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…

2 + 2 = 4…or is it 5?

According to spinabifida.org “more than 10 million people worldwide have spina bifida.” Of those 10 million individuals, “approximately 90%” also have a disorder known as hydrocephalus. This disorder results in a disruption “in the flow of cerebrospinal fluid (CSF) through the pathways of the ventricles of the brain.” This abnormal flow of CSF “causes pressure on the brain.” Cerebral spinal fluid is a “clear, saltwater-like liquid that surrounds the brain.” Its job is to provide protection and hydration for the brain. Another function of CSF is to transport waste “away from brain cells.” Cerebrospinal fluid also supplies the brain with “important chemicals and nutrients.” Every “day the brain produces about 500mL of cerebrospinal fluid.” This fluid makes “a continuous circuit through the brain cavities (ventricles), and over the surface of the brain and spinal cord until it is absorbed by the body.” For those with hydrocephalus CSF is “constantly being produced” as normal, “but it cannot get out” to travel its regular circuit. Therefore, “it accumulates and causes raised pressure inside the brain.” This build up of pressure causes the ventricles to become enlarged, which in turn causes brain tissue to stretch and compress (spinabifida.org). Without proper treatment, babies born with hydrocephalus will die very soon after birth.

Within two hours of my birth, I was rushed by ambulance from Community General Hospital in Sterling, Illinois to Children’s Memorial Hospital in Chicago. It was here that Dr. David McLone implanted what is called a VP shunt. The VP stands for ventriculoperitoneal. Basically, what this means is that, I have a shunt that runs from the ventricles in my brain down into my abdomen or peritoneal cavity. This shunt drains the excess cerebrospinal fluid from my brain so that pressure is not allowed to build.

Learning disabilities are quite common for those born with hydrocephalus. Unfortunately, I am one of the many for whom this is true. For instance, throughout most of my schooling I had a very difficult time understanding math, especially algebra. This caused a lot of frustration while I was in high school. Understanding abstract concepts has always been a struggle for me. I can remember being in high school and feeling as if I would never make it through all of the various math classes that I had to take in order to graduate. However, with the help of several very good and patient teachers, such as Ruth Day and Cathy McCallister, I was able to complete my required coursework. I graduated from high school in 1995 and then it was on to college.

I started my college career at Sauk Valley Community College in Dixon, Illinois. Before starting at Sauk I had to take a placement test. To my horror, I was placed in remedial math. This meant that I would have to work my way up through several math classes in order to graduate. Starting out in remedial math classes was almost enough to make me want to through in the towel. However, I persisted and slogged my way up the ranks. In hindsight, I feel as if these classes helped me to review concepts that I had forgotten since high school. I also spent a lot of time in the Learning Assistance Center, receiving tutoring and extra help with my math classes. I give a lot of credit to Kay Turk and Jerry McNair for helping me pass these classes. They provided me with special attention, which enabled me to receive my Associate’s Degree in Communication Arts. However, this took me three years due to all of the time spent making my way through all of the math courses that I had to take.

After graduating from Sauk Valley Community College in the summer of 1998, I was on to Trinity Christian College in Palos Heights, Illinois. To my relief, once I enrolled at Trinity I realized that I would not have to take any more math! This is because I transferred in with my Associate’s Degree in Communication Arts. I cannot tell you how happy this made me. Maybe getting my four-year degree was something that was actually attainable after all.

I then completed two years at Trinity, where I received my Bachelor of Arts in Communications. I followed this up in 2012 with a Master’s Degree in School Counseling from St. Xavier University. Math is still my enemy. Ask me to do long division and I will just roll my eyes. Algebra is just a distant memory. I could not even begin to tell you how to do trigonometry or calculus. However, I am pretty good with geometry. I think this is because I can visualize angles, circumferences, and areas.

In conclusion, I’d write a 50-page research before I would ever attempt to do physics. Words are fun to me. I like to express myself through the written word. Equations are pointless to me. However, essays are something that I could write endlessly. I know 4+4 = 8 and that 5 x 2 = 10. Addition and multiplication are easy, but please, for the love of God don’t ever ask me to do long division ever again!

Diagram of VP shunt (https://www.ausmed.com/cpd/articles/hydrocephalus-and-shunts)

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.