Punching Clouds

There are times when words or phrases I hear will get stuck in my mind. For instance, the other day I was listening to one of my favorite podcasts and the host used the phrase “willful incontinence.” The twelve-year-old boy that is still inside of me got a good laugh from that. My mind instantly began to wonder how I could work that into a blog post. My mission has been accomplished! But seriously, that is not what this post is about.

I’d like to share another phrase that came to me today as I was watching Our Little Fighter play on the floor. He has a little mat that he can lay on that has various age-appropriate toys suspended overhead. One of these items is a cloud with eyes. As I was watching Our Little Fighter, he reached up and “punched” the cloud. He reminded me of a boxer using a punching bag while in training. Furthermore, it reminded me that I too have a few of my own “clouds” that need a good thrashing.

Those of you who read my blog on a regular basis know I have been battling some health problems lately. With these have come some dark mental clouds. However, I am a fighter too.

I just needed a reminder to keep “punching” the clouds. They are small compared to the good things in life. You just need to have a childlike faith. I’m fortunate to have reminders of that on a daily basis.

The Dish Ran Away with the Spoon

I think there must be a special place where things go when we lose them. For instance, I have socks that are missing a mate. However, the real mystery around our house is where has our silverware gone?

When Amanda and I were married we received silverware as a gift. This set included twelve knives, twelve forks, and twelve spoons. I believe we still have all of the knives and forks. Spoons, on the other hand, are a different story. If I had to say, I think we are down to about six of those. Where did the spoons go?

We only have lived in one other house. I don’t think we left any spoons behind when we moved last October. Do we have a monster in the house who comes out at night just to eat spoons? Are guests pocketing them when they leave? Have I lost my ability to count to twelve? All questions I have pondered.

The case of the missing spoons is one life’s great mysteries. It is right up there with the disappearances of Jimmy Hoffa and Amelia Earhart. I am thinking about hiring a private investigator to track down the missing spoons. Where is Magnum P.I. when you need him?

Where do you think things go when we lose them? Will we truly ever know? What are you currently missing at your house?

Dazed and Infused

I have become an IV drug user. It was just a matter of time before it happened. Fortunately, I am not hooked on heroin or cocaine. My drug of choice is meropenem. This a powerful antibiotic that will be treating the osteomyelitis in my left foot. I will be giving myself infusions through a port in my chest for the next five weeks.

I also came home from the hospital with a wound vac on my foot. This device suctions to my foot and sucks any drainage that might seep from the closed surgical wound. The vac when doing its job sounds eerily like a velociraptor that is about ready to pounce. So, I am now basically a member of a chain gang that is being chased by a deadly dinosaur.

Steven Spielberg, if you are out there, give me a call. I have the story for your next summer blockbuster. Middle-aged man with spina bifida chained to a medical device that sounds like it is about ready to disembowel him. This movie will shatter box office records.

Who should star as the leading man in this story? If you have any ideas drop me a reply. I’m off to take a nap. Hopefully, I will dream of further details for this film. I can smell that Oscar now!

The Patient Who Lost His Patience

I surely must be in the midst of a nightmare. It is 1:45 a.m. and was just woken up by a nurse requesting that I “sit up” and “sign a consent form for surgery.” Oh, and while I am at, I also need to complete a “risk assessment for anesthesiology.” This couldn’t wait until sunrise for me to complete?

I am having surgery today. This will be my third procedure in a week. I have osteomyelitis, which is an infection in my bone. This past Wednesday I had a surgery to remove some infected bone from my left foot. Yesterday, I had a procedure to close the wound on my foot. This morning I will have one to put a port in my chest, through which I will receive IV antibiotics for the next 6 weeks.

Don’t let anyone fool you. Hospitals are not a place where one goes to rest. I actually have had very little of that since Wednesday.

I am quite certain I didn’t really need to fill out a risk assessment for anesthesiology. Especially, since I have done two of these with an anesthesiologist in the past week. However, I was too tired to argue. I could have asked to speak to a supervisor, but it is too early for me to put up a struggle. So, I signed the consent and completed the assessment.

I wonder if nurses are even made to play the patient while they are in school? If not, perhaps they should be. For the most part I’ve had very empathetic nurses this past week. However, there have been a few who could learn some things about patient care.

Having been in and out of the hospital quite a lot over my 45 years, I have seen it all. Perhaps, I should start a side hustle as a “professional patient.” I could consult with hospitals as to the quality of the care they are providing.

However, for now my patience as a patient has petered out. I am actually looking forward to surgery. Maybe I will get some sleep in the operating room. If not, I might need to conduct my own “risk assessment” with the anesthesiologist.

Indestructible

The other day someone told me that they thought I looked like Superman. I must be honest, I did feel flattered. Superman has always been my favorite superhero. I’d love to be “faster than a speeding bullet,” and “more powerful than a locomotive. Likewise, I’d love be able “to leap tall buildings in a single bound.” However, the best part about being Superman is that I would be indestructible.

The older we get the more fragile we tend to become. My disabled body is more susceptible to the ravages of time and place. For instance, I am currently dealing with a wound on my foot. This has been a chronic issue for at least the last ten years. Having no feeling below my knees is perhaps one of the most challenging aspects of having spina bifida. Indestructible, I am not. I am no “Man of Steel.” This is probably just as well, as I’d probably not look very good in tights or a cape.

If you could be a superhero, who would you be? What superpowers would you like to have? Leave me a comment and let me know. I am off to defeat the hunger pangs of a snorting infant. That is one superpower that I do seem to have these days.

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.

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