Providence

My life is but a weaving between my God and me. 
 I cannot choose the colors 
He weaveth steadily 
Oft' times He weaveth sorrow;
And I in foolish pride 
Forget He sees the upper 
And I the underside.
Not 'til the loom is silent 
And the shuttles cease to fly 
Will God unroll the canvas 
And reveal the reason why.  - Corrie Ten Boom

I believe in the providence of God because of one place. That place was Children’s Memorial Hospital in Chicago, Illinois. On March 13, 1977 I was born with spina bifida and hydrocephalus, two conditions that would lead me to spend several weeks at a time at Children’s when I was a young boy. I was born in a small town called Sterling, Illinois, which is just a couple hours west of Chicago. Soon after my birth I was rushed by ambulance to Children’s Memorial. From this point, into my early teens, Children’s was often my home away from home.

I learned a lot about life during my stays at Children’s I began to see life from a different perspective. From an early age I saw how joyous life can be. I also caught glimpses of just how tragic it can be as well. For instance, I met a boy there during one of my stays whose mother had set him on fire. This boy’s name was David. He and I became friends while we both were staying at Children’s.

David was there getting treatment for his burns. I was there being treated for a case of osteomyelitis, which is an infection of the bone. David used to push me around the floor of the hospital where we both were staying. He and I would talk about the things kids our age typically talk about. However, there were also serious conversations. It was through one of these more serious talks that I learned just how difficult David’s home life was for him. His mother was a drug addict, who set him on fire one night when she was in a drug-fueled rage.

Despite his circumstances, David was a very empathetic person, who seemed very kind to others. He certainly treated me well and we enjoyed spending time strolling the halls of “three-west.” This was one of the best floors to be on if you were staying at Children’s because the nurses were so much fun. One such nurse was named Augie. She was a very kind and loving woman.

One afternoon I was given permission by one of my doctors to leave the hospital for a few hours. Augie, my mother and I, then went to the Lincoln Park Zoo, which was several blocks away from Children’s. It was an afternoon that I will never forget. I had been in the hospital for several weeks, and it was such a joyful experience to get out into the fresh air and soak in the sights and sounds of the zoo. Plus, it was fun spending time with Augie, as she loved to laugh. It was an afternoon where I was allowed to forget about things and just relax.

Many of the doctors and nurses at Children’s were so kind. They were people who truly knew how to care for children. I had the privilege of meeting individuals from all walks of life while I was at Children’s. My orthopedic doctor, Luciano Dias, was from Brazil and was fluent in both English and Portuguese. My urologist was a short, Jewish man named William Kaplan. I can say he is the first doctor that invited me in to his house only to have me urinate in the entryway. However, that is a story for another time.

My favorite doctor of all was my neurologist, Dr. David McLone. He was such a kind and gentle man. He was one of the first doctors to treat me when I arrived at Children’s shortly after my birth. Dr. McLone was the one who told my parents to take me home and love and treat me as they would any other child. I believe it was this advice that has led me to not look at myself as someone who has a disability.

You might ask what does all of this have to do with the providence of God. When I was born in 1977, not much was known about spina bifida and hydrocephalus. However, all three of the doctors that I mentioned above were physicians who were on the forefront in the treatment of spina bifida at this time.

For instance, Dr. Dias was a pioneer in some of the surgical procedures that have allowed me to walk. In fact, the picture of me that appears on the very first post of this blog is from a medical journal that details information about a procedure that Dr. Dias performed on me that straightened my legs, enabling me to walk.

As noted above, I was born in a small town, which was just a two-hour drive from Children’s Memorial Hospital. In 1977, Children’s was one of the leading centers in spina bifida research. I was cared for by some of the leading doctors in the treatment of spina bifida. I also had parents who sacrificed their time, finances, and energy to insure that I received the best care possible. For the first year of my life, my parents drove me to and from Chicago each week. There is no way this all happened by just a stroke of luck. Children’s Memorial Hospital is no longer there on Fullerton Avenue in Chicago. However, it will always be a part of me. Likewise, it will always be a reminder of the providence of God.

Bob Avellini and me in the cafeteria of Children’s Memorial Hospital. Bob was a quarterback for the Chicago Bears from 1975-1984. One of the perks of being at a children’s hospital is that professional athletes and other celebrities would often stop by for a visit. If only this could have been Walter Payton! Oh well, I look pretty good in that hospital gown and that IV sticking in my arm.

March 11, 2019 0

Air Jordan

I’ve heard it said that one should never meet their heroes. I believe there is some truth to this, as it does diminish some of the mystique surrounding their persona. However, as a 14-year-old boy I did meet one of my heroes and it something that I will remember for a lifetime.

It was Saturday, January 11, 1992. I awoke at 9 a.m. and was hardly able to contain my excitement about the day’s events. I got dressed, did some last-minute packing, and then walked out of the house to get into the car. As the car pulled out of the driveway, my family and I were filled with anticipation as we began our drive toward Chicago.

Our immediate destination was the Hyatt Regency Hotel on Michigan Avenue in downtown Chicago. Upon our arrival at the Hyatt we were greeted by a doorman who took our bags and escorted us to our complimentary room. After depositing our bags in the room, we went off for a walking tour of the area and to get a bite to eat.

It was an enjoyable afternoon taking in the sights and sounds of the “Windy City.” Our walk took us a few blocks south of our hotel, before we stopped and ate lunch, which was also compliments of our hosts for the weekend. As we left the restaurant, we decided to go back to the Hyatt to rest up for the events that were to occur that evening.

At 5 p.m. we left our hotel room to go down and get a taxi that would take us to our much anticipated event. After a brief ride, we were there! We were standing outside the Chicago Stadium where my family and I were to be Michael Jordan’s guests for the evening.

I felt rather important as we entered the stadium through the doors which the players entered each night. While were waiting for our escort, we saw John Paxson and B.J. Armstrong enter and head toward the locker room.

When our escort arrived, we were given VIP passes and were led out onto the floor. How exciting it was to be walking right next to the court! On the floor the Luvabulls (cheerleaders) were warming up, camera men were preparing their gear for the night, and Bill Cartwright was practicing lay-ups. Soon we were joined by another staff person who worked for the Chicago Bulls. This individual escorted us down to the locker room.

As we were making our way toward the locker room, we walked past several other players and the Bulls mascot, Benny the Bull. He was standing just outside the locker room door. The one we were about to enter!

As we entered the locker room, my legs felt just like rubber because there sat Michael Jordan along with Horace Grant and Scottie Pippen. Michael greeted me with a handshake and there were introductions all around. We visited for a few minutes while Michael and the rest of the starting five signed some basketball cards and other memorabilia for me. Game time was rapidly approaching, so we had to return to the arena to find our seats. I was privileged to have a seat at the end of the Bulls’ bench.

Throughout the game a few of the players talked to me and made me feel like one of the guys. As the game ended, I realized that this was an evening I would never forget as long as I live.

Just this past week Lebron James surpassed Michael Jordan on the list of the NBA’s top career scoring leaders. There has been much debate as to whether Lebron or Michael should be deemed the greatest of all time. In my opinion there is no contest, Michael will always be the greatest. Now if I could just sell all of those unopened Wheaties boxes with his face on them that I have stored in my basement. Anyone interested?

Michael and me in the locker room of the Chicago Stadium

The letter from the “Starlight Foundation” confirming our invitation. The “Starlight Foundation” was the organization that granted me my wish to meet Michael Jordan. Those toll charges to and from Chicago have more than doubled now and I am sure it is probably closer to $50.00 to park at the Hyatt these days.

March 10, 2019 2

The Winter of My Discontent – Part 3

My roommate the first few nights was a gentleman in his early fifties who suffered from anxiety attacks. Therefore, he was unable to sleep unless all of the lights were on and his television was tuned to “Nick at Nite”. Thankfully, I had an abundance of pillows with which to cover my eyes from the light and my ears from the noise. However, this did not help the fevers to come down that I was still experiencing due to the infection that had weakened my body. After spending two or three nights in quiet desperation I was ready for a new roommate. Luckily, one was on the way.

My next roommate was an 88-year-old man who was having severe back pain and was unable to walk because of it. I thought he would be a welcome change to my previous bunkmate and he was for the most part. He was rather quiet and was heavily medicated most of the time and best of all he had no issues with anxiety.

The nurses that took care of me during my time at “Club Dread” were generally very efficient and very caring. However, there were a few people on the medical staff that I began to fear during my recovery. One of these people was a nurse who I began referring to as “The Bruiser,” as she was not the most gentle person. After a few days she began to refer to me as “Guy” so I thought the least I could do was reciprocate and give her a nickname as well. After having endured several sponge baths by this woman I felt as if I was in a prison camp. I was ready to pack my bags and return to the home front.

I was eventually allowed to leave the “Stalag” and was sent home with yet more antibiotics and enough battle scars to last me a lifetime. The wound on my backside had been left open so sitting down upon my return home was not much of an option. This also necessitated that a home healthcare nurse come to my house three times a week and change the bandaging on my wound.

A few days after Christmas I went back into the hospital to have yet more surgery. During this procedure my wound was stitched in a few places and then a device called a Wound Vac (which stands for Vacuum Assisted Closure), was placed inside my wound. It was composed of a sophisticated pump, hoses, and a monitoring system held within a portable compact case that weighed about 15 pounds. Its job was to suck infectious materials out of the wound while promoting the growth of healthy tissues. It proved to be a rather cumbersome device at times.

The tubing on the Wound Vac was all suctioned down airtight to the skin by means of a very sticky adhesive tape. This enabled the machine to create the vacuum, which in turn created all of the suction needed to promote healing at the wound site. If this adhesive was punctured or ruptured the Wound Vac would begin to make some very strange sounds.

Many nights I went to bed with the Wound Vac making noises quite similar to the sound a warthog makes when chasing down some prey. This was an indication that I had sprung a leak and that a patch job was in order.

Trying to find the leak was often times very difficult, yet other times it was very apparent where the leak was because the area would make a whistling noise. During this period I added a new talent to my repertoire. Being able to whistle with my butt was something that I thought I’d never be able to achieve.

Living with the Wound Vac was not something that I enjoyed. However, my cat at this time started to make a new friend. Most of the time the device would make a sound quite similar to that of a cat purring so it is easy to see why the cat would have developed feelings for the Wound Vac. One of his favorite activities was to sit and stare at the machine while it was sucking away. I truly think once the device was removed, he went into a period or mourning.

Another thing that was quite difficult to manage was all of the tubing that was involved. Many times I woke up during the night to discover that I was tangled and twisted up in the tubing. I wonder how I kept from strangling myself with all of it.

Walking with the device can also pose a bit of a problem. Having been born with spina bifida, a birth defect that has left me unable to walk without the aid of crutches presented all sorts of complications during this time. As I mentioned above the Wound Vac itself was about 15 pounds. It came in a “convenient” carrying case, which was a misnomer for someone who has to walk holding on to two crutches.

I found that strapping the case around my neck and wrapping the tubing around my neck like a snake worked well. That is unless the tubing got caught on something then I would almost asphyxiate myself. I felt like a member of a chain gang, shackled to a machine that only my cat loved.

Perhaps the great English author Alexander Pope said it best when he wrote:

Hope springs eternal in the human breast:

Man never is, but always to be blest:

The soul, uneasy and confin’d from home,

Rests and expatiates in a life to come.

Those months that I was recovering, I tried to stay hopeful that all things would turn out for the good. I believed that they would. However, my soul was uneasy at times and I certainly felt confined. However, I was able to rest on thoughts of being well again and of better things to come.

I learned some important lessons through all of this. First, don’t ever be so arrogant as to think that you have everything under control. Life can often produce challenges that you never anticipated. Second, due to the lack of sensation that I have in the lower part of my body, I always need to be on guard for any cuts or scrapes that might become infected.

My problems started with one little pressure sore. I should have been more cautious in caring for it. However, I felt I was invincible. My ignorance caused me a great deal of pain. Sometimes we have to learn things the hard way. I have the scars to prove it!

March 5, 2019 0

The Winter of My Discontent – Part 2

After discovering that I had a rather serious infection I went to the emergency room. The doctor there didn’t seem to think that the infection was too serious, despite the fact that some of my skin had turned black. He merely sent me home with a prescription for an antibiotic. What I did not know then was that a whole series of events was about to unfold that would have some very serious consequences.

I went home and began to take the antibiotics. The next day I went to see my family doctor and he too thought that the infection was not bad enough to warrant a stay in the hospital. I was doubtful of his opinion but decided to go home anyway and tried to suffer through with just the antibiotics. Another four days was spent trying to get over the infection. In the mean time I had completely lost my appetite and was unable to sit down because of the inflammation in my rear end. Likewise, a very foul odor began to emanate from the infection site. I wanted all of this to just go away. However, it did not and by Saturday I was back off to the emergency room.

Finally, things had gotten bad enough that the physician who was on-call in the emergency room stood up and took notice. An infection that had started from one little pressure sore on my butt had now tunneled its way into my groin area and into other parts of my body.

It was not long before I was wheeled into surgery where a surgeon removed a large portion of necrotic tissue from the left side of my rear end. Later the surgeon informed me that I had three different types of bacteria that had ravaged my body. Fortunately, the doctor was able to remove all of the infected tissue. After surgery I spent a week in the hospital surrounded by characters that seemed to be ripped from the pages of a Stephen King novel.

March 3, 2019 0

The Winter of My Discontent – Part 1

“Life is either a daring adventure or nothing at all” – Helen Keller

My winter of discontent crept up on me so subtly that I did not even realize what was happening until it was too late. The day was November 24, 2004. My brother, his family and I were on our way to visit relatives in Louisville, Kentucky for the Thanksgiving holiday. As we began our trip it was snowing and the wind was howling. However, the conditions were not so bad that we could not travel, or so we thought.

The first hour of our trip was quite uneventful. I began to work on a crossword puzzle book that I had brought along to pass the six hours that we would be in the car. A little while into this the roads began to get very snow packed and the traffic around began to come to a halt. This is when we began seeing cars in the ditch alongside the road. Certainly this was a warning of things to come.

As we inched ourselves along in traffic the number of cars that we saw off the road way began to increase. Darkness eventually fell and the traffic began to get heavier. At one point we decided that it had taken us almost an hour to move just a fourth of a mile. Should we turn around and return home or continue on this trip?

We decided to venture on at least a little further. Making our way onto I-74 just outside of Bloomington is an experience that I’m sure I will never forget. The road was very icy and consequently quite slick at this point. Headlights were the only things we could see while trying to get on the interstate. These headlights were coming from cars that were backed up for miles in both directions. It looked like something out of the movie Close Encounters of the Third Kind. We now were inside a real life horror movie.

As we sat on the entrance ramp to the interstate we could see cars behind us sliding around, trying to get at least a little traction on the icy pavement. We sat on this ramp for nearly at least an hour before traffic began to let up and we were able to move at a reasonable rate of speed. We were only half way to Louisville after nearly four hours into a trip that was only supposed to be six hours. Would we ever get there? I was beginning to think not. We finally made our way into Indiana where road conditions began to improve quite rapidly. At least there were no more cars in the ditch at this point. We had counted a total of 66 cars that had slid off the road during our trip through Illinois.

The trip through Indiana was rather uneventful as I think it usually is when you travel through the Hoosier State. This was just fine with me, as I had already had enough drama on this voyage to last me a lifetime. I was ready by this point to get out and just bed down along the road for the night. However, I eventually came to my senses and realized that this probably would not be the best course of action to take. So I continued bravely into that cold night.

We eventually made it to Indianapolis, a city known for speed and excitement, something this trip had seriously lacked. By this time all of us felt like we had competed in our own Indianapolis 500. Spirits had seriously dampened and I’m sure we were all ready to get some sleep. I certainly know that I was ready to find a bed and crash. However, we still had about two or three hours to go.

This time was filled with listening to my brother change the radio station every six seconds followed by occasional whimpering from the back where my niece and nephew were fitfully trying to sleep. I was beginning to entertain thoughts of climbing out my window and riding the rest of the way on top of the vehicle. Strapping myself to the luggage rack would have been a welcome change to my prison in the front seat. Again I came to my senses and realized that this would not be the best course of action to take. What the best course was I still do not know.

The miles began to melt away and we inched ever so closer to Louisville. We had finally reached the Kentucky state line, a sight that I welcomed with so much inner excitement. Never had I been so glad to be so far away from home. However, I knew that we were nearing our final destination. This was finally a goal that was within our reach. We were determined to not let anything more hold us back from reaching Louisville.

At long last, there it was, the skyline of Louisville. After ten and a half hours we had finally arrived. A trip that normally takes a little over six hours had taken us over ten hours. I’m sure we were all just a little excited to have reached our destination. I think some of us may have been a little confused as well judging by a comment I heard from my nephew Dalen. When we arrived he quietly leaned over and informed his sister Clair that when they woke up in the morning Santa would be there. I don’t know, maybe the trip had just taken so long he thought it was now Christmas Eve. It was an honest mistake that almost any five year old would make after having traveled for what seemed like an eternity.

After having slept rather well I woke up refreshed and ready for Thanksgiving Day, although I was a little disappointed that Santa had not made an appearance during the night. The day was spent watching football, eating until it hurt, and then falling in and out of consciousness until it was time to once again head off to bed. It is such a shame that this day only comes around once a year.

The rest of the trip to Louisville was spent visiting the sites, bonding with family, and listening to my nephew tell stories about dinosaurs and friends that he has had in his rather short life. My favorite story was perhaps the one of his friend Carol who died after eating what he called a “dirty cherry”. However, that was not the end of the story. Somehow this friend had a miraculous recovery and is once again among the living. I think perhaps the boy has spent too many hours on long car trips.

Saturday, November 27, is the day that we decided to return home. We left Louisville around six in the evening in hopes that my niece and nephew would spend most of the trip home sound asleep. Fortunately, the roads were in excellent shape all the way home and the trip was rather uneventful. We arrived home about 1:00 a.m. I could hear my bed calling my name. Therefore, once I got my bags from my brother’s vehicle I climbed into my Blazer and headed straight to my own house.

It felt so wonderful climbing into my bed after having slept on an air mattress for three nights. As I lay there trying to go to sleep I felt this frigid wave of chills come over my body and I began to shiver quite vigorously. I thought this was strange, as this had happened to me the previous night in Louisville. Despite this I eventually fell asleep.

The next morning I woke up and began to get ready for church. I was getting set to climb in the bathtub when I sat down on the edge of the tub and realized something felt odd. It was very uncomfortable to sit down. The left side of my butt felt like a piece of iron and it was very warm. This is when I knew that the chills I had been having were very serious…

March 1, 2019 0

The Summer of Ryan

“Pride makes us artificial and humility makes us real.” – Thomas Merton

The “Summer of Ryan” began innocently enough. It was 2004 and I was employed as a teacher’s aide at a small, private school near my home in Illinois. Working at a school meant that I had summers off to do whatever I wanted. When school let out in May, I decided I was going to spend the summer focusing on things that made me happy. I declared that it was going to be the “Summer of Ryan,” which is an idea that I borrowed from Seinfeld. If you have never seen this television show there is a character by the name of George Constanza, who is quite self-centered. In one particular episode of the show, George declares that he is going to have a “Summer of George.” So, being rather self-centered myself, I thought I’d take a page from George’s book and indulge myself in the pleasures of a carefree summer. To this end, I bought tickets to several Cubs games and enjoyed traveling back and forth to Chicago.

I must have gone to at least a dozen games that summer. It was a thrill to be at Wrigley Field, taking in all of the sights, sounds, and smells of this historic ballpark. I had the pleasure of watching some of the greats of the game, such as Greg Maddux, play that summer. I also enjoyed listening to the vendors hawk their wares throughout the stands. It was a chorus of “HOT DOGS, HOT DOGS, I HAVE HOT DOGS HERE,” along with “COLD BEER, COLD BEER, WHO WANTS A COLD BEER?!” Of course, there was the ever-present organ music between innings as well. Finally, there were all kinds of great smells in the air, from cotton candy to warm, soft pretzels. It was truly a feast for the senses.

If only I had known that my “Summer of Ryan” would turn into my winter of discontent. If only I would have remembered the proverb that “pride goeth before a fall.” For you see, my arrogance in thinking that it was all about me led to a disastrous fall. One that would take years from which to recover.

See “The Winter of My Discontent – Part 1” for the next part of the story.

Wrigley Field – the setting for much of the “Summer of Ryan.”

February 27, 2019 1

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

February 26, 2019 2

I Don’t Want to be Your “Inspiration.”

“The most luxurious possession, the richest treasure anybody has, is his personal dignity” – Jackie Robinson

I understand the sentiment behind the words “you are an inspiration.” I have had many people tell me this throughout my life. I know that oftentimes these words are spoken out of sincerity. I can appreciate this. However, being called an “inspiration” is something that I have not, nor will I ever accept as a compliment. For you see, these words make me feel less than human. Having a physical disability does make me different, however, it does not make me any less human.

These feelings are ones that I have struggled with for a very long time. Many times I have asked God why he created me with a physical disability. There have even been instances where I have been furious with Him for placing me into a body that doesn’t work the way that it should. It is frustrating to deal with these limitations. I can honestly say I still question God as to why He chose me to live a life locked inside a body that is far from perfect.

One answer that He has given me along the way comes from a passage of Scripture. In verse three of the ninth chapter of John, Jesus heals a man that was born blind. His disciples then question Him as to why the man had been born blind. Jesus answers them by saying it was so the “works of God might be displayed” in this man’s life (John 9:3, New International Version). Perhaps, I too was born with a disability so that the works of God could be seen through me. God has blessed me with many things and for that I am thankful. In spite of my challenges I have a good life.

In conclusion, I feel as if people look to me as an inspiration for doing things that come naturally to any able-bodied person. Sure, there are things that are more difficult for me to do, however, I have learned to adapt to my surroundings. I should not be looked upon as an inspiration for doing what what is mundane. People are not given gold medals for taking out the trash, going to work, mowing the lawn, doing the dishes, or shoveling snow. My life is not heroic and I do not expect any accolades for living it. I am just Ryan, an often surly, 41 year old man who appreciates the things that he has been given.

February 23, 2019 2

Show and Tell…

“Courage starts with showing up and letting ourselves be seen.” – Brené Brown

Have you ever had that dream? The one where you are at school on the very first day and you are in your underwear? Well, let me tell you about my first day of kindergarten.

Like most kids who are going to school for the first time, I was apprehensive. Would I fit in with the other kids in my class? What would the other kids think about me? Would I make any friends? These were all questions that I had. However, my uneasiness was compounded by the fact that I was going to be showing up to my first day of kindergarten in a full body cast. For you see, I had undergone surgery on my hips shortly before starting school.

This meant that for the first several weeks of kindergarten, I would be confined to an itchy, sweaty, stinky, hunk of plaster. As you can imagine, being in a body cast limited my abilities in several ways. First, I was unable to move around the classroom like everyone else. Second, I was unable to sit down. Therefore, most days I was wedged between a table and a wall so that I would not tip over, as being in a full body cast makes ones body as rigid as a board. Other days I was placed on the floor on my stomach so that I could practice my ABC’s while laying down. I was rarely comfortable no matter what position I was placed in for the day.

Being in a body cast also limited my choice of clothing. Most days I wore a shirt with a towel pinned around my lower half. If only I would have had a kilt to wear! By this point you might be wondering what I did when it was time to use the restroom? Well, fortunately, the cast I was in had a section that had been cut out so that I was able to relieve myself when necessary. Little did I know that this would serve to be both a blessing and a curse on my very first day of kindergarten.

One saving grace throughout this whole ordeal was that my mother was my kindergarten teacher. Therefore, it was a little less embarrassing when it came time to use the the restroom, or when I needed to be moved around the classroom. However, it didn’t make it any easier when other kids would ask my mother questions such as, “why don’t you buy Ryan some decent clothes?” I guess my t-shirt and towel were not fashionable enough. Again, if only someone would have bought me a kilt! I could have possibly started a new trend among kindergarteners of the early 1980’s.

A kilt might also have spared me the embarrassment I experienced on that very first day of kindergarten. Remember that section that I mentioned earlier that had been cut out of the cast? The one that enabled me to relieve myself when necessary? Well, that section had a piece of padding that covered my private parts. This piece of padding was usually stuffed up inside the cast so that it would stay in place, especially once I had the towel wrapped around me. However, on this particular day everything came apart while I was leaning against a table. I also happened to be standing with my back to the rest of my classmates. Needless to say, I had a lot to offer for “show and tell” that very first day of kindergarten as I mooned my entire class.

Halloween of 1978. My brother Cory was a cowboy, while my brother Shannon went as Chewbacca. I think I was supposed to be a ghost, or I might have just been going as a body cast that year.

Is that a spacesuit or just another body cast?

Me just standing around eating while in yet another body cast. If only I could have been as enthused as my brother Cory was here. By the looks of it I think I might have been able to fit that whole chair in my mouth!

I don’t know what is uglier in this picture, the body cast or that couch that I am leaning against.

February 21, 2019 1

“Hey, What’s Your Problem?”

“When you assume, you make an ass out of u and me.” – Oscar Wilde

On a recent trip to Walmart I noticed an older gentleman staring at me. He then proceeded to yell in my direction, “HEY COME HERE!” When I approached him he asked me “what my problem was.” Assuming he meant my disability, I told him that I have spina bifida. He did not hear me the first time or the second, so I shouted, “I HAVE SPINA BIFIDA!” He shook his head, thanked me for letting him know and I was on my way. I left the store thinking, I hope that guy can rest easy tonight now that he knows what my “problem” is.

There have been many times in my life that I have had people make assumptions about me based on how I look. I can understand this, as I think it is a natural human tendency to make judgements based on what you see. However, it is never safe to assume anything about another individual, for we are all unique. We all have our own “crosses to bear.” Mine just happens to be a little more visible than the average human.

When I was younger, I used to have people talk down to me, assuming that because my legs didn’t work, my brain must not either. I think this led me to doubt myself in many ways. Did people really think I was “dumb” just because I wasn’t able to walk normally? These feelings made me want to just fade as far into the background as I could, so that I would not draw attention to myself. In other words, if people could not see me, then they could not make assumptions about me.

I have chosen to live this way most of my life. I am a rather reserved person, who often does not speak unless spoken to. Some people may view this as being conceited, but I often feel as if no one really cares to hear what I have to say. It is easier to stay “hidden” than to reveal who I truly am as a person.

Despite my insecurities, there are times when I want to tell people about all of the things that I have accomplished in my life. However, would they even believe me, or better yet, would they even care? Perhaps it is just easier to let them make assumptions.

As illustrated above, I seem to occasionally run into people that assume they can ask me questions that are quite intrusive. For example, when I have been out riding my hand trike, I have had people ask me if they can take it for a ride. On the surface, I understand this. My trike is unique looking. However, when I am riding it, the cycle is part of me. I simply cannot climb off and just sit on the ground while I let others take it for “a quick spin.” I feel as if this would be like me asking them if I can borrow their legs for a minute, as I just want to “try them out and see how they feel.”

I have spina bifida, which is a neural tube defect. This simply means that when I was in my mother’s womb, my spinal column did not develop correctly, which has led me to have paralysis below my knees. My legs work differently than the average human being, however, my mind works just fine. So, next time I am asked what my “problem” is, I may just have to respond with, “where should I begin, I am middle-aged, balding, overweight, I have a mortgage, and my house needs a new roof.” What kind of response do you think that would elicit?

February 20, 2019 1