Saturday Night Fever

One of the most difficult things about having spina bifida, at least for me, is the lack of sensation that I have below my knees. Along with this lack of sensation is also decreased circulation. Having no feeling in your feet can’t present various problems. The decreased citculation can magnify those problems.

For instance, I have to wear leg braces to keep my feet from flopping around aimlessly. Likewise, I can easily cut my foot and not even feel it. I’ve actually had a chronic wound on my foot for several years now. Unfortunately, this past weekend, my wound got infected. This is despite always keeping it clean and dressed with a bandage and antibacterial ointment.

Friday afternoon I began to feel a bit feverish. Likewise, chills also began to rack my body. At first, I thought this was perhaps just some dehydration, as I had drank a lot of coffee and very little water throughout the day. I woke up Saturday morning feeling a little better. However, that was not too last.

I thought as the fever and chills continued throughout the day on Saturday that I might have contracted a UTI. This can be a fairly common issue for those with spinal cord injuries as well. Therefore, I started drinking lots of water and cranberry juice. I then went to bed and slept all afternoon and night.

On Sunday morning when I woke up I was feeling a little better again. However, I think the Tylenol that I had taken the night before was merely masking my symptoms. As I looked at my foot as I do every morning. It looked angry. It was very red, streaky, and warm. I now knew the real cause of my agony. The wound on my foot was infected.

It looked fine on Saturday morning, but I now knew I needed to get the emergency room. Amanda dropped me off there around 9:30 yesterday morning. They drew blood, swabbed the wound for cultures, and ran two different IV antibiotics. I was then sent home six hours later with a prescription for two different oral antibiotics, which I am happy to say, seem to be working well. Today, I feel like my body has gone a few rounds with Mike Tyson in his prime.

My foot does look a lot less angry. I haven’t had any chills since last evening. In addition, I don’t have a fever at the moment. I am not sure I am out of the woods there yet, as it seems like once the Tylenol wears off the fever slowly creeps back up above normal.

I am sure I am in for a weekly visit with a wound care specialist now until my wound heals. At 43, despite having been a patient all of my life, I still don’t have the patience to be a patient. I think I might have prayed for patience one too many times. The only problem is, I still have not learned that skill. Perhaps, this will be the turning point. It is comforting to know that we live two doors down from the hospital. Especially, since I am there about every 6 months!

Progress?

Today marks the 30th anniversary of the passage of The Americans with Disabilities Act (ADA). This legislation gave equal rights to those with disabilities with respect to employment, transportation, public accommodations, government services, and telecommunications. I was 13 years old when the ADA became law. At that time I was too young to understand the importance of its passage.

I’m not a political activist. In fact, I shy away from politics as much as I can. Especially, today when there is so much that divides us as a nation. Likewise, I have always been a person that has adapted to my environment quite well. Therefore, when I was younger I did not feel impacted too much by having limited access to places and things.

I guess you could say I was used to living in a world that wasn’t made for a person like me. Moreover, for many years I felt I was too “normal” to fit within the disabled world, while being just disabled enough that I could never be totally accepted as “normal.”

As I have gotten older my mobility has decreased somewhat. With this I have come to realize just how important the ADA is for people with disabilities. Looking back it seems odd that a law like this was even necessary. Furthermore, the fact that it was passed just 30 years ago today is baffling. There are still far too many places that are inaccesible to those with disabilities. Likewise, according to recent data compiled by the U.S. Bureau of Labor Statistics, those with disabilities are still much less likely to be employed than those who are not disabled.

Working in social services I speak with many who are too disabled to work. Access to services for these individuals is often quite limited. I believe that those with disabilities are still often marginalized. Are those who are able-bodied fearful of those who are different? I believe many are, but I think there is more to the story as well.

People with disabilities need to advocate for themselves. For too long many of us have been silent. I include myself in this group. Relying on “big government” to cure what ails society is not the answer. We live in a time when a majority of politicians are more worried about mudslinging than they are in representing those who elected them. Yes, you can make your voice heard at the ballot box. However, you can also make your voice heard through social media, getting involved with an advocacy group, or work to educate those around you about the daily struggles those with disabilities face.

Living with a disability often means you feel as if you don’t belong. The world was made for those who can walk and talk without any difficulties. Barriers exist in everyday life that don’t exist for those who are “normal.” I wonder where we will be 30 years ago from now?

If I Could Be Like Mike

Last night I finished watching “The Last Dance.” This is a documentary miniseries co-produced by ESPN Films and Netflix. This 10-part series centers on the career of Michael Jordan. In particular, the film focuses on Jordan’s final season with the Chicago Bulls.

For those of you who may not know who Michael Jordan is, he was a professional basketball player who is considered by many to be the greatest to have ever played the game. He was a person that I idolized when I was younger. I was fortunate enough to meet him when I was 12 years old. This was a thrill of a lifetime.

Watching “The Last Dance” for me was a particular treat, as it brought back many of the memories that I have of watching the Chicago Bulls in the 1990’s. They were an exciting team to watch. I feel lucky to have seen them play live at the Chicago Stadium before it demolished in 1995. The stadium was aptly nicknamed “The Madhouse on Madison.” This is perhaps the loudest place I have ever been.

It held just a little over 18,000 people for basketball games, which is quite small compared to the stadiums of today. However, when the Bulls were playing the building shook as fans stomped their feet and roared with excitement. There were times when it seemed as if the place might just crumble into a heap as a result of the noise coming from the crowd. I relived some of this excitement as I watched “The Last Dance.” I also felt proud to be a fan once again.

Michael Jordan is human being. He has faults, as we all do. He has been criticized by some for his overly-competitive nature. It is true that he was cruel to some of his teammates and competitors. However, I appreciate the drive that he had. He sought perfection in everything that he did. This is something that I admire. It is a quality that I long to see in myself at times. I’d like to be driven enough to eat healthier, to exercise as I should, and to practice other habits that I know would improve my quality of life.

I am aware that it is unhealthy to compare yourself to others. However, I think we can look at others and learn from the examples they have set. Michael Jordan was focused on excellence in his professional life. He worked on improving his skills every day. This is something that I think we all can do. Jordan has not always been successful at everything he has tried. For instance, his foray into professional baseball lasted only a short time. Despite these failures, Michael Jordan never stopped striving to become better.

Despite his faults, Michael Jordan is someone that I look to as a hero. He played his sport to the best of his ability. Furthermore, he drove others to perform at their highest level. I find that inspiring.

Just a Little Vitreous Humor

This past Saturday my eyes started playing tricks on me. When I woke up I saw flashes of light in the corner of my left eye. These flashes were accompanied by floating specks and pin-point sized dots. Being the hypochondriac that I am, I thought perhaps I might be having a stroke. Despite this, I decided I’d wait to see if it would all just go away. Likewise, I consulted Google to see what my symptoms might mean.

I decided that I probably had a tear in my retina, or there was a chance that it was diabetic retinopathy. However, I tried to put these things out of my mind. I then spent the rest of the day on Saturday trying to rest my eyes as much as I could.

On Sunday, I woke up and the same flashes of light were there, as were the “floaters.” Again, I thought I’d wait another day to see if my symptoms would subside. However, by yesterday morning they had not. Well, the flashes of light had disappeared but the “floaters” were still present. This is when I decided I’d call my doctor. My doctor got me in almost right away.

Going to the doctor in the midst of a global pandemic is quite the experience. Obviously, you are required to wear a mask. After you fill out the paperwork they give you at reception, you are allowed to keep the pen. If I’d have known there was a free pen involved I’d have not hesitated for a second about scheduling an appointment. However, my favorite part of the day was the card I was handed before I sat down.

It looked like a flashcard that school children would use to practice their sight words. On the card was the word “dirty,” printed in nice block letters. I thought I smelled pretty good, but apparently not. Anyway, I was instructed to leave this card on my seat in the waiting room after I was called back for my exam. This was so the receptionist would be reminded to disinfect my seat.

Fortunately, nothing abnormal was detected during my exam. The doctor explained to me that the eye contains a jelly-like fluid called vitreous humor. This fluid fills the space between the lens and the retina in the eye. Apparently, as a person gets older the vitreous humour begins to liquify and shrink. The collagen and proteins that are present within the vitreous humor then become stringy and can begin to float around the eye. So, I basically found out I am becoming an old man who will see “floaters” in his eye for at least a little while.

Better still, I will be getting my first pair of bifocals in a few weeks. I am not sure how I feel about this. I am going to have a difficult time adjusting to them, I imagine. However, at least now I won’t have to take my glasses off to read things that are close to my face.

Hopefully, I won’t have to go to the doctor again anytime soon. Although, it might be a great way to start a new pen collection.

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.

Saturdays

For as long as I can remember, Saturday has been my favorite day of the week. When I was a little boy I’d get up early and watch cartoons. I’d grab a pillow and a blanket and bed down on the living room floor and lay in front of the TV for hours. After cartoons would finish it was on to This Week in Baseball. I loved to get a behind the scenes look of my favorite players each week. Perhaps the best part of this show, however, was the host, Mel Allen.

Mel Allen was a sports broadcaster who was born in Alabama, so he spoke with a distinct Southern drawl. His voice was warm and very welcoming. It made Saturday mornings more cozy hearing him deliver highlights from around the world of baseball each week. I miss those carefree days. However, there is still nothing like a Saturday morning.

As I write this I am drinking some coffee and enjoying hearing the sounds around the house. Amanda’s parents are in town this weekend. So, grandma is holding Baby Boy as he giggles. Amanda and her dad are putting a puzzle together at the dining room table. I am in the kitchen feeling nostalgic for my 1980’s childhood.

I am 43 now, the cartoons I enjoyed as a kid are still available through various streaming services. However, I have not been able to find This Week in Baseball. I’d love to be able to relive some of those moments from my childhood with Mel Allen. I suppose there might be some episodes on YouTube. I’ll have to see.

Hopefully, by the end of this month baseball will have returned to the airwaves, as players are preparing to begin a shortened season. It looks as if quite a few players are opting not to play. Therefore, I guess we’ll just have to wait and see if things truly get underway.

I wonder what an episode of This Week in Baseball would look like today. I am sure players would be wearing masks as they were being interviewed. Highlights from the games would show nearly empty stadiums, as fans would not be allowed through the gates to watch the action in person. The voice of Mel Allen would not be there, as he has been gone since 2013. I am glad I have memories of those simpler times.

Life is still good. There are so many things to be thankful for each day. However, I truly miss some of the things that I once knew and loved. Lazy Saturday mornings are still here. They would just be a little sweeter if I could hear the voice of Mel Allen coming through the TV speakers, while clips of Ozzie Smith performing some of his “wizardry” played alongside Mel’s commentary. Those were the days.

Scars

Scars are ugly, at least that is what many people think. I would disagree. After having undergone dozens of surgeries, I have scars. I have them from the top of my head all the way down to my feet. While they are not things of beauty, they are reminders of healing. What once was torn is now mended.

At one time I hated the scars that line my body. However, the older I get the more they remind me of the battles I have fought. These are battles I have won. I know this because I am here to tell about them. Having surgery no longer frightens me as it did when I was a child. I must admit I kind of enjoy the feeling of anesthesia. It makes you feel like you are leaving your body just as you lose consciousness. Surgeries to me are just another opportunity to find victory.

This victory comes from knowing that my body will heal, as it has dozens of times. I know there will come a day when my body will give up the fight. The wounds will no longer physically heal. Despite this I will still have victory.

I have faith that I will be given a new body once I depart my earthly one. This new body will be free of scars. There will be no more pain or sorrow to endure. No more battles will need to be fought. I will be healed for an eternity.

So you see, scars are not ugly, they are what is left after healing has come. Likewise, they can be badges of honor if you choose to see them as such. If you are in a place where you are feeling defeated, look at your scars. You may have physical ones, or they may be mental scars. Let them remind you of the healing that has taken place. You’ll live to fight another day.

One of my favorite songs is by a band called Rush. The song is titled “One Little Victory.” To me this song perfectly captures what it feels like to struggle against the forces we often face. It is a song that helps to motivate me when I feel I am losing the battle. It helps to remind me that I have scars but that those are merely emblems of victory.

“One Little Victory”

America

First, I am proud to be an American. I live in a land where I am free to voice my opinion on the things that matter to me. I also have the freedom to vote for those who I want to represent me. My opinion may differ from your’s, but that is fine. I can respect you even if I don’t agree with you.

I feel as if respect for others is something we have lost. One thing that doesn’t help is that we all have been given a “bully pulpit” through social media. The term “bully pulpit” was coined by our 26th president Theodore Roosevelt. He used these words to describe the opportunity that he had as a public figure to speak out on the issues of his day. Roosevelt used the word “bully” to mean something that was magnificent or glorious. Sadly, “bully pulpit” has taken on a whole new meaning today.

One look at Facebook shows just how unkind we have become to each other. This is epecially true when arguments begin over political issues. We all have been given a “bully pulpit” from which we can spew hate, prejudice, and ignorance. We have moved so far away from the principles of our Founding Fathers. For instance, in his farewell address to the nation, George Washington warned about the division that political parties would bring.

Washington words have become quite prophetic: “However [political parties] may now and then answer popular ends, they are likely in the course of time and things, to become potent engines, by which cunning, ambitious, and unprincipled men will be enabled to subvert the power of the people and to usurp for themselves the reins of government, destroying afterwards the very engines which have lifted them to unjust dominion.” These words were written in 1796. However, they describe what is happening to America in 2020. We are coming apart at the seams.

I will admit my political leanings are more in the conservative direction. However, I would probably best be described as a libertarian. I believe our government has become an overreaching “big brother” that should leave us all to pursue life and liberty. This should be done in a way that is respectful of our nation’s constitution. Likewise, it should be done in a way that respects the rights of our fellow Americans. Finally, we should all act responsibly.

Our constitution gives us the right to speak our minds. However, it doesn’t give us the right to be cruel to others. We have lost our civility. We have used our “bully pulpit” to bash those who believe things that our contrary to what we believe. This needs to change. We can disagree with someone without hating them.

This weekend as Americans celebrate our independence, let’s take a step back and examine what this truly means. Let us use our freedom for good. Furthermore, let’s try to regain our civility as a people. We are one nation under God. In 1858, Abraham Lincoln, who was running for the U.S. Senate at the time, gave an address in Springfield, Illinois.

In this speech Lincoln used the words spoken by Jesus in the Gospel of Mark, “A house divided against itself cannot stand.” Lincoln was addressing the issue of slavery, and the wedge that had been driven between those in favor and those who were opposed to this evil practice.

Today we are still divided, especially on issues related to race. However, that is just one of the many issues that separates us. I understand the passion with which people fight for the causes in which they believe. In fact, I admire the dedication individuals have in standing up for their principles. However, just because I believe one way doesn’t give you the right to demean me. Just as I have no right to demean you for your beliefs.

We should stop letting those in Washington D.C. divide us. It is quite apparent that many of our politicians are only out for their own interests. Our Founding Fathers never meant to create a system of “career politicians.” However, that is exactly what we have. Let us start using our “bully pulpits” for good. In the words of mothers everywhere, “if you have nothing nice to say, then don’t say it.” Today, let not only freedom ring, but let peace and civility ring as well.

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”

I Put a Spell on You…

I am an avid user of social media. Facebook, Twitter, LinkedIn, and Instagram are all social media platforms that I utilize for various reasons. For instance, I use Facebook to stay connected with family and friends around the world. It is also a way to help me promote my blog, which is why I use Twitter and Instagram. A little self promotion never hurts, or so I thought until today.

Instagram is a form of social media of which I am becoming increasingly wary. It is very difficult to distinguish between people who are genuine and those who are simply out to scam others. To illustrate my point let me relate an incident that happened this morning on Instagram. I often have people that request to follow me. After looking at their profile I usually accept their request. However, I think I will be more selective from this point forward.

This morning I accepted a “follow” request from a “young lady” whose profile looked “normal” to me. Just as soon as I accepted “her” request, “she” started sending me direct messages through the site. This is despite the fact that I have a statement on my profile which says, “I do not accept DM’s,” as these are usually from people wanting to sell me something. The messages I received this morning were about applying for government grants. I work for the federal government, so I knew what this “young lady” was trying to sell me on was a scam.

I asked “her” to stop texting me as “I do not accept direct messages on Instagram.” This person persisted so I let them know I’d be blocking them. This is when I was threatened. The individual that was messaging me stated, “If you block me, there is a doctor here that will bring harm to you!” I then said “that is fine” and proceeded to block this person. I’m not sure how I should feel about all of this. At first I was a little amused.

However, throughout the day I began to evaluate my use of social media. I do have a “love/hate” relationship with all of it. Seeing the bickering that goes on between people on Facebook just frustrates me. Getting messages from scammers on Instagram just annoys me.

I think it is time to cut back on my usage of both. No longer will I let these sites cast their spell upon me. Once baseball season gets underway again I’ll be back to posting my commentary on various happenings with my beloved Chicago Cubs. Until then, I think I’ll just maintain a low profile. That way the “witch doctor” will have a harder time finding me.