Her Life as A Survivor

Whenever I sit down to write, I am hyper aware of the sounds in my environment – a father’s whistle to a child nearby or the fizzing of my seltzer water as it sits on my desk. Living near JFK airport, I often type to the whirring sound of planes in the sky.

As soon as the weather gets a little warmer, the chirping and tweeting of the birds in the trees is electric. Sometimes I close my eyes with my pointer finger across my lips and hooked over my nose, the rest of my hand holding my chin up and just listen to nature’s orchestra.

I stopped to listen to the ensemble outside today and could not help but be reminded that my sister cannot hear any of these sounds. There is an entire world that she is deaf too.

_________

My sister was diagnosed at the end of my Spring semester freshman year of undergrad.

April 12th 2008 to be exact. She was 14 years old.

Her first day of treatment was May 5th 2008, two weeks before I came home for the summer.

She was receiving both chemotherapy and radiation, an aggressive attack on the nasal-pharyngeal carcinoma that threatened to spread into her brain and didn’t allow for surgical removal because of it’s tricky location.

I remember sitting in the hospital room with my parents after she would start a new round of chemotherapy. I recall the way the wrinkles furrowed on my mother’s forehead and deepened around my father’s frown. The nurses would set up the bag of poison as if it were regular IV fluids. We would sit – trying to joke and smile through the worry – and wait.

The effects were never immediate. They took time to set in.

It would usually take about twenty to thirty minutes before the overwhelming nausea and constant vomiting set in. After a few weeks, her body stopped taking food orally and she had to have a g-tube put in so that she wouldn’t disappear.

I remember praying and praying that the lethal chemicals trickling through the IV and coursing through her veins would kill the cancer before they killed her.

Because that’s what chemotherapy and radiation do really. They kill everything in sight – good and bad cells alike. There is no filtering process where the deadly chemicals halt cells and ask them to identify themselves before eliminating the enemy.

Maybe in a comic book version of fighting cancer, but not in real life.

The genocide in my sister’s body eventually killed the cancer and just barely missed her, instead rendering her nothing more than skin stretched over bones like tight, burned leather.

Months passed and her neck eventually regained its natural color. The radiation had burned it black like charred candle wicks. The g-tube was pulled out and the hole in her stomach healed, although she still hates the look of her second belly button. And the portacath left skin slightly raised and puffed on the left side of her upper chest.

I call them her battle wounds. I think they add to her beauty.

Her body is chock-full of reminders that she is a miracle, some easy to pinpoint and others invisible to the human eye. There is evidence all throughout her frame, inside and out, that without the invention of modern medicine she would have died.

I started to list the side effects she deals with on a daily basis until I realized that I could go on for pages. Her body is not the same – no survivor’s body is. They deal with the repercussions of modern medicine long past the time of remission.

There are three side effects I believe plague her more than any of the others. I will list them in no particular order:

    1. Her official diagnosis of hypothyroidism. The radiation treatment she received was aimed at her neck because the cancer had spread to her lymph nodes so her thyroid is permanently damaged. It no longer produces the hormones her body needs to regulate daily activity. She has to take a pill every day for the rest of her life in order for her body to perform the way that it’s supposed to.She has struggled with her weight because of the thyroid problem. While it may be a dream most people have – struggling to gain weight – it has been a very real obstacle for her.Six and a half years after her final treatment, we are proud to announce that she has finally settled into a healthy, average weight for her age, sex and height. This was an achievement that did not go without celebration in our Dominican family. Mami cooked her favorite food and I took her jean shopping.
    2. A heightened risk of infertility. The doctors warned her that there is a possibility she may not be able to have children. They did not quantify the probability, only warned her that she should attempt to start a family as young as possible. This is a lot of pressure for a 23 year old woman currently pursuing her Master’s degree in Music Therapy. She speaks about this less than any other of the lasting effects, but I think it bothers her most.
    3. Her high frequency hearing loss.  When she went back to high school after the treatment, she had an FM system – an assistive technology device that works like a miniature radio station. It hooks up a small microphone to the speaker (i.e. the teacher in the classroom) and amplifies the voice into her hearing aids. There was one time when she lost a hearing aid in high school. Our parents had to pay $1,000 to have it replaced. Besides the one time recovery fee, the devices she needed were mostly covered by insurance because she was still under the age of 18 and considered a child.

You cannot see these side effects when you look at my sister. She walks through life the same way she battled through cancer, with a smile on her face and the spirit of warrior.

___________

There is a Discover card commercial where a white man in his mid-twenties calls a customer service agent to gather more information about “frog protection.” He is shown with a cell phone in one hand and a pet frog in the other. The operator responds with enthusiasm as he details the fraud protection offered by the credit card company.

When the operator begins to describe protection against unauthorized purchases, the potential customer holding the pet frog seeks clarification:

“Just to be clear, you are saying frog protection, right?” asks the potential customer.

“Fraud protection” the operator confirms as if he heard correctly.

“Frog” replies the potential customer – to be certain.

“Fraud” responds the operator again.

“Fro-GGG” exaggerates the potential customer.

“Frau-DDD,” reiterates the operator, also exaggerating the final consonant.

“I think we’re on the same page.” says the man, smiling with his pet frog.

“We’re totally on the same page.” responds the operator.

This is a funny scenario to watch played out in a commercial; however, not so funny when it is an everyday interaction with someone you love who is suffering from hearing loss.

__________

I first heard the word ototoxicity sitting in an introductory audiology class that was required for my Communication Disorders degree.

Vestibular.org defines ototoxicity as:

…Quite simply, ear poisoning (oto = ear, toxicity = poisoning), which results from exposure to drugs or chemicals that damage the inner ear or the vestibulo-cochlear nerve.

The class went on to discuss different types of hearing loss and how hearing loss affects a person’s quality of life.

I had never really thought about what my sister was missing until it was presented to me in a textbook manner.

I reminisced about the time I wore a belly dancing coin sash skirt in the house, the one with all the beads that jingle and jangle as you move. My sister smiled at me and simply stated, “I can’t hear that.”

In disbelief, I danced about her and she continued to shake her head. I took the skirt off and shook it with rigor next to her ears and she insisted, “I can’t hear it sis.”

There was never any resentment in her voice. She just stated the facts and continued with her routine for the night. Routines that often included some kind of creative project. From drawing, to singing, to playing more instruments than some people can name – she has always been the artsy type.

I also had flashbacks of my responses to my sister when she asked me to repeat myself. How irritation tended to drip from each word.

There were countless of times when I would forget that by having my back turned to my sister, she could not use her superior lip reading skills to supplement the sounds she was missing.

How many times had I repeated my message with clear agitation etched onto my face and resonating in my voice? How could I have been so unkind?

And yet she never reminded me, or any of us, of all the sounds she couldn’t hear. She never wanted to inconvenience anyone. And it’s easy to forget about the disability someone is living with when you can’t see it on the outside.

Her hearing aids broke in her sophomore year of college and when she was originally quoted $7,500 to replace them by a private audiologist, she insisted that she did not need them and went on to make Dean’s list every semester that followed.

Perhaps you thought I was joking when I said my sister has the spirit of a warrior.

I was not.

_________

A person with high frequency hearing loss has difficulty hearing sounds in the 2,000-8,000hz range. This includes consonants, s, h or f. It includes whistling, birds singing, doorbells, helicopters and motorcycles. A person with high frequency hearing loss may hear most speech as muffled and have more difficulty understanding female voices over male voices.

You would never know about my sister’s high frequency hearing loss were it not for her sharing it with you. Her hearing specialist in high school, Jane Healy, provided her with really useful strategies to compensate for her lack of hearing in certain ranges.

I’ve also noticed that my sister often just doesn’t even try to listen in certain situations (i.e. when we are driving in the car and there is music playing.) She will go about her own business until someone specifically calls her name multiple times or pokes her to gain her attention.

Recently, my sister was interviewed by a philanthropist putting together a collection of essays and interviews on childhood cancer survivors. Brian Braff urged my sister to get a hearing aid evaluation.

It’s been so many years since she had hearing aids, that she was not even sure what she needed when she was asked. If they knew what she needed, Brian insisted, then maybe they could help provide her the funds for the hearing aids she is in such desperate need of.

We went to the Adelphi University Speech and Hearing Clinic, upon the referral of an old friend. Via e-mail, my audiologist friend helped us make an appointment with the not for profit clinic and reiterated the urgency of the evaluation.

She wrote, “Yes your sister definitely needs to get fitted with hearing aids if she has a hearing loss – if she’s not stimulating her hearing she will continue to lose it and the older she gets the harder it will get.” You know – the good old, use it or lose it philosophy.

This is not an essay about private health insurance. Although I do urge you to read more about how insurance companies rationalize not paying for hearing aids for adults (anyone over the age of eighteen) because they are elective.

No – this is an essay about my sister’s resilience and her quality of life.

We cannot remove the scars from her body or operate her thyroid into functioning again. I cannot promise her that she will be able to bear children without any outside aid or reinforcement.

What I can do, what we can do collectively, is to raise money to help make just one of her many side effects more bearable as she finishes her degree in Music Therapy, kick starts her career working with childhood cancer patients and starts her own family.

I know she would never ask for the help on her own. She has resolved to the insurance companies’ definition of her hearing as “elective.” She does not want to be a hassle or a burden.

She deserves better than that.

So I’m here to advocate for her. Because that’s what big sisters do. Because she’s going into a career where she constantly jokes about knowing she will make no money, and she’s doing it anyway. Because she is made up of love, empathy and warrior spirit. Because she has made it this far without the hearing aids and I can only imagine what she would be capable of if she could truly and fully hear the world that she is surrounded by.

From lecture rooms to spring mornings outside the window – what kind of magic could she create for the people she wants to help if everything didn’t always sound like she was underwater?

We hope to find out.

996_523949519240_7957_n

https://www.gofundme.com/herlifeasasurvivor

***This is essay 13 in the #52essays2017 challenge created by Vanessa Mártir.

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