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.

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

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!

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.

My Dad

My dad died on September 2, 1989.  It has been almost thirty years since that dreadful morning.  My brothers and I were up past midnight when the phone rang.  It was my mother calling to tell us that our dad had passed away.  She was with my dad while he took his dying breath.  My two brothers and I got into my dad’s pickup truck and drove to the nursing home where my dad had spent the last few weeks of his life.  My brother Shannon refused to enter the room where my dad’s body lay, however, my brother Cory and I went in and saw him for the last time.  It is something that I regret doing, as I will never be able to erase the image of my dad’s lifeless body from my mind.

That morning is one that will stick with me as long as I live.  I can remember how it felt outside that morning.  I remember the smells in the nursing home, and I can remember the feelings of fear and uncertainty as we returned home.  What would life be like for all of us now?  What would it be like to live the rest of my life without a father? 

The months that preceded my father’s death were just as frightening.  At that time I wished I could just fast forward through it all and be an adult.  Here I am almost 30 years later.  I am now an adult.  I still have dreams on occasion that my dad is still alive.  I then wake up and am angry that he is not here. 

I feel as if my brothers and I were cheated.  We had to grow up without a dad who could show us how to be men.  My mother was cheated out of being able to grow old with the person that was the love of her life.  However, my dad was a man that took care of things before he died. He was always a man who was financially responsible.  Therefore, he left my mom without debt that she would have to carry while she tried to pick up the pieces for all of us. 

Being only 12 years old when my dad died, I never really got the chance to get to know him properly.  I do have good memories of him though.  There were times he would get home late from work on a Friday and we’d order pizza, although I was usually too tired to stay awake.  I also remember my dad being a hard worker.  He was a skilled welder and he provided well for my family and I. 

He also had a great sense of humor.  There were many Saturday nights spent around the dinner table while he told us stories of his life growing up, or about his days in the navy.  My dad was an honorable man.  He treated others with respect, and he was always willing to help a friend.  When he died there were hundreds of people that came to pay their respects.  Many of them recalled that he was a man of integrity.  My dad was not perfect, but he was an honest man, who worked hard to make a better life for his wife and children. 

This coming March I will be the same age my dad was when he died.  It is hard to imagine dying at such an early age.  I still feel rather young.  I have so much more living to do.  Why my dad couldn’t stay with us longer, I don’t know.  However, I can say that he was a man that I respect and that I will one day see again.  That brings comfort on days like this when we celebrate fathers.  My dad is in a place where there is no sorrow and where there is no pain.      

My dad with his 1940 Chevy Coupe. I remember watching him work in his garage restoring this car. My dad was able to fix just about anything.

Memorial Day

“Those who do not learn history are doomed to repeat it” – George Santayana

Travelling is one of my favorite things to do.  It is always enjoyable to go to unfamiliar places and experience new things.  A few weeks ago Amanda and I flew to visit Washington D.C.  This is a city that we had been to before.  However, because I love history so much, it is a city that I could visit time and time again.  The city is full of memorials to past presidents, fallen soldiers, and those who have helped lay the foundations of the United States.  It is also a place where one can see the buildings where the gears of our republic spin. 

The last time Amanda and I travelled to Washington D.C. we only had about a day and a half to try and squeeze as much sightseeing in as possible.  However, on our latest trip we had four days to explore the city, which was still not enough time, but it was a memorable time nonetheless. 

We got to visit some of my favorite sights in the city, such as the Lincoln Memorial and the Vietnam Memorial.  These are two places where one can feel both pride and sadness.  The Lincoln Memorial to me is such an awe-inspiring sight.  The statue of Abraham Lincoln, who was perhaps our greatest president, is such a beautiful sculpture.  It is a peaceful place where people are quite reverential as they pass through the great marble hall where the immense statue of Lincoln sits. 

This is a place where one can take in just how perfectly laid out the city is in relation to how the buildings and monuments are situated.  Looking out from where Lincoln sits, one can see the Washington Monument, which is reflected in the pool that sits in front of the Lincoln Memorial.  Lined up perfectly with the Washington Monument and the Lincoln Memorial, is the U.S. Capitol building. 

View from the Lincoln Memorial out the Reflecting Pool

Just a short distance from the Lincoln Memorial is a site that brings me great sadness when I see it.  That is the Vietnam Memorial.  This is a giant wall sculpted out of highly polished, black granite, on which all of those who lost their lives during the war are inscribed.  This is a stark reminder of how senseless war can be.  The names of more than 58,000 men and women are inscribed upon this slab of granite.  They will never be forgotten.  Being at this site on Memorial Day was a very poignant experience, as we got to see some of the men and women who did make it back home.  They were there to honor their friends who were not so fortunate.  I respect the sacrifices that all of these people made to serve a country which often did not welcome them back home with open arms. 

The Vietnam Memorial

Amanda and I were also able to visit the World War II Memorial.  This is a beautiful place, where one can’t help but reflect on all the people who fought to liberate Europe and other parts of the world from the evils of the Third Reich.  I am glad that we were able to be there to see these sites on Memorial Day, a day which Americans honor those who have died for the cause of freedom. 

I think one of the places that everyone should visit while in Washington D.C. is the U.S. Holocaust Memorial Museum.  One must visit this place to keep the memory alive of those  who died under the evil oppression of Adolf Hitler.  I am dumbfounded that there are still people who deny that these events ever took place.  Hitler and the Nazis were proud of what they were trying to accomplish and therefore were pleased to document the atrocities which they were committing.  There is no denying theses facts.  Over six million Jews were killed because they were thought sub-human. 

These two pictures speak for themselves

Being a person who is disabled, it also infuriates me to know that I would have been included among those whom Hitler thought of being “less than human.”  This was a shameful time in history, where many lives could have been spared, if the world would have not turned a blind eye to the suffering of those in Europe.  This includes the United States, who denied entry to thousands of Jews simply because we didn’t want to deal with an influx of refugees who needed a safe place to live.  It is shameful to know that genocide is still taking place in different parts of the world.  I strongly believe that every human was created in the image of God.  Therefore, we should treat each other with love and respect.

As often happens when I am in a city in which I am unfamiliar, there are those who do live up to the standard of treating others with love and respect.  I had many people willing to help me as I wheeled my way throughout the city.  For instance, as I was rolling along, making my way to the Lincoln Memorial, I was asked if I needed help getting up a rather steep incline by a woman who I assume was just resident of Washington D.C.  This woman appeared to be out for a jog, but she took some time away from her run to push me up a hill and into the area where I was able to catch the elevator up to see the statue of Abraham Lincoln.  I don’t know this woman’s name, but she showed me compassion, to which I was very thankful. 

Washington D.C. is a very accessible city to those with disabilities.  Every metro stop had an elevator down to the subway.  Likewise, every train was even with the platform, which made rolling into the train car very easy from my wheelchair.  Moreover, most, if not all of the monuments and museums have ramps or elevators, which make access very easy.  Finally, the city busses, which are free for everyone to ride, all have ramps which allow easy access for wheelchair users.   

The Metro system in Washington D.C. is top notch. Plus, each tunnel reminded me of my dad’s workshop as I was a kid. They all smelled like the welding rods he used. I am sure this was from the hot wheels of the trains running along the electrified tracks.

  One final event that made this trip so memorable was being able to visit Arlington National Cemetery, where many fallen soldiers are buried.  Arlington is also home to the gravesites of John F. Kennedy, along with his brother Robert F. Kennedy.  However, the most moving part of this cemetery is the Tomb of the Unknown Soldier.  Amanda and I were fortunate to visit the cemetery on Memorial Day where the Vice President of the United States, along with other dignitaries spoke, honoring those who have died fighting for the United States around the world. 

Vice President hiding behind a teleprompter during the ceremony at Arlington National Cemetery on Memorial Day 2019.

The Orphans

“Call it a clan, call it a network, call it a tribe, call it a family: Whatever you call it, whoever you are, you need one.” – Jane Howard

I always wanted to marry an orphan.  Little did I know, so did my wife.  We both had the same motive for wanting to marry an orphan.  Neither one of us wanted to be obligated to spend holidays with another family. Amanda and I have been married for nearly seven years and I think there are times when we both still wish we had married an orphan.

My wife grew up in St. Louis, which is approximately 250 miles from where we now live.  Therefore, when we travel down to St. Louis, we are in the car for at least 4 hours each way.  Throughout most of the trip the only thing you see are corn fields, and the occasional truck stop. 

Going to family functions in St. Louis is quite different than the ones to which I am accustomed.  Each of Amanda’s parents are one of eight children.  Therefore, there are dozens of aunts, uncles, and cousins.  I love my in-laws very much.  They are both very giving people.  In the dictionary next to “hospitality” are pictures of Amanda’s parents, Dan and Judith.  At each major holiday they invite everyone over.  There are usually 40-50 people at every gathering. 

I believe the first holiday that I spent with Amanda’s family was Easter.  I was shell-shocked to be with so many people under one roof.  This is because while I was growing up my family gatherings were much smaller.  However, I have grown used to these large gatherings.  I enjoy playing games, eating, and just spending time with everyone.  However, for an introvert like me, these events do sap my energy. 

Amanda’s first introduction to my family was at my 34th birthday party.  I think for her, it was hard to adjust to being with such a small group, where more attention was focused on her.  She was no longer able to blend into the woodwork.    

This Easter we will be spending time in St. Louis.  I just wish one of us had our pilot’s license so that we could fly down.  It would enable us to visit more often.  Amanda gave up a lot when she moved to the barren wasteland that is Northwest Illinois.  I know that she misses seeing her family.  However, I am glad that we met, because she is the perfect woman for me.  She is a kind and loving woman. 

I am glad that we both were willing to expand our horizons.  We both come from great families.  It has been fun getting to know Amanda’s clan.  Amanda’s dad is a great storyteller, and her mom makes some of the best cookies I have ever tasted.  I am thankful that I did not marry an orphan because I would have missed out on the love Amanda has shown me.  I too would have missed out on becoming part of a great family.