GIVING BACK!

Words from Samime!

Recently, I was having a conversation with James and I told him I finally have figured out life. He asked what I meant. I think most of you all know I am Turkish, Muslim religion.  (Definitely, not a great Muslim but I stand by it.).   James, a Catholic who hasn’t been to church because of our circumstances, but definitely believes and is very much about giving back.  Both of us have been through a lot with Derya being sick. Our lives have changed in ways we would have never have dreamed possible.  

I told him that this life is not ours.  It is God’s. God gave us life and He expects reimbursement for that life.  Forever, while you are able, it is your duty to give back, to help people, to help those less fortunate.  It is our job to give more than we take, and to feel joy from spreading love and good will.  Our rewards are plenty.  Our children are home, safe.  A roofover our heads and our ability to think to solve our problems.  He said that is a very Christian view.  I only thought of it as our view.  I did not think about any particularreligion.  To me it does not matter, whateveryou believe, in the end it is about this. You are here as a gift from God, hewants his dues.  Give it back to him.

A Path to Giving!

That was from Samime late Saturday night.  I was half asleep, ready to drift into the other half of sleep.  At the time I read what she wrote and knew that it would go into this week’s post.  I decided I needed to give a little more.  Not because what she wrote needed it, but because I needed it. 

John Donne said: “No man is an island”, the rest of the quote goes: “entire of itself: every man is a piece of the continent.”  Which makes sense.  We are all one piece of a larger community.  I can see this as I look across the various groups on facebook that have sprung up over the last four years.  As awareness of this disease spreads, so do those that wish to help or those that seek help.  We all end up in both categories at differenttimes, sometimes at the same time.  We know this simple truth that Samime has stated so eloquently.  It is our purpose in life to reach beyond our“island” and help the rest of the continent or community. 

Finding Solace

Some find solace in meditation, others find it in a form of yoga or mindfulness activities while still others seek the comfort of prayer and a relationship with God. There is no better way to find that peace, but the best way is the way that works for you.  A universal truth is that in order to help our loved ones, the day to day grind of caring for the more fighting for their rights requires that we have that inner peace, that regeneration of our energies so that we can get up and face the day. 

To you, from us, we welcome you to the continent and hope that your island joins with us in making the world an AE friendly place; a medical community that accepts, understands and appreciates how to deal with AE and provides the treatments to save our families.  This isn’t a fight to save one member of it, but all of us as this disease destroys not just one life, but the families!

ABOUT US!

James Baldini blogs about his daughter’s care and the tragedy that has surrounded the entire family of Derya Demirtas.  Derya has had Autoimmune Encephalitis for nearly four years now.  The young advancing, brave and stalwart young woman Derya Demirtas, has suffered much throughout that time.  As has her family and friends.  In someway we hope to see a change within the medical community so that it may better adapt to this disease and prevent future generations of victims.

You can read more from James Baldini @  www.JamesBaldini.com

#FreeDerya #JamesBaldini