Swarashree Mahajan
My Ataxia Fight
ATAXIA….. A completely unknown word to any person until someone close is diagnosed with it. And after that “ATAXIA” related stuffs are maximum in google search history of that person.
Hey Hi, This is Swara and I have had very long association with word ATAXIA.
Though I was diagnosed with SCA3 (Spinal Cerebellar Ataxia 3) in 2015, my fight with ataxia started from year 2000, when my dad started showing symptoms of ataxia.
My dad is a Indian classical musician. Until 1998-1999 I remember dad being physically very active. But around that time we realized that he used to tilt on his left side while walking. This progressed to he losing his balance while walking, and walking like a drunkard.
We did not know what was happening but knew that something was wrong with dad. We consulted local doctors initially and after undergoing multiple tests, they came up with a conclusion that “Mr. Mahajan, Kya aap bohot tension lete ho? Aap Sochna kam karo, you will be fine.” Also they prescribed some sleeping pills for my dad so that he sleeps more and thinks less.
There was only one doctor, who told us that ataxia cannot be cured and we should start saving for our future. Honestly speaking we did not trust him and somewhere felt he wasn’t a good doctor.
15 Years later story repeated itself.
I started to lose balance while walking. My health was showing similar symptoms which dad showed in year 2000. But this time our approach as family was completely different. Acceptance for my ataxia was very fast.
We consulted the same neurologist who had told dad that there was no treatment for ataxia. He told me the same but this time we did not feel that bad.
I knew that as there is no treatment for my disorder I just had to figure out how to survive with it. I consulted a dietician and reduced my weight from 68kgs to 52 kgs in span of a year with dieting and walking as I knew that would have been difficult for Ram (My husband) to take care of me if I am over weight.
Dad’s health continued to deteriorate and then we started to consult few neurologists in Mumbai. After his CT Scans, MRI and multiple tests we knew that it was a rare genetic disorder known as Ataxia.
In any family when someone is diagnosed with some rare disease, family goes through some emotional phases. First of all is when everyone denies the diagnosis and firmly believe that something is wrong with the report. Then comes the phase of “Why me”. In this phase family feels that why did this happen only to me. Third is the phase of Acceptance wherein we accept the fact and then in last phase we start to look for solution and say “OK. Now what further”. It’s very important for any family to get last phase at earliest.
Biggest mistake we did for dad was that we were stuck in first phase for long. We took time to accept that dad had neurological disorder. So until we reached in the last phase of finding solutions, dad’s health had deteriorated to greater extent.
I remember telling Ram that “Don’t make me a guinea pig for therapists” as I knew that desperation for cure for ataxians and their family makes them to take unrealistic treatments.
That time I was working in a Bank and due to my health issues I had to quit my job. It was very difficult phase for me emotionally as I had spent all my life chasing career and here I was …. That time I realized I was indeed blessed with amazing husband who motivated me to peruse LLB. I did take admission in Law College and then was occupied with my Law studies. Sometimes we need some external factor to feel “Worth Living” and Law studies proved to be that factor.
My disease progressed pretty fast….. Faster than my dad. Hence imbalance progressed to inability to walk alone. My all movements started to restrict. Small activity started to lead to tremendous muscle ache. My writing ability was affected negatively. I just used to pray god to help me complete my LLB and touchwood god did help and I could complete LLB.