Oh (H)Elle

I am a 33 year old disabled inner city high school teacher turned public speaker and spokes model. I spend 99% of my time in my bed or on my couch looking out into the world via cold snowy window in Minnesota. I love my dogs, family and trashy reality TV. I am chronically ill AND chronically fabulous.

15 years of (H)Elle.

I’m living.

Its not cancer. Its never cancer. I didn’t expect to live this life. When you graduate high school they ask you to write an essay of where you see yourself in 10 years…my dreams never included my reality. My essays never spoke of what my true existence is. To be honest, I am surviving; I am not living.

I am Elle

…and, I’m sickly.

My essays never included illness. All of my paragraphs consisted of abilities and aspirations. I wrote about changing the world, making an impact, excelling in my field. Never once in my teenage and early 20s brain was it possible to live life in the way that is my current day to day.

…but, I’m failing.

The truth is though, in my short time, I excelled. I made an impact. I did change the world. But yet, everyday I feel like I am failing. I am chronically ill. What does that truly mean aside from the fact that I am sick all the time? It means its not cancer. I don’t have an end game, I don’t have a diagnosis everyone has heard of and runs 5ks for. I don’t have a list of doctors to choose from that specialize in my diseases. I don’t get the look of understanding when people see me in public and I do not get an empathetic smile when I am parked in a handicapped spot.

…but, I’m tough.

I am 33. I have been ill for 15 years. I got sick right at the tail end of senior year of high school. It all started with a 15-pound cyst on my ovary and has lead me into a world where nothing really functions properly. I fought hard to graduate undergraduate school in 3 years, grad school two years later and taught Spanish for 10 years…all while incomprehensibly ill. That is not weak.

..but, I’m crazy.

I have no mental illness, but I am insane. I have worked so hard my entire adult life to be what turns out an over educated daytime TV viewer. I pushed through for years making it to work on time every day. I refused to take sick days unless I was hospitalized. I would be found unconscious in snow banks, passed out on my classroom floor, and I would be bleeding nonstop ALL with a smile on my face. Looking back, I was ridiculous. I remember the day I had to leave school in an ambulance because of an anaphylactic reaction, I left 3rd period and was back to finish off the last two class periods of the day. I wouldn’t quit.

…but, I’m tired.

I refuse to let my illness stop me. My physical self is unable to do much and I am usually so exhausted I cannot be “normal” but I refuse to act like I’m sick. I cannot let myself admit defeat. I try my hardest to live the most normal life I can in anyway possible. If I wasn’t so stubborn and hard headed my illness would have taken me long ago. I just want to be done having to fight this nonstop battle.

…but, I’m pretty.

As a kid I was taught that calling yourself beautiful was wrong. I now scream, loud and proud, I am gorgeous. Most of the time, I don’t look sick. In fact, I look better than most healthy people. This makes my life odd. I can’t tell you how many doctors have done double takes when they see my chart or medical information. I always say my history is like a suspenseful mystery novel. A real “didn’t see that one coming” kind of story. My face and body appear to tell one tale while inside it is a totally different book.

..But, its not cancer…there’s no 5k, no telemarketers will call asking for donations and there isn’t an ice bucket challenge.

…But, I am not ALIVE.

Life is not being homebound stuck in bed. Living is not losing consciousness while trying to do normal everyday tasks. Adulthood isn’t being completely dependent on others for everything. Life isn’t feeling horrible guilt because you cannot survive on your own. We’re all dying, that’s the only true known in this world. I just wish I could live a little more before I really die.

I wish I could sit in traffic and sing along to the radio. I can’t drive.

I wish I could go to the grocery store and pick out my meals. I cannot eat food.

I wish I could take a bath and soak in bubbles. I can’t bathe long.

I wish I could sleep 8 hours. I need at least 12 to function.

I can never really truly be alone. I have to have someone with me ALL THE TIME because I go anaphylactic and because I lose consciousness. I am a 33-year-old woman child. I have the mind of a woman, mature and strong but I have the body of a drunk toddler, weebly wobbly and out of control. I can’t be left with sharp objects or in unpadded rooms alone.

So, no, Its not cancer but I promise someday you will have heard of my disease because 15 years ago I wrote an essay about how I would change the world, and I still fully intended to do that exact thing. I have survived 15 years of hell and know I have at least 15 more inside of me.

I’m a living, pretty, tired, tough and crazy, sick woman-child who refuses to give up. I may feel like I’m failing when I think of where I could be in life, but I refuse to let illness keep me down.