If Only

If only. I dislike that phrase. It sounds so regretful. I try not to use it or even think along those lines much. Even when I lost my ability to speak normally as a child, I never said, “If only I could do this or that." I decided to always do what I could with what I had. But now, after finally getting a diagnosis and a name for the strange way I spoke for almost forty years, and then hearing the doctor say that I could’ve been treated for the last twenty, all I could hear in my head was IF ONLY.

I was in a fog after meeting the doctor and hearing everything. Somehow I managed to get myself home. There was Jim.

I told him, “Honey, g-uess what? Ah-I’ve g-ot th-at condition. The d-octor told me he thinks I’ve got a classic c-ase of ssss-pasmo-odic dysphonia.”

Jim didn’t say a word.

“Sss-o, I’m supposed to s-ee ah-another doctor n-ext week. I-if he confirms th-e d-iagnosis, I’ll get a B-otox sh-ot,” I continued. “I-isn’t th-is amazing?”

Jim looked at me. He wasn’t jumping up and down like I wanted him to.

I spoke again, “J-im, d-on’t you u-understand h-ow b-ig th-is is f-or me?”

“Iris,” he finally said, “I don’t want you to be disappointed. You need to wait for the confirmation, and the treatment – it may not give you the results you want.”

“B-ut,” I told him, “ah-I’ve w-aited for a n-ame and a d-iagnosis f-or ah-almost f-orty years. Wh-y can’t you be ex-excited for m-e?”

Jim hugged me. “Listen,” he said, “you know I don’t get carried away with things like you do. I just want you to be aware of what can happen, that’s all. I mean, are you sure about all of this?”

Jim’s words troubled me, but in a way they eased me too. I needed to be realistic. Dr. C. said that he believed I have spasmodic dysphonia (SD) and that the treatment doesn’t work for everyone. “So,” I thought, “maybe I need to go easier on myself. Maybe the treatment wouldn’t have worked for me. Maybe I don’t even have SD!”

The next day I called some friends to tell them my news.

One friend said, “I thought you knew what you had. I saw the show about spasmodic dysphonia years ago on 60 Minutes. I just assumed you watched it too.”

Another friend said, “Iris, I’m so sorry. You know that I have another friend with spasmodic dysphonia, but he doesn’t sound anything like you.”

I replied, “He sss-peaks in a whi-isper, r-ight?”

“Yes,” she said. “I just assumed you had something else. If only I knew. I had no idea that both of you could have the same disorder.”

There were those two words in my head again. How could my friends not have mentioned any of this before? What were they thinking?

Another day passed. I was angry with myself and with my friends, but I had to be honest. What was my part in all of this? Did I not talk with doctors about my speech in the last twenty years? Did I make it hard for my friends to approach me about my voice? I always thought that doctors and my friends would tell me anything.

I knew that I didn’t completely turn my back on doctors. However, it now occurred to me that I had been talking to the wrong kind. I always spoke with my general practitioner and assumed that he knew everything. I needed to stay in touch with speech specialists, but I never understood that until now.

And, honestly, I didn’t share everything with my friends. I cried a lot about my speech in private, and I only shared that part of myself with a handful of people. As the years went by, most of my friends and family didn’t see my sad side; at least I hope they didn’t. I didn’t tell them about some of the people I met — people who laughed at me, mimicked me, or forced a conversation or questions on me when they could see that I was struggling to force out whatever utterances I could. Was I expecting too much from my friends? Perhaps. I realized, though, that I wanted them to know everything now.

I was tired of torturing myself with what I did or didn’t do. There were so many emotions welling up in me as my attention turned to the upcoming appointment. Riddled with a mix of excitement, sadness, anger and anxiety, I had to do something to calm down. I turned to all the notes I had been writing about SD. It had been less than a month since I first heard about spasmodic dysphonia, but my notes had piled up and gave me exactly what I needed – lots of facts.

The notes from my doctor’s visit said that I have the most common type of SD. It’s called adductor and it is characterized by spasms that cause the vocal folds to slam together and stiffen. The spasms make it difficult for the vocal folds to vibrate and produce sounds, so words get cut off, the voice sounds choppy, strained or strangled, and full of effort. It is difficult to start to speak, and spasms may occur on every other word, so the speech of someone with SD can be very difficult to understand. However, the spasms are usually absent while laughing, crying, or shouting, so the voice sounds normal at those times. Stress usually makes the spasms worse. “Yes,” I thought, “all of this describes my speech!”

I read more notes that said the disorder can affect anyone, but it is rare, occurring roughly in one to four people per 100,000. SD is most common in people between 30 and 50 years of age. I vaguely remembered hearing this on the radio, but it made me very sad to think how rare my case was since it began when I was only twelve years old.

“Yes, this is all definitely me,” I thought. “And it’s okay to feel sad. Now that I’m finally getting to the truth, it’s okay to be honest about what and how I feel.”

Filling myself up on facts was the best thing I could have done. With the appointment quickly approaching, I was feeling calmer and much more hopeful that my diagnosis would be confirmed and I would get the treatment. I could barely think beyond the diagnostic confirmation, but I found myself daydreaming with the use of those two words I so often avoid. “If only this will work for me,” I thought, maybe then I will actually be able to speak normally once again.”