A goal of getting back…

After my rehab ranch resignation, my goal was to find normalcy, equilibrium, and balance in my new Floridian life. Unfortunately, in my newfound existence, I have yet to experience anything resembling physical peace and harmony, which I felt was in need. My life in Florida was wildly chaotic compared to what seemed like bumpy rainbows and butterflies in Ohio. However, my absolute happiness here trumps all the physical difficulties that had appeared since arriving in Florida.

The rehab facility had an accessible van, and Karen dropped me off and pushed me into my house as the ramp was still too steep. So, after my fifteen-day stay in the incredibly confusing medical nightmare called the hospital and rehab center, I arrived home. I wanted to return to normalcy, though I had experienced nothing in the realm of normal since coming to Florida. As Karen pushed me into my kitchen through the garage, I looked around, seeing everything I had only briefly experienced before the ER visit.

My office desk continued to be my uncomfortable sleeping space, which caused unexpected medical troubles. Sitting in a wheelchair twenty-four hours a day, seven days a week, is terrible for the human body in various ways. My legs were swelling like balloons at a kid’s birthday party, making me fearful of blood clots, which a doctor told me was the worst-case scenario. It was time for me to contemplate options for reducing the swelling in my legs and finding a better bed to rest my heavy head.

I am unsure what caused my muscles to weaken drastically, but I began periodically plummeting to the floor. These falls once again required me to call for that triple-digit rescue I dreaded and tried to avoid at all costs. My weakness was exhausting, making me fearfully hesitate and contemplate my every move. Again, I was overthinking every movement, making every transfer more risky and a fall more likely. I eliminated the idea of doing anything quickly wholly from my brain bucket, giving a new meaning to think slowly and move cautiously.

Another side effect of sitting in my wheelchair all day and night was that the muscle spasms in my legs became more frequent and violent. These vicious muscle jerks would thrust me forward painfully, slamming my chest into the table I was sitting at or even nearly throwing me out of my chair. The muscle relaxers my doctor prescribed were ineffective against these powerful leg convulsions. I found a strap that I used as a seat belt tying it off, making it unlikely that a muscle twitch, shift, or jerk would throw me from the chair again.

Thankfully, both physical and occupational therapy from the VA arrived a week after my return from my hospital horrors. First came an evaluation to test and find my abilities level, not wanting to push too hard or fast as that would be terrible for my MS. Next, they began asking about my overall goals for the sessions, and finally, pinpointing transfers of all types was my paramount priority. So we set a schedule for me to see PT and OT twice weekly for six weeks and then reevaluate.

To my readers, things may have appeared impossible, like the struggle was not worth it, as if there is no light at the end of the tunnel, but your thoughts are wrong. All tasks are a challenge, a big deal, and a significant struggle that I contend with daily, but these difficulties are manageable. You may not realize that for me, friends and family can take the wind out of the sails of this monster called MS. Camaraderie, togetherness and fellowship make the damage-causing MS beast impotent in its ability to ruin happiness and joy in my life. It does not matter where you are geographically, emotionally, or physically; strengthen and solidify your relationships. These individuals are your support system, which is essential as you will need them often for a healthy life. Family and friends are crucial weapons in fighting a chronic illness.

I needed things to get better, but life made things bitter. 

New Year, time for change… 

Now that we have rung in this New Year and flipped a digit to enter this new era, we need more. We should desire something to stand out from the crowd, as it is too easy to vanish into obscurity if we do not grow. No challenge should define us as it is simply a blip on our timeline and does not tell the world who we are. Every year, we should grab the tree of life and vigorously shake it with all the strength we can muster. So if you have a lot of power, shake, rattle, and roll until the branches crack like a tree in a tornado. On the other hand, if you have less vitality, vigorously shake the leaves and roar to the world I am here. We must not merely survive this game called life, but thrive like a cactus in the scorching desert sun.

Considering your limits is the key to finding the new thing that will change your outlook on life. You should stretch slightly past your comfort zone to prove that you can do more. Find something you have never done or are not particularly good at, as studies show, this builds your brain. Search out your neighborhood community center and look into taking some classes involving art or cooking. If it is age appropriate, find a senior center, check the schedule, and make new and possibly lifelong friends. There are plenty of events for the low and even mid-speed MSers if you will pinpoint and participate.

For those looking for high-octane options, there are a plethora of them from which to choose. Adaptive sports have become a massive industry, as no one enjoys being excluded because of their life’s limitations. We have come so far in technology that what was once impossible is now conceivable. Great minds have gotten together and figured out how to make things work correctly, specifically for the disabled. We have all heard the phrase; there is an app for that. We can now say there is an adaptation for that and be proud of how far we have come.

Adaptive sports include things such as surfing, kayaking, skiing, skydiving, and the list goes on and on. You can ride a bike with a handcycle regardless of your talent level and abilities. If you have the required skills, you can even go whitewater kayaking. If you are willing, it is not out of the question to snow ski in Colorado with the best of the best. Your willingness to act limits you only and what the imagination can create for these sports.

I have always said: do not tell me I cannot do something because, with time and effort, I will find a way to make it happen. My friend challenged me to do a 5K in my wheelchair, and even though others doubted I would complete it, I was the first wheelchair to cross the finish line. Some said that I could not do two and a half miles of swimming, yet I blew that challenge out of the water and swam eight grueling miles. There may be obstacles in your path, but you decide to allow them to stop you. The question becomes, how badly do you want it, and how much are you willing to sacrifice to accomplish the goal? So get off the couch and pick up your feet, cane, crutches, get behind your walker, or even sit in your wheelchair and do something new for the New Year.

Let no difficulty stop you from achieving your goals, disabled or not. 

How to spot a fake disabled person…(REMIX)

This holiday season, many have family visiting, whether from out of state, out of town, or closer to home. For this reason, I am reposting a previous blog to help ignite a fiery conversation discussing the topic below. This blog is about an issue talking about fake disabled people and how to deal with these fraudulent phonies with mock maladies. This conversation should spread across the globe as an understanding of the facts needs to be distributed with dinner table discussion or however your family communicates. I hope everyone has a beautiful and safe holiday season, and please come back and continue reading my blog series about my one-thousand-mile move from Ohio to Florida.

How to spot a fake disabled person…(REMIX)

If you are reading this post to find out the clues I can teach you so that you can spot the person faking a disability, then keep reading. For example, you saw a guy park in a handicapped space and walk inside unassisted, so you want to call him out. You might have observed a woman use a wheelchair one day and a cane a few days later, and you want to bust her. The truth is that you should LEAVE THEM THE HELL ALONE!

People with disabilities can have physical challenges that are not visible and cause struggles you could not even imagine. But unfortunately, sometimes, they get attacked by a self-entitled morality vigilante that assaults them verbally or worse. I have heard of these onslaughts as demeaning notes left on a car windshield or a vicious verbal violation that left my friend Lisa in tears for hours. This abuse was after she felt exceptionally jubilant because her illness had Lisa bedridden the previous four days, and she was finally in a bipedal propulsion position.

Just because you see a co-worker using a wheelchair one day and a cane the next only shows that disabilities change daily. The pain level or physical abilities could be high one day and drop like the stock market in a recession the next day. Likewise, when you see some guy park in a handicapped spot and walk into the building with no mobility aid, he could have a heart condition, breathing issues, or any other invisible ailment. These hidden symptoms can be as many and varied as types of fish in a lake, meaning: LEAVE THEM ALONE!

My friend Jim told me he let those fakers know he sees them and takes pictures to put them on blast by posting them on the internet. I quickly asked him what an individual with a disability looks like, and I stopped him without giving him a chance to respond. I explained how he might have good intentions but would probably ruin someone’s day because of his nonsense narking. Someone cannot easily spot a person with a disability in a crowd, like a guy wearing a fluorescent ball cap. Some of us with disabilities stand out because of our medical devices, like walkers, wheelchairs, or oxygen masks. However, many have unseeable disabilities that need your love and support, not criticism and condemnation.

The ignorance of society and how self-entitled people treat others so poorly makes me sad. So to all those individuals who do not have enough in their lives, making them want to criticize others, I say STOP! Live your life to the fullest and let others do the same because what you think you see is not what you actually see. If your life is that empty, find a hobby and spend every bit of your time controlling every aspect of the said hobby. Most importantly, since you know nothing about strangers’ lives, allow them the peace to live their lives as well. Everyone should make this a topic of conversation with friends and family, as the truth needs to be shared.

Control your life and leave others to control theirs.

Flexing the truth…

My next destination after being released from the hospital was a rehabilitation center approximately eight minutes away. The doctor sent me there because I was weak and had moved very little in my fourteen-day stay, causing my strength to dwindle significantly. They explained I would live at the rehab residence for two weeks and receive continual physical therapy. I should have stopped the plans when I later discovered the physical therapy would only be twice a week for an hour each session, but I thought I knew better.

Bill from the kitchen staff brought me a surf and turf dinner with lobster, New York strip steak, green beans, and freshly baked bread, or so I hoped. Unfortunately, this two-star hospital actually brought me a chicken casserole, a dinner roll, and a jelly roll for dessert. Upon taking my second bite, the driver, Jan, arrived to take me to the rehab ranch, reminding me while she stood hovering that there was no need to rush. I quickly threw the food down my gullet like I was back in Marine Corps boot camp while the staff assembled my stuff for my speedy split.

Although I like to be independent and self-sufficient daily, Jan needed speed to get me out to the van. So, before leaving, she pushed me to the nurses’ station to get my discharge papers, and we completed any last-minute orders. Then, rolling out the hospital door, we pulled up to a side load, professionally painted rolling advertisement for this rehab residence. Oddly, they strapped me down sideways in the accessible van, whereas I have always faced forward. As a result, I felt like I was riding side-saddle on a horse as it walked along; I stared to the right, not seeing where we headed or had been.

It was still daylight at 7:07 p.m. when we arrived at a square nondescript building that looked like my high school. Jan pushed me through the double doors, and everything looked like a school after hours, with hard surface floors and generic art on the walls. Yet, it was a relatively clean environment with the smell of an antique store and the faint aroma, as if they had cleaned twelve hours ago. Next, we walked past the kitchen, where everything looked like old stainless steel beaten down from years of heavy use.

When Jan wheeled me to my room, to an untrained eye, it looked accessible, yet to me, the tiny room was only accessible with significant help. Truth be told, I do not know how they got away with these awful amenities that were absolutely an accident waiting to happen. All the surroundings in my room looked dilapidated, and even the baseboard was coming out from the wall. Likewise, the paint on the walls looked old, dingy, and like it would come off the wall any day. Yet, the staff was amiable and offered me sugary snacks at 8 p.m. I try to eat healthily, so I graciously declined.

The following day, I awoke bright and early at 7 a.m. and heard the sounds of breakfast service as plates clinked together. I got up and dressed as the smell of bacon cooking and voices conversing filled the air and made me excited about a meal served at a table. Unfortunately, I moved slower than a herd of turtles stampeding through peanut butter, making getting dressed tricky. Luckily, there was someone to help me. However, when I entered the eating area, what I saw frightened me to the core, as it looked more like a nursing home than a rehab center.

There were plenty of older people with walkers, wheelchairs, crutches, and canes around the tables, which I expected. However, I could hear Susie; the orderly, tell Gretchen, the patient, that she could not stand and Bob, the orderly, tell Carrie, the patient, that she could not eat someone else’s food. I also saw Janine, the orderly spoon-feeding Gwyneth, the patient, as I sat and waited for my food. I sat across the table from an older woman named Dolly, who told me her life story and how she could not leave until they found her a place to live. This building did not say a place of rehabilitation, but screamed as if they crossed a nursing home and a mental hospital. Simply stated, I did not feel it was the right fit.

After eating my morning meal, I had to figure out who to ask about leaving because I felt uncomfortable in this place. As I opened the door to go, Lisa, the physical therapist assigned to me, was there, and I requested to see the decision-maker. Ms. Kaufman showed up so that I could plead my case and ask for a discharge, and after a handful of questions, she consented. Although I was happy that they allowed me to leave, I was a little fearful of the nightmares of what could have been.

The VA must have better options for rehab.

Seriously, is that your question???

The first four days of my hospital stay were torturous as I lay paralyzed with very little help. My visit was like living in the movie Groundhog Day, as each day was the same, though the staff changed every twelve hours. Accomplishing tasks like bathing, brushing my teeth, and eating hot food while paralyzed was a rarity, to say the least. So let me tell you some of my specific situations that show why this was such an awful hospital experience to avoid in the future.

Although I always had a jovial disposition and sought laughter from everyone I interacted with, most nurse visits were brief and strictly medical. Nurse Jackie, who came in and talked for a few minutes, surprised me with what seemed like bragging that the Hospital had a two-star rating. It perplexed her why they did not have a better rating, as if there was nothing of inferior quality. This talk was the first lengthy conversation with a nurse I had in several days, and it was the beginning of her shift, so I said nothing to oppose her theory. However, I did not see the rainbows and butterflies she saw in this medical facility, as there was more wrong than right in this environment.

On the twelfth day of my fourteen-day stay, there was still no insinuation, inference, or even implication regarding my departure date. So when Dr. Benes, my doctor of twelve days, entered the room, I perked my ears to hear any of her words of wisdom. I listened intently to what she had to say, hoping to pick up a reason for my issues and when I could head home. However, after hearing her following words, I was speechless as her question was, “what brought you here to the hospital again?” I was stunned at the ignorance of such a query from my doctor that it put me in a quandary.

Day thirteen: My worst experience with a nurse at this medical facility was with Night shift nurse Nikki, who was only interested in being in command. Health aide Amanda, a fantastic person, helped me into the chair next to my bed in the morning to help avoid bedsores. After dinner, Amanda reminded me she would help get me back into bed before her shift ended, as no one else would help. When I told Nikki that Amanda said she would help me get back into bed before she left, Nikki quickly said that Amanda was gone for the day. Then I told Nurse Ratched, I mean nurse Nikki, that I could hear Amanda’s unmistakable voice. I was not trying to call her a liar, but maybe I should have because I did not think Amanda left, but Nikki fervently reiterated Amanda was gone. I lay uncomfortably in the chair and waited until 1 a.m. when the only person who could help me get back into bed did. 

Later, nurse Nikki came to give me medication in an IV port when I told her the previous nurse shared that the port clogged. This statement let Nikki know she needed to insert a new IV somewhere else and remove the clogged one from my arm. Nikki replied that she would have absolutely no problem with the IV, as the other nurse obviously must have been new. Unfortunately, she had three failed attempts using the clogged port, but luckily did not blow my veins trying to prove she knew better than all others.

Every nurse and phlebotomist had told me my veins were perfect, yet night nurse Nikki would push my pain tolerance too far. I did not know how terrible things would go when Nikki tried to insert an IV and how badly it would hurt. Her first attempt was a vein on top of my left wrist, although apparently too complicated. She repeated four times in total that something did not go right and to let her try again. Blinded by the pain, it would have been nice to hear her say she was sorry because it felt like she was digging with both hands and a hacksaw. Empathy and kindness go a long way toward making the terrible treatment tolerable, but I received no apologetic words. 

When the left wrist did not work, Nikki moved to the top of the right forearm and found a tiny vein to chisel into. I felt scared because the previous vein was more prominent, yet her attempt to use it was extraordinarily torturous and unsuccessful. Typically, when giving blood, I am told I will feel a slight pinch, yet I think Nikki used a jagged pipe. I am a Marine, so I have quite an extensive and colorful verbal dictionary that I rarely used trying to better myself. However, her excruciatingly painful skills brought out a venomous vocabulary that I did not direct at her, nor did I raise my voice, but they understood the sentiment.

So the question is, can I or should I avoid this two-star maniacal mayhem medical facility in the future? Although, to be fair, I have heard many horror stories about most of the emergency rooms and hospitals around town. The next bit of chaos in my life was that when I left the hospital, they sent me to a Rehabilitation Center and it was not pretty either.

Pain and strength are not mutually exclusive. 

Gentlemen, start your engines…

I am reposting one of my earlier blogs in the blog series about my move to Florida because life is unexpected. I have had many unforeseen things that needed to be dealt with immediately, not medical. These situations have caused my writing to slip to the back burner of my to-do list, slowing my writing. So please enjoy this flashback from the blog series about my move from Ohio to Florida and its trials, tribulations, and even a few triumphs.  

Gentlemen, start your engines…

Someone told me I am too honest and share things I should not because they are personal and embarrassing. However, not only do I believe in total honesty in life, but those reading my blogs with multiple sclerosis know that what I am saying is true. In addition, the anonymity of the internet means no one knows who I am except for my name because very few people I know read my blog. That said, the big bad Marine in me is terrified of flight day, like a schoolgirl watching a horror movie.

Let me be clear, I am not afraid to fly, as I have ridden in a big steel bird 30,000 feet in the sky many times. Side note; the first time in my life I ever rode in a plane was an excessively primitive propeller plane on my way to boot camp for the US Marine Corps. It was an exceptionally scary ride with a terrifying destination. However, I am afraid the MS symptoms I have dealt with in the past year could unexpectedly rear their ugly heads at any time of the day or flight. So I pondered my prolific problem, wondering how to help my fear and stress before they become an ulcer and ruin an otherwise positive move, so far anyway.

The stress of thinking about this trip all night made my time asleep in groups of minutes, not hours. My alarm went off at Zero Dark Thirty, or 3 a.m. to be precise, as I needed as much time as possible to get ready. This transition is a one thousand-mile move that started only a few months ago, and I am making the trip today. I knew my mom and stepdad would wake up early also for a family reunion and would leave shortly after me. That makes four bodies moving around, trying to duck and dodge each other in a relatively small house.

I had an aide named Carrie scheduled on the date of departure to come in to assist me in making this a smoother and proper preparation time. Carrie came in at 3:45 a.m., whispering a cheerful good morning while requesting directions on how she could help. I had a carry-on suitcase and a large piece of luggage for being checked into the belly of the plane. Most of her work upon arrival was to pack the bags with the things I could not until the last minute. The first hour was Carrie putting things where I requested them to go and her trying to make sure everything fit correctly.

My first task was to get breakfast out of the way, as I knew my parents would prepare in the kitchen for their gathering. It is essential to start the day with a substantial breakfast, so I was hoping for a two-egg omelet, bacon, and orange juice for this momentous occasion. However, in reality, I had a bowl of frosted Shredded Wheat with powdered milk and my vitamins and prescriptions to start the day off right. So far, things were moving smoothly, which scared me more because of the possibility of what would go wrong later. My MS life had not been rainbows and butterflies up to this point, and I was still fearful of any MS flare which would ruin this trip.

I can do the stuff Carrie is helping me with, but there is a need for speed, and I do not want to think about failure today. Her next task was to help me get dressed in the clothes I would wear to the airport, making sure everything was acceptable to the TSA. I have a key ring on my jean shorts zipper so I can hold it easily, and the last time I went through the TSA checkpoint, the guy grabbed it. He must have thought I was trying to smuggle something because he pulled on it like he had found a lost treasure. This time I would make sure I announced every little item and explain what they are before the start of the pat-down.

There was not much left to do after she helped me get dressed except assemble all the other last pieces. Search and rescue for a few lost last-minute items were essential but short-lived, as the house was pretty barren and packed for Florida. We both sat quietly in my bedroom, she on the bed and me on my chair as I tried to catch my breath as my nerves were shaking like heavy metal guitar strings. This morning seemed to run smoothly, which terrified me as it felt like it was the “calm before the storm,” which meant the storm would be at the airport. 

Fifteen minutes before the transport was supposed to arrive, Carrie left, leaving a conversation between my parents and me. As Carrie stepped out the door, she turned back and let us know the transport vehicle was here early. My heart began pounding at galloping thoroughbred speed, and at that point, my parents grabbed my luggage to walk me to my transportation. I opened the garage door, looked out at the van, and whispered, “Okay, Scott, there is no turning back now.” Right then, I felt like a little kid dragged to school for the first time, and the torturous trepidation sank in. Goodbye, Columbus, Ohio. I have lived within your borders for 46 years and will always have fond memories of my childhood.

Every journey starts with one step.

The wonderful world of…what???

I woke up many times at about 1 a.m. by my calculations, although total guesswork would be a better descriptor. The gurney was still extremely uncomfortable as I lay in the hallway waiting for them to take me to my next destination. It felt like they were playing three-card Monte, getting moved so much, hiding me from someone. But who would they hide me from would be the question? I spent several hours in this hallway and a few more in that room as they shifted me time and time again like a giant game of whack-a-mole.

Startled from my slumber, they rolled me down the hallway, into an elevator, and to the fourth floor. I briefly sat in another hallway and was eventually taken into a room of my own where everything looked dated and well-worn. The phrase putting lipstick on a pig came to mind as I looked around; the room had extreme wear and tear on everything. However, they tried unsuccessfully to make the room look acceptable and presentable. I commented on the relatively small TV, which seemed like 40 inches, and they told me it was one of the larger TVs in any of the rooms, which was kind of sad.

Medical assistant Janet came in first, introducing herself and explaining that she would take my vitals. Minutes later, nurse Cindy had the prescriptions I brought, a few required medications, and still zero information or insights on my illness. It disappointed me that they held firm to the no-information rule they seemed to have, keeping my issues a secret, like who Batman is. Still extremely tired and hungry, I could not think straight to ask the questions and plead for answers they were unwilling to share.

The first morning, I woke up when Joe, from the kitchen staff, brought my breakfast, then quickly turned and left the room. I was famished and ready to tear into even hospital food like a starving badger, as I had not eaten since the previous day’s breakfast. But still paralyzed, I realized I had to wait until someone could help me eat, which devastated my psyche. Even with whatever degree of disability from MS I had dealt with in the past, I could always feed myself independently. Nothing rips away your manhood, dignity, and pride like being spoon-fed Jell-O, like some invalid.

Finally, medical assistant Holly came into my room to take my morning vitals and inform me of the procedures and how-to’s. Nurse Heidi entered the room next with the daily regimen of morning medication and vague information and clear-as-mud statements. I requested help to eat since paralyzed, and they told me they would act as soon as possible. Several hours later, I remembered scrambled eggs, bacon, and oatmeal were inedible when old and cold. This iced meal was after sitting on the bed table untouched for many hours, getting chilled as I continued to starve, waiting for someone or anyone to help.

On day two, after many hours of extreme boredom, Bill from the kitchen brought the midday meal, which sat taunting me like a mirage to a man in the desert. Next, medical assistant Carol entered my room to take my vitals, asking if I was going to eat, obviously forgetting I could not move my arms. Then, Nurse Sandy entered the room, and I hoped to receive some great wisdom about my ailments and why I was there. Sadly, Sandy gave me no new information, only sharing more vague statements made of smoke and mirrors.

Although the medical staff changed every twelve hours and personalities differed each time, the day-to-day life was the same, simply mundane. So on the fourth day, I was happy for something different when a wound specialist nurse came in to examine me for bed sores. She found several unopened hotspots where bed sores began forming, so she ordered an air bed to be delivered that day. This new-age technology would replace my current ancient, very used, highly uncomfortable bed and make sleeping almost enjoyable again. Within seven hours of deep slumber on this new air mattress, I was no longer paralyzed and happy as a clam. First, I needed clarification about what had happened, but I received no information. 

This three-and-a-half-day period of paralyzation, requiring help for everything, deeply devastated my dignity. But, the time frame also let me see how some people can have an extreme care for their fellow man and others show a lack of common human decency. In the medical field, you should give up the need to always be right and the courage to say you are not the most intelligent person in the room. I never want to see another September 11th, but I would love to see another September 12th as the togetherness and kindness shined through, which is something the human race needs.

Kindness, not critiques.

The corruption of common courtesy…

Although it was a five-mile trip, it felt like it took an hour to arrive at The Villages emergency room. As we entered the hospital, doctors and medical staff stood sprinkled around like salt and pepper on a dinner plate. I have heard that 911 operators, doctors, nurses, and many businesses barely survive unbelievably understaffed because of covid-19. However, this is not the case with patients, as there is no shortage of people needing urgent medical help. So how will this overworked and low workforce hospital deal with a patient with a confusing medical condition like multiple sclerosis? Not well.

Jan, the orderly, wheeled me into a room farthest back in the ER as if I had catchable cooties for all to avoid. Medical assistant Steve followed us into the room and began asking a barrage of questions he could have asked anyone on the street. Finally, nurse Kathy entered the room with a plethora of queries selected specifically for my situation to help them diagnose my mysterious complications. I shared that I had multiple sclerosis and had just replanted myself in Florida after a very stressful preparation and move only weeks before. Kathy explained she knew what I felt because she moved six months prior and agreed it was very stressful. I fervently pointed out that multiple sclerosis and stress are like oil and water, causing catastrophic consequences that have altered my life negatively.

Eventually, Jan and Kathy left the room while Steve stayed to complete more tests and tasks, trying to help solve my medical puzzle. As I answered his questions, I commented on how it was strange as I tend to talk with my hands in serious situations, but right then, they were as useless as a submarine with a screen door. Also, I was tired and had not eaten since breakfast, which was at six in the morning, and now it was seven in the evening. Finally, Steve put a call button into my hands and said push this if you have any problems, and someone will be right in. Before he left the room, I loudly proclaimed I could not move my arms, so how pray tell do I push the call button? That is when I learned why they were a two-star emergency room, as Steve said he would be right back.

I had fallen asleep waiting for Steve to return, and when I awoke sometime later, I had to go to the bathroom. Struggling for several minutes, I tried to prove to myself that I could use the call button, though with no success. Hungry and thirsty, I cried out for help, but my voice sounded small and distant, and they probably could not hear it if in the room. Finally, I gathered all my strength and found that if I made various sounds, they were louder than actual words. It felt like I had been making raucous attention-grabbing noises for several hours, although no one had yet entered the room.

Finally, my Saving Grace named Grace entered the room with a halo upon her head and a smile on her face. She not only helped me go to the bathroom but set it up, so I did not continue to have this cry-out-worthy issue. The one thing I could say about this hospital definitively is that their communication was terrible as they shared no information. Every medical person who entered my room told me absolutely nothing, including no insinuations, assumptions, or even wild guesses about my perdition condition. So when they began to move me, I was ecstatic, to say the least, hoping an explanation or two would come along for the ride.

They wheeled me through the central part of the emergency room to a hallway, where they once again left me alone. Still extremely tired, I fell asleep on this uncomfortable Gurnee, waiting for something they were unwilling to share, information. My stay in the emergency room was torturous and relatively brief, with very little explanation of my condition. I will end my current writing about this saga of my emergency room soon-to-be hospital stay because no more information is needed. So stay tuned for the next episode, where the hospital will become my new home for 14 days. 

Side note: Someone recently asked me, does the fact that you are in terrible shape physically make you regret leaving Ohio? In Ohio, I was not struggling physically but emotionally because the pandemic let me know who my friends were. Unfortunately, all the people I thought were my friends vanished like fog in the summer sun at a time when friends needed each other the most. However, in Florida, my Rolodex of friends has been growing by leaps and bounds since my arrival on July 3rd. Physical challenges never mean a dull moment.     

My positivity will fight the difficult days ahead.  

The rubber band snapping…

The morning started well with my typical breakfast of a bowl of cereal and, in this case, cranberry juice. I rounded off this early meal with one prescription pill and twelve vitamins to complete what a growing boy needs for an active-ish day. After breakfast, I put my dishes in the dishwasher and began several hand and arm exercises because it was essential for me to keep moving. Finally, I completed the AM portion of my day by brushing my teeth and all the other activities that most people do to prepare for their daily routine.

I had been in my new house for three weeks and still had not slept in a bed or horizontally for that matter. Instead, my wheelchair, a pillow, and office desk had become my unbelievably uncomfortable sleeping quarters. It made me more tired than an 8-hour shift of hard labor at the local construction yard, slowing my thinking and movements. Ten years prior, I had stopped drinking caffeine, so I knew of nothing to fight this lethargy that resided in my brain or the all-consuming torpidity in my body. I believed this was the chance monster brewing a cauldron of hatred towards me, which would inevitably cause life-altering obstacles.

As I ran through the list of tasks I had planned to accomplish for the day, something felt a little off. I was slightly sluggish, which sounded redundant from the lethargy I had felt before, but it was different. I had an extremely dry mouth like the Sahara desert sitting in my mouth, even though I drank what seemed like a fifty-gallon drum of water. After thirty minutes of this, I felt like I was moving through the mud as every body movement was a tremendous struggle. It was like I was wearing a one hundred-pound fat body suit and every body movement was a challenge that was getting slower and more difficult. I thought if I at least took a twenty-minute power nap, that would reboot my system, and I would be okay again.

There was a card table in my living room where I placed a pillow and rested my head to stop my body from struggling. My alarm went off after my brief power nap, and I could not raise my head as I was weak as a newborn baby. My arms were just as helpless as I struggled for what felt like an eternity before I called for help. I could not reach my phone, which was hanging around my neck, so I decided to use my voice and my smart speaker. I asked my Alexa speaker to call 911, and she refused, so I had her call my mom, who, thankfully, was nearby and would be here quickly. When my mom arrived just over five minutes later, she called that triple-digit rescue for help.

I tried to explain to my mom how I felt like the Jolly Green Giant used me as a meat tenderizing mallet. No matter the number of descriptor words I used or how well I used them, I knew my mom would never truly understand how I was feeling. Most people can sympathize with how you feel, but comprehension is only possible for those who have lived similar issues. We spoke, and I explained as best as I could while we waited for what felt like an eternity for the ambulance to arrive. I am positive my mom felt helpless because she did not know what to do to help me, so we kept waiting.

When the ambulance arrived, they seemed as perplexed as I was at my puzzling predicament. Firefighter Bill took my blood pressure, temperature, and other vital details when I believe I heard him say they were relatively normal. I quickly questioned his quote of “relatively normal” when his supervisor, Mike, spoke up, clarifying that my numbers were standard. Mike told me that Bill was new to everything, including communication skills, which he obviously lacked from that example. They waited while my mom gathered my prescriptions, wallet, cell phone, and charger, putting them into my travel bag, and then we were off to the races. 

It confused me when my vitals were normal, yet I felt paralyzed for all intents and purposes. I just wanted to sleep, but the ER was only five miles or 12 minutes away, and they were asking too many questions, making sleep as elusive as a Vaseline-coated eel. The one thing that puzzled me is that before July 2nd, I was in Ohio without issues and did everything for myself. But on the other hand, since I have been in Florida, I need a caregiver to assist me because I am as unsteady as a newborn fawn. So I have gone from one extreme to the next, befuddling and bewildering me while adding a little fear to this boiling cauldron of vile intoxication.

Perplexed, I fear the next.

Into the land of giants…

So far, this entire move has been incredibly exhausting and physically draining, drastically weakening my muscles. My reduction in strength makes this small to mid-sized house and everything in it feel more substantial and, in fact, simply impossible. The size of the house contents and my weakness give me a peek at a challenging road in my future. We have all heard if you do not move it, you lose it. Unfortunately, I did not move it and inevitably lost it, creating a sad setback of the century.

After a 77-minute drive from the Orlando Airport with minimal conversation, Lisa stopped outside a pleasant-looking home. She asked if this was the correct residence, as this was the address I provided to them. I clarified that I had only seen a few pictures, but it must have been mine since the garage door was rolling up from the remote opener. It felt strange to be in a new home and a new state because never have I seen this house in person.

A friend of a friend named Callie arrived just as we did, and she pulled into the garage that I had just opened. Without haste and plenty of urgency, Lisa quickly unloaded me and my luggage and put both into the garage. She said goodbye and left like she was late for an appointment, as it was her last trip of the day. Before I got into the house, I faced my first struggle: getting into the house. When you are in a wheelchair, though, depending on your abilities, every step is like climbing Mount Everest. There was a 4-inch step with an extremely short ramp, meaning it was too steep for me to self-propel into the house.

Callie was the first in a crew of four women scheduled by my mom to bring home-cooked meals during my first few days. Thankfully, she was willing and able to push me into the house as the ramp was too steep, making it the first time I faced excessive height in this house. As Callie and I moved through the house, it felt strange because my brain and body were exceptionally exhausted, as if I had tried to do trigonometry for a few hours. My brain was sluggish, and my body felt lethargic, making everything distant like a movie dream scene. It was too early for bed, but I needed a 15-minute power nap to reboot my mental system so I could last until bedtime, but no luck today.

Callie wanted to help me unpack and put things away where they would live permanently. She began to put things away in my new dresser, although something caught my eye about my new sleeping quarters. My bed was extraordinarily tall, so there was no way I could get in the bed tonight without mountain climbing gear and a sherpa. Callie eventually left me to enjoy my new humble abode with a full belly and food for tomorrow. I knew I was not alone and would soon meet neighbors and many other friendly people, but the house felt cold and lonely right then. 

chance

Later that night, I went into my bathroom to brush my teeth and get some acetaminophen. My sore muscles needed a team of Swedish masseuses, and I needed someone to turn off the jackhammers in my banging brain. As I rinsed my mouth out, I leaned to spit into the sink, and my chin was barely high enough to reach the sink, making this vanity way too tall. This bathroom countertop was the third item in my new house that was excessively tall and out of reach for a guy 4-foot tall in a wheelchair. 

The following day, I went into the kitchen to make a bowl of cereal and saw some challenges I would face in this house. Today would be a struggle because my bed was too tall to sleep in, so I continued to be cognitively sluggish. The kitchen was not ADA height, which I expected, yet they pushed everything sitting on top of the counter back against the wall. Although it looked neat and tidy, this situation ensured everything was out of my reach, making another too-tall situation.

My new house

As the game of double-dutch continued, the chance monster waited until now to jump in and begin causing confusion and chaos. The truth is that this entire move has been a roller coaster of one step forward and two steps back. I have had four solid months of exciting ups and some truly disappointing downs. However, a plethora of exceptionally tall things will take time to readjust and remodel for a positive living experience. I also need to start physical therapy to create an exercise regimen that will help me get stronger to aid with every aspect of my life. 

The rubber band is going to snap soon. I can and will feel it.