Dazed and Infused

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

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

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

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

The Patient Who Lost His Patience

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

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

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

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

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

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

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

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.

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.

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.

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.

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?

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”

Dimming of the Day

Amanda and I have been married for seven years. We are also coming up on the seventh year of living in the house we bought shortly after getting married. It is a house that has always been cozy and has always felt like home.

I am unable to do much of the maintenance around the house. For instance, I cannot clean out the gutters, mow the lawn, or shovel snow. These things have always bothered me. I feel like I am less than a man for not being able to do these things.

Our house was built in 1935. It is showing its age, especially on the outside. We’ll need a new roof soon. We could use new siding and new windows as well. Plus, our front porch needs to be be painted and restained. These are things that I worry about a lot. However, I know they will get done. There are many things that need to be renovated inside as well.

Despite all of the work that needs to be done we still love our little house. This old house makes me think of a song that I always tell Amanda is “our song.” The name of the song is “Dimming of the Day.” It was written by a musician by the name of Richard Thompson. However, the version that I refer to as “our song” was done my one of my favorite guitarists, David Gilmour. Below is a video of the song. The words fit perfectly as to how I feel about our house. Most importantly, it speaks to how I feel about Amanda. Please give it a listen.

Amanda would tell you that “our song” is “Silly Love Songs” by Wings. Don’t believe her. I despise that song!

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