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.

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!

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)

The House Call

This device was both friend and foe for many years.

Growing up I received some of the best medical care that was available for people who were born with spina bifida. I was fortunate to live just a couple of hours west of Chicago, which was home to Children’s Memorial Hospital. If you have read some of my earlier posts, you might recall my fondness for this place. Despite the pain that I experienced in that building, there were also lots of memorable moments.

Many of the memories connected to Children’s Memorial involve the doctors that I was blessed to have had there. First, there was Luciano Dias, who was a kind and gentle man. He had a passion for what he did and that showed in the way he treated his patients. He performed many of the orthopedic surgeries that enabled me to walk. Everytime I went to see him for my yearly check-ups he always showed great concern for me not only as a patient, but as a person.

Another wonderful doctor that I had gave my parents some great advice after I was born. He told them simply to “take me home and love me just as they would any other child.” This doctor’s name was David McLone. He was my neurologist for several years. Dr. McLone was a man with a great deal of compassion. His advice to my parents was some of the best that they would receive during a time of great uncertainty and fear. When I was born in 1977, not much was known about spina bifida. I am sure my parents were scared and unsure of what was in store for them. However, by the grace of God, they had some of the greatest doctors on whom they could rely for encouragement.

Besides Dr. Dias and Dr. McLone, there was also Dr. William Kaplan. He was another doctor who looked at me not as just another patient. He truly cared about working to improve my quality of life. Dr. Kaplan went above and beyond to ensure that I received the best treatment that I could.

As I noted in my last post, one of the most common problems that people who were born with spina bifida have is bowel and bladder incontinence. There are various procedures that I have had to help with these issues. Dr. Kaplan, who was my urologist while I was growing up, performed a few of these operations.

For instance, in 1986, he implanted a device called an artificial urinary sphincter. This device had a tiny pump that was inserted into my scrotum. From this pump there was a line that ran to a valve that was placed around the neck of my bladder. This allowed me to have control of my bladder. Every time I needed to urinate, I’d simply squeeze the pump a few times, which then released the valve at the neck of my bladder. The only problem with this device is that if you pumped it too hard it would lock the valve around the bladder. This was something I’d learn the hard way.

One summer day shortly after having the artificial urinary sphincter implanted, I was in the bathroom at home using the toilet when I put too much pressure on the pump and it locked up. What was I to do? I had to pee and my bladder was locked up tighter than the Hoover Dam!

Not knowing what else to do, my mom called Children’s and they suggested that we come right away to Chicago. As you might recall from earlier in this story, we lived two hours west of Chicago, and I had to pee! Therefore, we got in the car and made our way into the city. Dr. Kaplan was informed what had happened and he asked my parents to drive me straight to his house. Here we were making a house call in reverse. Fortunately, after two hours of torturous travel on a full bladder we arrived at Dr. Kaplan’s house.

He then instructed me to lay down in the foyer of his home where he proceeded to perform a miracle, at least in my eyes. He was able to get the pump of the artificial sphincter to release the valve that was holding back the floodgates. I then proceeded to relieve myself right there on the floor in Dr. Kaplan’s foyer.

This was a moment of great joy, as I finally had found relief. However, I was not sure about what had just happened either. Dr. Kaplan took it all in stride. He acted like it was just another day at the office. I am pretty sure his wife was not pleased about me using the entryway of their home as a toilet, but she was gracious. I also now had a story to tell.

Life is never dull when you have a body that operates in ways unlike most “normal” ones do. However, not many people can say they have urinated on the floor in the homes of one of their doctors. I am proud to say that I am perhaps one of the few.

Fasten Your Seatbelts, It’s Going to be a Bumpy Ride!

A common problem for those who were born with spina bifida is infertility. This is an issue that can cause a lot of frustration and heartache. Amanda and I have undergone various tests and procedures in order to try and conceive a baby. However, nothing that we have tried has proven successful. Therefore, after much thought and prayer we have decided to take on the challenge of becoming foster parents. We hope that this will lead to adoption in the future.

We have taken classes in order to become licensed foster parents in the State of Illinois. I can say that these classes have not been very fun, as a lot of the material is fairly dry. Also, a lot of it is common sense, as Amanda and I were both raised in homes where good parenting was modeled. Despite this I think it has been a good experience, for it has given us insight into various things. For instance, we have been exposed to the types of issues children who are placed into foster care have when they come into a new home.

Having worked as a high school guidance counselor for several years, I am aware of the problems that children can have at home. I have spoken to students whose parents are alcoholics or drug addicts. I have also seen kids who have been abused or neglected. Seeing these things firsthand has made me a little apprehensive at times in taking on the challenge of fostering a child. However, I am also excited about the experiences that are in store for Amanda and I.

Do I think it will be easy? No, in fact, I am sure there will be days where I will feel like throwing my hands up in frustration. Will I ride away on my bike to get away from the situation as my mom once did when my brothers and I were fighting? That is a distinct possibility, but I’ll always come back, as I am not a quitter. Oh, and by the way, if you know my mom, you should ask her about the bicycle story. It is one of my favorite memories to look back on and remind her of on occasion.

Anyway, I am sure once we are through the licensing process things will start to move fairly quickly. However, I know that with God’s help we can make it through the challenges that we will face. I am just hoping our cats don’t go into hiding on a permanent basis.

When The Moon Hits Your Eye Like a Big Pizza Pie…

It has been far too long since I have posted anything here. However, that is about to change. October is Spina Bifida Awareness Month. Throughout October I plan to post various pieces of information about spina bifida. I will give you facts about this birth defect. I will also provide some of my own experiences that relate in some way to these facts. To that end, today I will provide you with one of the most challenging aspects of living life with spina bifida.

Many people with spina bifida have limited bladder and bowel control. This can present challenges not only for those of us who work full time, but also for those who enjoy being active socially. Perhaps, one of the best illustrations of how challenging all of this can be is a story that I haven’t shared with too many people. I hope it is one that does not offend. However, one of my goals with this blog is to be as genuine as possible.

Amanda and I had been seeing each for several months when we were out one night on a date. We had decided to go and get some pizza. After that we had plans to go to a movie. The pizza place we chose was one that neither of us had ever tried. That perhaps was the first mistake of the evening, as the pizza was very greasy and not very appetizing. Despite this we were just enjoying being together. We finished our pizza and then decided we’d go grab some snacks that we could sneak into the movie. As we were at the convenience store picking out our treats, my stomach began to rumble. If you have ever seen the movie Dumb and Dumber, just picture the scene when the character Harry unknowingly ingests a laxative and then experiences a serious bout of gastric distress.

My stomach was making all sorts of noises and I knew it was time to get to a restroom. However, I decided that I could wait until we got to the theater before I took a pit stop. This was not very wise, as I did not quite make it to the restroom before the floodgates opened. While I had made a beeline to the restroom, Amanda had picked up our movie tickets and had headed into the theater.

So, there I was in the restroom, trapped! This was one of the most sinking feelings in the world. How was I going to get myself put back together after having messed my pants? I had no spare outfit with me. Maybe I could just spend the rest of my days in the stall of that men’s restroom. I certainly couldn’t face Amanda. However, I plucked up my courage and sent her a text letting her know what had happened. She then proceeded to get a refund for our tickets, while I sheepishly made my way back to the car. Fortunately, we were not too far from a clothing store where I was able to replace my soiled clothing and once again make myself presentable to the world.

It was this night that I knew Amanda was the one for me. She acted like it was no big deal, although I am sure she must have been mortified. It was a freeing feeling knowing that despite all of this she still wanted to get to know me better. She had many chances to make her escape while we were still dating, but she has always stuck with me. We just celebrated 7 years of marriage in August. I am very fortunate to have met someone who still loves me despite the difficulties that spina bifida can present.

These challenges often make me feel less than manly. It is frustrating to know that I always have to be on guard, as my body works differently in so many ways. Fortunately, Amanda and I can both see the humor in events such as the one described above. If you can’t laugh in these times, life would be very bleak. There are always ups and downs. I am just glad to have someone with whom to ride the roller coaster.

Spina Bifida Blues

Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad.” ― Henry Wadsworth Longfellow

I think it is safe to say that most, if not all of us feel down at times. What do you do when you feel like this? I have to be honest, there have been many times when I have felt despair. This despair is something that has made me feel alone. I have been afraid to share my true feelings, even with those closest to me.

Some of this has been brought about by my feelings of inferiority, which I have touched upon in previous posts. I often feel as if I am not good enough for anything or anyone. These feelings often lead me to doubt myself in almost every facet of life. Many days I go to work worrying that I am going to “screw up” or forget to do something.  I believe one of the things that has fueled these feelings of insecurity is that others have often “talked down” to me as if I am too stupid to communicate just like anyone other person.  My legs don’t work correctly, but my brain functions pretty well.  Just don’t ask me to do math! 

This doubt can be paralyzing. Fortunately, I have reached out to others who have helped me begin to see myself in a more positive light.  Counseling has shown me that I do have things I can contribute to society.  It has been a positive experience sharing my doubts and insecurities in a therapeutic setting.   

Writing this blog has also been a cathartic experience, as it has helped me unleash some of the “demons” that rule my thoughts.  Likewise, the power of prayer has also been very instrumental in helping me get over some of these irrational fears.  I must be honest there have been many times that I have lashed out at God for “placing” me in this body.  

Humor is always good medicine as well.  I have learned over the years that you have to laugh at the circumstances of life.  This helps one move past the bad and appreciate the good things that life has to offer.  I wish I could go back and tell my younger self to shut out the negative thoughts and focus only on the good.  That is a lesson that I am just now learning as a 42 year old man.   

Finally, it is important to keep active.  Now that the weather here in Illinois is getting warmer, I will be outside cycling away my blues.  

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.