Hearing Aids for Chiquita

My sister was diagnosed with nasal-pharyngeal carcinoma at the end of my Spring semester freshman year of undergrad.

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

I remember sitting in the hospital room with my parents after she would get a new batch 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.

I can write a book about the effects that my sister has had to deal with in the face of surviving childhood cancer. I wrote and published an essay titled "Her Life as a Survivor" that you can read on my personal blog (www.niaita.net) I urge you to read it. And to read about what a beautiful spirit she is in the essay titled "I Call her Chiquita."

She is currently pursuing her degree to become a music therapist, a career she discovered when she was laying in the children's cancer ward of Montefiore hospital and Charlotte came in with a guitar.

The very same drugs that saved my sister’s life also damaged many important components of her body -  one of them being her ability to hear within normal ranges.

Sadly, private health insurance does not cover hearing aids for adults. Apparently, after the age of eighteen, hearing in certain ranges is considered "elective." So even though my sister is still in school, attending classes, lectures and internships, she does not qualify for any financial aid to replace her broken hearing aids. And she has gone without them for the past three years.

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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 raise the funds for the hearing aids she is in such desperate need of.

The last time we got a quote from a private audiologist for hearing aids they quoted us $7,500 for the pair. This time around a dear audiologist friend helped us make an appointment at a not for profit clinic where we were quoted $4,000 for two hearing aids. A special shout out to the Adelphi Speech and Hearing clinic for the beautiful work that they do.

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.