I've always been a very meticulous person – everything planned and well thought out from top to bottom, beginning to end. Some think of that as control-for me perhaps it was perfectionism. And I was definitely a talker, born that way. I spoke at a very early age and spoke like an adult to everyone I met with no apprehension. It was part of my personality and honestly, I loved to meet new people and learn new things. Some people are quiet processors – that was not me. I was always a bridge builder, taking information or experiences with me as I journeyed to discover new worlds, people and ideas, ready to share and ready to learn.
When I graduated from college, I moved clear across the country to San Diego, eager for adventure. Jobs were tough to come by so I worked in sales during the day and a restaurant at night. Again, my life centered around talking, using my voice for self-expression, explanations and connections.
Eventually, I returned to the East coast, got married, had my two sons (my proudest accomplishment), earned my master’s degree and worked as a therapist with adolescents. Why does this matter? Talking and being heard. There it was again. There is one more thing to be said about this career choice. I chose counseling for a reason.
Twenty-four years ago I started my career at RBR. As a counselor, conversation was a huge part of my day, and I loved it. Connecting with teens, families, and community members was stressful, but glorious. I finally felt like I had come home and was doing what I loved. And I loved RBR- my boys were raised in those hallways. As a single mom, they spent many weekends at school events with me.
There are many things in life that we cannot control. Learning the difference between those things we cannot control and those that we can is a lifelong struggle some may never master. Six years ago something began to happen to my voice. At first it seemed like laryngitis except it never left. A colleague trained in voice actually made the original diagnosis. After visiting several doctors I ended up in NYC. The diagnosis was dysphonia, a neurological disease of the vocal cords. I was in disbelief. I sat in an office with people with all types of neurological issues and thought I was done. Would it get worse?
The doctor assured me that there was a possible treatment for this-injections directly into the larynx while I was awake using Botox. As terrifying as it sounded I immediately agreed. At this point speaking was breathy and halting and my muscles hurt from the effort. He recommended a specialist and off I went. That experience was a horror show- the injection was too strong and I was left totally speechless for a week. When that injection eventually wore off I promised myself I would find a new doctor. In between I tried meditation, speech therapy, yoga and acupuncture- none of these helped. Despite my apprehension I was back in NYC for round two of injections. I found a new doctor, and I would go to the city every six weeks for injections, one side of the throat at a time. There were some powerful side effects. Drinking anything was a challenge after shots. If I swallowed quickly I could easily choke. I will never forget jumping out of my car on the side of Rt.18 thinking I was going to aspirate and die. Another effect was breathlessness while doing simple things like walking up a small flight of stairs. So now I had some voice but could choke or wheeze at any given time. I made the decision to stop the injections. After some research I changed my diet to gluten free-hoping for help with inflammation.
Throughout this struggle I had voice but it still often sounded like a cold. Sometimes it would sound like I was about to burst into tears. Other times, with the quavering in my voice, it sounded like I was angry. All of this was exacerbated on the phone. Nothing was worse than phone conversations. Even on a good day, by the end of the day, I just didn't have the energy. Thank goodness for email and text.
Of course this did not go unnoticed, and the more noticeable, the more stressed I would become and the worse it would get. My perfectionism still existed, but where speaking was concerned, it had to take a backseat. That didn't seem like an option for me. Now, I choose my words. There are times I decide they're not so important because the effort is too great. Casual conversations have definitely declined. And loud restaurants or loud social gatherings-nothing is more frustrating. Even on good voice days these situations make it impossible to be heard.
And people- they say the darnedest things. They remark on voice, voice quality, perceived emotions, imagined illnesses, and the list continues. They make faces when your voice hesitates and faces when they can't understand a breathy consonant. Sometimes I offer an explanation and other times I walk away. But I remain a survivor.
Last year I began a new journey to improve my health with an intense diet and exercise program. It was a struggle to gain momentum with my constant breathiness. However, as I pushed through I saw a gradual improvement. Through training my confidence began to build. Perhaps I had little control over my weak voice but I gained control over my body. I began to accept that I could not control my voice, but I could build upon my strengths in other areas. Little by little I accomplished small successes that I never thought possible.
I am fortunate to have guidance, support and love along the way on this journey. Why am I sharing this? First, to bring awareness to a little known neurological disorder that, while not life threatening, is certainly life altering. But more importantly to send the message that there will be things in life we cannot control. We can choose to surrender or we can refuse to let these things control us and our destinies. The writer Alexandra Elle said, "I am thankful for my struggle because without it I would not have stumbled upon my strength."