Horrified, mortified, and terrified…

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

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

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

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

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

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

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


Dr. Jekyll and MS hide…

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

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

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

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

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

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

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

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

This diabolical demon often tells me resistance is futile.