I do not set New Year resolutions; however, I have ideas and goals to develop and put into place. Of course, here we are in 2022, and I hope it will be a good turnaround year. The last two years have treated me exceptionally poorly physically, mentally, and emotionally. This thought means my new goal for this lap of the Earth around the Sun is to get my body, mind, and spirit back on the right track. I plan to accomplish this in various ways to put my chi back in line with the universe by using meditation, exercise, and bettering my sleep. First, here is a list of some of the positive things I will bring into 2022 as we continue rolling through time. 

There are a plethora of health benefits to the simple act of standing. For this reason, the VA bought me a power-standing wheelchair so that two to three times per week, I can stand to reap these perpendicular positioning perks. My daily driver wheelchair is still my manual title ZRA, which allows me to build my arm strength while moving around my house and public with ease. The VA hired a Physical Therapy company to come to my house and teach me to transfer into the chair independently. It helped me some, but I still could not comfortably nor safely slide into this chair without help. At that point, the VA hired a company to come to my house three times a week and aid me in this elevated endeavor of mine. serving my country has allowed me to receive the Veteran benefits that have been extremely valuable in my life. These perks have helped me in ways I never considered plausible; although I am now in a place physically, I never imagined possible.

As for my daily driver, it is a ZRA manual wheelchair, I have a date to evaluate me for a new Tilite chariot. My current chariot is six years old, and I often hear the squeaky bolts and joints yelling at each other to hold tight with all their might. Whenever my chair turns, stops, or rides over even a slightly bumpy road, everything is screaming and straining to stay together. The first thing in the morning, when I get in my chair, there is a loud bolt pop shouting in a thick New York accent, hey, I’m sleeping over here! In addition, the seat pan is what they call a sling seat pan and has sagged, making sitting square in the chair an uncomfortable undertaking. The seat pan and cushion also need to be longer to support my thighs, positioning my feet correctly and more comfortably on the footrest. Finally, the body ages and changes over time, and so does machinery, requiring a significant overhaul or a simple replacement.

The aide helps me around the house, assisting me with cleaning and putting groceries away. More importantly, she aids me by cooking foods I would otherwise not cook for myself, expanding the list of foods I get to enjoy. Unfortunately, my muscles fatigue quickly, meaning I cannot spend much time preparing food, making the variety of food that I produce myself extremely limited. Nevertheless, I need to avoid TV dinners, and I have learned a few minor tricks to cook food simply and healthy. My goal for 2022 is to continue learning to cook for myself and have the aide cook occasionally. However, the bad part about the aide is that there is no consistency in punctuality or even showing up, making everything a coin toss, whether or not it will happen.

Since I had to stop swimming at the pool because of the pandemic, I have lost much muscle mass and desire to return ASAP to this advantageous aquatic activity. I hope the aide who helps me with the power chair can also help me return to the pool. Happily, she has already said she would gladly assist in the water, so it is now up to the VA to pay. However, my daily living is drowning in difficulty and daunting dilemmas because of losing my swimming, stamina, and strength. Maybe I am jumping the gun a little, but I have the swim instructor who taught me these salubrious swim skills lined up to help me get comfortable in the water again once I return. Of course, everything depends on punctuality and whether or not the aide will even show up; so far, I would give her a low grade.

Lastly, I have had ten of my blog entries published in a national magazine, which feels extremely good, and hopefully, it added a few extra readers to my blog. In addition, several published authors and a few writers have told me my blog is well written and made various other positive comments. One author wants to help me turn my writings into a book, but I continually question it as a lengthy and laborious journey. So we will see where life takes me and my blog over the year 2022 and beyond because experiencing life gives me something to write about, so I need to get out of this house.

There are 168 hours in a week, and I have company for a total of six hours a week, if I am lucky. Being locked in a house with no socialization can simply drive a person mad. So this idea of a desire to avoid continued loneliness means it is time to get back to the pool and life in general as soon as possible. So this is my final set of goals for the new year: get back to the pool and my exercise regimen, and if I am lucky, maybe even date and find someone before I hit fifty.

The future depends on what we do in the present.

Typically, if a person is in an accident and becomes paralyzed, I understand they can receive a significant amount of wheelchair training. However, you do not receive this trundle training if someone becomes wheelchair dependent because of other medical conditions, such as multiple sclerosis. For example, I became wheelchair-bound and received a wheelchair with no education, although I have a resilient personality which helped immensely. I am not sure why this wheelchair instruction is not mandatory for all new wheelchair users, as it is information severely needed to keep blunders and bruises to a minimum.

My wheelchair life, specifically speaking transfers, has been complex, as this movement became a coin toss starting a year into the pandemic. When I pulled up to do a seat switch, it was always a Crapshoot of maybe I would make it and maybe not. We have all heard the phrase Once Bitten Twice Shy, which is why I have become much more nervous about transfers after I have fallen several times. I get in my head just before a transfer and think the chance of success is a tiny number like the ones scientists use when weighing atoms. The more I hesitate when transferring, the more fearful I become, and my muscles become shakier, creating more of a chance of falling, making me more afraid. This vicious cycle of terror, hesitation, and muscle agitation turns into torturous trepidation, which causes more falls.

Before physical therapy, the transfer from my wheelchair to bed began going wrong after a year into the pandemic. The memory of falling and then calling the fire department to pick me up caused dread deep within, as they had better things to do than pick some guy up off the floor. I had fallen twice in the past week, and that frightening flashback caused a terror shiver that started at the base of my spine and, like an insidious spider, crawled all the way up to my brain stem, all eight legs caressing my fear factor. I stared for five, eight, and then ten minutes at this small gap that I had to do a rump jump over, not wanting to fall and be revisited by firefighters like Ghosts of Christmas Past.

I could feel my muscles continuously twitch as I sat on the edge of my wheelchair filled with angst and contemplated this transfer onto the bed. The remembrance of the fire department picking me up caused more hesitation and trepidation, forcing this seat switch to take entirely too long and keeping my tired body away from my desired pillow. You truly cannot comprehend just how badly I did not want to make that triple-digit call for rescue, although one could say that is the price of living independently. Finally, after a thirty-minute game of chicken between me and the gap between my bed and wheelchair, I lept using my foot as a fulcrum point and landed safely. This experience let me know, although, once again, it was a close call, I had not lost the battle to gravity that night, avoiding that dreaded call for help.

The physical therapist rang the doorbell, and when I answered, he introduced himself to me as Shaw, explaining it was his nickname. I led him to the couch where he sat, put his bag down, and took my vitals while I detailed the issues with which I needed help. I told him the most critical issue was my serious struggle with safely transferring to the bed and avoiding a forced floor introduction. He shared that he usually recommends the slide board for most transfers to help prevent any unexpected and catastrophic collapses. I have received several transfer boards in the past, but no one has ever shown me how to use them correctly, which would have helped immensely.

When we were next to my bed, I began showing him how I transfer, and he quickly pointed out my movements that were, in his words, very risky. He worked with me for another twenty minutes, showing me the proper positioning for the board and the angle and alignment for my chair. The bed is also several inches taller than the wheelchair, meaning as I slide up on the board, I get closer to the bed, and my weight pushes the mattress down for a smooth transition. Finally, he reminded me that the chair needs to be angled about 45 degrees from the bed, keeping the back of the chair farther away, leaving a gap for the slide board to span. It was an excellent education that they should give early in someone’s wheelchair life to put into practice and save the calls to the fire department for actual fires.

Over the next few weeks, Shaw guided me on correct transfers from all three important places and even a few less significant spots for seat shifts. Most of my transfers happen either in the morning when I get ready for the day or at nighttime preparing for bed. Since I have learned this transfer trick, I have had only one unsuccessful event, and I merely slid on the board back down to my chair. This action was not a concern, as I had a slide board under my derriere the entire time and a forced floor landing was highly improbable.

A positive attitude makes the struggles manageable.

Eskimos and Inuits have forty to fifty words regarding snow, and Webster’s dictionary has six definitions for the word normal. I recently heard someone use the word normal degradingly when referring to a coworker with a disability, as if his disabled coworker is abnormal. We should eliminate the terms normal and abnormal from our vocabulary when referring to humans because a normal person is like a unicorn great in theory but does not exist in reality. So let me give you a few examples of people who think normal people are alive and do not realize the individuals they are referring to do not exist, just like sasquatch.

Tom made a derogatory statement and did not think it was a big deal when he referenced his Boss, Brian, as normal compared to the disabled woman in his office. It was just that the woman got a closer parking spot, and he had to walk a little in the rain. Tom said normal people like him and Brian do not get special treatment, although they are exceptional employees. However, Tom does not know Brian has a secret that has been affecting his life for years.

So Tom let me tell you about your Boss Brian, who you consider normal although he is not, and that is okay. Brian has had a confidence problem and is scared to talk to the public. A year ago, your Boss saw a woman who was larger than life, extremely boisterous, and excessively confident. Brian goes home every night and dresses in a skirt, blouse, and heels, just like the woman he saw several years ago. He does this to mirror the woman attempting to build his confidence, just like the brilliantly bold woman. There is no such thing as ordinary people, and there is nothing wrong with that fact, so stop using that word to talk about any human.

And then there is Lisa. She walked past the bus stop and saw a guy in a wheelchair talking a little slower to his assistant, so she kept her thoughts to herself. However, when she walked into the crowded coffee shop and sat down next to a gentleman, she no longer held her views to herself. Instead, she started a conversation and let loose about normal people to someone who is not because, to her dismay, normal people do not exist. They conversed for about forty-five minutes while finishing their coffee, discussing everything under the sun. Little did Lisa know people who are a little quirky sometimes hide in plain sight.

But what you do not know, Lisa is that the gentleman you sat next to trying to get away from abnormal people has a quirk he tells no one. Someone broke into his family home five years ago, which changed him mentally forever. No one was home or hurt, but he felt shame because it was his duty to protect his family and belongings. So now, every time he locks the door, whether to stay or to leave, he must lock and unlock the door fifty times, adding hours to his other daily daddy duties. When he locks his car door, house door, the shed door, his office door, or any door in his life, allowing very little spare time for extracurricular activities.

Jim, you have been working hard and extremely tired when you get off work, but you promised your kids a trip to the movies. As soon as you walked into the theater, you sat in the first seats available in the area meant for wheelchair users. A family with a child in a wheelchair came in and asked you to move, and you quickly apologized and mumbled that you and your offspring should be sitting back where the normal people sit. You then started a conversation with a woman who snickered at your statement and was sitting next to you. Since the talk between you both went well, you asked her to dinner, where you learned that normal is not the norm and she is not as ordinary as you thought. 

A week later, you could not believe the coincidence of meeting a beautiful and normal woman at a movie theater at the restaurant. This meeting seemed like a one-in-a-million chance and was going exceptionally well. However, when you ordered your meal, and she placed her food request, neither of you paid attention to the other and you learned a lot when her food arrived. When you looked at her plate to see what she ordered, you noticed it was colorless and looked quizzically at this. Finally, you posed a query to this quandary and questioned whether you noticed that your plate is not even dotted with color and is simply devoid of it. Her answer was astounding as she said she only eats white food as it releases her brain from the less important mundane task of choosing food by color. She said this as if she was a mathematician who needed to think of more important things, so Jim, does that make her normal in your eyes? 

If you are talking to a mechanic, it is absolutely acceptable to say my car is not making the normal sound, but when referring to a human the word normal is off-limits. In my opinion, those who are believed to be the mythical creature called normal are truly not, and that is okay. I always say you do you, and as long as it does not hurt anybody, why should I be concerned? However, I feel everyone is a little off, a little odd, or a little quirky, and I think that is the way it should be as it makes the world a bit more interesting. What an absurd world we would live in if we were all exactly the same; in other words, we talked the same, walked the same, and even think the same, how very lame. So my hats off to those who are out in the open loudly weird, diabolically different, or oddly off-the-wall because I think you help make the world a better and unique place.

The world is full of all kinds of beautiful people, so let your disability freak flag fly. 

Now that we have rung in this New Year and flipped to the next digit to enter the shiny new Era, we need more. We should desire something to make us stand out from the crowd, as it is too easy to vanish into obscurity if we do not grow. In life, no challenge should define us like struggles do not say who we are as they are just a blip in our timeline. So every year, we should grab the tree of life, and with all the strength, we can muster and shake it. So if you have a lot of power, rock and rattle its branches until they crack, or if you have less vitality, vigorously shake the twigs and leaves roaring, I am here. We must not merely survive this game called life, but we must thrive like a cactus in the scorching desert sun.

The key to finding the new thing which will change your outlook on life is to consider your limits. You should stretch slightly past your comfort zone to prove to yourself you can do more. Find something you have never done or are not good at and do it. Studies show this builds your brain connections and can make you smarter and a well-rounded person. Find your neighborhood community center and look into taking some classes involving art or cooking. If age-appropriate, find a senior center, check out the schedule, and make new and possibly lifelong friends. If you pinpoint and take part, there are plenty of events for the low and even mid-speed abilities.

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 life’s lousy limitations. We have come so far in technology, and what was once impossible is now conceivable. Great minds have gotten together and figured out how to make most things work correctly, specifically for the disabled. We have all heard the phrase; there is an app for that. Now we can say there is an adaptation for that.

Adaptive sports include surfing, kayaking, skiing, skydiving, and the list goes on and on. No matter your talent level and abilities, you can ride a bike with a handcycle, or if you have the required skills, you can whitewater kayak. 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 or not limits you, and what the imagination can create for these sports can help.

I have always said: do not tell me I cannot do something because, with time and effort, I will make it happen. People challenged me to do a 5k in my wheelchair, and even though others doubted I would complete it, I was successful. Some said I could not do two and a half miles of swimming, yet I blew that challenge out of the water, and I swam eight grueling miles. There may be obstacles in your path, but you decide to allow them to stop you or not. 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.

Do not let your ailment stop you; do something despite it.

This blog is not MS themed, but I was reminiscing and thought it would be a good story to share. Many people, including a published author, have read my blog and suggested writing a book based on my blog and MS life. However, this story would not be in the book if there were to be one, though I am not sure I will write one. I hope you enjoy reading about my childhood memories as much as I enjoyed living them. During this happy yet hectic holiday season, I hope everyone stays safe and has a very merry Christmas and a joyous and jubilant New Year. I have family visiting, so I will post previous blogs through the holiday season.

What’s in a name???

I was very active in the Boy Scouts when I was a boy. So it was extremely common to find me packing for a camping trip as our Boy Scout Troop camped once per month. I enjoyed being surrounded by Mother Nature to meditate in her awe-inspiring beauty. These trips allowed me to escape the troublesome topics of my childhood and let me contemplate conundrums as they arose. I would, of course, have everything resolved by the end of the weekend like a TV sitcom. 

At one of our Scout meetings, our leaders said we would be inviting our moms on a moms camping trip. The scoutmasters wanted the mothers to see what their sons did and how they lived on a camping trip. Our leaders advised us to share with our moms they would be staying in the camp lodge. They warned us the boys would be cooking one meal of foil dinners for the moms. How scary and exciting this adventure would be for our moms and us.

I suppose I was in my own little world as I packed, although others might simply say I was oblivious to everything. I had a camping preparation procedure making packing a very systematic endeavor and I knew every time a particular leader went camping with us, it was guaranteed to rain. Since this adult was going camping that weekend, bad packers would have to work with wet woes and by then, I had been in the scouts for several years and could not make errors like that so I had to stand out as a positive example for the new boys.

Mike’s mom was driving both of the mothers, Mike, and me, down to the camp for the weekend. When Mike and his mom Sandy showed up, I loaded my pack into the trunk and got into the car. When Sandy saw my mom’s overnight bag, she asked, “Where are your things like a sleeping bag and shower items?” My mom explained she did not need it because they were sleeping in a lodge. My mom was sent back inside to get at least a couple of blankets and towels, and although baffled and bewildered, she complied. Little did my mom know what chaos would ensue during the weekend.

As we arrived at the camp, Mike and I grabbed our gear full of sleeping bags, clothes, and other necessities. We then began our conventional campsite construction routine, looking for a spot to set up our patrol tents and box loaded with our patrol needs. There was a requirement to find the correct location for the campfire to avoid trees and eliminate the risk of a forest fire. We were genuinely unaware of the developing discord the mothers were contending. 

The mothers arrived to see the retired rickety Boy Scout first aid lodge, which seemed to be held up only by force of habit. This rundown leftover hospital lodge was where they would live for the next three challenging days and two arduous nights. The moms walked in to find some rusted old hospital-style beds complete with plastic-covered mattresses from the 1970s. There was a layer of thick green mold in the sink and a chunky coating of blue-green mold in the tub to complete this science experiment structure gone gross. The lodge also had running water because outside, it rained significantly; the roof was punctured severely, and the ceiling leaked profusely. This excessive rain caused a flowing stream in the middle of the temporary ramshackle residence.

It horrified my mom, as she was ill-prepared mentally or gear-wise to deal with this ludicrous lodging. Finally, the moms slept on top of the mattresses on the cement floor. This idea was questionable because the floor had a small stream from all the rain—no wonder the other mothers were smirking behind my mom’s back. Well, at least she brought a blanket and her pajamas but it would be an extremely long weekend.

Saturday night for dinner, the boys made foil dinners for the moms. These aluminum packets had a hamburger patty and cut veggies with sliced potatoes made a full meal for one. The boys salted the foil packs, sealed them tightly, and placed them on hot coals to cook for 30 to 45 minutes. Although they were getting used to their new sleeping quarters, no meal cleanup took the sting from the crummy conditions. The moms felt filled with pride to see their sons in their element, and later, they enjoyed the activities around the campfire as well.

The mom’s camp-out was fun for the moms and the sons alike as the boys were in their element. The boys got some unforgettable, memorable, and hilarious stories we can tell our friends and children for the rest of our lives. My mom was the best because she gave us a list of funny material that would last well into adulthood.

Trust but clarify and verify by questioning everything.

I have seen a plethora of people on the internet, like YouTubers doing videos listing the top ten things in their lives. Each list is the essential items in their lives that add buoyancy and balance in a world smeared in a clunky coat of caustic careless Me-ism. These top charts detail everything important to them, from Yoga mats to yogurt snacks, headphones to smartphones, and even music players to music makers. So here is my list of irreplaceable items that make my life moderately manageable in my multiple sclerosis-loaded world.

1. Let me start with unquestionably the most essential item and the love of my life: my wheeled chariot. Without this magical manual mechanism, I would be bedridden and merely waiting for the end. I could do nothing without my wheelchair because I use it as my legs to get me from point A to point B. This chair helps me stay active by requiring me to propel myself from one place to the next. Keeping the body in motion is essential for everyone in life, and my chair demands I do just that. As I often say, move whatever you can as much as you can for as long as you can.

2. My microwave and hot plate help me stay independent and self-sufficient by making mealtime preparation easy. This pair of programmable products properly provides me the ability to cook the sustenance I need to merely stay alive. I do not have to stand above and peer into any cooking vessel, meaning this dynamically dazzling duo does everything at my eye level. At the same time, I am comfortably and safely seated in my wheelchair. I have even figured out how to cook dry pasta in the microwave without trying to maneuver a big pot of boiling water unsafely.

3. Internet banking is essential for keeping me in motion and encouraging me to stay self-sufficient in dealing with my money matters. I am a private person with problematic penmanship, and this cyberspace money place eliminates the need for check writing for things like paying bills. Furthermore, having instant up-to-date access to all banking activity is indispensable to stay on top of issues such as avoiding overdrawn accounts.

4. The local public transportation system for individuals with disabilities is imperative to make my soul simply satisfied. This transport operation is a minivan service that picks me up at my door and drops me off wherever I need or desire to go. The procedure is for a single client at a time, meaning there is no need to play the wheelchair shuffle at each stop. It is an outstanding operation opening the city to the disabled masses at relatively affordable prices, leaving no excuses but to get out.

5. The public library app is the next item that is a pretty paramount practice in my pilgrimage through life. I read books often, and the way for me to become a leader in literary learning is to use my library app. The app gives customers access to borrow nearly 200,000 free audiobooks, which is why I am thankful for this book repository. The free catalog of books makes me wonder why paid services to listen to audiobooks exist. However, even if you don’t have a local library, it is an app you can still use for free audiobooks. In addition, I understand their digital catalog frequently grows, which is why I continually use this fantastically free function.

6. My blog is also something that is meaningful for my mental mellowness and wellness. This writing process allows me to focus on productivity and positivity, not idleness and negativity. I could easily sit on the couch in my pajamas eating bonbons watching soap operas, which would lead to total body degradation. Many years ago, I did just that and watched my multiple sclerosis-riddled body deteriorate severely, so I never want to do that again. Instead, my writings allow me to verifiably vent and shamelessly share my experiences and maybe give others a nuanced understanding of how it feels to live with MS.

7. During this covid world, Zoom allows me twice a week to stay connected, benefiting my cognitive contentment. This interaction is via video conferencing with others from all over the globe, enabling me to feel less isolated. I live alone and get very little human connection, and this conference call grants me the ability to have much-needed communication where otherwise there would be very little. Email and texting are not terrible options, but Zoom is better for the psyche and gives a visible and verbal connection like nothing else.

8. My smartphone, computer, and intelligent technology are paramount to my true freedom. I can activate all astute automation remotely when connected to my smartphone or computer. It also makes these tasks simple because my wheelchair makes it difficult to do some things manually, and a verbal request to my smart speaker solves that. In addition, Wi-Fi connectivity means I can be anywhere globally as long as there is broadband.

9. The World Wide Web itself encourages me to maximize my life in various ways. The internet connects me to the outside world and makes all intelligent technology that controls my house possible. For example, my smart speakers are truth seekers, and being connected to the web helps them keep the peace in my writings. Some of my window blinds are electric because my chair footprint eliminates the possibility of manual control. I have connected lights, automated locks, and a TV that is smart, and also a clock. 

10. Music of all genres is vital to my total well-being because, with no music, the silence of my house is deafening. So, as I roll through my house, I do not merely want to hear the noise of the television as some people desire. Instead, I enjoy the rhythmic and melodic sounds of music echoing throughout the halls of my house.

A bonus 11th. Although not things, my fortitude and tenacity are fundamental to my existence. My ability to adapt and overcome the adversities set before me has made me a stronger and wiser person. It has made every breath I take exceptional and worth having, continuing to make me better, not bitter. As a perfectly pleasant person, my relationship with strangers and others alike is happier and healthier.

The above is a list of the essential items in my life I could not live without, both figuratively and, sometimes, literally. If any of these items were not in my world, it would be a much more laborious, morose, and darker existence in which I would not want to be involved. A friend once said: if you found something that could make your life 10% better, would it be worth it to you? These items make my life 100% better and are well worth the cost for me.

Find the things that can improve your life, even if only 10%. 

Some people with multiple sclerosis may not agree with my many muddled opinions about our maddening medical malady. However, all MSers can agree that MS makes little sense and causes chaotic confusion in our lives. The inexplicability of this medical condition gets magnified because symptoms vary widely, making complete understanding as elusive as a Vaseline-coated eel. Twenty years of experience and the riches of reading and research have enriched my interpretations. These facts have caused me to come to the beliefs in this blog.

Occasionally, I get asked if my issues are due to not taking the mainstream MS medications. In my opinion, my lack of movement caused my problems as I sat on the couch watching TV and did nothing for an extremely long time. If Dwayne The Rock Johnson sat on the couch and did not move or exercise like me, he too would deteriorate severely, although a bit slower. Most of us have heard a million times how a body at rest tends to stay at rest. This behavior causes physical station degradation is how the line should finish.

I talked with Tom about this topic, whom I met at a local MS support group nearly twenty years ago. He told me I was not correct because he may go a week or more without moving, and his muscles do not atrophy like I say mine did. I quickly explained that his idea of not moving and mine is not the same as I believe he moves more than he says. I invited him to compare his supposedly stagnant week to my seriously sedentary season to show him how he moves more than he thinks.

“OK, Tom, everyone starts the week on Sunday, so let us begin our comparison on the first day of the week.” “That sounds reasonable,” he told me. “Is that a day of seated stagnation you spoke about, Tom?” “Yes, Scott, Sunday is my first lazy day of inactivity of the week and no muscle degradation so far.”

I did not want to burst his bubble, but I know his wife, and she can tell when he is hurting or merely wants to slack off and will not let him do so. However, I plan to ride this bus until the wheels fall off and he changes his understanding and comprehends my perspectives.

“So, Tom, do you go to church with your family on the agreed day of worship? Because I know your wife, and I know Angela will not let you stay at home while she and the kids go to church without you.” “Yes, Angela, the kids and I go to church together, but we sit in the car and church, so I am still correct.” “We will come back to the discussion of your wishy-washy walking ways in a few minutes. If I remember correctly, Angela likes to go to lunch after service. Does that still occur?” “Well done, Scott, I suppose I am more active than I thought on Sundays, but not all days are like Sunday.”

“Tom, let me share what is truly meant by an unmoving planted posterior also starting for me on Sunday. I woke up on the couch, and I did not go to church because I felt my friends and God had abandoned me.” “Scott, your friends, may have left you, but you know God did not.” “That is irrelevant because those were my feelings, and my actions were in response. I woke up on the couch and started watching TV, not moving until late morning when I had a tiny four-ounce bowl of cereal and ate it on my temporary bed.” “Compared to Angela and me, you honestly moved very little.” “That is an understatement since we are not even at noon yet. So after eating this menacingly minuscule meal, it was more moody malingering for me. At five, it was time for another sadly small-scale eating session. Drain a can of green beans and add a bit of Italian dressing to the can, causing no dirty dishes.” “WOW, much less movement than I thought, Scott.”

“Well then, is Monday your next slight stationary stay day Tom?” “Yep, and this one is truly a sloth-like day with napping, very little moving, and all that entails.” “Well, let us see. You wake up, and what is the first thing you do in the morning?” “I slept in until 7:30 am, then I got up and went downstairs to the kitchen. Angela made muffins, so I made coffee and sat at the table, had a cup of Joe, a muffin, and read the paper.” “What is next, Tom?” “I go downstairs to the TV room and start watching some morning talk shows. Then, at about 10 am, I go get another muffin and a coffee refill before I enjoy several movies back to back and even a nap.”

“OK, Tom, let me stop you at the midpoint of your day to point out some key factors. First, walking up and down a flight of stairs is more exercise than merely roaming room to room. Second, you have a three-story house, and you use all three floors daily because you sleep, eat, and watch TV, each on different levels. That is a lot of movement for a day of inactivity. This example shows why your muscles do not atrophy as mine did.”

 “I see your point now, Scott. I suppose there is no actual point in continuing our comparison competition as you have won.” “It is not a contest where I win, and you lose, my friend. It merely shows how we all behave differently with this condition, and no matter the case, multiple sclerosis operates, however it wants in each of us. Sadly, we all suffer severely, so in fact we all lose.” He wore a sad facial expression, so to lighten the mood, I said. “And yes, it also shows I am a winner, and you are a loser.” he looked at me sternly, and I thought I crossed a line until he smiled and called me a show-off, and we both laughed.

Walk a mile in the shoes of others to gain genuine understanding.

I have been using a 15-year-old desktop computer to write these blogs that many have loved. Of course, some things come to a crashing end, and my computer has, so I am having a friend set me up anew. He is not an archaeologist, but hopefully, he will still have me up and running lickety-split and back on track. Alas, the post for this week is an “oldie but a goodie,” though it is brand new for a few of you. Rest assured, my next blog is good and all new and will remind some that not everything is what it seems. You think you know, but you have no idea.

How to spot a fake disabled person…

If you are reading this post to find out the clues I can teach you so you can spot that faker, then read on. For example, you saw a person park in the handicap space and walk inside unassisted, so you want to call them out. You might have observed an individual use a wheelchair one day and a cane a few days later, and you want to bust them. Well, the truth is: LEAVE THEM THE HELL ALONE!

People with disabilities can have physical challenges that are not visible yet cause struggles you could not 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 in tears for hours. This abuse was after she felt exceptionally jubilant because her illness had her bedridden the previous four days, and she was finally in a bipedal propulsion position.

Just because you see a person 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 a rock the next day. When you see a person park in the handicap spot and walk in the building with no mobility aid, they could have a heart condition. These invisible symptoms can be as numerous and varied as fish in a lake, meaning: LEAVE THEM ALONE!

The truth is I have heard whispers of a widespread scam of people faking disabilities, and it is simply not true. I heard one person say they let these fakers know I see them so the real disabled can park there. Then I asked him what an individual with a disability looks like, and without giving him a chance to respond, I stopped him. I explained he might have good intentions, but in fact, he is probably about to ruin someone’s day. We cannot spot a person with a disability in a crowd like a guy wearing a fluorescent ball cap. Some people with disabilities stand out because of a medical device like a walker, wheelchair, or oxygen mask. However, many have unseeable disabilities that need your love and support, not condemnation and criticism.

The ignorance of society and the way entitled people can treat others simply makes me sad. To all those 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.

You may think you know, but you have no idea.

Before the pandemic, I pondered periodic pithy peregrinations to various places around the country. Yet, before I embark on one of these journeys, I must make unexpected arrangements. For a person not living with a medical malady, preparations for a trip are an effortless endeavor. However, it is crucial to be meticulous when making the same provisions for a person with any ailment.

In 1910, Lieutenant General Baden-Powell started the Boy Scouts of America. The motto he used was “Be Prepared,” yet it is not only the Boy Scouts who use this motto, reminding us of the importance of preparedness. We need to be ready for anything in this MS life full of unpredictability, uncertainty, and ambiguity. Therefore, it is crucial for us to carefully contemplate and consider our every move, whether picking, packing, or planning. It is true everyone would benefit from methodically scheduling and booking for an extended excursion. Yet, the mismanagement of time for a Non-MS individual may only cause a minor inconvenience.

For many MSers, time miscalculations can cause extremely adverse outcomes no one wants which to contend with. Some key factors need to be considered when I take a trip, such as the time and reasoning for said travel. These seemingly simplistic standards change everything I need to do to prepare for a plethora of possibilities. All aspects of packing, planning, and scheduling have to be changed depending on the reasoning of the excursion. Of course, it changes how much clothing, medical supplies, and other necessities I will pack. I even need to plan whether I am visiting a person, place, or thing.              

I must keep the weather in the forefront of my mind, focusing specifically on the temperatures I will probably encounter. For example, will it be hot enough for my cooling vest, or will the low numbers on the thermometer deeply dip, demanding winter wear? Also essential is if it is rain, snow, sleet, or hail in the future, it is vital to prepare for any form of precipitation.

Will this be a simple overnight excursion or an expedition, including multiple days that I am planning? There are other issues to examine for each, like the amenities I will stay in are definitely of significant concern. The bed must be lower to the ground for me to transfer to and from the bed safely. It is a requirement there is a shower chair with a back wherever I bathe and a transfer board to aid my transition. The last mandatory item for the bathroom is a toilet that meets ADA height and space requirements for maneuverability.

A map of the area or basic knowledge of the surroundings is valuable information to have. For example, do I know where the closest hospital and pharmacy are compared to where I will stay? Also, since we all like to eat, what is the locale of the non-fast-food restaurants, and are they wheelchair friendly?

These tasks may be overwhelming to the inexperienced, but my wheelchair felt awkward initially and is now second nature. In most cases, one phone call can resolve many issues all at once, while in this connected world, a search for this type of information is straightforward. Finding these facts is like playing hide and seek with a four-year-old as they take minimal effort to find.

If you fail to plan, you plan to fail because even Santa Claus makes a list and checks it twice. I am sure the man in red made a few mistakes initially, so do not fear missing something. I learned to Be Prepared in the Boy Scouts and how those two words can rescue you in a tight spot in the Marine Corps. As an MSer, you learn how living by the motto can help save lives.

We must prepare and prevent, not repair and repent.

My friend John recently told me I was an inspiration, but others have previously said it as well. Although his kind words humble me, I do not feel like an inspirational person as I have only done things others frequently do. Yet, my friend explained I have a great attitude and jovial disposition even after conquering adversities precariously placed in my path. For example, was it the 5k I did in my wheelchair proving to a buddy who all but dared me to take on such a courageous conquest? Or was it the eight miles I swam without the aid of my lethargic lower limbs to raise money for a charity that causes me the continual compliments. Maybe it was leaving the US Marine Corps a disabled vet and not letting that stop me, as some before me have done.  John shared that those things and others gave him these feelings of revelation, motivation, and adoration.

I explained to John that I was not trying to impress or motivate anyone but simply do what I needed to live my life to the fullest. I know several non-disabled people who sit on the couch making excuses while watching kids grow, friends go, and life blow. I do not want life to pass me by, plus my monstrous MS malady has gotten worse every time I sit too long in one place.  I do not feel like an inspirational person but let me share a few stories of those who inspire me. These individuals motivate me to keep moving forward and allow nothing to put a horrific halt or hamper on my headway.

A soldier named Travis Mills came back from the Iraq war after an IED explosion incident.  He was the fourth quadruple amputee who came back from this war, and although he was lost mentally briefly, he quickly got it together. Most would have understood if he played the sympathy card upon his return; however, that is far from the case. With his wife and family by his side, currently, he does more in one day than most of us do in several days.  He speaks with all returning veterans, mainly focusing on the severely wounded, showing what a positive attitude can do.  He has an exercise training regimen rivaled only by die-hard fitness trainers.  He also wrote a book sharing his life story and does book signings showing no signs of slowing.

There is another man who was on the X-Factor named Immanuel, who is physically debilitated and unsure of his birthday. Immanuel and his brother were born in the war-torn country of Iraq, where a nun found them in a shoebox. They were adopted by an Australian family who showed them the love and affection they deserved as infants. Even though he is ambulatory, his legs and arms are not in great physical shape, although his smile puts most to shame. Nevertheless, he stood on the X-Factor stage with a slight tilt and great lilt and sang a beautiful rendition of Imagine by John Lennon. Faced with life’s difficulties, he stood up and stood out when so many would have hidden in the house.

Another person who inspires me is Kenya Sesser, a woman born in Thailand with no legs. She was an abandoned baby left on the steps of a Buddhist temple in Pak Chong, where monks raised her for the first two years of her life. After four years of foster care at six, Kenya was adopted by an American couple living in Oregon. Now living in Venice Beach, CA, she has a resume that puts others to shame, including modeling, acting, surfing, skateboarding, and being a Paralympics athlete. Sesser shows how a can-do attitude can get you very far in life when you take this brick wall of no legs and find ways around it over it or even through it. With no legs, she stands taller than most full of pride and reminds us all to look directly at our issues and say, get out of my way.  

Nick Vujicic was born with no arms or legs in Melbourne, Australia, to two loving parents. Neither he nor his parents knew what kind of life Nick could even have in the early years of his life other than constant and continual care. However, his severe struggles and significant setbacks did not keep him from achieving seemingly unattainable goals. Nick Vujicic has become a powerful motivational speaker who speaks worldwide, reminding people never to give up. He has written several books and is raising four children along with his beautiful wife. When confronted with his physically challenged life, he accomplished much more than anyone could have imagined. The question he often asks his audience and I ask you now: what is your excuse? 

These are just a few of the inspirational stories helping to encourage me on my road of life. There are a plethora of stories in this world of people showing true fortitude against personal hardships.  If someone was inspired by something I have done or said, then I am humbled. I have been inspired by people I have met along the way, although they were also merely doing what they had to do to make it. Life threw a monkey wrench into their lives, and they regrouped and reengaged to accomplish their goals. I feel everyone has a challenge or two pertaining to their lives, and so the question is, what are you willing to do to complete the task?

If you can’t find inspiration, be an inspiration.