Category Archives: Life in a wheelchair

Just because I can go barefoot everywhere it doesn’t mean I should

jj-noshoes As I sit here writing this I’m not wearing any shoes. Mainly because it feels good. I work from home so I can get away with that. It occurred to me the other day that because I’m in a wheelchair I really don’t have to wear shoes anywhere. Think about it. My feet never touch the floor so I don’t have to worry about germs or stickiness or walking barefoot on a painful surface like gravel.

At first blush this seems like a major perk of being a guy in wheelchair. The thing is, I’ve only done it once or twice that I can remember on purpose. The reason is simple I hate to admit it but I am fairly vain for a guy, The idea of being out in public with no shoes, and being seen by people who I would like to make a favorable impression on  is kind of terrifying. When I go out in public I’m always shocked at what people are willing to wear when they leave the house to go out into the world. You can’t go to a Walmart anywhere in the United States without seeing at least a few people that look like they just rolled out of bed. Wearing pajamas, messed up hair the whole nine. Sometimes I see someone like this and I wonder if they even bother to brush their teeth before they left the house. If you are one of these people I salute you. it takes real guts to be comfortable all the time and just not care how people are looking at you.

Knowing that these people are out there tells me that no one would look twice at me if I wasn’t wearing shoes but for some reason I have a mental hurdle about it. Every time I leave the house I think somewhere in the back of my mind that I may meet someone and be asked to become a model or the world’s next media darling. If this happens, I need to look good and not like I just rolled out of bed. Plus I figure my feet can’t really be that appealing to look at. I think I would constantly be paranoid that I missed some toe jam the last time I took a shower.

I never really understood the sign at some businesses that says “No shoes no shirt no service. Sometimes I see people wearing shirts with so many holes in them that the shirt might as well not be there , and the only person in danger of having a major hygiene issue is the person who is walking around on a dirty restaurant floor with no shoes. I  wonder what what happened if somebody walked into a business that displayed that sign wearing shoes and a shirt but no pants? I think pants would be absolutely necessary. No one needs to see that.

I can’t explain why I think about these things but if I’m going to think about these things, why not share them with you right? 🙂 as always thanks to Evie for bringing life to all the weirdness in my brain.

Have a great week everybody.

 

I have no idea how you people shower standing up

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As has been mentioned several times, I need lots of help, Even in the shower. When I was younger and my parents could pick me up they would give may baths. As any adult knows however a bathtub can be sometimes hard to get out of, especially if you have to lift someone out of it. After about the age of 15 a bath no longer became an option for me because I was just too heavy to lift out.

I am constantly amazed at how Evie’s mind seems to understand exactly how my situation works. What you see above is exactly what I sit in when I shower. (I don’t have a cat swinging from the curtain but I guess that could be in my future). The chair is on wheels and I transfer from my wheelchair to the shower chair, and it rolls directly into the shower. I tend to use a wand that I can hold to rinse myself and ask for help when I need it, for things like washing my hair.

My shower experience varies wildly depending on who is helping me. If it’s my dad, we don’t use much water because he’s trying to get me clean without much  mess so he will turn the water on as needed and then turn it off while I’m using a washcloth. This is not the most pleasant way to take a shower but it gets the job done, and he can go on about his business after wards without being soaked. If Jane is helping me it’s a completely different story. Much like most of you, a shower does wonders for my perpetually sore body, I take my time and use the water to relax some perpetually sore muscles. You would be amazed at the difference it makes to the way I feel.

I went through a phase in my life when I was younger and could still use the bathtub where I really enjoyed soaking. I think most of the joy came from the fact that for that 30 or 45 minutes that I was in there, I had to complete privacy. Complete privacy is a rare thing in almost every aspect of my life. Anyone who is in a wheelchair understands that this is a trade-off that has to be made to get the help you need, but I’m sure my mom found it strange that a teenager wanted to soak in the bathtub. It’s something that I miss these days. Especially when I’m having a particularly rough day physically. I do have some privacy in the shower. Jane is very good about giving me my space, but it’s not quite the same as soaking in the bath tub for 30 minutes.

Before Jane came along, I was able to shower about three times a week. The reason for this is that taking a shower every day the way most people do is a a lot of work for someone else to help me. Since jane’s arrival I’m able to shower whenever I see fit.

Why am I telling you all of this you ask? The reason is simple. I started this blog to allow anyone who read it, to get a glimpse of what my life is like. Simple things that most people take for granted every day, are a little more complicated for a man on wheels. I’m not complaining, it’s just a fact. Complications or not. I still get things done. Pro tip we are all more pleasant be around when we shower regularly. It may take more work for me to get it done but I’m pretty sure the people around me are thankful that I make the effort. To those of you with cats, I wonder if other handicapped people have cats who play at being Superman with the lift harness? I don’t blame her, but one day I might actually get stuck in there. Have a great week everybody.

As always thanks to Evie for another wonderful cartoon.

Can I get a sports talk radio show please?

This is one of those days that I wish I was still on the radio on a regular basis and could sit in on a sports talkshow. I thought about doing a blog or a YouTube video. Then I thought maybe I’ll try Facebook live and realized that only works from your phone and I would be lucky if more than one person saw it so I’m going to post here.
I have no art or pretty pictures for this one because it completely unplanned, so here we go
 
I love sports, especially basketball. Michael Jordan got me started and I have been hooked ever since. Lots of people would call me a bandwagoner because I’m not a diehard fan of one team. I love great teams. I watched the Bulls for six championships, the Lakers for 5. Boston’s big three of Paul Pierce, Ray Allen, and Kevin Garnet, and the Spurs. As a kid who has never been able to play, watching greatness gives me almost as much joy.
 
The last couple years I’ve been watching the Golden State Warriors. I love them because much like the other teams that I mentioned above, it’s about team basketball and it’s beautiful to watch.
 
If you’ve been paying attention to sports at all in the last couple weeks, you know that there is a ton of controversy about Kevin Durrant going to the Warriors.
 
All of this controversy kind of confuses me. I thought the the point of free agency was to allow a player to go where they wanted? As far as I know, Durrant made his choice completely within the rules of free agency. That said, everybody is talking about this move. Even the commissioner of the League saying it’s not ideal for the NBA as a product.
 
Here is my issue. if the Warriors organization, specifically the GM were able to convince Kevin to come there and it was done within the rules, I don’t really understand what all the fuss is about. When you have the commissioner of a sports League coming out and saying that a move isn’t good for business, and players current and former coming out to criticize someone they work with, that just doesn’t seem right to me. The same thing happened when Lebron went to Miami, and the world didn’t come to an end. It’s not like it’s a 10 year deal or anything. The guy exercised a right to choose his workplace for the next couple of years. What’s the big deal? It looks good on paper certainly, but so did adding Gary Payton and Karl Malone to the Lakers and that didn’t work. The Warriors gave up a lot of their bench to make this happen. That could really hurt them.
 
I heard somebody on ESPN today talking about the fact that the collective-bargaining agreement might need to be adjusted. That just seems crazy to me. Dude chose where he wanted to work for a couple of years, and the rest of the league will have to figure out how to compete.
I know most of you don’t care about sports. I just wanted to throw in my $.02 I would really love to be on talk radio just saying.

Sometimes gamers just need a little help

This content is not original with me, but is the reason Evie and I launched this blog. It’s all about wheelchair enlightenment. I love videogames, they are  my preferred form of entertainment follow this link and enjoy. What you see literally made my day. 

Happy Monday

Sometimes I really need my own pit crew

jj-service

I mention quite often that these comics are true to life. I have in fact lost a wheel and I have had to wait to get repairs done. Sometimes this means pulling out an old chair that is way too small for me, to use  while I wait. Sometimes it means having someone come to my house because I have no choice. There’re actually people who specialize in working on wheelchairs. I never saw a degree plan for wheelchair mechanic when I was in school, but they do exist, and they are absolutely necessary.  The crazy thing about wheelchairs is that you can’t buy the parts off the shelf.  Like every thing that is related to medical, parts are crazy expensive. You can buy a  nice used car for what a basic motorized wheelchair costs. You would think I could at least get a seat warmer, or  some fuzzy dice  on an $8000  wheelchair. If I ever get my bionic legs I may actually be the $6 million Man. Do you guys think I’m cool enough to get a wheelchair endorsement deal? If Shaquille O’Neal can sell icy hot, I think I’m good-looking enough to represent a wheelchair company. I wonder if THAT would get me a seat warmer?

 

Lucky for me, I have someone around who can fix almost anything, Thanks again to Evie (a.k.a. MacGyver girl) for making me smile once again this week.

Have a great week folks

 

 

It’s a good thing I’m not high maintenance

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Relying on people is just part of being in wheelchair. I’m very independent but there are just things I can’t do. I’m constantly learning new things everyday to help myself but I fear I will always need help. As long as that’s the case I will have to be patient with other people. I’ve never had to get my mom out of bed for help, my brother is a different story. He is  really hard to wake up. He is also extraordinarily busy. It doesn’t happen often anymore, but when he helps me out, I am very well taken care of but I have to be flexible and work around his schedule. Jane is employed by me, but even she is completely unavailable for three days out of the month. I’m not complaining it’s just a fact. My mother is always around, but is constantly working on something so I may not have the opportunity to go to the restroom the second of the urge hits me. Especially if my family has gone out for something.

I learned very early on that I needed to be careful about what I consumed every day especially if I was going to be on my own for a few hours on a given day. If I know I’m going to be alone from 6 to 10 on a Friday night, I’m very careful about what I drink during that time frame so I’m not dying to use the restroom if they come in 20 or 30 minutes late.

Same with food. I have started keeping snacks where I can reach them in case I get hungry, but if I want a meal I need to make sure I eat when other people are eating. It doesn’t go over well, when you come out after the food has been put away and everyone else is ready to relax. (yes I have done that more than I care to admit). I  normally go to bed around the time that everyone else in my house goes. That’s really inconvenient for me, but it’s also not right for me to keep someone else up because I am not ready to sleep. It gets frustrating yes, but as long as I need help getting in bed, it’s a concession I have to be willing to make.

I also have to be gracious about it. This is something that I struggle with because I am an adult and it’s hard not to feel that I deserve more flexibility in my life. However, I have to remember that the person asking if I can go to bed, (usually my dad) cannot be expected to revolve around me. I’m very lucky that there’s usually someone  available to talk to, even if I’m in bed( Evie and I usually have at least a text conversation every night about something).

I have to be patient and accommodating whether I want to be or not because the people who help me, their needs, are just as important as mine.

Patience seems to be in very short supply in today’s world.I think I’m a better man because I’ve had to learn it just to be able to function. I don’t get exactly what I want, the second I want it, all the time. My needs are met and learning to be patient with other people has made me a better person.

Are there areas in your life that you need to learn patience, especially with other people? Leave us a comment and let us know.

As always big thanks to Evie for all that you do for me.

My ego gets big and then I remember I can’t tie my own shoes

jj-humble

I have never lacked self-confidence. I have spent more hours in my life making plans to be great then I care to admit. World class speaker, a comedian who can fill a stadium, Rock star. You name it, I’ve probably dreamed it. I often think that God gave me cerebral palsy because it was the only way he could thing to keep me in check. If I were able I will be unstoppable. I have a dream everyday, but I also have some unpredictable side effect of cerebral palsy to keep me on earth. Muscle spasms, physical inadequacies or challenges are always there and they don’t play nice.

There’s nothing more humbling in life then realizing you need someone’s help to get to the restroom. It’s a constant reminder that maybe I’m not such a big deal.

I’m not writing this post didn’t complain about all of my issues. I actually think to make the most out of life, you have to be humble. My mom used to say when I was younger, that is my head were any bigger, I would have trouble getting through a door, she doesn’t say things like that much anymore. I think most of the things that keep me humble now, were not issues for me when I was 20. I’ve also gotten smarter and learned to listen to the good people in my life more often. Sometimes I’ll listen and decide to do things my own way anyway, but being humble enough and willing to listen gives me more options and potential for less mistakes. I don’t know about you guys, but I’m old enough now to know the fewer mistakes I can make the better. Having cerebral palsy always reminds me that the most important thing in life is people because I will always need them to survive. I get frustrated often because I need so much help, but I hope in the long run that being humble, and having respect in everything that I do, will lead to a full and prosperous life that I can be proud of when it’s over.

What keeps you humble in your life?

Thanks to Evie for helping me to do so much everyday, including today’s comic.

Not being able to stand occasionally has its perks

jj-crowda

If it is not obvious by now, I don’t stand a lot. If I do, it’s only with major assistance and it usually hurts. It’s always interesting to go to a church service or some other event where people are asked to either stand or go to their knees and pray. I can’t do either, if I ever got down on my knees it would literally take a crane to pick me up. When I am in an event like that, it’s the ultimate “look it me” moment, when every other person in the building is asked to stand. I am not opposed to look at me moments, I have this blog after all. That said, I often wonder what other people are thinking as they stand around me. If it’s a church service or graduation I imagine people think “man I would love to be him, how many more times are they going to ask us to stand?” At something like a rock concert the situation is similar to what you see in the comic. Most people just don’t care. Mostly because they are completely unaware that I’m sitting behind them. I can’t complain too much because I have had bad seats before and been pushed up to the front row because someone saw I was getting robbed, or at least perceived the situation that way. I’ve never had a cat standing on my head but I have been at a music event where I could see absolutely nothing. Then when I made it to the front row, I realized I hadn’t missed much.

I’m probably getting old, but front row is a really bad place to be at a concert, I loved it when I was a kid, but as I age I value my hearing. I think that’s mostly because I live with my dad who can’t hear anything and doesn’t realize it, I don’t want to be that. As I have gotten older I have learned to get the best available accessible seats, even if they are  a few bucks more. I would like to have great seats at a Dave Matthews band concert. It’s fun to watch those guys play, I’ve been twice and wasn’t close enough either time to even begin to see their faces. I also have to give them credit, both of their shows that I have seen were played outdoors and at a very reasonable volume.

As for getting down on my knees in a church service, I truly believe that God has a sense of humor. It has to be pretty funny to see you almost people on their knees or standing multiple times for long periods, and then there’s this kid just sitting there enjoying his seat having a peaceful enjoyable service. That’s irony folks.

 

Be honest. Have you ever considered renting a wheelchair for an event that you knew you would have to stand for a while? I will gladly rent mine out for the very reasonable rate of $150 an hour. Wheelchairs ain’t cheap folks. Your feet will thank you later.

Thanks again to Evie for showing so accurately exactly what it’s like to be me.

You call this accessible?

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I am a fairly easy going guy. I don’t really complain about the lack of ramps or parking when I’m out and about. The way I think about it is that it’s not really that hard on me if I don’t have front row parking and a ramp that is blatantly obvious. My mom gets very upset when someone parks in front of a ramp. My response is usually “I’m pretty sure there’s another one, don’t worry” I try to get into that person’s shoes who is parked in front of the ramp. Every time I do, I come away with the same conclusion. Put very simply, if I wasn’t in a wheelchair or around somebody everyday who was, I would probably do the same thing. Occasionally there is not another ramp and those people are always very kind when I ask them to move. Probably because they are more than a little embarrassed. The area of accessibility that I struggle with as restrooms. It doesn’t matter if it’s a restaurant or a hotel chain, everyone has a different idea what makes a restroom accessible. I have stayed in nice hotels before where the restroom door was too small to get my chair into and the room was classified as “accessible.” If I can somehow find a way to  get into the restroom there was a metal bar next to the toilet that I could hold onto. This is some people’s idea of making a restroom “accessible.” On the other hand, I have stayed in cheap hotels where the restroom door was big enough to drive a truck through and the restroom was almost as big as my actual hotel room.

I hear you saying to yourself “why doesn’t he keep track of hotels with the accessibility he needs and just stay there all the time, no matter where he goes? The answer, because every single hotel from city to city is radically different when it comes to accessibility. I can stay at comfort Inn in Oklahoma City, with a fabulous bathroom, roll in shower and the whole nine yards. If I go to Dallas and stay at a Comfort Inn the restroom might have all the same stuff but in a room the size of a shoebox, with a 26 inch door that my chair can’t roll through. Put very simply, you never know what you’re going to get.

I talk to people all of the time and when this issue comes up I often hear “it has to be accessible right?” The American’s with disabilities act has to be followed. Well, technically that maybe true, but I think there is a lot wiggle room as to what is accessible according to the ADA, at least this is what I found in my experience. Anyone who has ever broken their leg or had any injury where  they were confined to a chair for a short time, probably knows exactly what I’m talking about. I hear “man I had no idea” quite often. I think the reason accessibility is so subjective is because the people putting in accessible doors and ramps are able-bodied people who may not necessarily take things like arm strength, into consideration. They may think if a door is easy for them to open it must be easy for everyone.

I understand that it’s complicated because wheelchairs come in all different shapes and sizes. You can’t account for everything. That said, I’m pretty sure every wheelchair ever made will fit through 36 inch door. I’ve often thought since I got out of college that I shouldn’t really need to find a job because I would be the ultimate accessibility test, and I should get paid to consult with companies all over the world. Maybe that’s just a dream, but I think it would be fun.

What’s the worst example of accessibility you have ever seen?

Thanks to Evie for giving me another great comic to work with. I often wonder if this situation came up and she was with me, what her plan B might be?

Would you like some fun with that?

jj-drivethrough

When I was in college and on the radio in the mornings, I actually went through a McDonald’s drive-through in my wheelchair. One of cohosts on the show actually walked beside me to see the whole thing unfold, while talking to the listeners on a cell phone. That was maybe the most fun I ever had on the morning show.

The McDonald’s employees weren’t happy with me. I actually think I might have been banned from there for about six months. I had a car, it was just parked down the block. We just wanted to see what what happened. No real reason for doing it other than the fact that it was entertaining. So what’s my point with this post? Have fun, put yourself out there and see what happens. This was not the only crazy thing I did on the radio. I dressed up as Cupid for Valentine’s Day one year(that’s a whole other story) my reason for doing all that was because it was fun. My cohosts and my bosses were initially worried that I might be offended by putting myself in those types of situations where my wheelchair was the focus. I wasn’t. I had a blast and I would do it all again. I haven’t had nearly as much fun since I got out of school. I have several really enjoyable projects on the horizon that I will tell you about later, that may remedy that situation. Life is what you make it stand out and enjoy it.

What’s the craziest thing you have ever done just for fun?

Evie doesn’t even blink when I tell her the stories anymore. I think she’s becoming desensitized to my nuttiness. Best Vice president ever. Did I mention that she has a new website? Go check it out.