Tag Archives | Spasmodic Dysphonia

My New Best Friend


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DSC_0829-1024x681 - Version 2I 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.

Parkinson’s, Dance, Spasmodic Dysphonia, Singing – and Joy


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Friday night I luckily tripped over a story on the Newshour on PBS, which was rebroadcast from December 2010.

Watch this video. Substitute…

  • “Dance” for “Sing”
  • “Dance class” for “Choir practice”
  • “Look” for “Sound”
  • “Movement” for “Speech”
  • “Physical” for “Vocal”
  • “Parkinson’s” for “Spasmodic Dysphonia”

Yes.

This is vocalizing with Spasmodic Dysphonia, and it is one of the reasons I am so happy to have returned to singing. Dancing and singing bring joy under normal circumstances, but even more so under these circumstances. My voice works better when I sing, just like they move better when they dance. And it hopefully explains what I mean by learning to speak more like I sing.

I am reminded of something my brother told me, that his singing instructor said to him: “Good speech is half sung.”

And there’s that Joy thing again. It keeps coming up.

Thanks for listening.

Update: Finding My Voice


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While this has been the year of Finding My Voice (metaphorically speaking), this has also been the summer of finding my literal voice. I have received a huge amount of support around my talking to people and blogging about my recent diagnosis of Spasmodic Dysphonia (SD). I want to say Thank You and provide a brief update before we return to our Regularly Scheduled Programming.

A number of things have happened since I originally posted about this on August 10:

I have had two sessions with a Speech Pathologist

I have had two sessions so far with a Speech Pathologist, and so far they seem to be helping. A lot.

We are working to improve my breathing and resonance, and the exercises are similar in many ways to those I had to do when I took singing lessons years ago. (I suspect that my familiarity with the concepts helps the process, but I think anyone can learn this.)

The exercises are a pain in the ass to do and my cats sit up in alarm (or annoyance) and then leave the room. They (the exercises, not the cats) make me speak in what feels like an unnatural way, but I am finding that, when I have done them, speaking in a new way comes more easily.

I have continued talking to people

I have continued talking to people around me about the process, and about my fears (and my successes) and that has also been helping. A lot.

As a result, I have gotten a HUGE amount of support. That support ranges from people reminding me to do my exercises to being patient with me on calls while I practice saying something, to providing me with feedback. People are telling me that they can already hear a difference in my speaking voice and that it sounds more even and less strained (at least some of the time!).

I am also learning more about how people perceive(d) my speaking voice. Some people have said that they never really paid attention to it; another told me that once she knew what was going on with my voice, she stopped hearing it. Not that she stopped hearing me, but she stopped noticing my voice and wondering what was going on – Why was my voice breaking? Was I upset? Was I OK?

I also received a lovely comment on my blog post from a woman who has had SD for years, and who is a trainer by profession. She said that now she tells her clients and students up front about her voice, and they are wonderfully patient and supportive.

I have joined a choir!

After my diagnosis, I immediately began looking for a group to sing with. I found the Broadway Chorus, a local community chorus, which meets about four blocks from my home. I took myself in hand and went to the signups; the director tested me and determined that I am (still) a First Soprano (much to my surprise). We just had our first rehearsal, and it was heaven to be singing again. It was a mixed bag in terms of how I did – sometimes doing better than I expected and other times thinking, “Yikes, did I make that sound?” But this is going to be a Very Good Thing. It will strengthen my voice, and my confidence, and it serves to remind me that there is more to my voice than how it sounds when I talk. Besides, singing is such a joy.

Oh, and the irony of the theme of our first program isn’t lost on me: It is the chorus’s 20th anniversary this year, and the theme is: Can’t Help Singing.

I am practicing Compassion with myself

This whole process continues to give me the opportunity to practice compassion with myself. I don’t perfectly employ the techniques I am learning, but I keep trying. I’ll do better next time.

Someone once said that “the difference between procrastination and time off is intent.” Well, the difference between being gentle on myself when I fail and having a lack of ambition is Compassion. (And Persistence.) Being compassionate with myself doesn’t mean I don’t keep trying. It just means there is no whipping involved.

I faced the opportunity to reaffirm my decision – and passed the test

As I came to the end of my group health insurance coverage under the federal COBRA program at the end of August, I spent a rather intense week researching my options. It looked at one point as if my diagnosis of Spasmodic Dysphonia 37 days before the end of my group coverage meant that I have a Pre-Existing Condition that would cost me another $200 per month in premiums when I switch to an individual policy. I reached a pivotal moment when I had to ask myself, “Was I a complete and utter FOOL to pursue this when I did, rather than waiting for another month?” And I embraced my decision. I was able to say, “No, I did what I needed to do when I was ready to do it.” (It also helped that several friends and family members reinforced that; not one said, “Boy, you really messed up the timing on that one!” Thank You!)

Oh, and it turns out I am eligible for extended group coverage through Cal COBRA. At almost the exact moment I embraced my decision, I got a call from my insurance carrier saying, “Oops, we’re sorry, we gave you incorrect information, you’re eligible to keep your group coverage after all.” Was that whole exercise just a Cosmic Test?

I am taking steps

I am actively working on developing a workshop I will lead; I am not letting my voice be an obstacle (or an excuse). More on that later.

I am more than my voice

If I believe that, then I have to let that More shine, and be confident in that shining. That’s kind of scary. And exciting. I have to embrace my voice. It is part of me.

Well, that wasn’t so brief after all. (Surprise!) Thank You, Thank You, Thank You to all of you who have been so supportive and who have helped me along this journey. I will continue to update you on my progress.

Now we return to our Regularly Scheduled Programming…

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