Tag: Spina Bifida

Agree to Disagree

Earlier this week I ran across a news article on Facebook about a man in North Carolina who has Down syndrome. According to the article, this individual was fired from his job at Wendy’s after 20 years. The reason given is that he did not have the ability to perform the duties of his position. So, why was he employed for 20 years?

Reading some of the comments on Facebook of this particular news story were nauseating. For instance, there was an individual who wrote:

Well, that sucks.

I totally understand both sides and I’m not entirely sure where I fall on the question of the disabled in the workplace.

It is a pain in the you know what to have to figure out what to do with a handicapped person on your shift. They can’t do everything that you ask of them but you can’t say that either because that’s deemed wrong and in some cases illegal so you have to beat around the bush with nonsense tasks and you still have to cover the work that isn’t getting done because dude is gimped out. They blow hole in your budget because they might work 8hrs but only get 4-5 hours of work done. I will say this though once you get them dialed in on a routine they don’t forget anything and I ain’t ever seen em slacking off either. So there is that…

Then there’s the altruistic side me that says everyone deserves an opportunity.

My views on the handicapped are incredibly unpopular and have been labeled extreme on several occasions. I’m a fan of aborting these folks in utero like what Greeland or Iceland has been doing for decades now. They don’t have to negotiate all these social conundrums they just pull the plug and start anew. I look at quadriplegic folks or the folks layer up in a bed for 60yrs. and I got to think that that’s just an awful thing to do to someone. I know I have expressed my wishes to my lived one’s incase I end up gorped.

I responded with the following:

Your views are not just extreme. They are idiotic. I am a disabled person who works full time. I am also married and have a family. I have a right to exist just as much as you.

This person simply replied:

Agree to disagree…

I was actually dumbfounded. Do I not have a right to exist because I am different? I am contributing to society. However, if an individual is not able to be a productive member of their community, should we just cast them aside? It is frightening to think that there are people in the world who still think like this. It is this line of thinking that led to the Holocaust.

5

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!

4

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.

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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.

4

A Love Letter…

Amanda and I will have been married ten years in August. I feel blessed to call her my wife for so many reasons. She is such a caring person who has taught me a lot about life. Perhaps, the most important thing I have learned is to love those who are broken.

I was born with spina bifida, which has left my body broken. Despite this Amanda loves me unconditionally. Through this I have learned to see beauty in brokeness. Amanda has an ability to see the potential in things that I would just toss aside. This has often led me to dip my toes in waters I would never have dared if left to my own devices. For instance, approximately five years ago we entered the world of foster care.

Amanda and I began our foster care journey by taking classes to become licensed foster parents. At this point I was very apprehensive. Having worked with troubled teens as a school counselor, I was unsure I wanted to open our home to children who were considered “broken” in some way. However, I learned that leaving my comfort zone was not a bad thing at all. I am so fortunate that I did, otherwise, I would have missed a wonderful opportunity.

When we decided to open our home to foster children we were told to not expect a baby. However, the first child that came to us was a three-day-old baby boy. He since has become our world. I never expected to love a foster child as much as I do Baby Boy. Even though he is not our flesh and blood, he is our’s nonetheless. I could not imagine life without him now.

When I was born my parents were not sure how long I’d live, or what quality of life I’d have. They simply brought me home, loved me, and raised me as best as they knew how. They, like Amanda, were willing to see past my brokeness and love me.

Two weeks ago Amanda and I were contacted and asked if we would be willing to take in another foster child. This time it is a six-week-old boy, who was born with Trisomy 18 or Edwards Syndrome. In short, this is a disorder that causes a disruption in the normal pattern of development. These abnormalities are often life-threatening even before the baby is born. Likewise, they severely limit the lifespan of those with this syndrome. We don’t know how long this child will live. However, this is a life that needs love. This “broken” baby needs a home where he will be showered with love. With much thought and prayer we have decided to open our hearts to this new life.

No one knows what will happen. However, we have love to give to this baby. We also have the love and support of family and friends. Whatever happens we have assurance from God that this is His plan for us and for this child. Once again we step outside of our comfort zone. However, we know that love can overcome brokeness.

One thing that God has taught me time and time again is that where He leads His grace provides. God’s grace is always sufficient.

4

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.

1

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.

2

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?

1

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.

6

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!

1

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