Category: The Impact of Hearing Loss

I think it’s basically impossible for a person with normal hearing to understand what it’s like to have a hearing loss. The only way to have a good idea is to know someone with a hearing loss – but still, this can’t replace firsthand experience.

Recently, I was talking to a friend who is having a difficult time adjusting to a cochlear implant. Although he is an adept lipreader, watching him struggle to follow the most basic conversation, and the amount of energy it zapped from him, was heartbreaking to see. And it occurred to me, maybe the best way to describe it is: hearing is freedom.

When you can hear, you can have a conversation with anyone you want (well, provided you speak the same language). You can conduct business, exchange transactions, get your needs met. You can ask any question and understand the answer.

You wake up and live in a world that is set up for your level of hearing – I can’t tell you how mind-blowing this concept is, because I’ve never really had that. To wake up and just be, without struggle or worry about how your hearing will cause problems during the day, seems so incredibly liberating to me.

You can assume that what you hear is the same as what other people hear, and thus, if something doesn’t make sense, you don’t need to feel embarrassed about asking for clarification.

Some of the biggest bonding experiences in life – like getting together with loved ones and dipping in and out of simultaneous conversations – are effortless for you.

You can travel and understand all the announcements on the P.A. system (or if you can’t, nobody else did either). It’s easy to travel by yourself.

You have no stress about whether or not you’ll be able to hear in crucial times, such as during a job interview or at a doctor’s appointment.

I could go on and on, but essentially it boils down to the same essence: hearing is freedom. People who hear normally don’t realize this, because they don’t know any different. But it a huge, liberating gift to have each and every day.

Imagine that there is a disability that affects 48 million Americans (1): the third-most common chronic health condition in the U.S., more prevalent than diabetes or cancer (2).

Imagine that the condition had a massive economic impact as well: estimates of the economic cost of lost productivity varied from $1.8 to $194 billion, and direct medical costs ranged from $3.3 to $12.8 billion. (3)

And yet, imagine that the condition is constantly downplayed, both by medical research and society in general. The National Institutes of Health (NIH), which is the largest public funder of health research, doesn’t even list the condition as one it funds — despite that it causes great disease burden, ranking 10th in the US among all conditions as a contributor to Disability Adjusted Life Years (a widely-used measure of disease burden), according to the World Health Organization (WHO). (4)

How could this lack of funding for better understanding and treatments be possible when the country is losing billions of dollars in productivity to it?

Imaging that even a mild form of the condition — which many people incorrectly saw as an inevitable part of aging — could cause a child to miss as much of 50% of a classroom discussion. (1) For those with more severe forms of the condition, the outcomes could be much worse.

Despite this, imagine that the cost of treating the condition was mostly covered by the individual in the U.S., not by insurance, (5) only further emphasizing the attitude that it was just the individual’s problem to deal with — despite all the obvious evidence to the contrary.

This condition is real, and it’s hearing loss.

Sources:

1. Hearing Loss Association of America, “Hearing Loss Facts and Statistics.” https://www.hearingloss.org/wp-content/uploads/HLAA_HearingLoss_Facts_Statistics.pdf?pdf=FactStats
2. Centers for Disease Control and Prevention, “Hearing Impairment Among Noise-Exposed Workers — United States, 2003–2012.” https://www.cdc.gov/mmwr/volumes/65/wr/mm6515a2.htm
3. JAMA Otolayngology-Head & Neck Surgery, “The Economic Impact of Adult Hearing Loss
   A Systematic Review.” https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/2647954
4. New York University, “NYU Researcher: National Institutes of Health’s Lack of Reporting on Hearing Loss Research Spending Runs Counter to Its Stated Goals.” https://www.hearingreview.com/inside-hearing/research/nyu-researcher-publishes-commentary-nihs-hearing-loss-research-funding
5. The Lancet. “Hearing loss: an important global health concern.” https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)30777-2/fulltext

For many people, the most pivotal, life-changing factors in their existence happens suddenly: meeting their partner, being inspired to start or change careers, or losing a loved one unexpectedly.

But in my case, the factor that altered the course of my life more than anything occurred over a short period of time, when I was too young to understand what was happening – much less do anything about it.

Around the age of 4 I lost some of my hearing. It happened for no detectable reason whatsoever, besides the mystery of genetics. For all the years since I’ve fielded the same questions from doctors, audiologists, and regular folks trying to convince themselves that there must have been some cause: Where you sick? (No.) Did you have to take some kind of medication? (No.) Were you exposed to a loud noise? (No.)

I think this frightens people, the idea that something so vital could just disappear permanently, through no external cause or fault of their own. They usually look uncomfortable and then change the subject. Or they say, “Well, you seem normal.”

There is a certain ease that people who have never had their body fail them possess. They aren’t aware of it, but I see it.

Even though everyone has problems to deal with, if you wake up in the morning knowing you can rely on your body to do exactly what you need, and that the world is set up for you to function well in it, you have a sense of security and intrinsic trust that life will be okay. Even if you don’t think life will be okay for other reasons – you have emotional scars, financial problems, relationship issues – you don’t doubt your body’s ability to perform in everyday situations.

I also see a commonality between people whose bodies have not won the genetic lottery, be it through hearing loss, surviving trauma, or other physical ailments: Some part of us is always waiting for the other shoe to drop. When will more be taken from us?

At this point in medicine, hearing loss is permanent and usually progressive. That isn’t exactly an uplifting reality.

For years, I had the unconscious and conscious idea that I was broken. It was a message I’d internalized from years of hearing tests that showed I had a hearing loss (at first, mild-to-moderate; now it’s moderate-to-severe), to being one of only two people wearing clunky hearing aids at a school of hundreds, to hearing rude and ignorant comments about my hearing (which I also knew meant there were probably plenty of snide comments I wasn’t overhearing).

Today, I look at hearing loss not as a personal flaw I have to hide but more as a hindrance that I accept as part of my life. I know that doesn’t sound like much, but to go from feeling desperately afraid that anyone would ridicule me for missing what was said to being unbothered (okay, 90% unbothered) when people do so is a big, positive change, I’d say.