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. 

Horrified, mortified, and terrified…

Before the current pandemic, I was swimming regularly three days per week at a local community center pool. My time in the water varied depending on whether I was taking a class, simply swimming, or both and would last two to three hours each day.  The pool truly worked magic on my body, maximizing my muscle mass and movability.  It was also beneficial to quiet the many mental monsters voicing various ventures which would not benefit my soul. 

Each year, the pool closes for two weeks so the staff could clean completely crown to the ground.  I exercise at home during this shutdown, but it was not the same.  No matter what I did, I could feel myself slowly deteriorate, so I eagerly waited for the pool to reopen. Unfortunately, this discouraging degradation happened even in this small time frame no matter how much I exercise, proving my MS cares not about time.  After the two weeks of astringent atrophy, it would easily take several additional weeks to build back my body when returning to the pool.

It is essential to know that everyone with MS is different. For example, you can put ten people with multiple sclerosis muscle spasms in a room, and every one of them would likely have spasticity to a different degree and in a variety of body parts. So when I am making a statement about MS, it is my experience and not everyone with multiple sclerosis. I never want anything I say to sound like an all-encompassing blanket statement, as that is never what I mean.

Sadly this pandemic has not been kind to me.  I would have gladly accepted indifference or total disregard towards me, yet that was not the case.  I minimally exercised in the first few months as I thought we would return to normal very soon. I then became more serious about my fitness, although there is no one to keep you accountable when you are alone.

 Someone asked me about a month ago how long I would be capable of living in this house by myself.  That innocent-sounding question has kept me up many nights and instilled total trepidation, and fear like no horror movie ever has.  The thought terrorizes me because I have always been able to do so much by myself, and now I will need an assistant for my pool time if that is the correct title.

I am simply scared out of my mind at the prospect of not being able to live independently. Yet, this query poses a new quandary: what is the alternative to this newly-developed dilemma?  I do not want to think about it, but I cannot ignore it anymore. This monster of mythical proportion called MS has relentlessly and brutally beaten me like a bookie collecting a debt.  Since this maleficent monstrosity is invisible, I cannot defend myself, meaning I must merely take the abuse.  Every time I think things have stabilized, something else occurs and proves my thoughts are wrong.  As of late, I have realized I cannot go to the pool by myself for a while, nor can I go for two or three hours each day like i used to.

So here I sit, deeply drenched in dark dread that rocks me to my core, and I do not know what the near future holds for me. I do not know what to do. I know I have to hire someone but who? I do not want to hire somebody for thirty to fifty bucks an hour which seems to be the going price but extremely expensive for my budget. So, of course, then my question becomes where do I find these professionals or more importantly the non-professionals to find someone to hire?  I would honestly shed a tear or two, but I cried so much in my early MS days that a dehydrated ant could sweat more water than my tear ducts can create.

I AM MORE SCARED THAN EVER. I AM AT A LOSS.

Dr. Jekyll and MS hide…

Inside each of us, two Natures, the good and the evil, are in constant combat on a quest for control.  All our lives, the fight rages on between them, and one of them must prevail.  But in our hands lies the power to choose what we want most to be and what we choose is what we are. I have even heard the query like this: are we good people with bad intentions, or are we bad people with good intentions?

I live peacefully in a wheelchair-modified home that I continually add automation where ever needed. These technological adaptations I use to help keep me living comfortably and independently. My goal is to be as self-sufficient as possible, so I continuously seek out innovative technology that rides the line between affordability and usability. In other words, I do not want any mechanization simply to show off to friends and be the “big man on campus.”

However, an uncontrollable demon has moved in without my permission and will not depart per my demand.  No eviction notice will work, and the authorities cannot help as this beast can hide in plain sight. It has taken root deep within and takes control without consideration of the host body, me. This vile creature takes control of my lower limbs, lengthening the time it takes me to do anything.  My permission was not requested, nor was it given, and the abuse I receive is brutal and does not let up.

I take CBD oil before bed which helps eliminate about 60% of my muscle spasms while I sleep. And yet, at times, my legs still flutter like the wings of a hummingbird after a triple-shot espresso.  So when my alarm goes off in the morning, I am tired after a night full of lower limb leaping, twitching, and general jerking.  As I attempt to get out of bed, my legs quickly stiffen, requiring me to wait to get out from under the blanket. My lower limbs finally release, and I begin to scoot around, so my legs hang off the side of the bed.  I pull myself up so I am sitting correctly, and as I reposition to straighten up, my legs quickly stiffen, harshly thrusting me back flat on the bed.  After a couple of minutes, they begin to relax again, and I can readjust and sit up correctly and lock the wheelchair breaks.

I pull the chair forward and closer to me and then place my left hand on the bed and my right hand on the chair. At that point, I launch my rump like a ramp until my butt seat meets the chair seat, and when my rear lands, I fear and grab the wheels with my hands.  I am nervous because, once again, my legs spasm and shoot out like I am modeling for a soccer trophy, and if I am not careful, I will slide off the chair onto the floor.  An error like that can bring an entirely new set of problems that will ruin my otherwise typical challenging MS day.

Once I am finally square in the chair, my new task is to put my shoes on. As I attempt to put one leg up on the other, I hear the maniacal merriment from this mischievous monster. Next, I attempt to pull my leg up, and just at that point, the leg stiffens and clunks onto the footrest. I slowly count to twenty allowing my muscles to relax, and I attempt this minor maneuver again. Repeatedly this Beast uses my muscles to fight every move I make. Finally successful with the right leg, I switch dance partners and begin this wrestling match with my left leg. This part of my morning combat campaign takes an additional nearly ten minutes.

If you are a person who is not living with multiple sclerosis or some other medical condition, then this writing may not make sense to you.  It may sound like I am merely exaggerating or even complaining about a slightly slow start to my day.  The truth is my experience getting up completely and out of bed and into my wheelchair on a good day takes twenty minutes, not even putting on clothes at this point. However, this terribly torturous transfer can easily take upwards of an hour from bed to wheelchair on a bad day. Do not forget I make this type of transfer nearly ten times a day, and on an extremely bad day, that is pretty much all I can do. There is no time for anything else, making some days simply superfluous quickly burning up most of my day.

You may know someone with a medical condition of some type, and even when they tell you how they are doing, do not think you know.  Truthfully most people with disabilities tend to sugarcoat the facts because they know you do not need nor could you handle all the Gory details of their actual lives. They do not want sympathy and only want to be treated like everyone else. I briefly talked with someone about one of my issues, and they said to simply do this. I thanked him for trying to solve my problem, sadly, for some Physics bending reason; my multiple sclerosis body does not work that way.  So instead of trying to problem solve what we need most is for you to sit and talk with empathy.

This diabolical demon often tells me resistance is futile.  

He hates me, he hates me not…

Many of us with MS have shared how we frequently feel like a burden to our friends and family.  No matter how often we hear it is not the case, it does not negate our feelings of onus concern.  We think this way for a variety of reasons, from the significant to the simplistic.  It could be the plethora of friends many of us have lost because our MS causes these lost souls inconvenience and hassle they would not accept.  They do not want to deal with the daunting daily difficulties that can pop up without fair warning causing life to significantly slow if not simply stop.  Yes, our loved ones often tell us our challenging lives are not a problem yet like a burden we still feel because it can weigh heavily.

Sadly as of late, there have been some troublesome challenges that have resulted in me being more of a burden than usual.  Again, others tell me I am not a burden, yet that is the only word that makes sense when you call people at their job to help you get up off the floor.  Recently I have had The Perfect Storm of faulty physical follies that I must blame primarily on myself.  In some of the blogs I have written since this pandemic began, I have advised of the potential pitfalls being homebound could lead to.  Yet, part of my failure was I did not heed these alerts I placed in my well-written and detailed blogs intended to help others avoid them.  No matter how terrible, this false step is not to blame for one hundred percent of my year-long downfall and, more specifically, in the last few months.

Before the pandemic, I was swimming three days a week, two to three hours each day.  I was very fit and did not fall at home because my muscles were in good shape.  At that point, the pandemic forced many of us to be on lockdown, and regretfully I did not exercise as much as I should have.  After several months I could feel my body deteriorating in various ways, so I began searching YouTube for exercise videos.  I got more serious about my fitness when I found a Youtube channel specifically for wheelchair users. 

Then about ten months into the pandemic, the Veterans Administration got me a power standing wheelchair for the many health benefits of standing.  I knew transferring into it safely without guidance would likely cause catastrophic conditions. So the VA set me up with a physical and an occupational therapist to help me learn to keep my independence with this chair.  Working with both therapists two times per week has been enormously benefiting yet debilitating as exhaustion has become my copilot.

In several of my blogs, I advised others of the perils of not eating cautiously during this pathetic pandemic.  I tried to remind others how easy it is to gain weight from eating excessively and moving minimally.  Unfortunately, I did not take the advice I shared so freely, and I began the mastication nation world tour.  I started ordering meals from various local fast-casual eateries thinking it would be healthier than fast food.  My intentions at the start were good as I kept my portion sizes small by splitting each meal, making two meals from one.  However, the longer this lockdown kept me confined, the more I ate, and my posterior and paunch plumped and protruded past my wheelchair seat. Because of this backslide of my backside it returned to a larger size, I am returning to a food-limiting lifestyle.

Another negative issue for my MS and home life has been the unpredictable temperatures outside.  I can handle warmer and even colder temperatures as long as it keeps a constant temperature.  This fact means spring and fall are the most physically challenging for me when the numbers on the thermometer outside bounce like a caffeinated Chihuahua.  It is difficult when I have the AC on in the afternoon, yet I have to turn the heat on to remove the cold from the house in the morning.  It causes my limbs to act like a petulant two-year-old and forces my appendages into a spastic temper tantrum.  All of this means in the last few weeks, my difficulties have disappointingly doubled, leading to more calls for help, and I feel bad for it.

Our bodies began a tug of war while they learned to listen to us when we were babies.  As we moved into puberty, our bodies threw constant temper tantrums for several years as the growth made communication with our bodies difficult.  Soon after they got with the program, a synergy formed between our bodies and brains, and our movements became smooth and fluid.  However, with multiple sclerosis in my body, the communication between my brain and body parts is back to the petulant child days.  I realize people have no true understanding of what MS is because in every person with MS, it is different, and if you do not experience it, you cannot understand it. 

The best way to explain my MS so people can get even a slight inkling of understanding is like this: MS makes my body not listen to me while creating chaos and constant confusion. On a good day, my MS is like playing a first-person video game with a sixty-second-time delay.   So when you manipulate the controller, the onscreen action does not happen for a full minute.   However, on a bad day, that action message I send to my limbs feels like it is going to Mars, seemingly taking twenty-two minutes to reach the recipient. No matter the case, my legs do not cooperate, making the requested action not happen, possibly causing terrible tumbles. 

My eyes do not see correctly, meaning the object could be simply blurry or like I am looking through the wrong end of binoculars.  This situation means it can take time for the signal to get to my brain to understand what I am looking at.

These physical troubles and challenges make my daily abilities shrink extremely and work sluggishly. Once again, they make the idea of urgency or spontaneity impossible as they zap my energy making my movements sporadic and uncontrollable at best.

This low strength of mine requires me to question every task in order to use my limited muscles wisely.  Whether it be significant or straightforward, I have to examine every job, deciding where do I put my energy as I cannot do them all most days.  There are many days where I have no strength to get dressed entirely, and some I only move slightly.  These assaults rage daily while some days the skirmishes are nasty, and others are nearly unbearable battles.  I believe multiple sclerosis could take down an average human, but we MSers fight like the battle-tested worriers we are.

I need to think slowly and move carefully to fall rarely.

MS: The certainty of uncertainty…

As a twenty-year veteran MSer, sometimes I am asked to advise the newly diagnosed.  Occasionally, I get to welcome the newly medically afflicted into the MS club. This fraternity is where the members are completely courageous, and the condition is continually confusing.  Questions get posed to me all the time, typically asking the same queries in different forms.  Is MS a death sentence?  No. You have MS, so how do you look so good? Oil of Olay.  What now?  Live your life to the fullest, finding ways around obstacles appearing in your path no matter what they may be. 

Then one gentleman’s query put me in a quandary when he asked me what he should expect from an MS life?  I thought for a moment and came up with this simple answer, keeping in mind this is my way of looking at it.  My explanation had cleared up our strange medical condition in this simple sentence.  With Multiple Sclerosis, you must expect anything and be ready for everything. 

However, there are a plethora of variables that make planning for MS an unyielding undertaking.  To give you an idea of some of these differences: age, how healthy you are, and your geographic location, to name a few.  Multiple Sclerosis neophytes need to know there are many similarities yet even more differences between symptoms and MSers.  If you ask any ten people with MS, you will see some commonalities and even dissimilarities in the symptoms.  However, the impact of these symptoms on their lives can vary drastically. 

People will usually share their stories about how they dealt with MS adversities they faced.  The problem is you will not understand until you experience those challenges yourself.  Although the same symptoms in different bodies cause various issues, no two MSers experience the same.  Keep your bodies moving by moving anything you can as much as you can for as long as you can and never give up.  No matter if it is running, walking, swimming, or something in between, stay in motion. I always say if you sit still for too long, your body will rust, and a rusty pair of scissors does not work correctly, and neither will you.  I went for nearly ten years without moving, and I deteriorated so much I am currently in a wheelchair. So learn from the mistakes of others.

Food is life, but the wrong food can be your downfall.  There are plenty of MS-focused diets from which to choose, and they all generally tell you to eat reasonably and smartly.  It is more important to pay attention to the similarities between these eating lifestyles and not the differences.  Portion control is imperative, just like not overdoing unhealthy food, do not overeat, or speed eat.  Although many argue what they look like, health and wellness are both critical.

When something unexpected happens, do not panic!   Someone has gone through it before you, and others will deal with it after you as well.  Remember, life with Multiple Sclerosis is your new routine, so adapt and overcome and never give up doing things.  It is essential to find a workaround that helps you do something you love or other tasks you want to accomplish.  When needed, wear a cooling vest or carry a notepad for reminders but do not deprive you of life.  It is important to take it one day at a time and be patient because MS surprises can happen at any moment. 

No matter what happens, keep a positive attitude, and always wear a smile.  When you require help, people will be willing to assist you if you are wearing a smile.  Grumpy Gus’s get a bitter rejection when assistance is needed most.  Learn your limitations but never give up and live your life to the fullest, using any adaptations required.  Be willing to laugh at yourself as it will make the difficult times easier to handle.  They say, if you are not laughing, you are crying, and who wants to cry?  Most significantly: do not ruin a good day today thinking about a bad day yesterday so let it go.

Build a stable support system filled with family and friends who are supportive, not pejorative.  Find a Multiple Sclerosis support group, whether local or online and find an MS buddy in that group.  Stress and MS are mortal enemies, so do not let them use your body as a battlefield because that war will not go well for you.  Avoid stress but if you cannot avoid it, find ways to manage your stress with meditation, music, or maybe religion.

I feel these are essential bits of knowledge for those who are new to MS.  Experience removes fear and builds your MS confidence.  So remember today you are better than yesterday but not as good as you will be tomorrow.

To thrive in this MS life, you need three bones: a wishbone, a backbone, and a funny bone.

Do I belong here???

Just when I think I am not going to have anything to blog about, something new occurs.  A bright light has been shined upon someone’s ignorance, imbecility, and inanity.  This terrible behavior makes my faith in humanity sadly slip southward and question humankind.  This belief backslide was caused by the indifferent, insensitive attitude of one individual.  Thankfully, as I have gotten older, I learned how to avoid confrontation with a person like that.  

There are three rooms for changing aside from the two locker rooms at the fitness center where I swim. These changing rooms are available for families or the disabled to use for pool preparation privacy.  In all actuality, anyone can use these rooms as there is no bouncer at the door to keep out the riff-raff.  Medical or not, various reasons create a need for private spaces such as these for the public in general.  All gyms should, and most do, have these private rooms.

I sat patiently waiting for the room I needed while I ate a protein bar and talked with a friend.  A woman and her daughter came out of the dressing room, and they slowly gathered their belongings.  She looked at the two empty rooms and then asked me if this was the only room I could use?

This woman had a terse tone to her query as she nodded towards the room they just left.  I said yes and then nicely explained how the other two rooms do not work for my physical needs.  She had an inflection that almost sounded accusatory like she owned the place and set the rules.  It felt like she was shaming me like I was not supposed to be in this public space and should stay at home out of sight. 

The confrontation flummoxed me, and I was speechless at her bitter interrogation.  Thankfully, my friend I was talking with spoke up as he could see the look of consternation on my face.  He explained the men’s locker room is not set up correctly for the needs of the disabled.  They went round and round as he tried to be clear, concise, and kind in his explanation.  This woman said everything she wanted and completed the information clarification conversation. With her feathers ruffled and unhappy, she swiftly departed.

I often want to ask all the antagonists in my life one straightforward and simple question.  How does MY situation that you know nothing about impact YOUR life?

Side note: Let us forget about the disabled for a minute and focus specifically on the family changing room’s original purpose.  The initial reasoning was to help parents who had children of the opposite sex in the locker rooms.  These rooms were highly beneficial to moms with sons or dads with daughters.  That means that since she had only her granddaughter, then by her logic, she should have been using the women’s locker room. However, did I point this out to her?  No, because my life is not impacted by her being there. Also, I am a nice guy, and it is none of my business.

There was one time when another woman saw me in the passenger seat in an accessible parking space.  My friends’ handicapped placard was sitting on the driver’s side dash as he ran inside.  She spoke into the open car window and complained that the placard was not hanging correctly on the mirror.   I tried to explain there are two options hanging on the mirror OR the driver-side dash.  She just harrumphed and walked away, not accepting or acknowledging she was wrong.

I understand she did not honestly know the law and should have said nothing.  Sadly people like her often feel entitled to say something even though they do not know the facts.  I again pose my query: How does MY situation impact YOUR life? 

I believe some people in America feel entitled to speak up when they should not.  They seem to want to involve themselves in matters that do not concern them and do not understand.  Those who want to be sensitive and helpful to those who are treated poorly challenged say or do something.  Stand up for a stranger who is being disrespected, degraded, or devalued because no one deserves that treatment.  However, say nothing if you know nothing.

Wise men speak because they have something to say, while fools speak because they have to say something.

Dying a slow death…

When I was younger, I made fun of the elders who made statements of how life used to be.  They might say something to the effect of “when I was your age” or “back in my day” or even “when I was a kid.”  Now I am more mature and find myself making those same comments quite frequently.  So if you are an older person, you can laugh at this essay, and if you are a younger individual, you can roll your eyes just as I did back in my day.

I was taught as a young boy the importance and value of a good handshake.  A handshake holds significance because it is a person’s word, they said.  My instructors told me to have a firm but not crushing grasp while making direct eye contact and smiling appropriately.  These mentors reminded me how a pleasant expression and smile comes across and translates into integrity.  The unwritten consensus told me a proper handshake is at least one up and down movement of the clasped hands.  Sadly, an individual’s handshake does not have the same meaning of trust and honesty it once had.

As I have become older, I have seen the handshake significance seriously slip in society.  I am disappointingly aware its importance has been lost, and the meaning has been debased and devalued.  In most cases, a simple fist bump or even a basic head nod has disturbingly replaced the handshake.  NOTE: I understand the necessity of the fist bump during cold and flu season.  I am not a insensitive.

When I meet someone the first time, I reach out with an outstretched hand to signify the proper etiquette of a bygone era.  Individuals who do not know me many times have given me the fingertip handshake.  This practice annoyed me a little in the beginning because of my feelings towards proper protocol procedures.  I soon realized people who do not know me fear the unknown and think I might share my illness like passing poison ivy.  These individuals do not know what they do not know, and it feels like they fear a handshake with my wheeled brethren and me.

A friend recently introduced me to someone, and I felt it did not go as a first handshake should go.  She took my outstretched hand quickly did a half shake in the downward motion, eagerly wanting to let it go.  It felt as if it turned into a cross between a half handshake and a let go, man, I do not want to catch your cooties!  Did she honestly feel that way?  Probably not, and now you know why I said it felt like it.

Your word is your bond, and the handshake seals the deal, I was told so many years ago.  Now it seems your word and handshake no longer have trust, honesty, and faith to stand behind them.  The phrase my handshake is my bond is now the punchline of a joke bringing comedy, not conviction.  I do not feel this loss is limited to wheelchair users as this etiquette of yesteryear dies a slow death.  

RIP: Handshake. You stood strong for so long.

CHALLENGE ACCEPTED, CHALLENGE CONQUERED…

My buddy came over with a pizza so we could have a conversation and mastication.  We talked about many things, including how my wheelchair life had begun a few weeks prior.  I was dreadfully discouraged and disheartened at my new station in life, so this was the focus of our in-depth discussion.  I allowed my intense imagination to run wild on how my existence in a wheelchair would look. The fantastic imagery in my head showed me a purgatory full of roads made of gravel and sand I could not traverse to get to friends and family. 

3.6 million people in the world over the age of 15 use wheelchairs to assist in their mobility.  However, the idea of being stuck in this seated contraption permanently unsettled me to the core.  It made me more nervous than boot camp for the Marine Corps when I was eighteen years old.  I lived alone in a house built in the early 1950s, and it was not even close to wheelchair friendly.  I did not have the mandatory moving money or even to make my residence more livable. I could see my new wheelchair life would be a constant uphill battle deeply drenched with my blood, sweat, and tears.

I still did not even have a way to get in and out of my house using this new wheeled mechanism.  My friend happened to know the right person at his church to ask for help with this radically ramping riddle.  There were some minor back and forth conversations, trying to figure out exactly what I needed for my house requirements.  More importantly, we had to wait for winter to end before they could begin construction on my new elevation inclination.  Building this big beautiful bridge took four gentlemen an entire weekend to construct.

My friend, who had been in the Air Force, realized the best thing he could do for me was to challenge me.  He told me if I did a 5k race in my chair, he would walk with me, and together we would conquer this beast.  The new goal of mine was searching for a 5k race in Columbus that would fit my needs.   This monster had to have a few things like a first aid lodge, bathrooms, and a place at the halfway point to stop and eat lunch.  Apparently, for a 3.1-mile race, they do not include any of those amenities. I settled for a first-aid table and banana at the end of the race.

Once my new elevated entry was complete, it was time to start training for this complex competition.  I knew that I needed a way to track my distance without using a paper map and a ruler.  Then I learned the true meaning behind an app for that as I found a plethora of distance tracking apps.  Once the user presses the start button on their smartphone, several things happen. The phone uses GPS and tracks to within twenty-five feet of its fixed location. I found an app I liked, downloaded, and set up an account to tally my trip totals.

On the first distance trip, I planned to conquer the world or to traverse a few miles.  Sadly it did not take me long to realize I did not yet have the muscles a race like this demanded.  On day one, I completed an excruciatingly exhausting 0.2 miles, and I needed a significant rest that night and the next day.  My arms felt like I ran a mile while doing a handstand meaning my arms felt like jelly the rest of the day.  I now understood this training would take more time than I thought, and there were now only four months until race day.

Every other day I wheeled around my neighborhood and watched my distance grow regularly.  For the first month, I needed the next day for total respite as every trip seriously challenged me as it was exhausting.  While I trekked around the community, I celebrated every milestone that I achieved.  As I got stronger, my circuitous route took me around a school several times and throughout my neighborhood.  During the second month of determined pushing, my trips became long daily muscle building excursions.  I also rested and recovered rapidly every night.  I watched as nearly every day and more quickly than I expected, my daily distance crept higher and higher.

The night before the 5k, my friend brought pizza to palaver and discussed the morning procedures.  He reminded me to get plenty of sleep and eat something in the morning, not too heavy.  We talked about when he would pick me up and what I would wear for this 3.1-mile marathon. I was quite nervous about the 5k, so my buddy reminded me there was no doubt in his mind I did the training and was ready for it.

Four months after starting this dynamic distance drill was game day, meaning it was time to put up or shut up.  Now was when I needed to put my big boy pants on and show the world, or at least those that showed up, what I could do.  My nerves were shaking more than a guitar string playing heavy metal music, which made me wonder if it was too late to back out?

I spoke with the correct person and requested to start the race early.  I was in a wheelchair and moved slower than a herd of turtles stampeding through peanut butter, so I wanted to get an early launch.  I was hoping for an hour head start but was allowed to leave just after the kids and ten minutes before the runners.  Those ten minutes lasted fifteen minutes as the runners caught up and passed me so very quickly.

The race was excessively, excruciatingly, exhaustingly long at 5 kilometers or 3.107 miles, to be exact.  Of all of the wheelchair users that day, I was first to cross the finish line and got my picture in the newspaper.  After exactly four months and one day of training and starting with 0.2 miles, I completed 4.11 miles that day.

When told you cannot do something, do it and prove you can.

The illusion of ADA disillusion…

Just as every human is different, the same holds for the people with disabilities in the world.  You can call me differently-abled, a disabled person, or a person with a disability; just do not call me late for dinner.  However, we are all like snowflakes meaning no two people with disabilities are the same.  This fact means if you plan to invite us to join you, it is best to make preparations and include us in the planning as we know our requirements.  Every person with a disability struggles differently, creating a brutal battle to make inclusive plans for everyone.

I called to make an appointment at a law office and learned that I must ask for details after my inquiry.  I asked the receptionist if their offices were accessible, she replied, of course, like I was asking if she can cut her food.  Her quip after my follow-up query quickly put me in a quandary as I was puzzled.  I clarified by asking if there are steps to access her facility, and she said, yes, we have a flight of steps.  This situation reminded me once again that most people have no idea what ADA truly means or even who requires it.

If you have never used a wheelchair from the seated position, you probably have no clue about the needs.  Us wheeled warriors are not merely asking for things for the cool factor but because they help make our lives more independently manageable.  Then I rolled up next to some steep steps with a ramp that was just as steep next to it, and I was disappointed.  I understood that the organization who built this ramp had never used a wheelchair and probably never saw one in action.

I pondered my accessibility options when I rolled into the bathroom of this fast-food restaurant.  I went into the accessible stall and found the grab bar was missing, and it appeared it had been gone for a while.  I spoke to the manager, who said it recently came down, and they were waiting for the repairman to rehang it.  I bit my tongue and said nothing even though signs showed the contrary to his claim for this missing mechanism.  I returned several months later for lunch during another outing and saw the grab bar was still down.  This golden arches facility should be ashamed of itself, yet sadly, there is no enforcement for the truly non-existent requirements. 

I rolled into the neurology clinic to see my neurologist as I had no health insurance.  After my appointment, I needed to use the restroom before the car ride home.  I opened the bathroom door, and the room was set up very well for a wheelchair as it was a large room with one commode and sink.  I would expect nothing less from a hospital neurology clinic where many patients use wheelchairs.  I held the door with one hand, and with my other hand, I began to try to push myself into the room with no luck.  A woman saw me struggling and held the door for me, and I continued to struggle for several minutes with no progress.  This is a hospital, no less with an ADA compliant bathroom on the inside but no way to get through the door.  Let me clarify that I had a narrow chair, and this was a hospital. 

The following is my understanding of the rules laid out by the Americans with Disabilities Act of 1990 as it was explained to me.  The ADA regulations are mandated for government facilities and only suggestions for everyone else.  Private property like restaurants and shopping malls are not required to implement these standards.  Do not get me wrong to be inclusive to all potential customers; most companies wisely use these standards.  However, some businesses apply these orders more loosely as they do not want to spend the needed money.       

So when you visit a non-government building, and the accessibility options are few and far between, stay calm.  At this point, find the manager and explain what is missing and the benefits to many of said item.  They probably do not want to spend the money on every medical device out there but explain your reasoning, and hopefully, they will acquiesce.  If they understand how the equipment would help many possible customers, it only makes sense to buy it.  Sadly, we have to poke and prod for some companies to do the right thing, yet I hope in the future things will just be.

Afternote: To all those who do not use a wheelchair, you may have empathy for us wheeled wonders, but your understanding is more important.  Merely being around or even living with an individual using one of these mechanical marvels is not enough to teach you real knowledge.  I have recently seen many videos on Youtube of people taking the wheelchair for a day challenge.  I saw a video of a woman who uses a chair, and her long time husband took this twenty-four-hour dare.  He was amazed after how much his knowledge grew after experiencing life from the seated position.  Think about it this way: How much can you learn about driving a car sitting in the passenger seat?  If you dare to take the wheelchair for a day or even half a day challenge, let me know. I would love to hear from you about your experience.   

People with disabilities want to be welcomed too.

Possession Obsession…

I found true beauty in the love of my life, and she has grace and elegance like none before her.  My lovely has a poetic symmetry allowing for smooth Fred Astaire-like movements while having Marilyn Monroe’s curves.  This glamorous Venus enables me to be myself while helping to keep my independence.  However, to receive this gift from the heavens was a difficult battle from the start.  To obtain this alluring artistry, I needed real fortitude and strong tenacity as the dissension was discouragingly disheartening.  Allow me to tell you the story of getting my first fantastically fitted and life-altering wheelchair.

My first wheelchair was a standard hospital-style wheelchair I received from a donation program.  The guy from this awarding agency told me ninety-nine percent of their requests are for power wheelchairs.  He explained they would not ask for my donated chair back and I should plan to keep this heavyweight hand-me-down.  This chair was sixty-five pounds and folded but did not disassemble, and its size and weight made it very difficult to put into most vehicles.  Although my mom often exercises and is relatively fit, she struggled to put my chair into her SUV.

After a lengthy discussion with my doctor, she prescribed an ultralight wheelchair.  I took the prescription to a local seating clinic, where the discouraging part of the story begins.  I rolled into the clinic in my wheelchair that was oversized and ill-fitting for my greatly gaunt body.  They helped me sit on a slightly padded table to begin to take a plethora of body measurements.  This assessment ensured this chariot would fit me comfortably because, as they say, measure twice cut once.  Someone using this personally sized chair for such a long time needs anything encouraging complete comfort.

As a thirty-eight-year-old man in relatively good health, her next statement threw me for a loop.  Not talking to me about my options, she merely asked what I was looking for in a power chair.  We did not discuss the benefits of different styles, so there was no mention of the option of manual wheelchairs and their advantages.  I quickly spoke up and vehemently said I wanted a manual wheelchair.  She explained to me power chairs are much easier to pass through Medicare.  I explained how that was nice, but I reiterated fervently I wanted a manual wheelchair.

After way too much coaxing, they lowered me onto a manual wheelchair that loosely fitted my frame.  This temporary chair was used to test my mobility ability and my strength to self-propel.  I was too stubborn to say, uncle, as I ran through the paces up and down a ramp and over several speedbumps.  They doubted my conviction and continued to challenge my endurance by having me push myself down a long hallway.  This relentless testing proved I am a bullheaded Marine who was unwilling to back down from this exhausting investigation of my capabilities.

My current wheelchair is custom-fit for me and only weighs just over forty pounds.  This lack of bulk allows me to propel myself in most places while not feeling like I am pushing a tank.  The chair disassembles and reassembles with ease and can fit into vehicles from super small to the sizably substantial.  The tires have airless inserts eliminating flat tires or needs for manual manipulation of an air pump.  It has indeed helped me keep my self-reliance and lengthens the list of places I can traverse.

I have been successfully using a manual wheelchair for nine years and even completed a 5k in this seat.  This seating professional should have focused on my physical needs and not her financial wants.  Sadly I believe there are plenty of kickbacks to pad bank accounts nicely.  If you are a person who needs a perfectly precise power chair, there is no question you should have one.  However, I wonder how many people were emphatically encouraged to get a power chair they did not need.  The greed in society is powerful, prevalent, and problematic, and I do not know what we can do to resolve this issue.

Unfortunately, people become self-focused many times in this world, asking themselves what they can gain from this.  This me-ism based world can truly hurt those in need and benefit those looking to get just a little more for themselves.  We must be diligent in knowing what we need to be heroic and heard the reasoning for our desires.  Most importantly, we need to be courageous, ask questions, and stand firm in defense of our ideals.

Be strong vocally and get strong physically.