was proven wrong, though, because someone DID marry me (sucka!) But, he can't understand the depths of my insecurity and pain.

So, when I was left off of that ride, it brought up every painful feeling I've ever had about myself. It felt like a confirmation of what I'd always suspected, silly as I know that sounds.  I've been feeling a little bit down ever since, but I'm working through it. I know that my husband and daughter were not being intentionally unkind. 

The good news, if any can be found, is that I've worked pretty hard to make sure my daughter doesn't pick up on this stuff. She thinks she's awesome (no lie: the word "awesome" is usually part of her user name on her apps and games). I just need to make sure she stays that way.


Sam said…
You are so brave to be so vulnerable here. I honestly can't imagine how you must feel and what a daily struggle this must be. I really admire you and I know I say it often, but I'd really love to hang out with you,
Also, I would have felt really bad about the Ferris wheel too. That sucks.

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