Losing my voice and learning to trust

At my place of business, we have a whole department dedicated to the wellbeing of our employees. The man who leads this department recently shared some deeply personal struggles in an intranet article for all employees to read. He was initially nervous about sharing, but doing so comforted people and helped them understand they weren’t alone. 

His story caused me to think about my own situation and how a fairly recent disability has affected me not only physically, but mentally as well. And while I’m pretty good at pretending I’m taking it all in stride, the truth is that I’m not always okay. 

 I have a voice disorder. Well, two actually. I started feeling something going wrong three years ago. Stress, anxiety and vocal overuse appear to have been the catalysts. 

 So, the biggest part of me – the part that makes me special, the part of me that my life has revolved around both professionally and personally, the part that allowed me to speak to my child, sing to the Lord, entertain audiences, anchor the TV news, emcee events, talk to my friends, share with my husband – is broken. My voice was a major part of my very identity and one that brought me endless joy. As a lifelong singer and entertainer, sharing my voice through song gave me a feeling of contributing to the happiness and entertainment of others, and it also helped me find my “tribe” — theatre nerds and stage rats, who became my second family and in whose presence I felt totally and completely at home. 

Now, not only can I not sing or entertain, I also never know when I wake up each morning if I’ll even be able to talk without tremendous effort. My new job (which even without vocal impairment would be difficult and stress-inducing) revolves around meetings, both Zoom and in person, phone calls, and it even requires that I give occasional presentations, all of which can now be heart wrenchingly challenging. Before this voice condition, I would have excelled at all of it and loved every minute. But now I’ve lost confidence in my ability to communicate. And all of this, as you can imagine, causes fear and in some cases extreme anxiety. 

People often ask how I’m doing, and I usually say I’m good/fine just to avoid having to talk more than is necessary. And I can often “fake it” in short conversations and in three or four word sentences. But the fact is, this situation has taken over my life. 

After a year and a half of struggle and visits to multiple doctors and speech pathologists with no answers, an otolaryngologist in Dallas who specializes in vocal dysphonia diagnosed me with two vocal disorders: Spasmodic Dysphonia (SD), which is an incurable neurological condition that causes the vocal cords to spasm during speech, and Muscle Tension Dysphonia (MTD), which is a condition where the muscles surrounding the larynx squeeze during vocalization. Here’s a simple explanation: For a “normal” person to produce speech or to sing, she breathes in, then pushes air out through the vocal cords. The flow of air causes the cords to vibrate, which creates sound. But when the cords spasm, as they do with SD, it stops the flow of air. For me, when that happens, the muscles “try to help” (MTD) but end up making everything worse. So it feels like I have a hand squeezing my throat as I try to talk, and it becomes a struggle to breathe properly. I feel like I’m hyperventilating while trying to push words out. (You can find much more about both conditions online. Only about 70,000 of the U.S. population of 333.2 million people have SD. So, in that regard, I guess that makes me special.) 

Anxiety, stress and high levels of emotion make it worse. Talking on the phone is incredibly difficult (it’s actually a common symptom of SD), so I usually don’t talk on the phone unless I absolutely have to. I mostly converse through text or email. I have good days when it isn’t as difficult to speak — not normal and still effortful, but not AS bad. But on the bad days it’s awful, and I literally try to avoid being around people, for fear I will have to talk. It’s exhausting, and it’s been devastating. 

 The “gold standard” of care for SD is botox injections into the larynx and/or vocal cords. I tried it four times — it didn’t help. 

 Only people who have a limiting condition like this can truly understand how lonely it can be. I am desperate for time with friends, but it’s so hard to carry on a conversation and practically impossible to talk on the phone for any length of time. I love going out to eat, but I have to really be having a “good voice day” to be able to have table conversation, especially in a crowded place or when there’s music playing. And, obviously, I’m unable to participate in theatre or to entertain, therefore losing rehearsal time and shared experiences with “my tribe.” 

So… where does this leave me from a mental health perspective? I guess it depends on the day. In the beginning, especially before I understood what was happening, when doctors and even loved ones told me nothing was wrong with me and that it must be all in my head, desperation quickly turned dangerous. I had thoughts I had never, ever had before — how I wasn’t sure I wanted to live without my voice and in a world where I couldn’t sing, perform or talk to people without effort. In a world where no one could understand what I was going through and didn’t believe me when I tried to explain. It’s an incredibly desolate place to be. 

It took me a while and help from a counselor to realize that I am grieving, and grief is a process. I’m grieving the loss of a part of myself, part of my identity. And while I am a Christ follower and love the Lord with all my heart, I have questioned why He would allow this to happen. It just doesn’t make sense to me, since He was the one who gave me the gift of my voice in the first place. 

But then, my ways are not His ways. And I take comfort in the fact that He still has a plan for me or I wouldn’t be here. And slowly, I am moving toward acceptance. Still hopeful to find the right vocal exercise or the right treatment to give me the chance to talk without so much effort or to sing again, but with the understanding that it is incurable and now a part of who I am. The struggle, as they say, is real and is a day-by-day, minute-by-minute thing. 

And maybe that’s one of the lessons I’m supposed to learn: to be still and to take life one day at a time and enjoy the moments. It’s a hard lesson. Possibly another lesson is that I should not identify myself by my gifts, but instead by the One who gave them to me. I’m trusting God’s promise in Romans 8:28 — “For we know in all things that God works for the good of those who love Him who have been called according to His purpose.” I’m learning to trust, even though I don’t know what’s around the corner. 

Like the leader of my company’s wellness department, the reason I’m sharing all of this is not for pity or personal gain, other than the fact that it’s been somewhat therapeutic to write it all down. I just feel that maybe one reason God allowed this to happen is so that my story can make someone feel less alone. It’s okay to not always be okay. And sometimes the journey is a little bit easier when you know you aren’t in the boat by yourself. 

 If you are struggling, please seek help. Don’t face the valley alone. Being still and trusting can be hard, but having someone standing shoulder-to-shoulder with you, or in some cases carrying you through it, can help you navigate even the toughest storms. Even when it’s hard to say the words, there is always someone willing to listen.