I have a voice. It is different from the one I was born with. My Rheumatoid Arthritis attacked my voice box, this is called Cricoarytenoid. It is a rare thing to have. I seem to have hit the jackpot with rare diseases two in one body. There are three treatments for this that are brutal and scary.
Treatment one: Tracheostomy, which I have one. I have lived with a trach tube in my airway since 2011. The medical staff creates a hole in your windpipe and inserts a tube to serve as an alternate airway. It is painful. It is brutal. It is a pain to live with, however, I rock at it. I have accepted that I will always live with a trach tube. When my windpipe is completely closed, the trach tube keeps me breathing. I do not hate having one anymore.
Treatment two: Arytenoidectomy I have not had this done. I hope I never have to have this done. This is where they remove the vocal cords.
Treatment 3: Arytenoidopexy I have not had this done either. I hope I will never need this. This is where they attached the vocal cords so they do not move at all.
I have been in the process of grieving the loss of my voice. Although, I am sad. I am also relieved because my speech therapist helped me get an AAC device through Lingraphica. AAC stands for Augmentative And Alternative Communication. I use one. I call her Rosy. I named her after the Robot maid on one of my favorite cartoons, the Jetsons. Without it, I would be scrambling to talk to my caregiver daily, talk to my family and friends on the phone, or my medical team. I have had only one issue, but it is not the AAC fault. When I make phone calls to business or medical offices I get hung up on because they think I am a robot. I wish I could go into medical or businesses and teach them how to communicate with people on the phone with these devices.
There are a lot of delays because I am still slow. I do have set up messages that I can just click, but there are things I can’t create beforehand. When I had my surgery a couple of months ago, my AAC device came in handy. I was able to talk to the nurses, CNA’s, and doctors effectively. This made my treatment and healing better. I was not stressed and the Doctors, RN’s, and CNA’s were not scrambling trying to figure out what I was trying to communicate.
I am thankful my insurance covered the AAC device for me.
There are a lot of reasons why someone loses their ability to verbally speak, stroke, cancer, laryngitis, irritants such as smoking of cigarettes or any drugs, nerve issues, joint issues, and even dehydration can cause voice loss. That is why it is important to have tools that help someone to communicate. Not being able to speak and be heard properly severely causes one’s emotional and mental health to deteriorate. For me, I felt like giving up and not doing anything. I am better now. I have the device I need so I can communicate what I need. I am doing the best I can with all that I have and having the proper tools ensures I am living my best life.
If you know you or you know someone who needs an AAC device, I highly recommend the company Lingraphia. They have stellar customer service and they will even loan you a device to use while they work with insurance to get you your own. The device is simple to use and easy to put together.
And for those who don’t need AAC devices to communicate, all I ask is a bit of patience.
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