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You're Not Alone!

5/11/2015

7 Comments

 
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I debated about writing this post.  It is inspired by a very personal incident; something I would prefer to keep secret between my wife and me. 

 I am writing about it because when I went through it I felt embarrassed and alone.  I realized perhaps I could make a difference for other people who may experience similar awkward situations.

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Let me tell you what happened.  I have ALS and it kills my muscles.  In the beginning, my legs and arms were affected first weakened by the disease and eventually rendered virtually useless by it. 

I expected that; however, I didn’t expect it would affect the muscles below my waist which leads me to my story.  It was Saturday morning so Laura was taking care of me.  I was in bed when I felt an urge to go to the bathroom.  I told Laura that she had plenty of time to get me to the bathroom.  I was wrong! Terribly wrong!  My body betrayed me and I went to the bathroom in my bed.  I was mortified! 

Laura had to clean me up.  All the while I was feeling so humiliated; I could not stop crying.  I was watching Laura calmly clean up the mess that I made and thinking this is not how things are supposed to be.  I thought that later in life, I would be taking care of her!  I felt all alone.  I felt helpless.  I felt defeated.  

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Laura said, ”This is no big deal.  I did this with our children.” Then she wiped away my tears.  After she cleaned me up, I felt really uncomfortable because she put a diaper on me.  

Let me tell you what went through my mind.  Thoughts of control and power went through my mind.  I have been a manager of other people. I helped many people and they depended on me. I have reached a point where I have lost all control and all power.  

Right now, I was not anything to anyone.  I have had enough humbling! 

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Then Laura asked me, “What are you thinking?”  I told her, “I’m done!” as in, I am ready to check out.  Then she made me laugh.  Imagine that!  She made me laugh by saying, “Remember, ALS is going to take your life by taking away your breathing; pooping is not going to be the end of you.” 

I laughed.  Laughing softened the moment, and the more I thought about it, I realized I had not done anything to be embarrassed about.  Embarrassment should be reserved for those moments of bad judgment when you could control what you did or said but there is no cause for embarrassment when something is out of your control.  I am doing the best I can.  All of us are doing the best we can.   

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I am sharing this story because, while it is quite personal, I don’t want you to ever feel embarrassed and alone in your suffering.  No matter what you are walking through, someone has walked that same path before you and others are sure to follow.  

The Enemy always wants to isolate us so we feel alone. It is important that we share our experiences to let others know that we are not alone.


And surely I am with you always, to the very end of the age. 
Matthew 28:20

7 Comments
Cheryl Aston
5/11/2015 10:17:34 am

Thank you for blessing/teaching/encouraging as you are on this journey heavenward!

Reply
Bo
5/11/2015 11:34:07 am

This is brilliant, Akhil and you are brave and wonderful for sharing it! I love you and that amazing wife of yours...so much! -Bo

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Landis Epp
5/11/2015 12:04:43 pm

Thanks for your transparency Akhil. What a gift to let others know of some of the very common struggles of our ALS pals. What an amazing tribute to the marriage vows you and Laura took "in sickness and in health. . . Always wondered why not the other way around? Rather deal with "health" than the sickness part! So glad for our HOPE for a wonderful home without any of that SICKNESS!

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Susan Jeep Jones
5/11/2015 12:53:49 pm

Akhil, you never cease to amaze me and so many others! Thank you for sharing so much of yourself. I wish I could do as much for you as you do for all of us. The same is true for Laura. She's one classy lady! You are always in my prayers - I'm still believing!

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Linda McNeley
5/11/2015 02:56:50 pm

Thank you for sharing something so very personal. You give us all hope that we can face another day no matter what we are going through. Much love to you, Laura and the girls; a truly inspiational family!

Reply
Sue Simons
5/11/2015 03:04:38 pm

Thanks! I've told my family that when I get to the point that I can't wipe my own bottom to just put me out of my misery! I guess I'll have to revise that! :)

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Phil Camden link
5/11/2015 06:59:19 pm

Hi Akhil.

Thanks so much for sharing your life and wisdom with us. It makes our life richer. Love you mate and your wonderful wife, from Australia.

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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.

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    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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