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Please look at me, not my disease
My original title - "See Me For Me, Not My Disease"
By Jessica Keller

(Updated Saturday, August 27, 2005, 6:10 AM)

Starting a relationship with lies? Not the best start. But, when all of your other options have failed, what are you left with? This is my dilemma.

I'm a 38-year-old single woman with central core disease, a rare form of muscular dystrophy. One of my biggest fears is growing old alone. I fear growing old and dying without ever knowing what real love is. Men come and go all the same way. I can meet a man and there may be an attraction. We talk about anything, and all goes well. But as soon as I tell him I have muscular dystrophy, he walks away.

I may meet a man through a mutual circumstance, and he pursues me. He initiates the conversation. He flirts and shows interest. Then he asks the question, "Were you in a motorcycle accident?" "Were you hit by a truck?" I even see a gleam in his eyes as he is asking these questions. Always men ask these same questions, referring to the limp when I walk.

I realize it's now time to tell all. So I do. I tell him I was born without a hip socket. More questions come. I finally tell him I have a rare form of muscular dystrophy called central core disease.

Without a word, he turns and walks away as if I never existed. Stunned, once again, I shake my head in disbelief, walk away and continue with my life.

I am far from being ashamed of having MD. I am actually proud of having MD. This disease has helped to make me who I am today. But having a relationship has been a challenge.

Why is it when someone looks at you, he automatically thinks you were either hit by a truck or in a motorcycle accident? And why do his eyes seem to light up when he asks these questions? And why is that OK, but having MD is not?

True lies

I was taught to never lie but I find myself not telling "the truth, the whole truth, nothing but the truth" all too often. Why do I feel the need to not be open with this little secret about myself?

I've asked myself this question many times. I'm thinking about the answer as I'm writing this, but the answer isn't as simple as one may think. It's not as simple as I thought. Maybe I decided to make people get to know "me," not my disease. Maybe I decided not to give others a choice.

Now, my feelings about keeping this information a secret in the beginning have changed. Maybe I should tell everything when I introduce myself?

"Hello! My name is Jessie and I have a rare form of muscular dystrophy called central core disease. Goodbye!" It would save me a lot of grief, and I would know right from the beginning if this person was worthy of my friendship. Life is too precious to waste on those who are not worth it.

I see a couple that has been together and one is disabled in some way. As I look at them, I see true love, unconditional love. This is what I ache for. I am unable to find that one person to accept me for the whole me -- someone to accept even my broken parts. It's my broken parts that make me whole.

Someone once asked, "Don't you want to get married? Don't you want a family? You know, you're not getting any younger. Tick-tock!"

What kind of comments are those? Just because I'm single and not dating at the moment means I want to be alone for the rest of my life? No, it doesn't! Growing old alone and never knowing what it's like to truly love and to be loved is one of my biggest fears in life.

I'm tired. I'm sad. I'm lonely. I'm happy. I'm frustrated. I'm peaceful. I'm strong. I'm weak. I'm angry. I'm forgiving. I'm lovable. I'm creative. I'm funny. I'm moody. I'm irritated. I'm scared. I'm playful. I'm crying. I'm numb. I'm mourning. I'm accepted. I'm denied. I'm hurting. I'm healing. I'm lost. I'm found. I'm here. I'm accepting. I'm annoyed. I'm broken. I'm whole. I'm living. I'm intelligent. I'm confused. I'm a fighter. I'm a mediator. I'm a daughter. I'm a granddaughter. I'm a niece. I'm a cousin. I'm a sister. I'm an only child. I'm a friend. I'm an artist. I'm in pain. I'm disabled. I'm human.

Here I am. I'm just like you.

This article I wrote almost 2 years ago and that was just published in the Fresno Bee Newspaper on August 27, 2005 was not based on any one event or person. This was based on a lifetime of behavior from many people. My point for this letter was to bring awareness to people about how this sort of behavior, although it being human behavior, is wrong.
I use to, several years ago, spend a great amount of time looking for that one decent, kind, non-judgmental person. This is something that I should have known better to do. Thankfully I no longer spend my time "looking" for anyone. But, now at 39 years old, I have realized that I am very content in and with my life and with who I am. I have realized that life isn't about who stands by my side......life is about whose side I stand by.

Fresno Bee Newspaper Article