When life changes…

What if i say we all are really lucky and blessed? Abstract statement? I know…. Let me share an incident… Being a student of Psychology, i recently visited a non profit organization where people with different problems,street children, those with MR(mental retardation), differently abled etc are given a proper place to stay,to eat,to sleep etc. There i met two brothers who have a rare disorder of Friedreich Ataxia…. They developed it at around 17-18 years of age and it is found only in boys that too 1 in 50,000. The organs, body parts starting from legs and hands begins to deteriorate and slowly it affects your heart, lungs etc. It doesn’t affect your brain, hence your cognitive processes remains intact.

They both are in about their early 40s. Both are bright and educated and have desires and aspirations like we do. Just imagine that life is going on normally, where your mother is running behind you with food of your choice, you are bright and happy, pampered kids,and everything is up-to date….just then you begin showing symptoms of one of the rarest disorders that has no definite cure and you find your bright life getting shattered as if entering a tunnel with no end to it. Its not only heart breaking but heart wrenching too. Today they are kept at a place where parents visit just once a month, these brothers cant carry out their basic self help skills with ease and need an attendant, cant even turn sides on bed and if they fall from their bed at night, they simply cry. I asked them if they like the food here to which they simply replied that there is no mother here to look after you and your taste buds. They value their parents and especially sister a lot…as they both wear a green band given by her, but then they cant meet them every now and then. In short they are robbed of their happiness and joy that has created a vacuum that just sucks their life’s motive day by day. The youngest brother is a quite chap and is tech-savvy but is unable to operate laptops as his fingers have curled up. Yet he pleads to be given a chance as he has that sparkling desire to atleast pursue one thing he loves in his typically hopeless life.The elder brother on the other hand is a loquacious person and has a passion for books, so he keeps on reading novels and requested one from me too. I left my number with him and in a joking manner told him how am sure he wont call me back. This one thought changed one aspect of his thinking. He thought about my dialogue and couldn’t sleep for 2 nights as since 5 yrs he never tried saving a number in his phone. My heart leaped with joy when till date i receive his calls….
After visiting here, i realised how precious our relations are. They don’t get anyone to talk to, to share their feelings and they have so much deep seated agony in their hearts which they haven’t easily let out. Yet one of them is so positive and optimistic and he wants to die with a smile on his face. A tear dropped from my eye which i was trying too hard to control…and their thoughts lingered on my mind for nights. The lesson i learnt is that of relations and life in general. When you have loving and caring people around you, VALUE THEM, feel blessed and make them feel special as they care for you daily. I value it more now because i have visited a place where people have just this one main wish that they get people to talk to and to have those around who can love and for care for them.

When you know there’s nothing but hopelessness and helplessness, yet you choose to smile….that’s when life begins πŸ™‚

Hope this post gives you some insight into how blessed you are… Keep giving your suggestions. Happy Reading πŸ™‚

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8 thoughts on “When life changes…

  1. No one can describe it as beautifully and as accurately as you did !
    I would say that was a lifetime experience for me as well where i realised that how much blessed i am .
    While i was reading such an amazing description, i realised that its true ,sometimes we tend to take our valued relations for granted but all thanks to you bhavya πŸ™‚ for giving such a meaningful insight and outstanding message…lots of love πŸ™‚

  2. More power to these brothers! To remain optimistic in such trying times is something which requires so much courage. Who says strength is only physical?

    The fact that you are still on contact with the book-loving brother made me smile Bhavya! πŸ™‚ I would love to read more such posts from you.

    One question- what are the causes of this FA disorder? Are there any preventive measures?

    • Thank u so much Aakriti..☺️
      And i’ll try sharing as many cases and personal experiences possible…
      And Freidreich Ataxia is hereditary…i.e recessive inherited disease..Its due to a particular gene/chromosome.There is degeneation in the spinal chord which is one of the main centres for commands. And it leads to issues in motor coordination,stability,balancing etc…
      Physical exerices and physiotherapy is done with them. Also some medical interventions can be done. After a time the patients use wheelchair… Same is the case with these 2 brothers… The wheelchair is now the part and parcel of their lives….

  3. It was truly heart touching and in a very simple manner made us realize the importance of people around you,who care for you and without any expectations- like family. Thank you bhavya for sharing this story. I really feel blessed and i wish them all the love and care they require.☺️

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