Hamari Adhuri (oops it should be poori) Kahani

I was 12 years old when my sister was diagnosed with a rare neurological problem, something that was never heard of back then. Being a science student, my sister tried to learn more about the problem. Because of the limited resources back then (2000), it was not easy to find a doctor who was fully aware of it. Apart from the family doctor and a cousin, nobody had a clue about the problem.

Friedreich ataxia (FA) is a progressive disorder resulting from a mutation of a gene locus. The onset of Friedreich ataxia is early; it typically presents in children aged 8-15 years and almost always presents before age 20 years. In most cases, the problem is inherited from ancestors. However, there were no visible cases in the family. As the problem progressed, my sister had to discontinue college. A couple of years down the line, I developed the same problem. I was 16 when my college professor teased me for using the lift instead of taking the stairs. The same continued but I was adamant to finish my graduation and wobbled my way to college.

Most doctors we approach are unaware of the problem and they get better information from us. The most disheartening thing here in India is that there is no proper research going on to bring in a possible treatment. We have formed a group along with other ataxia patients and have collected some data to help with the research, but there is still no progress.

Being a progressive disorder, ataxia kept growing and I am currently restricted to using a wheelchair (since 2016). Back in college, I was selected for the final rounds of interview for several reputed MNCs but I would get rejected in the face-to-face rounds. I blamed my walking for it. After my graduation, I applied for work from home jobs but they all required experience so I stopped applying. When in college, I was reluctant on using a wheelchair. But seeing my old parents struggle with my sister, I was compelled to use a wheelchair. That was when my condition started to detrition. In FA, loss of ambulation typically occurs 15 years after disease onset. More than 95% of patients are wheelchair bound by age 45 years.

We have seen our condition and we have also seen and heard stories from people suffering from rare disorders. We don’t consider ourselves as disabled, rather I think our infrastructure is disabled. We have to work our way every day. Both of us have tried to work outside and we did too. My sister worked at Babukhan Estates for 3 years as an HR consultant and she is continuing it as from home now.

I started working right after my btech and I can now write on any given topic. During the 4 years of my career as a freelance content writer, I have faced a lot of clients who wouldn’t pay me after getting the work done. Or they just underpay me. We both have worked on our skills and search to look for work from home opportunities. It is seasonal employment. We sometimes get lucky and find clients and other time we just work to stay motivated.

We are now a crucial part of a company Rudraksh Web Technologies - a firm setup by one of my friends with Muscular Dystrophy (which is a similar problem). Our aim is to stand-alone without attracting pity. We would seek employment opportunity and medical help. At the same time, I also work for a startup – Tulfa – a marketing company and my CEOs are kind and thoughtful enough to provide the writers with the option to “work from home”.

Apart from work, I also dreamed of pursuing my Masters in English, but I had to stop it owing to the difficulties of going to a college with poor infrastructure. While I am not really worried or under-confident because of my Ataxia, the poor state of infrastructure, lack of political policies and the mindset of people towards disability, is a major concern that doesn’t let me sleep. I have sent several tweets to both local and central government but there has been no action from them.

My parents are 60years old and they have troubles with their own body and having two more children to take care of is something unimaginable but they are doing it with the brightest smile. My sister, who is in the US, has her heart here. She takes care of our needs and volunteers for disabled in the US to make up for her lost time here.

Convinced that the government has zero concern towards inclusive infrastructure (I have tweeted to the PM and CM), we are working to establish a rehabilitation center where the disabled get the opportunity to stay fit and lead a happier life. We want to create homes, recreation and fitness center under one roof so disabled can be more empowered and get to live on their own terms.

Are you emotional? Here's some refreshment

https://video.wixstatic.com/video/7d5d61_a16b713d48ea41e793a8653b81252f4c/1080p/mp4/file.mp4

PS: I was gathering information for someone else and thought it would look good here... Also I will soon start accepting donations for the walk and rehab.