Saturday, October 31, 2009

My 1st Experience Of 'Mobility'-

'Aseem': my 1st experience of mobility ! [me with my friends]

When you realize that you are never going to walk or sit on your own, then the 1st biggest question in front to face is how you are planning to manage all the daily chores. Secondly, if you are a student, then, some really big challenges appear in front of you. Sometimes, being born in really well-to-do family doesn’t even help you fully, though people use to say that money solves many problems. Yes, I agree that money solves many problems, but not all the problems. Having a good supportive family & friends who cheer you up to take up the challenges, make the life really beautiful! When you are sure that your family & friends are always there with you, come what may, gives lot of courage & a feeling that ‘you are not completely lonely in your struggle’.
Then, begins the role of four wheels which become inevitable part of life & take up the role of two legs which take you to desired places, but of course with some limitations.
When I accepted gradually that now four wheels are forever going to be with me, frustration gripped me that “why me? Because of whom? What was my fault to face this punishment? How to face the fact that full life you will be denied some basic things which every person wishes to have like marriage, kids, well-settled home, etc.? Just because you use wheelchai? [Though you are actually scientifically-proven a person of incurable disorder of weak brittle bones but nothing of it affects all the things which result in leading a normal life( of course, later I realized this ‘silver lining of grey cloud’ ! that I haven’t lost fully)]’. I used to quarrel with my mom & dad on this issue, stressed myself with the worry of future in the beginning. I had seen all my dreams like becoming an astronaut (like Kalpana Chawla!)/ scientist/doctor/fashion designer shatter to non mend-able pieces.
Later I realized that though I have got a rare disorder of weak brittle bones [please notice that ‘disease’ & disorder’ are totally different], I haven’t lost the battle fully, I have at least all other physical conditions on a normal level, as I got such reports from all sorts of doctors & even 1 specialist doctor comforted me when he scientifically proved that I have been a normal girl & no abnormalities are in the body except just weak bones! He just cheered me up that ‘just love the life as it is but try to focus on your fields of interest & your career, do what you really love to do, mental stress won’t affect you then anymore as things have happened already & you have these plus points too along with you. Just ignore the silly people who madly doubt your abilities & physical conditions.’
Now was my time to take up the life with full attitude, positively & cheerfully! I took up my decisions always, as much as possible. I have realized that just questioning & puzzling myself wont help, it’s better to face, let’s flow than become a pond of stale water. Now I focused [I’m still & will always be] on things like career in my passion- Painting! [Digital & manual], hoping to work as a trained & expert commercial artist. I also started to enjoy life that let’s improve the way all the things are than the futile efforts of getting rid of that disorder on false hopes. Today I’m writing about the phase which I faced with ease, but there was a time when the phase was going on & I was like in a position of ‘Abhimanyu’ who knew the way to go in but never knew how to come out of ‘Chakravyuha’ successfully. I tried to think of ways which could help me in tackling the obstacles in my way of achieving my goals. 1st of all my dad & 1 of my friend made a stand for the manual wheelchair [which used to be pushed by anyone who would be there for me- family-members, maids, friends] because I still can’t push my wheelchair myself with hands having not enough strength necessary for it]. With this detachable & portable keyboard-stand I started using computer more easily & comfortably than previous. But still, I had a feeling that something should be done to get rid of the dependency of going anywhere I want indoor and outdoor. When I had been a little kid, I had heard about the electronic wheelchairs in abroad from an acquaintance of my dad but that time, such wheelchair was a dream & we all had been living on false hopes of getting fully cured of the disorder, since I was a baby of 6 months age. Now, I really had been in need of such kind of wheelchair, I realized. But I couldn’t find a way of getting myself one of it, that too in India. I always admire the great scientist Mr. Stefen Hawkins and his wheelchair. Days were passing on, I was tackling problems with the force as much as possible.
Suddenly 1 day, my sister Kshama & I saw an ad in the advertises supplement of daily maraathi newspaper ‘Sakaal’ that a company in Bhosri [Pune] named ‘Scope’ was manufacturing electric or battery-operated wheelchairs called ‘Aseem’[one who has no boundaries]! We took up the d to dad & suddenly he said, ‘ I had too seen the same ad almost 6 months ago & taken note of the address & no. but it slipped out of mind with the passage of time to follow up’. We both sisters just kept insisting him that please let’s check it out sooner the better. So, finally when he had gone for some other work, dad found out the address & met the technicians there. They told him to bring me along once, so that they could try one of the wheelchairs they made & make suitable modifications. I was so excited to go there for the 1st time, because I had been believing that this might be the solution to my problem of mobility. I kept asking dad very curiously about ‘Scope’ & ‘Aseem’. Dad, little bit calmly, said, “it’s kind of a workshop, not a company as they advertise, they make battery-operated wheelchairs bit crudely, it’s all still going on trial basis there at ‘Scope’, cheaper than those made abroad, so that any person with disabilities can afford”. I found dad’s response bit cold. I now think he was probably making me ready for one of the biggest fiasco I was going to face soon, by giving an idea of the situations. Probably, he had got an intimation that this effort is not going to give desired fruits. Still I went there in month of May 2007. I was curious about everything there- even the industrial shed of ‘Scope’, 5-7 ready wheelchairs, the technicians working there. There we met the main technicians Mr. Paraag Karandikar & Mr. Singh, discussed with them my needs & expectations from the wheelchair like reclining seat, footrest &the part which comes under the legs combined into one piece as I can’t seat with knees fully bending 90 degrees, seat-belt for safety, rear wheels of medium size as I didn’t need the typical big ones. They agreed & told me to try one of the ready wheelchairs there for a few moments as a trial & preview of the wheelchair [though mine was going to be modified]. I was shifted into it by my mom-dad by leveling my manual trolley-like wheelchair with 1 ready ‘Aseem’. I was given a belt which was fastened. Then Mr. Singh showed me how to switch on/off, how the vertical handle-like lever was to be turned right & left to steer according to desired directions, how to adjust the speed by pushing lever forward to move the wheelchair forward & how to turn. Then he said ‘you keep your hand on the lever, I will drive it for you by walking along with you, but you will get a sensation of how to steer your own way then & thus learn. So, let’s go on your 1st ride with ‘Aseem’”. He took me in ‘Aseem’ around this way throughout the workshop. I was very excited & fully concentrated on how he drove. Then, he told me to drive the way we went & come back at the same spot where we started. I was suddenly blank out of excitement, so he showed me the functions which I had been confused. Then, I just glanced at dad, mom & even our driver-uncle was very eager to see me go on my own with ‘Aseem’. After all, they were going to see something they had never expected, that is, I going without anybody pushing wheelchair for me, a thing which had been an impossible dream turning out possible ! I just kept my hand on the lever, started driving the ‘Aseem’ using the lever, gained little speed. Mom-dad & driver-uncle who were very excited, accompanied me, just to be sure that I don’t get into any problem. I finished my round & came back to the place I started. Then I was shifted back into my own trolley-like wheelchair. Dad discussed with Mr. Karandikar & Mr. Singh about the modifications needed & the estimation of period necessary to make ‘Aseem’ ready for me. They told us to contact after some days, so that they could give it more thought on modifications. We decided to leave, Mr. Singh asked, ‘did you like ‘Aseem’? I just turned towards dad & said spontaneously what I felt at the moment I drove ‘Aseem’- “today I understood the real meaning of word ‘mobility’, that’s it !”
Later, we had to go innumerable times, almost every one & half week, sometimes every month, to the ‘Scope’ workshop at Bhosri [Pune] whenever we got a call from the technicians that ‘Aseem’ is ready, please come to try & take it home. We used to go there every time with renewed hopes that it’ll be ready at least this time, but every time, it used to be a flop-show, never properly working. One time, it suddenly started just rotating around itself, while I was seated in it! My cousin Brother who had It was horrifying experience. Next time, it didn’t turn properly. Some times, it wouldn’t just start properly. Even its manual mode was very difficult to activate. Many problems used to appear suddenly every time & I would return home, empty-handed, nervously. Technicians kept trying while some times, lazily ignored the faults or some times just answer that they were doing some other ‘Aseem’ ready for some other person. We never argued but kept waiting. Every time, they told “it’s ready you come to fetch it”, every time just one more flop-show in my hands. Once they suddenly said, “we will get your ‘Aseem’ a joystick instead of the lever, to control all the functions which will be imported from UK, but it will take more time to be fixed with ‘Aseem’”. We agreed once again same cycle repeated- going, waiting, coming back empty-handed. Finally, on 11th September 2007, I was finally told that ‘Aseem’s ready fully. I was also ready that this time too, it might be one more flop-show, but they handed us over the ‘Aseem’, along with a kit of screwdrivers it needed. We took it home, I remember every moment of travelling from Pune to my home! [But biggest flop-show was waiting for me ahead !]. Very excitedly shared great news with all my friends that I have bought a new battery-operated wheelchair from Pune & soon I’ll be in better position in case of the independency as there won’t be need of someone who should push manual wheelchair for me. Now I think, I was silly that I hurriedly shared the news in excitement & lot of joy! Soon, my joy turned into lot of disinterest towards ‘Aseem’. “Why?” I started to practice & learn driving it indoors first, under my dad’s expert tips of driving. My dad took so much efforts to teach me perfection in driving ‘Aseem”, thus fulfilling my broken dream of driving a 4-wheeler though indirectly! But, just few days after ‘Aseem’ came home, it started to work faultily again &again. Sometimes, it would just keep rotating around itself suddenly, sometimes just go with sudden increase in speed, sudden decrease in speed, sometimes just didn’t budge at all. One worst thing happened to it innumerable times was- its joystick would just fall off! My dad kept fixing it again & again as was shown by Mr. Singh later one day when we called him home to check ‘Aseem’. Then, again he repaired it. I was told to do a trial which I did, that time it was working properly. Through all this, dad was training me to drive, trying to keep my spirits up, but he told me to detach joy/frustration about ‘Aseem’ so that I won’t feel low when it wouldn’t work. But, I’m not a saint, to get easily detached. I lost slowly my interest in ‘Aseem’ as my hopes that it will work well got lowered with it’s day-by-day increasing faultiness. Still, I kept learning driving it- Dad taught by making me practice going straight to & fro, turning it around the objects like cupboards/drawer-chests/tables/chairs, sometimes going reversre, going in & out of the doors of rooms at home, going in orbit of ‘8’ shape around some objects like chair/small table, sometimes same types of practice in the front-yard of my home. One night, he told, “let’s take a 1st small stroll on the road”. I agreed, bit frightened! Still, gathering the courage I went along with Dad & mom out of the gate, but couldn’t cross the road to go on the other side to be on the proper side of road, so just carried on along the road-skirts. Suddenly a big luxury bus came & I just couldn’t go more out of the way! I just felt terrified but the bus-driver sensed my fear & went by my side very carefully though the bus had speed. That time I felt the hugeness of big vehicles as compared to my little wheelchair. It’s different when you are sitting in your car & some big vehicles pass by you. Then dad told me to turn & go back to home, so I turned & was almost nearing the gates & was going to turn left as gates were on left side. Suddenly from my back, mom noticed some speedily running & barking 4-5 stray dogs chasing some other dog but coming in the direction I was going to! She screamed, “turn fast! turn fast!” I tried to increase the speed but, alas! ‘Aseem’ ha suddenly stopped working ! It didn’t budge from its place! I yelled “It’s not working! mom! dad!” As ‘Aseem’ was made not to move till manual mode was activated by opening some brakes near wheels by screwdriver, it wasn’t even possible to activate manual mode & push it in the gates. Before they could come to help me get in the gates, the dogs almost brushed past ‘Aseem’ but they just didn’t noticed my ‘Aseem’ & thus, I was saved. I was horrified because stray dogs sometimes tend to keep barking or mess around whatever they find as strange! I hope you can understand from this why I was afraid fully at that time. By lot of push from dad & mom, I just managed to take it back home. That night I slept but my heart was beating so fast! Since that day I lost my belief that ‘Aseem’ can take me safely back to my nest! My felt afraid of it that it might harm by suddenly woking faultily anywhere. Also, ‘Aseem’ being heavy about 70kg in weight, it couldn’t be lifted up to go up normal 2-3 stairs anywhere, neither could it go easily up any little ramps because it was working well. My interest decreased in it, since it had gradually been becoming fully faulty, needing repairing continuously! Once, we had been asked to send it ‘Scope’-workshop for necessary repairing. We sent it by our SUV. The technicians wouldn’t answer properly about my ‘Aseem’ that whether they could fix its problems or not on phone whenever we called them. They just shrugging it off, answered in confusing ways. One day they told to take it back & beforewe could plan taking it back home, they called again saying they needed more time to repair! Some other day, they told that they were going to replace the seat with one like that of Maruti car. How disgusting it turned out when we came to know that joystick wasn’t original,so-called imported from Uk but some duplicate of very low quality. Also, when we brought ’Aseem’ back home when they told us, it worked little bit properly but no, its battery after charged would get low in very short time, even when wasn’t used much . Dad decided to talk about everything that was happening to ‘Aseem’ with the technicians at ‘Scope’ & so he went to Pune. He was shocked to know- ‘Scope’-workshop was closed, with no more manufacturing of ‘Aseems’ as they were getting problems with ‘Aseems’ & financial problems of some sort probably. ‘Aseems’ which were sold to people were allowed to be given there for repairing as other technicians working for another technical manufacturers used to ‘repair’ the faulty ‘Aseems’. Mr. Paraag Karandikar & Mr. Singh had left working there & we couldn’t later contact them just for assistance in case of ‘Aseem’ [though they didn’t work for ‘Scope’ any more] as there was no trace of both. Now my ‘Aseem’ is just resting in corner of upper floor of my home, because it doesn’t work any more. The thing that made me experience ‘mobility’ became a biggest fiasco itself….
But now, life is beautiful with my most successful B600 made by ‘Otto Bock’ in Germany! I will tell you about it in next post! Hope I didn’t bore you.
See you!

Saturday, October 24, 2009

Hi,
this is my 1st blog post ! i just hope u all get what u were curious to read about- from next posts which will range from various topics & venture in the fields of my interests.
just everything that touches my mind !
i assure u that i'll write properly with full responsibility & u won't find anything controversial.
so, plz keep visiting & let me know if u feel to appreciate or criticize !
c u in next post very soon ! :)
-YB.