Saturday, February 25, 2012

Nicole's Narrative

Nicole had to write a narrative for school that relates to a real life experiences that teaches or show a lesson. She finally got it done. I think it is very good but also saddens me at the same time. I did get her permission to share it.  I do homeschool Nicole and she is enrolled in an accredited Christian homeschooling academy. 
I feel invisible sometimes.
It makes me very visible in many ways.
People judge me because of this invisibility, but that's because they don't understand. They of course don't see it.
What am I referring to? My illness.
This illness is very invisible to others, and this makes people judge me.
"Why is she just sitting out when we're all working? She must be very lazy."
"Why does she have a handicap placard? She doesn't need it."
"Why does she have to have special treatment? She looks fine to me."
These thoughts, although understandable, are hurtful.
I know people think these thoughts about me. Why shouldn't they? It's human nature. I'm guilty of doing the same thing sometimes.
However, one shouldn't judge. Just because somebody is different from you doesn't mean that they're necessarily bad. This concept that people have is called prejudice.
Again, it's human nature to have these thoughts. I consider myself prejudiced about some things myself.
However, I shouldn't be. Nobody should be.
Sometimes my disease is visible though. The thoughts are completely different then. They express sympathy more than prejudice.
"Why does a teenager have oxygen? It's sad that there's something wrong with her."
Or, they might be prejudice. I don't know.
Doctors are morons.
Why, you ask?
I don't know. I just know they are.
You might be thinking it's very negative of me to be thinking something like that. You might be right, but, no matter how right you are, it doesn't change the fact.
I've been misdiagnosed left and right.
"Oh, you have joint pain? Must be growing pains."
"Oh, you have shortness of breath? Must be asthma."
"Oh, the shortness of breath isn't getting better? Must be a stamina issue. You still have asthma by the way."
I've even been misdiagnosed when the results of a serious illness have been staring the doctors plain in the face.
I had a chest x-ray when I was four. Nobody saw any signs of something being wrong with my cardiopulmonary system.
I was sick all the time as a young child. Everyone thought it was normal when it probably wasn't.
I've been to a pulmonologist who should have seen something wrong. He never did.
I had an EKG when I was seven. The cardiologist who read it signed if off as normal when it would have never been normal.
I've had purple fingernails all my life. Nobody knew it meant something.
Only when my mom got a tiny bit more involved did the doctors realize that something was wrong.
Doctors only use you for money.
They don't really listen to patients and caregivers sometimes. Half of the time the doctors think that they are just being paranoid.
Why do people have to ask questions?
They're curious, of course. They want to know more than they already know.
But sometimes questions are very annoying.
And why do people assume?
They're just ignorant. I don't think there's any other explanation to this.
A lot of times assumptions hurt though.
"Are you going to die if you do this?"
"Are you going to die if you do that?"
"You're gonna die if you miss one dose of meds, aren't you?"
"You wouldn't be able to handle doing this, so I'm not going to invite you to do this."
"You're just going to hold us back if you come along with us."
I realize that I am a bit of a burden sometimes with my frequent resting and medicine schedule, but you shouldn't assume that.
Just because I might hold you back doesn't mean that you and I won't have a good time.
I'm sure you just don't want to be seen with a chronically ill person.
Sometimes you gotta fight.
Fight for what you need.
A lot of people don't fight. It could be because they're afraid to, or simply because they don't want to.
But if you do fight, you have a good chance of getting more than if you don't fight.
My mom always fights for me. For medication, authorization, insurance, doctors and a lot of other things.
She did hit obstacles along the way, but that didn't stop her.
She just kept going.
And sometimes, we get more than we expect.
Like that one time we got a trip to Hawaii because my mom fought for payment help with a new medication.
She was able to single-handedly change the distributor's policy, and I was honored to be patient of the year. With that, we got to go to the Global Sales Meeting in Honolulu, Hawaii.
That was pretty rewarding. I'm sure it especially was for her.
So sometimes, when you fight, you not only get what you want, you get much, much more.
And plus, somebody's gotta give those stubborn people a challenge.
Friends are amazing.
They care about you and love you.
They help you, listen to you, and encourage you.
Or at least that's what they should do.
Friends that are in similar situations than you are also amazing.
They have more understanding of what you are going through so they can help you better.
They might even be able to fight with you.
People are prejudiced
Doctors are morons
People are ignorant
Determination is a virtue
Friends are amazing
I guess the fourth point offsets the first three because fighting can turn all of those people and doctors into smart people.
And the fifth one is special in that it encourages the fourth point.
Of course, I don't speak for everyone on this.
Being prejudice and ignorant is just part of human nature.
Be idiotic might be too. Sometimes it seems that way.
Not all friends are helpful and good listeners.
But I think the fourth point is true in pretty much all situations. That point is probably the best point of the series.
I am so proud of Nicole for writing this paper. I am even more proud that she believes number four outweighed all the negative things. I have tried to impress this upon her. Yes, I know we have been through a lot of negative and bad things but there are good things and good people that we wouldn't have if it wasn't for those bad things.


  1. Jane, Thank you for sharing Nicole's paper. Nicole has had to learn a lot because of her diagnosis (and because of the lack of a proper diagnosis for many years). She is a remarkable young woman and she is learning a lot from you (like advocacy and fighting for proper care). Sending hugs to both of you.

    caregiving. family. advocacy.

  2. Hi Jane,

    you can be very proud of your daughter! I enjoyed reading it a lot. I mean it shows how much she had to go through but she is a strong personality and a fighter too.
    I know exactly what she is talking about and many times, I feel the same way. In the end, we are all responsible for ourselves and it means that we have to fight for what is valuable to us (and we have to advocate ourselves!). But we are not alone :-)

    Glad you posted it, much love to you both,

    Franziska San Pedro
    Flavor Designs

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