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Surprise!

1/20/2014

15 Comments

 
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June 2011 -  It was night time and my left arm was twitching, kind of like sometimes when your eye twitches. It was annoying but I knew it would go away. Two weeks later it hadn’t stopped so I went and saw my neurologist because I had MS and I thought this was just another flare up.

My doctor said, “MS attacks the central nervous system. What you are experiencing is a peripheral nervous system issue.” I asked, “What does that mean?” The doctor replied, “You need to go see a specialist. Her name is Doctor Goslin.”  





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July 28th, 2011 - after meeting with Doctor Goslin for a month, she told me that she suspected that I had ALS. Surprise!
I had just met my Goliath. He walked into the room and threw down the gauntlet. He dared me to pick it up and take him on. 

Fast forward 2 and a half years. My health has deteriorated. My speech is barely intelligible. I’ve lost the ability to feed myself or even take care of the most basic hygiene needs. I’m relegated to a power wheelchair whenever I’m awake. I need to be turned in bed throughout the night because I can’t even move myself. Many times I have wanted to quit, end my life. To basically stop being me. I’m done….. I have contemplated using Death with Dignity (DWD). It seems like the best thing to do.  I’m getting more broken…

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A young mother wanted to encourage her 5 year old son to learn the piano. A polish composer was coming to town. He was a master composer named Paderewski. In order for the mom to encourage and inspire her son, she purchased tickets to the performance.

 The evening came and they went to see the great Paderewski perform. After they found their seats, the mom spotted some friends. She turned to the son and said, “Wait here, I’m going to say hello to some friends of mine.” The moment the mother stood up and began to walk towards her friends, the boy wasted no time in looking for something to do. He found that something in the form of an exit door.

 The lights dimmed and the mom came back to her seat only to find that her son was gone. She was looking around for him when the curtain opened up and on the stage was a grand piano with lights on it.  There for all to see was her 5 year old son playing twinkle twinkle little star with one finger. Obviously, the mom was aghast. 

When Pederewski came walking out behind the boy, the boys first inclination was to run off scared but Pederewski quickly told him, “Don’t stop playing. No matter what keep playing.” Then the master put one arm on each side of the boy and played a counter melody. Together they made the most beautiful music. Music that enthralled and impacted the entire audience. When they were done, the little boy received a standing ovation. 


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How does that relate to me and my struggle with ALS? Don’t you see? I’m playing this broken music. I want to run away and just stop. But then I hear the master saying, “Don’t stop. Don’t quit playing.” He puts his arms around me and together we play the most beautiful music.

When it is all said and done, we will have created something that will impact the world. And who knows, it might even be worthy of a standing ovation. You never know what kind of impact you will have on a world that is watching.

For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.  Ephesians 2:10

15 Comments
Fuzzy
1/20/2014 07:09:33 pm

Hey Akhil,
Hugs.
I'm not sure how this will be perceived. With all our Divine Love... please watch "Ashtavakra Gita" discourses by H. H. Sri Sri Ravi Shankar... there are 33 tapes.... each an hour long...
Ask anyone at an Art of Living Center near you.
Love ya
Love to all around you. Bless.
Fuzzy

Reply
Akhil Jhaveri
1/21/2014 04:14:29 am

Thanks I'll check it out, I've heard of Ravi Shankar. Thank you!

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Susan Jones
1/21/2014 03:40:26 am

Well said Akhil! Your faith is impacting so many others! None of us knows what will happen tomorrow, but God has you in his warm embrace and continues to use you in the midst of ALS. I'm glad you're still able to share with us and I'm still believing Akhil!!!

Reply
Akhil Jhaveri
1/21/2014 04:16:33 am

Keep believing and reading, I'll keep righting and inspiring.
You know you can fly out to meet me, I'd love to see you.

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Carolyn McCord
1/21/2014 03:44:45 am

I once took a class from Akhil when you were attending The Church of Christ. I loved his humor, and admired his intelligence. It is so hard to see what he and the rest of the family are required to do.
But then I see something else. I see the family that loves him, I see that he still has his intelligence, and I see his faith in God. I know that you have indured a lot but you have so much more that so many are missing out of..And your trials are touching a lot of people that you don't even know about.in many different ways.

Reply
Akhil Jhaveri
1/21/2014 04:20:15 am

I have heard that I am touching many people, I would sure like to know how I am touching them. I am rather isolated here and the comments from the blog are my only means of communication.
If you could encourage others to write that would be wonderful.
Akhil

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Harrison Taylor
1/21/2014 04:54:06 am

Love you, Akhil! It's so encouraging to read your words. Thank you for being brave enough to share with us.

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ann breuer
1/21/2014 05:06:12 am

Hi Akhil,
I live in Wisconsin and my sister-in-law is Patricia Helms, through Mike and Patricia is where I first heard about you and the impact you have had on their lives, they truly feel that God was working through you to help them relocate to the great state of WA and back to Patricia's family and her dream job. Your confidence in her is what made this happen for them, we give you many thanks for that gift.
I have often heard your families name mentioned in admiration as your Faith is demonstrated on a daily basis as you deal with your ALS diagnosis, I have read your blogs and been brought to tears on many occasions. I have questioned myself'' would I handle the same diagnosis with such grace'', I witnessed my dear Mother when diagnosed with terminal ovarian cancer display the same courage and grace that you are demonstrating now and I admire you and your Family so much, that Akhil is how you are touching me..God's Blessings to you and your Family, I keep you in prayer.. Ann Breuer

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Akhil Jhaveri
1/22/2014 04:33:12 am

Ann,
I'm happy to report, God blessed both Patricia's family and mine when she accepted the job. As a matter of fact, Patricia and Mike are coming to my house Sunday for a Bible study! We maintain our friendship even though I'm not working anymore.

Please keep reading the blog, Sharing it with others, and keep commenting!

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Phil Camden link
1/21/2014 06:51:29 am

Hi Akhil.

I was a pastor fo0r many years and now have ALS or MND known here in Australia. Thank you for your testimony, faith and openness. I can imagine its only getting harder to stay seated "not quite playing" as today will be the best day you have when it comes to ALS, your piano playing will only get worse not better. BUT as we know thats when His hands become even more precious and tangible. I feel for you my brother and pray for you today for the strength and courage you need to continue to be the great inspiration you are. Thank you. Your blog and others inspired me to start one as well, "fridayswithphil.com"

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Akhil Jhaveri
1/22/2014 04:27:26 am

Phil,
I read your comment, I have a few questions. When did you get ALS/MND? Also, what functionality do you have? I'm able to speak so a trained person can understand me. My trained care giver does all my typing and everything else for me. He moves my body parts (arms, legs, fingers) I can see well and hear. I also possess an excellent memory, so my mind is always active!

I am wondering where you stand with all the healing promises in the Bible? Reading the book of Mark, how could we not believe God's promises to heal those of us who stand in faith? Please let me know your thoughts. I have had ALS since 2011 approaching 3 years and I'm still believing for healing. It is what's keeping me going.

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Fr. Abraham, Varghese
1/22/2014 12:08:50 am

Hi! Akhil the David in front of golliath:
It is a great inspiration to all of us. Your life is a witness. Yes! You know I have no bones not broken and continuously blessed with pain just to keep on remembering the essential things in life on earth. Yes! You are inspiring me and many others to thank God for the blessings and live gracefully. Yes! You are taking gracefully the golliath. Continue to pray for you and our family. God bless!

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Barb Shaffer
1/23/2014 11:58:40 am

You are true courage, transparency and vulnerability..... more alive Akhil, than so many whose fears keep them from this risky business of becoming real. I look forward to these weekly "visits" and the conversations they inspire. Your smile has always been an encouragement to me:-)

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Dan
1/24/2014 03:32:33 am

Hi Akhil,

I just wanted you to know that your old men's bible study in Carrollton is thinking about you as well. I share your updates with the men from time to time. I also fondly remember our old conversations and debates on Friday mornings. I hope you treasure them as much as I do.

Dan

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Kim Townsend link
1/27/2014 03:27:16 am


Hi, Akhil!

Wow! I don't know where to begin... I guess that I should introduce myself: My name is Kim Townsend and I currently live in Rockwall, TX. I met your sweet, sweet sister, Uma, via my dear friend, Greg Arp - who has been the theatre director at Plano Sr. High where your nephews have gone to school and performed.

*phew!* That's a twisty path, eh?!

I hope we're on track: me > Greg > nephews > Uma > me > YOU!

I used to be a professional singer/songwriter but now am full-time caregiver to my brother, Clint, who also has ALS. In addition, I became an "instant Mom" (just add water!) to my (then) 12-year old niece, Emilie, who is now 14 1/2... going on 21 (she thinks).

I could go on and on about what an incredible man my stinky brother is, but let me, instead, just stick a link on here that will take you to the bio I wrote for him on the ALS Walk site:

http://web.alsa.org/site/TR/Walks/Texas?team_id=267734&pg=team&fr_id=9250

Uma has valiantly tried to get Clint and I to connect with you and Laura for MANY months, but I couldn't seem to bring myself to go to your site. I guess I knew that it would break my heart, and it did. To know that, yes, someone else really IS going through this, too, that their world has been rocked to its foundation, that "The Plan" has changed... it's overwhelming to conceive of and absorb, let alone accept. Like y'all, however, we are Christians, and our faith is unscathed... despite the obvious disappointment of dreams unfulfilled and a diagnosis with the power of a wrecking ball.

I don't want to write EVERYTHING in this initial note to you, but I did/do want to make contact and (hopefully) strike up some conversation(s). I know that you, Akhil, have much in common with my brother- even aside from the disease; as do your bride and me. By the way, I used to live in Seattle where I released my first CD, and have toured/traveled extensively throughout the Pacific Northwest. I MISS IT terribly!! I have to admit, though, I'm a Texas girl at heart (we were born in Lubbock)... so it's good to be home.

I'll go for now, but want you to know that I'm out here...thinking of you... understanding you (as best as a non-ALS person can)...praying for you and your family. I'm glad that Lori is there today (Monday, right? Hi, Lori!!) and hope that y'all have an opportunity to read through this. I don't know when your next doctor's appointment is, but we will most definitely keep you in our prayers for a static report - NO declines!!

I don't know you/y'all (yet), but I love you, nonetheless.


Take care, and God bless you, Akhil.


Kim

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    The video is Akhil's journey with ALS.  Painful to see but the faith his family shows is uplifting.
    ​
    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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