A.S. Face 0740: Satyaki

I don’t know where to start with. I’m Satyaki, I’m 24 & I’m from India. It all started back in 2008 just 2 days after my 20th birthday. till that day there is not even a single day which I’m totally pain free. I’ve been diagnosed AS 3 days back & since then I’m happy, Because at last I know what I have & how I have to live my life actively. I’ve been to many doctors in last 4.5 years but no one told me what actually happened to me. now I know it. I don’t want to share the details of my pain with all you because I know we all have this same issue which we have to live rest of our lives. I want to share how it affected my daily life.

In 2009 I finished my graduation, my professors was so kind to me they allowed me to seat in the final university examination with only 2% attendance. Those days the pain was new to my body & sometimes it felt like I’m in a middle of a hell.  & after that I had to take a year break for this savior pain & then again started further study. in 2010 I joined my post graduation program. This time the case is totally different. My attendance was down again & again in every semester. But my HOD never allowed me to seat in the semester examination. Nobody except my parents in this world believed that I’ve a pain which suffers me everyday. I’ve problem doing simple things like brushing my teeth in the morning. how can i make them feel i didn’t have any idea. BTW now I’m in the final years of my study & my semester will be soon. Hopefully this time my HOD will allow me to seat in the exam (If he knows anything about this,  otherwise he won’t). In the class also I was not regular to submit the assignments & I’m the worst boy in the class in the professors eye. I don’t know how to tell them “sir, I’ve a pain throughout my whole body which suffers me a lot each & everyday of my life, I always try my best but I cant do it all the time” why should they believe me? I tried to tell them once or twice. The answer was “Don’t try to fool us. we’ve seen lots of lazy students like you. you don’t have any thinking about your future.” This was the story inside the class. There is a same story outside the classroom with my friends. I always tried to match them physically. sometimes I succeeded but most of the times I failed. As I’m very irregular in the class not everybody even recognise me inside the classroom. still I’ve a few good friends there. But I never wanted to feel them that I’ve a pain. I always tried to react as normal as possible. Sometimes my walking style was a thing to smile between themselves, sometimes my standing posture. But I always ignored them & there is always a question in my mind, what the bloody hell happened to me, why can’t i stand normally like them, why can’t I walk normally like them? after coming to home or hostel I tried to stand in front of the mirror & tried to correct my postures, but i failed 90% of the time. My friends from my hostel always tried to prove that i’m a lazy person & i’ve some pain like grandfathers. How do i even expect that a bunch of 20-25 year old boys will understand what is happening inside my body when my HOD is not understanding it.

That was my days in the college. But I’ve a life other than college. I’m a travel freak person & love to travel around all over the India & take photos of different places. I’m also passionate in street photography since last 6-7 years. Taking photographs is something which i can’t live without. I travel whenever i get a break from my college. sometimes i can’t go anywhere even in a break because of extreme pain. I’m a great Himalayan fan & love to go there since my boyhood with my father. But after 2008 I’ve never ever in a physical condition to be there. It’s really frustrating. because of this I choose to visit other places & i love to travel alone. while traveling in the train for 2-3 days I suffer lots of pain which affects the rest of my travel a lot. I still dream of go to some treks in Himalaya. every year I plan it in a hope that i’ll overcome the pain but unfortunately It’s always with me & i’ve to cancel the plan year after year. My traveling also reduced in last 2 years because the pain was increasing everyday. this is the same case while shooting in the streets. we have a small group of 4-5 people from all ages whom love street photography & we usually take the road together not more than 3 at once. So we usually walk 8-10km a day. sometimes that feels like 100km to me. Those are the times when I really get frustrated.  Sometimes I miss some good shot because I didn’t have the pace to match with them.

Now comes family. I’ve no problem with my family. they were always believed me that i have a pain. whenever i’m home i used to be in the bed all day & night & they always allowed me to do that. I’ve a very supportive brother who supports my everything. After knowing that i’ve AS he is the most active & trying to fix a appo with a good rheumatologist. but now i know i can’t rest all day when i have extreme pain. I need to be active.

I’ve never told about my problems to anyone, what only my parents knows that I’ve pain. that’s it. I don’t wanna tell them more because my mom is a cardiac patient & that can have an effect on her health. I never told anyone because I tried to tell some people who r close to me. but no one believed anything. since then I’ve stopped telling to anyone. but now I know everyone will understand here what I’m trying to say & what I was going through since last 4.5 years.

What I always tried to do is push my limit of tolerance. I always believed that pain can’t rule my life rather I’ll rule the pain. everybody has some problems in their life. we have ours. Life is not smooth & we have to accept that. I do whatever I love to do. sometimes maybe not in the way I want but in some other ways. This planet, this nature is beautiful & I’m are thankful to God that I’m a part of it. A Sunset from top of a pick can give me the pleasure which no painkiller in this world can give me. so don’t think about what you don’t have  but always think about what you have & try to maximize it.

India


2 Responses to “A.S. Face 0740: Satyaki”

  1. Dear Satyaki,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Hey, Satyaki, I am also from India, all the best to you. One advice, I would like to give, it may seem harsh, but do not complain about the issues you have(even to yourself) instead have a mindset to do something about it and to attain it. You will find that it will become a habit and things will start becoming better. Do not get frustrated by what others comment about you, instead give it back with smile, because after all they are correct, they are one of the inspirations for you to fight back. I lived in a hostel too, and know what issues someone with AS goes through.

    I know this ‘doing part’ is a bit tricky, as to no one knows what to do or start from. I tried Water Aerobics and it helped me a lot, also I found out a very good trainer. As I started showing signs of improvement I was advised to perform weight training. Contrary to common belief among non-experts, exercising helps. I take utmost care to perform proper forms during the exercise and use correct weights. I have control on diet, and do not eat much of starchy and junk food. Now, I have good signs of remission, and jog on alternate days, compared to not being able to stand up from a chair or even rotate my neck.

    Once, again all the best for your endeavors.

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