Time

Baby Boy had his first trip to the beach today. Amanda and I had originally planned to spend more time on the water while on vacation. I would have enjoyed laying on the beach reading all week. However, the weather didn’t cooperate the first few days. Likewise, soon after we arrived in Panama City Beach we found that there are not many easy access points out to the beach for those with disabilities.

This does not make me upset. I am used to living in a world that was not made for people like me. It was difficult to get to and from the water today, but I would not have missed it, as I got to watch Baby Boy’s reactions to waves lapping at his feet. I also was able to witness his curiosity as he touched the warm, powdery sand. He often tries to figure things out. It is fun to see the wheels turning in that little head of his.

I think Amanda, Baby Boy and I got a little too much sun today, as we all were a bit tired after we came back from the beach. After washing most of the sand off of us Baby Boy and I settled down for a nap.

One day at the beach was enough for us. I know it was for me at least. I’ll be washing sand off of my body and out of my mouth for the next few weeks.

We still have a couple days in Florida. It has been good to leave the routine of home behind. Likewise, it has been good to connect with family that we don’t get to see very often. It has also been an important reminder that time is fleeting.

Sometimes we let frustrations get the best of us and we lose sight of what is most important. Time is very precious. We shouldn’t waste it by getting hung up on things that do not matter in the long run.

I am glad I got to experience this time with family. We will have travelled over 2,000 miles by the time we get back home on Sunday. However, it was worth it to the see the world through a child’s eyes this week. We’d all be better off if we did this more often.

The Sunshine State?

After an abundance of rain on Sunday, Monday, and Tuesday we finally saw some sun today here in Florida. Hopefully, that will continue tomorrow, at least for most of the day. We made it to the beach, however, we didn’t swim. We just looked out at the water. It was a magnificent sight.

Looking at such a large expanse of water is always relaxing. To hear the waves hitting the shore is so serene. The water was much calmer today. There were a multitude of sun- worshippers lined up and down the beach that we visited. I think I almost prefer just to look out at the water than to actually get in and swim. This is due to lack of access for those with disabilities, and my dislike of getting sand in places where it doesn’t belong.

I wear leg braces when I walk. Likewise, I use a pair of forearm crutches. By the time I get down to the beach I am usually worn out, as there are usually either a steep set of stairs I have to climb down, or there is a steep embankment I must navigate in order to make my way to the water.

Walking in sand with crutches isn’t easy. The tips often sink down into the sand. Then once I make it to the shore I have to take my leg braces off, which makes me feel self conscious, as my legs are scarred and misshapen. I feel like the eyes of everyone are usually upon me. Just looking out at the water is easier, as I don’t have to expose myself as much to others.

We will see if I am brave enough tomorrow to venture down to the water and show my ugly, scar-riddled legs to the world. If not, I will be happy just to see the water from a distance. It will still bring me peace.

The Eye of the Tiger

Do you ever feel as if you have no fight left within you? Living life in a disabled body, especially when that body breaks down is overwhelming. I have been luckier than most in my life. My independence has not been as limited as others who are disabled. However, the past few weeks has left me feeling like I am down for the count.

Battling a bone infection is tough work. I’ve actually done it a few times in my life. It saps your energy. Being treated with heavy doses of antibiotics is not pleasant, as these drugs often kill the normal bacteria that grows within your gastrointestinal system. This often leads to unpleasant side effects for your bowels. Fortunately, there are probiotics that can reverse these side effects.

Struggling with physical ailments typically increases the anxiety, which often bombards my mind. Usually, my first reaction is to get frustrated, which leads to anger. I often question God why He allows suffering of any kind. I think sometimes it is a way of getting our attention when we are stubborn. This is especially true in my case. I am a very stubborn person, who often refuses to listen to others.

My stubborness led me to avoid treatment for a wound on my foot, which then became infected. This infection then entered my blood and bone, which if it had not been caught in time, could have killed me. This realization has been frightening. According to my doctor, I am still not out of the woods. I will be on IV antibiotics for the next 4 to 6 weeks.

Some days are better than others. Frankly, I feel like a boxer who has been knocked down one too many times. How much more do I have left to give? This is a question I have pondered lately. My body is tired. My mind is exhausted. My nerves are frayed. However, I am not ready to quit.

I came across a story tonight about a little girl who is in the hospital fighting for her life. She has multiple IV tubes running into her neck, which are delivering heavy doses of antibiotics to her body. I pray that this little girl has a lot of fight left within her. What I am battling is minor compared to what she is facing.

One of my favorite movies is Rocky IV. It is essentially a David vs. Goliath story, where a much smaller, slower fighter is tasked with defeating a giant, genetically engineered monster. Just before the final fight sequence begins this behemoth leans down into Rocky’s face and says, “I must break you.” I feel as if that is what this infection has said to me.

However, much like Rocky, I have the will to win. I am bruised and bloodied, but no one is going to throw in the towel. I have plenty of people in my corner, many of whom I know are praying for me. This giant will be defeated. Can you hear the opening chords to “Eye of the Tiger” yet?

What is There to Fear?

If you read my last blog post you know I have been struggling physically the last few days. I thought things were looking up until I went for a follow up with primary care doctor today. The infection in my foot appeared to be getting better. However, upon closer examination the wound on my foot had a sneaky, little hole that was leading down to my bone. Through this hole poured some of the infection. What this means is yet another surgery tomorrow.

As I have gotten older I have begun to question just how much more my body can withstand. I’ve had over 30 procedures done in the 43 years I have been alive. It seems there isn’t a part of my body that has been left unscathed by a surgeon’s scalpel. I have seen large chunks of flesh removed from my body, my head has been shaved bald, and I’ve had muscles removed from one part of my body and transferred to another spot.

I’ve had some great doctors. I have also had some fairly incompetent ones. The nurses, on the other hand, have all been terrific. They are the ones who really know what is happening. I’ll ask a nurse something before I ask any doctor. A nurse, even if they don’t know the answer, can usually do some investigative work and get you the information you need. Plus, they clean up all of the messes!

I don’t mind having surgery. It is nothing that scares me. I’m confident in the doctor who is performing the surgery, so I know I am in capable hands. There are great nurses around as well. Likewise, I know prayers are already being spoken for me. Therefore, it is in God’s hands. What is there to fear? I just hope they ask me what kind of music I want to listen to as I drift off to sleep!

P.S. I had my first test for COVID-19 today. It felt like someone shot onion juice up into my sinuses, as my nostrils begin to sting and my eyes began to water! After that I feel like I can face anything.

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?

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”

Brought To My Knees

I have been brought to my knees. I mean this in both a physical sense and in a spiritual sense. Nearly three weeks ago my back went out. As someone who has spina bifida, this can present some serious issues. I have been unable to walk normally, as the pain in my back has radiated down my right leg. This has caused my knee to frequently give out when I attempt to walk. Fortunately, after a round of muscle relaxers, anti-inflammatories, and rest my body is finally starting to heal.

The day after my back went out I was told I’d be working from home due to the COVID-19 pandemic. This was really kind of a relief, as I haven’t been able to drive myself anywhere due to the numbness and pain in my right leg. I have always crawled around my house when I am home, as that is how I get around the quickest when I am not wearing my leg braces. Therefore, crawling to my workspace each day has helped me to avoid missing work days. Why drive when you can crawl?

As this pain has brought me to my knees in a physical sense, it has also brought me to my knees spiritually as well. Very few of us living today have ever experienced anything such as the “shelter-in-place” orders that various nations, cities, and villages have enacted throughout the past several weeks. It is difficult to stay positive when the world appears so chaotic. For instance, I was just reading a report from an epidemiologist from Yale University. This particular scientist believes there will be far more illness and deaths in the weeks to come.

Just weeks ago, life looked very different for all of us. Families were making their plans for spring break, birthday parties had been planned, and schools were preparing to head into their last few months of the year. Then all of these things just stopped. The world just stopped. We all have started to look at life in new ways. I am no different.

I have always been quite an introspective person. I tend to look at the lessons that can be learned through my experiences. I firmly believe God has been teaching me that I need to step back and analyze certain aspects of my life. He is working to change some habits of mine that are unhealthy. I am praying that in the next few weeks I will learn to listen when God speaks to me. Now more than ever I feel the need to stay on my knees.

I am thankful that God’s promises are true. I have failed Him many times. However, God has never failed me. Likewise, I feel fortunate that He has used this time to bring me to my knees. Why drive when you can crawl?

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.

Boot Heel Fever

If there is one thing that frustrates me the most about having spina bifida, it is the fact that I have to wear leg braces. It is often hard to find shoes that I like that will fit over my braces. It is especially difficult when the orthotist (the person who makes said braces) gets it in his head that he should redesign the braces that you wear to put “less stress on your knees.” However, that is the situation that I found myself in a few years ago when I had my last set of braces made.

Growing up I had braces in all shapes and sizes. Some of these had buckles in places that made finding a decent shoe next to impossible. Despite this it seems as if I have always been able to make the situation work, no matter the style of braces that have been made for me. For years I used to go to Keller Orthotics. They are located in Chicago’s Lincoln Park neighborhood. This is an area of Chicago that I spent a lot of time in while I growing up, as Children’s Memorial Hospital used to be located in this section of the city. It is a neighborhood rich in history, especially during the years of the Great Depression when Chicago was ruled by the likes of Al Capone, Lester “Baby Face” Nelson, and John Dillinger. In fact, just down the street, a block or so from Keller Orthotics, is where John Dillinger was gunned down. It was in an alleyway just outside the Biograph Theater that this event took place in 1934. I remember passing this same alleyway numerous times, as my parents and I made our way to the brace shop for yet another fitting.

Keller’s was, and still is a family-owned shop, where I spent a few hours each year as a child. As a growing boy I needed to get new leg braces fairly often. My orthopedic doctor always referred me to Keller’s, as they were a shop that worked with Children’s Memorial to create orthopedic accessories for children who needed them. Peter Keller was the owner of the shop when I was growing up. He has since passed away. I remember him as a gregarious man with a fairly, thick German accent who always showed a genuine concern for those children with whom he worked. His shop turned out quality products that would last until it was time for a new pair. I think one of things I remember most about going in to Keller’s were the various autographed pictures of Chicago Blackhawks hockey players that adorned the walls of the examination rooms of the clinic. The picture of the late, great Stan Mikita was my favorite. He is one of the most legendary players that ever laced up a pair of skates for the Blackhawks. Stan’s name is one that figures prominently in the movie “Wayne’s World,” which stars Mike Myers and Dana Carvey.

Keller’s made my leg braces until I was in my early teens. Around the age of 17 I stopped going to Children’s Memorial, as I was no longer a child. Therefore, I had to rely on various other shops that were closer to home to make my braces. This is when things began to take a turn for the worse. My orthopedic doctor here in town began to refer me to other orthotists that were not as skilled in the art of making leg braces. However, there was nothing much that I could do about that, as traveling to Chicago to have my braces made was no longer an option.

Therefore, I had to begin settling for second-rate shops that made braces that were of less quality than those made by Keller Orthotics. This is especially true for the current pair of braces that I have. As noted above, I had very little say in the design of my latest braces. That is why I now am wearing a pair that literally have boot heels. How is a person supposed to find a decent pair of shoes when the leg braces they are wearing have a boot heel that juts out from the bottom? I am now relegated to wearing “old man” tennis shoes such as New Balance. Hopefully, one day soon I will find a shop that will listen to my input and make a pair of braces that suits my tastes. Until then I am stuck with my boot heel braces. Maybe, if I get a pair of bell-bottomed pants I can start a fashion trend amongst the disabled community. Boot heels and bell-bottoms might become the craze with those of forced to wear leg braces. I might just start a “Saturday Night Spina Bifida Fever.” Watch out John Travolta, here I come!

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