SHHHHHHH!

There is another struggle in my life that I face but never mention. Not because it’s some big secret but because I wanted people to focus on the issues I was trying to bring attention to. I didn’t want more pity for myself. Most who know me personally, already know this about me. I can’t speak. Think about those past stories and maybe see them in a different light. A great example of how you never know what invisible troubles others are dealing with.

The reason I am telling people now is because I recently got a new Dynavox (electronic speaking device). It can help people with many things. Not only to communicate with other people but also to communicate with home conveniences that are controllable through voice. I wanted to write a story about it to help others like me. There are a lot of places where it’s just more convenient to type on my phone because it’s small and on a lanyard on my neck. But the Dynavox helps with many situations and gives the nonverbal so many new options. Also because I have learned many tips over the years including helpful speech apps. and I would love to share them with people.

I was able to get an Alexa device for the first time ever! The Dynavox is preprogrammed with a few preset phrases to talk with Alexa and plenty of space to preprogram your own statements. It has commas to create pauses so Alexa listens. For years, I’ve had a firestick with this voice button I couldn’t use. I want to find out what is available in home convenience technology to make life a little easier for people. I want to do stories on everything I can so please let me know if there’s a certain product you would like me to research. I want everyone to see what is available to make their lives a little bit easier. Of course these home conveniences are available to most but some that are only operational by voice are usually not usable for people like me. I think it’s interesting to see how someone can get past those extra obstacles. 

Funny story- I was doing chores and had the tv on for “background noise”. I love Schitt’s Creek so from across the room, I hear “Yes! I am here! How can I help you?” I nearly hit the ceiling because I live alone. The thing heard the tv say “Alexis” hahahaha

Not gonna lie, not being able to speak makes most situations so much harder. I lost so many people and things over my lifetime and miss them all. Especially the people. I definitely have those moments when I get so upset and think:

– I’m a good person. I always want the best for people. This isn’t fair! How much loss can one person take in a lifetime? Why do some bad people get breaks that I only dream about? Why can’t bad things just be spread around and not all come for me? People are in prison for life or being put to death with completely able bodies but people are out here being good and suffering being unable to do so much! How is that fair?-

Losing my voice is definitely one of the most difficult things I’ve lost. In a lot of ways, this was more difficult than losing my ability to walk. The world has adjusted to wheelchairs but not nonverbal people. It definitely causes so many problems! I’m unable to pick up a phone. Even in an emergency. I need to ask for help making the simplest phone call and sometimes wait days to do something I used to be able to do immediately. I can’t do so many things and need to take extra precautions everywhere I go because I can’t scream for help. I don’t even answer my door unless I’m expecting someone. I haven’t been able to change my cable plan for years because they require you to get on the phone, a usual ten minute issue with a business always turns into hours stuck in an office because the world really isn’t very accessible. I’ve had delivery people call me with a question and I couldn’t answer so I just got passed by. People will talk to other people who are with me to ask me something instead of talking to me. People look at me like I’m from a different planet because it’s so foreign to them and they don’t know how to communicate with me. So I’m constantly teaching people how. It’s not their fault. People aren’t really educated on understanding differences. School’s teach about people who lived hundreds of years ago but not people they’ll see a lot in life. A shame.

I usually go to the library to write without the distraction of my never ending house chores. But there are certain stories that I have to write at home because they are emotional things to remember. Stories like this usually take longer to write because I constantly get overwhelmed and need breaks. Some stories just bring up so many awful memories. This has taken weeks to write.

I went through so many doctors who weren’t sure how to handle me and I could tell some didn’t want to be bothered with me. Some offices were horrible trying to communicate with and maneuver through without breaking something. You lose a lot of confidence every time. I can take ignorance and rejection from a lot of people but it is very different coming from people who were trained to be understanding and empathetic. A doctor’s entire profession is about making people feel better. When they leave you feeling worse every time, there is a big problem.

I eventually found my current Doctor. I had been through so many doctors so I just expected the usual. When people have to go to the doctor, it is sometimes during the worst times of their lives. Doctors are sought out when people need help and need to be heard. It is harder to hear me so it makes me really appreciate the people who do. It takes a lot of empathy to accommodate me and I appreciate it so much! Especially since I often feel so awful because many people refuse to take the time or don’t want to be bothered.

I don’t think my doctor knows just how much she means to me and why. The many previous bad experiences I had that shaped how much more I really appreciate good people now. She genuinely listened and cared. Not many people handle my communication issues so well and it takes so much pressure off of me when someone does. Very often, you are fighting your own constant obstacles and also helping others navigate it too. I’ve gotten awful treatment from many other doctors. It makes you jaded.

When this doctor really “heard” me, it was so amazing! When she said “It must be hard because you can’t release your anger in the usual ways. Yell, run, hit something…..” that is when I knew that she truly understood and empathized. That she took the time to think about me beyond what I told her. That meant so much to me. She puts aside extra time for me and truly listens to what I have to say. I never once felt rushed in any way! Some people search their whole life for a doctor who is right for them and never find them. I feel lucky that I have! 

It’s hard to find an office where the doctor AND the staff are great. Very often you get one or the other but in this office, everyone is wonderful and so helpful! They all go above and beyond. They are like family to me! Even people that belong to other offices are always extremely nice! They are all so awesome! I dread going most places but never there.

I have my speech device but I also type on the notepad on my phone. Sometimes it’s easier but I always feel so rude shoving my phone at people. Still after all these years. That’s how most people learn this if there’s nobody else with me. I think it’s rude but I don’t have options most of the time. At first I was too shaky to hold a phone and my therapists made me communication boards. When I finally got a phone, people would have to hold my arm still because it would fly far and constantly. Like it was trying to escape from my body 😂 I accidentally punched a few people back then. Fun times! 

People often yell at me assuming I’m also deaf. Other people take my phone to write back or mime everything in silence no matter how many times I tell them that I can hear and don’t understand anything they are miming. People have rummaged through their things to get a pen and notepad. It all really says a lot about human intelligence. I’ve literally answered people’s spoken questions but they still ask other people if I can hear them. I’m screaming in my head- I JUST DID! Some people should probably be wearing a helmet. 

I don’t love attention but I now have to demand so much from people constantly and it’s mentally exhausting. Sometimes I just want to be invisible but I’m a virtual bright street sign with flashing lights that everyone looks at and pities. Pity is a horrible thing that I never want but something I expect from strangers. Never from friends. 

I really can’t just enjoy the moment because I’m constantly typing on my phone. That’s why I like to be alone sometimes. It can be so exhausting to do a simple thing. I absolutely love being around those people who just understand my charades without me having to say anything. People I can spend hours with and say so many things without needing to type a word.

There’s a show I love called Speechless. The main character is in a wheelchair and can’t speak. I can really relate to him. This speech is one of my favorites because it definitely describes how I feel…..

https://youtu.be/cjLmQUE6iUw?si=V2FyG_r-JVGSO94g

Every single time I leave the house, I’m guaranteed many difficult situations. EVERY SINGLE TIME! Even having people over means a lot of work for me. At times, I get terrible pain in my hands so while someone is assuming I’m unfriendly or mad, it might be because my hands feel like they are on fire! I may sometimes seem snooty or unsocial around bigger crowds but it’s because accommodating me will greatly inconvenience someone. So I just observe people instead of bothering them. It doesn’t matter how many times someone says I’m not bothering them, I KNOW I am. You learn so many valuable things about people when they don’t think that anyone is looking. Things people usually don’t tell you. The real parts of someone. 

I’m not one to get my nails done often but wheeling my chair and constantly typing takes a toll. I went to a nail salon because it happened to be next to somewhere else I was going. I had to type to tell them what I needed but they couldn’t read English so I couldn’t communicate with them. I was so upset! They had to download an app that could translate pictures. Took a picture of my phone and waited for it to be translated. So a 25 second conversation took 15 minutes.

I saw a throat specialist who did a video scope on a big screen in front of me so I could see. By the way, the throat looks really perverted haha He said he sees this very often with brain injuries. My vocal cords work but not when I want them to. The signals got all scrambled. He said a usual speech therapist wouldn’t work for me (a few therapists would be so relieved to hear that) He gave me contact information for a vocologist. He said if anyone in his family had the same issue, he’d send them to this woman. He said it almost always works. Do you know what a big deal that would be and what a huge difference it would make in my life? I could talk again! But they aren’t medical doctors so they don’t take insurance and it might be too far.

I used to have so much to say but when it became so inconvenient for others, I stopped saying a lot. I love gatherings of people who I love but these are also much needed breaks for them to relax. Constantly having to lean over and read what I write isn’t relaxing for anyone! So I say less at those times and just observe. People can’t get to know me most of the time and attempting to is so inconvenient. I wear sarcastic shirts and hats to show people that I really am approachable and have a sense of humor because I can’t relay that in the usual ways. No matter how independent I can be at home, I depend on help and kindness everytime I go out and although I hate inconveniencing people, I constantly do. I’m a great friend in ways that I can control but I know that I’m also a lot of extra work and that’s the last thing people want more of after dealing with all of life’s other hassles.

I’m amazed at how many people can’t even read English or any language at all. I have always loved kids but can’t really talk to them anymore until they are able to read well. Kids are always so eager and willing to learn so it’s unfortunate. There are many I can’t communicate with but just those two groups make up a big percentage of the population that I can’t even talk to. Others get all political about foreigners learning the language but my need for this isn’t political. Many don’t realize how important a voice is until you don’t have one. It’s rough. I say 5% of what I think. It’s like being a prisoner in my own head. I was always wrapped up in words, from when I was a toddler, and loved every part of them. When I lost my ability to use them, I lost a huge part of my identity. So I’m going to work on being one of the loudest voices in written form instead because I still have so much to say and am finding other ways to say them.