Air

When I was in college I took a music appreciation class. I’ve always loved music. This class gave me an opportunity to explore various genres of music. For instance, we listened to quite a lot of classical music. Through this experience I gained an appreciation for the classical composer, Johann Sebastian Bach. One piece in particular of his that I enjoy is “Air on the G String.”

I heard this particular piece a couple of weeks ago. Since that day “air” is something that has taken on a quite a particular significance. That same day Our Little Fighter was airlifted from our local hospital to one over an hour away. He has a virus that led to an infection in his lung. Our house is just a couple of blocks from our local hospital. I heard the helicopter land and take off as it carried Our Little Fighter away into a world of uncertainty.

A brief time after the helicopter departed, an eagle appeared high in the sky. It circled our house a couple of times and then flew north. I was reminded of Isaiah 40:31, “But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint” (ESV). These are words that I have had to keep coming back to, especially since progress seems to be slow.

This past week, while Amanda has been keeping watch over Our Little Fighter at the hospital, I have been home with Little Boy. He has been keeping me entertained. This morning he put his fork behind my back during breakfast, proceeded to sit back down, then with a puzzled grin asked me where his fork was. Usually we play this game where he hides behind me and then I ask where he has gone. He will peek around my shoulder and say, “here I am.” Apparently, he is building his comedy chops. I love every minute of it.

We will wait upon the Lord, as He is the source of our true strength. No matter where life leads, God is in control. We will keep trusting Him to provide strength in our weariness. He already is doing so through the humor of a little boy. I am just hoping there are no forks in my bed tonight.

October 2, 2022 5

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.

August 30, 2022 6

One Little Victory

I am a fan of the Canadian rock band, Rush. One of the last albums they made before disbanding was an album called “Vapor Trails.” Perhaps, my favorite song from this album is “One Little Victory.” The material on this album deals largely with the healing process their drummer went through after some very dramatic losses in his personal life.

For example, the song “One Little Victory” addresses how hard it can be even living from moment to moment when you are experiencing periods of grief. In my struggle with depression over the last few years one verse from this particular song often comes to mind:

Celebrate the moment as it turns into one more/Another chance at victory, another chance to score/The measure of the moment is a difference of degrees/Just one little victory, a spirit breaking free

Sometimes it is difficult to see the forest for the trees, especially when your mind is clouded with the doubts of depression. Oftentimes, the only thing worth celebrating is a particular moment. Its these “little victories” that enables one to keep moving forward when the “big picture” cannot be seen.

I have been in the hospital for the last four days. Laying in a hospital bed for nearly a week can cause you to lose focus on the positives. Therefore, I have been looking for the “little victories” each day that will spur me on to getting back home.

For instance, tonight I learned that I no longer have to be hooked up to my IV unless the nurse is specifically running medications through for me. My veins, my kidneys, and my bladder are all thankful for the rest! It will be heavenly to go to sleep tonight not having to worry about accidently ripping a needle out of my arm! These “little victories” can feel huge at times.

Hopefully, within the next few days I can return home. I miss Amanda and our boys. Being separated from them is the hardest part of this ordeal. However, I am going to wake up tomorrow and look for at least one “little victory.” There is sure to be at least one.

August 27, 2022 2

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.

November 19, 2021 0

He Said, She Said!

It appears I will be going home today, I think. Modern, American medicine is something that I am still struggling to understand. I have had a doctor called a “hospitalist.” To my knowledge, this doctor is supposed to coordinate the treatment being carried out by a team of doctors. In my case, I have an infectious disease doctor and a podiatrist. To me the lines of communication between all three doctors should be open and collaborative. However, my observations have shown me otherwise.

The entire time I have been hospitalized, podiatry has just walked in whenever they feel like it and does what it needs to do. Infectious disease has been the same way. The hospitalist, on the other hand, doesn’t really seem to know what is happening with either department. I seem to be the middle man between them all. This is apparent when each asks me what the other has said. Isn’t this what a hospitalist is being paid to do? If so, I’d like my first paycheck by next Friday.

This is frustrating when all you want to do is go home. For instance, the hospitalist was in today and said he needed to check on whether antibiotics would be administed at home or if I would need to come in to the hospital each day to have this done. This is infuriating, seeing as how the hospital social worker told me yesterday that home nursing would be by tomorrow to administer my first home dose and then teach Amanda and I how to run it from there.

This all leads me to believe the hospitalist has read none of the notes in my chart, as there is an order in for me to be discharged. Plus, I am positive there is information about the establishment of home nursing care. Fortunately, I have a feisty nurse today that knows what she is doing and has read the notes in my chart. I still can’t figure out why a doctor who is supposed to be coordinating my care has not. Maybe, he just has chosen not to take the time.

I expect a standard of care when I am being treated for an illness. My nursing staff has been exceptional. The doctors on the other hand all have seemed to have checked out on me, which doesn’t instill a lot of confidence. I wish I could say this is my only experience like this, but it isn’t. If a generalist is going to be on staff then they need to have a firmer grasp on the information being provided to the patient. The patient should never have to play a game of “he said, she said” with the doctors. To me that is unacceptable.

It is nearly 1:00 p.m. and I am still waiting to go home, despite the fact that my daily dose of antibiotics have been administered. I’m not ordering any lunch, as I refuse to eat another meal here. I understand the discharge process can take a while. I am trying to be patient. However, as I have noted in past blog posts I am not the most patient of patients. However, am I really the patient anymore when I am being asked to provide the services of a “go-between” with my doctors?

August 7, 2020 2

100!

When I started writing this blog back in January of 2019, I wasn’t sure where it would lead. At first my goal was to focus on issues related to my disability. However, my life really isn’t defined by having spina bifida. Therefore, this blog has expanded to be a place where I can share my thoughts on current events, give insights on what living life with a disability is like, and just share humorus observations of the world around me. I hope you have enjoyed following me on this journey.

This particular post will be the 100th post that I have written. I thought in keeping with that, I’d create a list of 100 lessons that I have learned, observations that I’ve made, or opinions that I have formed. Every day there are new lessons to be learned and new experiences to be had. These are just a few of the things I have picked up along the way. Let me know if I have missed anything. Here is my list in no particular order.

100. Never take a hansom cab ride in New York City.
99. Never be afraid to try something new (except for that hansom cab ride in New York City).
98. Holding a grudge against anyone is pointless.
97. God will indeed give you more than you can handle at times.
96. Don’t ever give up. Things will get better. It might just take time.
95. Life is unfair.
94. Anxiety can make you feel like you need to do everything all at once. You actually don’t need to do this. Just slow down and take things one step at a time.
93. The smell of the air just before it rains is one of the best scents.
92. The smell of a baby’s head just after they have had a bath is THE best scent there is.
91. The love that a dog has for its master is one of the purest forms of love there is.
90. Losing someone that you love is one of the most painful things you can ever experience.
89. Working hard to achieve a goal is one of the greatest feelings that you will have.
88. Sitting outside in the winter in a place where there is very little, if any, light pollution and looking up at the stars on a clear night is something everyone should try at least once.
87. Going on a road trip with someone you love is a lot of fun.
86. Dorothy was right, “there is no place like home.“
85. Take time to pray every day.
84. Dirt tastes like dirt (yes, I have tried dirt before).
83. Beets taste like dirt.
82. Walnuts taste like dirt.
81. The taste of soap is not pleasant. (Yes, I have had my mouth washed out with soap. It was at church no less).
80. Cilantro tastes like soap.
79. Eating a bag of peanuts on a warm, summer day at baseball game is one if the most relaxing experiences there is.
78. Take time to listen to the stories that your grandparents tell. I am fortunate that I did. I will treasure these memories for as long as I live.
77. Learn about the things that have happened in the past. You can learn a lot from history.
76. You can never read enough books.
75. Learning to adapt to change is difficult, but it is well worth the effort.
74. Being a homeowner is both a blessing and a curse.
73. It pays to do things correctly the first time.
72. I’d rather have more time to do the things that I want to do in life than to make more money. Time is far more valuable than money.
71. There are still very kind people in the world. Many of them live in the U.K.
70. Listen to your parents. They know more than you do.
69. Do at least one thing you enjoy doing every day.
68. Never pray for patience. God just might answer your prayers in ways you don’t expect.
67. When working with others it is often best to let them speak first. You just might gain some new perspective.
66. Donuts are little bites of heaven.
65. Mashed potatoes are the best food ever!
64. Chick-fil-A is overrated.
63. Fountain Coke at McDonald’s is the best.
62. Hot McDonald’s french fries are the best.
61. The Blues Brothers is one of the best films ever made.
60. Somedays you just have to listen to the Beatles.
59. You will never get everyone to like you.
58. Pancakes made at home are better than you can get in any restaurant.
57. NASCAR is not a sport.
56. Everyone should make a trip to the ocean at least once.
55. Everyone should travel overseas. You will gain a new perspective on life.
54. There is nothing like a good night’s sleep.
53. Spending time in the mountains is one of the most peaceful things you can do.
52. Disney World is overrated.
51. Bacon tastes best when crispy.
50. Cats can indeed be needy (I live with two who are very needy).
49. Sunny days are the best kind of days.
48. Never have your eyes dilated on a sunny day.
47. You can’t properly eat Oreo cookies without a glass of milk.
46. Getting an unexpected package in the mail is better than gifts on Christmas Day.
45. No one has ever sang the National Anthem better than Whitney Houston.
44. No one’s instrumental version of the National Anthem has been better than Jimi Hendrix’s rendition from the Woodstock Festival in 1969.
43. September is the best month when it comes to weather, at least here in Illinois.
42. Rollercoasters are not fun!
41. There is no ceremony quite as somber as the “changing of the guard” at Arlington National Cemetery in Virginia.
40. Ken Burns knows how to make a documentary film better than anyone else. If baseball doesn’t start soon I might have to dive into his 23-hour epic on the sport.
39. Don’t ever try smoking.
38. Tell the people you love how you feel while you still can.
37. Sometimes you just need to eat a big, greasy, cheeseburger.
36. It is never too cold to eat ice cream.
35. Read to your kids when they are young.
34. Walter Payton is the best football player I ever saw play the game.
33. Hot dogs should never be eaten with ketchup.
32. Thanksgiving is the best holiday.
31. Christmas becomes less fun the older you get. However, I suspect this changes once you start having your own children.
30. One of the best sounds you can hear is a baby’s laugh.
29. Many of the best things in life are free.
28. Treat others the way you would like to be treated.
27. A soft answer often turns away wrath.
26. Sometimes it best just to remain silent.
25. Autumn is the best season.
24. Always apologize when you are wrong.
23. Michael Jordan was the best basketball player I have ever seen play the game.
22. Don’t argue about politics on social media.
21. Forgive others when they wrong you.
20. Don’t pour gasoline on a fire.
19. Voting for the lesser of the two evils still brings you evil.
18. Finish your work first then you can enjoy your play all the more.
17. You often get what you give.
16. Cynicism isn’t always a bad thing.
15. Always finish what you start.
14. Let your yes be yes and let your no be no.
13. Family is important.
12. Steak is best when cooked medium. Anything else and you cook the flavor out of it.
11. Help others when and where you can.
10. As long as you are alive there is always hope.
09. Nothing quenches your thirst better than water.
08. Admit your mistakes and learn from them.
07. Always tell the truth.
06. Don’t expect others to respect you if you don’t show respect yourself.
05. Every thing should be done in moderation.
04. Always say “please” and “thank you.”
03. You get what you pay for.
02. Fear can be a good motivator.
01. The love of a good woman is a very special thing.

July 13, 2020 0

Omphaloskepsis

As I’ve noted before in a previous blog post (see The Summer of Ryan), I enjoy the sitcom Seinfeld. I relate to the character of George Constanza, as I tend to be a bit neurotic at times. It is for this reason that my mind usually goes to extremes after I have had surgery. I worry that there will be complications that will delay healing, which has actually happened a few times after previous surgeries.

Today, I have had some chills and a low-grade fever. In truth, this is probably because I have become a little dehydrated. However, my mind instantly goes to the possibility of infection, despite there being no indications of this. Should I go to the ER, or should I just stay home? I often weigh these questions heavily. I also feel quite run down, but I guess that is to be expected a few days after having surgery.

It is difficult to be patient when you are the patient! I want to be back on my feet doing everything I could do a week ago before my gallbladder became my worst enemy. Despite this, I know that healing takes time. It is just a little frightening when your body is doing things it normally doesn’t do.

For instance, I had a blister inside my belly button that popped this evening. It almost appeared as if someone was trying to blow a bubble from my umbilical area. I was thinking this might be a new party trick that I could unveil at Christmas – “Step right up and watch me blow bubbles from my belly button!” I could even take this show on the road. I’m sure there is an audience somewhere that would appreciate my act.

Having surgery is nothing new to me. I have seen my body in much worse shape than it is tonight. However, the paranoia sets in when something unexpected happens. You’d think I would have learned by now to be more patient as the patient. However, at 42 my mind still wanders to the “what ifs.” What if I do have an infection starting? What if I will never be able to have another bowel movement? What if I feel like going to work on Monday, but I can’t get any pants to sit comfortably over and around my surgical wounds?

This is a busy time of year at work, and I am not there. How big of a stack of things are waiting for me upon my return? I would say probably quite a few.

These are all things that I will pray about. Life will go on and I am sure I will be back to my old routines soon. Until then I’ll continue to navel gaze. I’ll let you know if the bubbles keep coming. I am off to take my temperature…

Four statues which stand in the Louvre, depicting the fine art of naval gazing. I like the Greek word for this practice much better, which is “omphaloskepsis”

November 16, 2019 0

Patience – Part 2

Eventually the rest of the group caught up to where I was on the river and we continued on our way. At times the river’s current began to pick up, which made it a little more difficult to avoid obstacles that were in the water. However, I did fairly well dodging these logs, rocks, and small rapids. As time went on I was beginning to feel more confident in my abilities to make my way down the river.

After floating a few more miles, the group decided to take a break along a sandbar. Despite the fact that this was a July day, it was quite cool and there had been sprinkles of rain on and off throughout our journey down the river. It perhaps was not the best day to be out on the water, but we continued on after a brief rest.

As we got further down the river the current became a little more swift. Likewise, there were a few more rapids to navigate. By this time I was beginning to feel like I wanted this trip to end. Little did I know, it was actually just beginning.

As noted in part one of this story, I am quite inexperienced kayaking on rivers. So, as the current began to flow a little quicker, I began to feel uneasy. I just wanted to be out of the kayak and back on dry land where I could warm up a little. However, things were going to get a lot colder in just a little while.

More and more obstacles began to come into view the farther we got down the river. Lots of trees had fallen into the river, which meant we had to navigate around them. There were also more and more rocks to swerve around as well. At times there were only very narrow spaces to float through as we went along downstream. It was in one of these tighter spaces that the front of my kayak snagged a log that had become partially submerged. This was also a spot where the water was moving quite rapidly.

As my kayak smacked into the log, I was flipped upside down. Upon realizing what was happening I tried to grab ahold of my crutches, which I foolishly had brought with me in the kayak. Despite my best efforts they both shot away from me very quickly as did my glasses. So there I was submerged upside down in the river trapped inside my kayak. Fortunately, I was able to squirm my way out of the craft. I then swam up to the surface, where luckily I found a nearby sandbar.

I climbed out of the water in a daze not being able to see anything at all, as my glasses had quickly disappeared to the bottom of the river. The rest of the group came to see if I was all right. After assuring them that I was, they began to trudge around the river bottom looking for my crutches and my glasses. However, after searching for several minutes neither my crutches nor my glasses were found.

So, without being able to see anything, I hopped into a canoe with Amanda, while her cousin Doug took over piloting the kayak I had been floating in throughout the day. Despite having very little idea of what was going on around me, I still felt it necessary to be a “backseat driver.” Fortunately, Amanda did not whack me across the face with one of her paddles. Although, I am quite certain she felt like doing that at some point.

As we got to the spot where we were to climb out of our canoes and kayaks there was yet another obstacle for me to face. Without my crutches or my glasses, I would need to crawl several feet back to the car. So, there I was sopping wet, cold, and nearly blind. As I was drenched from head to toe, I decided to climb in the back Alice’s SUV and lay across some blankets that had been put down for me.

I can say without a doubt that the trip back to my in-laws house was one of the longest car rides I have ever experienced. On the way calls were made to various medical supply stores to see if they sold the type of crutches that I use. However, by this time, it was fairly late in the day, so no shops were open. This is when I remembered that I had a spare pair of crutches in the trunk of my car. I also had stashed a pair of old glasses in the glove compartment as well. So, once we got back to my in-laws house, I took a nice warm bath, cleaned the sand from all my cracks and crevices. Then I spent the rest of the weekend walking around on an old pair of crutches and staring through lenses that were a few prescriptions too old.

From now on I will always have a spare pair of glasses and some old crutches with me just in case I need them. I have also decided that I will stick to calm lakes and streams from now on if I want to go kayaking. However, I don’t think I have much of a desire to do that, at least for several more years. Finally, I will always be grateful for the patience of Amanda.

Oh, and one last thing before I go. If you are ever on the Meramec River in Missouri and you come across a pair of crutches, let me know, as I will forever wonder what became of those sticks of mine.

March 20, 2019 0

Patience – Part 1

“Patience is not passive, on the contrary, it is concentrated strength.” – Bruce Lee

My wife Amanda is one of the most patient people that I know. I am very thankful that God has placed her in my life. This is because I often test my own limits, and she is there to pick up the pieces. It is a great thing that we live right across the street from our local hospital, as we visit the ER at least once every six months. The reasons for our trips have varied over the years. One of the last times we were there was for a surgical incision that had split open and had become infected. This was probably due to me trying to resume normal activity too soon.

Perhaps one of the best illustrations of Amanda’s patience was during a canoe trip that we took a few summers ago with her sister Alice, and some of their cousins. This was the second canoe trip Amanda and I had been on together. The first one ended with me tipping over the canoe in which we were floating. Fortunately, it was pretty hot that day and we both dried off rather quickly. However, I think due to this experience, Amanda was a little apprehensive to have me float along in a canoe with her on our trip with Alice and the cousins. Therefore, I was exiled to my own kayak, which was fine with me, as I enjoy kayaking very much. The only problem is that before this second canoe trip I had never taken a kayak out onto a river. I had only ever floated in rather calm lakes.

Despite my inexperience kayaking on anything but a serene lake, we all set off down the Meramec River, which winds its way through various parts of Missouri. About five minutes into the trip I floated my way over to some rather large rocks that were near the bank of the river. I then extended my right hand out in order to grab ahold of one of the rocks, as I had gotten ahead of the rest of the group. Fortunately, just before I touched one of the rocks, I noticed that a snake was perched about 6 inches from my hand. I believe this was a pretty harmless snake, as it slithered its way into the river and out of my sight. However, this was perhaps a sign of things to come.

March 18, 2019 1