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ONE LIFE WITH MOTOR NEURON-মোটর নিউরনের সাথে এক জীবন
In 2018, the most, may be, ominous event in my life had been ensued, though I ponder that as an amenity now, when I was 20 years old earnest young man studying, second year, BS engineering in a public university of Bangladesh with double government scholarships from secondary and higher secondary. Life was pretty enjoyable as a callow at new city of Dhaka, Capital of Bangladesh, with a lot of new friends .Though I felt a little bit solitude and unaccompanied as a was living far from my family , but it was not very rudimentary matter for me cause I was passing my last 13 years far from my family for studying matter.
My family used to live in a poor village at Chandpur, A district of Chittagong division, with my younger sister, father and mother. As my village had no consummate opportunity to study well, Schools are so much far from my village, I had to forgo my village to another village near a good school when I was at level 5. I can still reckon that day when my mother lamented for me and my father's countenance was like a vigorous cloud in the sky, though I did not cared that so much that time, was augmented for new place. But now, after 13 years of oafishness life, I can deem the endearment of a mother and father which cannot be chaffered with anything else. I was always keyed when to go home in my school vacation, sometimes went one or two days before and returned one or two days after the ascribed time of vacation. The last two days were so painful and stagy as I did not go to home from my playground in the whole day so that they could not return me back to my school. Rather I stayed with my best friend, still he is my best friend in this age, played with him, bathed with him, ate with him luncheon and slept with him .all these went abortive when my dad unwillingly brought me to school with lots of home made food so that I did not feel scarcity of food. Mother used to call me everyday night to hear my voice to another relative's cell phone and that made me to cry after talking to her. Everyday was like a new war day and life started to pass like the water of a plucky deluge without any quest. Suddenly I noticed I had completed my secondary and thought now could live with my family, with an extra three months adjournment, which leads to a chirping mind all days of last examinations. All got amused why I looked so garrulous instead of taciturn that broke my rudimentary habit and I was also distrusted with my new face. But when I heard my father said, "My son, you have to stay there because we don not have good college near our village and do not have enough money to send you far college." Then I understood a harsh reality that may be I could never return to my lovely home, may be as guest only.
13 years of spring of my life have been passed without my family and I am still a guest to my family with a poor soul aiming to a notorious goal of life. Mom once told, "Son, everything can not be gained at a time, life is a sacrifice of something to attain another one." That time I also saw tears on her eyes with a great proud that I got chance in entrance examination to study engineering which was her dream about me. May be a mother is being created to cry on her whole life: when child is happy-they cry, when child is not happy-they cry, when child is near – they cry, when child is far-they cry.
University starting days were enjoyable and I was trying to become extrovert as it is necessary to get a good job. Every day I used call my mother with my new phone to inform her about my daily amazing university life, used to do home study regularly, attained classes regularly ,went to restaurant with friends weekly. All were going well without, After third semester, one day very morning I was feeling weak on my hands. I thought may be from starvation or anything else which urged me not to care about that matter. But I was noticing that throughout the whole week it was increasing gradually and I felt weak with a little bit pain on my hands. I god a little bit tensed about that and the next week I went to go to a hospital, missing my theory classes and lab classes, to meet with a orthopedics doctor. After a long scrutiny, he gave me some medicines for nerve pain, muscle strength, vitamins to take one months with a restrictions neither to use mobile high time nor laptop. But these medicines were not working at all, rather I was feeling more pain inside my bones of my hands and much more weakness. Again went to the hospital, but now another department by the help of google to decide about doctor, neuromedicine, and the doctor also gave some medicines to take one month and said if not work then to go a specialized neuromedicine hospital. And finally that happened, I had to go another hospital for a better result. Meanwhile I had lost many course classes, class tests and lab because I was alone to work for me here.
When I went to that specialized hospital , I saw many peoples with different disorders and I felt like havoc. In that doctor's room, I entered with a daunting look and again doctor prescribed me some medicines by saying that may be you have handicap of vitamins and suddenly he noticed my right hand . It was surprising that I had not noticed before that the muscles of the joint of thumb and index finger of my right hand was less than my left hand. He asked me ,"Is it normal by birth or not?" "No, doctor, I did not notice it before ", I replied with an astonishing look on that place. Suddenly the doctor stood up and writing something on prescription paper with a demonical voice ,"Hurry up my son .Go to the test room and do these tests as early as you can and come to me next week first day with the reports. I am writing here special patient so that you can get early serial." Doctor's countenance made me baffled for some moment and I chased to the test room counter with a dismayed eye. The supervisor said ,"you have to wait about 20 days because these testes take too much time that is why it contains so much time to take serial." "But I am a special patient .you can see on the prescription", I told him with an intended glance. "Yes ,I saw .that is why you get by 20 days .otherwise you could get after 45 days. we have only one machine for these tests because of sparseness"
That day I came back home from hospital by walking more than four kilometers, conceiving with a fainted mind ,"is it rally happening with me? What is that rare disease that supervisor told?" Moreover, financial factor made me think so much as the cost of tests was beyond my surmise because I had not any money to me or I could say to my family in that time, received few days ago for survival cost. I did not sleep that night also cause of that pain on hands. I was thinking a famous quote of Michael L. Martin jr. : "Life goes on, as so does death."
A long days of endurance, finally I got the date of test with a home preparation like proper slack dresses though I did not know why that is necessary .The machines was not intimate to me as I had no opportunity to come hospital before for my own purpose. A saw a machine in which a long needle ,about 4 inches long, connected with a probe to the machine's circuit. I got so much angst at first look thinking of the final output of the needle and my conjecture came true. The doctor inserted the needle into my muscle ,where the muscle was decaying, and asked me to move my fingers, thumb and index, to press one with another. But with a feckless sight ,I was feeling that I could not move those finger properly to create pressure between two of them which brought a worse result. The doctor elicited the needle from the muscle and inserted that again into that place with a haphazard movement to get the pulse record on the computer screen. He asked me to try again and again but I could not do anything without starring at the display with the eyes of tears. Then he repeated that thing on my arm ,left hand, shoulder (left-right),legs and so on.
The another test took place into another room where I noticed a tool looked like mobile charger which I thought to attach into to plug of machine ,later I was proven wrong with an amazing surprise. The part was output of electric shock which were inflicted in my right and left arms, my first electric shock in my entire life, to assess my ability to conduct electric signal combining with my brain signal through nerve to hands. The first shock was apprehensible and next were just like shaking in my hand with some unnatural and paranormal matter, if I was thought as earth and that was as earthquake. However, I had done with that day with many more unbearable tests combining with the eyes of tears and the pains lasted more than one week on my whole body, mitigated with medicine.
After a week, I went to the doctor with all the tests reports early in the morning , university class test was going on that day, for getting a final decision from the doctor. And doctor told me, "we think that you are affected by MND and we could do nothing better for you, may be no one can. You are given prescription for physiotherapy and occupational therapy. Take care of yourself and do not worry." At that time I didn't have any idea about mnd and I went to the therapy room for the therapy. A women doctor asked me with a faint look, "what do you do ,son?" " "I am studying in a public university, "I replied with a confident voice. "How many siblings do you have in your family?", she again asked with inquisitiveness. "Me and my younger sister. "Will the muscle return back in my hand ?", I asked by showing my hand to her. "May be", she replied quietly. "But don't worry. Everything will be ok", she enlightened quickly.
That day also I returned home by walking with a earphone into my ears ,listening a song that explains nothing is permanent in the world : whatever happens- happens for the good. At night I searched for the MND with a melancholy mind. "Ok , that means motor neuron disease which happens when your body does not get enough signal of information from your brain which leads to an stopping proper operation of your whole body. When your specific body muscle does not get enough signal that leads to reduce the blood circular to that muscle and your whole body muscles start to be fainéant. You will not be able to move properly due to losing your muscles strength, you will not be able to eat properly, you will not be able to breath properly due to shrinking into tracheae ,infection in respiratory system and finally paralysis. All lead to ultimate fate, a death. Well, eminent scientist Stephen William Hawking, My idle, had also been affected by mnd. though he is still alive by a elite treatment. May be I will not be able to be alive, may be I will die within some years with a unfinished aim of life. Ok then, as I will die soon what should be my aim now for some years? Is it to go village and live the rest of life with family? Or is it travelling some places where I used to dream?," nattering with my mind with a abortive heart. The whole night I was awaken by thinking about my next plan which made me to feel like a free bird ,free from the irons of the civilization and allure. But I did not cry that day as I felt peace inside.
I slept the next morning up to the whole day by skipping my lab and classes and I passed one weak like that way. And next weak I joined my class without letting anyone perceive as no one should, I thought, get vexation from my death before. I concentrated on classes as like before but I could not control myself from bearing pain which leaded me to another doctor within that month, best neurologist in the city, for harkening a better result. However, my uncle noticed that I am not good and he joined with me to the doctor's chamber where I got most frustrated in my whole life's. Doctor asked if I felt weakness in my legs also though I never felt like that before. But when doctor said that same thing would happen in my whole body parts including legs, I felt like so much weak and pain in my legs surprisingly. Later I understood that it is a mental disorder which can be created from a simple negative hint from a doctor. That evening, doctor said ,"Actually, there is no proper treatment for mnd and we can not help you at all. You can go to India immediately if you wish and let me know about your condition after returning from there." Getting out from hospital, uncle said me to go India as early as possible and said money could be managed anyway though we knew money was the main obstruct. However, within two days, everyone had known about my condition including all relatives and university friends. I was at my room all the days.
Surprisingly Mom did not cry that day by calling on phone which made me, may be, to be strongest and hopeful till now. She said," Do not worry, son. Everything will be ok and you will be doing everything again properly." That day I decided," I want to live for my mother." I went for urgent passport and urgent visa as early as possible and meanwhile my university ally were excerpting dibs without letting me ken, disposed a huge amount within few days, for what I am obliged to them forever and the relatives. When I departed to the contiguous country, I was feeling like a nomad bird searching for a better place to breath and to survive, a wee in the giant universe with a subtle anticipation.
In that mammoth hospital, I found myself as a human with bare decrees like thousands of people there which alleviated my previous days sorrows. The first day doctor scrutinized my whole body parts like hands, legs, waist with a long time if there were any sign of muscle loss in other body parts and gave me several tests where I saw three homely names which made me aghast again. But then I took decision that I would see the last of everything and went for the tests. Some more tests were like blood test for searching for any virus of bacterial affect on my body, a DNA test for searching any genetical defects on my body and many more tests. It took 10 days to get my test result and I went to doctor again. After watching all report , He said," You must go to that place where I referencing and take your final decision." He referenced me to the most senior doctor of neuromedicine of that hospital and I appeared there next week. Here I got final outcome from the doctor," We think this is Hirayama disease , a type of MND which will affect only your upper part of body , mainly hands and you may lose your hand strength as well as muscles." I asked him with temperate look," why this was happening?" He replied that ,"Your body growth and your spinal cord growth ratio is not concurrent which leads a huge stress on your spine C6 & C7 without any outside affect." "How long this process last and how can I stop that?", I asked doctor for a positive reply with a last hope, though I knew everything was done. Doctor replied," Well , theoretically it will increase as many years as your bones grow and nothing can stop this .We can reduce the acceleration of the lose of strength and muscle by physiotherapy and occupational therapy. However, your left hand will be much stronger then right one as theory and as a student you will need a scribe for writing during examination. You may not eat with right hand as it will be losing strength. You should not try to lift weight more than 3-4 kg because it could increases the decay acceleration." "what if my growth can be stopped anyway by stopping the production of growth hormone and no accord between growth of spine?", I asked him. "No way, dear. Is not it better to conform with fortune and try another way better? We are sorry to say that there is no proper treatment for mnd type diseases. We are trying to find out a constructive way for the last 35 years but medical science can not reach the loquitur of nervous system. Overall I am saying that keep patience and be strong. Do not lose hope. God can do any miracle." And I returned back with 1.5 years medicines and necessary supplies which will reduce my spinal pain and therapies for muscles strength.
However, real struggles had been started when exam days were knocking at the door. I needed a scribe with all the requirements of university which was really tedious . However , with the help of ally I managed a homely scribe and finished exam with a insatiable soul. The studying days were an amazing experience with a long chair attached soft pillow on neck side and a pillow under hands. A pillow under the book to increase the height of the book so that I needed not to bend my neck and a cervical collar which was attached, still, with my neck which leaded to think like a prisoner all the days. I could not study long time continuously otherwise I felt pain on upper side of body and I used to lay most of time on bed without pillow. Then I destined to learn left hand writing so that I could write for my next exam but I noticed weakness and pain in left hand also that forced me to ruin the plan. However, the last plan was to gap 1 year from study but that also went vain as I was not sure after one year what would happen. Days were going like an erractic boat in the sea. But I did not stop. I wanted to do my best what I can. The medicines, therapies, exercises and meditation. With all weapons, I started my journey again for a life without excuse.
Now I am in three years of my damndest life and I am living life yet with self happiness. After all, here doctors theory about me was recanted like I am still writing with my own right hand instead of doctor's saying that I could never write; I can still stay on reading table for the long time instead of doctor's saying that I might not stay on reading long time continuously; I can take my food properly instead of doctor's saying that I might not be able to use my hand to eat.
I am fine, very much fine now. My family takes care me a lot and I understood the meaning of life. It is nothing much without what or whom you think on the bed of death. Small happiness can also bear the meaning of life. At least, may be, living anyway is much better than die. And, eventually, I need a checkmate move.
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