India

My name is Abhijit Ganguly.  I am 24 years old and from Kolkata, India.  One evening in 2003, I was watching a football match on TV while lying on my bed.  Suddenly, I felt severe pain in my shoulder and throughout my back, and the pain was rapidly intensifying with every second.  I rubbed a balm in the affected area, but it did nothing to relieve the pain.  The pain was like a burning sensation and was severe.  I was unable to sit and eventually I had to lie on the bed.  I skipped eating my dinner.  By around 11 PM, I was feeling very strange.  First I lost sensation in my hand and then I lost sensation in my legs.  Then I was unable to grasp with my hands and I could no longer stand.  I was not able to urinate.  I did not have any strength and I did not sleep the entire night.  I thought I was going to die. 

In the morning, our family physician came to our home.  He asked me whether I had been hit or experienced some kind of accident.  I told him that I hadn’t.  I told him that I could not pass urine.  He had no idea what was happening to me and advised that I be admitted to the hospital.

It was Sunday and it was my good fortune that a neurosurgeon was in the hospital.  Most doctors do not stay in the hospital on Sundays.  He ordered an MRI.  It was very kind of him to call a diagnostic centre and he persuaded them to perform the MRI.  Diagnostics centres are closed on Sundays.  I was admitted to the ICCU ward. I was awake the entire night trying to understand what was happening to me.  Was I going to die?  I had to ask the nurse for a glass of water.  I was totally helpless; I had to depend on someone for a glass of water.

The MRI report came back the next day and I was given a TM diagnosis.  I was put on high course steroids.   After some time, I felt as though a current was passing through my veins.  I was able to move my hands and legs.  I was having to catheterize myself.  After a couple of weeks, I was released from the hospital.  I had been begging the doctor to allow me to go home. 

I become very weak.  The neurologist prescribed me steroids and, unfortunately, I had an allergic reaction.  I had eruptions over my entire face and I looked horrible.  I went to a skin specialist who explained that the problem was caused by the steroids.  He told me that he wanted a photograph of my face because my allergic reaction was so unusual.  My face cleared up over a period of about four months, but I still have some scars from the reaction. 

I became very depressed; I had so little understanding about TM.  What did I do wrong that G-d gave me this disease?  It was particularly frustrating for me as the doctors did not clearly explain to me what had happened; what was TM?  My friends and relatives each shared their own theories of what had happened.  Some said that it was a result of having excessive fast food; some said it was from germs in my body; and someone asked me if I had used drugs!  I stopped talking to people.  The days in the hospital haunted me.  My life was becoming miserable and I was afraid of the recurrence of TM.

Then one day I found the TMA website.  It was of great help.  Sandy is a wonderful person.  The website was an eye opener for me.  I was so surprised to see that there were so many people around the world with TM.

It has been around four years since I got TM.  I have come a long way.  I have completed my Masters in Economics.  I have occasional nerve pain.  I have very difficult bowel problems and I have limpness in my right leg. I have become a pessimistic person, but I try to inspire myself when I think about the lives of various people with TM who have been more seriously affected than me.

I am interested in starting a support group in India.  I think the best person who can understand a TM affected person is another person who has TM.  Through a support group, we can share our feelings and support each other as a family or community.  I know that most of you have gone through similar experiences and feelings after being diagnosed with TM.  What is TM?  Why did this happen to me?  How am I going to get my life back?  Through a TM Support Group in India, we can offer each other emotional support and we can share information.

Our support group is for people who have TM, ADEM, NMO and ON, their family members, and, hopefully, physicians in India who treat people with these disorders.  I would love to hear from you.  My contact information is below.  And please think about getting involved.

I would also love to hear from other support group leaders from across the United States and from around the world.  I would like to learn from your experiences.  Please get in touch with me; it would be wonderful to hear from you. 

Abhijit Ganguly
15 Elliot Road
Kolkata 700016
India
Phone number: +91 9433702379
Email address: aganguly@myelitis.org

Editor’s Note:  Words cannot describe how thrilled I am to include Abhijit’s article in this newsletter announcing that he is starting a support group in India.  I began regularly corresponding with Abhijit shortly after he received his TM diagnosis.  We have been writing on a weekly basis for almost four years.  Abhijit does not have internet access in his home, so he does his emailing from a cyber café near his home.  Having TM and living in Baltimore is difficult.  Having TM and living in Kolkata is a different kind of difficult.  Abhijit is a very courageous young man.  He has worked so hard to make a good life for himself.  In getting his master’s degree in Economics, Abhijit had an almost two hour train ride to the University every day – one way.  Doing this with TM has been a grueling experience for him.  Given the incredibly competitive and difficult economy in India, Abhijit is currently working on an MBA to enhance his career opportunities.  Societal attitudes about psychological issues and counseling, perceptions of people with disabilities, and social, economic and medical support services for people with disabilities are slowly improving in the United States, but there is a very long way to go before these issues are where they should be.  Do you want to venture a guess as to where these things are in India? 

Over these last few years I have come to know and to very deeply care about Abhijit and his family.  Anushree, Abhijit’s 12 year old sister, is my number one pen pal; she manages to find a moment here and there to write to me between studying for her many exams. 

Abhijit will greatly benefit in so many different ways from doing this support group work.  And he will be able to do so much good for other people in India who have these rare neuroimmunologic disorders and their family members.  Thank you, Abhijit, for taking on this important work.  I am so very proud of you!