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.