Category Archives: Life in a wheelchair

Independence sometimes needs some chewing gum a paperclip and duct tape

I wonder what he would charge me to consult
I wonder what he would charge me to consult?

 

I was born with cerebral palsy I’ve been in the chair for as long as I can remember. I’ve needed help every day since that day I was born. Independence is something that has come little by little. I went to college and found a way to get it done, with lots of help from others of course, but I got it done.

I spent years looking for a personal assistant. Maybe closer to a decade. Last October, I got Jane. Having her has been a major adjustment. I can finally get out and go,(not whenever I want to but almost.) I have someone to stay with me. Which allows my parents to have much more of a life of their own. I’m learning to the shop for groceries, and now I’m learning what it’s like to be able to make my own choices. It’s an amazing thing really.

All that said, I still live in my parents house. It has a few things that are built just for me, like a big bathroom and sink I can roll under. For the most part however, it’s their house. Appliances are located in convenient places for them. Which in most cases means they are too high for me to reach. This is okay for most things, a guy with very limited motor skills, probably shouldn’t be attempting to cook a meal on the stove. That said, having the ability to microwave a snack when I got hungry and no one else was around, would be nice.

Over the last year, I have been extremely fortunate to have an independent minded woman pointing these things out of me. She’s constantly thinking of ways I can improve my situation. A major addition to my living environment would be a microwave. When I started thinking about it, all of these wrinkles begin to happen. A microwave is great but only if I have access to food to put in it. That means I’ll probably need a freezer somewhere in my room as well. My room is nice but it’s very limited in terms of space and I don’t even have that much stuff.

So I am looking around  trying to figure out where I could put a freezer and a microwave that would be accessible to me. Then I start thinking about how I could get the food from the freezer to the microwave and out of the microwave without making a huge mess in very limited space, that someone else might have to cleanup. All of these thoughts have me wondering if there is a reality show out there that specifically designs spaces for people like me, to help us become more independent? If there’s not there should be. There’s one out there for everything else. (there is one about building custom epic tree houses, those guys are insane).

My point with this post, is that in my case becoming independent has happened by baby steps. it’s painfully slow, And in the case of the microwave and freezer, trying to figure out how to make it work, in a place that’s not really designed for it, is a daunting task. I know it  will happen for me. Sometimes it feels like I will need a team of MacGyver’s to make it happen. (that’s want a mile time favorite shows, just an FYI.) Has anybody out there ever attempted what I am talking about, and do you have blueprints?  Comments welcome. Independence is worth it, but I don’t think it ever comes easy.

Comments are welcome

Image can be found here

Smart pills you say? Yes please

What I could do with this pill
What I could do with this pill

 

I love all of of the types of entertainment. Being a kid in a wheelchair growing up, I watched a lot of TV and played lots of video games. I read a lot also. I couldn’t play sports like most kids, so these were things that kept me busy.

As I have gotten older, I still read a lot and play video games more than most people but not like I used to. I hardly ever watch TV unless it’s a very specific show like The Black List. I’ve watched a lot of the new shows this year and I must say, they are really good. I love BlindSpot, The Grinder and a few other ones. The one that has  really caught my eye however is Limitless

The reason is simple the story seems to take place only a few months after the events of the movie and the main character of the movie is a major player on the TV show.

That’s something that I’ve never seen before it’s an amazing way to continue the story and bring people in who love the movie. My whole life I’ve had people tell me that I could be a rocket scientist if I applied myself. I consider myself to be smart but not that smart. Human beings only use 10% of our brain. The idea of a pill that would allow someone to use their whole brain is really intriguing to me.

I’ve often wondered what  opportunities in my life I have missed to give myself a better life, because I just wasn’t smart enough to see it. I have had several family members and other people tell me I should dabble in stocks because I have the time to do the research.

The idea kind of terrifies me. I don’t feel like I’m smart enough to see the trends. I’ve wondered how many opportunities I’ve missed with women because I wasn’t observant enough to see them in front of me.

I’ve never really been tempted to try and illegal drug, but if there was no one out there that  could make me smarter, that would be hard for me to resist. I highly recommend that you watch the movie and check out the TV show. It has been time well spent for me.

Is anybody else wondering how much time the lead actress on       Blindspot spends in make up to put on and remove those tattoos for every show? 

I’m just saying

Image can be found Here

I got nothing so I’ll just ramble

It just looks like I know what I'm talking about
It just looks like I know what I’m talking about

 

 

I can’t decide what to write about today. I’ve got nothing really inspirational and I’m not feeling that funny, so I’ll leave you with a couple of observations.

 

Observation one

Fred Savage might be ageless

I watched a couple of episodes of that new show on Fox called The Grinder.  it’s got our friend Fred and Rob Lowe, I’ve seen two episodes and I think is really interesting, mainly because I believe Fred looks the same as he did like 30 years ago, right down to the Voice. His voice is exactly the same as when he was playing a teenager on The Wonder years.(That show was great, don’t even get me started), Like half way through my second episode last night, I kept expecting Connor McCloud to show up with a sword and try to take him on  (who’s old enough to get that reference…. Anybody?)

Observation two

How is it winter already?

It’s October for crying out loud. I have no idea how we got here. One minute I’m trying to figure out how to get a tan quickly so I can wear shorts without blinding the unsuspecting public, the next I’m trying to find pajama pants because I’m cold(I’m wearing them now actually, and they are great)

I don’t know if I’ve ever mentioned it on this blog but I get cold very easily. It probably has something to do with sitting all the time and having bad circulation. Unless it 85 outside, I am probably cold, I’ve never had a girlfriend in the winter. I’m thinking that’s probably good because I would want to snuggle all the time. I’m wearing pajama pants at 6:30 in the evening. I feel like a really old man.  I was at a indoor volleyball game the other day, and I saw an older man in wheelchair wearing a blanket almost up to his chest. . To each their own, he might have been sick, I have no way of knowing, but I hope the only way you ever see me with a blanket in public is if I’m wearing it like a cape. Just saying.

See, this is what happens when I have nothing inspiring to say. I just get random.

Happy Wednesday folks

 

Image can be found here

Walking seems like really hard work

I’ve been in a wheelchair all my life and I have to admit something, I have never really wanted to walk. I can’t think of a ton of things that I would love to do if I could walk, dancing Sports, Rock climbing, the list goes on. The act of walking however has never actually appealed to me.

That’s probably because every time I have ever done it with the aid of technology it has hurt really badly.

Jokes aside, walking  just to walk, has never made sense to me.  I have no idea why all of you” normal”  people don’t ride around on segues everywhere you go. I’m all for exercise, but walking or running just seem like a massive waste of energy. I don’t understand the stationary bikes or treadmills either, if I’m going to put in that much effort I better going somewhere, just saying. Somebody out there who likes to walk, tell me what I’m missing. Is it one of those don’t knock it until you’ve tried it kind of things?

Someone is always watching put your game face on

Maybe without the crazy eyes
Maybe without the crazy eyes

 

I spent the better part of the day at doctors office. I have gone to the same doctor for the better part of 20 years. Recently I decided it was time for a change. There was nothing wrong with the doctor I had, it just sort of seemed like he was going through the motions. Trying to get people in and out as fast as possible.

I don’t know about you guys but when I don’t feel well, or have a problem serious enough to seek out a doctor, I don’t like to be rushed, and I don’t like to be treated like a number. First visits to a new doctor are always a pain. I showed up a half hour early, because I knew there would be paperwork, and there was, lots of it. I spent over a half-hour filling out forms, (well Jane did but I had to answer her questions). Then when I was done, I had to wait 20 more minutes just to go back to the little room. Then once I got there, I waited another half hour.

At this point, I’ll freely admit to being a little frustrated. However, I was also intrigued. I could hear the nurses outside the door laughing and joking and even having fun with other patients. Something different was going on here.

Finally the doctor came in. He shook my hand(that’s kind of a big deal. If someone doesn’t know me, they don’t usually even attempt it.) Then, he sat down, and begin to talk me about my situation. We talked about other specialists who might be of help to me, and treatments to improve the quality of my life. This lasted about 20 minutes.

I’ve had a few doctors in my time. I’m not sure that I’ve ever had one ask how he could be of service to me. At one point he said “I’m really looking forward to working for you”

This brings me to the reason I am writing this post. I delt with a man today, who  obviously takes pride in his job, and wants to be of service to his patients.  That’s rare in today’s world.  when you see it, it’s very refreshing. By the end of the visit I didn’t even care that I had spent more than two hours in there.  His good attitude changed mine.

It reminded me that whatever I do, I need to do it with a smile, not only s smile, but genuine enthusiasm. You probably aren’t going to always like what you do, but if you do it like it matters, people will notice and doors will open. I certainly noticed today.

 

Image can be found here

When in doubt go all out

Truth
Truth

 

Life is too short for regrets. I have exactly 3 in my 36 years of life. Two of them I had no control over and could do nothing to change the outcome.

The third has to do with going from a manual wheelchair to a power chair when I started high school. If I were still in a manual chair today, I would be in so much better shape and there’s no telling what I could have done physically. At the time my parents were afraid I wouldn’t be able to get to my classes on time, and consequently pushed me to make the change. As a lazy 14 year old kid, all I knew  was that this would allow me to be even more lazy. I had no idea what the consequences would be, and even if I had, I probably wouldn’t have cared. I care now. Every time I see one of those extreme sports wheelchair guys I think” I could have been that”

Anyone that knows me, especially women, will tell you I speak my mind. I’ll say I love you often and I’m not afraid to be softhearted, because I don’t ever want to regret something I didn’t say. One woman in particular, (I’ll freely admit I’m very sweet on her.) For you young kids out there,that means I’m WAY into her) calls me  mushy” man. “she says I get” a sound” in my voice when I talk to her.

I never apologize for that. Life is too short to hold back.  In everything that you do, go all out. You’ll probably have to step out of your comfort zone, and you may get hurt, but at least you won’t regret what you didn’t do.

 

The image can be found right here

Broadcasting on wheels

I have a face for radio

 

Seems like they are talking hand everywhere you turn. There are shows of every type. Dr. Phil Dr. Laura, news shows, shows about money, politics, whatever you like to consume. Maybe I’m egotistical but I’ve always wanted to have one of those shows. I’ve always wanted a show that was a nationwide, that took on things from a handicap perspective.

I’d have a different gas every week. A doctor or nurse to talk about different medical issues. People with different disabilities to talk about the struggles they face. A a caregiver to talk about the different issues that arise when taking care of a person with a disability.

I really love the idea of people listening, and calling in to talk to me or our different guests. The podcasts, and videos that I do are fun but there’s nothing like a live broadcast. i’ve loved live broadcasts since my first day on the air at West Texas A&M University. You can read more about that here and here.

Being on the air is probably the thing I do best. That said, I have two questions for you dear reader first, would you watch or listen to a show like that? I was thinking about it today, and I could be wrong but I don’t know of any disabled news anchors or talk show hosts out there. I’m probably wrong about that. If I am please send me a link because I’ll be interested to see that. I guess I’m thinking that if these guys who do three hours a day on radio can do it, so can I That brings me to my next question.

Do you know anyone might be in position to help me make this thing happen? The old saying, it’s not what you know, it’s who you know,  Is absolutely true in the broadcasting business I know some people but I don’t know anyone is willing to put me on the air. I can see why suppose. I’ve talked many times on this blog about the fact that we live in a politically correct world. I can see how  a very loud very opinionated guy in a wheelchair could be very scary to a  station owner or manager. (it’s only a wheelchair, it’s not like I have spikes on my wheels or something),

I truly believe if given a chance, I can turn the world of education and entertainment upside down. If you know somebody or are would like to talk to me about this send me an email send me an email jamie@jamiejordan.net

If you’d like to help out another way share this blog with your friends whenever you can. I’m really trying to get it out there to people. I truly believe I can make a difference. The bigger  the platform I have, the bigger the difference I can make. That said I’ve been around enough to know I can’t do anything without your help. If you weren’t here reading this, or listening to my podcasts, or watching my YouTube, there would be no reason to do any of it. You are my greatest ally, and I’m grateful that you pay attention. I know I can change the world, but not without you.

Technology has changed everything for disabled people

I spend a lot of my time in front of a computer. The first thing I do every morning is turn on the computer, check my email, and all that kind of stuff. My family used to think that I did these things because I enjoyed it, but the truth is that a guy like me who has a handicap sometimes only has contact with the outside world through the computer. If life could facilitate me to go out and do more public speaking and motivational meetings, but having access to a computer allows me to do some sort of work throughout my day, even though I can’t always spend the time and money to get out of the house.

If I were born 10 to 20 years earlier, I would have a whole different life. The money that I make is because of the internet. When you can’t travel easily, the internet is there to provide work-from-home situations that weren’t available in the 80’s. If it weren’t for computers, my entire day would be much different. That said, I am old enough to know what life was like before the internet. There was a time when people didn’t carry their whole lives on their cell phones, and you couldn’t have access to every piece of information you wanted whenever you wanted it. I do remember those times.

I have no idea what the vision of the future is for kids that are growing up with a special need now, but I’m sure it’s a better situation than what we went through in the 1980’s because of the seemingly limitless opportunity that technology has provided. What are some of these opportunities? The opportunity to connect with other kids is invaluable. The ability to look up details about your specific health problems (particularly for teenagers) is very helpful. Kids that can’t speak can sometimes communicate through iPads, which is not only a great resource, it’s something that is completely common among their generation and doesn’t carry the stigma that some of the devices created for people with special needs have in the past. One of the great things about technology for kids that are old enough to use it is the opportunity to discover what they are passionate about, to find what their special talents are, or what drives and motivates most. I’m still waiting on bionic legs. The six Million Dollar Man and the Bionic Woman were on the air almost 30 years ago. How does that stuff not exist yet? (Update) apparently it does exist for one special kid. This is a pure awesome


 

I also have to say Lindsay Wagner was hot. If you’re not old enough to know who I’m talking about, look it up.  I always wondered how her hair stayed in place after running so fast? Yeah….I need to get a life.

To read the entire story you can check it out right here 

It’s a small world but it’s not THAT small

 

I've met some people who have probably inspired this cartoon
I’ve met some people who have probably inspired this cartoon

People seem to think that all handicapped people know each other. When people meet me, I often get something like, “Hey, do you know so-and-so? They also have Cerebral Palsy.”… “Oh, no?” Then they make this face like it’s very unusual that I haven’t met this person. If there are handicapped persons conventions or parties, I haven’t been invited to them. We don’t all know each other. Which leads me to the next interesting bit…if there is a girl that they know that’s handicapped, they think that we should be hooked up. Think about this for a second. You’ve found a guy that doesn’t drive, with bad vision and a girl that also doesn’t drive, who also has her own issues that he cannot help with. Can you imagine two people with the same problems living in the same house? This is like people without arms marrying other people without arms. It would make much more sense to find someone without feet. Or at least with one hand.

Logically, this is why I’ve been drawn to able bodied women. This may sound chauvinistic, but I need a woman that can take care of me. I don’t mean full time. If I’m ever going to have a successful relationship, she needs to be able to focus on being my girl, not my caregiver. Realistically, I imagine the caregiver will be in the background somewhere and there if we need them. Having someone who can reach a shelf and has good motor skills, 2 things I don’t have, is a big deal. Basically it boils down to the idea that I want someone different for me. I can do things for her too, but probably not highly physical things.

I joke around a lot about a woman who is with me getting handicapped parking, or never having to stand in line because they would always have my lap to sit in, but in all seriousness, being with me has more than a few perks.

When it comes right down to it, people assume  a lot. I’ve heard jokes that white people assume African Americans or Mexicans all know each other, and should get together. That’s  what it feels like. Basic rule of thumb when dealing with any other human being, never assume anything  it will serve you well.

 

Image can be found Here