I am constantly reminding myself to appreciate everything I am grateful for, and reminding myself that everyone has problems, and some of them are WAY BIGGER than mine. All that said, this is what is going on with my vocal problem…
You’d be surprised how many people ask, what’s going on with your voice? And since I REALLY have to conserve my voice, I don’t want to use it up talking about it every time I see a friend. Since I’ve found myself doing that, I finally gathered the strength to explain.
Six months ago, I was diagnosed with Vocal Cord nodules. I was having pain to speak, and my voice felt strained, like a stretched rubber band. I also feel like someone is strangling me, or there’s a noose around my neck, or that feeling when you are trying not to cry and you get a lump in your throat—I have that pretty regularly. I do not have a sore throat like you get with colds, illness or strep. It is very different than that. On a good day, after I have had a few silent days, my voice sounds “normal,” but those close to me can sometimes detect a slight difference. I can hear that is sounds different, as I obviously know my own voice well, and I feel a strain to speak.
When I was diagnosed 6 months ago in Oct 2014, I was pretty upset because I already had surgery when I was 19 for Vocal Cord Polyps—which is basically one step worse than what I have now. At that time, I sounded hoarse all the time, and then would lose my voice completely, but I do not at all remember feeling pain or strain like I do this time. After surgery, I was not allowed to speak for 2 weeks. It was easier for me at that time, as I had both my parents nearby, and had roommates. If I needed to write a note or make or receive phone calls, someone was around to help. Also, because I knew the situation was temporary and that I had insurance and would be going to speech therapy after, I wasn’t really stressed about it; it was not a long-term problem to me.
This time, everything is different. When I was diagnosed, I was told to go to Speech Therapy, which is not covered by my Blue Cross Medi Cal insurance. The doctor gave me 2 names. One I called was $950 for the first visit, the other was $125 for 45 minutes, and so I went there. The Speech Therapist gave me vocal exercises and breathing techniques, explained neck massage, and told me to stop talking as much as possible. No more phone calls to friends and family, no speaking over street noise or loud restaurants, etc. She also said drink lots of water (I drink 3-7 liters a day now!), no caffeine, spicy food, dairy or alcohol… I am a very honest person. I told her I could cut down on these things, but there was no way I would not have a little caffeine or drink sometimes. She understood, they are guidelines, and I can honestly say, I cut my talking and social life by 85-90%, I cut my alcohol by about 70%, and Dairy by 95%, but I still eat mild salsa and was having a cup of coffee a day, until I realized this week I think I have to quit coffee too! Obviously I drink and talk to friends when I feel I can, sometimes that is like two nights in one week, but some weeks, I don’t go out at all.
It’s recommended I go to Speech Therapy for the problem, but I was told it is not covered by any insurance if you are over 21. I had to quit working and couldn’t pay for it with no income. I just went back to the second Ear Nose Throat Specialist I’ve seen and he managed to finally find a place that will take me, but getting an appointment is taking another 2 weeks. I asked both of the Doctors I have seen if they would complete my claim for disability since I am unable to work since I can not talk for more than short periods of time. They both have refused. The first doctor said because “she is not a voice specialist”—so she referred me to one that is not covered (by my Blue Cross Medi-Cal Insurance), and a visit costs $1700-3500! The second doctor refused to fill out the claim because he does not know the duration of time until I can go back to work, and he says they have to know that for the claim, so I can not get any government help for this disability. I have seen the form, and it does ask for a time period. The form is very limiting. They should let it be on a month-to-month basis and that would alleviate the problem. Humans are not machines, so it is hard to predict a disability’s time frame.
Right after my diagnosis and leaving my loud bar job of 8 years, I got 2 quieter bar jobs that I was unable to handle with this health issue. I was in so much pain from working 2 trial happy hour shifts at an art gallery/ bar, and one at a wine bar, that I had to accept I couldn’t take a job that requires a voice for 6 hours, even if it is not loud. With this issue, I can’t do any job that I am qualified for. My college degree I have to fall back on is “Speech Communications”—haha the irony. And during college, I worked as a receptionist answering phones, and also in retail—both require 6-8 hour days and being able to speak.
I tried to stay positive and after friends encouraged me, I busied myself by starting a DIY Punk Inspired clothing business, Punk Majesty, which I poured a lot of time, energy and money into for several months, and have yet to make any money. I am very proud of it though, and maybe when I’m able to speak regularly, I can schedule photo shoots and do more promotion and marketing, but without my voice to rely on, I have taken that business as far as I can in a room alone and through internet marketing. If I want to go further, I need to do photo shoots, networking, and talk to people in the fashion world to brainstorm next steps and to be able to sell. I’m starting to feel the weight of the world, so it’s on the backburner until I feel better. I have plenty of stock and an online store so it’s out there if people want it. I just can’t focus on it right now.
I finally decided while I have to wait to see the speech therapist, I have to work. I never thought this would drag on for 6 months and I’m starting to feel panic. I tried to get a job as a housecleaner, because I can do that with very little talking. After I aced an online cleaning test and did a 20-minute phone interview (in pain), they were supposed to email me the days and times I could come in for orientation. I waited and 2 hours later, got an email that said “Unfortunately you did not meet our criteria and we are unable to advance your application any further.” Wow. So I can’t even work as a maid. That’s upsetting.
I started researching “jobs for a mute person”, and things of that nature, and have yet to come up with anything. When I googled things like “jobs without a voice” or “jobs for people who can’t speak”, I couldn’t find anything, and PUBLIC SPEAKING came up… google throwing it in my face! I don’t know if anyone reading this can really imagine what it’s like to be an outgoing, social person who works in nightlife, who loves live music and dancing, and talking to friends… and then all of a sudden being unable to be yourself and speak, like the rest of the world around you can. I can’t call my friends, make and keep plans, or keep a job. I spend all my time alone, trying not to let it all get me down. It feels like I’m on house arrest in solitary confinement. I fight every day to stay positive and think about the things I do have in my life, but as 6 months turns toward seven, and I have not been able to live a normal life or date or have the possibility of anything really, it has started to feel like I’m in a personal hell. Friends have offered to come over and watch a movie, but if it hurts to talk, I don’t want a person next to me I can’t speak to. It makes me too frustrated and causes stress. And if they are there, I will talk to them no matter what. I can’t help it.
I have started to feel really down and am having trouble focusing on anything I want to do like writing or watching classes on YouTube to further my education. I force myself to go on walks and do yoga, which helps, but is very temporary. I don’t want to be depressed and I don’t want to live in a world where I can’t interact with others, because I thrive on it and it makes me happy. I’m having trouble knowing what to do. I was actually looking forward to being a maid, at least for now, to help me have a purpose, earn an income and keep my mind off this, but right now I don’t have any possibilities or end in sight.
I don’t like to accept help, especially financially, but my mom offered to help by paying for the voice specialist. I have an appointment for May 19. That is still over 2 weeks away. My life is on hold indefinitely. I’m told to be patient. That is much harder than it sounds. Sometimes I feel like I want to blow something up, and other times, I feel like I can’t move. I’ve always been extremely social and now I find myself feeling social anxiety. I really wish I could just be normal again. I realize I am being tested, but right now I am too deep in it to understand what I will learn from this. I hope there is an amazing lesson ahead that will make me a better person, preferably before I lose my mind.
So if you happen to see me out drinking and acting like everything is okay, it’s not, and maybe I shouldn’t be doing that, but I need to let myself do that sometimes to keep my sanity and feel normal. If you got to the end of this, thanks for reading. It was hard for me to write and share this, because I don’t like any of it, and would much rather share something I’m happy about or proud of.