From Olympian to Whimpian…

This one is about the fellas, as 75% of those diagnosed with multiple sclerosis are women. Although both men and women are afflicted, the mental effects for men can be significantly different for various reasons. Most men are taught things like “Don’t you cry, boy!” or “act like a man” or other excessively masculine directives as they grow up. These comments sit with us deep in our psyche as we try to fit the societal role appointed to us as we enter this life.

So my feeling is that men with MS are affected differently when our bodies do not cooperate, as this requires us to ask for help. Some of us feel like it shows weakness in the eyes of others when we cannot do the basic things we once did. It is devastatingly discouraging that I have had to call that triple-digit rescue number many times as a big bad US Marine. When I call, I am pleading once again for help off the floor like a newborn baby who can only crawl, so my pride takes a hit. So, people need to understand that multiple sclerosis is demoralizing, dehumanizing, and demasculinizing. The crushing mental aspect of MS can make a man feel less than the man he once was, negatively affecting his attitude, personality, and demeanor.

I was always an extremely active young boy from an early age, playing outside until the streetlights came on. We did not have video games, computers, or cable tv to keep me in the house all day. Instead, I had a bicycle, an imagination, and a neighborhood to run and play in to keep me active. In addition, my dad had a garden full of vegetables like cherry tomatoes which my friends and I could eat when hungry. Filling our tummies with tiny tasty tomatoes from the garden made for a refreshing snack, letting us get back to playing quickly.

At ten and a half years old, I joined an extremely active Boy Scout troop. We camped one weekend every month, one week in the summer, and had two-hour Scout meetings every Monday. I began a five-year career as a Boy Scout camp counselor four years later, working six weeks every summer. A year after my summer camp job started, I went on a hiking trip with twelve boys and four adult leaders. We backpacked, hiking 100 miles in 12 days with full packs in the southern part of the Rocky Mountains. All the while, I was always helping people when needed and always doing things for myself, like cooking, bike repairs, and anything else required.

I quickly became good friends with Mike from my Boy Scout troop. We went everywhere on bicycles, tracking more miles on a weekend than many people did all week. I even got a job at a local McDonald’s, just over four miles away from my house, and I rode my bike to work, rain or shine. I was on the wrestling team for a while, but my Boy Scout life took precedence because I was too deep to stop and soon became an eagle scout. During my senior year of high school, I pre- enlisted in the United States Marine Corps and regularly exercised with the other enlistees. Three months after my high school graduation, I shipped off to Parris Island, South Carolina, for the USMC Bootcamp. 

During my time in the Marine Corps, I learned what hard work was while I trained in many aspects of my Marine job. After the Marine Corps, it was more of the same running for cardio and weight lifting for muscles. Helping people move, maintenance, and lawn care for my house were the two main things that never seemed to stop. At 26 years old, my friend Mike began training me to run my first marathon, as he was sure I could run one as he had run eight marathons in total. Like a shark who needs to swim to stay alive, I was always active throughout my life. 

However, that all changed at 27 when I was diagnosed with multiple sclerosis, and my life was never the same. This illness eviscerated my manhood like a hungry lion taking down a gazelle on the Serengeti. I fight every day to hold on to any shred of dignity and masculinity not taken from me, yet sadly, losing this battle is not uncommon. This ailment is not for the faint of heart as it can easily steal every ounce of your physical, mental and emotional well-being. MS takes these things without regard for anything I care about, like my health or comfort, and it disintegrates my abilities.

I do not want to speak for other men, but this lack of ability to help others and do many things for myself tears me up inside. I live alone as independently as possible, and I have had people tell me it is incredible that I live on my own and do as much as I do for myself. I know men with MS who do the same thing, and I applaud us all. However, I die a little inside every time I give up another inch of ground against this brutal beast that battles me daily. I believe men do as much as they can because of the teachings from childhood, but it is a tough life to deal with MS. Life dealt us a hand that is an immoral illness that often makes us feel inadequately inferior. It is not right, but there is nothing we can do but continue playing the hand dealt to us.

On an emotional roller coaster for a Horror Story illness.

Saying farewell to my old life… 

One week contains 168 hours, and we sleep approximately 56 hours. If I am lucky, I have an aide here for 6 hours, making 6,360 minutes per week that I sit in these four walls in solitary confinement. I have no one to talk to in this cold isolation of abandonment, although some people say they love it when their family goes on vacation and leaves them at home by themselves. Father time does not stand still for anything, and for that matter, as the clock gets older, it seems to move faster. The only way to get time to slow down is by staring at a clock face, but then you do not get to live your life as I have stared at the clock for too long.

This joyous feeling during the family vacations is because they enjoy the quiet of getting away from the hustle and bustle of family life, even if only briefly. However, although being at home solo for a week is delightful, being alone for over a decade is dreadfully debilitating. If you conjure up the worst-case scenario of being alone in your mind, you still cannot conceive or perceive what it truly feels like to be alone. Therefore, I can not and should never return to the life-threatening darkness of my early MS days.

So as I sit and contemplate this complicated conundrum, I question if there is more to life? I cannot believe this vast nothingness is all there is for me for the rest of my days. So I searched Columbus for activities for me to help ameliorate and eliminate the loneliness and desolation in my heart. People tell me there are many endeavors to be involved in, in town, and I agree there are many things to do in Columbus. 

However, these activities may be plentiful for people without disabilities, but they are scattered far and wide, making them hard to find. In addition, because these activities spread so far, it makes being involved in one difficult, let alone more than one activity, with both weather and lack of transportation a limiting factor. Others have told me I should get a pet because a pet would give unconditional love. However, I do not want a pet; I want a LIFE.

I tried to think of all of my options every day to determine what I could do because, sadly, neither friends nor family visited me regularly. Daily I struggled to conjure up something I could do to eliminate my boredom drenched in loneliness, but there was nothing. There had to be something to keep me from visiting the dark place smeared in my tears of so long ago. So I sat here one day pondering my prolific problem, and in the back of my mind, I heard my mom’s voice. Since retiring, my mom told me she has been busier now than when working, and it kept playing in my memory. I would constantly hear her reminding words while I muddled through my day.

I honestly had nothing to spend my money on while locked in this house during the pandemic, so I got an idea. Because of this lack of required spending, I put every spare dollar I had to pay extra on my house. I am not sure what the reasoning was for this idea, but it was simple to put in motion. When my house payment was due, I made sure I paid my bills, and grocery money was untouched. 90% of the money I had left I added directly to my house payment, leaving me with growing equity for future possibilities. I felt like a squirrel hiding money, except it was on my mortgage and not in my house.

I assembled my ideas and postulated possibilities of a prolonged relocation peregrination. Then, one day I thought about the concept of moving to a place more active, giving me a more enjoyable life. Would it be possible to take the equity in this house and purchase a home in a new state, making it affordable as housing prices continue to rise? So I researched places in Florida where the sun shines more, and there are more activities and more people, simply more. 

The more I thought about it, the more of a reality it became, so I decided I would move in October or November. This delayed departure would allow me to get stronger in the pool and say goodbye to friends. It would also allow me to arrive after the heat of the summer and will enable me to acclimate to the temperatures more slowly.

 I am optimistically terrified of my next adventure!

Living visibly invisible…

I find it annoying when other people are with me in public, but let me explain so you can see exactly what I mean. It is not because I do not want to spend time with people, because I absolutely do. My perfectly perplexing problem is how quickly I become invisible to others around me. I have found that if I do not speak first, I get ignored like last year’s Christmas toys pushed to the back of the closet. Here are a few examples of stories to understand my daunting dilemma.

My dad was with me at the bank as I was trying to authenticate and then close a loan account. Immediately, it started with the banker, who was ignoring me and speaking directly to my dad. Every question the banker asked, my dad looked at me, and I answered the banker like a bad three-person ping-pong match. My attitude was after my dad explained for the third time that this was not his account and he was merely transportation, yet this ping-pong game continued.

I wanted to nip this in the bud before we got further into the conversation, so I quickly spoke up loudly. Since this is my account, I asked the banker to talk to me directly. I explained how I live alone and handle my bills like a big boy, and I would prefer to keep it that way. Although I tried to be polite, I had a slightly sardonic sound in my voice. Surprise and a bitter smile smeared in condescending sympathy shown on her face after my brusque plea. However, I think she finally got my point because she apologized and took me back to a desk to talk one-on-one.

My friend Ted and his wife Amy invited me to dinner to celebrate Amy’s new job. As we waited to be seated, I received the typical looks of pathetic sympathy from several people waiting to be seated. A few kids stared at me, and I simply made funny faces and acted goofy until they laughed, as I have always been able to make kids laugh. Finally, the hostess took us back to our table, where we waited for our server to take our orders. When she arrived, Ted asked if she would take our food and drink orders right away because our group was famished.

The server took out her order pad and began scribbling as Amy gave her dinner desires. She then looked at Ted, and her pen continued to dance across the order pad as he detailed his meal request. The server finally looked back at Ted and asked him what I would like as she nodded her head in my direction. Ted quickly spoke up and told her to ask for herself because I was sitting next to her. When the server looked at me, I promptly spoke loudly in a little kid’s voice while holding a spoon in one hand and a fork in the other. I want pasghetti, I proclaimed emphatically, like the petulant child I was pretending to be. I could see the big smiles on Ted and Amy’s face, making it hard for me to keep a straight face.

The server looked flustered and, with a worried expression, said we do not have spaghetti looking back and forth between Ted and me. I could see that Amy was rifling through her purse because she was trying not to laugh and hiding it the best she could. Although I spoke loudly, it was not loud enough that the whole restaurant could hear me, while only a few tables close to us could listen to my whiny uproar. I soon chanted pasghetti, pasghetti, pasghetti, making the server flustered and teary-eyed. However, I did not want her to get weepier, so I said in a clear voice, “If you do not have spaghetti, I will have the seared salmon in the herb butter sauce.”

Amy and Ted roared with laughter as the server stood dumbfounded, not understanding what had happened. I quickly explained to the server how her actions and assumptions were demeaning and disrespectful. I shared that if she was going to work in a job requiring her to interact with the public, she needed to be more respectful and accept those with disabilities as people. It was vital, I feel, for me to show her assumptions and just how wrong they were. She apologized and explained that she had only been a server for three months and had not experienced interacting with anyone in a wheelchair. Well, now you know, I said.

I could stand on my soapbox and tell hundreds of stories like these, but I have no box of soap, nor can I stand. The truth is when in public, the guy or gal in the wheelchair often gets ignored if not shunned and chagrined, so I try to speak first and loudly to avoid the ignorance of others. I have also experienced those who speak down to me, although someone told me they simply do not know how to act. If that is the case, error on the side of respect, not neglect, disrespect, or any act of superiority. Society is getting a little better at accepting those with disabilities in everyday life, although we still have a long way to go.

Treat everyone, including the disabled, with the same respect as the CEO.

Pie of the Tiger…

People periodically pose the query: can I cook, and what types of food do I like to make? I quickly explain how things are now pre and post MS regarding my cooking skills. For example, I could cook very well pre MS, and I received many complimentary accolades every time I cooked. I shared how I prepared meals using the stove and oven from a young age and not merely assembled cold-cut sandwiches. I learned how cooking is like art, meaning if you dislike something, simply omit it from the pan. On the other hand, baking is like chemistry; it will not bake correctly if you do not add everything. From the age of thirteen, I was cooking for my mom, so she could simply sit and scarf, no fuss, no muss when she got home.

Since we did not have cable, I vigilantly viewed many cooking shows on public broadcasting television. I observed these shows, soaking up every drop of education they served, becoming an outstanding student. They educated me on the difference between making onions translucent and sauteing them and how to sear, stir-fry, and even when to bake versus broil. In addition, these instructors shared how to steam and not boil your veggies, as you should be able to eat them with a fork and not drink them through a straw. I learned so much about cooking as a young boy that I became pretty good at it. Cooking became second nature to me, meaning it was as easy as tying my shoes. I cooked not only for my mom and occasionally friends but also as other situations would arise. I was extremely good at cooking and baking, doing whatever the case demanded.

I was so creative with my provision preparations that it amazed others that a middle schooler cooked it. In the beginning, I made magical meals like an open-faced beef patty sandwich topped with broccoli and provolone cheese. I knew how to steam the broccoli, so it was hot but not mushy, and how to superbly season it with salt. Then, my favorite high school teacher got married, and as a fourteen-year-old boy, I made her a gift basket to celebrate the occasion. This offering had a loaf of my homemade zucchini bread, homemade chicken noodle soup, and a bottle of sparkling wine.

Mostly, my multiple sclerosis has eliminated the idea of actual cooking from my brain. Also, I do not want to put in any significant effort for cooking or cleanup because I am only one person. My multiple sclerosis put me in my charming chariot, making stovetop or oven use literally as well as figuratively out of reach. “So what, pray tell, do you eat?” was their query, and I explained it depends on how I am feeling, meaning how much energy I have. I have stepped up my eating game from the days of eating poorly since I had no money, and now I am in a much better place mentally and financially. I now use a hot plate when I need to cook my food just for the record. So let me give a few examples of some of my current go-to meals.

Go-to meal number one: soft chicken tacos. I take three flour tortilla shells and heat them in the microwave one at a time as needed for twelve seconds to soften them. Next, take a heated taco shell and place a line of chicken pieces and an onion and pepper blend in the middle. Next, add some shredded cheese and a spoon of salsa to taste and make a tasty Mexican-style soft taco entrée. I have all three with a can of seltzer water to make a satisfying meal complete, making more if I am extra hungry.

My second go-to meal is shrimp and pasta. I buy pre-cooked shrimp. I cook my choice of pasta in the microwave, although I usually use penne pasta for this meal. Once the pasta is ready, I place it in a bowl and add the amounts of my choosing of sun-dried tomatoes, black olives, Feta cheese, salt, and pre-cooked shrimp. Lastly, add Italian dressing and then place the bowl in the microwave and heat for a minute or two until it is your temperature preference. I serve it with a side of cold seltzer water, and I have a simple and flavorful meal, so I eat and enjoy it.

The next meal is chicken quesadillas. Again, I use my hot plate for this one. I put frozen chicken strips in a small bowl, add the pepper and onion blend, and microwave for one minute. Then I take one midsize tortilla shell and put it in the microwave for twelve seconds to soften it up. Leaving the skillet turned off, I immediately assembled the quesadilla in the pan. I place one tortilla shell in the skillet, and on one half, I lay sliced pieces of chicken and add some of the pepper and onion blend. Next, I add shredded cheese to my liking and several leaves of fresh cilantro on top of the cheese.

Keeping the unused side bare, I fold it over onto the other side and hold it down for a few seconds. I set the temperature at about medium and let it sit on the first side for seven minutes before I flip it. Once I flip it onto the second side, I let it go for another three to four minutes, as I like mine a bit more crispy than some. Once it is crisp enough for me, I put it on a plate and serve it with a bowl of salsa and seltzer water, completing another delicious Mexican-style meal.

Thanks to WOSU television, my cooking education was extensive and varied. I watched these Italian, Mexican, Japanese, and even southern chefs cook foods worldwide. My mom, of course, fed me well through my childhood, as I always had three meals every day. However, there were many times when she was still at work and would not come home simply to make me a snack, and that was abuse if you asked me. Nevertheless, I ate great goodies during those times because I had the needed skills to cook and the required appetite to eat. All of that WOSU food education affected my entire life when it came to mealtime, and I would not change it for the world.

If all else fails, there is always cold cereal.

Living in an app world… 

I have spoken about how technology has advanced and helped us in life tremendously. I told how fantastic futuristic inventions have made my life significantly better in various ways. For example, it has helped me open and close blinds that are out of my reach and let me answer the doorbell without being at the door. Using this tech verbally, I can set a reminder, check the weather, listen to music, phone a friend, or even call for help. In addition, I can turn on lights or the television, open the garage door, and turn on ceiling fans with these advancements.

When I was a kid, I knew a senior woman who desperately depended on others for everything. She could not drive a car, and her handwriting was hideous, making her dependency on others even more essential. She needed these assistive people to transport her everywhere she desired to go shopping, like groceries and clothes. Others even helped with her many money matters and assisted by writing her checks, paying bills, and opening and reading her primary mail. 

I am a very private person who does not want to break the privacy palisade. However, it is easy to keep my things confidential in this world of “there is an app for that.” I have banking, scheduling, budgeting, and even delivery apps. My app list has a library app, a photo app, and even an app for reviewing all apps. These applications, secret or otherwise, make it easy to keep a dividing barrier between private and public information and help me manage my life with ease.

My banking application has a variety of skills, like it allows me to pay my bills by setting them up to be paid automatically or as needed. I can write checks, pay individuals, or schedule a transaction for a later date. Using this banking function, I can transfer money or send a cashier’s check anywhere and to anyone, all with the cell phone in my hand. My online financial institution is also open 24/7, so I can occasionally call if an account query puts me in a quandary.

I have food delivery apps that will deliver dinner from a diner at dusk or other forms of food on Friday. In the past, I needed treasures for tipping and papers for purchasing, but that is a part of history as technology has raised modernity to new heights. So instead, I open the app for groceries or mealtime and pick what form of food, where I want it delivered, and when to consume it. The application holds my details, including address and payment method, and even allows me to tip all with the push of a button, meaning no longer is there a need for cash.

When most people grocery shop at the brick and mortar store, they can roam like nomads wandering through the desert. If you forget an item, that lazy stroll through the store might give a needed reminder to aid your brain box as to what that missed item is. You cannot stumble upon a hint while gliding through the aisles when ordering groceries through the app. The application will suggest things like hot dog buns, chips, and drinks if you buy hot dogs. On the positive side, a plethora of purchases provoked by hunger will not happen while using this grocery store app. 

There is an app for delivering a delicious dinner, a luscious lunch, or for that matter, a meal at any time of day. Many restaurants offer their menu through a delivery service, yet the choice is yours for whom you should use. There is a lengthy list of restaurants that use a delivery service, and the list is growing by Leaps and Bounds. So whether you want food from a Sports Pub or a meal from a white tablecloth restaurant, the options are plentiful. Finally, a similar systematic strategy for setting up these applications, downloading, signing up, and giving them the address makes it simple. It is unquestionably that easy. 

When you are hungry and want a snack, it is really that simple: just open the app. Find the restaurant whose food you crave and go crazy with your order, like you live in a cave. Merely browse the menus that they offer and find the enticing edibles, and they will chauffeur. Once you have the vittles from the restaurants you fancy, sit down at the table and eat carefreely. 

At that point, your order sets a series of events in motion, all from that one button push that manipulates mealtime forever. First, they send your order to the restaurant to begin prompt preparation to execute expeditiously. Then, before your order is ready, they send a message through the delivery app to let drivers know it is available for diligent delivery. Then a driver comes to the restaurant and picks your meal up for a quick quest to find your house. While being transported, you can even track the driver in real-time through the app’s technological advancement. 

Gone are the requirements of getting dressed, entering public, and having a sit-down meal. Instead, you can have fast food for one or slow food for ten, and all delivered quickly and conveniently to the location of your choosing. I feel I was born at the right time, as I love my independence and require no help from others for tasks like these. I cannot wait to see what technology comes up with next.

The cashless world is now.

My 2022 is so bright I need to wear shades…

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.

Call me maybe…

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.

Eskimo snow…

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. 

Dear people with disabilities… 

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.

What’s in a name???

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.