5 Not-So-Obvious Challenges for a Young Stroke Survivor

In most cases, being a survivor is better than being a victim, but arguably, not in this case. The immense pain and unrelenting heartache of a stroke lies in its aftermath, not in the injury itself. One goes through so many unbelievable challenges, large and small, as a result of having a stroke.
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In most cases, being a survivor is better than being a victim, but arguably, not in this case. The immense pain and unrelenting heartache of a stroke lies in its aftermath, not in the injury itself. One goes through so many unbelievable challenges, large and small, as a result of having a stroke. These are a few of the obstacles that have slowly and painfully chipped away at my soul for the last few years and have left me hopelessly grasping at the only few strands left of my former life. I've left off my more obvious personal challenges, such as the total loss of my academic career and my romantic life, but I wanted to share some of the seemingly small problems that actually have massive (and sometimes funny) consequences.

1. Literally and figuratively becoming Caucasian -- This is more of an odd and ironic series of three developments, rather than a difficult experience. Firstly, I'm literally fading from a chestnut brown to a sickly, pale yellow. I used to be pretty active -- going for jogs outside or playing tennis in the blazing hot sun. But now, I'm definitely inactive and rarely outside. It's like I'm going from a rich caramel macchiato to a watered-down vanilla latte!

Secondly, I can't handle strong spices and flavors anymore -- that means no more alcohol, coffee, or spicy food. Every single, rich Indian dish that I've grown up on everyday for 23 years is based on strong spices and flavors. I can barely swallow even just a bite of Indian food, unless it is completely bland, flavorless, and probably not even considered to be Indian food anymore.

Lastly, and most shamefully, I now, wait for it, eat meat. I've spent most of my life being an obedient, little Hindu -- a pacifistic and devout Mahatma Gandhi enthusiast. I had kind of prided myself on being a vegetarian, not only for religious reasons but also for moral principles. I was even in a Facebook group called, "Vegetarian is spelled P-I-M-P." But now, since I have to re-build all of my muscles, I have to consume an inordinate amount of the prime metabolite of muscles: protein. Which foods contain an inordinate amount of protein? Meat. Thankfully, I've been able to stay far away from beef (holy cow and all), and I dislike the extremely overrated taste and consistency of chicken, so I will eagerly escape back to vegetarianism as soon as possible. But, for now, I must be a bit of a lousy traitor to my fellow pacifists.

2. Getting a new set of wheels -- Wheelchairs are the new and terrible necessary evils that have forced their way into my life. The stigma associated with wheelchairs exists for a reason -- they are ugly, wretched, massive hunks of metal that ensure I'm suffocated by stares of curiosity and glares of ignorance everywhere I go. Being confined to a wheelchair automatically makes me feel not only physically shorter than everyone else, but also mentally shorter and smaller than everyone else. I used to live in short skirts and dresses, cool and confident in my own skin. Because of my petite stature, I was always used to being a few inches below everyone's line of sight. But now, I'm permanently a few FEET below everyone's line of sight, and you know what they say, "Out of sight, out of mind." Needless to say, I tend to be forgotten in group conversations -- my tiny voice isn't able to travel up a few feet and capture the attention of people busy in conversation. I guess the wheelchair has the power to make me look AND feel like a second class citizen.

3. Becoming a medical rarity -- I used to be one hell of a motivated little firecracker. I knew what I wanted and how to achieve it. Because of the rare location of my stroke (the brain stem) and my young age (23), I can count on one hand how many people I've found online with a similar situation to me. But the amount of people I've found with the SAME situation as me -- arterial dissection, pontine stroke, locked-in syndrome, young age, bilateral affliction -- ZERO. No doctor or therapist can tell me anything definitive about my diagnosis or prognosis. Do you know how frustrating and infuriating that is? Stroke research mainly focuses on an older target population, and centers on the more traditional cerebral (brain) strokes. I have no real example to look to for guidance, no idea which exercises will help me and which ones won't, and no clue what level of recovery I should be aiming for. My life has been reduced to a hopeless mess of trial and error. Reading online everywhere that I should have died back in the hospital is NOT too encouraging either, as you can imagine. Without direction or proper goals, and simply fumbling around in the dark, how am I supposed to maintain my once insatiable drive towards my future?

4. Letting go of my freedom -- It's the most embarrassing, soul-crushing, life-destroying aspect of all of this -- losing my independence. Ask yourself, what is life without your independence, especially when you are still in your prime? I used to embrace my freedom like any other pre-professional by going away to college, living in my own apartment, traveling the world, and carving out my own niche in the medical world. Now, I live with my parents again, and I haven't driven a car, gone out with my friends, or gotten ready by myself in over five years. People place unnecessary emphasis on one's legs and being able to walk; however, one's autonomy lies in the hands, not in the legs. Because of the weakness in my entire body, especially in my hands and fingers, I can't do anything by myself. Something as simple as opening a door or turning on a light is completely out of the question. Putting on my clothes or taking a shower, usually singular activities, are pretty much impossible by myself. If I get cold at night, I would have to wake up my mom or dad to pull up my blanket for me. I'm less independent than a 1-year-old. You give up every last piece of your pride and dignity when you unwillingly hand over the reins to your own body and life.

5. Becoming unable to spit game, or express myself -- My voice held my biggest asset, the one thing that defined me -- my personality. Within it, you could find all of my secrets and treasures, as well as my stories and silences. It was the sole vessel to channel my identity -- my charm, my wit, and my intellect. Now, that is all completely lost in translation. I barely have a faint, choppy echo of a voice -- one that I'm too embarrassed to use more than is absolutely necessary. Because my voice is slow and constantly interrupted by my need to take in more air, the personal connections I made with people that I used to gain through pleasant conversation and witty banter, are pretty much nonexistent. All that is left is my awful, monotonous voice, devoid of any variations in intonation or inflection, frustratingly unchanging with my various moods and emotions. I'm now seen as a shy introvert rather than a vibrant, fun extrovert.

Each of these new challenges I now face are associated with not only the several changes consuming my post-stroke life, but also the many losses to my pre-stroke identity. Without countless pieces of my identity -- my choice of food and fashion, my confidence and self-proclaimed swag, my pride and personality -- is that girl I once knew slowly, fading away?

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