Fly me to the moon, wheelchair edition…

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.

My MS employment potentiality…

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.

Grand theft auto-immune…

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.

The love of my MS life…

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.

My MS on a bad day…

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!