Diseases that don’t kill

We have mostly known life by two shades, it has always been bi-everything: Good or Bad, White or Black, Success or failure and the list goes long.

But, today let’s for once focus on something that’s worse than being on lowest end of the spectrum, its being 'mediocre'.You are neither winning nor losing, you are basically oscillating within a small range that can be marked safely as mediocrity.

As for different diseases people deal with, some are visibly sick, maybe dying and a handful have only consumed medicines to battle cough and cold or for some seasonal attacks but then there are some of us, who swallow pills day in and out, that are critical for their life and well-being, they seem perfectly okay, healthy, happy but they are fighting, for everything that they do, for everything they wish to achieve, for every day that they want to survive normally in peace.

I am yet to know all the types but for now I want to talk about the one I am battling for more than a decade now. Juvenile Myoclinic Epilepsy.

NOTE: All those judgmental hats are now welcome, please take a deep breath and read ahead, you will get enough content for your insensitivity, sarcasm and judgments.

The first time the symptoms showed, I had my parents behaving like as if I was dying. My mother was crying and saying in iteration, “Why my daughter? What am I to say to people?” followed by a caution, “You cannot tell this to anybody or they might look down at you.” All of 14, the child in me failed to understand what had just happened but it was only a matter of time.

For you, my dear readers, Juvenile Myoclinic Epilepsy is a disease that lasts a lifetime and has the following symptoms:
• The hallmark characteristics of juvenile myoclonic epilepsy are the presence of myoclonic jerks that occur on awakening from sleep either in the morning or from a nap. They are typically described as shock-like, irregular and arrhythmic movements of both arms. Sometimes these movements are restricted only to the fingers making the patient or individual look clumsy or prone to dropping things.
• The most concerning aspect of juvenile myoclonic epilepsy is the presence of a condition known as myoclonic status epilepticus. This occurs primarily when an individual awakens and has multiple myoclonic seizures that do not readily stop. It is precipitated by sleep deprivation or missing medications.
• All seizures, especially the myoclonic jerks, occur within 30 minutes to an hour of awakening.
• The most common triggers are lack of sleep and too much stress. Flickering lights can also trigger seizures for some people. It might happen while watching TV, playing video games, or being outside as light flickers through trees or off waves or snow. Common precipitating factors include mental stress, emotion, and in particular excitement or frustration

Ref:  http://www.webmd.com/epilepsy/guide/what-is-juvenile-myoclonic-epilepsy

To break this down for you: When you see a patient, you will feel like this person has just received a strong electric shock. What entails within is also similar. The brain goes blank, it’s sometimes painful, leaves you tired out of nowhere and you will take some time to recuperate the shock and return back to your normalcy.

So, let’s see, how it is for a person who has been battling this for over a decade.
To begin with, the drugs used to treat this has a massive side effect: Weight gain, hair loss, liver problems and to top it I am a girl and was initially treated with a drug that is not meant for women: ‘Valproate’. Thanks to that I developed PCOD. Another common but quite painful disorder to have: Polycystic Ovarian Disease is a condition where the ovaries become bulky and out of shape because of the presence of multiple cysts within.(Cyst is a small growth that forms in the body)

The Result? An abnormal menstrual cycle. It can manifest in different forms, for me, I bled for 17-18 days at stretch, the pain and cramps – demonic, the blood flow so high, I wondered if I really have this much of it inside. All this coupled with my old friend, who becomes very active under such stressful circumstances. The electric shocks, my epilepsy.

For now, I live with 9 pills a day – 2 in the morning and 7 at night. This is to tackle all of them.

Yet, I wake up on the most of the days with jerks, which restricts my working capacity, delays my entire schedule, sometimes I end up dropping things, breaking stuff, they are sometimes flung in the air, worse are the days I hurt myself, like dropping the tea/coffee on myself, scratching, getting hurt by banging here and there, so on and so forth.

All these would have been more bearable if not for the society we live in. They will present you with stigma, shame, sarcastic remarks and label you as they can. You are told that you are not ‘normal’ like the others, your parents tell you this, people in your life tell you this, your relationships are burdened, you struggle one day at a time, every day that you wake up to.  

Now, imagine what food you have left for your soul.

If I still have you till here, my plea to you is that you become more compassionate as a person. You be kinder to your colleagues. You create a healthy, happy workplace. You can ask or offer help when the need arises. You don’t call on your friend with a special condition/disability and crack jokes like “Aaj dawai nahi li kya”, that you don’t call them diseased, that you treat them with a little more love, as people like them struggle a bit more to have what you get so naturally. For me, it would be waking up normally after a nap or not being scared of becoming all shivery after a hard day’s work or a late night party.

I am an aspiring entrepreneur, I love pushing my limits, I have grown a thicker skin with time but the truth is I am not the only one, we are a huge bunch and not all can deal with these so well. Many succumb to circumstances, accept the abuses and live a life of misery.

To them, “Fight like this is your last”.
To you, “A little compassion never hurts”.


2 Comments Add yours

  1. Raj Walia says:

    One of your readers is a friend. Tell him what it is you need, whatever it may be, whenever it may be. He can try to help.

    1. creepycouch says:

      That friend can become more compassionate towards everyone. Thanks !

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