On the Road Again

If you have followed this blog for a while you know that I ride a hand-powered trike. It is something that I enjoy quite a bit. However, I’ve not been out for a while, as I have had some back pain. The problems with my back have greatly limited my mobility over the past few months.

Fortunately, I am beginning to regain my strength. Today, I went for my first ride since last August, or so the app that I use to track my rides tells me. It is difficult to imagine that it was the end of August last year when I stopped riding. I struggled today to get back into a rhythm. However, muscle memory is a great thing. It was not long before I was gaining back some of my momentum.

It was a short ride today. I did just under 4 miles. Last summer my average ride was about 10-12 miles. It will be a while until I am back up to those distances. I think for now I’ll just focus on building up my endurance. These last few months have not been kind to my body. I’ve not focused on my health in quite some time. Working from home and leading a largely sedentary lifestyle is what led to my back problems, I believe.

I hope today was the start of turning things around and becoming more active. I know my mental health could use a boost. Plus, it is fun to watch all the people stop and just watch as I go by, like I am some being that has landed here from another planet. I am just a guy who pedals his bike with his hands. If you see me out, give me a honk. Although, I may not hear you, as I usually am wearing my headphones. After all, I do have to be on standby in case the Mothership calls me back to our landing site.

Me on my “alien craft”

Dimming of the Day

Amanda and I have been married for seven years. We are also coming up on the seventh year of living in the house we bought shortly after getting married. It is a house that has always been cozy and has always felt like home.

I am unable to do much of the maintenance around the house. For instance, I cannot clean out the gutters, mow the lawn, or shovel snow. These things have always bothered me. I feel like I am less than a man for not being able to do these things.

Our house was built in 1935. It is showing its age, especially on the outside. We’ll need a new roof soon. We could use new siding and new windows as well. Plus, our front porch needs to be be painted and restained. These are things that I worry about a lot. However, I know they will get done. There are many things that need to be renovated inside as well.

Despite all of the work that needs to be done we still love our little house. This old house makes me think of a song that I always tell Amanda is “our song.” The name of the song is “Dimming of the Day.” It was written by a musician by the name of Richard Thompson. However, the version that I refer to as “our song” was done my one of my favorite guitarists, David Gilmour. Below is a video of the song. The words fit perfectly as to how I feel about our house. Most importantly, it speaks to how I feel about Amanda. Please give it a listen.

Amanda would tell you that “our song” is “Silly Love Songs” by Wings. Don’t believe her. I despise that song!

Ticket to Ride

“My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” -Stephen Hawking

When I was younger I never really thought of myself as disabled. I was able to do most of the things any other children my age could do. Moreover, I never spent much time thinking about being disabled and what that meant. I am not sure there really is one true definition of what “disability” actually means. We all have things we do well and things we don’t do so well. I can do things you can’t do. Conversely, you can do things I cannot.

Growing up if there was something that I wanted to do, I usually found a way to do it. I don’t think I ever focused much on my limitations. It is only since I have gotten older that I have begun to see that I do indeed have limits to what I physically can do. For instance, when I go somewhere that requires a lot of walking I will take my wheelchair. When I was younger I never used a wheelchair unless I was in the hospital. It seems like time has caught up with me a little. However, I don’t see this as something that interferes with the things that I want to do. Sure, there are many places that are not very accessible to those who are in wheelchairs, but I am usually stubborn enough to find a way in to those places.

Surprisingly, when I was younger I had a hard time relating to others with disabilities. I think this is because friends and family never treated me as someone who had a disability. Looking back, I think I would have learned more about myself if I had joined groups where I could communicate with other disabled people. I never felt like the world owed me anything, and I still don’t. However, I do feel the like the older I get the more I feel like advocating for others who are disabled.

The world was not made for people like me. For instance, there are very few places where wheelchair users can easily use public transportation. I do believe that access is becoming much better than it once was, especially in larger cities across the world. There is still much work to be done though to level the playing surface for the disabled. One place that I have visited that has made great strides is Washington D.C. Most of the train stations have elevators that go down to the platforms. All of the trains are flush with the platform so wheelchair users can roll directly on and off the trains.

London is another city that seems to be working to make access to public transportation easier for those in wheelchairs. Many of the stations are becoming easier to access for those in wheelchairs. Platforms are being made level with the entryway to train cars. All of the busses have ramps as well, which allows for easy entrance to those on wheels. Progress is being made in other cities as well.

I think as access to various places and events increases for those with disabilities, we will able to regret less the things we cannot do. For, there will be ways in which we can now do them. In the meantime, I hope those with disabilities will focus on the things that we can do.

Finally, if anyone out there is looking for a travel writer, Amanda and I would love to explore the world and report back on the accessibility of the places we visit. Maybe would could start in Australia or New Zealand…

Roger That!

In a few previous posts I have written about my time at Children’s Memorial Hospital in Chicago, Illinois.  It perhaps is a place that I could write dozens of stories about, as there were all kinds of people that I met there as a young boy.  I was exposed to individuals from various ethnicities, religions, and family backgrounds.  Children’s was a place that taught me that we are all people and that we should treat each other with respect.  It also was a place that showed me just how funny life can be. 

As I’ve noted before I was often at Children’s for extended periods of time.  During these stays I had the opportunity to experience things that other children my age would never experience.  For instance, there were times when naval recruits from Great Lakes Naval Station, which is just north of Chicago, would come by and visit patients.  I remember one time a particular recruit came to visit me.  He was a pretty good artist and he made a drawing for me.  This is a picture that I still have stored away somewhere.

When these young sailors would come by for a visit it would make me feel very special because they gave me their full attention.  I felt like I was important to them.  These feelings are something that I will never forget. 

I also had some interesting roommates along the way during my stays at Children’s.  One that often comes to mind when I think of those days is a little girl by the name of Courtney.  She rarely had family come to see her, which always made me feel sorry for her, as it can be terrifying to be in the hospital all alone.  This is especially true for a young child. 

It was around Easter one year when Courtney and I were roommates, and to help her feel better, my mother and father went out and bought her an Easter bonnet and a small purse.  These are two things that I am sure she had never had before.  When she saw them her eyes lit up as if they were the greatest things she had ever seen.  I can remember Courtney calling her parents and telling them about the gifts she had received.  It was heartbreaking to learn that just a few weeks later her brother had gotten jealous of the gifts she had received and proceeded to fill her purse with dirt.  I would like to know what became of Courtney along with some of the other people that I met while I was in the hospital.         

Despite the pain I was often in when I was in the hospital, the nurses and doctors always seemed to make things better.  I think this was because they knew how to treat children who were suffering.  Plus there always seemed to be plenty of things to do to keep one’s mind off of the pain.  For instance, you could make your way up to the ninth floor where there were a few arcade games to play.  Or, there were often magic shows put on by a local magician by the name of Danny Orleans.

Growing up I was a huge fan of Matchbox and Hot Wheels toy cars, and the gift shop at Children’s was always a treasure trove for these.  I can remember several times when I was hospitalized that my parents and I would go to the gift shop where I was allowed to pick out one or two Matchbox cars.  I still have many of these stored away.  They will always bring back great memories.     

Then of course there was the tutor who you went to if you were in the hospital for an extended period.  She was kind of a crotchety old lady who would look over her wire-rimmed glasses at you as she spoke.  You would think having to do school work while hospitalized would have been torture.  The tutor that I had while at Children’s made it all worthwhile though.  I am sure she had been a teacher in the Chicago Public School System since around the time that Al Capone ruled the city.  However, despite her gruff exterior she was actually charming in her own special way.  I think she had a good heart and truly cared for the children with whom she was working.  I just wish her memory had been a little sharper, because she never could get my name correct.  For some reason she always called me Roger, which to this day is one of the nicknames that my family uses for me.  I never really had the heart to correct her.  This woman, I am certain, has long since passed, but the memory of her will live on every time someone calls me Roger.       

Children’s Memorial Hospital in Chicago, Illinois shortly before it was demolished. Just inside those doors on the left were two stone elephant sculptures. I wish I could have gotten one of those before they tore this place down.

I Don’t Want to be Your “Inspiration.”

“The most luxurious possession, the richest treasure anybody has, is his personal dignity” – Jackie Robinson

I understand the sentiment behind the words “you are an inspiration.” I have had many people tell me this throughout my life. I know that oftentimes these words are spoken out of sincerity. I can appreciate this. However, being called an “inspiration” is something that I have not, nor will I ever accept as a compliment. For you see, these words make me feel less than human. Having a physical disability does make me different, however, it does not make me any less human.

These feelings are ones that I have struggled with for a very long time. Many times I have asked God why he created me with a physical disability. There have even been instances where I have been furious with Him for placing me into a body that doesn’t work the way that it should. It is frustrating to deal with these limitations. I can honestly say I still question God as to why He chose me to live a life locked inside a body that is far from perfect.

One answer that He has given me along the way comes from a passage of Scripture. In verse three of the ninth chapter of John, Jesus heals a man that was born blind. His disciples then question Him as to why the man had been born blind. Jesus answers them by saying it was so the “works of God might be displayed” in this man’s life (John 9:3, New International Version). Perhaps, I too was born with a disability so that the works of God could be seen through me. God has blessed me with many things and for that I am thankful. In spite of my challenges I have a good life.

In conclusion, I feel as if people look to me as an inspiration for doing things that come naturally to any able-bodied person. Sure, there are things that are more difficult for me to do, however, I have learned to adapt to my surroundings. I should not be looked upon as an inspiration for doing what what is mundane. People are not given gold medals for taking out the trash, going to work, mowing the lawn, doing the dishes, or shoveling snow. My life is not heroic and I do not expect any accolades for living it. I am just Ryan, an often surly, 41 year old man who appreciates the things that he has been given.

Show and Tell…

“Courage starts with showing up and letting ourselves be seen.” – Brené Brown

Have you ever had that dream? The one where you are at school on the very first day and you are in your underwear? Well, let me tell you about my first day of kindergarten.

Like most kids who are going to school for the first time, I was apprehensive. Would I fit in with the other kids in my class? What would the other kids think about me? Would I make any friends? These were all questions that I had. However, my uneasiness was compounded by the fact that I was going to be showing up to my first day of kindergarten in a full body cast. For you see, I had undergone surgery on my hips shortly before starting school.

This meant that for the first several weeks of kindergarten, I would be confined to an itchy, sweaty, stinky, hunk of plaster. As you can imagine, being in a body cast limited my abilities in several ways. First, I was unable to move around the classroom like everyone else. Second, I was unable to sit down. Therefore, most days I was wedged between a table and a wall so that I would not tip over, as being in a full body cast makes ones body as rigid as a board. Other days I was placed on the floor on my stomach so that I could practice my ABC’s while laying down. I was rarely comfortable no matter what position I was placed in for the day.

Being in a body cast also limited my choice of clothing. Most days I wore a shirt with a towel pinned around my lower half. If only I would have had a kilt to wear! By this point you might be wondering what I did when it was time to use the restroom? Well, fortunately, the cast I was in had a section that had been cut out so that I was able to relieve myself when necessary. Little did I know that this would serve to be both a blessing and a curse on my very first day of kindergarten.

One saving grace throughout this whole ordeal was that my mother was my kindergarten teacher. Therefore, it was a little less embarrassing when it came time to use the the restroom, or when I needed to be moved around the classroom. However, it didn’t make it any easier when other kids would ask my mother questions such as, “why don’t you buy Ryan some decent clothes?” I guess my t-shirt and towel were not fashionable enough. Again, if only someone would have bought me a kilt! I could have possibly started a new trend among kindergarteners of the early 1980’s.

A kilt might also have spared me the embarrassment I experienced on that very first day of kindergarten. Remember that section that I mentioned earlier that had been cut out of the cast? The one that enabled me to relieve myself when necessary? Well, that section had a piece of padding that covered my private parts. This piece of padding was usually stuffed up inside the cast so that it would stay in place, especially once I had the towel wrapped around me. However, on this particular day everything came apart while I was leaning against a table. I also happened to be standing with my back to the rest of my classmates. Needless to say, I had a lot to offer for “show and tell” that very first day of kindergarten as I mooned my entire class.

Halloween of 1978. My brother Cory was a cowboy, while my brother Shannon went as Chewbacca. I think I was supposed to be a ghost, or I might have just been going as a body cast that year.
Is that a spacesuit or just another body cast?
Me just standing around eating while in yet another body cast. If only I could have been as enthused as my brother Cory was here. By the looks of it I think I might have been able to fit that whole chair in my mouth!
I don’t know what is uglier in this picture, the body cast or that couch that I am leaning against.

London Calling – Part 4 of 7

By day two in London we had gotten a better feel for our surroundings and found that the transit system in London is quite accessible to those with disabilities.  Many of the train platforms have been constructed in such a way that those in wheelchairs can roll straight from the platform onto the train, which made it very simple to travel from one part of London to the next.  Likewise, just about every curb has a cutout or is level with the street so that rolling along the sidewalks is no problem at all.  I’ve never been in a city quite as accommodating as London, for not only are physical structures accessible, but the people are more than willing to go out of their way to help.  Nowhere was this more evident than in the tube stations and bus stops all across the city. 

Transit workers putting place a portable ramp that allowed me to roll up right onto the train in my wheelchair. I cannot say enough good things about these people.

As noted above, many train platforms are level with the train compartments so that rolling right onto the train in a wheelchair is very simple.  However, there are still some stations that do not have this kind of accessibility.  This was no problem though, as there always seemed to be transit workers there with portable ramps which enabled me to roll right up onto the train, as pictured above.  The kindness displayed by these workers was something I will never forget.  Many times we were asked what station we were headed to next and the attendant would radio the next stop and let them know that we would need a ramp.  I felt as if the whole of London was rolling out the “red carpet” for me wherever I went.  Now if only the queen would have invited us in for tea when we stopped by Buckingham Palace.   

These guards outside Buckingham Palace weren’t quite as welcoming as everyone else had been. They meant business standing watch with their automatic weapons at the ready.

The busses in London were also very easy to use, as they all are equipped with wheelchair ramps that come sliding out onto the sidewalk.  There is also a designated area just for wheelchairs in each bus.  An added bonus is that disabled individuals can ride the busses for free.  So, if you are thinking about heading to London you might want to get yourself a wheelchair.   

Buildings that are thousands of years old are also very accessible to those with disabilities.  For instance, when we visited Westminster Abbey, the staff from the church brought out portable ramps, which enabled me to roll right up into the cathedral.  This was true for every cathedral that we visited all throughout England.  Why are buildings that are far more new here in the United States not as accessible? 

Westminster Abbey was one of my favorite stops along the way.

With ease we were able to tour the market on Portobello Road, see the place where Jimi Hendrix, one of my musical heroes, died and visit other sites that we had only ever dreamed about seeing.  This was all made possible by those willing to lend a hand to two crazy Americans that jammed a month’s worth of sightseeing into just two weeks! 

The Portobello Road Market in Notting Hill. This place was so colorful and there were so many different things to buy.

London Calling – Part 1 of 7

You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty the ocean does not become dirty. – Mahatma Gandhi

A view of the River Thames from one of our first nights in London

The older I get the more appreciation I have for others that are able to show compassion. I believe there is still a lot of good in humanity. Despite what you might read in the newspapers or see on the television news, there are still many honorable people that are willing to help others in need. Perhaps, the best demonstration of this for me was on a recent trip that my wife Amanda and I took to England and Ireland.

Amanda and I departed for England on September 1 from Chicago’s O’Hare International Airport. As we got to the airport we checked in with the airline and then went straight to security. The TSA agents were polite and professional. However, getting through security at an airport has always been a particular “treat” for me. This time was no different.

I was escorted to a chair and asked to remove my belt and my shoes. Then once the security agents realized I was also wearing leg braces, I was asked to remove them as well. Next, my crutches were confiscated so they could be rubbed down and x-rayed to see if they were carrying any illegal substances. I guess my idea of becoming an international drug smuggler will never come to fruition, as my crutches are not the perfect hiding place as I once imagined.

So, there I sat with my pants half way off, no shoes, and no crutches. It really was a helpless feeling. After sitting there a while I began to wonder if they had forgotten that I was there waiting. Would I just be left there to spend the rest of my days in the airport? Fortunately, this did not happen and everything was eventually returned to me. Then the arduous task of putting everything back on began before I could leave the security checkpoint.

After passing through security we realized that our gate was at least a 10 mile walk, or so it seemed. I had already been violated by the TSA and now I was required to walk what felt like a marathon. However, the goal was worth it so I pressed on and we finally made it to our departure gate. Then, after a relatively uneventful 45 minutes we were told that it was time to board. Thankfully, since I have crutches, Amanda I were given priority boarding, which basically means only Amanda and the flight crew got to see me walk clumsily through the gauntlet of tightly packed rows of airplane seats.

Once we reached our seats, the flight attendants were very accommodating and helped us get our carry-ons in the overhead bins. This is the part of any flight that makes me a little anxious, as my crutches are usually taken away from me and stowed away in an overhead bin that is packed to the gills with baggage. What happens if I need to get up and use the bathroom during the flight? Digging through an overpacked bin to get a pair of crutches out is not an easy task. However, I figured I’d deal with it if and when the time came. Luckily, that time did not come until we touched down at Heathrow at about 11 p.m. London time.

When we disembarked there was an airport attendant waiting for me with a cart. I asked her to take me to the nearest restroom, which was just a short ride from the gate. After 8 hours I was finally able to find relief!

We then made our way to customs, which consisted of two grouchy agents asking us what we were in England for and where we’d be staying. Upon the conclusion of our brief interrogation our escort asked us where we needed to go. She then called a cab for us, which was a black Mercedes Benz. We knew that our hotel for our first night in London was just a few miles from the airport, however, our cab driver took us through an industrial area, which by night, looked like a perfect place for a murder to be committed. Where were we going and why did it seem like we were being driven to the ghetto?

Put the Crippled Kid up Front…

Thanks for joining me!

“Always laugh when you can. It is cheap medicine.” — Lord Byron

Me at 6 years old looking quite dapper for my debut in a medical journal. The eyes were blacked out to provide anonymity. However, the leisure suit was screaming “I’m loud and I am proud!”

Writing a blog is an idea that I have had for quite some time. However, I have always hesitated because I was not sure anyone would be interested in anything that I have to say. Then, it occurred to me that writing is something that can be very therapeutic. If people enjoy what I have to say then that is just a bonus.

Since I was in high school I have always enjoyed writing. Being a life-long introvert, writing gave me a way to express myself. It also helped me to unlock some of the thoughts I had kept bottled up inside of me for many years.

When I was born my parents were told to take me home and love me and to treat me as they would any other child. The problem with that is I was not like any other child. I was born with a birth defect called spina bifida, which would require frequent trips to Children’s Memorial Hospital in Chicago.

Children’s was like a home away from home for much of my adolescence. Despite what you might think, I have fond memories of Children’s. The nurses and doctors there provided a level of care that was second to none. This was also a place, where as a young boy, I began to see the absurdity in life.

Self-deprecating humor got me through many days and nights in the hospital. If I was not able to laugh at situations it would just lead to frustration. Having a disability is frustrating!

Living in a world that was not made for someone like me forces one to overcome. Thank goodness for my stubborness and for my sense of humor. They are two assets that I have used in my life to climb over obstacles.

This leads me to why I chose “Put the Crippled Kid up Front” as the name for this blog. This comes from an incident when my family and I were at a local restaurant. The wait for a table was quite long, so my mom whispered, “put the crippled kid up front.” I then walked to where the owner of the restaurant could see me. He took one look at me and we had a table.

Since this time “put the crippled kid up front” has become an inside joke for my family. It is a way that I have used humor to overcome obstacles. It has also led to some surprises along the way.

In this blog I will share some of those surprises and will explore how living life with a disability can be both challenging and rewarding. I hope you will stick around and see where life has taken me.

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