Weather for Headphones

My last year of high school, there was all this talk about a boy with special needs, a boy who was so allergic to peanuts that they banned chocolate bars from the school- even if they didn’t have peanuts, but they still had that tiny, tiny “may contain traces of” amount. People made fun of him before he was even there. They snuck chocolate in. The teachers barely enforced it. Knowing how allergic he was, I can’t imagine how miserable things were for him.

Like all companies, the ones which make drugs want to make the most money. How do you make the most money? You advertise. You appeal to the broadest audience possible. If you are in a TV commercial and you have allergies, it means red, water eyes and a stuffy nose. These people have perfect skin and plastic skmiles. They are not asphyxiating when their entire body swells up after accidentally eating a peanut. They are not scratching their skin to the point of drawing blood. They are not in tears. A TV allergy is a tiny inconvenience in white suburbia, easily solved with a pill.

Because this is all that people see, it’s all that they know. An allergy is like the common cold, but you can solve it with a pill. What’s so threatening about that? If your allergies are worse, or if your body acts differently, there must be something wrong with you. If you have watched any TV in the past 15 years, you’ve seen it- the stereotypical male nerd, the awkward, shy character. Their allergies become the punchline for a joke. The young, trendy, bombshell blonde is crying in her apartment. Her roommate walks in. “What’s wrong? Why are you crying?” “I’m not crying. SNIFF. Allergies.” Cue canned laughter.

One day at lunch, you throw a pea at someone. Totally benign, right? It bounces off and they toss something back. You can’t kill someone by throwing a pea at them. But if you feed a pea to someone who is severely allergic, they can die in minutes. This doesn’t make sense to most people- you can’t kill a person by throwing a pea-sized object at them, so how can eating one or being near a pea do the job?

A broken leg is an easy disability. Being blind is easy. Having diabetes is easy- you tell someone about it, and they will make an accomodation for you. You tell someone you have asthma, and they stop smoking near you.

Having an allergy is not easy. Because most of the things that happen are inside or hidden- in the stomach, in the ears and the eyes, in the mind, on the skin- it is never clear and obvious what that person is going through. If you tell someone to stop using this or to do this for you, and they refuse to believe that your problem is legitimate. They think you’re making it all up. They question your motives and they think you’re being paranoid. Maybe you’re just doing it for attention. Maybe you’re just selfish and manipulative.

I still remember when I was little, how it felt to have kids tease me by waving things with peanuts in my face. It’s absolutely terrifying, even with your mouth closed. Death is literally inches from your face and all you have to do is open your mouth, or have someone force it open for you. It’s so easy. It’s fucking scary. And because an allergy is something benign- something even easier than a cold, it isn’t taken seriously. If you can die to a peanut, you must be one weak person. You don’t even deserve to live on this earth if a legume can kick your ass.

But there isn’t anything wrong with me. I’m not making it up. It’s something I live with. It’s horrible, knowing that a one single malicious or ignorant person can control my life so completely. My day could be ruined in an instant- someone sprays perfume, and ten minutes later I feel like I am going to die. I have to change my entire day because of one person- I have to shower, I have to wash the clothes I wore, I lose sleep, and my body falls behind another day in healing itself. I can’t control it. My body is just different.

Now I wish that someone could ban all perfumes and fragrances for me. I wish that someone could understand this feeling. Even my own family, my parents, they barely understand it. My life will never be the same.

Maybe this is karma for never standing up for that boy.

My last post was 9/9/2009…almost three months ago.  A lot has happened since then.

Despite the problems with my health, I decided to tough it out and go to school.  I felt that I knew all there was to know, and that I’d find a solution quickly. so why waste my time at home?  It turned out that there was quite a lot I didn’t know…and a lot of things I could not control.  There were allergies I did not know about, chemicals that I was not allergic to, but which were so harsh that my skin couldn’t take them. There were things I couldn’t control either- like chemicals in the rain, or interacting with other people, or having to use laundry facilities which were shared with other people.

I survived the first month okay, but then it started to get worse and worse.  And finally, I had to cut my hair. It was too much of a liability- it caught things, and so my head and neck were constantly touching whatever was in my hair too.  Everyone has something that they are vain about.  And sometimes, with my skin, I really, truly feel ugly and horrible. But at least when that happens, I still have my beautiful, long hair.  I really loved my hair. When I cut it, it was like I was cutting off a limb.

By the middle of October, I was in a state where I was getting only 2 hours of sleep a night.  I was so exhausted and miserable that studying, sitting down to read, or going to class were huge struggles.  I finally made the decision to take the semester off and go home.

I felt defeated. I wanted so badly to be able to go to school and live a normal life.  I wanted to be with all my friends and my girlfriend, and I wanted to learn.  My whole life,I’ve looked for somewhere where I could belong, where I would feel right in the world, and Berea was that place.  It wasn’t perfect, but it had become my home…and I had to leave.  It absolutely terrified me that if I left, when I came back it would be just like my sophomore year of high school, whenI changed schools and I was a total stranger.  I didn’t want to be alone, but I had to.

I’ve been isolated and alone for most of the past month and a half.  This has been partly out of necessity (minimizing the risk of exposure to other environmental things/allergens) and…because I wanted to be alone.

I didn’t want people to see me like I was, defeated and miserable and a failure.  When you put all your hopes in something, and then that something fails, it really hurts.  I was hurt, and I spent all of my time in my room, alone. Most of all, I was tired of caring.  I was sick of feeling anything at all, so I distracted myself with video games and movies and music.

Maybe I wasn’t as miserable as I was when my skin was terrible, but I was depressed. Who wouldn’t be, after what happened to me?  But the few times when I did go out, when my best friend Greg dragged me out of my room, or invaded my house when I refused to leave, or when I saw my girlfriend…that was when I was the happiest. Then I watched Welcome to the NHK.

In Japan, there is a social phenomenon known as “hikikomori“.  It is a condition in which, due to personal, social, or other reasons, an individual will remain in their home or room for extended periods of time, isolating themselves from the outside world.  It usually affects young men.  It is suspected that 1% of the Japanese population is affected by it. Welcome to the NHK is an anime which focuses specifically on the life of a hikikomori. The similarity to my life was uncanny.  I started to realize just what I was missing out on.

Most importantly, I started to realize that I need to get out of this hole. I don’t know how long I will be like this, or when I will be able to find a way to come back. But I need to make the most of what I have right now.  I have a huge luxury that many others don’t have- time.  And I may have failed, but as long as I am creating something…as long as I am contributing something to the world, I’m not a failure.

I’m not sure what happens next, but that’s okay.