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.