Raghava's Blog

I was at Word Camp 2016 sitting with Alexander Gaundar who is one of the organizers of the event. I said to him Alex we need to do a similar event for digital Accessibility. At that time Tech Share is the only accessibility event in country & it use to take place once in two years. Tec share has not taken place after 2016 & not much of digital accessibility is spoken in the regular dev & design events. This needs to change I thought, Digital accessibility should be brought into main stream. It is lack of awareness which is the bigger problem & I want to solve it.

It took me 3yrs to get back to the idea of holding a digital accessibility event in India. Due to health challenges & other things I kept off a lot of ideas & concentrated on more important things. Now that I have some time to think & work on I thought I will pursue the idea of building digital accessibility communities across India. I floated the idea with some friends & got lot of positive response. So I made a proposal & sent it to all my contacts that can help. Things seem to be moving in right direction. I will know more about what the output in next few weeks. I got more work done in last 20days on this & I am impressed with my progress.

I will share more details on this event whenever available as this will be a big step for me & my mission of seeing digital accessibility being considered as a right of person with disability.

P.S. I want to do this because of one more reason. I want to check this off from my bucket-list “Hosting an amazing event.”.

The bucket-list is dead…. Am not pursuing it anymore & I will replace with something is more doable & realistic… a lot of things on that list need great health & an able body…. I got none at this moment… it even pains me to just open & read the list! I avoid even opening the blog.

Before I shut down the list I thought I will put one last effort on this one “Hosting an amazing event.”… Am working on something & I will announce it in few days…

Last Tuesday I went to hospital as they called me to give some counseling about the kidney transplant procedure…. they asked to bring my parents along & I went with my father…my father explained that this is a regular protocol for everyone who signed-up for the organ transplant. The doctors educate the patients & their family about the transplant procedure & the risks involved…

There were about 7 patients for the counseling & we all assembled in an auditorium…The doctor ran us through couple of slides explaining how a kidney transplant is done, how they harvest organs, how much time it takes to complete the transplant, precautions that they will take post operation, complications that might occur once the transplant is done & how we need to manage the life after the transplant…This was a lot of information & I was aware with most of the information…I read all about it on Google & consulted with other patients who has gone through a kidney transplant.

So the average life of a transplanted kidney is 10-15yrs & it might also come 40yrs…There are live examples of people living with a transplanted kidney for last 30yrs is what the doctor confirmed to us…Then I asked how long a person can live with dialysis? The doctor said we can live 30-40yrs if the patient is not diabetic…Diabetes normally affects other organs so the life span of a person living on dialysis &having other complications might die early..

The final verdict is that “Transplant is the best option” & will improve the quality of life…so don’t be worried about transplant is what the doctor told us… while I am not worried about the transplant earlier after the counciling there is a nagging itch somewhere in my mind that is asking me to evaluate other options if possible…

After coming home I said to my dad…the post operation complications are scary…even though they might occur in 1% to 5% of patients we need to take a chance blindly & have faith that all will go well… he agreed with me & he is sure that all will be well moving forward…As he often say’s this is a mind game, we need to be strong & find solutions for our problems….

During December when my doctor said I need to for dialysis or there will be multiple complications because of high creatine it was difficult to accept…but my dad gave me enough courage & next day I got admitted into hospital…the initial weeks of dialysis were stressful to me, I felt as if I am living in the hospital dialysis unit even though it was just for 5-6hrs & 3 times a week….

My dad said this is a mind game & we need to be strong mentally…if you give-up then it’s going to be tough….the future is unknown for now & I need to take it slowly…As I move forward my path will become clear & with it I get more clarity…

Now I go to dialysis with open mind & it doesn’t feel like I am spending time in hospital…most of the staff knows me & they treat me like prince…some come & make it a point to spend time with me…We chit chat & try to crack jokes….once I changed my perspective I started seeing that all the staff has a unique personality…in their 9hrs of shift they always smile & keep the mood light..

Initially during January I worked from home when I got my dialysis done but now I am going to work…I am getting my dialysis done early in the morning & going to work in the afternoon. As I am working part-time this is working fine for me…The dialysis technician reminds me always that I need to eat high protein food & be strong both physically & mentally…

So I got into a routine with this new life & I take the day as it comes. No extensive planning & no anxiety about future…The path will reveal it-self as I move forward…

I always plan things ahead of schedule & use to work hard to make things happen…..I planned what I want to achieve & was working towards my goals…the kidney disease changed all that, my goals & dreams don’t matter anymore…there is only one agenda I need to survive this….I handled the mental stress well…with a lot of family & friends support I am being very positive about how things turned & I am trying to engage myself each day. I tell myself that today will be a better than yesterday & move forward…

While I was going through all this I realized that my desire to live a full filling life was going strong each day…I never thought of death much or an illness that needs constant monitoring but when I am challenged with it kind of changed my perspective towards living…As Steve Jobs said “even people who want to go to heaven don’t want to die”…while dialysis is keeping me alive & giving me a certain freedom my desire to get out of it is more…

I heard that a lot of them doesn’t come out of the phase where they lose hope & desire to live because they were put on dialysis….I believe that dialysis is not too bad you just need patience & a lot of tolerance to do it 3times a week…initially I struggled with it but after a month I kind of settled into routine…. I started taking it one step at a time & started living in the moment…

I believe life is beautiful & it just need an open mind to work on our challenges…..I want to live a quality healthy life & all those plans & dreams got changed now…I don’t know what universe has planned for me, I hope that I will do some great things in future…The kidney disease changed my perspective towards living & I want to live long…

I am finally working on my book…I am more serious than ever now…it’s a thriller, am going to share some excerpts on my blog….. I shared about this project with few friends in last 2yrs & every one said this is something new & I must definitely pursue it…I haven’t thought much about it for a while & I think the time has come to work on this project.

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