Mr. Shivaji BargeI am sharing my story because I see, hear and read so much misinformation about HIV infection and transmission. All the while, I realise that I am alive today because of the anti–viral medications and the support of the network, my family, and ART. These were not always available to the many people I lost in the past, who were sacrificed by the ignorance of HIV and the lack of someone to give them inspiration. I learned very well from this and I have a better life today. I read about a young man, Leon, who went to visit some prisoners and told them of his fight with HIV. One said to him: “Anyone who’s ever been a success at anything will attest to the importance of mind–set, I commend you.” In this sentence I find inspiration to live with HIV honourably.
I am a common man. I have a lot of dreams about the life of the common man and how to live prosperously. My approach towards life is that positive thinking and simple living is my life’s centre point. I am sharing these thoughts without hesitation of mind so it is an opportunity to tell something about myself. Every person living with HIV thinks "My story is not really a unique story at all. It's a lot like the stories of all the other 35–year–olds who are living with HIV”. And that's exactly why it needs to be told.
There are people out there who are living and following their dreams, and you should do the same. Pay attention to what you're doing to your body, and don't let life slip by.
I was a common man living with my family, two charming children and my wife. Every thing was going very well in my life. I am a working for a good salary from the Maharashtra State Electricity Board (MSEB) also my nature is free and frank.
Here I established myself well. I was helping the Union board in MSEB in the fight for good conditions and rights for workers. Since I joined the Union I had been fully involved and I am very happy with this time.
Then in 1999 I had a Sexually Transmitted Disease (STD) skin problem. I saw Dr. Aalhad Jadhav in Aurangabad who is a skin specialist. He gave me tablets and for some days I improved but a few days later the same problem recurred. Dr Jadhav suggested going to the Integrated Counselling and Testing Centre (ICTC) in Aurangabad for an HIV test. I was diagnosed positive. I cannot express in words how shocked I was. I was very frustrated in my mind and had lots of concerns for my family, my children, also my job in MSEB and union position, my dreams, my medical insurance policies.
I realised very quickly that I needed to manage my stress levels. I retired on medical grounds and set about managing my chronic health condition and responding to the many barriers and challenges of HIV. But about my infection, how did I get "it"? What happened? No one is supposed to ask the question, but we have to ask it of ourselves.
I progressed unusually quickly and baffled all the experts. I told my elder brother about my HIV status. He told me not to worry, we will go to the big hospital. Do not worry your mind and live a better life from now on. After the kind support of my brother I was able to relax a bit. This was my first victory, the support of my family. Then I had my wife tested and the second victory was my wife being negative. Now I was living with HIV very well and Dr. Jadhav reminded me go to the ICTC from time to time.
My Network Journey
In the year 2000 I learned through Dr. Jadhav about a programme on the subject of HIV. I also heard about a conference on HIV at the ICTC in Aurangabad. I decided to go to the conference and there I met Rajesh Shirke from the Network of Maharashtra People with HIV (NMP+) and asked him a lot of questions. It was memorable moment, and gave me great confidence when Rajesh told me “I am also positive”. These words inspired me and I went to Pune and met Amer Kadam, Manoj Pardeshi, Shabana Patel, and Leena Rane. After discussions we decided to establish a District Level Network in Marathwada Zone. I helped set up the first network in Aurangabad. I lived a joyful life from 2004. I helped the network get established in Beed and I am now working to help PLHIV people get their rights. In the 2006 NMP+ election I was elected Vice President, then in 2008 the President. I feel very happy towards the working with all the board and members, and when I work with NMP+ I have a lot of dreams in my mind and hopes to do great things for the future of NMP+.
My Goals for 2009 and Beyond
My primary goal for 2009 is related to leadership. I am absolutely committed to developing leadership and to significantly raising the profiles and positive role models of people living with HIV, disabled people, and people with long term health conditions.
In my view it is the responsibility of professionals such as coaches to invest in and encourage the abilities, skills and leadership contributions of people who are living with ill health, disabilities and HIV. Using my leadership as an example I hope I demonstrate a level of commitment and empowerment that might inspire and encourage other people who are facing the many challenges of HIV and disability, at some point in the future NMP+ will get its own training centre.
I believe that society has the potential to benefit from HIV and disability because it provides each and everyone of us with an opportunity to become more accepting and is an opportunity to develop a more compassionate and humane response to this continuing global epidemic and to the complex range of impairments with which many people live their lives.
The continuing theme of leadership and this year’s theme for International AIDS Day of ‘Respect & Protect’ in 2010 provides us with the opportunity to commit now to our shared responsibility for transforming negative stigmatised attitudes. We must also encourage actions that will prevent the continuing spread of HIV and discrimination, along with providing coaching relationships that promote and enable empowerment and leadership.
Contact No: +91 9325262585