Time

Baby Boy had his first trip to the beach today. Amanda and I had originally planned to spend more time on the water while on vacation. I would have enjoyed laying on the beach reading all week. However, the weather didn’t cooperate the first few days. Likewise, soon after we arrived in Panama City Beach we found that there are not many easy access points out to the beach for those with disabilities.

This does not make me upset. I am used to living in a world that was not made for people like me. It was difficult to get to and from the water today, but I would not have missed it, as I got to watch Baby Boy’s reactions to waves lapping at his feet. I also was able to witness his curiosity as he touched the warm, powdery sand. He often tries to figure things out. It is fun to see the wheels turning in that little head of his.

I think Amanda, Baby Boy and I got a little too much sun today, as we all were a bit tired after we came back from the beach. After washing most of the sand off of us Baby Boy and I settled down for a nap.

One day at the beach was enough for us. I know it was for me at least. I’ll be washing sand off of my body and out of my mouth for the next few weeks.

We still have a couple days in Florida. It has been good to leave the routine of home behind. Likewise, it has been good to connect with family that we don’t get to see very often. It has also been an important reminder that time is fleeting.

Sometimes we let frustrations get the best of us and we lose sight of what is most important. Time is very precious. We shouldn’t waste it by getting hung up on things that do not matter in the long run.

I am glad I got to experience this time with family. We will have travelled over 2,000 miles by the time we get back home on Sunday. However, it was worth it to the see the world through a child’s eyes this week. We’d all be better off if we did this more often.

The Sunshine State?

After an abundance of rain on Sunday, Monday, and Tuesday we finally saw some sun today here in Florida. Hopefully, that will continue tomorrow, at least for most of the day. We made it to the beach, however, we didn’t swim. We just looked out at the water. It was a magnificent sight.

Looking at such a large expanse of water is always relaxing. To hear the waves hitting the shore is so serene. The water was much calmer today. There were a multitude of sun- worshippers lined up and down the beach that we visited. I think I almost prefer just to look out at the water than to actually get in and swim. This is due to lack of access for those with disabilities, and my dislike of getting sand in places where it doesn’t belong.

I wear leg braces when I walk. Likewise, I use a pair of forearm crutches. By the time I get down to the beach I am usually worn out, as there are usually either a steep set of stairs I have to climb down, or there is a steep embankment I must navigate in order to make my way to the water.

Walking in sand with crutches isn’t easy. The tips often sink down into the sand. Then once I make it to the shore I have to take my leg braces off, which makes me feel self conscious, as my legs are scarred and misshapen. I feel like the eyes of everyone are usually upon me. Just looking out at the water is easier, as I don’t have to expose myself as much to others.

We will see if I am brave enough tomorrow to venture down to the water and show my ugly, scar-riddled legs to the world. If not, I will be happy just to see the water from a distance. It will still bring me peace.

What is There to Fear?

If you read my last blog post you know I have been struggling physically the last few days. I thought things were looking up until I went for a follow up with primary care doctor today. The infection in my foot appeared to be getting better. However, upon closer examination the wound on my foot had a sneaky, little hole that was leading down to my bone. Through this hole poured some of the infection. What this means is yet another surgery tomorrow.

As I have gotten older I have begun to question just how much more my body can withstand. I’ve had over 30 procedures done in the 43 years I have been alive. It seems there isn’t a part of my body that has been left unscathed by a surgeon’s scalpel. I have seen large chunks of flesh removed from my body, my head has been shaved bald, and I’ve had muscles removed from one part of my body and transferred to another spot.

I’ve had some great doctors. I have also had some fairly incompetent ones. The nurses, on the other hand, have all been terrific. They are the ones who really know what is happening. I’ll ask a nurse something before I ask any doctor. A nurse, even if they don’t know the answer, can usually do some investigative work and get you the information you need. Plus, they clean up all of the messes!

I don’t mind having surgery. It is nothing that scares me. I’m confident in the doctor who is performing the surgery, so I know I am in capable hands. There are great nurses around as well. Likewise, I know prayers are already being spoken for me. Therefore, it is in God’s hands. What is there to fear? I just hope they ask me what kind of music I want to listen to as I drift off to sleep!

P.S. I had my first test for COVID-19 today. It felt like someone shot onion juice up into my sinuses, as my nostrils begin to sting and my eyes began to water! After that I feel like I can face anything.

Progress?

Today marks the 30th anniversary of the passage of The Americans with Disabilities Act (ADA). This legislation gave equal rights to those with disabilities with respect to employment, transportation, public accommodations, government services, and telecommunications. I was 13 years old when the ADA became law. At that time I was too young to understand the importance of its passage.

I’m not a political activist. In fact, I shy away from politics as much as I can. Especially, today when there is so much that divides us as a nation. Likewise, I have always been a person that has adapted to my environment quite well. Therefore, when I was younger I did not feel impacted too much by having limited access to places and things.

I guess you could say I was used to living in a world that wasn’t made for a person like me. Moreover, for many years I felt I was too “normal” to fit within the disabled world, while being just disabled enough that I could never be totally accepted as “normal.”

As I have gotten older my mobility has decreased somewhat. With this I have come to realize just how important the ADA is for people with disabilities. Looking back it seems odd that a law like this was even necessary. Furthermore, the fact that it was passed just 30 years ago today is baffling. There are still far too many places that are inaccesible to those with disabilities. Likewise, according to recent data compiled by the U.S. Bureau of Labor Statistics, those with disabilities are still much less likely to be employed than those who are not disabled.

Working in social services I speak with many who are too disabled to work. Access to services for these individuals is often quite limited. I believe that those with disabilities are still often marginalized. Are those who are able-bodied fearful of those who are different? I believe many are, but I think there is more to the story as well.

People with disabilities need to advocate for themselves. For too long many of us have been silent. I include myself in this group. Relying on “big government” to cure what ails society is not the answer. We live in a time when a majority of politicians are more worried about mudslinging than they are in representing those who elected them. Yes, you can make your voice heard at the ballot box. However, you can also make your voice heard through social media, getting involved with an advocacy group, or work to educate those around you about the daily struggles those with disabilities face.

Living with a disability often means you feel as if you don’t belong. The world was made for those who can walk and talk without any difficulties. Barriers exist in everyday life that don’t exist for those who are “normal.” I wonder where we will be 30 years ago from now?

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.

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