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Silenced

Editor’s Note: This piece was awarded an honorable mention in the Pulse writing contest, “On Being Different.”

As a maternal/fetal medicine specialist for twenty-four years, I’d always felt that speaking to my patients, peers and the hospital staff was one of my God-given talents. I’m very good at giving bad news to expectant parents about their fetal diagnosis—or I used to be.

All of that changed six years ago, when I had a thyroidectomy for thyroid cancer. During the surgery, both of my recurrent laryngeal nerves were paralyzed, and so both of my vocal cords are paralyzed.

As a result, I have lost the ability to control my vocal inflections. For instance, I’m unable to raise my voice at the end of a question—the audible clue to the listener that a question is being asked. This inflection is used unthinkingly, day in and day out, by everyone—except for me. I can no longer tease or kid or be sarcastic with my family and friends, because it comes off sounding mean. My voice, having lost its cadences, is unpleasant to hear; and now, when giving perinatal counseling to my patients, I have no way to convey the empathy and emotion I feel for them—something that I used to do effortlessly.

To use a medical metaphor, I feel as if I’d gone in for reconstructive surgery on my knee, but woke up with an above-the-knee amputation. It was that traumatic: I felt, and still feel, that my voice was surgically cut out of me.

After my surgery, a tracheostomy was performed; a hole was created in my windpipe, and a breathing tube inserted in the hole. Returning to work after the tube was removed, I was very breathless, and my voice was quiet, hoarse and coarse. (It still is.) My paralyzed vocal cords obstruct my airway, leading to shortness of breath. I have to walk slower than I used to; I must also wear a microphone headset with a portable speaker, so that I don’t strain my vocal cords.

At first glance, I appear normal to my patients, but when I introduce myself and start counseling them, I see them trying to figure out what is wrong with me. Patients who don’t know me frequently comment on my voice or inquire about my speaker and microphone.

“Are you talking on the phone?” they ask—or, even worse, “Are you recording our conversation?”

They express concern that I may be sick, and possibly contagious. I assure them that they cannot “catch what I have.”

Some of my fellow physicians joke about my microphone, asking, “Can I get fries with that?” It’s hurtful to feel that my disability is being belittled and ridiculed, but at this point, I don’t waste my time (or voice) explaining my medical condition.

“You don’t need that headset; I can hear you fine,” some colleagues have assured me, unaware of the effort it costs me to talk.

Since my headset was prescribed by my laryngologist, I can’t help but wonder: Would these colleagues go up to someone who uses a cane or crutches and say, “You really don’t need that”? 

I’ve become keenly aware of the power that the human voice wields in our society, as reflected in many catchphrases: “Use your words”….”Speak up”….”I just want to be heard”….”Speak your mind”….”She found her voice”.…”I have something to say”….”Listen to me!”

Until my voice was taken from me, I felt confident that my patients would come away from our sessions with a full understanding of their unborn baby’s birth defect, and of the plan of care for the pregnancy, delivery and newborn baby. Now, however, I’m concerned that my vocal difficulties may lead them to misinterpret something—even when I ask, as I always do, if they understand everything.

Patients expect their physician to be competent and caring; an entirely appropriate expectation. While counseling patients, I wonder how much they may be doubting my competency. When our session is complete, I often wonder how the patient perceived me. Did she think I was caring and empathic? Did she feel that I’m competent, and does she trust me and my knowledge? Did she understand my counseling, or did my voice get in the way? The physician/patient relationship is not a balanced one: Was she afraid of asking me to repeat myself?

I also find it difficult to talk on the phone with medical professionals who don’t know me. My voice no longer conveys confidence, knowledge or authority, and when I inform a colleague of abnormal test results or give a nurse or sonographer directions or medical orders, the response is sometimes disbelief. I feel as if I’m not being taken seriously. Though I’m not mute, the outdated, offensive phrase “deaf and dumb” comes to mind and pierces like a sword. In our society, if you can’t speak fluently, people think you’re not bright.

I used to be a fast talker and dynamic lecturer to our ob/gyn residents, nurses and sonographers. Nowadays, when I’m providing a lengthy, detailed explanation or teaching moment, I can see colleagues or staff thinking: Will she just spit it out? I don’t have the time or patience for this.

“I know what you’re getting at,” someone will say, cutting me off.

JUST LET ME FINISH! I think.

Before my injury, I was the “golden” physician at my hospital system. I did radio, billboard and TV ads for the hospital, videos for the hospital website, TV interviews and research presentations. I served on the hospital board, did fundraising and taught our medical staff, our ob/gyn residents and the hospital and imaging staff.

After my disability, I was golden no more—set aside by the hospital administration. Who wants to listen to someone whose voice is unpleasant and difficult to hear, and who, when she speaks, sounds as if she’s had a stroke? Who has the time to really listen to what I have to say?

In the years before my surgery, I had established myself as an excellent healthcare provider for high-risk pregnancies. I had a great reputation that I’d worked hard for and was proud of, in a group where I was a senior member. My experience and work history made returning to work with a voice disability easier for me—but when I think of clinicians in training who have voice disabilities, I can only imagine that they’ll find establishing a medical career very daunting.

I have so many, many words and stories trapped inside me because they aren’t pleasant or easy to speak, and no one has the patience to hear me out.

Who will listen to me now?

Donna Lambers is a board-certified maternal/fetal medicine specialist who provided care to pregnant patients with high-risk pregnancies. Due to her vocal-cord paralysis and the COVID-19 pandemic, she was no longer able to practice medicine. As a researcher in obstetrics, she has published academic research in peer-reviewed medical journals. “This essay is the first creative writing and personal storytelling I have tried. Writing this piece and sharing my story has been cathartic and validating. I have enjoyed the challenge of sharing my feelings instead of analyzing research data and drawing conclusions.”

Comments

29 thoughts on “Silenced”

  1. Maya Angelou wrote in Inspiring Black Women: “One of my fantasies… I wouldn’t be looked at with such loathing….What scars does that leave on somebody… I don’t even dare examine it myself…When I reach for the pen to write, I have to scrape it across those scars to sharpen that point.” I also have permanent physical impairments that I have lived with for 48 years. I looked fairly “normal” until I started walking and trying to walk with a normal gait. I was completely paralyzed by a rare illness, GBS, which left weak ankles, and toes, and other lower body functions. I have always needed accommodations for work (like flex reporting hours to manage things involving my altered parts!), and even with Dr.’s letters, my employers would rarely be willing to provide those.
    I am a Patient Contact for newly diagnosed patients with GBS/CIDP Foundation Int’l. – we are volunteers who have lived through a similar journey….
    You have a rare Gift of Writing about those deepest feelings of having a ‘different functioning body’, and I hope you will continue writing about those people and places that still make it difficult to be a part of mainstream society. You are a blessing to those who struggle with similar issues. Thank you for sharing! Keep on writing!

  2. Wow, you are an amazing inspiration to many others with subtle dis(ability) to persevere & create other possibilities. Also to raise an awareness amongst families, coworkers & society about something that is one of the gifts we have & yet we take it as granted in our human life. Best wishes for your intelligent written voice to complement your vocal voice & kudos for a great job helping so many when they are loosing hope.

  3. I was very moved by your writing and all that you have gone through. My heart hurts with all you have lost and how you’ve continued to carve a new way to continue to help patients through their very difficult circumstances – and many comments above show just how effective your new communication style truly is. I will strive to be more mindful of invisible disabilities and to make whatever accommodations are needed for others to honor their needs. Thank you for your writing.

  4. Kayla Neumeister

    I am so grateful to have had the opportunity to learn from you and work with you during the first few years of my career. Myself, and some of the other sonographers often talk about things you specifically taught us, and how we use them every day. Your name is brought up so often! You are truly a light to everybody you encounter. I specifically remember you counseling and giving a diagnosis of anencephaly to a patient. It was by far the most heart felt and sympathetic consult I have ever been in on. However I remember many patient cases with you, because of your knowledge, kindness, and communication skills. You are one of the wisest, kindest individuals I have ever met. Thank you for sharing your story, as I met you after everything happened. I will continue to share your story.

  5. Thanks you so much. Beyond the painful issue of having an altered voice and having lost the tone, pace , inflection that fostered communication with colleagues and patients, you have made think hard about the advantage I have as a woman who has a deeper voice that tends to respected and seen as authoritative by others ( whether i deserve this or not) and the subconscious discrimination that I feel and must own up to – and that must be experience by those whose natural voices are felt as less pleasing and authoritative to the ear . Thank you so much

  6. Your living story really struck me and helped me. I understand and I feel grateful. Sometimes I also feel angry. I teach in medical school. I rely on my voice – well, I used to.
    My left recurrent laryngeal nerve is paralyzed due to a non-cancerous mass. The pear-sized mass was my errant left thyroid. Two surgeries later, my voice is better, but it is exhausting to talk for long. I get short of breath just going up one flight of stairs.
    Talking for long periods of time is hard. Some understand and make adjustments. Some don’t. I am tired of having to explain my physical disability to others. I will have another surgery sometime this spring for a permanent laryngeal implant that I hope will help my voice and breathing.
    I am grateful for my surgeons and the people that have helped me. I am grateful for you and this wonderful and brave article you have written. It really touched me.
    I wish you happiness!
    Thank you.
    -Nance

  7. Thank you for sharing. I can relate is so many ways. In what was EVENTUALLY diagnosed as muscle tension dysphonia. I had been unable to talk without excruciating pain for six years. Doctors passed it off as ‘allergies’. The head of a speech disorders clinic diagnosed me. Even after speech therapy I have to limit my talking drastically. In the past I had been a clinical psychologist and had done college teaching. For the six years I had to write notes to communicate with my husband..I was already disabled with a neuroimmune illness and had to give up work. No, people don’t understand so all we can do is plug along as best as we can and endure the reducible.

  8. Beautifully written story with a priceless perspective. Thank you so much for sharing this. I will more carefully consider vocal disabilities inside and outside my practice of medicine after reading this. Please keep writing.

  9. Thank you for sharing this powerful story. Though your physical voice may be impaired, your authorial voice is very strong. Please keep writing!

  10. This is such a powerful story… I’m sorry that you experienced these challenges, but grateful that you shared your experience. Hopefully many will read this and be more sensitive when they encounter people in similar situations. Thank you again and best wishes.

  11. Dr. Lambers, I empathize so much with you and told your story to another physician colleague recently who has had the same diagnosis and was lucky to finish her surgery without complications or residual cancer. I am so thankful for you, you’re still golden to so many of the residents you have taught. The way you have mentored me even after losing your voice to publishing our research amazes me. While others may indeed judge and wonder, when I hear you speak, I have nothing but utmost respect for you. And I am still in awe of your strength and the powerhouse Doctor that you are. Your legacy has already been set in stone. And I hear you loud and clear! Love! ❤️

  12. Reading this just solidifies what an amazingly talented person you are. I have learned so much over the years working with you. Your compassion knows no bounds and I count myself blessed to have you as my colleague, physician and friend. This article really touched my heart and I know it will make a difference for so many people.

  13. Thank you for lifting up a rather loaded exasperation for women in “having a voice.” Historically women have not had a voice. In light of this, what an intense experience this must be for you as you seek to continue in relationships and communication with patients and loved ones.

    I give thanks that you have employed another format for sharing this conversation.

  14. thankyou for sharing this. I had to illhealth retire with an – initially – invisible disability. its such a bereavement – not practising medicine, i feel. i think you are still practicing – but no longer as quite so obviously golden. have you considered teaching communication skills? not perhaps to agonise over your specifics – but to underline how the ‘smallest’ aspects of communication are so important – for clinicians but also for patients. i really remember seeing someone in ED who struggled to commnicate verbally or with writing. he couldnt walk – im guessing he had cerebral palsy. he had multiple masters degrees – really a specially smart guy – but didnt expect me to take the patience to hear his simple ED story. you and i know that we do make judgements about people as soon as they open their mouths (even if we shouldnt). you know about excellent communication! is this another way to be recognised as an excellent communicator? just an idea! with best wishes

  15. I’m listening.
    Keep writing.
    As a hearing impaired person, I can relate to your analogy. Often, people in a group meeting say they don’t need to use a microphone because their voice is loud enough. Hearing impairment is one of many less visible differences the unaffiliated fail to understand. Our writing about such topics helps, bit by bit.
    Thanks again, Pulse Editors.

  16. Thank you so much for sharing. I can feel the struggle as you right and cring at how you are dismissed. Thank you for writing this peace – I hope it will help me to listen more patiently and more deeply.

  17. You have my empathy. Although I have not, or not yet, dealt with a problem as severe as your condition, as a teacher, consultant, and friend I have relied on a voice over which I had control and which others said was pleasant to hear. Now my voice is unreliable, sometimes raspy, a wavering old lady voice. I know that influences others’ opinions. So please, make a point of letting people know about your disability before they can make up their minds about who you are. Ask them for patience when you need to speak slowly or softly. I think that will help them get past the relatively superficial physical issue and hear your intelligence, perceptiveness, and kindness.

  18. Joyce Sutkamp Friedeman

    You always have been and still are such an empathic and competent leader and role model in our family. Personally I want to hang on your every word because what you say is so meaningful and important. My family is “all ears” when you speak with us. You are wise, insightful and extremely warm natured.l am outraged that you have had to endure humiliation and feel “less than” because of the mild difficulties you have when you speak your truth.You are an angel and those why can’t appreciate that are losing a great opportunity to enhance their lives.by learning from you.

  19. Rebecca Conahan MD

    Thank you for sharing this powerful story. Your personal account of losing the nuances of voice communication was very eye-opening. I’m very sorry for the loss that you feel and I’m glad writing has been cathartic. I would like to share your story with medical students when I’m teaching communication skills in their practice of medicine course. I think it will help us all take skills less for granted. Thank you again.

  20. Oh my. Thank you so much for sharing. I of course have many ideas for you and that’s my rebellious and angry for your situation self. Tell those colleagues to STFU and sit down. Send a note to administration, that having you do ads is even more important now. Gee, you are human. And for your patients, please don’t stop telling them what’s what…maybe part of your self intro with a new patient, adding, “if you wonder what I am feeling, please ask.” You deserve so much more compassion and people working with you than you are apparently getting. Yea, no one came up to me with my broken leg and suggested I not use crutches. Take care. You do wonderful work, I know.

  21. You have illuminated well the disability of having an altered voice. I never considered it a disability before reading your description and struggles but now I do. I resolve to be patient with those who visibly want to say something but do not deliver their words in a traditional manner. Thank you.

  22. Thank you for sharing your sadness anger and pain in losing your voice. As is the case with any loss, we must adapt and find our way. You haven’t lost your gift, you’ve lost your delivery system.
    Have you considered sharing your loss upfront with colleagues and patients and explain that physiological loss? Perhaps as you adapt others will find a way to be more patient and hopefully listen to your message as you intend it. We walk slower next to a colleague who’s suffered an injury, open a heavy door for an older colleague perhaps- we make accommodations all the time for people- maybe try using your voice so that people can hear what you’ve been through and appreciate what it’s like. You deserve to be heard

  23. Honestly, you are such an amazing person and I feel so honored to have worked with you. I often call you my work mom and that is so true. Even though you are not physically near me, in my every day work I often think about what you would do in certain situations. I hope to be an MFM and mom like you!

  24. What an amazing story. I’m sorry that this has happened to you, but I’m glad you have been able to overcome this

  25. Thank you so much for sharing this. We really do take our voices for granted. I have never really stopped to think how necessary voice inflections are in the counseling I give my patients on a daily basis. And how dramatically that would affect my patient interactions and my job. I can’t imagine the struggles you went through losing your voice, literally. We all take our voices for granted. I am also a fast talker and take great pride in my conversing skills, and can’t imagine losing that ability. I only wish those around you had a little more patience to wait for your words. You are not silenced. You are only quieter, and we just need to stop to listen.

  26. Wow, your story was incredibly informative. I hope you share this article with all your colleagues, your students /residents, and every patient you treat!

  27. Tina Castañares MD

    It was very revelatory, instructive and valuable to me to read your story, and I thank you deeply for writing it and submitting it for publication. i’m very sorry that you had to sustain that injury, and all of its ramifications since. But I’m so glad that you have “lived to tell the tale” which is no small matter. It makes the world a better place. Mil Gracias for sharing.

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