Lurking devil in the darkness…

Did you know that 988 is the phone number of the suicide and crisis hotline, so call or text 988 or chat at I recently learned that some of my readers struggle with issues and demons I fought with years ago. We all understand if individuals are battling beasts in the open, then others are raging wars alone in the shadows. I want you all to know that you are not alone on this battlefield, and I hope to say the correct words to help. I have been to the edge and pondered that prolific plunge, yet came back stronger and wiser, remaining on the green side of the grass. Friends and family make a difference, but it takes speaking up to enact change and recovery. For many avenues of help, you need to reach out and start the conversation.

I went through many years of a deep, dark depression that tried to encourage me to visit and leap from the ledge. This game between darkness and light stole my thirties, never to return them as time only progresses and never regresses. The onslaught occurred as the angel and devil on either shoulder taunted me ruthlessly. Although this atrocity was a lengthy war, the deadly battle did not reach the dark side’s desired conclusion. The following helped and continues to help me, and I hope others can learn from my time in perdition and reentry into society.

I have met people with families who are as useless as waterproof beach towels, and to them, I say learn your Facebook options. Do not be someone with two thousand Facebook friends you do not know or talk with most of them. Instead, go to your FB timeline and post that you are struggling and need to speak with someone, as many good people will talk. I am optimistic that you will receive a helpful response quickly, but do not stop there and request a private conversation with them.

You can join Facebook groups for whatever you can imagine and post looking for someone to talk with privately too. As a member of fifteen groups primarily focused on multiple sclerosis, I learned that 75% of MS patients are women. So three of the groups are men’s groups which get together twice weekly to video chat. If one gentleman is having a dreadfully difficult day, everyone will listen to that person, as many times, compassionate ears are all they need. With these Facebook clubs, camaraderie is crucial, and fellowship is fundamental, while everything is essential for the well-being of all involved.

To help with brain balance, you must overload your brain with enthusiastic endorphins. These positive peptides resemble opiates in the brain and raise the pain threshold. This action significantly and positively affects one’s mental agility, benefiting the overall outlook on life. Friendships are a great way to boost your endorphins to aid your cognitive modulation. For me, it started slowly, with one friend who reintroduced me to the art of socialization. He would visit my house once per week until he eventually enticed me to venture into public with offers of savory sustenance. Of course, I still felt shame, but my new buddy did not back down from the challenge of encouraging me to open up to the possibilities of life.

Laughing is another way to boost and induce more of the body’s positive mind manipulators. Eventually, I made more friends, which helped me remember how to laugh and enjoy life. Good friends can encourage your tear ducts to dump buckets of face-drenching tears as you pound on the table and cry out with laughter. These new compadres helped me make fun of this arguing devil and angel and see the humor in everything. This idea was helpful to me, as I could then forget about all of my sorrows and past while focusing on my new friends and positive life outlook.

Exercise and meditation can also help your mental wellness, as they did and continue to do for me. For those of us with MS, there can be a fine line between doing too much and not enough exercise. What is worse is that this line bounces like a caffeinated Chihuahua on a pogo stick, rarely staying in the same place. Meditation helped me to guide my mental monsters out of my brain while organizing my thoughts. The practice of this quiet rumination can be challenging, especially for those of us with busy brain syndrome. The key for both is to simply stay the course.

Here is the deal: I am not a therapist, nor do I play one on TV, but this is my opinion as a survivor of dreadful thoughts. I know that life’s challenges and struggles can cause a powerful depression that can envelop your existence. I understand that depression is different for everyone, and every person deals with it differently. However, I feel that one of the most critical factors in healing and recovery from depression is communication. Discuss your issues with family, talk with friends, or communicate with teachers, but most importantly, do not leave loved ones in the dark.

988 is the suicide and crisis hotline.

Come on and Rescue Me… The last episode…

Everything on me hurt, like my hand that I had been painfully smashing between my body and the hard surface floor for three hours. The fall twisted my head and neck, leaving my face smeared onto the floor while my cheekbone burned in pain from the slam and continuous pressure, and I could not move. The sound of my snapping neck during the fall echoed through my brain bucket, causing my imagination to run wild with dangerous possibilities. Finally, at six in the morning, it was time for call number four thousand one to plead for help from the only phone number my Alexa would call.

“Alexa, call Mom.” I felt like a man walking the desert dying of thirst, heading for a mirage in search of water, hoping my mom would actually pick up the phone. Suddenly, I had won the lottery because the phone did not go directly to voicemail but sounded like a ringing telephone on the other end. Finally, after two of the longest rings of my life, my mom picked up, and without explaining, I exclaimed in my muffled voice, “Mom, call 911; I am hurt badly and need help.” Quickly and without questions or verbalizing her plans, she responded okay, and the line abruptly disconnected.

After what felt like an hour, but in reality, it was closer to five minutes, I could hear my mom punching the code in and the motor grinding to open my deadbolt. She entered my office, where I was lying uncomfortably on the floor, explaining she could not call for help without the facts of the situation. Although she wanted to help me, I quickly clarified I should not move, as I heard a snap, crackle, or pop in my neck during the fall, and I did not want to risk further damage. I explained everything that had occurred, and without haste, my mom called that triple-digit rescue number to get me the help I so desperately needed.

When the firefighters arrived, and after a quick assessment, they cautiously lifted me from my prone position, placing me in my wheelchair. While seated, they took my vitals and continued to assess the damage, finding nothing, although they recommended I go to the ER. As we waited, I had two more vicious muscle spasms that would have launched me out of my chair and onto the floor if not for the firefighters’ quick reaction time. However, they were unconcerned and did not have me wear a neck brace or any other bracing for my neck or back. The ambulance finally arrived to whisk me away to a nicer, yet not much farther from the previous ER.

The ambulance took me to a standalone emergency room called Trailwinds ER, where many outstanding staff members expedited my examination. First, medical assistant Sandy placed me in a room, taking my vitals, insurance details, and other pertinent information. Next, nurse Janet received orders from doctor Bob to scan my neck and face to verify any damage. After two hours and two scans, Dr. Bob explained that there was no significant or permanent damage and that I could go home.

The staff at Trailwinds ER were done with me and my medical scans by 9:00 a.m. and released me to go home. Unfortunately, I had to wait for hospital transport to take me home, as I had no other means of transportation. With nothing to do, I stayed on the gurney for five hours while transport came from an hour away. When we arrived at my house, they put me in my manual wheelchair, and I was back to the starting point, no worse for wear.

So after my morning of torturous turmoil was all said and done, I purchased that emergency “save me” device the next day. Once the salesperson learned of my frightening four-hour tale, he overnighted the call button rescue kit at his cost directly to me. I tested the device, comically quoting the commercial, saying, “help me, I’ve fallen, and I can’t get up,” although there was no laughter on their end as it was really to amuse myself. The urgent rescue necklace worked well except for a few slight delays in response times, and they later told me of their understaffed dilemma. After that, however, I felt safer having this pressable pendant dangling around my neck as it eagerly waited to be called to active duty with a simple squeeze, quickly crying out to prove its worth.

After several months of getting stronger and achieving horizontal sleeping quarters, I felt secure again. The bruising on my chest had healed, and I had no violent muscle spasms or minor ones that caused a fall or near fall in quite a while. I felt safe no longer using the makeshift seat belt to secure me to my wheelchair and had no spasticity unstabilizing me in my seat. However, I began often having accidental button pushes calling for unneeded help, forcing me to explain too frequently about each false alarm. So this once-beneficial medical alert system was essential for several months and later became discouraging with all the false alarms, so I ended my contract.

A Vicious story, A Victorious ending.

Down, but not out…part 2…

Although light was bleeding through the window blinds, I could barely see the trash can and the empty floor area. Struggling to breathe air as the seat belt continued to crush my stomach caused panic to run through my brain, full of the worst-case scenarios. Then, finally, understanding that being unable to respire was terrible as the human body needed air for life to exist, I did not know if mine would last much longer. Quickly I ran through the sequence of events in my head about what I had done and could have done, but I urgently changed my thoughts to the task at hand: escape.

It was hard to catch my breath, like trying to grasp a Vaseline-coated eel, and I feared passing out in this perilous, pendulous position. I continued struggling to gain freedom from my swinging prison, it was like an elephant sat on my chest, and I could not take in air. I tried again to climb the drawers, hoping to lift enough to find the elusive air I so desperately needed, yet I was unsuccessful. My heart was pounding as I fiercely tried anything to escape what I thought would be an extremely odd final resting place or hanging place, as it were.

In the chaotic panic, I forgot that when I tied something onto my body, I always used a quick-release knot as emergencies could happen anytime. However, in the relatively dark space, I had to find the rope’s end, which was the quick-release part of the webbing. So I hung like a Christmas ornament floating on the tree, I flopped around like a fish out of water trying to escape this sling swing. I was looking for the correct part to pull and release me from this jungle gym jail, end this mess, and rescue this day and me.

I found an end piece to the belt and pulled with dwindling strength the longer I hung, trying to breathe. The more I tugged in this pendulum position, the more I realized I had the wrong end, and I quickly began the hunt for the other piece. As I dangled in my dark office, my arms got heavy and reaching became challenging, meaning I needed a rest. I did not feel I had the time, but I stopped and took several slow, deep breaths to allow my muscles a brief respite. It was a struggle for this much-needed rest, but successful as I quickly found the other end of this makeshift seat belt and yanked on it with newfound vigor.

After my brief rest, I had a newfound strength, though it took some effort to free me from the not-so-quick-release knot I tied. Dropping like a rock, I crashed and hit my neck when I heard something click, scaring me as the sound continually echoed in my head after my landing. I crashed with my chest down, face and neck twisted to the right, and I feared moving as I was sure my neck had snapped on the way down. With no strength to move, I was terrified of shifting my body, as I knew neck injuries could be quite severe. A little after 3:00 a.m. I was flat on the floor and could not move because of my strength and my neck with no phone; then I remembered my smart speaker.

Pain radiated through my body as the fall was easy, but the landing was brutal as I fell on hard surface flooring. I spoke as loudly and clearly as possible with my face pressed against the floor and said, “Alexa, call 911.” Without haste, she replied with a devastating response, telling me she could not call Emergency Services from that device. I hated to call anyone that early in the morning, but this was what they called an emergency, so I said, “Alexa, call mom.” Her phone did not even ring and immediately went to voicemail, so I continued calling and filled her voicemail until the mailbox was full. 

So from zero dark thirty until six in the morning, I continued to call my mom’s phone, begging for help. I tried to call other people, but my smart speaker would not allow me to call anyone else. I began contemplating life and thought I had lived a good life and put plenty of positivity in the world, so if this was the end, I was okay with it. That was a little dramatic, I know, but I would be lying if I did not say that was precisely how I felt as I waited, tired and in pain. Stay tuned till next week to hear the dramatic ending of this vicious story. 

Your imagination is so much worse than reality.

Dangling over the edge…

I began seeing occupational and physical therapists twice weekly, making my schedule very busy. The common factor they felt was essential for my life was building my strength, as I was weaker than when I was swimming nine hours weekly. We also worked on the crucial transfers from every surface that I usually shift from, as stable transitions are vital. I needed to return to the pool as the water eliminated gravity, a ferocious fighting force against my land exercise.

I had been battling severe spasms in my legs for several weeks at that point, and no one had a resolution solution. The occupational therapist had no explanation, although she thought my makeshift seat belt was a brilliant and creative idea. On the other hand, my physical therapist recommended I speak with my doctor about attaining more muscle relaxers. However, while trying to ease the violent spasticity in my legs, I was unwilling to request more medication as I feel pills should be a last resort.

I was dealing with these violent muscle spasms on what felt like an hourly basis, causing black and blue bruises across my chest. With every move, I tightened the seat belt to prepare for an uncontrollable muscle convulsion that could launch me onto the floor. Muscle spasms continually through my body into my office desk and kitchen table, causing a green-blue bruise across my chest. Finally, I got to where I could feel when the spasm might happen and could prepare myself not to tip out of my chair. These spasms were exhausting, whether slamming my chest into a table or nearly thrusting me out of my chair onto the floor.

Doing the exercises for physical and occupational therapy was beneficial but very exhausting and time-consuming. Moving to Florida was a tremendous ordeal as this transition would be for life, meaning, foremost, finding all new doctors. This Floridian transformation was massive because I had to find civilian and VA doctors and find and set up para-transit for all my transportation needs. Then, of course, I needed the doctor’s note for the para-transit, and I needed the para-transit to get the doctor’s note; what a conundrum I was in. I also needed to find a grocery store, travel trip times, and make many phone calls to find various essential businesses and other necessities around my new town.

I was looking forward to sleeping that night, no matter how restless I was, as exhaustion filled every inch of my body. When exhausted, my speech slurred as my tongue felt like it was twice its size and caused communication complications. My muscles also weakened, and my thinking slowed as fatigue caught and crushed me like stepping on a bug, making sleep an urgent priority. Finally, I was so tired and weak that I slowly rolled into my office, shut down my computer, and turned off the lights to get much-needed mind-rebooting slumber.

My spasticity slowed as I lay my head on the pillow on my desk, yet I could not get quite comfortable. This consideration led me to loosen my seatbelt slightly, as it was too snug after having it tightly around my waist all day. I wrongfully assumed this experimental webbed belt could hold me if I had a violent twitch or a vicious twerk. The spasms picked up again, and in one sudden hard convulsion, my leg spasm threw me over the side of my chair, being held halfway to the ground by the loose belt.

So at 3:00 a.m. I hung by the webbed belt, so I tried to use my hands to climb up the drawers like a ladder, to no avail. The seat belt and my body weight squeezed me, making breathing an uphill battle that caused me to panic. My eyes quickly scanned the relatively dark area around me, trying to view my options as terror filled my brain while contemplating worst-case scenarios. Pinned by my office desk, filing cabinet, and a wall, there was no allowance or means of escape from this prison from which I was dangling.

As they say, I was quite literally hanging by a thread, though in this case, it was webbing tied as a makeshift seat belt. So, I had many thoughts running through my head, uselessly trying to encourage me on ways to get back into my wheelchair completely. Struggling to breathe, I knew that air was free, but the effort was not, and my breathing became more laborious. Be sure to come back next week and learn how I changed my prickly predicament, what injuries I acquired, and what happened next.

Oh, how wrong I was to loosen the seat belt.

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.