Will I Be Deaf?

I’d like to apologize for my sparse posting lately.  I have so many ideas—if only Word Press could read my mind and automatically upload those thoughts?  So many things happened these past few months: I got laid off.  Someone passed away.  Started coaching high school debate.  I fell down at TJ Maxx—the fall could have happened even if I didn’t have Myasthenia Gravis (MG) but it’s getting up (both literally and figuratively) that has been hard.   And the biggest thing that happened was months of problems with my nose and ears.  I have asked myself: What will life be like if I become deaf?   

How It All Started

Around April I noticed my nose was congested.  Eventually I had a tear in it that only I could see.  And I started to hear everything.  I mean everything.  I would walk through the mall and I could hear every side conversation and every baby crying.

Loud! Too Loud
Loud! Too Loud

One minute things were normal.  Then all of the sudden things would get twenty times louder.  The TV would be too loud.  I could be having a normal conversation and then suddenly my voice and the other person’s voice would be like megaphones.  Every time I drank water, I could feel fluid in my ears.

Moment of Truth

I saw an ENT (ears, nose, and throat) doctor in August.  I went through a few hours of tests.  I was nervous.  I have five illnesses.  So most bad news in my life has been delivered to me in a waiting room after taking tests.  As my friend Adam jokes, I am a bad test taker.  I could live with heightened hearing.  Sure it would be annoying but nobody ever died from hearing too much (I think).  I would be like Ray Charles minus the talent.  But I couldn’t live with the thought of being deaf on top of everything else.  I remember an experience at Mayo Clinic in 2008 when I met a nurse with an autoimmune condition who lost her hearing in a matter of two days.  Two days!  At the ENT clinic, there were deaf patients around me.

During the last test that day, the technician told me to sit in this dark booth with two headsets wrapped around my head.  She handed me a clicker.  Every time I heard a noise, I was supposed to press a button.  At first, it was easy.  But over time the noises got fainter.  Then came the final exam.  The technician told me to repeat every word she said.  The first words were, “Clown.  Rainbow.  Cowboy.  Ice Cream.”  After a few minutes, I could no longer repeat her words.  I could hear sounds but not actual words.  Frustrated, I wanted to blurt out random words like, “Trix.  Rabbit!  Magic!  Easter.”  But I didn’t.  I sat there in silence in the dark knowing I failed. Quick! I thought:  How many friends can I talk to before completely losing my hearing?  Can I memorize the sound of my nephews’ voices?  And what about New Kids—no more NKOTB concerts!

The Prognosis

I waited thirty minutes to hear the results.  Then the doctor said, “Jessica, it appears your hearing problems are caused by allergies in your nose.  Your eustacian tube, which connects your ears and nose, has been damaged…But it’s temporary.  You are not going to be deaf.” Immediately, a tremendous weight was lifted.  He prescribed medication, which I have been taking for months.  I went home that day and cried for three hours.  I was overcome with relief—grateful not to lose anything else.

Your Thoughts

Slowly my nose and ears have been improving.  Being chronically ill (whether it’s lupus, fibromyalgia, Sjogren’s, or cancer) it often feels like things can’t possibly get worse.  But most of us have something—a sense or ability—that we still have in spite of all we’ve lost.  Yesterday at a wedding I was able to dance to a few numbers.  Before I got MG, I would have danced all night.  Sure I was tired last night but I was grateful that I was able to dance a little with friends and family—especially my charismatic five-year old nephew Mikko.  What is one thing you can be grateful for today?

–Your Stylist, Jessica Gimeno

JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

One thought on “Will I Be Deaf?

  • August 1, 2014 at 11:09 pm
    Permalink

    With my condition I have hearing loss, and over the years it has gotten worse. I know one day I will be diagnosed as deaf and not just hard-of-hearing. That’s hard to know, but easier because of the friends I have met through my knowing ASL and accepting the fact that I’m losing my hearing. I wear hearing aids to help, but they only help so much. So despite losing my hearing, I’m grateful to the people I have met because of it. It poses its challenges, but it opened up a new language to me, one I actually enjoy using more than English!

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *