Tag Archives | Spasmodic Dysphonia

I have to tell you a story.

I had a job interview a few days ago, one I was very excited about. I had made it through two cuts after submitting a cover letter and answering ten essay questions. I went into it – and came out of it – very excited about the opportunity, working to help grow a small company to the next level. Their materials talked consistently about two things near and dear to my heart: Community and Curiosity, and it would challenge me to use skills acquired throughout my career.

The interview went pretty well; I felt like we had pretty good rapport. He had me start with questions for him, and I was ready. This isn’t his first startup; what had he learned from launching previous companies? What did this job really entail? The description hadn’t been very detailed.

I liked his answers. Thoughtful. Honest.

He asked me about my strengths, and my challenges. I talked about my organizational skills, my abilities to build and improve processes, my communication skills, my facilitation skills, my relationship building skills. Regarding challenges, I’ve had to learn to deal with conflict using the tools I coach others on. Keeping my writing short and succinct. Living with my voice. He asked about my voice, and I explained it has been diagnosed as Spasmodic Dysphonia, a neurological condition that is similar to stuttering, except it affects the vocal cords. I have had some success with speech therapy, and I have chosen not to pursue the recommended medical treatment – there is no “cure” – Botox injections to the vocal cords. It can be challenging, I said, to get on the phone, to do Skype calls, but it doesn’t stop me.

We went on. He asked, What am I passionate about? I told him I’m passionate about building things. About solving puzzles. Holding the space for people to do their best work. Almost as an afterthought, I added, “Working with horses. I am also a coach, and I incorporate horses into the coaching process.” He made a note, and told me he had just hired someone for another role who also works with horses. He said, “You’ll probably get along.” That was encouraging.

At the end, he asked the Million Dollar Question. This is a start-up, he said, and we expect everyone to give it everything they’ve got. What do you think about that?

I was ready for that question, as it was my only concern. I told him I had worked for start-ups before, and worked in a variety of roles where I put in long hours. And it had taught me the importance of setting boundaries, of reserving space to do the things that feed me so that my work is sustainable. So I am careful about setting boundaries, and I encourage others to set boundaries too.

He kind of grinned – or maybe it was a smirk, this is a guy who sends emails at 10pm and 5am and on Sundays – and said it was always interesting to see how people responded to that.

We wrapped things up, and he promised I would hear from him by the end of the week.

I sent him a Thank You note by email, thanking him again for the chance to talk. And I reiterated that, while they couldn’t have “everything I’ve got,” what they would get would be really damn good.

I was cautiously optimistic. But he was interviewing 11 other people, and I suspected that my unwillingness to work 100 hours a week would eliminate me.

Much to my surprise, I got a response later that afternoon. He thanked me for my time, and said,

“There’s a lot to like. On reflection, I think the speech condition must be a non-starter for us. I need you forward facing in many many situations and roles, and with people much less sympathetic than myself.

Best to be straight about that.

It’s possible at some further point that there are additional roles, but for now, presentation in diverse situations is too critical.”

I was stunned.

I had to read it several times.

Not because he cut me.

But because he cut me because of my voice.

And he might be willing to hire me in the future if he could hide me.

I sat with it for a little while, then sent him a reply. I thanked him for his honesty, and said I understood – and that I had to push back. I pointed out that I don’t let my voice stop me, and I lead meetings, conference calls without video, and even workshops – all very successfully, because of my facilitation and presentation skills. Making a lot of cold calls would not be a good fit, but when it comes to facilitating meetings and building relationships my voice has not been an issue. In fact, it has been an asset in two ways: I tend to not waste my words and I have been told that my being “soft spoken” causes people to lean in and pay attention.

Then I got furious.

And had a good cry.

I was stunned. And angry. And disappointed. He went for my underbelly. That’s not “sympathetic.” He could have just said there was someone else who was a better fit. He could have said he really needed someone willing to give it all they’ve got.

But he didn’t.

He revealed himself.

*  *  *

Four different people checked in with me to see how it went, and I told them. Each one was appalled, not just for my sake but because, as each one of them put it, “I don’t think that’s legal. Did he really put that in writing?”

Yes. Yes, he really did.

I had another good cry.

The next morning, he replied to my reply, saying,

“Of course I trust you won’t let it stop you! I’m only saying that I personally found it a distraction.”

*Facepalm*

I wrote a response, saying (among other things), that I actually expected him to tell me he was looking for someone willing to work 100 hours a week, or that he had a candidate whose skills were a better fit, and I would have understood. But he had self-selected himself out of the people who appreciate me for the quality of my character and skills rather than a physical characteristic. I suggested he consider getting sensitivity training before someone else with a distracting physical characteristic reacts less kindly to being excluded.

But just before I hit Send, the wise Voice In My Head said, “Just walk away.” So I saved it to Drafts. I sent it to one of the dear friends who was appalled on my behalf, someone who has been a hiring manager herself, because I was torn between wanting to get The Last Word (and maybe even helping him somehow) and just walking away. She sided with The Voice In My Head.

So I let it go. I took a long hot shower and went to an interview with a different company – which went very well and we are going to the next step. Then I spent the rest of the day sending invitations for my new series of retreats and workshops.

*  *  *

I have sat through many tedious corporate compliance videos in my career, but I now understand first hand that this is why the Civil Rights Act of 1964 and the Americans with Disabilities Act of 1990 are the law of this land. They were enacted to help us become comfortable with being uncomfortable, so that we could look through the differences that distract us to see each person’s gifts and abilities.

These laws don’t cover everything. But if we are able to cultivate a willingness to look past certain attributes, that helps us be willing to look beyond all kinds of distracting attributes to really see the person.

* * *

But that’s not the point of this story.

Even though this episode hurt, it gave me a great gift.

It has given me the chance to reflect and articulate how my voice has been an asset in various ways, including helping me exercise courage and compassion for myself – and for others. I applauded myself for all of the times I have chosen to get on the phone, to lead the conference call, to schedule the workshop. For all of the times I haven’t let fear of my voice stop me.

It also has helped me to appreciate more than ever the people who haven’t been “distracted” by my voice and who have valued what I bring to the table, including people who have asked me specifically – and repeatedly – to use my voice in leading workshops, moderating panel discussions, facilitating team meetings, leading difficult conversations, coaching them through rough spots, asking powerful questions, and speaking truth to whatever is happening.

I am immensely grateful for all of the people who are more interested in what I have to say than in how it sounds.

They are my tribe, these people who see Me.

He is not. He can only see my “distracting” voice.

I am grateful that he revealed himself.

I am grateful that I, too, have been revealed. I got to watch myself handle this differently than I might have several years ago, when I might have taken the bullet and let it make me feel Less Than. At one time I did let my voice hold me back, let it reinforce some story that I’m not good enough. But I have chosen, and worked, to not hold myself back. I need not be ashamed – of my voice, of anything. There is no secret to hide, to hide from.

And I’m grateful for something else.

When I received the diagnosis of Spasmodic Dysphonia five years ago, I chose not to go with Botox shots in my vocal cords for a variety of reasons. Some people do; good for them. But I do not. Because…

…Botox. It’s a poison. Eew.

…I can still sing. And no one could promise that the Botox wouldn’t give me a different speaking voice but take away my ability to sing. I’d rather sing.

…Botox doesn’t work for everyone, and when it does it is temporary. It also causes people to effectively lose their voices for approximately a week after each shot. I’d rather have some voice all of the time.

But most importantly, I chose not to go down that path because for ten years I had increasingly hated my voice. I saw it as The Enemy. But when you hate one part of yourself, you hate Yourself. I didn’t want to live like that anymore. I wanted a truce. I wanted peace. I wanted to make friends with my voice again. And I felt like shooting it with poison would be stabbing my voice in the back.

That’s not what you do to your friends.

So I have spent the last five years making friends with my voice. Taking it everywhere I go, being willing to be Seen. And Heard.

And this week I realized that my voice has paid me back handsomely with a great gift.

By showing me what I’m really capable of.

That’s what friends do.

Today I can say, loudly and clearly,

My Voice. And I. Are Friends.