Take a Sad Song and Make it Better.

Adapting to change is usually a difficult process. We often like to stay in our comfort zone. That way we don’t have to take any unnecessary risks or encounter difficulties that might prove inconvenient for us. Personally, I have always been a person who is perfectly content to maintain the status quo. Perhaps, this is out of fear. I don’t always enjoy letting others into my inner sanctum. You could say I am like Superman and his Fortress of Solitude. However, I am not a “man of steel.” I have doubts, fears, and insecurities. I have let these hold me back from experiencing many of the things life has to offer. This was especially true when I was younger.

When I was a teenager, girls were my kryptonite. I was perfectly fine hiding behind the walls of my fortress. If I didn’t take any chances then there was no opportunity to get hurt. I approached many of my relationships like this as I grew into adulthood. I’d only let people in so far, never letting them see the real me. I think for a long time I wasn’t even sure who the “real me” was. However, as I reached my 20’s I began to feel like a change needed to occur. I was tired of hiding.

I’ve always enjoyed the music of Pink Floyd. As an angst-ridden teen I could relate to the lyrics of many of their songs. There is a line in a song from their album The Wall that seemed to fit my life perfectly. The name of the song is called “Waiting for the Worms.” The line is: “In perfect isolation here behind my wall.” That is how I often felt as a teen. I was putting walls up around myself so that I’d never have to take risks. Risks, after all, might lead to heartbreak. Therefore, The Wall became the soundtrack for my teenage years. With its themes of abandonment and isolation I felt it perfectly described who I was at the time.

However, no one can truly live their life in such a way and be happy. I realized this after about a year of counseling, which I went through in my early twenties. I had a counselor who helped me to see that it was okay to let others in to my life. The walls could come down. I no longer had to seek out “perfect isolation.” It was okay to be me.

With this new found freedom, I began to open up to new experiences. I even began to date. This is something that I thought I’d never do. For, I used to ask myself “who would want to date a man who walked with crutches, and had other physical challenges?” Fortunately, this was only a misconception. I did find that there were people that wanted to be my friend, and there were even ladies who wanted to date me. I even found one that said “yes” when I asked her to marry me!

I have been married to Amanda for 7 years now. There are times when I still want to hide behind some walls. However, I think we are all like that at times. Together, Amanda and I are about to break down a huge wall. We will soon be foster parents. As I type this tonight, we are getting bedrooms ready to welcome children who need love and support. We are both ready for this challenge.

In the coming days and weeks, bunk beds will be assembled, walls will be painted, and Amanda will pass her FBI background check, at least we hope! The next few months will be all about breaking down walls. I am sure there will be children who will come through our door feeling much the same way I did as a young person. I think maybe we’ll put The Wall away in the closet and pull out some Beatles music instead. After all, it is time to “take a sad song and make it better.” For those who missed that reference, stop reading this and go listen to the song “Hey Jude.” On second thought just stay right here, sit back and watch the video below.

Not So Happy Little Accidents…

I hesitated at first to write about this experience because I feel as if it may be outside the boundaries of what is appropriate to share about myself. However, my intentions when I first started this blog were to provide a humorous perspective on what it means to be disabled. Some of the more challenging situations in life can also produce the most amusing, at least in hindsight. I tend to be a person that can find my way into some of the most absurd predicaments. These usually occur at the most inopportune times. Often it is my own body that creates events that make me want to run and hide. For instance, let me share with you what happened to me at work yesterday.

As I have noted before in this blog, controlling my bowels can be an issue for me. This is a common problem for those with spina bifida. I believe I might also have irritable bowel syndrome (I love to self-diagnose). These two conditions when combined can result in embarrassing situations. One minute I can be sitting down enjoying a conversation with someone and the next my bowels can go on high alert. If I do not hurry to the bathroom I can wind up having an accident, as I did yesterday at work.

I had just settled back down in my cubicle after eating lunch when I felt that unmistakable rumble in my gut. I knew there was little time to spare before I needed to head to the restroom. Fortunately, my cubicle is just a few feet from the restroom. However, that would not save me this time. When I sat down I realized I was going to need a change of clothing. This was going to be a problem. I usually keep a spare of pants in the backpack that I take with me to work. However, my backpack was in my cubicle and there was no way I could go and retrieve it. What was I going to do? My first thought was to scream “FIRE,” run out to my car, and speed home where I’d hide out until the apocalypse occurred. Then I came to my senses and did what anyone would do in this situation. I reached for my cellphone, which was tucked away in my pocket, and called my boss. Yes, I know what you are thinking, no one would actually call their boss in this situation!

I have a very understanding and caring boss who I knew would understand my situation, as she has a son who has special needs. Thankfully, I was able to explain my situation in a calm manner. I requested that she have a male co-worker bring me my backpack, which he graciously did. However, to my horror there were no spare pants in my bag! I then called Amanda, and being the loving wife that that she is, she left work to bring me a change of clothing.

I tell you this story for a few reasons. One, life can be a challenge when your body does not work properly. It is these times that you can choose to feel sorry for yourself, or you can rise above your circumstances and learn from them. Second, I want everyone who reads this to find the humor in it. Don’t feel sorry for me. Laugh with me and enjoy the absurdity that life can bring. Finally, I tell you this story to let you know that I am fortunate to work with such great people. When I go to work next week, I am gonna to ask my boss if she has ever had an employee call her from the restroom. I bet that she hasn’t. I will also bet that she will smile and we will have a good laugh. Life is far too short to take yourself so seriously. Learn to see the humor even in the worst of times. At the very least you’ll have a good story to tell.

Happy Little Accidents…

I have never been the most artistic person in the world. Despite this I appreciate art very much. It is enjoyable to stroll through Chicago’s Art Institute. There you can see paintings by some of the greatest artists who have ever lived, such as Claude Monet, Vincent van Gogh, and Georges Seurat. I have often thought that I don’t really have any true talents, at least not to the same degree as these artists.

When I was a teenager, my friend Charlie and I would watch episodes of the “Joy of Painting” with Bob Ross. I know he is not even close to being as great as the artists that I mentioned above. However, he seemed to make things look so easy. It was always sort of a desire of mine to try my hand at doing a class where I could learn how to paint like Bob Ross.

He had such a calm demeanor. Bob also seemed to enjoy everything that he did, especially when it came to “beating the devil” out of his brush as he would dip it in paint thinner and then whack it against the leg of the easel on which his canvas was sitting. While watching Bob, art seemed like something that I could do. Why couldn’t I mix up some phthalo blue and some titanium white and paint some “happy little clouds?” I might even be able to add some Van Dyke brown or some yellow ochre and paint some trees. Why shouldn’t I be able to create a world where mountains and streams live happily side by side on canvas? With these thoughts in mind I did indeed take a class with a “Bob Ross Certified Instructor.” What I didn’t foresee was that my color blindness might be a detriment to creating my own world on canvas.

As a birthday gift, Amanda bought us a session with a certified instructor that would show us how to paint in the style of Bob Ross. My sister-in-law Alice tagged along as well. We were all excited to try our hand at creating a landscape with lots of “little happy trees” and pristine mountains. However, as soon as we got started I knew this was going to be harder than Bob made it look on television. For one, I could not tell the difference between the various shades of red and green that were on our palettes. I have always had a difficult time distinguishing between dark greens and reds. Therefore, it was almost impossible for me to follow along as the instructor was telling us which colors we should mix together to create various parts of the landscape that we were painting. Despite my struggles it was still fun trying to create something.

I can safely say that I will never have any my work hanging in the galleries of any great museums. However, it was fun to fulfill my desire to try my hand at painting. I would definitely take another class. I am just not sure if the results would be any different. I’m certain that my painting would still resemble something that a 2nd grader has done. I’ll stick to writing. It is a place where I can escape. I enjoy putting my thoughts into words. It helps me to create a world in which I feel happy. Plus, I don’t have to clean any brushes afterwards. Oh, and just in case you were curious to see my painting. Just take a look below and tell me what you think. I made lots of “little happy accidents” as you can see. However, I am not to worried about it. I am sure Bob would have something positive to say. I don’t think he ever expressed any negativity. That just might be the best lesson he ever taught.

November

November has never been a favorite month of mine. It is the month where the weather usually starts getting much colder here in Illinois. Likewise, it is the month in which we turn the clocks back an hour.

It is nice to have more light in the morning as you are waking up. However, it is not so pleasant when darkness falls around 4:30 in the afternoon. Who wants to come home from work only for it to be too dark and cold to do anything outdoors?

Despite the drawbacks of November, there are still some pretty fantastic things to celebrate. One of them is the birth of my first nephew, Dalen. I was away at college when I got the call that he had been born. That event took place 20 years ago today. I remember going to the chapel of the hospital shortly after seeing Dalen for the first time. I gave thanks to God for him. I still do, as he is a thoughtful and caring young man. I continue to pray that God blesses his life.

It was three years ago today that I got to be a part of another celebration, the Chicago Cubs victory parade and rally. After 108 of futility they finally won the World Series. It was one of the greatest days of my life to be in Chicago on that day. It was a day that I will not ever forget. For more about that day see “Bleeding Cubbie Blue”, a previous post on this blog.

Finally, November is a time to celebrate Thanksgiving. This is not just a holiday for stuffing yourself with lots of turkey, mashed potatoes, gravy, and pumpkin pie. It is a time to thank God for His blessings.

I can say that I have been truly blessed with great family, memorable experiences, and a whole host of other things.

Happy Birthday Dalen, and Go Cubs!

This little boy is now 20 years old. Time gets away from us too quickly.

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!

Rings of Fire

I’d like to start this post by stating unequivocally that I am not an arsonist. These stories can simply be placed into the “Ryan Likes to do Dumb Things File.” Ever since I was younger I loved fire. I used to set things on fire in the metal trashcan that was in my room when I was a teenager. Mostly the things I set on fire were just pieces of paper. I am not sure what fascinated me about fire, whether it was the smell of the smoke that I enjoyed, or the flickering of the flames as they licked their way up the sides of the garbage can.

Having a bonfire was something that I especially enjoyed as a kid. I think I must have taken several years off of my life by throwing things into the fire that would emit toxic fumes, such as styrofoam. I enjoyed seeing the way various things would burn. Plastic melts very fast, as I have seen time and time again.

For instance, there was a time a few years ago when I loaded up a rotted out tree stump and took it out to my mother’s house. She lived in the country at the time, so it was a good place to dispose of the stump. Figuring that a good fire needed a little gas to really get going, I made sure to take along my little, plastic gas can that we use for our mower.

Once out at my mom’s house, I unloaded the tree stump and set it on the gravel in the driveway. With everything neatly arranged I dumped some gasoline on the stump and got out my lighter. This was quickly followed by a WHOOSH and a BOOM!!! I not only had started the stump on fire but the the plastic gas can had exploded mere inches from me. I then took a stick to try and get the remnants of the can out of the fire, however, the only thing that I managed to do was to fling a molten piece of plastic onto my elbow. I still have a faint scar from that brush with flames.

One person who shared my fascination with fire was my best friend in high school, Charlie. One afternoon shortly after getting out of school we headed to Charlie’s house. Leaving us unsupervised was usually not a good idea. Well, this particular afternoon we had some gas and a lighter and were out in his backyard. Charlie then proceeded to pour rings of gas around me and set them on fire. It was like I was a circus animal jumping through rings of fire, except I was actually jumping over them. That continued for a while before we set some leaves and grass clippings on fire in the backyard. I can remember the flames reaching so high into the air that you could see them over the roof of the house from the front yard. As you can imagine Charlie’s dad was not happy when he saw rings burned into his backyard. I am sure the shenanigans that Charlie and I pulled while were in high school, took some years off of his dad’s life. There are many stories to tell when it comes to Charlie and I. However, I will save those for another time.

I can say that some of these experiences have taught me how fragile life can be. I’m lucky that I was never seriously hurt doing some of the things I did as a kid. Likewise, it is a good thing that no one else was ever hurt. I don’t play with fire anymore, but I still love a good bonfire. These days I just stick to marshmallows and hotdogs as my favorite things to place into the fire.

Boot Heel Fever

If there is one thing that frustrates me the most about having spina bifida, it is the fact that I have to wear leg braces. It is often hard to find shoes that I like that will fit over my braces. It is especially difficult when the orthotist (the person who makes said braces) gets it in his head that he should redesign the braces that you wear to put “less stress on your knees.” However, that is the situation that I found myself in a few years ago when I had my last set of braces made.

Growing up I had braces in all shapes and sizes. Some of these had buckles in places that made finding a decent shoe next to impossible. Despite this it seems as if I have always been able to make the situation work, no matter the style of braces that have been made for me. For years I used to go to Keller Orthotics. They are located in Chicago’s Lincoln Park neighborhood. This is an area of Chicago that I spent a lot of time in while I growing up, as Children’s Memorial Hospital used to be located in this section of the city. It is a neighborhood rich in history, especially during the years of the Great Depression when Chicago was ruled by the likes of Al Capone, Lester “Baby Face” Nelson, and John Dillinger. In fact, just down the street, a block or so from Keller Orthotics, is where John Dillinger was gunned down. It was in an alleyway just outside the Biograph Theater that this event took place in 1934. I remember passing this same alleyway numerous times, as my parents and I made our way to the brace shop for yet another fitting.

Keller’s was, and still is a family-owned shop, where I spent a few hours each year as a child. As a growing boy I needed to get new leg braces fairly often. My orthopedic doctor always referred me to Keller’s, as they were a shop that worked with Children’s Memorial to create orthopedic accessories for children who needed them. Peter Keller was the owner of the shop when I was growing up. He has since passed away. I remember him as a gregarious man with a fairly, thick German accent who always showed a genuine concern for those children with whom he worked. His shop turned out quality products that would last until it was time for a new pair. I think one of things I remember most about going in to Keller’s were the various autographed pictures of Chicago Blackhawks hockey players that adorned the walls of the examination rooms of the clinic. The picture of the late, great Stan Mikita was my favorite. He is one of the most legendary players that ever laced up a pair of skates for the Blackhawks. Stan’s name is one that figures prominently in the movie “Wayne’s World,” which stars Mike Myers and Dana Carvey.

Keller’s made my leg braces until I was in my early teens. Around the age of 17 I stopped going to Children’s Memorial, as I was no longer a child. Therefore, I had to rely on various other shops that were closer to home to make my braces. This is when things began to take a turn for the worse. My orthopedic doctor here in town began to refer me to other orthotists that were not as skilled in the art of making leg braces. However, there was nothing much that I could do about that, as traveling to Chicago to have my braces made was no longer an option.

Therefore, I had to begin settling for second-rate shops that made braces that were of less quality than those made by Keller Orthotics. This is especially true for the current pair of braces that I have. As noted above, I had very little say in the design of my latest braces. That is why I now am wearing a pair that literally have boot heels. How is a person supposed to find a decent pair of shoes when the leg braces they are wearing have a boot heel that juts out from the bottom? I am now relegated to wearing “old man” tennis shoes such as New Balance. Hopefully, one day soon I will find a shop that will listen to my input and make a pair of braces that suits my tastes. Until then I am stuck with my boot heel braces. Maybe, if I get a pair of bell-bottomed pants I can start a fashion trend amongst the disabled community. Boot heels and bell-bottoms might become the craze with those of forced to wear leg braces. I might just start a “Saturday Night Spina Bifida Fever.” Watch out John Travolta, here I come!

Low Riser

It was a late Sunday afternoon. Amanda and I had just attended the graduation ceremonies at the high school where I was working at the time. It was Memorial Day weekend and neither one of us had to work the next day, so we thought we’d go get some dinner and then see a movie. This was a spur of the moment decision that we made once graduation had come to an end. Both of us were dressed in fairly nice clothing. Therefore, going to a movie in dress pants and a polo was not my ideal outfit for a relaxing evening.

The school where I worked was about a 30-minute drive from home. The movie theater we were planning to go to was nearly 30 minutes in the the other direction. Therefore, instead of going home and changing, I decided we’d just stop at a Target and I’d get a more comfortable pair of pants to wear for the night. Not being one who likes to shop, especially for clothes, I hastily picked out a pair of pants that looked good. The only problem was I did not inspect them thoroughly enough before leaving the store.

After leaving Target, we drove to a Burger King where I went inside to the restroom and changed out of my dress pants in to the new pants I had just purchased. That is when I realized two things. First, these pants had an elastic band around the ankles. I despise pants like this, as they do not hide my leg braces very well. The second thing I noticed immediately is that they were a fairly low rise cut around the waist. I felt like a clown walking out of the bathroom and back to the car in these things. However, I wore them to dinner and then to the movie. I don’t even recall what movie we saw that night because I was so focused on my pants!

Fortunately, they were black, because about nearly halfway through the movie I spilled Coke all over them. There I was in a darkened movie theater with wet, Coke-stained pants, that had ridiculous-looking ruffles around the ankles and a low-rise waist band. The trip back to the car was going to be fantastic! Oh, and I forgot to mention, due to the low-rise waist band I had to stop every few feet on the way into the theater to yank my pants up, as they constantly were falling down. So, that would be another dilemma going out of the theater as well. I often get myself into these types of situations. You would think one day I would learn. Maybe someday I will.

Anyway, the movie finally drew to a close and we waited for everyone else to clear the theater before we made our way back out the car. Again, I had to stop every few feet to pull up my wet, low-rise, ruffled-cuff pants from hell! It was only by the grace of God that these things did not fall down all the way as I was walking back to the car. It was then that I decided that I was either going to take these things off right there in the parking lot and set them on fire, or they were going to back to Target, coke stains and all. I partially came to my senses and asked Amanda if she’d take them back to Target for me. Yes, I know, how could I take a pair of pants back to the store that had been soiled, but doggone it, I did it anyway. Well, Amanda actually did, but I digress.

So, we drove back to Target, I slipped off the pants, they went back in the bag from the store and Amanda got our money back! I rode home that night in my underwear praying that we’d not get pulled over by the police for any reason. Otherwise, I might have some explaining to do.

At this point you might be asking, “why didn’t you just put your dress pants back on that you had worn earlier in the day?” I don’t know why actually, I think it was my way of protesting the low-rise, skinny-jeans fad that plagues America today. Fat men need pants too! Next time, I am just going to pack some sweats and a t-shirt. I don’t know why Amanda loves me, but I am glad that she does. I am not sure if the people at Target have ever figured out what was on those pants, but we have been back to that store since. Fortunately, there are no posters with my face on them banning me from the store. In fact, we were just there yesterday. I kept my distance from the men’s clothing section.

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…

“A Chasing After the Wind” Kind of Day…

There are many changes in life that we all face. Many of these are often beyond our control. For instance, many of us have changed jobs. All of us have experienced loss in one form or another. These losses bring about change. Some of us have experienced the loss of a loved one. There are others who have lost faith in someone that they have trusted. Sometimes change can be a good thing and other times it can be something that is very hard to accept. I don’t always adapt to change very well. In fact, I often find it to be very frustrating. However, if there is one thing that I have learned in life, things are always changing.

Here in Illinois the leaves on the trees have changed color. Many of them are also beginning to fall to the ground. Autumn is upon us and there is a chill in the air. In a few months there will be snow on the ground and the winds will be howling. Icicles will be hanging from the gutters.

I am often struck with how quickly time passes. Just yesterday it seems like I was a boy without a care in the world. However, I am now 42 years old and often feel overwhelmed with the responsibilities of adulthood. Although, I have far fewer concerns than most, I am sure. Despite this, autumn is a time of year that I get kind of melancholy. I am not sure if it is because the days become shorter, and life just often feels cold. My moods tend to get darker at times throughout this part of the year. Life can seem pointless at times. However, I have faith that it is not. I believe there is something better waiting for me after this life passes.

In spite of my faith, life is still difficult. There are good days and bad days. Fortunately, the good days usually outweigh the bad. During the difficult times, I would just like to bury my head in the sand and wait for better days to arrive. However, that is not possible. We all have to take the good with the bad. I know seeing the bad often helps me appreciate all of the good things in life.

Living life with a disability is a struggle. Living with depression and anxiety, as I do, can magnify those feelings. It is hard to beat back the blues when they arrive. Lately, life has seemed cold, and that is not just because we haven’t had the heat on in the house! It is a time where life has seemed meaningless. When my mind wanders to such thoughts, I recall the words of King Solomon in Ecclesiastes 1:14. In this biblical passage Solomon expresses his thoughts on life by saying: “I have seen all the things that are done under the sun; all of them are meaningless, a chasing after the wind.” He is right, all things “under the sun” are meaningless. That is, they are meaningless without a Godly perspective. This is a perspective on which I often lose focus. That is when the dark days are their darkest. I pray that I never lose focus on the point that God is no longer present, for He is what brings true meaning to everything that we do “under the sun” and beyond.