I recently described my depressed feelings about the realities of living with MS by comparing it to an airplane. An airplane that has lost power to all but one engine. Everyone around keeps telling me to fight. Keep pulling up on that flight stick. The harder I fight, the longer I will be able to stay airborne. The problem here is that I know the crash is inevitable. Yes, it’s true that if I keep fighting the stick, I may be able to stay in the air longer, but I’m struggling the entire time. It’s hard to explain to someone that has never faced something like MS that, sometimes, it feels like I’m just staying airborne simply so those around me don’t have to say goodbye, yet. Sometimes, not all the time, but sometimes, I just feel like letting go of the stick, walking back to the passenger area, grabbing a stiff drink from the cart, and sitting down to enjoy the in-flight movie until the ground forces an intermission which is open ended.
I’ll try to explain why I feel that way.
I’ve always found it very odd when people say, “Well, I’m happy he can finally rest, now. His pain is over.” about someone who has passed after a long fight with a disease. Where was that selfless desire for the person’s rest before death? How many people would be selfless enough to let someone they love check out under their own terms? I don’t know how well I would do with that situation. You see, it’s a bit of a dichotomy for me. If MS gets so bad that my quality of life is complete shit, I would want those who care for me to let me go, if I wanted to. Still, I don’t know how well I would do on the other side of that. Having MS and all that comes with it, (The uncomfortable conversations about symptoms with friends. The numbness. The vertigo. The mood swings. The cost of treatment. The depression. Etc…..) has given me the opportunity to approach the situation with a view from both sides of the argument……….and I still don’t have a definitive answer.
That’s really fucked up, right? You would think that someone in my position would have a definite opinion, wouldn’t you. Yet, here I sit (because my arthritic ankle with the displaced bone is screaming at me, due to the drop in the mercury.), still no closer to having an answer to end the debate, at the very least, in my own mind.
Back to my airplane analogy: Because of the constant possibility of things going wrong onboard, all seats and tray tables must stay in their upright positions, the seatbelt light will stay lit, and all electronics must be stored at all times. In other words, when one has MS, one never gets to relax. Things might fall off of the plane at any moment. You don’t always know if it is the MS or something else, either. You’ve been in the air a long time. Shit gets old and falls off. The thing is, it’s difficult to distinguish between simply getting old guy (or gal. #metoo) aches and pains, and MS based issues. With the way MS attacks, (random areas, random effects, random day to day……I’m saying it’s unpredictable. Hence the Multiple part of MS.) weeding out the correct cause of a symptom is almost impossible for the layman…….which is any of us who don’t have a neurological degree. Each time something new pops up, you have to get on the radio and talk to the experts on the ground.
Now, the experts on the ground have their hands tied as well, to a point. MS is so very un-understood (I know it isn’t a word. Sue me. Misunderstood doesn’t really fit.) they can’t always tell you why something isn’t working. Heck, with some of the stories I’ve heard involving symptoms that lasted years before diagnosis, they sometimes can’t even tell if the plane has Mechanical Suckery (see what I did there. MS) at all. Meanwhile, stuff is falling off of your plane as they try to help you by telling you to put some common duct tape on it, try to relax (Already went over that not happening in the text above.), and to take a DMT (disease modifying treatment). So really, you aren’t fighting to fix the plane. You aren’t even really fighting to keep the plane in the air. As patients of MS treatments, we are really just throwing other fix-its for other planes at the problems our plane is having, even if the fix-it originally had nothing to do with MS. Many of the MS DMTs were not originally intended for use agains our disease. It seems they simply somehow noticed that said fix-it happened to have an effect on MS. So we try it, and see what happens, never releasing the grip on the flight stick while we attempt repairs.
I just keep pulling up on the flight stick. It’s all I can do.
Alright. Well, I’m weaving in and out of my Airplane comparison almost as often as Kevin Costner when he tries any accent other than his own on screen. That may mean I should stop writing. I hope it made a little sense. And I hope you all have a wonderful Christmas, Kwanza, Hanukkah, or whatever you celebrate this time of year!
Until next time,
Peace, Love, and Ketchup on scrambled eggs!