My “Anti-Bucket” List

Last April I wrote a post listing the “Top Ten Things I’d Like to do Before I Die.” This list included places I’d like to visit, events that I would like to attend, and so forth. Today I am going to turn things around and do an “anti-bucket list” or things I hope I never have to do again before I die.

There are certain foods that I despise. Near the top of this list are lima beans. To me they taste like soap. Plus, their texture is unpleasant. Therefore, I will never have another lima bean as long as I live!

Over the course of my life I have undergone at least 30 different surgical procedures. Being put under for surgery is not an unpleasant experience. I do enjoy the feeling of euphoria that comes over you just before “the lights go out.” However, as I have gotten older it has taken me longer to bounce back after surgery. It is because of this that I hope to never have another surgery.

One thing that does not fill me with euphoria is riding a rollercoaster. I actually am terrified of going on most amusement park rides. I prefer to have my feet planted on terra firma. I would be happy never to ride another roller coaster as long as I live.

In keeping with the amusement park theme, I hope to never go to Disney World ever again. I went for the first time at the age of 30. Perhaps, it is a different experience if you go when you are a child. It may seem more magical then. However, I didn’t find anything appealing at all to being at Disney World.

Me on the “Small World” ride at Disney World. I think my face says it all.

A few years ago I went on a canoe trip on the Meramec River in Missouri. I have written about this experience in a previous post. It was quite possibly the last trip of this kind that I will take. If you do go back and read both parts of this story, you’ll see why. I not only lost my crutches and glasses, but I lost some of my dignity as well.

One thing that I have experienced a couple of different times is food poisoning. I can safely say I hope this never happens again. There is nothing pleasant about eating something that makes you ill. I can no longer eat at couple of different restaurants due to very bad experiences.

Nearly three years ago Amanda and I had an issue with the plumbing in our house. I will admit it was caused by me. I had gotten into the habit of flushing little bits of clumping cat litter down the toilet as I cleaned out the litter box for our cats. Needless to say this was not a wise idea. Fortunately, I have a cousin or two in the plumbing business, as our sewer line backed up into our house. I learned my lesson and I hope to never have to live through this experience again.

As noted above, I have had numerous surgeries in my life. Many of these have been orthopedic in nature. I spent the first few years of my life in and out of body casts. There is nothing worse than being confined inside a hunk of plaster, especially when you are hot and tired. This is an experience I would prefer to never have again.

Me propped up against a chair in one of the many body casts I was in as a child. My brother Cory is looking on in amusement as I see just how wide I can open my mouth.

We are fortunate here in America to have public restrooms in almost every store and restaurant. If you’ve ever traveled abroad you’ll soon find out that in other parts of the world public toilets are not so common. I learned this the hard way one night in London as I really was in dire need. While I do love to travel, I hope to never again have the trouble I did that night.

Finally, I have spent the last two months working from home. In that time I have begun having conversations with myself while Amanda is at work. I am ready for restaurants, movie theaters, and other public places to once again be open. Never again do I want to experience a global pandemic. In the words of the late, great Jerry Stiller, who played Frank Costanza on Seinfeld, “Serenity Now!”

“Those Things“

Some of the conversations I have with others can be amusing. I suppose I should find them offensive. However, I am a very politically incorrect person myself. That should be apparent to those who follow this blog. After all what disabled person would refer to themselves as “crippled?”

Just a couple of weeks ago I was at the gas station filling up before heading out on a road trip. One of the attendants approached me and said, “Hey, I have been on those things before.” Having had many such conversations in the past, I instantly knew he was referring to my crutches. This gentleman proceeded to recount his experiences of walking with “those things” after turning his hip bone into “powder” as a result of an automobile accident he had been in as a young man.

This man was kind and polite, however, I wonder if he realized that my crutches are more than just “things” to me. They are essentially an extension of my being. They serve as my legs. Likewise, they often operate as hands. I use them to grab things that are often out of reach of my normal wingspan.

I did not find this man’s comments hurtful or disrespectful, as he was just trying to make conversation. However, his experiences with “those things” are far diffent from my own. My use of them is not temporary. I have walked with crutches for over 30 years. God willing, I will walk with them for at least 30 more. They will never just be “things” to me. Are your legs just “things” to you?

Acceptance

I appreciate people who do things with excellence. Perhaps this is something I come by naturally. My father was a perfectionist who was a skilled craftsman. He was not only a talented carpenter, he was also a welder. His work was done with precision and skill. These traits are ones I have always admired in others.

For instance, I grew up idolizing Michael Jordan. He was the greatest basketball player ever to play the game. His skills on the court were legendary. However, they were developed over years of dedication and practice.

Another person I grew up admiring was Neil Peart. Neil was the drummer of Rush, a Canadian rock band known for crafting pieces of music that were very intricate and complex. Neil passed away early last month, but he left behind a body of work that will stand the test of time. Besides being one of the best drummers that has ever picked up a pair of sticks, he was also a brilliant lyricist, as well as a very gifted author. His books are some of my favorite biographical works of literature that I have ever read.

Music is something that I have often looked to for inspiration, escape, and solace. I think listening to others express themselves through music gave me hope. I was not the only person who felt alone or angst-ridden.

Growing up I often felt alienated from my peers. I was different. My body did not look the same. Likewise, I wasn’t always able to do the things others my own age could do. Therefore, I often retreated inward. I was not a talented person. I was not able to build anything, play basketball, or write a song. However, I did appreciate the people who could do these things.

I still feel like I am not particularly good at anything. I am okay at doing a few things. However, I don’t have any skills that stand out as exceptional. The older I have gotten the more accepting of this I have become.

I’ll never be a craftsman, and I will never defy gravity on a basketball court. I will also never write any great pieces of music. However, that is okay. I am learning to appreciate who God created me to be. I still have work to do. Hopefully, 2020 will be the year I reach some of the goals I have set for myself. I keep hoping there is a novel somewhere inside of me just waiting to be written.

It’s Just a Crutch…

I have walked with crutches since about the age of 4. Not to brag, but I am pretty good at walking with them. In fact, you could say I am great at it. Except, for those times I swing one leg out a little wide and kick a crutch out from under me. One thing I have learned about these two aluminum sidekicks that I have is that they are so versatile. The old proverb, “necessity is the mother of invention” had to have been coined by someone who walked with crutches.

My crutches have become an extension of my physical body. They can be used to pick things up that have fallen to the ground, much like a set of chopsticks. I can also use them to reach out for things that are out of reach. Likewise, they are good for pushing doors open. I can even use them to start the car from the passenger seat. This is especially true now that Amanda and I have a vehicle with a push-button ignition. Just push the brake pedal down with one crutch and push the ignition switch with the other and we are ready to roll.

If you are familiar at all with Marvel Comics, especially those starring Spider-Man, you might have heard of a character by the name of Doctor Octopus. He is one Spider-Man’s most prominent enemies. Doctor Octopus, or Doc Ock, is a “mad scientist” who created a set of mechanical tentacles that he can attach to a harness strapped around his waist. These tentacles are quite strong and allow Dock Ock to move very meticulously. Despite his evil deeds, I have always related to Doc Ock. I feel my crutches are much likes his tentacles. They are my way to move throughout the world. Moreover, as noted above they are useful in so many different ways. Have I mentioned that I can use these things to launch bottle rockets on Independence Day?

My crutches have also been a form of protection at times. I never had much of a problem with other kids picking on me when I was in school. However, whenever anyone got a little out of line, all that it took was a quick whack to the shins with a crutch for them to leave me alone. I am sure my brothers could tell you how this feels.

It is difficult to envision life without my trusty sticks. They are part of me. They have helped me adapt to life in a world that was not created for people like me. Likewise, they make things more interesting. If you don’t believe this just follow me up an escalator sometime and you will see what I mean.

Omphaloskepsis

As I’ve noted before in a previous blog post (see The Summer of Ryan), I enjoy the sitcom Seinfeld. I relate to the character of George Constanza, as I tend to be a bit neurotic at times. It is for this reason that my mind usually goes to extremes after I have had surgery. I worry that there will be complications that will delay healing, which has actually happened a few times after previous surgeries.

Today, I have had some chills and a low-grade fever. In truth, this is probably because I have become a little dehydrated. However, my mind instantly goes to the possibility of infection, despite there being no indications of this. Should I go to the ER, or should I just stay home? I often weigh these questions heavily. I also feel quite run down, but I guess that is to be expected a few days after having surgery.

It is difficult to be patient when you are the patient! I want to be back on my feet doing everything I could do a week ago before my gallbladder became my worst enemy. Despite this, I know that healing takes time. It is just a little frightening when your body is doing things it normally doesn’t do.

For instance, I had a blister inside my belly button that popped this evening. It almost appeared as if someone was trying to blow a bubble from my umbilical area. I was thinking this might be a new party trick that I could unveil at Christmas – “Step right up and watch me blow bubbles from my belly button!” I could even take this show on the road. I’m sure there is an audience somewhere that would appreciate my act.

Having surgery is nothing new to me. I have seen my body in much worse shape than it is tonight. However, the paranoia sets in when something unexpected happens. You’d think I would have learned by now to be more patient as the patient. However, at 42 my mind still wanders to the “what ifs.” What if I do have an infection starting? What if I will never be able to have another bowel movement? What if I feel like going to work on Monday, but I can’t get any pants to sit comfortably over and around my surgical wounds?

This is a busy time of year at work, and I am not there. How big of a stack of things are waiting for me upon my return? I would say probably quite a few.

These are all things that I will pray about. Life will go on and I am sure I will be back to my old routines soon. Until then I’ll continue to navel gaze. I’ll let you know if the bubbles keep coming. I am off to take my temperature…

Four statues which stand in the Louvre, depicting the fine art of naval gazing. I like the Greek word for this practice much better, which is “omphaloskepsis”

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 throw 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.