Being Overlooked as an Ill Eighteen Year Old

Eighteen…I was very much an adult. However, I was very much so a young one. A young, naive adult that still believed in the tenderness the world would lay upon me no differently than how I was as a child. I had been diagnosed with Ulcerative Colitis when I was thirteen, and health problems were nothing new to me. I had unknowingly been placed on a chemotherapeutic drug to remain in remission without ever being told. I became aware of this once I became infected with the deadly virus that punctured my interior, and the drugs that left its mark on my exterior. This was HLH, and the various drugs such as steroids that tore my mind, body, and ultimately my soul, apart.

Since I had a past history of health problems, I was sentenced to Children’s Hospital of Oakland that had already given me my colonoscopy when I was diagnosed with Ulcerative Colitis. Looking back now, I would have insisted on being transferred with the adults. Children’s Hospital of Oakland was fairly inconsiderate- instances where someone asked me if I was “okay” while bleeding on the floor and walking past me, and my first round of chemotherapy the nurse had forgotten to start it after hours I thought it was going. Fortunately, I was transferred to UCSF for my bone marrow transplant which was much nicer and less clumsy.

Staying at a children’s hospital when you’re eighteen? There were little things, such as the food portions not being large enough for me, but ultimately I never felt the compassion as the young children. Yes, I did use profanity when I was in unbearable pain, and yes, I did question everything that was happening, because I understood. There were some nurses that treated me splendidly, while others I felt would have given me a larger smile perhaps if I had been a child.

Organizations found a way to not accept me, such as when my family and I tried reaching out to the Make a Wish Foundation. Maybe turning nineteen within two months of my hospitalization was the reason.

One non-profit organization in particular I felt especially overlooked upon because of my age. The organization is called Peach’s Neet Feet, and they specialize with designing shoes for severely ill children up to the age of eighteen. I did, at the time, fulfill the age requirement when I submitted my application. I created my design on the proper form while I was in and out of chemotherapy treatments, and my mother helped me send it through the mail.

However, I never did receive those shoes. The first time emailing PNF was during my time in isolation, and it was through the email on their website. I did this a few times throughout the past couple of years, but I remained ignored, and not replied to.

So recently, I used my last resort to post on their Facebook page. I civilly stated I never received my shoes, my emails have not been responded to, and that I was disappointed. To my surprise, Peach’s Neet Feet BANNED ME.

A survivor that had been fighting for her life, banned form a page she had tried seeking comfort in. I noticed my post was deleted, and I no longer had the option to post, comment, or follow them.

I feel insulted, and I am baffled that I was not apologized to and helped. Instead, I was banned! This made me conclude that the censorship with this organization is extreme, and they will do anything not to have negativity to prevent them from getting “donations.”

So I finally found the founder’s personal email, and of course, her response was concrete, robotic, and lifeless. Obviously, the PNF Facebook page is only for positive, no-questions-asked comments!

If I was a smiley, cute, undeniable five year old? Probably would have had my emails responded to, and I probably would have gotten a much more compassionate reply, and been offered some new shoes. I do believe this was a type of age discrimination, especially with the founder’s lack of compassion in her response. She did mention that applications get lost in the mail, which means children may be having their applications lost and be disappointedly awaiting for their shoes to arrive. How many children are just waiting to hear back from PNF then and are being “overlooked”?

If you have a child or young adult that has not received their shoes, you be professional and assist them. I never ask to pitied, but I do expect the same treatment, regardless of my age.

Children are people. They have their own sins and wrong doing just as adults, but in their own way. They have the ignorance of not completely understanding what they are going through, and if they make it to remission into adulthood, they may not have much memory of the agony.

To conclude, I do not need a wish from the Make a Wish Foundation, I do not need a pair of shoes from a suspicious organization called Peach’s Neet Feet that choose who they decide to respond and create shoes for. I will forgive this organization, but I will stand up for myself.

I have my Faith, I have my own strength, and I have the willpower and intuition that pushed me through a deadly disease, and got me to where I am today.

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NOV.23

The pain that slowly eases

and the one that comes along to replace

I have no room to complain, but I remain accommodating.

I was once born a child with all that common sense can give

and all that an adolescence can take

in its attempt to reach maturity.

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Water Inhibited

Water Inhibited

Took this years ago

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February 9, 2014 · 4:05 am

In the car I wrote this today

Well, I didn’t actually write this today.

I probably titled it that because I wanted to remember where I was. I was in the car on my way to an appointment regarding my upcoming bone marrow transplant I had. I was bald, weak, but not scared. I felt this strong presence with me whom I believe was God, and that whole day felt like I was in constant prayer. When I wrote this, I didn’t realize the context until after I looked back to read it. I was in this surreal and peaceful state of mind, and I felt the words pouring out of my soul without even thinking. Maybe there is something to how art comes most easily when effortlessly, especially at the prime of one’s spirituality.

In the car I wrote this todayImage

 

And someday you will be hearing my words as I’m writing, writing, away

 

Today is a day of happiness of lies in an unforgettable disguise

 

Taken by surprise.

 

I am overwhelmed with subdued submission to your throne

 

Life is a paradoxical whirlwind, a carousal which I am placed onto

 

That horse as his crown

 

How in a snap it’s flipped upside down, my frown

 

Lifting up onto the ground

 

Oh forsaken love that seems so far above!

 

Trapped in the waters, now euphorically trapped with my Father

 

Redundancy now seems like a lack of conscience subsided into little laughs of joyous numerical answers

 

Taken by displaced friendships lost in ever grown trees

 

Alas in the petals of water lilies

 

Continuity of purity may seem like impossibilities,

 

yet we have limitless capabilities of our possibilities.

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Sophie

Sophie

Caught up in life’s moments.

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February 1, 2014 · 5:39 am