No matter how hard I try, my chair always makes more noise than I would like it to. Especially when I’m trying to be quiet. 🙂 Comments and shares welcome.
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Stealth is not something I excel at.
I Have A Lazy Boy everywhere I Go
One thing most people don’t know is that power wheelchairs can recline — and when you’re out in public, that feature tends to draw a lot of attention.
Reclining isn’t for relaxation. It’s often necessary for medical reasons, pressure relief, or pain management. But when people see me reclined outdoors — even on completely level ground — the most common question I get is:
“Are you okay?”
This comic, “Finding My Angle,” comes from those moments. It gives a glimpse into what it’s like when a normal part of my day looks unusual to everyone else.
I’m creating more of these comics to help people understand experiences they might be curious about but aren’t sure how to ask. Humor makes those conversations easier and more human.
I’d love your thoughts:
Comments and shares welcome
hashtagAccessibility hashtagWheelchairLife hashtagDisabilityAwareness hashtagAssistiveTechnology hashtagInclusion hashtagRepresentationMatters hashtagStorytelling hashtagComics hashtagAdaptiveTech hashtagPerspective hashtagHumanExperience hashtagCreativity
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When Superman can’t help someone it’s worse than Kryptonite
I don’t really have daily stress like most people. I have lived most of my life not sweating the small stuff. Clothes, hair, work, any aspect of my personal life I don’t worry about because whatever happens, I’m going to be fine.
Where I struggle is worrying about other people. Specifically those close to me. One of my favorite TV shows is The Blacklist on NBC. Mostly because of the main character Raymond Reddington, played by one of my favorite actors, James Spader.Â
Raymond is known as the concierge of crime. Basically, If you are a criminal with a Problem Raymond has the resources and connections to make your problems go away.
Raymond is this flamboyant man in a fedora who has all the answers. if he doesn’t have the answers, he will find someone who does. This is how I have seen myself for most of my life. I get crazy satisfaction out of solving people’s problems.
I don’t really like to admit this but there are many aspects of my life that I can’t control. I don’t decide when I go to bed at night or when I get up in the morning. I can’t get up at 3 a.m. to go to the restroom without waking someone else up for help. Simple things that most people take for granted every day. I deal with this frustration by trying to help someone every day. it may be a kind word, a few bucks, or a gift they didn’t expect. I’m always doing something for somebody because that’s how I cope.Â
I have wanted to be the Raymond Reddington character my whole life, (Not the criminal obviously) but a man with unlimited resources who could go anywhere at any time with the ability to solve any problem. As early as 14 I thought I was going to be famous, with the ability to write my own ticket and help whoever I pleased.Â
I’m 42, and while I’m more famous than most people, thanks to a podcast and an attention-seeking personality, I’m not really where I had hoped to be at this point in my life. I’m okay with it most days. My life is good, I have a great family and I’m blessed In ways that most people can only dream of.Â
That said, In the last few months I have watched friends and people who are close to me struggle in life and I haven’t been able to help. I want to get on the private jet I’m supposed to have and go save the day. Not being able to is really hard for me to handle. I feel powerless. That is not something I’m accustomed to feeling. It’s not a good feeling.Â
I’m writing this today because I know many of you have felt this feeling. Especially over the last year, and I want you to know you are not alone. The prayers that I pray each day have become more important than they were just a few years ago. I hate being powerless, not having the answers, not being able to solve the problem. I keep from going crazy because I understand that someone bigger than me,  who is watching me go through what I’m going through is in charge and wants the best for me. All I have to do is hang on and do my best to help those that I want to help in small ways Until I can do more…Â
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The first voice on the radio
I have debated whether or not to say anything since I heard Rush Limbaugh passed a few hours ago. As I write this I’m still debating. I feel like I have to say something because I love radio. If I’m real honest, Rush was probably the first radio voice I ever heard. The reason for that was because he was on while my grandfather, uncle, father, were out doing whatever they were doing, he was on in the truck and I was there. I’m not interested in debating politics today, because it’s not really about that. Whatever your politics are, a giant in radio has passed and that’s a big deal.
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Having Cerebral Palsy means putting yourself in a vault during a worldwide pandemic
I haven’t left my house in 4 weeks. I haven’t even put on a pair of jeans in 4 weeks. Having Cerebral Palsy means I’m at higher risk of getting sick, but to be honest, staying in is not about staying well for me. I don’t fear sickness. I’m trying to do everything I can to stop the spread so we can all get back to normal faster. The “comfy pants” are getting a workout. I’ve been hearing from a lot of folks online who are struggling with cabin fever and the challenges of finding interesting or useful things to do.
I hear people saying things like
“I’ve already watched everything on Netflix, Hulu and Amazon Prime.”
“The dog has been walked so many times she runs away when I get out the leash.”
“My jigsaw puzzle library has been exhausted.”
I have to be honest this is not something that I struggle with. Since all this started I have filled a 12-hour plus day with no problems. Maybe my experience can help you!
The key for me has been having actual work to do. Anyone that knows me knows I’m always working. I have a podcast that has been on the air for 15 years and still going called Gaming Uncensored. We talk about video games but we do everything we can to make it entertaining and accessible for everybody. You can find it right here. http://gaminguncensored.com/
If you have read this blog for any length of time, you know that Evie and I do lots of different projects together. The main thing we are working on right now is a 3D World that you can visit on your computer using only your web browser. Evie (have I mentioned that she’s multi-talented genius?) built the world and has a hand in everything you will see there We call it 3DWebWorldz and you can find it here. https://3dwebworldz.com/ We have an amazing team working hard on amazing things for you to explore and enjoy.
We have live streaming video music concerts every Friday night at 6PM pacific time to keep you entertained. You can join your friends, virtually, and have a night out without worrying about Covid at all! You’ll find a full schedule of upcoming music events at https://livemusic3d.com/
We also have an extremely active writers group that is made up of some very talented authors. They use the platforms to brainstorm with other writers, and they have great books that they would love for you to read. You can find out more about them at https://fictionfountain.com/ It’s a really fun place to explore and meet people, which is something we all need during these crazy times. Just recently the writers held a book expo where they each read from their books and took questions from the audience during Author Q&A as you can see
The event was a huge success. Readings were done in voice and it gave the authors a chance to promote and sell their books to people from all over without leaving home.
One of the writers is, of course, Evie. She has multiple fantastic novels that will keep your brain engaged and take you on an adventure. (I should know, I’ve read them all). You can find out more and purchase them here. https://yvonnedebandi.com/
This has become the longest post I’ve ever written on this blog. The point is not to say look at all the cool stuff we’re doing to keep you from being bored, you should support us. I would love it if you did :-)) The point is to put forward the idea that if you are struggling during this time of quarantine, there are things to do and great people to meet. If you are a performer, we can help you connect with an audience!
Writers and Teachers will want to take a look a the Smart Action Software tools we’ve rolled out to help you advance your skills and manage your projects. They are available with a special free preview offer right now.
The “silver lining” about being stuck in your house is that you have time to explore new hobbies and learn about yourself. Find something new that you really enjoy and work on it every day. For me it’s writing, podcasting, promoting online live music and fantastic new 3D meeting spaces. It can be something totally different for you. During this time you actually have time to explore and figure out what you really enjoy.
This is a tough and scary time for many of us, and I’m not making light of anything. I just wanted you all to know that I’m here and want to help in every way that I can. Stay safe and healthy and don’t hesitate to reach out. I’m just an email away.
As always thanks Evie for giving me a place to write when something comes to mind. Her genius is what drives me to keep working every day. Until next time.
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Everyone fights fear
I’m supposed to speak to a small group of city workers in a town near me tomorrow night. I’m not nervous about who will be there. I’m not nervous about the size of the crowd, I’ve spoken too much larger groups. I’m afraid that I simply won’t be funny.
I saw a TV show several years ago featuring a bunch of very famous comedians, Jerry Seinfeld and Jay Leno among them. This show was after the completion of the Seinfeld TV series & whoever was in charge asked Jerry a very simple question.” Why are you still working on new stand up? You have all the money in the world, and more coming in each day. Why not enjoy your life?” His answer was ” I wake up every day wondering if I’m still funny.” He went on to say what if I don’t have it anymore?
Each of these successful comedians echoed the exact same sentiments. They were all terrified of waking up one day and not being funny anymore. My mom was watching the same television show in a different room. When it was over she came to my room and was almost pale. When I asked her what was wrong, she said: “you sound just like them”.
A couple of weeks ago I got sick and lost my voice for about a week. This happened while I was in Dallas with major plans to record several hours of audio content for my podcast Gaming Uncensored with my buddy Tommy. Turns out one of those days I was not able to do anything but whisper. We didn’t create the content that we intended to create and while I enjoyed hanging out with him, one of the major purposes of the trip was taken from me.
During this week of Silence. I started to wonder who I would be if I couldn’t speak? You are thinking “that’s dumb, it was only a momentary sickness.” While that is true logically, the question still remains who would I be? Honestly, I don’t know the answer. Speaking has always been a gift, a joy that was given to me. I’m very grateful this week that I’m going to get to use my gift.
Everyone has gifts, don’t take them for granted. Tomorrow is not guaranteed. You can lose what you’ve been given in a blink. I still wonder if I’ll be funny tomorrow but I’m going to use my voice with everything I have. Find a way to use your gifts. You’ll be glad you did. As always Thank you to Evie for expressing all my words in a single picture. It is a true gift.
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The book is finally here You can now have me in your house
Hi everybody
I am super excited to announce that my book is finally available. It’s Called From a seated perspective. Is available RIGHT HERE. This has been a long time coming. Some of you have literally been waiting YEARS and I think the wait will have been worth it. After you buy a copy: do me a favor and please write a review. I want to get the word out to as many people as possible.
As with almost everything I do on the Internet these days, This book wouldn’t have gotten done without the help of Evie. She did more than you guys will ever know to make it easier for me to write and did some amazing art that makes me smile every time I see it. I am a published author largely because of her. I’m not always the easiest guy to work with, so her perseverance means more to me then I have words to express.
I also want to thank my buddy Tommy, who did the final edit. He quite literally tore the book apart. We’ve been friends for more than a decade, and he is always around to back me up. It is very much appreciated. Thank you, sir.
I truly hope you guys enjoy the book. If it sells well I might be convinced to do another one. So what are you waiting for? GO GET IT
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Now I understand how Elmer Fudd felt
Like everybody else, I have to shave. I’ve tried to wear a beard because well, it would just be easier. I always make it a few weeks and the itching starts to drive me more than a little insane. Most days I shave using an electric razor with Jane’s help. About once a week a little more help is required. There’s only so much an electric shaver can do.
In my case, my hands aren’t steady so I just have to sit back and let someone else do the work. Sometimes I go to a barber, but most of the time I get help for my dad. Whoever is helping me I try really hard not to make them angry before I need a shave because my life is quite literally in their hands.
Maybe I’m vain, but I’m not a huge fan of scars. Jane is afraid to help me with a razor for that exact reason, she does not want to be responsible. I guess we are getting to the point that I will soon have the option of a robot assistant, that sounds great in theory until they see me as a threat to their survival:-)
Thanks to Evie as always. Her work makes me laugh at myself and that’s pretty amazing.
Have a great Friday everybody
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The power of levitation would come in really handy sometimes
No matter how Vigilant you are, technology tends to break down and when it does, I realize how much I rely on it. It gets me out of bed, into the bathroom, the shower. Basically anytime I’m outside the chair a lift probably got me there. When I don’t have that technology it’s hard for me to move and puts a strain on people who don’t need to be lifting a fully grown man.
Unfortunately, you can’t just go to Amazon and pick up new hardware. I’ve had one lift in the shop for at least 6 months, and the other one is threatening to die. It will all work out, it always does but I wonder where one would go to hire a Swedish nurse in the meantime? As always, thanks to Evie for working her magic.
Happy Monday Everybody
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Tow trucks are not wheelchair accessible
It’s never fun to have a car break down, especially while you’re on vacation. That happened to me a few years ago. Doesn’t matter where you are, you can probably find some place to get your car worked on. That’s the major benefit of having a Walmart every 5 miles across the United States. If you’re in a wheelchair and your car braids down in a small town with little or no public transportation or any kind of accessible transportation for that matter, you are kind of stuck.
When this happened to me, it was interesting to see the look on the tow truck drivers face when my dad told him that the electric wheelchair did not fold up and I couldn’t just hop in the front of the truck. So for the first time in my life. I rode in my vehicle, as it was sitting on the back of a tow truck. I’m pretty sure this is highly illegal. but there were no other options in small town Oklahoma. The looks that we got from people as they passed the truck on the highway and realised that there were people actually riding in the vehicle on the back was priceless. I felt A little bit like an exhibit On Ripley’s believe it or not.
It’s definitely not something you see every day, but when accessible transportation is not available, you have to get creative. I’m pretty sure the tow truck driver will never forget me.
As always, I want to say thank you to Evie for actually believing me when I tell her all these crazy stories. Have a great week everybody.
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