Disclaimer alert: I have visited the darkness, stood on the ledge, and peered over, questioning everything deciding if I wanted to continue on this road called life. After coming back from looking into the eyes of the Ender, I chose never to question things the same again. I say that to say this, my struggles may be daily and seemingly endless, yet my attitude reminds me every moment’s misery is a choice. In this blog, I discuss these situations light-heartedly yet do not mistake my jovial attitude as total ignorance towards the challenges of my life. I am not saying my life is more complicated or even more straightforward than anyone else, we all have difficulties, but they are all different. Lastly, do not look at a person with MS or any medical condition on a TV show or movie and think it is accurate because it is not.
People periodically pose a perplexing query to me. Occasionally others say I probably exaggerate my blogs to be more impactful and wonder what MS is genuinely like. These periodic prods from people primarily push me to clarify the facts of how MS affects me. My life as an MSer is complicated to describe because you will not understand it unless you have lived it. Even others who use wheelchairs may not understand one hundred percent because our chariots are all built differently since our needs vary drastically. So let me share one seemingly simple stint of life for most taking only a few minutes while it becomes a laborious job for me. On an average day, it will swiftly switch into a daunting daily duty that can take me nearly one hour.
I wake up and do not hit the snooze button because my mom taught me when I was young, sleeping in is burning daylight, so I get up. I wake up on the left side of my bed, and to get out of bed, it is a wrestling match of Epic Proportion. Sadly, before I even move, my legs go into a stiff spasm tighter than the core of a baseball. I know how to massage it out to make it stop hurting, but the spasm simply stiffens my entire body, so I cannot bend it and must painfully wait it out.
My next challenge is to rotate myself counterclockwise ninety degrees, so my feet dangle over the edge of the bed. Any movement is made more arduous by my leg muscles that constantly play a movement game. Roulette is the game name, and torturing Scott is how it reins the same lame game. As I twist and turn, I grab the bed sheets and pull towards the foot of my bed, and continue the leg wrestling with myself. While I try to scuffle and shuffle on my bed ruffle, my leg muscles take turns tightening in opposing directions causing various problems against my every movement.
When my quadriceps muscles take their turn, they shoot my legs straight out and stiffen them like I am in a planking competition. I never make any movement quickly, and now it is my hamstring muscles that tighten as I sit up on the edge of the bed. While this muscle tightening pulled my leg in instead of out, causing its own set of problems. This game between my leg muscles pushing out and pulling in means I only have a few seconds before I can expect the next shift. I quickly get proper pad placement and positioning and prepare for my posterior propulsion. I massage my thigh muscles to keep them from spasming for a few minutes as I prepare for my lift and shift. After several additional minutes, I can do a derriere drop directly onto my wheelchair seat.
All of this maneuvering so far has only taken thirty minutes and has moved pretty smoothly, all things considered. So let me stop for the interactive part of the show. Imagine you went out to dinner with some friends and you had some food that did not agree with you. When you get up to rush to the bathroom, the previous scene is keeping you from quickly getting to where you need to go. Could you make it to the toilet, or do you have to make a sixty-minute clean-up part of your morning? Some of us do not have the luxury of deciding and is chosen for us. And it is never the easier path.
Next Interactive part. Preparing for bed, you must take off your day clothes and put on your PJs. First, sit on a high-back chair and try to remove your clothes without standing or getting any assistance from your legs. Then after you remove them, put on your PJs while continuing to sit without the aid of your legs. For some wheelchair users, this is an easy task, yet for some of us, it is not.
It is difficult when you are in a wheelchair to clean up a big mess. Let me clarify when you are in a wheelchair and you live alone, every mess is a big mess. For example, the other day, I tried to scramble a couple of eggs and microwaved them when I dropped the mug and raw eggs onto the floor. It took me just over half an hour to clean up as much as I could. I then had to have a friend come over and clean the rest of the eggs. My friends and family are few and far between, but they can attest that I do not discuss this kind of stuff with them. I only talk about things if I can make a joke out of it and make light of any situation. I never want to be seen as the constant complainer or playing the woe-is-me card or even looking for pity, making people want to avoid me. Life is ever-changing, and life with a medical condition endlessly evolves like the numbers on the stock market.
Disappointments are inevitable, but misery is optional.