What my disability developed later in life taught me

A little over seven years ago I went to an early evening Mass in the chapel upstairs that serves the 20 or so Jesuits who live above the offices of America Media here in Manhattan. By Communion time, I felt a strange sensation in my left ear, like when you get water lodged in your ear after a swim. By the end of Mass, the sensation had become a loud, painful, pinging sound. By the end of dinner, I had lost all my hearing in that ear.

I called the doctor first thing in the morning, but it was already too late. Since I already had reduced hearing in my right ear, in the course of those two or three hours I went from having 90 percent of the hearing I was born with to having less than half of it. I never recovered the hearing I lost that night and have suffered from a maddening tinnitus ever since, which sounds something like a drill driving through tile. The doctors call what happened to me idiopathic sudden sensorineural hearing loss, which is a fancy way of saying that I went deaf abruptly and no one really knows why. They still don’t. It happens to so few people that there’s very little research about it and no effective treatment.

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I had been sick before, of course. As a child, I was often hospitalized or in bed with painful back and leg problems, the result of a birth defect that modern medicine was able to correct. But I had never experienced a health event on such a scale as an adult, and it has taken every day of the last seven years to learn how to live with my disability. I’m still learning; I’m still figuring out where to sit or stand at any given moment in order to increase my chances of hearing something. Depending on the shape of the room or the ceiling, or whether the floor is tiled or carpeted, I either hear some of what is being said or almost none of it. At first I was embarrassed and tried to fake my way through. Now, I find it’s easier for both my company and me if I just tell people that, in fact, I have a disability.

I know that many people have far more challenging disabilities than mine. Still, it has not been easy. I’ve learned, for example, that while people are often sympathetic toward those who are visually impaired, they can be quite impatient and even rude with people who are hearing impaired. People resent having to repeat something because I didn’t hear it, or they get frustrated because I didn’t hear the punchline of their joke and now their timing is ruined. Sometimes they just say “forget about it.” If I may, a piece of unsolicited advice: “Forget about it” is just about the most offensive thing you can say to someone with a hearing loss. If it was important enough to say in the first place, then say it again. It’s not our fault that we didn’t hear you.

For the most part, however, people are understanding and compassionate. In that sense, I’m grateful for my disability. The experience reminds me that I have many people in my life who love me and care about me. I’m also grateful because my disability has made me a better man. I used to be one of those people who might say, “Forget about it.” Now, in some modest way, I’m more in touch with the world’s pain, with the countless challenges, seen and unseen, that so many people encounter every day. It also prompted me to help tell their stories, as we do in this issue. When we listen to the stories of people living with disabilities, we all benefit. As one priest told the reporter of this week’s cover story: “Those who are disabled, brothers and sisters so often excluded and ignored, are the source of God’s grace. They are our closest encounter with Jesus.”

My modest hope is that this issue of America, as well as the complementary video and archival content on our website, will prompt a new conversation about the place of people with disabilities in the life of the church. My fervent prayer for us all is the one I have uttered daily since that turning point in my life seven years ago: Ephphatha! Be opened! 

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William Rydberg
1 year 9 months ago
Thanks for sharing, you are in my prayers... in Christ,
Lisa Weber
1 year 9 months ago
When you have a disability or one of your loved ones is disabled, you quickly see the best and the worst of the human race. For every impatient or unkind person, there is at least one more who is stunningly kind. Thank you for writing this. May God hold you in the palm of his hand.
lurline jennings
1 year 9 months ago
Know that you are beloved by many and you are in our prayers. We will pray for recovery and new findings from research in the problem you have which is shared by many. Otorhinolaryngology is finding more each day on the cure for those multiple diseases that attack that special anatomy. May you and others who suffer find a miracle. God bless you, and all those with whom you work. You are all very special to us.
Bruce Snowden
1 year 9 months ago
Thanks, Father Malone, for sharing with me, with all, your grave hearing disability. No matter how insignificant, however dreadful the disability, the “limp,” no one likes to talk about it, even think about it! Scripture says, “The humble man shall speak of victories,” and I believe one of the “victories” of which you can boast, related as it is to the Cross of Jesus which you share and about which Paul says boasting is O.K., is the fact that the “ears” of your heart and mind and soul have been opened,”Ephphatha, be opened!” Your daily prayer answered in an unexpected way. You now understand! In God’s own way and in God’s own time, let physical healing follow! I too am in the midst of attending to a hearing problem involving deafness and audio noises and am well acquainted with the well-meaning but hurtful shut-down remark, “Forget about it!” At 85, along with other bodily disabilities of old age, hearing loss is no surprise, yet very unpleasant. But the whole “bundle” I’ve learned to “offer it up” as the good Sisters used to say, giving the burdens salvific value, also giving a lot of understanding to human pain. It’s one thing to be disabled by old age, but something entirely other for a young person like yourself to become disabled – that word, frightens, so much harder to put up with. Know Father, you inspire me. Thanks!
Anne Chapman
1 year 9 months ago
Thank you for writing this, Fr. Malone. I am among many, like you, who have hearing loss. You, however, were still quite young when your experienced a dramatic loss of hearing. With hindsight, I realize that I was losing hearing gradually while in my 50s. It did not become a problem until I was 61, and it has continued to get worse, seriously impacting my daily life. I attend a church that provides assistive hearing devices. I had never thought I would miss hearing and understanding homilies, but it turns out I did! I mentioned this to our priest one day, and he told me that the parish had devices to help. I hadn't known. The video you link to clearly highlights the need for churches to be aware of the needs of a wide range of disabled parishoners. Hearing loss is not visible, so is often overlooked. If parishes do not provide assistive listening devices, they should. It is a relatively easier accomodation than many that are needed. With the aging of the baby boom generation, the need for these devices will continue to grow. Few people understand the impact of hearing loss until experiencing it themselves. I was under the delusion shared by many that hearing aids would provide "normal" hearing just as glasses usually provide normal visual acuity. Sadly, this is not the case, in spite of the cost of hearing aids (ranging from $3000-$6000/pair and not usually covered by insurance. Medicare also does not cover hearing aids). Like Fr. Malone, I have experienced impatience and rudeness. I often tell people I must speak with on the phone or even in person that I have a hearing loss and to please understand if I ask them to repeat something. My hearing loss eventually forced me to stop working. I was "retirement age", but I enjoyed my work and miss it. The isolation that comes from hearing loss has been very difficult for me, perhaps one reason I began engaging in cyber-discussions. I miss too much of what is said in group discussions - bible studies, book discussions, etc and cyber-discussions help make up for the loss. One hearing blog I discovered recently has some useful information to help hearing people understand hearing loss. https://livingwithhearingloss.com/2016/01/19/five-things-i-wish-everyone-knew-about-hearing-loss/ Another writer, Katherine Bouton, is a journalist who experienced a sudden hearing loss while young, like Fr. Malone. Eventually, after her hearing worsened and losing her job, she researched and wrote a book called Shouting Won't Help - Why I--and 50 Million Other Americans--Can't Hear YouOne reader review of the book highlights the difficulties Fr. Malone touches on"... my mother is struggling with hearing loss. She had shared her frustration, anger and depression with her isolation. This book is able to greatly enlarge my understanding of her struggle. ....Most striking for me is the sheer exhaustion of effort that is required for a person to cope with conversation even with good hearing aids."Hearing aids amplify but don't provide word clarity - the main reason that "shouting won't help". The parish featured in the video has a long history of initiating exceptional service projects for the entire community, not just the parish. In addition to starting PCR, the parish started a free health clinic for the working poor - those who earn too much to qualify for Medicaid but too little to afford health insurance, working in jobs where the insurance is not provided by employers. Those interested in starting a program like PCR or the Mercy Health Clinic can learn more from the following links. http://pcr-inc.org/ http://mercyhealthclinic.org/
Bruce Snowden
1 year 9 months ago
Maybe I should have made this a part of my earlier post dealing with Father Malone’s disability, but I refrained from doing so as it had little to do directly with Father’s disability. However, because it does address an assault on the dignity of the disabled particularly in Nursing Homes, and Hospitals, I decided to submit it as a second posting. Diapers are meant for infants and toddlers, not for adults. However, in Nursing Homes and Hospitals where disabled people reside, the custom of referring to as “diapers” the wraparounds or other types of undergarments used by them is common. How degrading to the handicapped adult to find themselves referred to as “diapered” like an infant or toddler! It was very upsetting for me to hear my Mom in the last days of her life in a hospital, referred to as “diapered,” a woman of 87 who in her days had put on and changed innumerable times diapers on the six of us as infants and toddlers. All of us may one day find ourselves “diapered” the self-esteem of the disabled assaulted and wounded! Yours and mine. So, let’s get ready for it, or maybe not. Get ready for it unless someone takes this “ball” in hand and runs successfully, convincing Administrations at least in all Catholic Nursing Homes and Hospitals, to permanently delete from use the word “diaper” referring to the adult undergarment the disabled in their care use. Give it a name, but don’t call it “diaper!” Do the following words of Jesus apply? “Do unto others as you would have them do unto you!” Is there anyone willing to move this forward? Please God, YES!
Monica Doyle
1 year 9 months ago
This is in response to one of the above comments. Is ' Incontinent Briefs ' a less demeaning term?
Bruce Snowden
1 year 9 months ago
Monica, In my opinion "incontinent briefs" is hardly better than "diapers." Maybe something like "adult undergarment" sounds inoffensive. Thanks for showing interest!
Bruce Snowden
1 year 9 months ago
Monica, I feel a need to make sure my response to your suggestion didn't come across to you especially, as starched and indifferent, so I hope this addendum helps. I do appreciate the interest you have shown and hope that the little spark will catch fire so to speak, allowing others to step forward with ideas and suggestions, which trustingly may lead to the desired action by someone entrusted with the "ministry of change" like an Ordinary, who will pastorally institute the desired practice in hospitals and nursing homes. as jurisdiction allows. Again Monica, Thanks!
Fernando Diaz del Castillo Z.
1 year 9 months ago
Thank you Father Malone for sharing with us what it means to go through a hearing disability. We may be rude without being aware of it, and we should be ready to the day a hearing disability will reach us. I promise I will be more careful with some people I am close to and suffer of hearing impairment. A suggestion: please, besides the title "Of many things" it would be helpful to add a subtitle that guides about the theme of the article. Thanks.
HERBERT ELY MR/MRS
1 year 9 months ago
Hearing loss is the invisible disability. Most people will make accommodations for the physically disabled - because the can see that a person is disabled. The person who has even a mild or moderate hearing loss must constantly make a choice: "when someone is speaking to me and I don't understand, should I speak out or not? Am I being fair in telling someone that I did not understand or should I just let it go?" There are medical dangers: dementia, loss of balance, and emotional tension. There are spiritual dangers involved. Resentments can boil at people who do not speak clearly, preachers who don't use microphones. Missing important details about living or financial arrangements can lead to anxiety and fear. Misunderstandings and negative attitudes affect family life. Parish health ministries should include education and basic hearing tests. Most of all, hearing impaired people need to learn to advocate for themselves.
Michael Barberi
1 year 9 months ago
There are many disabilities and illnesses that are idiopathic. Many illnesses and disabilities are hidden such as epilepsy or seizure disorders, chronic pain, memory loss, learning disorders, to name a few. I agree with Fr. Malone that when it comes to our neighbor, especially those with illnesses and disabilities, we all need to practice patience, kindness, compassion, mercy and charity. As for a real crisis in my life, I am recovering from severe spinal surgery that will take 9-12 months of physical therapy before I can regain any sense of normalcy again. I can attest that there are many people who are kind and merciful. My weekly Eucharistic minister, a woman in her 80s, is such a person who brings me the good news each week as well as joy and laughter. Truly, I can say to all of you that in her presence, I have experienced the love of God.

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