Alexis's Ark

My story

By Alexis Leon (November 1997)

I wished I were dead. I was lying in the casualty department of a hospital in Madras. There was a lot of activity going around me. Doctors, nurses and attendants were rushing in and out. Machines were being wheeled in and I was being connected to a host of monitoring machines. All around me there was hectic activity. Monitor screens blinking, graphs going up and down, blips, bleeps, beeps, conversation of doctors and nurses; "BP is down; pulse very weak; he is going down; get some fluid into him; start an IV". But for me these were none of my major concerns. I was under tremendous pain. My head was paining like hell. There was a throbbing feeling and it was increasing by the minute as if the head was going to explode. My collarbone was fractured (I didn’t know it then) and was giving a great amount of pain. I was having great difficulty in breathing and couldn’t move my legs. In fact, I was not able to feel anything below the chest. I wished I were dead.

The day was 2nd December 1993. As usual I went to the office at around 6 AM. I was in the first shift. I was working as a Systems Analyst with Tata Consultancy Services (TCS) the number one software development organisation in India. I was in a very happy frame of mind. In fact, it was one of the happiest periods of my life. I was going to get married on December 26th. Then on January 15th, I was going to Switzerland on an assignment for TCS. Actually I was on cloud nine in those days. Everything seemed fine and perfect. It was one of those times in everybody’s life, when life feels wonderful and fantastic. In the office, I had some discussions and reviews with my colleague. Then with my friends I went for coffee. My friends were generally teasing me regarding the marriage and honeymoon in Switzerland and we were generally chatting.

By around 11AM, I left the office for my flat, which is about 6 kilometres away. I had an appointment. About 1 kilometre from the flat there is a crossing. It is a very difficult junction and that day it was unusually crowded. I was waiting for the signal and when it came I started my bike. I started my riding career when I was in college and with 6 years under my belt on different vehicles, I had a spotless track record. Had no accidents. My reflexes were extremely sharp. But that day my driving skills, my reflexes, and most importantly, my luck failed me. I was just crossing the road, when another vehicle ignoring the signal came and hit me. It must have been coming at a very high speed, because, I was thrown off the bike. I landed on the road on my head and right shoulder. In that process, my spine bent and got crushed. I didn’t know anything about spinal cord injury (SCI) till that time. But in the case of accidents, the cardinal principle is not to move or turn the person. This is under the assumption that any accident can result in a SCI. The patient should not be moved till medical help arrives and even after, all care must be taken not to move the spine. The first aid courses the policemen are supposed to take when they join duty are supposed to include this. In developed countries they are trained for such an event. While I was in the hospital, I saw a program in the television called 999, where an episode was about a police woman saving a horse rider by not moving him till medical help arrived, after he fell off from the horse.

But in my case every rules regarding ‘How to treat a Spinal cord injury patient’ was violated. The policeman tried to lift me into an automobile. But since I was very heavy (about 72Kg) he couldn’t do that. Then he with the help of the driver dragged me into the vehicle’s floor. But since I had very broad shoulders I wouldn’t fit in there also. So I was made to lie at a very awkward angle on the floor, till I reached the hospital, which was only half a kilometre from the accident site. That was one of the most unforgettable journeys in my life. I was really seeing stars. In the hospital the doctors immediately found out that I have a spinal cord injury. But since my condition was not stable the doctors decided to postpone operation for some time. I spent seven agonising days in the intensive care unit. The fractured collarbone cut a blood vessel and blood flooded my lung cavity and my lungs collapsed. Then the doctors had to drill holes into my chest and drain the blood. On the 7th day I was operated and my spine was stabilised. After post operative recovery period, I went to another hospital for rehabilitation. There one has to undergo an initial assessment and check-up before starting the rehabilitation process. Till then, everybody was giving me false hopes that I will be able to walk and return to normal living. But at the rehabilitation centre, I still remember that day, it was 15th January 1994, the occupational therapist, after her assessment told me that my goal will be to attain ‘wheelchair independence’. It didn’t strike me immediately that what she was saying was that I won’t be walking again in my life. When the realisation came, it was such a shock, that I was not able to react at all. I had to use all my will power to appear calm and smile, because my parents and my brother were with me. If I crumble they will also do so. So I smiled (if one can call that a smile) and asked her when do we start. She said probably in a day or two. The therapy started with upper limb strengthening, putting me on a tilt table and increasing the angle to 90 degrees, so that I won’t feel dizzy when I sit or stand up.

I am Industrial Engineer by profession. In Industrial Engineering, one of the fundamental principles is to produce maximum results with minimum resources. We call it Productivity Improvement. In rehabilitation process, that is exactly being done. The spinal cord injury has rendered most of the body useless. So managing those functions, which you were doing when you were 100% fit, with the limited resources that you are left with is a very difficult and time consuming process. Everyday the therapy used to start at 8 AM and lasted till 4 PM. There were rigorous exercises to strengthen the upper limbs, which you will be using in the later part of the training to do most of the activities. It is a very hard and lengthy process and there are no royal roads to it. One has to sweat it out. On the other hand, it is very exciting, challenging and an excellent opportunity to prove one’s mettle. The therapists and doctors helped me in making me as independent as possible. The rehabilitation centre is like a joint family. People of different castes, from different states, from different social, financial and educational backgrounds, co-exist and help each other in such a way that is beyond imagination. There are games, sports and other recreational activities, cultural programs to entertain you. There are group discussions, where people share their experiences, anxieties, aspirations, difficulties and fears and try to find solutions for them. Here also there is constant motivation, help, encouragement and even participation, from the therapists and doctors.

So at the rehabilitation centre, I was taught to manage my activities of daily living, like dressing, bathing, etc. all by myself. Then I was made to stand and walk using callipers and walker. Here also, without the constant encouragement and support of my family, friends, the therapists, and the doctors, I would not have reached my goal. When I was re-learning to walk in the Physiotherapy department, I was being taught how to be independent on a wheelchair by the occupational therapists. Since my level of injury was quite high (T5), my sitting balance was not very good. So in order to get that, I was asked to do some silly games (at least it occurred silly to me at that time) like transferring small wooden blocks from one side to another, stooping (to conquer) and picking up things from the ground, etc. Slowly my sitting balance improved and I was put on a wheel chair. Then they started teaching me how to propel the wheel chair gracefully, how to do the transfers from bed to wheel chair, from wheel chair to car, etc.... Advanced wheel chair training involved doing ‘wheelies’ on the wheelchair to get past small hurdles and to travel on rough terrain. When the doctors and the therapists felt that, I was ready to face the real world, they said it was time to go.

From the rehabilitation centre, I went to another hospital for a stint of Ayuervedic treatment. The treatment there improved my condition a little, though nothing dramatic happened. But there I got enough time to think, to plan my future, to rearrange my priorities. Till then, that is after the accident, I was living in a protected environment. Now, I had to face the real and harsh world, which even the 100% fit people are finding very difficult. In the hospital, the treatment was only for 1 - 2 hours a day, which gave me enough time to prepare myself to face the world. Like every young person, I also had dreams, dreams about the future, about life, career, family, home, kids, etc. But everything was shattered to pieces on that fatal day. There I got enough time to collect those broken pieces and put them back into some sort of a shape. But the shape that came out was entirely different form the original one. But what ever happens, life must go on.

I have learned a lot from the accident. First and foremost is that there is something called Spinal Cord Injury and most of the people are ignorant about it. Secondly Friends and Family. Even though I have read stories of people giving their lives for friends, I have never before experienced that kind of friendship. May be it was there, but I never felt it. I am proud to say that, I was fortunate enough to have such a very good friend who was with me throughout the entire process. He used to visit me every week travelling a distance of about 140 kilometres, used to bring me books, news, and used to share all my anxieties and fears. I could tell all my problems, fears, apprehensions, etc. to him. I could discuss my future plans with him. It is very essential and important to have a good friend with whom you can share your fears, problems, ideas, etc. May be this is one way God has blessed me. By giving me a very good friend. Not all people in the world are that fortunate.alexis3.jpg (25575 bytes)

My family was the most important factor. They gave me courage, suffered with me, cried with me and endured the pain with me. In fact, they must have suffered more than me. My brother was with me from the day one and is still with me.

A lot of my friends, superiors and colleagues were there to take care of my needs, give me courage, mental support and any other help whenever I needed it. They used to send me cards, books, cassettes, letters of encouragement and what not to cheer me up. During those periods of physical pain and mental depression, the only thought that helped me in keeping my spirits up was that there are people, in fact so many people, who loved me, who believed in me, who would support me, who prayed for me and most importantly who wanted me back.

The organisation I worked for was another factor that helped me a lot. They promised me that I will not lose my job and can join back for duty as soon as I was independent. I didn’t know such kind of love, compassion and human values still existed in this modern world where ‘Winning through Intimidation’, ‘Creative aggression’ and ‘ How to fight dirty...’ are the buzzwords. This accident has increased my belief in people.

Another thing the incident has taught me is that how precious are the gifts that God has given us; our limbs, sensory organs, etc. which are usually taken for granted. Only when we lose them, we know their value.I used to be a person who planned everything and was very systematic. But now sometimes my plans and schedules go haywire because I have to depend on somebody who is not as punctual. I get frustrated easily when for things, I could have done, I have to depend on other people. Another factor that makes life miserable is that in India, 99% of the buildings and places are not wheelchair accessible. This has restricted my mobility considerably. I am no longer able to go to my favourite bookshops, restaurants, theatre, etc. But I am getting used to it.

I joined back on duty after spending nearly eight months in different hospitals. I used to go to the office in a hand-controlled car. My company gave me enough help to get settled in. They gave me an office in the ground floor, made everything wheelchair accessible and gave me every facility to make me comfortable. After working there for about 18 months I resigned from the company. The main reason for this was that I was not able to go to work regularly and because of pressure sores (due to continued sitting) and increase in spasticity which made it impossible to make the wheelchair transfers independently. So I started a consulting firm along with my brother. The advantage was that I could work from my home. It was during this time that I thought about writing. Since my mobility and hence social activities were restricted, I had a lot of spare time. So I started on my first book, without any idea of how to write a book. But reading was one of my hobbies and good books always inspired me. Whenever I was depressed, I used to read books about people who have struggled and succeeded against all odds. These stories of courage, determination and perseverance used to charge me up and I will start working with new strength. Today almost 4 years after the accident I am the Managing Director of a successful software development company and have authored 11 books.

I am quite satisfied (as satisfied as I can be) and enjoy the work that I am doing. The friends, the work, good books, motivational videos, movies, etc. help in keeping the depression at bay. Only when one doesn’t have anything to do depression sets in. I am not saying that, I don’t get depressed. Occasionally I do. When I see people riding bikes, climbing stairs, doing things that I am unable to do, I feel sad. Sometimes I cry. In fact, it helps in clearing the mind. But in my viewpoint, the occasional ‘bouts of depression’ is a natural process. If one has suffered such a lot and still doesn’t feel depressed then he may be having a mental problem.

But mind is more powerful than the body and there are no wounds that time can’t heal. When I was in the hospital one of the doctors gave me a book by Gorgdan McDonald, ‘Ordering your Private World’. The book is about how life can be made enjoyable, peaceful, comfortable and worth living by making ones private world (mind) in order. That book has helped me a lot in attaining self-discipline and courage and has taught me to handle frustrations and depressions.

Another thing that has helped me in continuing the fight was a piece of poetry and an article which came in the Reader’s Digest. First the poem. It is ‘Don’t Quit’ by C. W. Longenecker. The article I am referring came in the Reader’s Digest September 1994 issue. It was titled ‘Lessons my children taught me’ by Chang Hsiao-Feng. In that article, she writes about adversity " When God closes all doors, He opens a window. Often we spend so much energy banging on closed doors that we forget to feel and enjoy the breeze coming through the open window." Now I am learning to enjoy the breeze coming through the window.

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