Me and ALS
  • Home
  • Akhil
  • Laura
  • About Us
  • History
  • Help!
  • Health Update
  • Videos

Pain is Relative

8/1/2016

1 Comment

 
Picture
My daughter, Corinne, shared some thoughts with me and I thought they should be shared on my blog.

Something that I've really been working on grasping and living by is that PAIN IS RELATIVE.  The most difficult thing someone is experiencing could seem small to you but they haven't dealt with anything that hurts more so they FEEL the same.

Picture
​I saw this analogy; of a grown wolf and a baby, side by side. The grown wolf had several arrows in its back, bloody but still standing. The baby had just a single arrow stuck into him, and was lying there dead. Some people can handle more than others, but that doesn't mean the hardship means any less.
I have such a hard time trying to talk to people about what im going through, because most think they are helping by trying to relate to my pain by something theyve been through.
Unless youre in my exact situation, you will never understand. 

This is my hardest thing, that was yours.
At the same time, I don't want people to think because i have my own things going on that they cant talk to me about theirs.  
For instance, the other day someone was having a really difficult time and told me their parents were getting divorced.
I could have said, so? I've been watching my dad slowly die in front of me for the past 4 years.
But that isn't the way i think.
I say, "Wow, this must be so hard on you. I am so sorry.. i cant imagine what you must be feeling. Its hard to stay strong in times like these but i believe in you, and i know you can make it through this."
That should be enough.
That is how i would like people to talk to me. Also, ask questions, DONT make someone elses pain about you.
I hate it when people are like, yeah i knew someone with ALS too, and try to relate like that. Its not the same when its your dad. And the story usually ends with "They died."
Even though thats the obvious end, no one wants to hear that!
I need love and comfort, dont try to make my hurt seem unjustified, because that is what trying to relate to me feels like..
If its your opinion that a fathers sudden death is harder, or that cancer is harder. I respect that, but i do not agree. I don't know what that feels like though, so i understand that not everyone will agree with me.


Picture
​If i could vent i would say that the hardest thing is how you grow up with a man who does EVERYTHING for you, who you see as so strong, can fix anything, emotionally and pbysically. My dad was crazy and loud and upbeat and hilarious and loved adventure.
Imagine being that energetic and outgoing, wanting to say and do so much, but being trapped in a body that doesnt let you. I cant. But my dad cant move, or speak. It wears on us all. Its hard on me because he used to tie my shoes, now i put his shoes on for him. he used to feed me and cook for me, and before he lost the ability to eat, i was feeding him. This role reversal has been so hard for me. Watching my role model, my strong, capable father, wither away in front of me.
He needs so much from us.
About the same amount of time needed when youre taking care of a newborn baby.
I feel like i have been awesome at staying so positive, it helps our whole family when we act like everything is fine.
But the other day, I watched a video my amazingly talented older sister had made.
Hearing my dads voice again, and the happiness in my older sisters voice, just broke my heart.
I dont often think about details of how things were, but i just cant believe how things are SO different now.
Now, We're all so sad deep down, really just masking it, distracting ourselves, getting through each day, pretending like we're all okay.
We didnt used to be so sad. I think thats what got me in the video the most too. Ashley was so adorable and bubbly and i know how sad she must have been to have made that video.
In the end, my dad says "ashley are you okay?" And she replies, "i dont know"
And i try not to cry, i try to stay positive, but sometimes you just lose it for a while.
And then people try to tell me to cheer up? To cherish the now? Like do you see me?? I usually am. Let me have my breakdown, be there for me but dont try to change how i feel.

Ashley's video is here: 


1 Comment
Patty Watkinson
8/1/2016 11:36:20 pm

Thank you for sharing this Akhil ( and for being honest and open Corinne ) I have no words except I love your family dearly and pray constantly for you. All the above is true and absolutely nothing can describe what you are going through. I pray first for healing miracles! and that Jesus will wrap each of you in his loving arms and give you what you need to get through every single day... Love You All !!

Reply



Leave a Reply.




    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!

    Archives

    September 2018
    August 2018
    July 2018
    April 2018
    December 2017
    September 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    January 2017
    December 2016
    November 2016
    October 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    April 2014
    March 2014
    February 2014
    January 2014
    October 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012

    RSS Feed

    Enter your email address:

    Delivered by FeedBurner

    About Akhil

    His journey is described in the "ALS and Akhil " tab

    HTML hit counter - Quick-counter.net
Powered by Create your own unique website with customizable templates.