Sneha Murali – My Story About Guillain-Barre Syndrome

I turned 25 recently, this year I celebrated by cycling 25kms at a stretch, but last year this time I needed assistance to make me sit.  A year ago, I was diagnosed with an autoimmune syndrome neuro condition. Alzheimer’s is a condition where people lose their memory, but did you know our body has other kinds of memory as well? We seldom or never command our body to keep our foot firm, raise our hip or shoulders. We just think, “I need to get up” and before we know, we are standing. This happens due to the muscle memory in our body and I lost that, no memory to get up, stand, eat.

Guillain-Barre syndrome is a autoimmune disorder in which the immune system attacks healthy nerve cells in our body starting from the toes and fingers causing weakness, numbness and loss of control. In simple words, I could feel my body but if I wanted to even wiggle my toe,my body  couldn’t remember how to do it. It started as a common cold, and all I wanted to do was go to work and make sure life was as normal as it can get. But things went wrong in the blink of an eye. I couldn’t balance myself or even simply walk. I could not get up at all. With in the next few days I was in an Intensive Care Unit, where my medication started. I was mentally agile –  I constantly reminded myself not to ponder over one question – “Why did this happen to me?” Once this question was out of my mind, I found so many more answers to look for, so many more opportunities to embrace and cherish

Life changed for good. My constant smile, the doctors and my family’s unwavering support helped me to recover faster. But, the real challenge had just begun. I was a 23-year-old human with the body strength of a one month baby. My body had to learn everything all over again – how to open my hand, how to hold, how to sit, how to get up, how to move; all the basic movements right from the start. How do you relearn everything that comes naturally to you from the moment you are born? I practised and made sure I gave myself no reason to feel demotivated. I kept trying to learn how to write, to stand, and to wear my clothes. All the tiny bits of efforts together made me stronger, and soon I was able to stand, able to turn my neck with ease, able to hold a book in one hand, and all I did was try. And now I can weightlift up to 10 kgs effortlessly.

Life is already challenging, and it got even more difficult when I got immobile. What do you do then, when life itself makes living impossible? You become a kid. I  embraced being a child, told my ego and pride that I am growing, and accepted the reality myself before I looked up at others for an answer. I was grateful to always have support around me. I have had total strangers help me walk even without asking. But, a fellow human-only helps when we want to give ourselves an opportunity to be a better version of ourselves. Being able to listen to my needs and fears helped me tremendously. From walking with support to cycling 20kms in an hour, I have done it all. 

 

I am re-learning, and I am doing it well. I am sure that I can walk normally, work with ease. All this uncertainty has given me the confidence in trying and moving ahead, of falling and telling myself I failed so that I can try to get up again and try even more. We have taught our body to do almost everything – how to smile, how to eat, how to stand, how to walk because we tried doing these things as a child. We need to give ourselves this motivation daily – to try even if it’s a small effort and to take one step at a time.

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