Me and ALS
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Does it matter?

1/15/2016

5 Comments

 
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In “The Death of Ivan Ilych" by Leo Tolstoy, the main character, Ivan, asks, as he is lying on his death bed, “What if my life was wrong?”   
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What a horrible question to contemplate when time is up. How much better to contemplate that when there is still time to address the issue!  I posed a similar question to Laura in early October. 

I prodded her to tell me whether or not my life mattered.  I knew my time was drawing to a close and I wanted the love of my life to help me make sense of my existence.   Little did I know that I had pressed the launch button and Laura, in typical Laura fashion, took off!

Laura took it upon herself to make sure that I knew that my life mattered.  She got to work planning the most spectacular surprise for me.  I am sure she put in many late nights and countless hours planning just to show me the answer to my question.

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On Sunday, December 13th, I had the surprise of my life!  Thinking I was attending an over-the-top Christmas party hosted by a friend, I was decked out in my tuxedo prepared to celebrate the holiday. 

Little did I know, I was the guest of honor, but that was quickly revealed as I entered the venue and all the guests greeted me with shouts of “Surprise!” followed by a festive rendition of “Happy Birthday”.

I was shocked!  I could barely control all the emotions I was feeling and couldn’t help but cry tears of joy at seeing so many friends around me!
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As the guests quickly took their seats, Laura began a presentation that would shock me and bring me to tears over and over.  Laura walked everyone through the story of my life, the places we lived, the jobs I had, giving people a picture of where I had been.  The girls and Laura followed that up with a fantastically funny skit going back through the highlights of my life.  All this was to prepare the audience for the parade of guests that were about to enter.     

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Laura had connected with people from each phase of my life and over thirty people felt compelled to travel from all over the country to help me celebrate my 50th birthday!  As the party continued, each guest who traveled in was introduced as they chronologically related to my life.  Of course, the story began with my mom and my sister. 

​They were followed by guests from my childhood in St. Louis, my early years as an engineer, from our first time living in Texas, as well as our most recent stint there.  The entrance of each guest was a surprise to me!  Each one proceeded to the microphone at the front of the venue. 

​Laura had asked each one to prepare some thoughts about how knowing me had made a difference in their life.  I had no idea my life had made such an impact!  What a wonderful birthday gift to receive - knowing that my life had mattered! 

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Perhaps if I didn’t have ALS, Laura would never have thought to have such an amazing party to celebrate my life.  Perhaps, people would not have flown in from all over the country. The people who traveled here for the party, knew the pre-ALS Akhil.  They celebrated the impact that person had on the world.  My girls got to hear stories about a dad they either never knew or barely remember. 

There were also a lot of people in the room who didn’t have the opportunity to speak.  Those were the people from the Vancouver area who have mainly only known me as an ALS patient.  Even though for some that is the only part of my life they know, they still came to let me know that I continue to make a difference.  I know that because they wrote me wonderful notes to that effect that my wife is compiling to print in a book for me.  

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I share this with you because life is a journey that entails entangling our lives with the lives of others.  Sometimes we cannot tell how intertwined we have become.  I was blessed to be able to see it through this outpouring of love. 

​While you may or may not ever see it as I did, I am confident when I say that you are making a difference and your life matters.  I know because that is, and has always been, God’s plan for each of us.  Whatever you are facing, keep forging ahead.  Each day of your life matters.  

This is the video that was shown at the party, made by my wife, Laura.  She put in countless late nights secretly compiling pictures that would summarize the life I have lived, from when I was just a child all the way through last year!

5 Comments
Janet
1/15/2016 04:19:44 pm

Frame 12 is the time when I met you back in Cahokia, IL

Reply
Sue Simons
1/15/2016 11:22:52 pm

As I clicked on the site from facebook and started reading, at first I feared that ALS had finally won over the amazing spirit that Akhil has. I'm so grateful to know that this isn't the case!

Reply
Patty Watkinson
1/15/2016 11:25:59 pm

What a tribute to you my friend ! We were so bummed we couldn't be there but were there in spirit for sure. Love You and keep you in prayers Always !!

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Trudy Schmidlap
1/16/2016 12:12:45 pm

Akhil, you have touched so many by the way you've lived your life before and since ALS. You are such an inspiration to all of us. Laura, the video you made is priceless! It's something l'll enjoy watching over and over again! You continue to be in my prayers 🙏🏼 !

Reply
Lynn Devereux
8/12/2017 10:34:02 am

well-lived; well-loved...You matter!

Reply



Leave a Reply.




    The video is Akhil's journey with ALS.  Painful to see but the faith his family shows is uplifting.
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    God continues to show his love for us through his people.  Thank you to everyone who has reached out to us, prayed for us, visited Akhil, brought us a meal and served us however God led you to serve.  Continue to follow those urgings from God in serving those who are struggling.

    Picture

    Akhil and Laura Jhaveri

    Applying the skills they've learned in over 20 years of marriage, this couple faces the challenges of ALS together. MND or motor neuron disease is deadly with no known cure.  The Jhaveri family has to endure this battle and show the world God's love!

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