Cupid, where are you???

All of us need to be wanted, or is it we want to be needed? No matter the case, as humans, we are built to love and to be loved. I heard someone say everybody’s got something, so stand tall with your issue and help others learn and maybe even comprehend. That being said, romance and multiple sclerosis have been a significant discussion point with MSers for an extremely long time. I have a deep-seated fear of dating, like a schoolgirl watching her first horror movie. So knowing I am as confused as many on the topic of love, I thought I would discuss it from my point of view.    

The definition of love is subjective, although some may say it is nebulous. For those of us with any medical conditions, the idea of love is a twisted, torturous topic no one wants to discuss. This concern of finding our forever love depends on one’s personality and willingness to put themselves out there for the world to see. These issues also depend on their symptoms to the viewing public or even a potential date. It may be easier to discuss less apparent symptoms with a companion by making funny statements like “occasionally I move like a weeble-wobble and may need to sit down before I fall down.”

However, my MS is more impactful, like my visible-to-the-world wheelchair, which is impossible to hide. It could be my less than obvious distance vision concerns or any of the myriad of MS maladies plaguing my life. I am unsure how my MS will impact my life since I rarely get out during this pandemic. I have always been shy, and my multiple sclerosis and wheelchair have pushed my trepidation to heights unknown. This mechanical monster securely stuck to my rump like a chump is not like having a cool car or nice clothes to attract someone.                       

Another commanding concern is that I do not drive, and the idea that I must ask for a date to pick me up for our dinner is dreadfully difficult. It makes me feel awkward, like if I was asking my partner to cut up my steak. It is annoying enough requesting a date to deal with a guy in a wheelchair for a few hours through dinner and a movie, let alone long term. Society is now accepting the disabled in everyday life, so I wonder if handicapped parking is enough of an attraction for a female suitor.

Coping with wheelchair life is not for the faint of heart, and I fear burdening a potential girlfriend by putting that anchor around her neck. This feeling weighs heavily on my heart, as I cannot imagine adding my defective deficiencies to a woman’s life for a short or long timeframe. Whenever I see a woman I would like to ask out, a video plays in my head of her yelling and telling me she did not ask for this. These thoughts terrify me to the core and encourage me to avoid any probable plight permeated plans to stay safe.

I run a nonprofit organization and discussed business with a woman who had given me her business card. After several minutes, the conversation became more social, and soon, unbeknown to me, she became a little flirtatious. As she walked away, I heard her say something like text me and my friend, sitting close enough to hear everything, explained how I easily could have asked her to dinner. I tried texting later and must have said the wrong words because I never heard from her again. This situation proves I am going to be the biggest downfall in my romantic life. I would love to say this was a rare occurrence of my ignorance, but it is more common than uncommon.

I have tried the anonymity of online dating and found I did not have the right words to woo any of the women to simply respond. I do fancy myself as a budding logophile, but I do not even possess the verbal skills needed to attract a starving dog with food. I contacted many women but apparently did not use the correct words to encourage any response, not even merely saying go away.

I thought being anonymous during my online search, in the beginning, would allow them to see me first and not my chair. I assumed if these women heard the fumbling and bumbling guy I am, I would sound like many guys. Sadly, I did not have time to talk to them because they never replied to my messages. So, alas, I am not an internet dating guy.

They say love is hiding behind every corner, I must be walking in circles. I get down on my knees and pray I will not be single forever or even much longer, but who knows if that will help. Others often tell me I am a good-looking guy with a super smile and have a lot to offer, so maybe I am simply overqualified. I wish this dating thing felt less like swimming in quicksand and more like swimming at the local pool because I can definitely swim. When I was on the assembly line for my creation, confidence was on backorder, and they upgraded my smile instead. These facts have not helped my shyness nor helped any part of my life except at job interviews.

I was always the guy helping others, whether it was giving a hand to a friend who was moving, carrying groceries, or even assisting a stranger to push his car to the side of the road. Currently, I cannot do minor or major things for people, let alone do anything for a potential girlfriend or wife. This situation makes me feel shameful, embarrassed, and even a bit inadequate. They say there is somebody for everyone in the dating world, and mine is probably pulling a push door right now. I hope she is not in Taipei or some other faraway land because long-distance travel is improbable for me. All of this means loneliness might be my wife for the foreseeable future as I think about who I was before and see who I am now.

Are you struggling to find your mate? Remember they are looking for you too.

Unexpected inspiration…

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.

An attitude of gratitude…

I am a ridiculously nice man I know this. Until… The following is a true story.

My Google Home device: *ding* I have a reminder for Scott

Me: Hey, Google, what’s up?

My Google Home: I have a reminder called you have a doctor’s appointment in 4 days.

Me: thank you, Google.

My Google Home: thank you for thanking me. I guess we are caught in a thanks loop…

I think I broke my Google home device.

I believe the key to happiness is genuinely twofold.  First, you must wear a smile and have gratitude for everything in life, whether big or small.  This attitude means no matter what happens, keep a positive outlook and always have a sparkling sunny disposition. Second, when you need help and require assistance, people will be willing to assist you if you are gloriously glowing.  Grumpy Gus’s get bitter rejection when support is needed the most, so no sourpuss faces on your mug. 

My experience shows most people fear those who are different as they fit into the others category. Individuals who walk with a wobble, use canes, forearm crutches, or even use wheelchairs get shunned and chagrined. However, those of us who ambulate using these methods are the ambassadors of the disabled, meaning we need to put our best foot forward.  We need to prove we should not be rejected and neglected but deserve the same respect as everyone else.

The second part is subjective yet more critical, in my opinion, which is to help people before they ask for any assistance.  To insert true happiness into the mess we call society, I say pay it forward by helping others even when they cannot help you back.  Asking is the hardest part of need, so if we can stand out to show we care for a stranger, it makes us better people. Be aware you do not have to do anything outside of your comfort zone.  The list of volunteering options is just as long as the non-volunteering items that are desired.   A kind word, an offer to do the dishes, a ride, a smile, and these seemingly simple stunts may seem silly but may mean the world to the recipient. 

When I was growing up, my family was lower middle class, although we were a hare’s breadth away from being poor. Unfortunately, our family held onto the title of the lower middle class like it was the last Twinkie at a Weight Watchers meeting.  My mother, a single parent, worked a full-time job and went to college, so we rode that tightrope between poor and poor-ish for seven years.

We were low-income, but I had no idea what being poor meant until I met some genuinely poor people in high school.  I was not afraid to make friends with anyone, including those shunned and socially shamed because of their appearance or clothing.  I made good friends with those who were the real impoverished individuals in high school.  Freshman through senior year was the most challenging years for a kid to hide the family’s financial footing.  So I had both rich and poor friends though I learned the most about life and the real meaning of friendships from those with the least.

I learned from seeing this downtrodden lifestyle and how some of my friends did not work so their parents could do so.  Most days, Jim needed to watch his younger siblings because his parents could ill-afford decent childcare.  I quickly realized that when we were going to eat fast food, Jim could not buy food for lunch.  I did not want them to feel bad and look needy if I only bought food for him.  The solution was to pay for the group as not to single out the most disadvantaged amongst us.  It felt good to do good for others without making Jim feel embarrassed or ashamed for not contributing financially. My action was done with no expectation of payback, thus I began a life of utilizing opportunities to pay it forward or daily acts of kindness.

My mom tells me I am merely leading by example, yet I genuinely hope people are willing to follow suit.  I understand not everyone can afford to do a lot, but little acts of kindness make a difference in this bitter-filled world.  So the next time you are out at your favorite coffee place, buy a coffee for a stranger or do some other random act of kindness.  I guarantee you it will make them feel good, but it will give you an incredible feeling as well.  On the other hand, if someone does something kind for you, be gracious and say thank you while consider paying it forward.

Be the change in the world that you want to see- Gandhi.

The hike that almost killed me…

I have decided to try telling some of my more difficult early multiple sclerosis stories. I was scared to shares these torturous tales as I do not want anyone to judge me for my feelings of fear or fright. Like a friend once told me, I was making “mountains out of molehills”, and I should “build a bridge and get over it.” However, this pain still lies deep in my psyche, and as I write about it nearly twenty years later, I still feel the anxiety and dread. This disturbing tale is going to take much time and tears to put down in writing.

It is my understanding that talking about issues such as these is imperative to one’s mental well-being. However, these troublesome tragedies are difficult to think about and are no more comfortable to put into words. I have to keep reminding myself that everyone deals differently, which is why some people come back from war mentally broken, and others have no visible or invisible scars. The following blog is my war story, and it has broken me mentally, leaving scars on my psyche that will haunt me forever.

In Columbus, Ohio, the metro parks hosted a weekly winter hike program every year, and my mom invited me to join her and my stepdad. Up to this point, I had virtually no MS symptoms, although this time, that would seriously change. On this day, I would meet the maleficent monster who would haunt my nightmares and negatively change my life forever. The hikes are held at various parks around Columbus, Ohio, starting on Saturday at 9 am. I showed up in the morning wearing my hiking boots, ready to take on the snow Mother Nature spread that night.

Most people had proper pad paraphernalia, although a few sadly did not understand the importance of suitable footwear. There are often several trail lengths to choose from, including a short one mile a three-mile, and sometimes five milers. This park offered one and three miles, and being we were all avid hikers, we chose the lengthier three-mile route.

The hike started on time, bright and early, even though it snowed significantly overnight. About a quarter of a mile in, I began to feel extremely exhausted and verified with the rear guide how far we had gone thus far. I told this rear volunteer I would be going back to the beginning and explained I was fine, but I felt a little unwell. Unfortunately, that was when I should have quickly clarified I have multiple sclerosis, and extreme cold can quickly and viciously rip all strength and energy from my being. Right then would have been the perfect time to define my monstrous MS malady, and it would be in my best interest to have someone walk back with me. However, I was a big bad bull-headed Marine who was embarrassed and ashamed to ask for help even at my detriment or peril.

As I walked back alone, the wind was bitterly cold and felt like sandpaper dragged across my face. I could feel my strength vanishing as every step became slower and was more difficult, just as my thinking became sluggish and lethargic. There was no one on the trail, and my weakness was quickly overpowering my tenacity and perseverance. I had less stability with every passing second, and I needed to lie down for just a minute to catch my feeble breath, then I would finish the hike back to the start. After I laid there for several minutes, I heard a voice call out, and I panicked. I jumped up and ran to a walkway underpass about ten yards away, and I stood against the wall as the group hiked by.

I have no clue why I ran, but it was likely because I was always an able-bodied, weightlifting, tough-as-nails Marine, and I did not want to appear weak. One of their group guides was left behind with me, so we walked back on this treacherous trail together. However, the walk was slow and desperately difficult, as my weakness and sluggish walking were back. I tried to hide my wobbly walk from this woman, but I was as easy to read as a Dr. Seuss book. As we walked back in silence, every slight uphill step felt like climbing Mount Everest, all the while the guide continually looked back and cautiously observed my every step. It felt like I was caught in an MC Escher drawing as the path just kept coming with no end in sight. This female guide did not understand nor question my arresting ambulation oddities, and I did not share. I was an Eagle Scout, US Marine, and a young guy in his twenties and felt incredibly ashamed of my insufficient capabilities.

When we made it back, I sat silently on a bench for twenty minutes or so before I began to feel physically fine. Once I was feeling up to par, I decided to join my family to hear about their adventures. My mom told me about their hike and then asked where I went, and I downplayed things by saying I found a bench and sat for a while. It turned out my hike was a half-mile of sojourn I will never forget.

I now understand my MS and the physical restrictions and challenges that limit my abilities in these situations. Unfortunately, sometimes I take things for granted, which can cause havoc and encourage me to devalue typical transfer movements. These thoughtless actions can force me to make mistakes that can threaten my well-being. However, I am always trying to think through everything I do, including sitting positions and transfers. So, yes, this day significantly impacted my nightmares, but it also created a staggering impression on my understanding of multiple sclerosis and my life to come.

Empathize not sympathize

Quickly conquer chaos…

Staying organized in life is an immensely important endeavor, no matter who you are. It is beneficial to keep all of your doodads and doohickeys diligently divided so you can reach them in an instant. The intelligent choice is to keep your selection of widgets and digits neatly stacked for your quick, convenient calculations. In addition, it is essential to keep your entire calendar of events prominently posted for your perfunctory perusal.

As a twenty-year veteran of multiple sclerosis, I like to stay exceptionally coordinated and formulated to help my life run smoothly. However, things have changed since before I began using technology to aid my memory and simplistic systematization. Before utilizing any automation application, I was old school, and the inside of my house showed it. Everything was coated in a thick yellow layer of post-it notes, reminding me of things like I was a retired senile scientist. These notes reminded me of the most mundane tasks because, at the time, depression made sitting on the couch my only priority. These inked notes reminded me of everything, including brushing my teeth, meal times, and when to check the mail, along with many other just as ridiculous reminders. My bills were all piled neatly in several separate stacks showing me what had been paid and what was still outstanding.

There is now so much technology to help you stay organized excuses have gone with the dodo bird. 3.48 million Applications exist in the Android Play Store, and 2.22 million apps reside in the Apple app store, reminding us there are many apps for that. These application operations can assist you in budgeting, household chore reminders, or even when to simply throw old apps out the window. Gone is the day of tying a string around your finger to remind you of a task you inevitably forget anyway. The process of writing a to-do list on a piece of paper you soon lose track of is a thing of the past.

Smartphones, Google Home, Amazon Alexa, Apple Home Pod, computers, tablets, and even smartwatches make staying unorganized a problematic task. We MSers and most people need to find what works best to keep our lives formulated and coordinated to avoid confusion and chaotic clutter. Multiple sclerosis causes plenty of mind messes like shoddy short-term memory. So we must be aware of our weaknesses and find assistive tools to help us be the best we can be. Do yourself a favor and find apps to help organize all areas of your life, from finances to scheduling and everything in-between, as the possibilities are endless.

With organization comes empowerment.

Bipedal position priority…

The following entry is my last blog in the series discussing my standing power wheelchair. Let me first explain when a person is in an accident and must live in a wheelchair, quite extensive training is shared. This information improvisation is given because a wheelchair is life-altering when added to someone’s existence. However, I was given a manual wheelchair but not even five minutes of life lessons which would have helped make my life exponentially better. Although getting into my standing device is a top priority, these facts mean it is not the only purpose for physical therapy.

We have all heard the horror stories of how slow the Veterans Administration can be with the red tape. However, this is my story of how things have moved rather quickly to get everything I require and desire. This speed is even though the pandemic is an ongoing obstacle and constantly sends stuff to slow success.  After making my land-stand demand, it did not take long to receive the upright stature manufacturer via special delivery.

When I received the massive mechanical monstrosity from the Veterans Administration, I was faced with a new challenge. My goal is to learn how to climb this contraption calamity unassisted and stand several times a week. The VA rep and I spoke pretty extensively on my options to transfer from manual to power chair safely and unaided. We talked about building a platform to make my manual chair at the same elevation as my power chair, later recognizing this was a bad idea. Also, we discussed using a power elevating bed, inevitably adding six extra transfers into and back out of the standing device. This process would be too exhausting before standing and another bad idea. I only wish a physical therapist was involved in the conversation because the therapist who eventually helped me said a direct transfer is the best and only real idea.  She shared how it would become second nature and easier in the long run while challenging initially.

The first thing I learned in my new manual wheelchair life is the plethora of unexpected muscles required. Every movement brings a need for a new set of power holders you did not know you had or even needed. Pre multiple sclerosis, my choice for exercise was weight lifting, yet I was still missing the correct strength for my sad seated situation. There are a mere 206 bones in the adult human body, but about 600 muscles, meaning many do not get used in daily life. These muscles can get pulled off the bench when life situations change, like a wheelchair, requiring new abnormal movements. It is also my understanding every position and action the body makes requires stabilizer muscles. These equilibrium enforcers encourage individual external balance allowing synergy in the body movements.   

I wanted to wrap this blog series up in a pretty little bow and simply say all is well. I was hoping to share I am standing in my massive machine several times a week, and it only took a month or so of training. Unfortunately, that is not how our wonderful world works, and sometimes you must put in your blood, sweat, and tears. Many times you must refuse no for an answer and bust your hump and make life happen. It is essential to understand life often requires hard work no matter what you want to accomplish. So let me close by saying I am pleading for perpetual progress leading to plummeting problems, and my daily life is safe and secure.

At times life demands significant effort so make yours count.

Read more about my MS adventures, visit http://www.mymsramblings.com    

This is me, Barenaked…

My regularly scheduled blog will not be airing today as I bring you this special report. Instead, my next blog post will release at its standard time in two weeks. 

Some people have questioned why I say I am not deteriorating, yet lately, I have shared my struggles. Let me explain why I say these things, although I can only speak about my experiences. First, there has been a significant difference for me between pre and post-pandemic exercising and blogging both. Second, I have gone through something like this before, and although I recover slowly, I still do return to my fitness level.

Before the pandemic, my life was full of activities keeping me busy and always moving.  For example, I swam three days a week for two to three hours each day, giving my body abilities I lose without exercise. If you read my blogs before the pandemic, I wrote about things like when I did my 5K in my wheelchair, something my endurance encouraged.  I also learned how to swim without using my legs or a flotation device, giving me another form of fantastic fitness. Three months after learning this new swim skill, I swam eight miles to raise money for a swim challenge the MSAA put on.  I also wrote about the various sports and extreme sports available for wheelchairs and the one sport that piqued my interest: kayaking. Lastly, I wrote about my MRI, which showed no new activity. I blogged about all of these things, exhibiting some great activities I accomplished, and my multiple sclerosis did not hold me back.

During this pandemic, I have not been able to exercise the same as I had before. And this is because the pool releases the bonds of gravity, making it exceptionally easy to reap positive impacts from total body exercise. Unfortunately, this information means my physical struggles have been a little bit more frequent. Although, I have been through a stoppage before and have recovered. Be that as it may, my doctor pointed out some of the most recent issues I blogged about are not MS-related, reminding me father time does not care about your problems and continually moves forward.

This blog refers to me and my choices in life and discusses the path I chose and why I zigged where others might have zagged. The preferences we make in life are not right or wrong but are just the decisions we make, and we have to live with any outcomes. I have never told anyone not to take any MS medications without doing basic research.  Either we make our own decision, or someone decides for us. Yet, no one should scare you into taking a drug that might not be right for you, do your research.

In the beginning, I let the doctor decide for me because he is known as a great doctor in Columbus, Ohio. Although we did not discuss options or even medications on the market, he merely said take this and gave me details on receiving the meds in a cold pack via UPS.  The first medication he prescribed I took for two years, yet sadly it seemed every appointment I had deteriorated a bit more.  His recommendation was always to wait and see, which led to the next visit and declined even further.  Finally, after two years of this bad body breakdown, he put me on a different medication in which the degradation continued.

After deteriorating for the third month, when starting the new medication, I began to do research. There were four MS medications available at the time, and I had failed on half of them. As a result, I no longer have faith in the Pharmaceuticals for MS and searched to find what others were doing to manage their MS. Since diet seemed to be a significant factor, I followed the doctor Swank diet, specifically for multiple sclerosis. 

I then found something called low-dose Naltrexone, aka LDN, which has been helpful for many MSers.  LDN was FDA-approved in the 1980s for drug and alcohol addiction in much larger quantities, that plus the thousands already taking it, let me know it is safe. There is an annual National LDN Conference where doctors from all over the world get together and discuss its benefits. I researched diligently for well over a month, and I even found a doctor to prescribe LDN. When I began taking this medication, others on LDN commonly said any symptom that began six months prior to starting the medicine could get better. Only some of my issues got better, yet when my mom saw me walking with a cane and not struggling with my walker, she cried like a baby. I have been taking LDN continually ever since that first prescription and plan to continue.

Do your research because who is a better advocate for you than you? Do not listen to only one person when doing your research and if anyone spouts statistics, say thank you and keep studying. It sounds like a lot of work, and it can be, but it is a beneficial burden when your health is concerned. Read as much as you can and learn why this medication is better than that one. Why is the chance of becoming ill less likely with one drug over another?  You have options, so learn them and do not let others make your choices for you.  I understand it can be overwhelming, so slow down, take a breath and find a friend or family member to help you get in a good headspace. Join an MS support group or two since they are living it, they can tell you the facts. I do not feel it is as bad as you think it is.

Also, go to any number of online MS support groups and find out who is not taking any medication and is doing well. I have known people to have used the DMTs and do well and others who take it and do not. I also know people who have not taken any of the medications and done well and others not so much. And for those who spout the statistics like they are the literal words of God, your statistics have failed me not once but twice with the MS medications I tried. This fact proves statistics are nice but not the end-all-be-all.  There is no right or wrong answer for everyone, so you have to decide what is best for you. Once again, who is a better advocate for you than you? It is your life and your health so determine if you want to make the decisions for yourself or do you want others to make the call for you? These words are just my humble opinion as a twenty-year MS veteran.

We are all trying to be the best of ourselves. So do not let someone tell you who to be.

Part one: The Fault in Our Cosmos…

There are many health benefits to the simple act of standing in an upright position.  However, the bipedal part of society does not need to concern themselves with this issue as they already reap any ambulation rewards. Strengthening bone density from bearing weight onto your lower limbs seems small but is a vital part of life. Skeletal deterioration was a quizzical concern NASA had to carefully contemplate to help astronauts when returning from space.  When visiting the cosmos, your bone density weakens one percent each month in zero gravity. NASA finally designed an exercise machine allowing an astronaut to exercise and feel gravity like on earth.

Standing also helps with spasticity in the muscles caused by pitiful positioning, circulatory slowing, and poor posture.  The bipedal propulsion position also encourages proper blood flow, which is difficult while seated, causing more problems.  When an ambulatory individual is sitting at the office, many of these issues plague them as well.  These concerns and the fact many people are heedful of healthy habits inspired the resurrection of the standing desk.  These physical challenges make the simple act of walking on two legs an essential part of life.

For several years at my old house, I would stand using a grab bar and sink in the bathroom to do five squats, and calf raises hourly.  When I moved, the size and shape of my new house made this procedure more difficult to continue because of the travel time and inconvenience. In addition, the stopping of my mild exercise program encouraged my leg muscles to deteriorate, making many tasks a struggle.  Wanting to reverse my lower limb loss, I decided to go to the VA for physical therapy with the sole purpose of learning to stand at home with limited assistance.

While at the VA physical therapy, I was able to stand with minor assistance and use the parallel bars. I thought standing repetitiously at the bars would reward me with positive results, yet sadly, it is not in the cards for me to stand unassisted.  The physical therapist and I talked, and the conversation evolved into power-standing wheelchairs and the benefits I could expect from having one. I clarified my intention of not going to a power chair until it was a physical requirement I could not ignore. I want to use my arms until I lose my arms, I proclaimed fervently. The therapist saw I was steadfast in my ideals and quickly clarified it was not an either-or issue.  She explained many of her clients have both types of chairs. They use each depending on the day and how they feel. However, they stand a lot at home using the standing chair because more benefits are received as more standing is achieved. 

The next thing we did was schedule a power chair representative and a veteran rep to visit my home.  The delivering duo came to my house and brought out one of these mechanized monstrosities to show its capabilities. Most power chairs have limited skills, only moving anywhere on a single plane like forward and backward.  Because of its limited abilities, the motor is small and sits directly under the driver of this chair.  This action means the footprint of these armchair accommodations is relatively small for such a big seat. However, a standing power wheelchair must counterbalance a standing human and has a larger footprint.  The sales rep sat in the chair and began moving levers and wrapping straps, showing me how it worked.  They then asked me how best to position the chair to transfer into this colossal contraption safely.

When I pulled alongside this massive machinery, two things stood out and made me realize a transfer would not occur.  The first thing that stood out to me like a burnt potato chip was the six-inch gap between the two chairs.  Next was the four-inch height difference on the other side of the six-inch gap.  Like Evil Knievel jumping over Snake River with his jet-powered motorcycle, this too would be a failure if I tried.

I started this blog entry four months after the beginning of the pandemic. It is part one in a series talking about attaining and maintaining my power-standing wheelchair. I had to wait for the VA to figure out my options for getting into the chair by myself. The possibilities for me, self-mounting this motorized mechanism were plentiful but none yet successful. The task is essential, making options extensive. Stay tuned for the next episode, where I discussed the battle to plop my posterior to the proper position to transition this Titan Into a training tower to teach my leg bones to build more density.

Machines will save our lives, not dehumanize.

Horribly hidden hits…

One of the most significant issues with multiple sclerosis is the many hidden symptoms leading to accusatory statements.  The invisibility of these MS issues means others do not see, perceive, or believe they even exist.  Two of the primarily posed comments are you do not look sick; you must be okay, or even, I know someone with MS, and they do not complain like you.  These statements drive MSers insane and can cause us to stand our ground vociferously in defense. All people with multiple sclerosis are different, so if you know one person with MS, you only know one example of this inexplicable, unpredictable medical condition.

I have been a member of several local MS support groups and currently in various MS Facebook groups. In the following blog, I will do my best to explain the experiences of those dealing with these conundra-causing covert complications. I am in a wheelchair, so rarely does anyone question the unseen symptoms impacting my life. First, I must help defend my MS brothers and sisters by spreading my words to the ill-informed masses.  I hope using my words can do justice for all of us warriors struck with multiple sclerosis.    

In the multiple sclerosis family, we deal with an excess of dilemmas and even daunting doubt from others. On a good MS day, it is merely a beastly condition continually taking from every aspect of our daily lives.  Our courage gets questioned while our pride is persecuted as we struggle through our every movement.  We endeavor setbacks every time we attempt to take one step forward, not backing down from the fight for our very existence.  Most people will never know or understand the debilitating issues we warriors go through to simply get out of bed in the morning. Yet with every strike against us, we persevere like a baseball star hitting out of the park every psycho spitball thrown by the diabolical devil himself.

We no longer have the luxury of taking any part of our lives for granted and must consciously consider every minor task.  Simply drinking a glass of water, for many MSers, requires extra steps that could choke and kill us if not followed.  Like a pitcher watching the catcher’s hand signals, we must follow the extensive steps for every essential task.  We have a deep-seated fear of dinner out with friends or family as we wonder will tonight be the night ending in an ambulance trip.  These constant concerns continually capture our consciousness because the risks can be dire if not followed.  It is no wonder why melancholy and depression fill the manipulative and maleficent world of MS.

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

There is a symptom with a perfectly pleasant name but has devastatingly diabolical impacts on the MSers body.  MS Hug is the name of this symptom, and physical terror is its game. The explanation to me was a python that wrapped itself around you and squeezes. The squeeze is hard enough, so every lifesaving breath is excruciatingly exhausting. These breathing complications are not only challenging, but they can last for weeks and, from my understanding, even years in some cases.  It was detailed from someone else as five bands wrapped around the torso tightened like a vice grip allowing only slight pain-filled breathing. 

Pain is a common theme across these invisible indicators, severely impacting my multiple sclerosis family. The pain some MS patients go through is so torturous they need a properly positioned pain patch.  They might even require some other form of continual pain soothing medication to dull the suffering though barely.  In life, most people know the mundane pain of a headache, stubbing your toe, or maybe even a broken arm.  However, the pain of those with multiple sclerosis continues forever, yet we have learned to smile through it like the warriors we are.

Most people have been tired from a long day at work or f from a vigorous workout. However, from an MSers perspective, we sometimes get dreadfully debilitated and need a respite from merely taking a shower. Needing a major rest after a minor task is as common as the sun rising in the east.  Fatigue impacts parts of our lives we do not always expect, like it can make us ridiculously weak. For example, I have been so tired my speech gets significantly slurred and hard to comprehend. This complication causes a need to close my eyes and rest for at least ten minutes as soon as it is physically advantageous. If I do not find relief, my disabilities can get excessively worse, requiring a more extended respite.  

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

They cannot stop us, superhero warriors.

I understate, not exaggerate…

Disclaimer alert: I have visited the darkness, stood on the ledge, and peered over, questioning everything deciding if I wanted to continue on this road called life. After coming back from looking into the eyes of the Ender, I chose never to question things the same again. I say that to say this, my struggles may be daily and seemingly endless, yet my attitude reminds me every moment’s misery is a choice.  In this blog, I discuss these situations light-heartedly yet do not mistake my jovial attitude as total ignorance towards the challenges of my life. I am not saying my life is more complicated or even more straightforward than anyone else, we all have difficulties, but they are all different. Lastly, do not look at a person with MS or any medical condition on a TV show or movie and think it is accurate because it is not.

People periodically pose a perplexing query to me. Occasionally others say I probably exaggerate my blogs to be more impactful and wonder what MS is genuinely like. These periodic prods from people primarily push me to clarify the facts of how MS affects me. My life as an MSer is complicated to describe because you will not understand it unless you have lived it. Even others who use wheelchairs may not understand one hundred percent because our chariots are all built differently since our needs vary drastically. So let me share one seemingly simple stint of life for most taking only a few minutes while it becomes a laborious job for me.  On an average day, it will swiftly switch into a daunting daily duty that can take me nearly one hour. 

I wake up and do not hit the snooze button because my mom taught me when I was young, sleeping in is burning daylight, so I get up. I wake up on the left side of my bed, and to get out of bed, it is a wrestling match of Epic Proportion. Sadly, before I even move, my legs go into a stiff spasm tighter than the core of a baseball. I know how to massage it out to make it stop hurting, but the spasm simply stiffens my entire body, so I cannot bend it and must painfully wait it out.

My next challenge is to rotate myself counterclockwise ninety degrees, so my feet dangle over the edge of the bed. Any movement is made more arduous by my leg muscles that constantly play a movement game. Roulette is the game name, and torturing Scott is how it reins the same lame game. As I twist and turn, I grab the bed sheets and pull towards the foot of my bed, and continue the leg wrestling with myself. While I try to scuffle and shuffle on my bed ruffle, my leg muscles take turns tightening in opposing directions causing various problems against my every movement. 

When my quadriceps muscles take their turn, they shoot my legs straight out and stiffen them like I am in a planking competition. I never make any movement quickly, and now it is my hamstring muscles that tighten as I sit up on the edge of the bed. While this muscle tightening pulled my leg in instead of out, causing its own set of problems. This game between my leg muscles pushing out and pulling in means I only have a few seconds before I can expect the next shift. I quickly get proper pad placement and positioning and prepare for my posterior propulsion. I massage my thigh muscles to keep them from spasming for a few minutes as I prepare for my lift and shift. After several additional minutes, I can do a derriere drop directly onto my wheelchair seat.

All of this maneuvering so far has only taken thirty minutes and has moved pretty smoothly, all things considered. So let me stop for the interactive part of the show. Imagine you went out to dinner with some friends and you had some food that did not agree with you. When you get up to rush to the bathroom, the previous scene is keeping you from quickly getting to where you need to go. Could you make it to the toilet, or do you have to make a sixty-minute clean-up part of your morning? Some of us do not have the luxury of deciding and is chosen for us. And it is never the easier path.

Next Interactive part. Preparing for bed, you must take off your day clothes and put on your PJs. First, sit on a high-back chair and try to remove your clothes without standing or getting any assistance from your legs. Then after you remove them, put on your PJs while continuing to sit without the aid of your legs. For some wheelchair users, this is an easy task, yet for some of us, it is not.

It is difficult when you are in a wheelchair to clean up a big mess. Let me clarify when you are in a wheelchair and you live alone, every mess is a big mess. For example, the other day, I tried to scramble a couple of eggs and microwaved them when I dropped the mug and raw eggs onto the floor. It took me just over half an hour to clean up as much as I could. I then had to have a friend come over and clean the rest of the eggs. My friends and family are few and far between, but they can attest that I do not discuss this kind of stuff with them. I only talk about things if I can make a joke out of it and make light of any situation. I never want to be seen as the constant complainer or playing the woe-is-me card or even looking for pity, making people want to avoid me. Life is ever-changing, and life with a medical condition endlessly evolves like the numbers on the stock market.

Disappointments are inevitable, but misery is optional.