I share the true stories of my MS life with any person perusing my papers to show how in life I deal with the good, bad, or ugly. I want people to see that no matter their concerns, bad news medically, or just a person in a mood of constant negativity, we will make it together. My hope is that when people read my words, they feel encouragement and inspiration slathered with a thick, meaty layer of hope. They should gain the confidence to stand with their heads held high and understand they are not alone in their difficulties.

I never want my writing to sound boastful or braggadocious when I share positive stories about gifts I receive. Some have said that I share too much, but the anonymity of the Internet and my belief that no one is concerned about me say they are incorrect. I do not have secrets about my MS life, as I have shared my most embarrassing moments, and people overlooked and disregarded them. When discussing my life, the good comes with the bad, while personality, attitude, and perception make the difference, along with a dash of self-deprecation.

I told everyone how for me to move to Florida, the planets and moon aligned perfectly, while the administration of veterans helped significantly. This perfect planetary positioning has continued as I have begun receiving help in various ways, such as grants and various programs. I lived here for the first ten months with very little assistance, yet when the floodgates of aid opened, it began a torrential downpour of help. Although they are the roadblocks of the Veterans Administration, I am forced to dance across a red tape tightrope like a ballerina on opening night.

In Ohio, I often went two weeks without seeing another human, making me depressingly lonely and bored, with no way to ameliorate my unhappiness. Life moved very slowly at the time, so having more than one doctor’s appointment in a week was a rarity, let alone several in a day, like in Florida. Because I avoided the snow and cold, I clustered my appointments in late spring or early summer, avoiding the worst weather. My time in Ohio was an extremely melancholy existence filled with isolation, desolation, and starvation from human interaction.

Although the Veterans Administration is paying to have my house remodeled and helping me attain an accessible vehicle, there is a ton of work for me. There is a shocking amount of work for veterans to do their part in this accessible rehabilitation reconstruction request. As these rules change frequently and get shared rarely, keeping up by shucking and jiving while following the rules as best as possible is a laborious task. What makes things even more complicated is that the rules for all programs differ and rarely concur with each other.

So, as I sit here in Florida, there is an exhausting tug-of-war going on in my brain between not doing enough and doing too much. I lived for so long in Ohio with nothing to do. I am in my new home with five times the amount of work, making me intensely overwhelmed. Not yet have I been able to organize all my medical appointments and set them into an annual routine for convenient consistency. Depleted, drained, and weakened, and though difficult, I must carry on completing the remodeled remodification.

I say all of that to share this: I divided my time between very few things in Ohio, and the only thing I worked on was my blog. Although I ate three meals a day, nothing used up my time more than my writing as I put pen to paper ten hours every fifteen-hour day. Because of my excessive writing, I posted a blog once per week, although the quality lacked quite a bit of pizzazz. However, that was then, and now, it is a whole new ball game in Florida where there is much more to do and take up my time.

I am now in my new home state of Florida, where a smorgasbord of tasks begs my attention, pulling me away from my writing. A plethora of duties monopolizes my day, minimizing the time I can write each day. I genuinely enjoy every aspect of my writing process, so I will continue to write, but my writing may not be as good and punctual, or I am just my own worst critic. However, I am still considering writing a book. Although the idea is rolling around in my head, it is ambiguous and murky at best, so we will see what the future holds.

These times, they are a changin’

It is essential to stay organized in this world where chaos confounds everyday life, challenging our existence. Keeping a list of your doodads and do hickeys diligently divided is beneficial so you can reach them instantly when needed. The intelligent choice is keeping your widgets and digits stacked neatly for quick, convenient contemplation. In addition, having your entire calendar of events prominently posted for your perfunctory perusal should be a requirement.

As a 22-year veteran of multiple sclerosis, I like to control my cognitive concerns as senility runs on my sister’s side of the family. However, things have changed since I began using technology to aid my memory and simplistic systematization. I was old school in the early days, and my house showed it as I coated everything in a thick yellow layer of Post-it notes. These bright inked jots would give me notice for mundane tasks ahead, like eating and brushing my teeth and many other ridiculously rudimentary reminders.

There is now so much technology to help you stay organized that excuses have gone with the dodo bird. 3.48 million Applications exist in the Android Play Store, and 2.22 million apps reside in the Apple App Store, reminding us there are many apps for that. These application operations can assist, remind, play games, or even tell you when to throw old apps out the window. Gone is the day of tying a string around your finger to remind you of a task you inevitably forget. Writing a to-do list on paper that eventually falls to the floor and gets lost in the trash of modernity is superfluous.

Devices like smartphones, computers, and smartwatches make it impossible to stay unorganized. MSers and most people must find what works best to keep our lives formulated and coordinated to avoid confusion and chaotic clutter. Multiple sclerosis causes plenty of brain cloudiness from shoddy short-term memory, like trying to use an old computer from a junkyard. Simplify your life using apps to manage finances, schedules, and more. The benefits are plentiful, as the possibilities are endless.

With organization comes empowerment.         

One of the most significant issues with multiple sclerosis is the many hidden symptoms leading to accusatory statements from strangers. The invisibility of these MS issues means others do not see, perceive, or believe they even exist. The primary posed proclamations towards me or other MSers are that we do not look sick, so we must be okay. My friend Jim even told me about Mark, a guy he knows who also has multiple sclerosis and does not complain like a fellow MSer, Eileen does. These statements drive MSers insane and can cause us to stand our ground vociferously in defense of ourselves. 

All people with multiple sclerosis are different, so if you know one person with MS, you only know one example of this inexplicable, unaccountable, and unpredictable medical condition. I have been a member of several local MS support groups and am currently in a variety of MS Facebook groups. I will do my best to explain the experiences of those dealing with these covert complications with my knowledge. With this blog entry, I must help defend my unwell brothers and sisters by spreading these comprehendible words to the ill-informed masses. I only hope that using my words can do justice to all of us warriors stricken by multiple sclerosis. While I sit in my wheelchair, rarely does anyone question the unseen symptoms affecting my day-to-day life. 

In the multiple sclerosis family, we deal with many dilemmas and even daunting doubts from others. MS on a good day is merely a beastly condition continually taking from every aspect of our daily lives. People question our courage and persecute our pride as we struggle through our every movement. Most people will never understand the debilitating issues we warriors go through to simply get out of bed in the morning. Yet with every strike against us, we persevere like a baseball star hitting out of the park, every psycho spitball thrown by the diabolical devil himself.

We no longer have the luxury of taking any part of our lives for granted and must consciously consider every minor task. Drinking a glass of water, for many MSers, requires extra steps that could choke and kill us if not followed. Like a pitcher watching the catcher’s hand signals, we must follow the extensive steps for every essential task. We have a deep-seated fear of having dinner with friends or family, as we wonder if the night will end on an ambulance trip. It is no wonder why melancholy and depression fill the manipulative and maleficent world of MS. 

We have a deeply drenched fear of every movement and how our multiple sclerosis-riddled bodies react to our locomotion. Will the next treacherous step we take land us in a motorized movement machine, changing our lives forever? We think about the terrors while awake and maybe get a reprieve when we slumber. This respite from our daymares is only if the sandman does not brutally bombard us with cruel memories of what we will never be. So much depression forces us to cry as the rivers of fears turn into oceans of tears, drowning out our thoughts of survival.

There is a symptom with a magnificently merry moniker that has a devastatingly sinister impact on the body of the MSer. MS Hug is the name of this symptom, and physical terror is its game. The explanation from Bill was a python that wrapped itself around you and squeezed hard enough so every lifesaving breath was excruciatingly exhausting. These breathing complications are challenging and can last for weeks, months, and, sometimes, years, from my understanding. Janet detailed it as five bands wrapped around the torso tightened like a vice grip, allowing only slight pain-filled breathing. 

Pain is a common theme across these invisible indicators, severely affecting my multiple sclerosis family. Some MS patients undergo such painful torment that they need a proper pain patch to barely ease their suffering. Most people know the mundane pain of a headache, stubbing your toe, or maybe even a broken arm. However, the pain of those with multiple sclerosis continues forever, yet we have learned to smile through it like the warriors we are. 

People without multiple sclerosis have been tired from a long workday or a vigorous fitness routine. However, from an MSer perspective, we sometimes get dreadfully debilitated and need a respite from merely taking a shower. Needing a major rest after a minor task is as common as the sun rising in the east. Fatigue affects parts of our lives we do not always expect, like it can make us ridiculously weak and make speech slur. If I do not find relief, my disabilities can get excessively worse, requiring a more extended respite. 

I hope I have done justice explaining some of the invisible symptoms plaguing some multiple sclerosis patients. My MS brothers and sisters and I courageously combat these unseen issues as the battle-tested warriors we are. I believe these hidden afflictions would take down most mere mortals, yet we stand with our heads held high, like superheroes in a movie. Like Tub Thumping said in their song: I get knocked down, but I get up again; you’re never going to keep me down.

They cannot stop us, superhero warriors. 

Astrophysics teaches us that traveling back in time is impossible, meaning we only have it now, so let us use time intelligently before it slips away. Time makes us all prisoners of the present, forever transitioning from our past to an unknown and mysterious future. Therefore, our social circle must understand the adoration, admiration, and appreciation we hold for them without question. We do not know how long we will get to ride this Big Blue marble through space, so let us live each day like it could be our last, as the last curtain call could be at any moment.

There is no time like the present to make such changes in your life, so as we creep into the New Year, more perfect timing does not exist. Although the majorly materialistic masses enjoy spending money to show their love for others, it does not compensate for the missing interpersonal time. The latest tech toys are great, but an intimate conversation over dinner, coffee, or something in between means much more than any gadget. It is essential that we demand patience, compassion, and understanding from ourselves when dealing with any person or predicament.

The average lifeline of a human flies faster than Halley’s comet through our solar system. While here, we should stop worrying about the insignificant issues that plague our lives, which truly do not matter. I understand your friend Janet said something to offend you, but do not take it out on Mini-Michael or little Lisa, who will only briefly be this age. Instead of trying to make significant memories once a year, make a lot of smaller memories, as they are more frequent and meaningfully memorable. When reconnecting to keep someone in your life, do not merely text them but call them. Texting is highly impersonal and more beneficial for quick conversations.

So, this New Year, let us focus on the idea of time for which we have entirely too little of and do better at controlling and not wasting it. When thinking about our life’s clock, it is essential to remember that we need to grip it tightly, use it wisely, and waste it rarely. We must take the time to teach our children love, understanding, and compassion through the sharing of time. It is imperative for us to make time to spend with family together to show that unity is better than dissension. Lastly, let us find time to connect with old friends who somehow silently slipped and escaped our new reach.

Live every moment, laugh every day, love without boundaries.

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 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 most extended 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, although 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 an emergency room called Trailwinds ER, where outstanding nurses examined me expeditiously. 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 directly to me at his cost. 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, 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 strengthening 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 I had no muscle spasms making me unstable in my chair. However, I began having frequent accidental button pushes calling for unneeded help, forcing me to explain each false alarm too often. This once-beneficial medical alert system was essential for several months and later became discouraging, meaning with all the false alarms, I ended my contract.

This story is vicious, but it has a victorious ending.

Although the light was bleeding through the window blinds, I could barely see the empty floor before me. Struggling to take in 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, I understood that being unable to breathe oxygen 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 sitting 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 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 tie something onto my body, I always use a quick-release knot as emergencies could happen. 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 a tree; I flopped around like a fish out of water, trying to escape this awkward 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 to 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 I was 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. So, 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 filling her voicemail until the mailbox was full.

So, from three o’clock until six in the morning, I continued to call my mom’s phone, asking, in fact, begging for help. I tried to call other people, but my smart speaker would not allow me to call anyone else. Contemplating life and thinking I had lived a good life, I knew I had put plenty of positivity into the world, so if this was the end, I was okay with it. I know that is a little dramatic, 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.

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, painfully marring my midsection. With every move, I tightened the seat belt to prepare for an uncontrollable muscle convulsion that could launch me onto the floor. These muscle eruptions slammed my body into my office desk and kitchen table, causing bruises of blue and green across my chest. Finally, I got to where I could feel when the twitches might happen and could prepare myself not to tip out of my chair.

The exercises for therapy were beneficial, exhausting, and challenging to do in the gravity of the land and took a lot of time. Moving to Florida was a tremendous ordeal as this transition would be for life, meaning, foremost, finding all new doctors and arranging transportation. Then I needed the doctor’s note for paratransit and the paratransit to get the doctor’s note; what a conundrum. I also needed to find a grocery store and make many phone calls to find essential businesses and other necessities.

I looked forward to sleeping that night, no matter how restless I was, as exhaustion filled every inch of my body. When extremely tired, my speech slurred as my tongue felt as big as a bratwurst, which caused communication complications. My muscles were weaker, 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 that I slowly rolled into my office and turned off the computer and lights to get a much-needed mind-rebooting slumber.

My spasticity slowed as I laid my head on my desk on a pillow, yet I could not get quite comfortable as my body felt like it was buzzing. These feelings led me to loosen my seat belt 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. Suddenly, a ferocious leg convulsion threw me over the side of my chair making me hang six inches off the ground by the loose belt.

So, at 3 AM, I hung by the webbed belt, quickly scanning the dark area, filled with terror, trying to find my options. The seat belt and my body weight squeezed me, making breathing an uphill battle that caused me to panic. I tried to use my hands to climb up the desk drawers like a ladder but was unsuccessful. My desk, filing cabinet, and a wall gave no allowance for movement and no way to escape this prison from which I dangled.

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

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

During this triple holiday season, most people will visit with family and friends first, catching up on thankfulness. Everyone will question each other about what they are thankful for and what makes them happy during this season. However, ask me, and I will share my gratitude for my blog readers while they also give me bursts of quick complimentary comments. Whether we are talking Avid readers, those who only read a few entries, or anything in between, I thank you.

Please remember that we are doing our best while living on this Big Blue Marble together in this season of love, joy, and gratefulness. There are plenty of poisonous people lurking in the shadows and out in the open today, so keep yourself guarded. The only thing that can protect us from hatred and bitterness is love and understanding, so spread kindness and compassion. A simple smile can also send an unmistakable warm message encouraging others to reciprocate your kind gesture.

While discussing politics, a popular topic, I hear, “If you are not with us, then you are against us,” and like Wolverine, the claws come out. There is enough bitter hatred and aggression towards others for being different or standing on the other side of an imaginary line. If someone stops you and shares this acrimonious political speech, change the subject or find a reason to walk away. I have not talked about politics in 18 months, which makes me happier, so believe me when I say your brain and body will thank you.

So, to all my readers, whether you are a friend, frenemy, or foe, thank you for taking the time to peruse my papers. I also have a deep gratitude and cavernous appreciation for those who continually encourage me to write a book. The book-writing idea is in my head, nebulous at best, waiting for clarification from my brain box. I hope everyone has a great holiday season, whether you are celebrating Christmas, Kwanzaa, or Festivus for the rest of us.

Savor every moment like it’s the last Twinkie at Weight Watchers camp.