Monday, October 19, 2009

Strength in Weakness

It never fails that people smash your face in the mud when you are at your weakest moment. Sometimes, it's the people that you care about the most who do this and they do it the best because they aim straight for those areas where they think they can destroy. And sometimes they do. Sometimes for a brief moment they leave you naked blowing in the chilled air. When you have been so down at certain times in your life that you truly feel you will never get back up...and do- you learn the meaning of strength.

I went to Pisa today and spoke to the mom of a deaf child who had received a cochlear implant a week ago. She and her husband were waiting to be discharged. I sat and watched as the father whistled and yelled to get his child's attention. The child could not hear yet the father insisted.

The mom told me her story...He was her third child and at nine months, six days of pregnancy she called her gynecologist to be admitted urgently to the hospital, she felt like something was wrong. He told her to go home and wait. She did. Eight hours later, something was wrong and they called 911. The placenta detached and her baby remained without oxygen for two and a half hours. She sat in agony in the brand new hospital on a bed in the hall for fifteen minutes because the EMTs couldn't find the elevator. Her baby is a living miracle. Despite all of this, he is okay...just deaf.

Her husband is in denial and insists that he hears, even after having gone through the ci surgery. The mother has gone to every doctor visit herself, informed herself and fought for her child's needs...herself. I hugged her and she let it all loose. While she is weak and lost, she is strong for her child...and her husband in denial.

Twenty minutes later I met an adult with progressive hearing loss. I actually met him through an Italian Forum and when he asked me for information about Pisa, I told him I'd meet him there to answer any questions he may have. He was there with his wife- THE MOST ADORABLE COUPLE! We've had some discussions here about deaf and hearing couples, they were so in sync with each other and she kept saying, "I just want him to be happy."

I sat there through an audiological exam of speech comprehension aided and unaided. Such an intelligent, brilliant man. Watching him perform the testing with and without his hearing aids gave me a clear idea of how his hearing loss affected him psychologically. We sat and talked after the exam, and he told his wife how people think that Deaf people are stupid. She disagreed. He explained that while he was walking in the hall, his boss said something to him in passing that he wasn't able to understand. He asked his boss to repeat what he had said and his boss replied, "Is it possible that it's so hard for you to understand anything?" This man responded, "I need you to repeat what you said because I am deaf, not because I am incapable of understanding."

He goes through this difficulty every day of his life. People around him try to render his hearing loss a weakness, but he is a strong enough individual to explain it and educate those around him.

The cochlear implant will change this man's life and he is a candidate. He will gain that extra amount of hearing that will enable him to talk on the phone with confidence. I told him I will be present at the first speech comprehension exam he takes with his newly activated cochlear implant just to see the look on his face after eleven years of adapting to this new condition, eleven years of battling ignorance.

We all fight battles on a daily basis and we all have moments of weakness. Never underestimate the capacity of the human spirit to turn that weakness into an immeasurable display of strength.

One more thing...add another Italian region (Puglia) that will now be performing the Newborn Hearing Screening. Yes, we're playing dominoes here in Italy.

Photo c/o


Anonymous said...

I hope you didn't tell him that he will be able to talk on the phone after he gets a CI. It's a possibility, but not a certainty. It's one of the things that upsets people in the Deaf community the most -- when they are given unrealistic expectations about CIs. Not everyone is a superstar. I hope this guy will be, but there are no guarantees, and you set someone up for a HUGE let down by telling them things like "soon you'll be able to talk on the phone!"

Kat said...

I have read your blog anonymously for the past several months. May I humbly say that I am amazed by the work that you are doing. You are helping to bring about change and you should be commended for your work.

I don't agree with the person that previously posted on your blog. I don't believe that you are setting up false hope, just hope. If a person is willing to do the work of learning how to use a CI then, anything is almost any given age.

Keep on doing what you're doing and people will be impacted in a positive manner.

kim said...

The story about the older man with progressive hearing loss broke my heart. I am that man. I walk in his shoes every day.

This is why people with hearing loss have a high suicide rate, drinking and drug problems. A doctor once many deaf people struggle with depression because they feel numb or 'dead' when they can no longer hear their heart beat or hear their own breath. Add to that the many, many rude comments due to the invisible disability, and it gets so depressing. People just don't get how a person who speaks normally can be deafer than a door knob. They say things to us no one would ever say to someone with a white cane, but we're equally impaired.

I recently read that the deaf struggle with their weight as well depression and drug/alcohol abuse. (not sure if they studied mostly late-deafened, born deaf or both), but I know eating is my drug of choice. It's pretty benign, and provides lots of sensory stimulation in the absence of sound.

Progressive hearing loss isn't for wimps-- but it's not the worse thing in the world either-- especially when surrounded by all this wonderful technology! Thanks for your post and all the great work you do for deaf children. People like you make a difference. Hugs.

Unknown said...

Dear Anon,
My speech and how I talk to the people I meet is not the same for everyone. First, I make it clear to them that I am NOT a doctor, I am a parent advocate. I have been interacting with deaf individuals and their families for only two and a half years, yet I have listened and learned. I had before me a man who lost his hearing 11 years ago, who is a decent hearing aid user also because his brain is capable of elaborating the sounds he has amplified. He is the perfect cochlear implant candidate and yes, he will hear on the telephone. If my son, born deaf only having heard from hearing aids his entire life is able to hear on the telephone, this man will be able to hear on the phone.
Michele was another candidate who I was sure would be able to hear on the phone because he is very similar to Jordan. It's a combination of years and years of speech therapy, the ability to maximize hearing aid use and brain power focused on maximizing that limited amount of sound that arrives.
Other two people I've met, I did not say that to, because I wasn't sure they would reach that possibility.
I am 100% certain that this man, will find the ci a life-changing experience.
What I'm trying to say is that each case is different. I very well know that from children to adults certain gains from the ci vary, but there are reasons for this based on each individual. I am generally a very cautious person, also because I don't want the person to come back to me and say, "You said this to me...and it wasn't true." But, when you see a man who no longer has any gain from his aids suffer and realize that he just needs that extra assurance to help him find the confidence to improve his life, because that possibility exists- while a doctor cannot do this, I can. And I don't always do it, but in this case- I did..because I believe it to be truth.

This guy was Josh Swiller, but born hearing- no brainer.

Kat- Thank you...I do not believe in giving people false hope so that they have unreasonable expectations. I don't know what experiences everyone has had in receiving ci information, but it always depends on the case history of the individual. Thanks for following the blog and for your really nice words- greatly appreciated:)

I thought of you every single second I was with this man. For me, he was you.

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