Mouths Open, Mouths Close: Part I

…all the time. I know they do. They do it too much. That’s what this essay is about. Mouths!

I will tell you a lot of things that I have heard from people around me all my life. In order for it to be interesting and still communicate the essence of what a person like me with my kind of two dozen symptoms has to deal with, please note that I am not trying to belittle these mouths. I am trying to convey to you in a not-so-boring manner about things a person like me has to hear and bear from others. Sometimes, it’s “just another day, just another mouth” moment for me. But at times, it irritates me too much especially when I hear the same thing so many times that I would rather not hear anything at all in my life.

Things not to say to someone living with migraine

Now that you know the purpose of this essay, let’s begin with enthusiasm which might have been missing in all the previous essays I shared.

"Wait, Hitesh! Aren’t you speculating just like the mouths you are about to open for me?"

Oh, yes. About the missing enthusiasm part, of course, I am speculating. I don’t know how well you read and digested the earlier essays and poems and enjoyed them as well.

I believe in entertainment even when I am about to lose my mind to all the symptoms.

Let’s begin already…

This is what we will do. Treat this like a game with 3 options for you to choose from:
A. My reply,
B. Polite reply, and
C. Rude reply.

Your part in the game comes from choosing which option you would opt for if you were in my place. I will inform you about the scoring system at the end. Soon, you will find out what your score reveals.

Let’s play.

Disclaimer: Before you play, please let me tell you that this is not for the souls who get offended easily. That’s right. In the "Rude reply", I will go overboard in saying things which are downright rude. So, if you get offended by reading these parts in the following pages, please skip this essay. This essay is meant for people who are impaired like me but still like to have fun. So, if you like to have fun, please go ahead, or else skip. Wow! This seems to be a part of the game. Well, it’s a tale of caution, Hitesh. How can this be a part of the game?

Let the games begin!

So, we commence…

Statement 1: "At your age, people don’t get tired even after running for an hour."

A. My reply: "Oh!" (I am trying to process this fact thrown at me out of the blue. Brain fog makes answering unexpected questions impossible for me.)
B. Polite reply: "True. I guess it’s in my head."
C. Rude reply: "I am sorry. I will try to do my best and start running for an hour and make sure I won’t get tired. I will further make sure that I make you run alongside me just to see if you can walk the talk since you are not much older than me. I am 30, you are 40. We will become running buddies. And since you won’t believe the real reason for my fatigue, I will help you out with transferring my condition to someone my age or younger just to make you see how it affects him. Forget about running for an hour, walking for a few minutes will be something he won’t be willing to do. Oh, I guess you believe each person on earth is one and the same. No doubt about it. Really? Let’s find out. Will you be my test subject?"

Dear Reader, which option will you go for? A, B, or C?

Statement 2: "How much will you rest?"

A. My reply: "As and when I need."
B. Polite reply: "Oh, am I going overboard? Sorry?!"
C. Rude reply: "As if it’s my hobby. As if it’s a personal chore. As if I have a choice to make. As if I am being lazy. As if I eat processed food all day long and hence need to rest my intoxicated body. As if I was born to rest. As if I have nothing better to do. As if I am a carnivore like a lion who eats only meat and needs to rest most of the time since the digestion of meat makes me lethargic. As if it’s possible to rest this much without getting sleep. Who in their right mind would rest multiple times rather than play or have some fun activity?"

Dear Reader, which option will you go for? A, B, or C?

Statement 3: "You should learn how to compromise."

A. My reply: Silence (courtesy of brain fog and also trying to not pick up a fight)
B. Polite reply: "Yes, I will learn and act accordingly."
C. Rude reply: "You mean to say that I should suffer more just because you want me to. I need to follow your directions laid out for me so succinctly and with love that I should explode with shame and ingratitude. Yes, where is the gratitude spirit in me that I am blessed with your attention and still have an uncompromising attitude? Shame on me for being so selfish as to think only of myself in trying to not have a flare-up!"

Dear Reader, which option will you go for? A, B, or C?

Statement 4: "If only you were to pray to god…"

A. My reply: "I don’t wish to get into such discussions."
B. Polite reply: "Yes, most definitely. Please let me know what to do. I will follow you."
C. Rude reply: "If only you were to learn to differentiate between supernatural and natural, and not mistake fiction for non-fiction. If your prayers to some kind of god help with all the problems in your life, then why do you keep praying all your life? Why aren’t you happy all the time? Why do you bow down to the insecurities and tend to them with a horrible lifestyle — one definitely filled with processed food and your god only knows what else? Why resort to supernatural thoughts as if you are incapable of dealing with natural things around you? Is flying high in the supernatural realm required in order to keep breathing? Let fairy tales be fairy tales, not turn my life upside down. If belief in god helps you, it’s a great thing. It doesn’t help me."

Dear Reader, which option will you go for? A, B, or C?

Statement 5: "You need to go out and interact with society."

A. My reply: Keeping mum (trying not to argue since I am not capable of arguing unlike my well wishers.)
B. Polite reply: "Yes, I will try to be more interactive."
C. Rude reply: "And get a flare-up? No, thanks. Triggers, triggers, triggers — everywhere. Yes, there are. And experience says people are the biggest triggers of them all. If I let them, I will go crazy with the increase in the frequency and intensity of all the symptoms. Why so? Because people expect me to not take care of my triggers. They may say otherwise. But then, their actions and eventually, their words say otherwise. That’s why I say it doesn’t matter. They expect me to behave as per their liking and expect me to not get affected. But they need to know that my nervous system doesn’t quite work according to their expectations. Even I don’t have much control apart from some preventive measures I take. And people baulk at those preventive measures referring to them as anti-social and several other things which will take a book in itself to let you know. No kidding!"

Dear Reader, which option will you go for? A, B, or C?

Statement 6: "You have a responsibility towards society."

A. My reply: "Okay."
B. Polite reply: "Of course, I will make sure I contribute to society by helping others out by asking them what I can do for many people around me."
C. Rude reply: "Yes, I need to allow them to debate with me about my sickness, something with which they have zero experience. When I am unable to do anything in life properly most of the time, how am I supposed to take time out from my little time and help others? I am unable to help myself. I am somehow surviving — unable to do a job which pays a high salary or some traditional business which will make me rich. If I can’t even pay my bills, how am I supposed to help others? First, please ask them if they are okay with accepting help from someone who is incapable of helping with most things. If I come across as sloppy, careless, lazy, dumb, or even stupid to a great degree, then how am I supposed to help others? Will they not judge me and comment on the things I am unable to do properly? They do. Will they not repeat things which don’t make sense in my case? I know for sure that they will do — some at my face and some, trying to be polite, will do so behind my back. Do you know how I know this? Three decades of experience is speaking here, not someone speculating. I leave speculation for my fiction and even that is supercharged from my personal experiences — mostly first-hand and then second-hand."

Dear Reader, which option will you go for? A, B, or C?

Statement 7: "You are young, act like one."

A. My reply: Keeping mum (as I see no point in replying to something which doesn’t make sense in my case. Most of my replies are no reply at all other than an acknowledgement that I heard the person. Now, should I call this person Monsieur Sensible? I don’t know. I can since he’s not making sense in this case, in my case. And I definitely can if he knows about my condition and understands even a tiny bit of my limitations.)
B. Polite reply: "Yes, I should act like one and I will from now on."
C. Rude reply: "Yes, I love to act. I am so good. Still, you caught me in the act of not acting like someone who’s young. I need to work on my acting skills. This skill set is very important as in my society it’s more important to act okay than to be yourself and let others come to know about your symptoms even without you letting them know explicitly. I need to act like I am fine and display somehow my ability to do anything with flair even though I am impaired and can’t do any task properly. I fumble at even simple tasks most of the time. But I can’t let Monsieur Sensible know about this. I can’t upset him. I need to do things for him. He knows about my limitations in life, still, he expects me to do chores for him even though he’s perfectly capable of doing his own chores. You are young, so act like one, not like an old fool. I guess if acting is what will make a relationship last between us, then I would rather never try and sever the cord between us, no matter who you are and are supposed to be. It’s better this way for you, more so than for me. As you are clearly affected by my limitations in life and don’t like me to have them. You say such a thing as if I have a choice in this matter."

Dear Reader, which option will you go for? A, B, or C?

Statement 8: "No one can be this sick."

A. My reply: "Can’t say about others but I am."
B. Polite reply: "Oh, really! Maybe, I am exaggerating then. Thanks for letting me know."
C. Rude reply: "Now, why do I feel that the polite replies are tending to be more sarcastic than what I am writing under this type of reply? If a person can’t accept a fact or a straight answer, no amount of politeness will be accepted by him. He wants his own way. Now, coming to the statement, what do you mean by ‘this sick’? What do you think? The world is limited to you. If you don’t have what I have, then I must be lying. Oh, the liar I turn out to be in your beautiful eyes! I have no right to breathe, no right to share the air you breathe. Dear Monsieur Sensible, of course, you say so since you are not this sick. How can you be? If you were, you wouldn’t say such a thing, you wouldn’t belittle my life like this, you wouldn’t downplay my symptoms to a trifle, and you wouldn’t call me a downright liar. You seem to have the exact data points of the world at your fingertips. You speak your mind as if you have taken a second to compare my illness with the billions of people out there. My goodness! You must be one of those gods that religious folks like to talk about."

Dear Reader, which option will you go for? A, B, or C?

Statement 9: "There is medicine for everything."

A. My reply: "Of course, there is. After all, it’s the best business out there." (Perhaps, I won’t say such a thing in the heat of the moment, courtesy of the brain fog obviously.)
B. Polite reply: "Oh, yes. Absolutely, if you say so."
C. Rude reply: "Then, you shouldn’t be speaking this way. Isn’t there a medicine to cure one who utters nonsense with zero experience in dealing with what I am going through? I bet there must be since you are such a strong proponent of medicines. Tell me this. What do medicines do? They are after all toxins. They ruin your mind and body. So, how can they help? I don’t know a person who got real help from medicines. That’s why they are often referred to as placebos. Because that’s what they are good for. That’s what their real work in our bodies is. They won’t cure. They don’t help. They only harm us in varied ways. If someone can’t tolerate a symptom and goes for drugs to tame the sensations for a while, it’s his thing. If he’s okay with it, then fine. His body, his call. I don’t have the right to judge such people. I was one of them till the age of 28 after which I decided that I wouldn’t numb my senses, rather I would get healthier, and go for healthier options in all aspects of life. I am glad to have followed this path to an extent and come a long way. I have a long way to go further as I am still not there. I do succumb to bad lifestyle choices on a daily basis but not as much as people around me, my so-called well-wishers saying such wonderful things to me, reminding me of the kind of cripple I am. Because I keep fighting the urges and I love myself for being so obtuse."

(Goodness me, the sarcasm needs to stop! But then, we won’t have so much fun that we are distracted from our symptoms for the time being. Let’s go overboard and have loads of fun. At whose expense? Nobody, I guess. It’s just us having fun by having fun. That’s it. If having fun like this helps distract you from the symptoms you have just like it is helping me to get distracted, then isn’t it worth it? I dare you to tell me it’s not!)

Dear Reader, which option will you go for? A, B, or C?

In part two of this essay, I will share 10 more examples.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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