President’s Story

Drink till you get drunk, Tie your left shoelace to the right one, And try to walk, how would it feel? I always feel the same while I walk. I was 19 and was giving the 12th-grade last paper. My hand didn’t move. That time I blamed it to exam anxiety. After that, it became hard for me to write even in class. It was hard to write a word or an alphabet. I couldn’t sign. Similarly, I started finding it hard to walk. I couldn’t walk in open slipper, couldn’t hold it. People used to comment on it. It used to be hard as my legs collide each other while I walk. One day one of my friends said “Banita you walk like a robot”, that time I realized my hands didn’t swing. Similarly, it was hard for me to balance my body. I couldn’t balance my body in the shower, I needed support. I couldn’t stand, I used to go backward and fall. I visited different doctors but they could diagnose nothing. I even went to MATA JHAKRI PITRI. I never believed in these superstitions. But I was in such a situation that I needed to believe. People used to say I was nervous, why are you afraid? Why are you shivering? Increase your confidence level. Its anxiety, its depression. You lack confidence, how would you live this way? I used to try but I could do nothing, it was not in my hands. Meanwhile, I got married. These things became worst. The thing became harder. One time I was in a marriage reception of a cousin, I lost my balance and fell, people, gathered and asked what happened. I didn’t have any answer, I was unaware of what was happening. I was nervous and started having tremors. I couldn’t stand, two people, carried me to a seat. I saw the bride was standing infront of me and I was seated in her seat. That was very embarrassing, I cried whole night. After that, I went to India. I was diagnosed with Parkinson’s disease there. That time I was unaware of Parkinson’s. I was so happy to finally get diagnosed and thought I will be fine after having medicine. But it didn’t happen, I was happy a minute back and was crying afterward when the doctor described what is Parkinsons? I was so sad. Parkinson’s is a neuro-related diseased caused because of a lack of dopamine. It’s an old age disease. But I started having symptoms at the age of 19 and I was 26 when diagnosed. It’s a progressive disease that has no cure. Treatment only, and medicines are supposed to take in higher doses depending upon the progression. And certain time may come when medicines stop working and I might be bed ridden. But I was a bit fine after having medicines. I was 60% fine. I came back to Nepal, it was quite a time I was married. People were expecting me to get pregnant and have children. But I couldn’t conceive. That time I was so scared. I was already chronically ill and now not being able to be pregnant, society won’t accept me. Since it was an old age disease, nobody in Nepal has given birth to a child while having those medicines. There was no record and no one to ask to. We asked the doctor in India. The doctor had prescribed me three medicines and she asked me to stop one of them for a month. Finally, I could get pregnant. I had a baby son, and he is fine. After that, I started having tensions about my career. All of my friends have started working and I was fighting with my health. I didn’t even have guts to go out and work. I came to know whats going in the world about parkinsons. There were support groups and organizations. But nothing as such in Nepal. When I searched on google, I could find nothing about parkinsons in Nepal. That time I thought I should start something. But I had no choice, I couldn’t go out and do anything. I wrote an article, my first article in Kathmandu post. I hoped people would read my article and come for support. But nothing like that happens. But after 2-3 years one doctor messaged me on facebook. We met and we organized a first Parkinson’s awareness program in Nepal. That was a very proudful moment for me. My friends were doing a job but I had initiated something. I was happy. Slowly I started doing other awareness works. I gave awareness classes in school and colleges. With that my confidence level increased. I have also prescribed medicine for anxiety. I gave awareness class to traffic police as we find it hard to walk in the road. I also went east to west ride for parkinson’s awareness. And recently made a documentary including Madan Krishna Shrestha in it. I initiated the documentary. People always suggested me not to share sad stories. Even my family members asked me not to share my stories. I always had a fire in me, I always asked: “why me”. I was 19, why this old age disease. Not only that, I want to tell my surrounding that I was not depressed. It was not because of anxiety. I was not nervous. Rather I had Parkinson’s. I want to tell people that I suffered from this old age disease in my childhood. That’s why I share my story and do awareness related works. Being a Nepali woman, it was not easy to declare about my disease. I was pressured by my family. But if someone goes through the same stage as me atleast I will be there for them and my organization would support them. I recently registered an organization named Parkinson’s Nepal. I want to make this organization so strong that if someone goes through the same as me for a career, at least my organization would support them. I have parkinson’s, parkinson’s don’t have me. I have to live with parkinson’s there is no cure. If a cure is there then the thing would be different. Otherwise, I have to live with Parkinson’s, I can’t take it as an enemy. I don’t say I will help parkinson’s patient through my organization coz I am myself helpless. But what I can really do is raise awareness about parkinson’s so that if someone says I have parkinson’s they would not face a question “what is parkinson’s”

त्यस दिन १२ क्लास को जाच दिदै थिए, पेन सार्न सकिन, हात कडा भयो, अक्षर बनेन। जसो तसो जाच भने दिये, पास पनि भये

जब ब्याचेलर जोइन गरे, प्रत्यक जाच मा त्यस्तै हुन थाल्यो

हुँदा हुँदा क्लास मा नै लेख्न गार्हो हुन थाल्यो

जाच मा क्योस्चन पेपर हेर्यो सबै आउछ, तर लेख्न सक्दिन थिए

एउटा हात ले आर्को हात धकेल्दै लेख्दा सबै उत्तर लेख्न भ्याउदिन थिए

आफुलाई त्यस्तो स्थिती मा देख्दा आफ्नै माया लाग्थ्यो

घरमा पुगेर कती रुन्थे, म पढाई छोड्दिन्छु भनेर

जसो तसो मास्टर्स सके

लेख्न मात्र होइन मलाई हिंड्न नी गार्हो हुन थालेको थियो

चप्पल लगाउन गार्हो हुन्थ्यो

खुट्टा मै बाध्ने खाल्को जुत्ता लगाउन पर्थ्यो

एक दिन एउटा साथीले बनिता तिमी रोबाट जस्तो हिडिराछौ भन्यो

त्यस दिन देखी थाहा पाये मेरो हात हरु हिड्दा स्विङ हुन छोडेको रहेछ

हिंड्न लाग्द आफ्नै दुइटा खुट्टा ठोकिएर हिंड्न गार्हो हुन्थ्यो

नुहाउन लाग्द उभिनै गार्हो हुने

आडेश लगाउन पर्ने

प्यान्ट लगाउदा बसेर लगाउनु पर्ने

मिन्स भएको बेला प्याड फेर्न निकै गार्हो हुने, उभिदा पछाडि पछाडि सरेर लड्न खोज्ने भयो

त्यस्पछी यो डाक्टर, त्यो डाक्टर, झाक्री, माता सबैकोमा गये, कसैले केही पत्ता लगाएन

खर्च मात्र भयो

एउटा बिहे को पार्टी मा गएको थिए …………….

कती डराको?, के गरी लेखेको?, के गरी हिंडेको ?, मेडिटेसन गर , योगा गर, के के हो के के मान्छे का सजेसन

डराउन कस्लाई मन लाग्छ ? काम्न कस्लाई मन लाग्छ ? राम्रो लेख्न कस्लाई मन लाग्दैन ? आँफैले गरेर मनोबल बड्ने भये कस्लाई गर्न मन लाग्दैन थियो ? मान्छेका सजेसन ले वाक्क दिक्क भाईसकेको थिए

अब नेपाल मा केही नहुने जस्तो देखेर ईन्डिया गये

डाक्टर ले पार्कइन्सन्स भनेर पत्ता लगाये


जे जसो भये नी मैले केही हद सम्म सजिलो हुने औसदी पाएको थिए

सबै साथी हरु जागिर खान थालेका थिए

म भने आफ्नो स्वास्थ्य सँग लड्दै ठीक्क थियो

म मा जागिर खाने आट नै थिएन

म आँफै बिरामी छु, म अरु बिरामी हरुलाई खासै केही गर्न सक्दिन । मैले गर्न सक्ने भनेको जती सक्यो पार्कइन्सन्स को बारेमा जनचेतना बढाउने हो ताकी कसैले मलाई पार्कइन्सन्स छ् भनिहले , उस्ले के हो पार्कइन्सन्स भन्ने प्रश्न को सामना गर्न नपरोस ।

सजिलो थिएन मैले मेरो रोग को बारेमा यसरी खुलेर भन्न, घर परिवार बाट पनि दु:ख को कुरा किन भन्छेस बाहिर ? कसैले केही गर्ने होइन भन्नुहुन्थ्यो । तर म भित्र एउटा आगो थियो, म त्यती सानो उमेर देखी बुढेस्काल मा लाग्ने रोग सँग लडिरहेको थिए

किन म ? भन्ने प्रश्न ले मलाई सधैं पिरोल्थ्यो

म मेरा भोगाइहरु किन लुकाउ ? मैले केही गल्ती गरेर रोग लागेको होइन । रोग सबैलाई लाग्न सक्छ । कम से कम मैले बोले भने । फेरी म जस्तै अरु कोही यस्तै परिस्थिती बाट गुज्रिये , उजस्तै म पनि छु भन्ने ठुक्क हुन सक्छ । उस्ले साथी पाउने छ। उस्ले म मात्र एक्लो होइन भन्ने महसुस गर्ने छ र आशा छ उस्लाई पार्कइन्सन्स नेपाल ले साथ र साहारा दिन सक्ने छ