I received my very first custom fit light wheelchair in early 2012. My family in Florida had been asking me to visit with them since 2010. Their beseeching was for me to stay with them for two months. I decided to accept this proposition and planned to visit in the winter of 2013- 2014. Since a wheelchair made me more mobile, this trip would be manageable. This visit was going to be over a year away, so I knew that I had time to plan for everything carefully. For your knowledge life in a chair also involves geometry and spatial reasoning. The importance of this information will become apparent later in the story.

Anyone that knows me can probably tell you that I am a scheduler and a planner. This invitation to stay with family in Florida was going to be for eight weeks. I had not traveled for nearly two decades, and now I was going to fly with a medical condition. A trip like this with multiple sclerosis was going to be a gargantuan undertaking. It was not helpful that I did not yet comprehend my new permanent petulant plight. I would need to think slowly and anticipate every possible issue that could come up.

I began making checklists including things that I needed for both my carry-on and checked bags. I had a list of the things that I needed for my house as well because I would be gone for two months. There was a requirement for a tabulation of all items that I desperately desired. This desideratum for the trip included luggage and the like. I also had to stop my mail, cable and put several of my lights on timers. Making sure that my medication was refilled was essential. Lastly and most importantly I had to set-up a ride to and from the airport.

I did a lot of research learning the ins-and-outs of air travel with a wheelchair. All of my studying showed me the fundamental things that were not common knowledge. This information also talked about what one needs to know about going through the security checkpoint in a chair. Erudition informed me of the value of an aisle chair to those of us in wheelchairs. It also explained the reason to avoid this assistive boarding device when possible.

I found a great airline company that was not only affordable but also had excellent customer service. I do not like to advertise for a company so for the sake of this blog I will call them Zouth Vest. They are the last company that still allows a traveler to have two checked bags at no cost. This company also allows each journeyman to have one carry-on bag with no fee. I have heard how many airlines are charging for most things like pillows, blankets, and even peanuts.

We pulled the car up to the check-in desk for Zouth Vest airlines. They were wearing big smiles like kids getting their favorite toy at Christmas. These happy people checked me in entirely within a few minutes. One ZV employee then asked if I would like her to push me to my gate as she took me there. As a very independent guy, I said no thank you. I did not want to feel like the feeble. Sadly I did not know just how far the gate was. The circuitous route to the gate was a vicious cycle of strain, numbness, and pain that made this journey a struggle.

Everyone has to go through a security check in, and wheelchair users are no different. As I was in the security area, the wait was brief. The security person had me remove my belt and shoes. I was required to place them in a grey bin to be passed through the scanner. As he began to do the pat-down, he was very thorough and explained his every move. I appreciated that he made direct eye contact with me while clarifying every step he would make. For my ease of use, I had a large key ring on my pants zipper. This seemingly hidden metal ring made him jumpy when he first saw it. However, as soon as he grabbed it his comment was “oh” and then he moved on.

I had dropped a piece of paper and quickly leaned forward to pick it up. The wheelchair casters sit behind the leg rests making the chair tip forward. Like a slow-motion action scene, I tipped forward falling onto the floor. I quickly tried to turn to get back into the chair, but my legs were as sturdy as pipe cleaners. As fast as a cheetah attacks a gazelle the security guy grabbed me. He picked me up off of the floor and carefully put me back into my wheelchair. He was as gentle as putting his infant to bed. Thankfully I only hurt my pride that day.

After I left the security area, it was back to the labyrinthine hallways of the airport. We still had not arrived at my gate. The woman that brought me from the parking lot passed the baton and handed me off. The new Zouth Vest employee smiled just as much as the previous staff member. As we moved down the corridor, she offered to stop at the snack kiosk and the restrooms. I was as hungry as a grizzly bear, and then this need for food was squelched by the absurdly high prices. A bag of vending machine size chips should not cost nearly four dollars. Do airports not know the prices everywhere else? Sorry for the digression.

We rolled up to the gate where I met another extremely happy ZV employee. This gentleman began clicking on his keyboard, and within minutes he told me all about my flight. He let me know my takeoff and landing times and that I had no layover. This employee made me aware of when the plane would begin boarding. It was also brought to my attention that wheelchair users would board first. I then waited just over an hour for my plane to arrive.

When the Zouth Vest plane began boarding, I was the first one to be loaded. They do not have assigned seating, so it is “first come first serve.” The people in manual chairs are given the option to roll themselves onto the plane and transfer into a seat. This movement will enable them to eliminate the aisle chair as a necessary assistive boarding device. Once I rolled onto the plane and shifted my rump into the seat I did not move again. I did not move an inch until we landed in Orlando Florida about two hours later.

The last time that I flew on a plane was 1995, so I was unaware of the many new gate guidelines. After the ambulatory people disembarked, it was then time for the disabled to deplane. One of the crew brought my wheelchair, so I did the reverse of when I boarded the plane. I was then rolled out to the gate area where I did not know that my family could not meet me. I told the ZV employee that I was okay and required no more assistance. I then took out my cell phone and called my mom asking where she was.

“I am right here at the gate,” she said. “No mom I just got off the plane, and I am here at the gate, and I do not see you” I replied. I asked a woman who was quietly reading a book where the families meet their kin. I was told to go down this hall and make the first left past the second snack kiosk. At that point, I get on the first train, and that would take me to the building for meeting my family. Needless to say, her words were as clear as mud because she sputtered her directions quickly.

I set off in search of the first snack bar or was it the second? This was turning into another circuitous journey of over the river and through the woods. I met an airport employee that thought that I looked lost. I began to tell her my long story of how I just received my wheelchair and that I have not traveled since 1995. After I did some explaining, she decided that it was just easier to push me the rest of the way.

I found my family and had an otherwise enjoyable two-month visit. I realize that most people think that wheelchair life is effortless. You just sit in this wheeled chariot and roll around, and that cannot be farther from the truth. You must always be aware of the length, width and general footprint of your rolling apparatus. The life of a chair user takes muscles that most do not possess. As for air travel for a wheelchair neophyte, it is an ordeal that is not for the faint of heart.

The blog for this week has been canceled due to a blogging position that has been offered to me. We still need to nail down the details of everything that they require from me. Honestly, I did not think that I was good enough as a blogger for a magazine. However, my self-deprecating opinion has since been corrected several times. They especially enjoyed my MS blog entries as this will be for a national MS magazine. I will still be posting entries here on my personal blog because this job will not be a full-time position.

This is my understanding although I do not know any of this for a fact yet. The periodic publication employees will pick a topic and pass it out to all of us bloggers. At that point, we writers will type something out for the magazine staff to peruse. The team then picks some of their favorite entries and adds them to the upcoming issue. I do not know any of the blog details yet like how long we will have to write these words. It typically takes me one and sometimes two weeks to complete a three-page entry for my personal blog.

They are currently taking my four-part twelve-page MS story and significantly condensing it. It is my understanding that this abbreviated version will be added to the spring issue. I honestly did not ever think that my story would be in a magazine. Who knows maybe my memoir can help someone dealing with their own difficult situation. I have seen my life significantly flipped and turned upside down in the past five and half years. I have a new house, friends, I am physically stronger and medically stable for nearly ten years. At this point, I cannot wait to see what will accentuate my life next.

I am a little bit nervous because I have never written on demand. I have read a few of the past blogs, and I hope that I can do as well. Let’s see what I can do. Not to mention I come up with my topics myself as I write. We will see how this chapter of my life continues to evolve. I want to slide farther from the place that I was and move closer to the place that I should be. Again stay tuned because I will continue to post on this site.

Many people over the years have asked me if I have thought about driving. They eagerly remind me how hand controls have made this possible for many individuals. My response is that my hand-eye coordination has always been lackluster. I explain that I am really good at Grand Theft Auto. Then I clarify that I am really good at crashing the cars on Grand Theft Auto. I guess that crashing vehicles in real life would be frowned upon.

However, I have recently been contemplating copious cavalcades. I could be making daily trips here and there continuing to master my self-reliance. The goal is to not burden me with needing to count on others. I currently feel enslaved by the absolute dependence on people and not myself. The deprivation of freedom that I feel from the shackles of dependency aggravates me to no end. At this point, I need to start looking at all of the options before me. I need to see what I can be doing differently.

Shortly after my diagnosis, I had to give up driving because my vision went haywire. Sitting at home alone and no way to go anywhere and no one to take me anyplace was disheartening. Several years later I bought a car after being told that my vision had improved. I was informed that I could only drive in the daylight and yet this new found freedom was exciting. I was continually thinking of all of the places that I would go and all of the people that I would see. I did not realize until after I bought my car that I had nowhere to go. I did not consider that I had no one to see. I was disappointed with this new discouraging dilemma.

I mentioned once before that I currently use COTA Mainstream for my transportation. I talked about it being a daunting daily duty that is a considerable strain. Firstly, I am in a non-ADA area meaning that last minute trips are out of the realm of possibilities. Next, plans cannot be made too far in advance either. Each time that I travel the round trip costs me ten dollars. At these prices the pool trips alone cost me thirty dollars per week.

Using this busing system requires significant time and energy. The minutes multiplied by days spent sitting on hold waiting to talk to scheduling. The hours waiting for the bus to arrive-many times late-quickly adds up. To guarantee that I will be delivered to my appointment on time I am picked up exceptionally early. When I told them that my appointment was at ten, they picked me up at seven thirty. After this early pick-up, they deliver me to my final destination two hours early at eight. Ever since the Marine Corps, I would prefer to be early. However, two hours before my gig is quite ridiculous?

As of late, I have been considering my driving options. I see nothing standing in my way now that I have been medically stable for over six years. The Veterans Administration might help in any one of a variety of ways. Of course with the VA it usually comes down to several significant factors. The first is the percentage of disability that you are from ten to one hundred present in multiples of ten. The next is whether your disability is service connected. How many people apply for assistance in your area also affects what you get. Lastly, where you are located geographically plays an essential role.

Every state gets a specific sum of money and a person to control those dollars. This is why I have seen people in Florida, for example, quickly get a lot. I have seen someone specific in FL get a loaded customized handicap adapted van. This gentleman also received the Cadillac of power wheelchairs. On the other hand in Ohio, I have not had the same easy time. The only differences between this Floridian and I are our geographic location and ages.

My next battle with the VA is going to be all of the driving issues. These issues include driving school, testing, and attaining this adapted vehicle to cruise around town. There is a school to make sure that you are not “winging it.” This class will teach you the daily driving skills that you will need not to cause an accident. They want to be sure that you are a safe driver, especially with hand controls. Then the final exam challenges the skills that you learned during the class.

As you can see, there is a lot of red tape that I must navigate through. I am writing this blog in mid-July 2018. My prediction is that it will be at least a year before I receive a response. This application involves a lot of money. The more money that is concerned the longer the wait time. My last application with the VA was approved in two and a half years. This means that I am probably being overly optimistic in my anticipation of accelerated approval. Of course, this is all in hopes of me actually getting approved though I may not.

Having transportation will help in every aspect of my life. I will be able to eliminate the stress of the COTA Mainstream busing system. There will be choices available to me that I did not have when I had no car. The option to go to the grocery store or having the food delivered to my house is a huge benefit. Do I want to rush out of the pool or is there someone that I want to talk to? We often take things like driving for granted until these abilities are taken from us. Be thankful for everything that you have because we are all a mere frogs’ hair away from losing everything.

Some of my recent blogs have not been funny, but that does not mean they are sad they are just facts. At times these blogs come out of me as comical and other times the facts merely flow out and nothing else. Never mistake my lack of humor for sadness. Unhappiness is so far in my rearview mirror that it is a mere blip in my memory bank. Life for us all is about perspective and attitude. I am able to laugh at myself through self-deprecation, and I can see the funny in nearly everything. This ability makes the challenges of life easy to manage.

I found true beauty in the love of my life. She has grace and elegance like none before her. This glamorous Venus allows me to be myself while helping to keep my independence. She has a poetic symmetry that allows for smooth Fred Astaire like movements. However, to receive this gift from the heavens was a difficult battle. To attain my alluring lovely, I needed true fortitude and strong tenacity. In the beginning, the dissension that I received was incredibly disheartening.

Allow me to tell you the story of getting my fantastically fitted and life-altering wheelchair. There are many different styles of these transport mechanisms including both power and manual. These wheeled apparatuses are more than just a way to get from point A to point B. They are miraculous machines that allow riders to be the indomitable warrior that they desire. Creature comforts and usability of these magical marvels is the primary mission. If an ambulatory person has an uncomfortable seat, they naturally move to a new place. The rider of these contraptions does not have the relocation abilities of peripatetic individuals.

Power wheelchairs include electric scooters and motor-driven portable chairs. This list also contains juiced full-sized chairs and elevating wheelchairs that are battery powered. My issue with electric wheelchairs is that many people who use them do not need them. Do not misunderstand me if you absolutely need one then they are irreplaceable. I will get back to this conversation in a minute.

As for manual wheelchairs generally, there are four styles to discuss. There are the transport, folding, rigid, and sports wheelchairs. Another method to differentiate the manual collection is by weight. The first category is the standard wheelchairs. At sixty to seventy pounds they are great for large hospitals. Next are the light wheelchairs that weigh in at thirty to forty pounds. This slightly smaller stature makes them more suitable for small medical offices. The ultra-lightweight wheelchairs weigh less than twenty pounds. These uber-light chairs are best for personal use. These featherweights can be slung into cars with no assistance and with only minor disassembly.

My first wheelchair was a standard hospital style wheelchair. I received this classic manual wheelchair from a unique program that I found on the internet. The guy from this giving agency told me how 99% of their requests are for power wheelchairs. He explained that they would not ask for it back and that I should just plan to keep this heavyweight. This chair was sixty pounds and folded, but it did not come apart. The size and weight made it very difficult to put into most vehicles. Although my mom is not weak, it was a struggle for her to put it in or remove it from the car.

After a long discussion, my doctor prescribed an ultralight wheelchair. I took this prescription to a local seating clinic where the discouraging part of the story begins. I rolled into the room in my wheelchair that was oversized for my thin frame. They helped me to sit on a slightly padded table. Here they began to take a plethora of my body measurements. This dimension taking was to ensure that this seat would fit me comfortably. Someone using this personally sized chariot for such a long time needs anything that encourages total comfort.

As a thirty-eight-year-old guy 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 had no discussion of the benefits of the different chairs. There was no mention of the option of manual wheelchairs and their advantages. I quickly spoke up and said that I wanted a manual wheelchair. “Power chairs are much easier to pass through Medicare,” she said. I explained how that was nice. Then I reiterated fervently how I wanted a manual wheelchair.

When I look back, I realize how that was probably about money. The commission or the kickback on a forty thousand dollar power chair I am sure is high. On the other hand on a five thousand dollar manual wheelchair, the profit is much less. These seating representatives are supposed to look out for the best interest of the end user. Transporting a nearly three hundred pound oversized power chair is not easy. A massive machine like that does not fit into large SUV’s not to mention the average car.

After way too much cajoling, I was lowered onto a manual wheelchair. This chair was adequately fitted to my frame making it much easier to self-propel. I was too stubborn to say, uncle, as I was run through the paces. Up and down a ramp and over several speedbumps they doubted my conviction. Continuing to challenge my abilities I was then asked to push down a long hallway. This relentless testing proved that I am a bullheaded Marine. I was not willing to back down from this demanding investigation of my capabilities.

My current wheelchair is custom-fit for me and only weighs twenty-five pounds. This lack of bulk allows me to propel myself while not feeling like I am pushing a tank. The chair disassembles and reassembles with great ease and is child’s play to fit into most vehicles. The tires have airless inserts eliminating flat tires or the need for an air pump. It has indeed helped me keep my self-reliance and lengthens the list of places that I can go.

My issue is not with all powerchair users. I am confident that many were persuaded to get these motorized machines unnecessarily. I imagine that some were also enticed by the idea of self-movement by the flick of a lever. The problem is that this laziness breeds weight gain and poor health. The lack of movement creates weakness in all muscles. This fragility demands deeper dependency on devices that aid and less on one’s self. I wonder how many of these mechanisms are out there that are or were unnecessary.

They say that we are living in exciting times and I agree. We sent men to the moon with a low amount of technology. There is more of this wizardry in the average smartphone. The downside to all of this tech is that it encourages laziness. How many of us can remember the phone numbers of our friends if our phone dies? Do you stumble when typing without spellcheck? These power wheelchairs force immobility and demand more inactivity. This is a vicious cycle that is nearly impossible to break. I do not know about you, but I will continue to use it until I lose it.

I said that I would not post a new blog entry for two weeks. However, my family left early, and I had this topic initiated. It actually came together faster than I expected. I hope that you enjoyed it as much as I liked writing it.

This blog entry is the sibling to my previous post. However, it seems silly to detail minute by minute again as most things are the same. The only parts that I will detail are how my MS negatively impacts my day. You will also read how I continually set timers. I know that it seems odd to set these alarms. However, they require me to rest the full amount of time that I have set. Too many times I have tried to repeat something too quickly, and I failed.

I have noticed that the last few weeks specifically have been a physical struggle. My leg spasms during dressing and transfers have become more frequent. My leg strength has also been diminishing in that same time frame. I have said before that there is a fine line between doing too much and not enough. My drastically positive swimming results have lured me into a false sense of security. These outcomes happened so quickly that I wanted to do more, but much too fast. These conflicting results remind me that I need to be more cautiously aware. All of this is in comparison to my Pre-MS Days.

As I wake up this morning, I shimmy my legs to the side of the bed. I quickly notice some troubling signs. These appendages of mine are supposed to bend as they meet gravity yet they do not. There is a lack of willingness from my legs to give in to the earth pull. This difficulty makes it difficult to sit upright while sadly bringing a slow progression to my day. This tug of war between gravity and my spamming legs is like a sloth wrestling match. It takes a while for my legs to comply yet they gradually fall towards the ground. I am finally able to sit up, so I pull my wheelchair closer.

I begin the process to transfer to my wheelchair. Leery after the great gravity altercation I cautiously calculate the crossover to my chair. I pull my chair as close to the bed as possible while also scooting it forward. This new location will help minimize the needed leap of my rump to the seat. I place my right fist on the right side of the wheelchair cushion. At the same time, I put my left clenched hand on the bed. This action helps me to prepare for the fling and flop that is about to occur. I push down simultaneously with both hands. This motion allows me to throw my derriere onto the wheelchair seat.

I have a transfer board to aid me in moves like this. However, I have tried it several times with no success. Every time that I have attempted to use my slide board it has been more of a hindrance than a help. I suppose there may be a correct way to use slide boards. Sadly I was never taught. I would say that I need to educate myself on youtube. They have many styles for various situations, yet my problem is a simple lack of knowledge. Most of these boards are wood although a plastic one would be great for my shower transfers.

As my rear lands on the seat cushion, I feel slightly unbalanced. I am as wobbly as a spinning top and quickly grab for the bed. The vertiginous air from the wings of a fly would have knocked me over. Down I go *whoosh* splatting onto the floor. I quickly run through all of my limbs checking all of my vital parts. I verify that I nothing have broken and that as I get up nothing will poke, prod or pinch me. The adrenaline after such a crash can mask any pain. This time I have a few abrasions, but nothing significant is injured.

I begin to get dressed to go into public. I dress differently while in society than I do when I stay home. I carefully put each foot through the leg holes of my shorts. Using my hands, I deliberately place each foot on the ground in front of my wheelchair. I calculate the spot that is far enough away from both the wall and my chair to set my feet. My feet need to be far enough from the wall so that I lean a little towards the mounted grab bar. If I am too close to the footrest on my chair, the metal plate will dig into my heels.

When I thrust myself upward, I am standing for a microsecond and then my knee buckles. Let me explain a relevant fact that is instrumental to the next part of the story. The sideguards on my wheelchair have several bolts that broke off. This damaged condition forced me to remove these side pieces until I can repair them. The left leg was the culprit, and I fell back and to the left. My arm slid precisely through the spokes and the seat frame.

Now I am in a bit of a pickle. I have legs that do not have the strength to straighten up and quickly pull my arm free. My fingers are entangled in the spokes so I cannot roll the chair without losing a finger or two. I try pulling myself up using the vanity, but my legs are as strong as cooked pasta. My cell phone slid across the floor out of reach when I fell so I cannot call anyone. I sat there for several minutes questioning my curious query.

I struggled to attempt to push the quick release button of the wheel without rotating it. The first endeavor took several minutes and a few pinches to my phalanges. This try gave me one-quarter of an inch, but with no success. At this point, I thought of the movie 127 hours, but I am not that crazy. The second venture whipped me out of all remaining strength that I had. Thankfully it gave me another quarter of an inch equaling just enough space to get my arm out. I quietly lay on the floor in the bathroom for five minutes.

I purposely left the part of getting off of the floor and back into the chair for last. This part was left out because all falls are different, but the recoveries are about the same. There are three parts to getting up after a tumble. Importantly for my recovery, I must be wearing shoes. I need to put on shoes that give me grip from the rubber soles. At this point, I need to use my hands to position my lower limbs. I do this to make my feet correctly situated for my sneakers. These movements are tricky when your legs do not cooperate and fight you along the way.

The re-positioning of my body is my priority at this point. These adjustments are needed because when I collapse my limbs go everywhere. Thrown an inch or a foot, it is a real battle royale to pull me together. I must scoot around and arrange my body at the front of the wheelchair. This shift usually takes some time as my floor shuffle is extremely slow. The next challenge is to place my rump on the footrest.

This new location elevates me about four inches. Now I am closer to the final destination of my posterior. I want to help and not hinder my thrust into the seat, so I arrange my legs accordingly. After all of this struggle, I tell Google to set a timer for one minute. This sixty-second respite prepares my body for the next exhausting task.

A year of vigorous strength training has made my arms especially my triceps much stronger. I place each hand on the bend of the leg rest on my wheelchair. I grip tightly and forcefully push myself upward. With some struggle, I land on the seat and quickly try to scoot myself back. My legs spasm so until I get the needed leg relaxation this halts my slide back into the seat. Again I tell my Google home device to set the alarm for one minute. I rest and then I begin to adjust my legs onto the footrest carefully. Finally, I move on to the task that I planned before I fell.

I roll up to a small SUV that will be my transportation for the afternoon. I always hope to see a slingshot or a springboard to get me into the vehicle. Sadly I am disappointed because no car company offers that upgrade. Preparing to get into the car I pull my chair up at a slight angle and as close as I can get. Holding the car door with my right hand and the passenger seat with my left I hurl myself upward. Then I quickly move my right hand onto the grab handle above the passenger window.

Many automobile seats rise a bit on the sides like shallow bucket seats. The stars align incorrectly, and I do not pull up hard enough at the right moment. My pants catch on the outside of the seat cushion where it starts to rise. This halt causes me to get hung up so that I can lift no further. My first response is to pull harder awarding me no success. My fast-acting driver gives me a lift causing me to make contact correctly with the landing pad. However, several times I have even slid back onto the wheelchair to reset and retry.

My leg spasms are an inconvenience that slows me down. During these spasms, my legs look like a soccer kick caught on camera. This muscle stiffening does not generally cause me to fall. Never the less it slows down all of my movements, and I must wait for those muscles to calm. The real trouble comes when I am getting in or out of the car during the rain. Transferring to or from a vehicle is time-consuming in of its self. This slowness during the rain makes staying dry during these transfers an impossible task.

As you can see, some days are good and some days are not so good. That said, the challenging days are more manageable than before. I am now stronger than in my early MS days making my difficult days less severe. I have the physical capability to do what is needed to accomplish most tasks. Now that I have had Multiple Sclerosis for nearly twenty years I am wiser. I can problem-solve as a situation arises. I also do not panic as I did before. I may think a bit slower, but I have the patience to take my time and figure things out. Somedays my recoveries are laborious and slow, and I am ok with that.

I was able to complete most of this blog before my family arrived. I also had the opportunity while they were away visiting others to finish and post it on time. This blog entry will be my last post for maybe two weeks. Everyone have a fun and safe Fourth of July celebration!

This is how multiple Sclerosis significantly impacts my daily life. I will explain everything step by step starting from when I first open my eyes in the morning. I have told you that I have Multiple Sclerosis and you may in fact personally know someone with MS. This blog will give you a glimpse into how this disease affects my every move. It may also give you a peek into the battle that your friend is dealing with as well. You may not realize how something minor in your life is a significant concern in mine. Most people take every step that they make for granted.

The bedroom light comes on automatically at 6:44 in the morning. I am a light sleeper, so this wakes me up yet at 6:45 my alarm goes off just in case. My leg muscles need an extra few minutes to wake up, so it takes time to sit upright. As I try to get up my legs stiffen like I was in a planking competition. I must get them to the side of the bed and let gravity bend them towards the ground. My legs then begin to veer in the direction of the floor. At this point, they are as pliable as play-doe that has sat out overnight. Finally, I am able to transfer to my wheelchair. I say the words: “ok google good morning” and my google home device spouts off all about my day.

“Good morning Scott. The time is 6:46 a.m. Right now in Grove City, it’s 70 and sunny. Today in Gove City it will be sunny with a forecasted hi of 85 and a low of 61. On your way to work traffic is light as usual and the drive will take approximately 26 minutes.” (I have the pool where I swim set as my work address) At this point, it lists all of my calendar events one at a time for the entire day. Next, Google tells me everything that I have asked it to remind me of for the day. It closes this rant by saying: “Have a nice day.”

The first thing that I have to do is set up a ride for COTA next week. I am in a COTA non-ADA zone meaning that I can only set up one of my trips per day. COTA scheduling is first to come first serve. The rule is that non-ADA households must wait until the week before the trip. This means that if I want a ride two weeks from today, I have to wait until one week before. It is an incredibly annoying process, but it is the only transportation service for the disabled. “Do not rock the boat when it is the only boat in the water.”

I take my cell phone and roll into the kitchen for breakfast. I want to have eggs, bacon and fried potatoes with a nice glass of orange juice. Then I remember that I just had that like twenty years ago and I do not want the same old same old. So this morning I will have a bowl of cereal instead. I have made sure that everything in my house that I use regularly is within reach. To a visitor, some things may look out of place. Since they do not live here, I am ok with that.

The floorplan of my kitchen is not the best for a wheelchair user. I did not understand that during the design process. If I were to track my daily mileage in my house, the majority would come from my kitchen use. Think of my kitchen as a small school racetrack where my kitchen island is in the center. There is not enough space between the island and the counter to turn around. This lack of space means that I have to retrace my steps many times. I have two options to travel in my kitchen. First is to back-up the length of my kitchen very slowly when needed. Choice number two is to go all the way around the track as it is faster to go forward.

My morning breakfast routine is like this: I go into the kitchen turning on the light. I then roll about twenty feet to the other side of the room where my table is. I set my phone and my wheelchair gloves on the table. Moving an extra five feet allows me to do a 180. I do this turn to end up on the right side of the refrigerator. I then put a towel on my lap to carry the milk as it is cold on my thighs. This towel also stabilizes the liquid filled pitcher while it sits on my legs when I move.

I continue around this track, and I set the milk on the table. From here I get a cereal bowl and spoon from a drawer. All of the lower cabinets in my kitchen are drawers instead of the standard doors. The difference keeps me from having to reach into the back of the cabinets.

After I eat, it is time to clean up. I first turn around so that I end up on the right side of the refrigerator again. I set the milk on a towel on my lap and carry it to the chill chest. Back around this track, I take my dirty bowl to the sink. My kitchen faucet is one that you touch to turn it on and off. This means that I do not have to struggle to reach and set it to the on or off position. I merely touch any place on it that is metal. I load the rinsed bowl and spoon into the dishwasher. I turn off the lights and then go in to brush my teeth and get dressed.

I am apparently getting good at these procedures. So far my legs and I have woken up and transferred into my wheelchair. I listened to my google home device give me my daily rundown. Breakfast and cleanup are complete, and I have used only forty-five minutes. I imagine that this would have taken less time if I was not doing laps around the kitchen island. Every morning I run more laps than a high school track star.

My morning routine at this point is close to everyone else’s. Rolling into the bathroom, I brush my teeth and comb my hair. Actually, I shave my head, and comb er brush my teeth. I also trim the beard hair on my face and shave my neck. I went through nearly a year of no beard trimming during my dark time. It looked pretty ratty, so I want to avoid that happening again. Now it is time to adorn me in clothing.

I take my clothes to the bathroom. This is where I have a wall mounted grab bar to aid in stabilization while standing. The first thing that I do when dressing is put on my socks. Starting one leg at a time, I carefully slide each foot into my shorts. Using my hands, I place each foot one by one onto the ground. It is important to note that when I try to stand proper paw positioning is paramount. I set my feet wider than shoulder-width apart and about three inches in front of the wheelchair. I lunge upward and stabilize myself with the grab bar. Then while holding the bar, I quickly pull up my shorts. I had done the same thing with by briefs moments prior.

Since the advent of the elastic waistband putting my pants on is much more straightforward. Before I switched over to these magical waistbands, I would have significant battles with my pants. It was like watching a WWE wrestling match when I wore those belted pants. The issue: when wearing pants that use a belt you need both hands to pull them up. I need to hold onto the grab bar with one hand leaving me with only one hand to pull up my pants. The next time that you get dressed try to pull up your pants with just one hand. Do not forget that I am stabilizing myself with the other hand.

I use COTA Mainstream three days per week to get to the pool and then home. When COTA arrives on time things run pretty smoothly. However, they are allowed to be and have been more than thirty minutes late. This lack of punctuality can genuinely throw a monkey wrench into my life. I have interacted with many Mainstream drivers. The first question that I always ask is how long they have been a driver for the bus company. Anywhere from one year to several decades is the standard reply. No matter the answer most have been quite friendly and willing to talk.

I roll out of my garage when the bus arrives. COTA has a lift platform that I wheel my chair onto. Then it raises me up to the floor of the bus. This device lifts me so that I can roll on and prepare for the lockdown of straps. I put my medical contraption into place and hand the driver my fare. This chauffeur straps me in and then does some minor paperwork. At this point, we begin our fifteen mile trip usually with a few extra side trips. Ninety-nine percent of the time there has been only one other person on this bus. An extra person means two additional stops. We finally arrive and drop anchor at the community center, and I disembark.

I roll in the community center and say good morning to everyone that I know. That round of conversation takes two maybe three seconds. Moving to the family changing room, I prepare to swim. I get my towels and swim goggles out of the backpack in preparation for aqua therapy. In the pool room, they have a chairlift to aid me in getting into the pool. They put the battery into the chairlift for it to be used. I back up next to the seat and carefully transfer over. From here I use the remote to dunk myself into the pool like a teabag into a cup of hot water.

Today’s blog shows that life is much slower for me now that I am in this wheelchair. In the day that I am describing, we are at ten in the morning. This entry shows how this MS life requires me to think about every move that I make. With this absurdly long description, you can compare your day to mine. The thing to remember is that this is the explanation of a good day. Most of my days run without issues. However, many days cause me significant apprehension. Some days have one or even several problems.

The description of a bad day will have to wait until my next blog entry. I have family staying with me for several weeks. This means that I will not be posting a blog for several weeks. Rest assured one thing: I will be living with my MS and have good and bad days just the same.

I am trying to get the courage to share the more difficult experiences of my early MS days. Several times I wanted to put them down on paper to share these stories. The problem was that it was too emotionally painful. I look back on some of these situations, and I try to think logically. I wonder what the difficulty was. I contemplate the reasoning for my mental conflict. I ponder the possibility of being judged for my actions. Not for doing anything wrong per se, but that I just did not handle the situations “correctly.” Although what does dealing with them correctly mean?

I look at these predicaments from the outside. Someone could say that the answers were so simple. I might be told that a smart person would have seen them. The intense fear that someone might say that I am making mountains out of molehills petrifies me. The emotional struggle should merely be swept under the rug and ignored, they would say. They might say that these should not be debilitating moments that cause lifelong anguish. Wiping these catastrophes from my consciousness should be effortless I could be told.

I had never been faced with anything that I could not contend with. I have done many challenging things in life that would be impossible for most. Every time that I was confronted with these arduous events I prevailed. At times I was sopping wet with blood, sweat, and tears. However, I was always triumphant in the end. These life-altering hardships knocked me down a time or two. However, I quickly got back up dusted myself off and moved forward. I have been faced with many forms of adversity yet I never backed down. Like a zebra that got away from a hungry lion I lived and can tell my story.

I have faced literal mountains in my much younger days. In the southern Rocky Mountains, I hiked while I carried an overloaded backpack. This pack was full of clothing, food, a sleeping bag and a tent for a twelve-day hike. Some areas were so high that plant life could not grow. At times there was such a torrential downpour that we looked for the lifeguard. I was a sixteen-year-boy carrying a thirty-pound backpack for twelve days. I carried this pack well over one hundred miles. This hike was up steep mountains and in areas known for black bears. I never flinched at the venture.

A challenge from ogres and I did not concede. During my Marine Corps days, I quickly learned the meaning of never to back down. I have had men nearly twice my size use their stature to attempt intimidation over me. However, when I stood up my nose to their chest, they backed down. I often wonder if they were terrified of a maniac my size that would stand up to them.

My body had begun to attack itself. This was an onslaught that I was ill-equipped and not prepared for. My new antagonist did not fight fair. Despite demanding that I run, this advisory stole my legs. While robbing me of confidence, this demon required that I ask for help. When I began to research and study how to fight back this vile monster took my vision. For the first time in my life, I was genuinely terrified of the torturous unknown. I had no comprehension of the maleficent evil that was headed straight at me.

I had never really feared anything before. I nearly slid off of the edge of a one hundred and fifty-foot cliff in my younger days. Thankfully, my best friend grabbed me and kept that from happening. I merely looked at him and said: “well that could have been bad.” Yet, there was a deep-seated fear of this destructive beast. This dastardly brute was beyond my understanding. The battle ahead of me was honestly going to be the fight of my life.

So here I sit with a brain loaded with cruel consternation causing memories. I am trying to figure out how to tell these terrifying tales of mine. Thinking about them causes significant anxiety. Writing down the appalling sagas is an impossible undertaking. Talking about them in any form feels insufferable? Putting them into a blog makes them a permanent part of my story. I thought that the idea was to erase them from my brain box and not to solidify them?

At this point, I see two possibilities. They say that time heals all wounds. These cataclysmic events are only sixteen years old and may need another decade. Like a piece of fruit that has been in the bottom of the refrigerator for too long, they may need more time. I suppose that I also need more positive memories. New constructive flashbacks would drown out the torturous nightmares. This action would help me forget that these horrors even exist. I continue to contemplate this complicated cliffhanger.

I have recently begun swimming lessons. It’s hard to believe that a guy my age has never taken swim lessons. I did not learn to swim in the Boy Scouts or even in the Marine Corps. Do not misunderstand me I fumbled through just enough to get by. So I am eager to see what will happen with these new lessons. We will see what adaptations my instructor comes up with for my limitations. ***side note: I just saw a Paralympian swim the 100 meter on his back in 1 minute and 13 seconds and he had no arms! This teaches me: NEVER SAY NEVER***

We had the first swim lesson the today. It was a rough beginning as we were figuring things out. The techniques that were taught to me needed to be adapted to my limitations. When I am swimming my legs are as useful as a waterproof towel. This means that deep thought needs to go into each lesson. As my teacher pondered this problem, I reminded her of the following: I am not going to be in a swim meet. I also, reiterated that my synchronized swimming days are over. Once we found the trick to make things work, I took off!

“Like a game show contestant with a parting gift, she could not believe her eyes.” My instructor was astonished and flabbergasted that I took to swimming this quickly. I began to glide across the pool as gracefully as two ducks fighting for the last piece of bread. It was ugly, but I was swimming. I was personally astounded, stupefied and thunderstruck yes I was at a loss for words at my exceptional new skills.

This aquatic teacher most times can read my nonverbal cues and knows when not to push. My water trainer has been extraordinarily invaluable and puts up with me to boot. My brash and obnoxious personality does not dissuade her from teaching me. Okay, those words have never been used to describe me. However, she still gets a gold star for putting up with me.

It is crucial for you to know how far that I have come. I began at this new pool just over a year ago. The chairlift put me in the water about sixty feet from where my water movement class is held. My instructor had to hold my hands as I slowly and clumsily shuffled to the class. When I was there, I would cling to the wall like a barnacle on the belly of a ship. I did my best to not get in anyone’s way and I avoided the deeper water. When class was over the fitness trainer would take me back the same way.

Helping me keep my independence she showed me how to use the wall to get back and forth. Using the wall was the long way around, but it helped me get used to the water. As humans, we tend to look for ways to make a long route shorter. I cut corners here and there shrinking my trip a little every day. Within several weeks I was stumbling across the middle of the pool all by myself like a big boy.

I began to do more in class and venture away from the wall more and more. Every class I would get farther from and less dependent on the wall. Recognizing my new found bravery this aqua master decided to teach me a few new skills. These new skills are what I call self-rescue techniques. They were to help calm any of my fears of the water that I had.

I start off face first in the water. This position is called the dead man float. From there she showed me several simple movements to get me face up and on my back. I could effortlessly float and breathe while in that position. When I get into trouble, I force myself to go face first and then splish splash I’m face up again.

Let me go back a little farther in my water training history. The first two years at the initial pool that I used was mediocre at best. Don’t get me wrong, I am thankful for my time at that facility. Pool number one changed my mindset about a lot. I met great people who encouraged me to keep my body moving, and I made some lifelong friends too. These people are all older than me and reiterated that “a body at rest tends to stay at rest.” I have learned the importance of fitness. My schedule at that time was a very basic three hours per week.

Just over one year ago I moved to pool number two. The physical changes began to appear expeditiously. This new pool quickly brought out my long forgotten vigor and passion. These physical developments began to stir something inside me. I started to work hard again. I carefully walked the tightrope between too much and not enough exercise. My new routine is more than double of what my previous pool’s schedule was.

I exercise in the water three days each week for nearly two and a half hours each day. The first hour is a leg-centric workout. My legs are my problem child, so I continually work to not allow them to get week. The next twenty minutes are focused on upper body strengthening. I use my upper body for everything so it must become stronger. Next, I do forty minutes of total body fitness as it is vital for me to join my classmates. It is essential that I move every muscle and joint to assure my limberness. The last thirty minutes I take my swim lessons or I swim laps.

I recently had to miss seven days of exercising. I was truly disheartened by the amount of strength that I lost so quickly. Building power takes time, hard work and dedication of which I am not afraid. However, you lose muscle much faster when you stop exercising. It seems that it will take me several weeks to get back on track.

There are numerous benefits to exercising in general. The water is just the method of my choice. Here are some of the ways that I have been positively impacted by this training regimen. Strength is advantageous for everyone in life. Ambulatory people are limited only by twisting, bending or stooping abilities. Often biped individuals take every movement for granted. If you can’t reach something, then you simply move closer or reach farther. Those of us in wheelchairs can only get as close as our chairs will allow us. So we need to make sure that we have all of the strength that we can.

I partially stand to dress. No matter my superpowers of fitness I still put my pants on one leg at a time. When I pull up my pants, I stand next to a wall mounted grab bar. Before this new fitness routine, I could stand, but I was very unstable. I can now let go for more extended periods of time. I am able to hold onto my pants more and hold less on the grab bar. Sometimes at the end of a long day, I need to grasp a little more securely. However, before all of this exercising I would struggle to dress on the bed at the end of the day.

I am now able to move faster from point A to point B. My distance endurance is no longer a challenge. When using Google Maps, they give you several route choices. This group of options lists various time and path calculations. You can avoid the freeways or look for gas stations. Just like Google Maps I needed to think through all of my choices of pathways. I did not have the strength to roll around Willie Nillie. I am no longer dominated by my weak physical capacity. Let’s not get crazy, I still think through my longer moves. I want to work smarter and not harder.

I am stronger at the end of the day now. Even after taking the numerous precautions that I do I occasionally still fall. I am mindful of what was the likely culprit of any fall. When I fall I always yell in annoyance and frustration. However, getting up off of the floor is usually quicker and smoother. My speedier rebound from the floor is made possible because of my new found strength.

My time in the pool has been miraculous, to say the least. I have shared my story so many times that I have forgotten who I have told. I have repeated my tales many times to the same people, and now they tend to avoid discussing fitness around me. If your life were drastically changed for the better, you too would not stop talking about it.

If you are going to do something, then strive for excellence. The truth is that I need this swimming like a flower needs the sun. It gives me a reason to wake up in the morning. It is a “carrot and stick” thing. I do better when I have a goal to reach for. So I always plan for my next target. I like to have a new brass ring to grasp for. For any younger readers the phrase grabbing for the brass ring can be Googled. I did it just to make sure.

So I say to my readers: for your health keep your bodies moving. You never know what is around the bend in life. I did heavy weight lifting before my diagnosis, and I am very thankful that I did. During my early MS days, I did a lot of crawling without the help from my legs. When I fell to the floor getting up was only possible in specific locations in my house. Now I can manage while mostly avoiding crawling. Having strength in life just makes things easier!

I realize that I only have a very few readers on this blog. Actually, my MS story series got 15 to 30 views. That used to bother me until I realized that this blog is more for my benefit than anything. I read several articles explaining how writing helps the writer in several mental methods. Kind of like when you write in a journal-or diary as the case may be-no one reads your private journal. My life other than my swimming, church and this blog is pretty boring. I don’t really have enough post worthy stuff to write in a journal. I am trying to get the courage to tell some of my more difficult early MS days experiences. We will see.

Temperature and MS have a paradoxical relationship. The form of MS that one has determines the severity of any symptoms. These physical alerts can cause exacerbations that significantly challenge life. These manifestations can be uncomplicated like making a person slightly winded. In extreme cases, it can put a person out of commission for several days. I say temperature because MSers can be impacted by either hot or cold. However, most of the MS community is challenged by heat.

Multiple Sclerosis is the gift that keeps on taking. It is complicated for the newly diagnosed to plan for the effects of MS. The reasoning for this lack of preparation ability is twofold. First, the Multiple Sclerosis symptoms vary from person to person and day to day. This means that no one can genuinely warn a new MS patient of what is to come. The second is that it would not compute if an individual were advised. This is because a person’s abilities before MS are incredibly different. They are ingrained from years of experience. These older capabilities are taken for granted after many years of existence.

Without experience, there is no comprehension. This new MS lifestyle means that you have to learn everything all over again. Pre-MS, an individual, can deal with a sweltering day. In a post-MS world, slightly warmer days can zap your strength. This strength elimination in some cases requires several days of respite. Knowledge is the only defender that an MSer has to aid in this new MS life.

I have recently learned that these MS influences can change season to season as well. For me, the heat of last year was truly devastating. I had to keep the thermostat in my house set at 69 degrees. The cold temperature in my house caused me to be negatively affected elsewhere too. Even two or three degrees higher on the thermometer made for a considerable difficulty. There were many days where I just sat in front of a fan for hours. I avoided venturing out without mapping and planning my trip carefully.

One day last summer I was invited to an outdoor event. My cooling vest was new to me, and I had forgotten it at home. I did not think about my wearable cooling device because the weather was excellent. It was a sunny day in Grove City, and everyone at the event enjoyed it. I had been out all morning with no adverse effects. I was totally oblivious as a hot breeze blew in. This warmer wind was a bad omen of what was to come.

I soon began to feel my internal thermometer skyrocket. Like a street magician who makes coins disappear my strength had vanished. I was using a motorized attachment that was controlled by me tapping my wheelchair. I had absolutely no power in my muscles. This meant that I could barely touch the chair to get proper progressive propulsion. My friend would have gladly helped me, but I am a very stubborn guy. I just could not ask her for help. All she could do was stay alert like a century guarding a castle.

I could feel myself getting overheated by the second. So we headed back to the car. I should not have waited so long, but I just would not say “uncle.” It was impossible for me to get into the car like I usually do. It might as well have been a climb to the top of Mount Everest. This temperature felt like I was on the edge of a volcano.

I had an angelic and probable powerlifter on my side. This angel sent from above did not bat an eye at the daunting task at hand. The problem was getting me into the car with absolutely no help from me. I could almost hear her shout “CHALLENGE ACCEPTED!” When I was finally in the car, I could not hold myself upright. I quickly slumped over onto the driver’s seat. I could barely pick up my hand so that she could pull me upright. Finally, she helped me get straightened up and get belted in. With the air conditioner blasting, I began my prolonged recovery.

She got me home, and we continued to sit in the driveway and just talk. I’m pretty sure that she had somewhere to be, but there we sat. The strong manly part of me said, “I am absolutely fine, I got this.” Yet, the MS side of me said “yeah right! Go ahead and step out of the car, I need a good laugh.” We sat there until she felt comfortable that I was ok. I thanked her profusely for the next week.

This all could have been avoided had I thought through every move. Experience now tells me what I need to consider. I did not have the knowledge necessary to plan for this part of my MS life. I now have this situation in my memory bank. This means that a situation like this cannot sneak up on me again. I never want to avoid outings just plan for them more wisely.

This summer the thermostat in my house has continually been set at 75 degrees. I have not had a day like last year’s summer outing. I have been able to survive quite comfortably in these warmer temperatures. The days where I need a long recovery are now few and far between. Now this long recovery takes only twenty minutes under a fan. However, none have been close to that strength eliminating hot day that will live in infamy. Yes, that wording is an overstatement. In life, there are just some things that you will never forget.

“Once bitten twice shy.” The heat was a life-threatening antagonist at the time. Thankfully, that is no longer the case. I currently find myself wearing this cooling vest unnecessarily. I constantly remind myself: “it is better to have it and not need it then need it and not have it.” However, as a bulky cooling vest, it seems a bit excessive. Not to mention the cooling powers last for three or four hours tops. This cooling vest is not an all-day thing.

So to anyone newly diagnosed with Multiple Sclerosis hear my words: listen carefully and act quickly. Listen to other MSers sure. They can usually give you necessary information that can be helpful. More importantly though, listen to your own body. It will give you fair warning when you are receptive to it. Act quickly: if something feels wrong then pay attention and move quickly. The effects of MS symptoms many times come out of nowhere. Things impact MSers much faster and harder than your pre-MS days. So be ready.

Having an exceptional attitude helps with this complicated conundrum called MS. Having the patience of Jobe is just a bonus. If they are bodybuilders or not having great friends saves lives. This heroism happens both literally and figuratively. I will take good friends over a trillion dollars any day of the week and twice on Sunday.

I am still dealing with the selling of my old house. Also, I continually battle with the complications of settling into my new home. A friend reminded me that I should not let my blog sit idle while dealing with these concerns. He reiterated that I should post something so that my fans, I use that term very loosely, do not leave. There are about thirty posts that are currently on my hard drive. They need much editing to reach the mediocracy of my standard posts. The following is something that I have recently learned about.

“Now, on with the countdown”

The idea of feeding the planet in the future is an ongoing discussion. The human race is creeping closer and closer to a planetary population of nine billion people. We humans need protein to aid in healing and growing. Keep in mind that more people eat meat today than a year ago. This means that we must find protein alternatives. At this point, there are mainly two different “alternative meat” camps.

The first is mock meat. The idea is to create meat using plant-based foods. I won’t bore you with all of the details mainly because it’s way above my pay-grade. However, the science that they used was neuroscience. This process was surprising to learn about. These are not the lackluster soy burgers of my younger days. Forms of these meat products are currently on the market. There are restaurants all over the US that carry this burger. A handful of these eateries are near me.

There is one burger, in particular, that is truly astonishing. It is made entirely from vegetables. The looks of the imitation meat patty would fool anyone. In the pre-cooked state, it looks like a real ground beef patty. As a beef forgery, it even bleeds like a real burger. Beet juice is the cause of the bleeding. I have seen many reviews of this product, and it gets rave reviews. This mock meat burger is called the Impossible Burger. If you have the free time, please youtube it.

The second style is lab-grown meat. Small samplings of stem-cells are removed from a live animal. It is important to note that no animal is killed during the cell removal. In the laboratory, they use these cells to grow animal muscle. This animal muscle is real meat.

I should clarify that this meat is not being created for vegetarians. The lab-grown meat is still meat and vegetarians will not eat it. There is also a variety of mock meat that is currently on the market. Vegetarians are already consuming imitation meat products. These new creations are for the carnivorous humans of the world. Nothing spectacular is going on in this lab except for growing real meat while not killing animals. I am seriously flabbergasted!

In blind taste tests, they have fooled many people. All over the United States, you can get these mock burgers in stores and at restaurants. It is expensive in the beginning, as with everything. However, as they become more widely accepted the price will drop.

I am eager to try the new meatless burger creation. I also can’t wait to experience the lab-grown meat creation. Do not misunderstand me I am not looking to become a vegetarian. However, I acknowledge the unnecessary animal cruelty that is involved in feeding humans. I also understand that eating animals has been going on since cavemen. I am just ecstatic about our continual evolution.