Personal story

In college I had this class called ‘Article Writing’ and in this class we had to write a memoir piece. So, I am going to share this piece with you guys. I plan on expanding this piece one day when I lived long enough to have many adventures and actually write a memoir. Also I have to be semi-important so people will actually care. But i’m babbling. Just enjoy a glimpse into my soul. (Hope that didn’t sound too cliché).

No, I don’t have Cancer

The thing I would least like someone to know about me is that I have Alopecia. I rather let them assume I have Cancer. I hate answering the ever popular questions “What’s wrong with you?” or “Are you sick?” When I answer it leaves this awkward silence that makes the room so stuffy that it threatens to strangle me.

When I describe myself I usually don’t mention my Alopecia. I rather have people ask me then for me to bring it up. Alopecia is a stupid auto-immune disorder that causes your hair to fall out. Basically what happens is my white blood cells attack my hair follicles and they all just either die or surrender. That is how I describe it cause the scientific way is boring, this way is way more interesting and makes people laugh. The scientific description is a medical condition which hair is lost from parts of the body. Two popular types are Alopecia Totalis, and Alopecia  Universalis. Totalis is when your hair falls out in patches, and Unviersalis is when you have no hair at all. I started out with Totalis when I was three and slowly made my way to Universalis when I was about four.

When those television commercials of hair products came on I used to change the channel. The girls with their long luxurious hair whipping back and forth in the fake wind. They were always so happy and their hair was always so perfect. It made me sick. I could endure the dumb infomercials of unnecessary items that cost “Only 19.99 plus shipping and handling.” I would rather be bored to death than feel inadequate compared to the models in those commercials. With skin the color of a caramel macchiato, eyes a deeper brown, kind of like tree bark, and my head as shiny as a cue-ball I felt inadequate matched up against these models. The one thing I do have against them is my devious smile. No one ever knew what I was thinking.

I chose to disconnect from reality. The only way I knew how to do that was to zone out in front of the television. But, the countless commercials made television hard to tolerate. My parents did not handle my Alopecia the way I thought they would. My mother relentlessly searched for medicine and home remedies to “fix” me. She finally stopped when she realized that I started to think there was something wrong with me. She never wanted me to think I was “broken” just because I was different. My father on the other hand still views me as a project. When I was growing up his favorite line was “We’re gonna get you a better wig.” I never understood why he felt I needed one. I thought it was to protect me from the lingering stares and obvious whispers about me. But I realized it was less about my feelings and more about his.

Standing in my parents’ dark bedroom I look at my father. He lies on their king sized bed staring at the muted television. I stand there fidgeting. I look at him wondering why he called me in here. He has a gray and white beard with specks of black. He just lies there, which makes me even more uncomfortable. The top of his head is shiny like mine but he has a ring of hair on the sides and the back. When he was done being intimidating he looked at me.

“I found the perfect wig for you.”

“I don’t want to wear them anymore.”

“No, listen. This one’s better. You can go swimming in it and play in it and it won’t get messed up at all. It’s just like having real hair.”

“Why do I have to wear them?”

“Fine. If you don’t want it don’t wear it.” He threw his hands up in exasperation.

He didn’t get it then and he doesn’t get it now. While both my parents accepted the fact that there isn’t a cure for Alopecia only my mom could understand my need to be treated like everyone else. My dad chose to hide me away, which always made me feel substandard. I felt like he was embarrassed by me.

My interactions with my dad were always different. He was a tad bipolar at times. He could be a real villain. I could clearly picture him in those old silent films wearing all black and twisting his mustache. Only problem was that he had a beer belly and it made the image in my head more comical than menacing.

Hearing “There’s nothing wrong with you” and  “You’re so pretty” all the time is more annoying than Dora the Explorer constantly saying, “I can’t hear you.” I really hate Dora. Constant encouragement is ok if you’re too young to understand that the whole world pities you. But being twenty-one it’s just as annoying as the sad stares I get from random people. People who see me see something totally different then what I really look like. The way I look to other people is like one of those people off the depression commercials, sick and dejected. How people get this idea in their heads completely baffles me. I mean my friends tell me I’m always laughing, smiling and look happy. Hell I even walk with a bounce in my step. So, for people to ask me when I’m going to croak, in a more tactful way of course, it just pisses me off.

People ask me all the time about my ‘illness.’ That causes an immediate eye roll if I’m paying attention. It’s the one’s that catch me off guard that make me want to hit them.

“How sick are you?”

“I’m not sick.”

“It’s ok. You don’t have to tell me.”

“I’m not sick.”

“I was asking about your illness, but you don’t have to tell me.”

“I’m not ill. What are you talking about?”

“Well, you didn’t shave your head did you?”

Eye rolling commences.

“No. It fell out.”

“What kind of cancer do you have?”

“I never said I had cancer.”

“Well, it’s ok I can tell.”

It’s usually older people who ask these seemingly stupid questions. I mean if I had cancer don’t you think I would know. I mean I don’t think I would forget if I had a life threatening disease. I may be spacey at times but I’m not a space cadet thank you very much. That is how I developed my sarcastic personality. Saying things with feigned sincerity just makes life so much more… well, the jury is still out on what it makes my life more of.

My relationship my father became strained when I developed alopecia and it became nonexistent when I refused to wear wigs. He wasn’t the kind of dad that was actively involved in his children’s lives. He was more of the dad that was physically there but had more “interesting” things to do with his time. He was checked out for all of my childhood and most of my adulthood. The last time we spoke was a year ago and he invited me to his house in Utah. Of course I said okay, but of course I didn’t mean it. Growing up right outside of Philadelphia, Utah is small potatoes, literally. The only time I see him is on graduation day. So, he’ll grace us with his presence this summer when my little sister graduates from high school.

A person’s reaction only upsets me when they are rude about it. Otherwise I just chalk it up to bad manners, and lack of social skills. There have only been two instances that I can clearly remember that I was moved to tears by a persons’ behavior. Surprisingly it wasn’t my dad who made me cry these two times, but he had the duty of making me sad every other day. The first time has been burned in my mind for almost sixteen years.

I was about six or seven years old sitting in front of my house. My house was huge for a twin. It had three floors, plus a basement and attic, six bedrooms, two bathrooms, two home offices and a piano room. My favorite part was the secret staircase, well it wasn’t really secret but as a kid it was, that connected the first floor to the second floor. It really was just a back staircase, but I loved to use it instead of the front stairs cause I could pretend to be a spy on safari, I had a very vivid imagination. For some reason on this particular day I was sitting in my front yard all dejected like my cat just died, meanwhile my cat was very much alive. I don’t remember why I was sad just that I was. While I was sitting on my front steps a little boy came up to me.

“Hi.” He was very energetic in his greeting.

Before I could say anything his mom came up behind him.

“Don’t talk to strangers. You don’t know this little boy.”

They walked away. I remained on the front stoop crying. The reason this memory sticks out is because I was wearing this cute bright yellow outfit my mother bought me. It was a tank top with hearts on it and shorts. How the lady mistook me for a little boy confused me. I was sad because I realized that it would continue to happen to me. The second event was sophomore year. Many of the freshmen did not know of my condition and they assumed like everyone else.

While most people kept their assumptions to themselves this one guy voiced his opinion about me on a video he posted to Facebook. In the video I happened to walk by him in the computer lab and that just made his day. He decided that I would be the topic of his three-minute spiel about nothing. I was oblivious to this video until a friend showed me. I understood the ignorance about my condition growing up because not even doctors knew what it was at first. But I figured that being adults we could discuss things like this in a grown up way. Well you know what they say about assuming, when you assume you make an ass out of you and me.

As I sat in the cafeteria of my branch campus, Penn State Greater Allegheny, tears streamed silently down my face. I watch the video in the cafe because I had no idea what I was in store for. As I listened to what he said about me I felt a wide range of emotions. I went from confused, angry, sad, then finally ended up at depressed. I was literally an emotional roller coaster and it sucked. I sat in my chair and cried and the more I thought about it the harder I started to cry.

“Don’t cry Mel. He’s stupid.” My friend Cort said.

“I stupidly thought that we were all adults here. You know? How am I supposed to be over it when people constantly remind me that I’m different?”

“Everyone’s different and it makes you…”

“Makes me what? Special? Yeah I’ve been hearing that all my life. And guess what different or special I still feel left out and it sucks.”

“I don’t like to see you sad. You want me to beat him up? Cause I will.”

I started smiling through my tears.

“I just want it to be over. Why can’t people just get over it?”

“Because people are immature idiots.

I sniffled in agreement. I liked to say from that point forward I never let another harsh word bother me, but that would be lying. Stick and stones may break my bones but words will always haunt me, so I tweaked the saying just a tad. I was never fully prepared for people’s reactions to me. Half the time I forget that I’m bald until there’s a breeze, or I hit my head, or people gawk. I developed a bad habit of giving people something to stare at. I’ll start walking funny, or make faces. Sometimes I stare back just to make them feel as uncomfortable as they make me feel. People used to treat me like I had a disability, and some still do. Like being bald means I have less of a brain or my common sense fell out with my hair. People are taken by surprise when all my motor and deductive reasoning skills work.

My mother knew how to connect to me. She always said the right thing to make me feel normal. Now I know that normalcy is overrated, but growing up I yearned to be just like everyone else. The countless dermatologist trips just made me feel sick and it scared me every time we went, and now I have an irrational fear of the doctor.

Talking to my father he has a different recollection of past events. Instead of him he remembers my mother wanting me to wear wigs. This is his memory and I find it weird that our recollections conflict. He stands firm in his belief but if he were telling this story he would be what one would call an unreliable narrator. He tends to think he was a good father. My father lives in an alternate universe sometimes. He believes that the mistakes he made just disappeared. Although, I forgive him it would be nice to receive an apology. Talking to him just made everything come into perspective.

So, maybe it’s not fair to portray him as an evil villain. But maybe just as misguided. Not having him be my parent was pretty tough. You would expect that him being present would make a difference, but attendance doesn’t count if you’re checked out. So, if parenting was a class he would get an A for his attendance but he would fail each test because the they would all be comprehensive since the day each of his children were born. My mother on the other hand was always the one building me up after my father knocked me down. She would be the only person I could actually get an accurate recount from, but that’s not possible because she’s dead.

The last conversation me and my father had face to face was June 21st, 2010, which was the day after my sister’s high school graduation. He stayed at my grandparents house cause my grandma thought it was nice gesture. She wanted us to spend time with him since we don’t see him that often. But my siblings and I spent the whole day upstairs waiting for him to leave. He thought we had something to do, he did not realize that we were avoiding having to see him. He doesn’t realize it because this is what we did growing up. When he was home we stayed out of sight. This was the norm, and he saw nothing wrong with it. I used to reach out, I used to try to connect, but the more he rejected this connection the less I started to care. Eventually I got hungry and decided to sneak downstairs.

“Are you still writing?” He asked

Caught. Now I have no choice but to interact. It’s always uncomfortable for me. There’s this tension in the air that only I can feel. I feel like he’s going to reprimand me for something. Even though I was nineteen and there’s really nothing he can do since he did not live with me. I walk into the living room where he is lying on the sofa bed. I stand in front of him shifting from foot to foot.

“Not really.” I say focusing on everything but him.

“Why not?”

I can feel the venom in his voice. Or maybe I’m imagining it. I’m not quite sure.

“Well, I don’t really have the time. I’m really busy with work.”

That wasn’t a full lie. I did work almost eight hours a day at Social Security, but I daydreamed most of the day and it wasn’t really that hard because I didn’t have clearance to do a lot of stuff. He gets up and walks to me. Man, I should have lied. That’s what I get for being honest.

“You have to write everyday. I’m writing a book…”

And that is where I zone out. Why listen when all roads lead to what he wants? Everything is about him or so it seems. I just nod and say ‘yes’ a lot to get the conversation over with. I look like I’m intently listening but I’m disconnected and he senses it. He lets me go, ending the conversation like he ends every conversation.

“I love you.”

But they’re just words. And words mean nothing without action behind them. As a kid you need to hear them but as you get older you need the words and the actions. While I had my full of his words, they just weren’t enough actions to make those words have a real significance to me. I run to the kitchen grab a snack and flee up the stairs before he changes his mind. I don’t say goodbye but neither did he when he left us for his simple life. A life for him to be an “author” and live out his life as twenty year old should. Free of responsibility. But being almost sixty at the time he does not fall in that grace period that twenty year olds get to “find themselves.”

I recently had a confrontation with my father. I reached out to him to help me write this piece and it did not go well. But I did not really think it would. I sent him a message on Facebook to get his view on my alopecia and our relationship and he gave me a completely flipped view of what I remember. Memories are not always accurate resource to retell a story. So, the contradictions between my memories and my dad’s are very interesting. And it makes me think back to those events. I have my belief and he has his. We are both stubborn in viewpoints. I believe I am right and he believes he is right. It does not necessarily matter who is right and who is wrong, but that whatever transpired between us changed the relationship forever. I see it as disconnect between us, and he sees it as normal. He doesn’t see what I see. It’s like he’s riding through life with blinders on. He is living his life apart from the reality of our situation, and all the time I try to explain he doesn’t get it. Everything to him is the way it should be, but how can it be ok when he’s several states’ away and does not think to call. And when he does contact its to promote what is important to him, his books.

Staring at the screen of my titanium MacBook Air minutes before class I get a Facebook notification on my phone. I open Facebook on my computer and read the long message from my father that ended with him giving me a ten-step guideline for help with my “problem” and an original poem. But the thing that stood out the most was the last line of his message.

“I do feel empathy for your plight and I again pray you finally one day get it .. it is not about me, but your self …. Bless you child … may your poisoned mind find remedy in your God.”

I wanted to scream “Who says that?after reading what he wrote. All I did was tell him in the nicest way possible that my life was no picnic because of the pressure he put on me. I did not blame him for my failures nor did I thank him for my successes because that was all me. But I did speak my mind, which is something I never do when talking to him. I guess he wasn’t ready but I was.

Forgiving him wasn’t the hard part. That was easy. I fell into the category of children who still looked up to their parents no matter what they did. So forgiving him was no problem. It was the letting go of the dream. The dream that he would be the person I expected him to be. I wanted him to be the dad in those television shows. I guess I watched to many sitcoms to know what was real and what wasn’t. I dreamed that he would realize what he lost and he come to his senses and just be my dad.  It’s all I ever wanted from him. I gave him many chances to do this, and when it didn’t happen again, again, and again I gave up on him. It was so hard to do but I had to in order to live.

Even though I gave him up I feel the emptiness, this void where he should be. Life isn’t fair, I know that first hand. But a girl can dream right? Living with this disorder has made my life a lot more complicated then I wished for. It’s always funny though when people assume that I’m an easy target because I’m sick or have low self-esteem. It makes me laugh because I’m not easy or a target. I refuse to play the victim even though I was the victim in certain situations. I refuse to believe that means I should give up and let them win, whoever they are.

My father really isn’t the bad guy. This is not what this is about. I’m not trying to bash him in any way. I truly do love him, although, I don’t believe we will have any contact in the near future. I can’t bring myself to put my faith in someone who easily abandons his children. Yes, he has made mistakes but who hasn’t. It’s funny cause even when I speak of his faults I want to defend him from me. All I ever wanted was to be daddy’s little girl, but instead I was daddy’s little disappointment. Of course this will never be voiced by anybody but me. But I’m done pretending that my past was perfect because it was so far off that I wouldn’t know what perfect was if it smacked me in the face.

Writing this piece helped me come to grips with reality. I can change how I look on the outside but it will not change how I feel, and it won’t change who I am on the inside and that’s what’s important. Yes, I had the epiphany that everyone has. I came to the ever popular conclusion that outer beauty doesn’t make you beautiful on the inside. How cliché right? Although, it is true.

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