Oh Deer!

I’m quite certain that our new neighbors think I am insane. What else could they be thinking after this evening? I just came back inside from using a sledgehammer on a deer lawn ornament. This is a “piece” we inherited when we bought our new house.

There were actually two, however, baby deer fit in our trash can and was hauled away this afternoon. Father deer is too big to fit inside the trash can in one piece. So, I thought I’d break him up into little pieces using a sledgehammer. As I was doing this, I could see my neighbor in her kitchen preparing dinner. However, I am certain she was also keeping an eye on me.

When I do things outside I usually roll around in a wheelchair. Furthermore, I dislike wearing coats, even when it is cold. So, I was outside, where it is quite brisk. I was wearing a t-shirt and wielding a sledgehammer from my wheelchair. Yes, someone would come and get this deer if I asked. However, I’m stubborn and I would rather take care of it myself. Plus, it is fun to wonder what the neighbors might be thinking.

Father deer is now headless and sitting in our garage. If anyone tries to break in it might be enough to frighten them away, as it looks like a headless dog laying folded up on the floor. He has met his match. I will be back out tomorrow with my sledgehammer, and possibly a sweatshirt.

The Trash Bag Ladybug Monster

God usually teaches me humility in humorus ways. My latest lesson has involved showering. If you have been keeping up with my blog, you’ll know that I am currently undergoing treatment at home for a bone infection that I got through a wound in my foot.

I currently have an intravenous line in my right arm, through which Amanda administers antibiotics every morning. I also have a bandage on my foot that Amanda changes every other day. I am lucky to have such a loving wife that is willing to do this for me. However, she does like to have fun with me as well.

For instance, in order to shower I need to duct tape garbage bags around my right arm and left foot. This is to keep my foot dressing dry, as well as my IV line. The duct tape that Amanda chose for me has ladybugs on it, which look great with the black garbage bags. Once I am all suited up I look like the “Ladybug Trash Bag Monster.” I then “climb” into our shower, which is the size of a small phone booth. It is fortunate that my shower chair even fits in there.

Getting out of the shower takes a leap of faith, as I am never quite sure how I am going to stick the landing. This morning I gave myself a 9.0, as I did not fall. I also maintained pretty good form through the dismount from the shower chair.

After I am out of the shower comes the fun part, the removal of the bags. This involves ripping strips of hair off of my legs, and some hair from my right armpit. I am beginning to think I should just wax myself down. That way the agony of the tape removal would be lessened. In addition, I’d probably become more aerodynamic as I race through the house in my wheelchair.

Yes, I choose to laugh at these times. If I didn’t life would be a daily struggle. However, I know that God is there. Likewise, I know He sees my struggles. He uses these to keep me humble. I am often frustrated, but I take comfort in knowing God has never taken His hand off of my life. My duck tape with the ladybugs and those black trash bags are reminders that God has a sense of humor. He continues to care for me even when I fail Him.

On the Road Again

If you have followed this blog for a while you know that I ride a hand-powered trike. It is something that I enjoy quite a bit. However, I’ve not been out for a while, as I have had some back pain. The problems with my back have greatly limited my mobility over the past few months.

Fortunately, I am beginning to regain my strength. Today, I went for my first ride since last August, or so the app that I use to track my rides tells me. It is difficult to imagine that it was the end of August last year when I stopped riding. I struggled today to get back into a rhythm. However, muscle memory is a great thing. It was not long before I was gaining back some of my momentum.

It was a short ride today. I did just under 4 miles. Last summer my average ride was about 10-12 miles. It will be a while until I am back up to those distances. I think for now I’ll just focus on building up my endurance. These last few months have not been kind to my body. I’ve not focused on my health in quite some time. Working from home and leading a largely sedentary lifestyle is what led to my back problems, I believe.

I hope today was the start of turning things around and becoming more active. I know my mental health could use a boost. Plus, it is fun to watch all the people stop and just watch as I go by, like I am some being that has landed here from another planet. I am just a guy who pedals his bike with his hands. If you see me out, give me a honk. Although, I may not hear you, as I usually am wearing my headphones. After all, I do have to be on standby in case the Mothership calls me back to our landing site.

Me on my “alien craft”

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.

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.

Roger That!

In a few previous posts I have written about my time at Children’s Memorial Hospital in Chicago, Illinois.  It perhaps is a place that I could write dozens of stories about, as there were all kinds of people that I met there as a young boy.  I was exposed to individuals from various ethnicities, religions, and family backgrounds.  Children’s was a place that taught me that we are all people and that we should treat each other with respect.  It also was a place that showed me just how funny life can be. 

As I’ve noted before I was often at Children’s for extended periods of time.  During these stays I had the opportunity to experience things that other children my age would never experience.  For instance, there were times when naval recruits from Great Lakes Naval Station, which is just north of Chicago, would come by and visit patients.  I remember one time a particular recruit came to visit me.  He was a pretty good artist and he made a drawing for me.  This is a picture that I still have stored away somewhere.

When these young sailors would come by for a visit it would make me feel very special because they gave me their full attention.  I felt like I was important to them.  These feelings are something that I will never forget. 

I also had some interesting roommates along the way during my stays at Children’s.  One that often comes to mind when I think of those days is a little girl by the name of Courtney.  She rarely had family come to see her, which always made me feel sorry for her, as it can be terrifying to be in the hospital all alone.  This is especially true for a young child. 

It was around Easter one year when Courtney and I were roommates, and to help her feel better, my mother and father went out and bought her an Easter bonnet and a small purse.  These are two things that I am sure she had never had before.  When she saw them her eyes lit up as if they were the greatest things she had ever seen.  I can remember Courtney calling her parents and telling them about the gifts she had received.  It was heartbreaking to learn that just a few weeks later her brother had gotten jealous of the gifts she had received and proceeded to fill her purse with dirt.  I would like to know what became of Courtney along with some of the other people that I met while I was in the hospital.         

Despite the pain I was often in when I was in the hospital, the nurses and doctors always seemed to make things better.  I think this was because they knew how to treat children who were suffering.  Plus there always seemed to be plenty of things to do to keep one’s mind off of the pain.  For instance, you could make your way up to the ninth floor where there were a few arcade games to play.  Or, there were often magic shows put on by a local magician by the name of Danny Orleans.

Growing up I was a huge fan of Matchbox and Hot Wheels toy cars, and the gift shop at Children’s was always a treasure trove for these.  I can remember several times when I was hospitalized that my parents and I would go to the gift shop where I was allowed to pick out one or two Matchbox cars.  I still have many of these stored away.  They will always bring back great memories.     

Then of course there was the tutor who you went to if you were in the hospital for an extended period.  She was kind of a crotchety old lady who would look over her wire-rimmed glasses at you as she spoke.  You would think having to do school work while hospitalized would have been torture.  The tutor that I had while at Children’s made it all worthwhile though.  I am sure she had been a teacher in the Chicago Public School System since around the time that Al Capone ruled the city.  However, despite her gruff exterior she was actually charming in her own special way.  I think she had a good heart and truly cared for the children with whom she was working.  I just wish her memory had been a little sharper, because she never could get my name correct.  For some reason she always called me Roger, which to this day is one of the nicknames that my family uses for me.  I never really had the heart to correct her.  This woman, I am certain, has long since passed, but the memory of her will live on every time someone calls me Roger.       

Children’s Memorial Hospital in Chicago, Illinois shortly before it was demolished. Just inside those doors on the left were two stone elephant sculptures. I wish I could have gotten one of those before they tore this place down.

Bathroom Humor

“Life is a long lesson in humility” – J.M. Barrie

Have you ever just had one of those days where nothing seems to go as it should?  What do you do when faced with a day like this? Do you cry?  Well, don’t despair because we have all faced times like this in our lives.  One thing I have learned is that in order to get through life’s dreadful days one must have the ability to laugh at themselves and the situation.  This is something I learned in a rather unique way.

The day was May 24, 2000.  I had graduated from college just four days before and I was getting ready to embark on an adventure that would take my friends and me a few thousand miles from home.  We arrived at Chicago’s O’Hare International Airport at around noon to board a flight that was to take us to the “Land of the Midnight Sun.”  After making it through the check-in process at the airport we set off to our gate, where we discovered that our departure was to be delayed.  This, I thought, would not unfold into much of an ordeal.  However, as I was to learn later it is never wise to assume anything, especially when it comes to air travel, for as the hours passed and my anticipation of touching down in Alaska grew more intense, a horrific hand of cards was slowly being dealt in our direction.

After nearly a three-hour wait in a crowded airport café we were ready to board a flight that would take us on our first leg of the trip to Alaska.  The first part of our trip got underway and we were off to Seattle, where we would catch a connecting flight to take us to Anchorage.  However, due to our delayed departure out of Chicago we knew that catching this plane was going to be nothing short of a miracle, and this is where things began to get horrendously surreal.

Arriving in Seattle, we all ran to see if our flight to Anchorage had departed yet, and sure enough it had.  Consequently, the airline we had flown into Seattle on, offered to put us all up in a hotel for the night.  However, we were determined to get to our final destination.  To that end, we sprinted to catch another flight out of Seattle. 

Watching me “sprint” is not a pretty sight.  It is like watching a whale that has beached itself on the sands of some tropical island.  There is a whole lot of grunting and heavy breathing, but not much movement.  Fortunately, a man with a motorized cart came to my rescue.  However, as I was soon to discover, this gentleman did not speak English very well.  Add to this the fact that I did not have the proper gate number for our next flight and you have the ingredients for a potential disaster.  If it was not for the observant eyes of my fellow travelers I may still be cruising the corridors of Sea-Tac Airport with my affable, but very confused chauffeur.  Once we got to the proper point, my companions, who had run on ahead to the gate, flagged us down.

Boarding the flight, my mind began to think ahead to what would take place once we arrived in Alaska.  Would our luggage be waiting for us once we arrived there, or had it gotten lost in the shuffle?  As it turns out, this was to be the least of my worries.  Upon finding my seat, I realized that I was going to be stuck sitting between two very large people, something that may not have been a problem if it were not for my own size.  I placed my crutches in the overhead compartment, and then proceeded to squeeze in between my seat-mates.  Three hours of the most uncomfortable trip I have ever taken was just beginning.

Once I began to settle in things began to heat up, which is not surprising seeing as how I was sitting next to two people who were giving off enough heat to warm the entire plane.  This, added to the heat my own body was giving off, was just too much.  Just as I was about to scream in agony I remembered that I had an air vent above my head that would provide me with at least a small dose of relief.  Reaching up to turn the vent on I realized that it was broken.  If ever there was a time that I felt like screaming this was it.  I felt helpless.  Here I am about ready to melt and I cannot get any relief.  I had to think of something to keep my mind occupied or I was going to asphyxiate myself with a barf bag.

Being a geography buff I began to recite all of the state capitols in my mind, an activity that really did begin to take my mind off the fact that I was about a five-cent cab ride from taking my own life.  It was about this time that I began to faintly hear the call of “Mother Nature.”  How could this be?  I thought I had sweated every drop of liquid waste from my body, and here I felt the urge to visit the lavatory.  After working up enough courage to ask the rather large, and surly looking woman sitting next to me to get up so that I could get out, I proceeded to the bathroom.

By this time my bladder was quite full, so I decided instead of taking the time to reach up in the overhead compartment to retrieve my crutches I would just grab a hold of the seats as I went along to the back of the plane.  This I can tell you now was not too bright of an idea, for as I made the mile- long trek to the restroom I fell down in the aisle a few times.  Thank goodness the aisle was dark or I’m sure I would have had the other passengers questioning my sobriety. 

At last I finally made it to the restroom.  This, I soon found is kind of a misnomer, for an airplane’s bathroom is neither restful, nor is it very roomy, especially for someone that is carrying a few extra pounds.  I think a better name for these places would be “torture closets.”  If you need a visual aid to help you understand what I mean by all of this just watch the hilarious comedy “Tommy Boy.”  This movie does a very good job illustrating the horror that large people go through while trying to use the bathroom on an airplane.  This closely mirrors my own experience.

Once inside the bathroom, my bladder let go a little prematurely and my underwear ended up a casualty of this struggle.  Therefore, not wanting to go back to my seat with soiled underwear, I began to take my shoes and pants off so that I could discard my underwear.  This is where the real fun began!

Having a limited range of mobility made the process of disrobing very cumbersome and awkward, however, with all that was in me I finally got the job done.  By this time, though, my shirt had somehow gotten soiled as well so I ripped it off and tossed it in the trash.  I was very fortunate to have worn my jacket back to the bathroom, for this was now going to have to act as an impromptu shirt.  After what seemed like an hour I was once again dressed and ready to exit this chamber of horrors.

Going back up the aisle, I gave a repeat performance of pratfalls and grunts, until I finally arrived back at my seat.  To my relief the flight lasted only about another forty-five minutes before we touched down in Alaska.  However, the nightmare was not over.

Once we got inside the airport we discovered our luggage had indeed not made the trip with us.  So, there I was in a strange city, thousands of miles from home, with no underwear, wearing a jacket as a makeshift shirt.  After reporting our lost luggage to the proper personnel, we left the airport in a rental car and headed for our hotel.  We could finally get some sleep.  Luckily, the next morning our luggage arrived at the hotel, bringing an end to one of the most overwhelming ordeals of my life.

Next time you are having one of those days where nothing seems to be going your way just imagine that your are trapped inside the restroom on an airplane and compare that to your present circumstances, and I’m sure you will see most things will pale in comparison.  Oh, and one last thing, always make sure you have a clean pair of underwear with you at all times.  You never know when you are going to need them. 

“Life is a long lesson in humility.” – J. M. Barrie

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.



Blog at WordPress.com.

Up ↑