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

Not Alone.

8/14/2016

4 Comments

 
Picture
My daughter, Jordan, wrote this post to share on my blog. 

As my dad's health declines it's gotten a lot harder to "keep on keepin' on." I've decided to share my perspective so that maybe other people can know they are not alone in their battles. 

No one is truly "put together." No one actually has everything "under control." I am convinced that life is a big card game in which it is part chance, part strategy and planning, and we make up all the rules as we go. Even when someone seems to be completely untroubled, there is no way to know what happens behind closed doors. 

Okay so in case it wasn't obvious, I am not at all put together in nearly any part of my life. I've made mistakes and done things I'm not proud of.  I fought with depression at a time when I pushed everyone away and wouldn't talk to anyone about anything that was going on. "You don't have to do this alone" was said to me countless times but it was never a statement I believed. I felt like there was no one who would understand, and that people might think I was being over dramatic, making way too big a deal out of everything. (I still feel that way sometimes.)  

I made some friends who pulled me out of my hole, and for a while all seemed okay. 
​
Then things got worse, and I didn't know what to do again. So I took the first escape route I saw. It came in a bottle and it tasted bitter, but it made me feel better. After a while you don't even feel the burn. My friends all watched me tumble deeper down than I was before. They said I was an alcoholic, that I needed to stop. I finally did, and it was a battle and it was painful and it sucked, but I fought that battle and won.

Much more recently I fell into this incredibly apathetic state. I just didn't have the energy to care, I convinced myself I didn't have the time. Keep everything buried WAY down deep and you'll never have to deal with any of it ever and everything will be fine! Turns out that doesn't really work. Because as soon as any sadness peeps through you breakdown to the point that you're crawling in your bath tub sobbing while attempting to calm down with a cup of tea. Not that that's happened to me or anything.
 
I am trying really hard to actually deal with all the stuff that's going on but it's harder than I originally thought. There have been so many sleepless nights that I stay up and just think; they have been cooking me raw. There is an incredible heaviness that goes along with situations like these. I know I shouldn't cry because I'm losing my dad; I should be happy I still have time with him! (Not That Simple.)
 
I make mistakes and I know better but I'll do it anyways. I always give what I can. Sometimes I don't try at all and sometimes I try way too hard. But the main thing is that, as a human being, I lose my way. I forget where I am going, what I should be doing. I get distracted easily and I chase things I shouldn't. I stay when I should have already left, I leave something good because I get too scared it might turn into something real. 

Picture
Almost anytime something reminds me of my dad, I'll cry. He's still here but things are so different it gets too painful to think about the way things used to be. I am in no way a fragile little bird who needs to be coddled; in fact I will be extremely insulted if you treat me like I am. But sometimes I break. Sometimes I get to a point where I have been stretched so much on an emotional level my soul hurts.

I get so angry at everything. The world, the doctors, God. And the silly thing is, I know I'm angry at things I cannot change. No matter how many other problems I can solve, this is one area where Jordan Jhaveri can't save the day. And it really, REALLY sucks.

It is easy to lose faith when you're so lost. I know I have! (Sorry mom&dad.) It gets pretty infuriating to hear the phrase, "Your whole life's in the hand of God." Like it physically hurts. I just want to scream. How could this ever be a part of anyone's grand plan? Who actually CAUSES this kind of a thing to happen? I don't WANT my whole life in his hands-that sounds pretty horrifying if this is how he treats his people! It takes every ounce of my being to remember that this is not God. My parents taught me that God is good, he gives and he takes away but he is always there, and most importantly that God is love. I choose to believe that.

 
Sometimes we stay in unhealthy places because it is the easiest solution and it feels safest. Sometimes it even feels like there's no alternative-- but there is. There is always someone who is going to be there for you. Sometimes it's as simple as having good friends who don't expect anything from you, who cultivate a healthy relationship, and who truly will be there for you to just listen. Sometimes it's a little more complicated and you just gotta trust that God is going to see you through. To me that is terrifying, probably why He has supplied me with so many supportive people in my life !
 
I am not super strong in my faith, and I understand not everyone believes the things I do or even has a religion at all. However, I firmly believe it's important to have some sort of faith, or at least something to believe in. (Not other people. People let you down.) Faith gives you hope, and hope is a superpower. It gives one the ability to continue on, it supplies strength when it makes more sense to have none, it is the light at the end of the tunnel. Without hope we are lost. If we believe tomorrow will be better, we can bear a hardship today. It is my opinion that hope is the single most powerful emotion a person can have.
 
Things get .... "crappy" in the game of life. Sometimes you're dealt a king of hearts, sometimes an ace of spades, and sometimes a ten of clubs. It's all random; you can't plan what cards you get, and you definitely can't plan the cards that are given out! But the thing I'm learning is that there is always someone there for me in this crazy, confusing game we call life. I believe that is true for everyone. It might be really difficult to see who is there for you, you might have to go meet new people, you might find sanctuary solely in your faith. But someone is there. Because of that, life can beat me down and try to ruin me. It can take away one of the most important people in my life, it can dangle everything I hold dear over my head and threaten to destroy it. But I am not alone. I will always get back up when I am down. I am stronger than this challenge. There's a really killer reason, too:
                     I am a Jhaveri.
                                      And we are RELENTLESS. 

Picture
Oh P.S., 
Don't get me wrong, I fall apart a lot. I have to take breaks and be away from people for a little bit while I gather myself. The important thing is that we get back up and keep fighting. You can't fight a battle on your knees, you know? 
 
P.P.S.,
I really struggle with being super open and honest about my feelings and all that stuff, it really isn't my area. Music kind of picks up where I leave off, and so I felt it would be best if I just interpreted a song that embodies everything I'm going through. It's a bit long and kind of repetitive but it's how I figured out what to say.
4 Comments
Paula
8/15/2016 07:21:14 pm

So well written. Thank you for sharing.

Reply
Landis Epp
8/15/2016 08:01:22 pm

Love the Psalms as David is so honest with the ups and downs of his emotions. We all have them, Thanks for the honesty of your post Jordan. Remember that "tears are the price we pay for the privilege of loving!"

Reply
Doug Findlay
8/15/2016 08:58:30 pm

Jordan, thanks for sharing, being transparent and honest. It takes a lot of courage to write about your experience. It's raw, it's real and it's where life is lived. Keep sharing and believing and living out your faith.

Reply
akbar
12/20/2016 11:27:06 am

I have been following this blog for a while now and i decided to share my story on how i survived and got a cure from ALS which would have maybe by now killed me. I was diagnosed with ALS in 2013 and it came with symptoms like overall weakness and i could not swallow and i ended up in a wheelchair though my doctor tried to put me on occupational therapy and physiotherapy but none seemed to give a relief as my condition grew worse in 6 months. I was lucky to have contacted Dr. Joseph and used his herbal medicine that treated me and gave me life, just 3 months of using the medicine which spans for 6 months positive improvements were visible, like my speech, all movements. A few years have gone by and i am still very much alive and healthy. Do not give up, you too can get a cure you can contact him directly on the contact below (josephalberteo @ gmail. com) for advise and effective solution. I pray you get cured soon.

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.