An MS transformation
I recently joined a Facebook group for people with multiple sclerosis. The group is awesome and if anyone is looking for an online community where you can ask questions, meet other people in circumstances similar to yours, or just joke and vent, I encourage you to look into it. It is called Friends against the MonSter.
When the friend who started it told me about it, I was a little confused about the title. To me, monster is an affectionate term. I think it comes from being a kid.
When I was maybe eight or nine, Monster Mash by Boris Pickett was fun and huge and my favorite book back then was called How to Take Care of Your Monster by Norman Bridwell. Somehow I lost that book and have never found it again. If anyone knows where I can locate it, please let me know.
Several years later, when my nephew Drew was a grouchy baby living with colic, I took to calling him Drewmonster or Monsterbaby– see, total affection. In my messed up brain, for some reason when I think monster I think cute and cuddly. Thus, the name of the FB group didn’t seem appropriate. It is a page for people living with multiple sclerosis and I have yet to find anything cute and cuddly about that.
Vampire, Zombie, Serial Killer, Alien, Ghost, the specific name of frightening creature is frightening, but the word monster just doesn’t scare me.
Now Drew is a grown man and he and his wife have two little boys of their own. Both kids are adorable, and yes, cute and cuddly. One is just a baby and as innocent as a baby can be. The oldest of the two is 21 months and is smart, funny, delightful, and for the most part, happy. Like his dad, he is also stubborn. Upon this discovery I began to rethink the monster term. Something wasn’t clicking and I think I figured it out.
For 99.9% of the time, the child looks like this.
But when he is exhausted and his stubbornness kicks in, he can suddenly and terrifyingly change. I swear, one time I needed to change his diaper and he didn’t want it to be changed. I am still shuddering from the Linda Blair like look he gave me and had nightmares all that evening. I could literally see the transformation from adorable, perfect little boy to a creature I did not recognize.
This transformation reminded me of something but I wasn’t sure what. Eventually I figured out that it reminded me of me! But me when PMS attacks. All you male readers who hate hearing about things like PMS, may want to skip ahead a bit.
Before my family and I left on the trip to visit these amazing kids, I was trying to get things crossed off my to-do-before-I-leave list. As everything I attempted to complete didn’t get completed and were doing me in in their own frustrating way, I suddenly underwent an insidious transformation.
I could feel this ugly scary black cloud envelope me and I began to stomp around my home growling these guttural growls and shooting daggers at anything in my path. My landlord needed to stop by and when I answered the door he must have been frightened by the creature I had become. He backed away from the door saying the thing in the house he needed to check could be checked later and ran to his car.
“Wow, that’s screwed up,” I barked to no one, “why the hell did he come over in the first place??”
Sure enough, six days earlier than expected, my cycle started that evening.
Ok, so PMS can turn me into something scary but who knows what that something is…..
After a plane ride with my mom and sister to the state where the youngest members of our family lived, the transformation happened again. Two days after the arrival, the exhaustion from the long day of flying and headaches from all the noise, overwhelmed me. Then, landscapers showed up to work on the property we were staying at, complete with their machines and loud motors.
Next, somebody ticked me off and (and there was definitely no PMS about it,) the black cloud showed up with a vengeneance. I turned mean and scary, and my family and residents of the neighborhood began to run screaming from me as I approached.
Insane mood swings can be considered a part of MS, so I have been told. What is this blackness born of frustration, aches, and pain? What does it turn us MS’ers into? Where does it come from?
Since it is MS, it is probably unlikely that it will get figured out. But as my young great nephew can turn from cute and cuddly into a monster child in two seconds flat, I realized so can I. Whether it is PMS or MS (put them both together and I can probably take on Godzilla), 99.9 of the time I am still cute and cuddly.
Thus, I now understand why the FB group is called Friends against the MonSter. The monster is our cute and cuddly selves under the influence of the insidious demon that is MS. Or, PMS. Or maybe like my nephew, our stubbornness at getting a diaper change when we are clearly not in the mood for a diaper change….
Post Scripts to this post–
1. There are actually several great FB groups I belong to that can help people with MS have a forum to discuss living with chronic illness. The above mentioned is only one of them that I used for this blog because of the great name although it is also a great page. Please contact me if you would like more information about this group or others- [email protected]
2. While all of the above is/was true, and this blog needed to be written, this was also a place where I could get away with showcasing pictures of some of my nephews. The first picture is Drew during one Halloween and the others are his firstborn.
3. While I truly hope my blogs are helping others and that is my main and only goal, I still wouldn’t mind a WEGO award! Here is how to nominate me if you think I should be considered.
4. Thank you all!