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.                        

Previously, I wrote a blog on the topic of toxic people, focusing on seven types of these noxious individuals. Since the release date of the blog, I have found that some people do not fit neatly into only one category or in a specific grouping. Sometimes, they are a smorgasbord of toxicity boiling in a cauldron loaded with controlling narcissistic self-importance with a smattering of jealousy. These poisonous people can often be marinated in drama smeared with a dash of exaggeration.

For our health, we are responsible for weeding through and finding tumultuously pernicious friends and considering the following. Have you lost so many friends that you are eager to sacrifice your health and well-being not to lose another compadre? Between you and this cross-cohort, who has a more significant influence on the other? Do you lift them to your level, or do they pull you down and make you align with their insidious behaviors? In this blog, I will tell you about a few virulent people in my circle and how I answered these questions.

For example, I have a woman in my life named Victoria, who is massively materialistic and quite the know-it-all. She can also do no wrong. Although Vicki criticizes those who use profanity, she sounds like a sailor on leave moments later. I see various caregivers throughout the weeks, and Victoria is here enough that I understand her confusing cognitive concerns. Vicki got on my schedule to help, yet I had to decide whether this relationship was positive or negative for her or me.

If you are keeping someone like Victoria in your friendship quiver, answer some of the questions mentioned. Does this person put you in an awkward position where you must contemplate going against your beliefs? Are your health concerns threatened or at risk because no one has considered your ailment or issues? Do you have a stronger pull on them than they do on you, trying to make them better people?

I kept Victoria in my life because I have a greater pull on her than she has on me, not to mention she usually helps me weekly. When she and I converse, I sprinkle kindness and compassion into all topics to ensure she walks away with no negativity from me. Sometimes, Vicki uses a bitter barb towards others, and my response is some positive affirmation slathered with benevolence. My positive personality will never back down and always shine over her caustic, cloudy charisma, like the sun radiating after a rainstorm.

There is my friend Jack, who has changed significantly and has become toxic in various ways. Fifteen years ago, we met, and he began helping me in multiple ways, like driving me to doctor’s appointments. Jack had done more for me in the first few months than anyone else did for me in many years. However, in the last twelve months, he has exhibited highly vicious behavior towards me after recently going through a divorce and being left alone. I tried to make him understand, but alas, for my health, I have severed the ties of our irreparable friendship.

Jack, who is in his late 60s, is extremely stubborn and unwilling to accept the opinions of others, whether right or wrong. With every visit, the vicious verbal sparring arose quickly like the conflagration of a cardboard factory. Although we had been friends for so long, I no longer had an influence on him and no ability to show how the opinions of others were valid. This situation reminded me that my health is more valuable than our friendship, so I removed the cancerous cohort from my friend list.

It is extremely difficult to purge a poisonous person who has been an exceptional friend for a long time. A confidant who has helped you immensely and made an unquestioningly beneficial difference in your life is hard to ditch. I took the straightforward approach, deciding to be an adult and writing him a heartfelt letter explaining everything. It was a challenge, but I had to remind myself that my health must come well before any friendships.

On the other hand, there are a few toxic people in my life that I have decided to keep around. The positive facets of our friendships outweigh the negative aspects, as I have a stronger pull away from the dark side. However, for our relationship to continue, I cannot and will not be the only one to consent to the ideas of others. I must always put myself first and tell them it looks like today is not your day, and we will do my thing this time.

Friends come and go, but the importance of your health remains the same.

This writing is a classic blog showing how life while training was a three-ring circus. So I juggled every word, punctuation, and capitalization to mix and reconstruct to make an updated, enjoyable blog. Like a lion tamer, I whipped these sentences until they correctly formed paragraphs best for your situation education. Just like with the elephant, I have sat and squished all the past participles and adverbs to make the structure of this blog make sense. So, as if you were sitting under the Big Top eating your cotton candy and watching the clown comedy, please enjoy the following blog about my first and only wheelchair 5K. 

When pigs fly…

My buddy Bill came over with a pizza and soda so we could have some socialization with conversation and mastication. We discussed many things, including how my wheelchair life began a few weeks prior, and how it was pretty rough for me. My new station in life dreadfully discouraged me, so this was the focus of our in-depth discussion. I allowed my intense imagination to run wild on how my existence in a wheelchair would look so sad. My brain imagery showed a purgatory of gravel and sand roads I could not traverse to reach my family and friends.

They estimate that two hundred million people worldwide use wheelchairs to aid their mobility. However, the idea of being permanently stuck in my newly seated contraption unsettled me to the core. I lived alone in a house built in the early 1950s, which was not even near wheelchair friendly. The mandatory moving money did not live in my bank account, nor did I have the cash to make my residence more accessible. My imagination showed my new wheelchair life that would be a constant uphill battle deeply drenched in my blood, sweat, and tears.

Bill, who had been in the Air Force, recognized the best thing he could do for me was to challenge me. He told me if I did a 5k race in my chair, he would walk with me, and together we would conquer this beast. My knee-jerk reaction was to say, “I’ll do a race when pigs fly.” However, I later accepted the challenge and began looking for a 5K race in Columbus, Ohio, that would fit my needs. This race had to have a few things, like a first aid lodge, bathrooms, and a place at the halfway point to stop and have lunch. Apparently, for a 3.1-mile race, they do not include any of those amenities, so I settled for a first-aid table and a banana at the end of the race.

Four months and one day before the race, it was time to train for this complex competition. On my first training trip, I planned to conquer the world or traverse a few miles around the neighborhood. Sadly, it did not take me long to realize I did not yet have the muscles to conquer a quest like this. That day, I completed an excruciatingly exhausting 0.2 miles and needed a two-day respite. My arms felt like I walked the entire 0.2 miles on my hands, making them as wobbly as jello during my two-day rest. At that point, I understood my training would take longer than I thought, and we were four months until race day.

Wheeling around my neighborhood every other day, I watched my distance grow regularly. For the first month, I needed the next day for respite as every trip challenged me and was extremely exhausting. While I trekked around the community, I celebrated every milestone I had achieved and watched my mileage grow exponentially. As I got stronger, my seemingly circuitous route took me around a school several times throughout my neighborhood. By the second month of determined pushing, my trips became long daily muscle-building excursions with less pain and more miles. I also recovered more quickly than I expected, as nearly every day, my daily distance crept higher and higher.

The night before the 5k, Bill brought pizza to converse and discussed the morning procedures as I continued to sweat bullets. He reminded me to get plenty of sleep and eat something in the morning, but not too heavy. We talked about when he would pick me up in the morning and what I would wear for this 3.1-mile marathon. I was nervous about the 5k, so Bill reminded me there was no doubt in his mind as I had done the training and was ready for every inch of the road.

Four months after starting this dynamic distance drill, it was game day, meaning it was time to put up or shut up. Now I needed to put my big boy pants on and show the world what I could do, or at least those who showed up. My nerves were shaking more than a guitar string playing heavy metal music, which made me wonder if it was too late to back out. Just then, a big pink pig, one of the hot air balloons floating across the sky, made me break out into booming laughter. Bill looked at me, giggling, and reminded me of my words when I said I would do this race when pigs fly, and now there was one flying.

I spoke with Lisa, the race coordinator, and requested to start the race early. Moving slower than a herd of turtles stampeding through peanut butter, I wanted an early launch. Although I hoped for an hour’s head start, Lisa told me I get 10 minutes after the kids and before the runners. The ten-minute early launch disappeared quickly as the runners caught up and passed me within minutes.

The race was excessively, excruciatingly, exhaustingly long at 5 kilometers, or 3.107 miles, to be exact. Of all wheelchair users that day, I was the first to cross the finish line and get my picture in the newspaper. I started with 0.2 miles on day one of my training, and exactly four months and one day later, I completed 4.11 miles. Others are proud of me, and I am too, but it shows what a little ambition, tenacity mixed with a twist of angst can do.

When told you cannot do something, do it and prove them wrong.

This blog is not about me and my multiple sclerosis, but instead, it is about a shining star and a fantastic friendship. I have been extremely fortunate to have never lost anyone close to me, making my sister Laura the first, which lays heavy on my heart. On Wednesday, September 27th, Laura Kathleen English died unexpectedly in her home in Columbus, OH. She died too young, at 39 years of age, after recently purchasing her first home in Columbus, where she lived most of her life.

Laura meant a lot to many people, but to me, she was more than just a sister; she was a great friend and a writing mentor. As an older brother, she and I would have many late-night conversations discussing life, love, and the pursuit of happiness. We were often a sounding board for each other, commiserating and celebrating whether it was life’s good, bad, or ugly. We frequently communicated on the phone and tried to get together whenever possible in person.

I shared this poem with Laura years ago when it applied to our lives, and she absolutely loved it. Laura told me she genuinely appreciated the blogs I wrote and faithfully reposted them on her Facebook page to help grow my readership. She also posted it because it is an excellent message everyone should take to heart and remember that life is short. So, in memory of Laura Kathleen English, let me again share this poem with all my readers and hope everyone takes to heart the words of wisdom.

Barely the day started… it’s already six in the evening.
Barely arrived on Monday, and it’s already Friday.
… and the month is already over.
… and the year is almost over.
… and already 40, 50, or 60 years of our lives have passed.
… and we realize that we lost our parents or friends.
And we realize it’s too late to go back…
So… Let’s try, despite everything, to enjoy the remaining time…
Let’s keep looking for activities that we like…
Let’s put some color in our grey…
Let’s smile at the little things that put balm in our hearts.
And despite everything, we must continue to enjoy with serenity this time we have left. Let’s try to eliminate the afters…
I’m doing it after…
I’ll say it after…
I’ll think about it after…
We leave everything for later, like ′′ after ′′ is ours.
Because what we don’t understand is that:
Afterwards, the coffee gets cold…
afterwards, priorities change…
Afterwards, the charm is broken…
Afterwards, health passes…
Afterwards, the kids grow up…
Afterwards parents get old…
Afterwards, promises are forgotten…
Afterwards, the day becomes the night…
Afterwords, life ends…
And then it’s often too late….
So… Let’s leave nothing for later…
Because if we are still waiting to see you later, we can lose the best moments,
the best experiences,
The best friends,
The best family…
The day is today… The moment is now…

We are no longer at a time when we can afford to postpone what needs to be done right away.

Our time on this Big Blue marble goes by in the span of a blink, so make life count while you are here. Do not continue to let time slip away like sand in an hourglass, and tell your family and friends that you love them. We do not know how much time we have, so tell everyone how important they are in your life. Although I am a writer, my words are incompetent, insufficient, and inadequate to say what I want. As I initially said, Laura was an essential and bright star in my life.

Laura, I love you very much. Our bond meant the world to me, and I will always keep you in my heart.

Accessible public lavatory facilities are a significant issue when you are a person who uses a wheelchair. Although adequately designed restrooms are becoming more frequent, other challenges can complicate the task. I worked for an engineering firm with ADA design rules and regulations, but no disabled person to explain how to assemble those parts. Just because you have all the ingredients for a birthday cake, there will only be a celebration if you combine them correctly.

I have always been an averagely sized guy at 5 ft 6 in and hovering around 150 pounds with a Pillsbury doughboy squishy center. My heaviest was around the end of my marriage when I was two hundred pounds, as she was a superb cook and excellent baker. The first year of my wheelchair life, I had a cumbersome hospital-sized wheelchair for average-sized adults. This information lets you know that the size of me and my wheelchair has never been an issue when using public facilities. The following chronicles are a few examples of the inadequacies of public restroom facilities that I often deal with.

I hope you are sitting down when you read this inexplicable, unbelievable, and unacceptable public bathroom amenities tale. A vivid memory resides intensely burned in my brain of the first inaccessible restroom I encountered as a wheelchair user. I struggled with an old, oversized, arm-powered wheelchair I had been using for only two months. At Mount Carmel West Hospital in Columbus, OH, I saw a neurologist at the neurology clinic to treat my multiple sclerosis.

I suddenly had to take a tepid tinkle and began searching for the facilities to relieve my internal plumbing pressure. Jan jumped up quickly from the waiting room to help me with my door struggles, as it was heavy and awkward to handle while rolling on wheels. She opened the door as wide as possible, and I looked inside and saw the magical space of a highly accessible bathroom. Unfortunately, the door jam stopped me as I tried to maneuver and wiggle my manual mechanism through the door opening with no success. I sat positively perplexed at how this inadequate facility of bathroom variety could be acceptable at a hospital neurology clinic. Although it is improving, this situation is more common than you think.

When visiting the Columbus, OH, Board of Health to acquire a certificate of birth, I needed to visit the Blatter Evacuation Center. My dad drove me to this place for the paperwork to prove I lived, so we began our trek to locate an accessible bathroom. I grabbed the door handle to enter the facilities, and it felt like I was dragging a six-thousand-pound elephant across the street. My dad, who was in his 50s and ambulatory, grabbed the door and pulled, saying it was like pulling a loaded wheelbarrow with a flat tire. I have used many bathrooms with extremely heavy or excessively narrow doorways, so I do not believe entries are considered with accessibility.

About ten years ago, they examined my eyes at a place called Blind People Optical Emporium or something like that, as I needed glasses badly. I requested directions to the facilities to relieve my achy, breaky bladder and quickly return to search frames for my face. Trying to get to the restroom, I found the door opened incorrectly, blocking the walking path because the hinge was on the wrong side. This situation means it would block the hallway when the door opens, proving they do not consider entry points in ADA regulations.

Now, onto a more lugubrious story because it is about a Recreation Center in my new neighborhood. While at this rec center event, I needed to visit the facilities to dehydrate so I could rehydrate, as hydration is essential. The door opened inward and was not excessively heavy, so I quickly pushed it open with my chair and entered the room. As I tried to exit, what made things truly challenging was location, location, location. The awkward metal trashcan blocked the door, which was in the corner in an unfortunate position, and the door handle to exit was too far out of my reach. They seldom alter entryways sufficiently to accommodate accessibility needs.

They explained that, unfortunately, the rules for the Americans with Disabilities Act do not work like most people think they should. These guidelines only apply to government buildings, not businesses, which are private property. Most companies do the bare minimum, installing grab bars and adding extra space where needed. These corporations follow ADA rules extremely loosely because they look good to the average Joe but often not to the wheelchair user. Typically, these businesses respond slowly, if at all, when there is a need for new equipment or repair for existing accessibility options. Keep in mind that in this blog, I only discuss the accessibility, specifically doorways of public bathrooms. “Eyes are the windows to our souls,” yet doorways are the windows to…well, nothing because they are not windows but doors.

I can’t open doors that aren’t open. But if a door opens, I would be happy to walk through. -Becky Hammon