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My Life

Handling The Pain

Note: This problem is partly sorted. Last two Monday’s been good & post dialysis there were no complications.

So I spent yesterday from 3 PM TO Today 3AM in a lot of pain & suffering… post dialysis this is what happens on each Monday & I am trying to figure out what is the cause… sometimes there is no reason for things to take place & may be I just need to suffer . The headache becomes unbearable & it is followed by vomiting… the problem is you cannot eat, you cannot drink even water, and you cannot sit or sleep… I use to have the episodes of migraine but this is different from what I experienced.

Here are the two things I try to do when these episodes take place after my dialysis,

I tell myself that I will be fine & think of positive things.
I ask my mother or father to sit with me for an hour or two. It really helps, even though we don’t speak their presence calms me.

Most of the time when these episodes take place I need to suffer through it. There is no other option & now that these episodes have stopped for last two Monday’s I think I am going to be much better. We finally figured out that it is my medication in the morning that is causing this complication & we changed it to night. While my doctors were trying to figure out my dad & I experimented with various things & finally figured out the cause & changed the schedule of my medication.

Pain is bad in many ways & when it is physical I know I cannot handle it after a while… something mental can be always dealt if you have a strong willpower but handling physical pain & suffering through it for last 10months I have huge respect for those who go through it daily. I know few friends & family who got invisible illnesses where they go through physical pain each day & as my running buddy use to say it’s all in the mind…

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My Life

The Loss

Everyone talks about their gains in life but no one talks about their losses…. When I was sharing about my chronic illness to a friend she asked me “Raghava what did you lose? Can we talk about it & see how all this affects your life going forward?” I spoke to her in length & told her what all things were going in my life & how everything changed in a span of few minutes.

Here are few of those things,

1. My career at Deque was spiraling at an upward trend& I was hoping to get a promotion.
2. My plans to immigrate to a new country came to a halt.
3. I have to cancel 17 speaking engagements in 4 countries.
4. The travel to Europe has to be canceled.
5. I asked the girl I was dating to move on & find someone else.
6. Got offered a job in 2 fortune 500 companies & have to pass them on.

While a lot of things changed these are some of the things that were important to me… you just can’t leave everything in your life & get stuck at a point but this is precisely I was asked to do to live longer…. I was put on dialysis & then the eventually a kidney transplant is planned… my dad said health is more important & to fight this illness you need to have a strong will & a desire.

The diagnosis of a chronic illness changes everything your mental state & physical wellbeing… my finances are also hit a big time during this time… I stopped doing consulting & working part-time where I make a half salary… I am working to keep my self-engaged & I am thankful to the Deque who is providing a flexible work schedule…

When I was speaking to my friend about all the things I have to lose because of the illness she asked me “Raghava how do you feel?” the answer was there ready… no feeling, I did not cry, I did not break, I did not worry about the future…I know that another challenge is thrown at me & I need to fight it out…

I said “life is thinking it is going to fuck me but it doesn’t know with who it is dealing with… I am going to fuck it hard”

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Learnings

What people in Bangalore perceive about a Visually Impaired

This video came to my notice & I thought to share some of my views

No we don’t need help all the time… we are as independent as able body people & might need some assistance to do few things… with advance in technology all the things like cooking, cleaning, travelling & all the daily activities can be performed by us independently.

We use white cane to let the world know that we are blind. This doesn’t mean we cannot travel independently, in an inaccessible country like India you can always see us navigating the traffic & travel in public transport without any problem… often people offer help & some of us are receptive to it & some of them are not… People who reject your offer of help are not being rude they are just stating that I am fine & I am independent.
With new currency notes released in India after demonetization people with visual impairment are finding it difficult to identify the currency notes. They Are not in same size like before & am not sure if there is an easy identification mark on them. One of my friends who is born blind & knew braille also said I also cannot identify the new currency notes.
We use computers & smart phones a lot may be better than the sighted people… the only problem is most of the websites & Apps are not accessible to the screen reader technology that we use. Here is a demo of a blind user demonstrating how we use computers

If you have any questions on our independent living or how we navigate the world without assistance then the comments section is open. Let’s talk the possible & the impossible…

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My Life

Use the Word Disability & Stop Giving us Fancy Names

Hey all,
We need to get little language here right. We need to use the word disability which is correct & is understood by all.

Differently Abled- Are we all not different & don’t we have different abilities. So how can call only disable people as differently abled?
Special needs- we all have different needs so how can the needs of disable be special?
Challenged- this is the latest addition I am hearing from a lot of youngsters while referring to disable groups… if you cannot drive a car then you are challenged so are we calling all the human race a challenged one because each one of them cannot do something or the other?

We as disable identify & would want to be identified by the right language. Disability is the word because we have limitation that can be seen or unseen. We talk about them openly & some may want to keep it to themselves.

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My Life

It Took 3yyrs To Get Back to This

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.”.

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My Life

The Bucket-List is dead

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…