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“Not Alone” – A Daughter’s Perspective

Jordan Jhaveri is part of a family living with ALS. She was eleven when her dad, Akhil, was diagnosed in 2011. Here she gives her sixteen-year-old perspective that was recently posted on her dad’s blog recently.

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.

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Jordan Jhaveri

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.

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.

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The Jhaveri Family

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.


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3 comments

  1. Oh my goodness young lady!! I am twice your age and can totally relate to every single word you have written!!! Thank you so much for having the strength to put it all in writting what my heart and mind have been screaming for the last year!!! Thank you so much for sharing!!

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  2. You remind me so much of me my brother has ALS he is 47 I know how you feel so we must not give up just enjoy him while we can let’s continue to be strong for our loved one God bless us

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  3. I am sure many of us can relate in some way to what you are saying, whether it be due to ALS or any given illness. What I was struck by is your ability to express your self in a manner of an artist. While everyone may have a story to tell, few can do so eloquently as you. Whether your father has one or one thousand days write about them, I for one would enjoy reading them! My uncle was diagnosed 6 months ago today and I’ve dug desperately to read, learn, examine what to expect, what happens to everyone involved! Thank you for sharing your story and it’s my hope it won’t be your last. God Bless you and your family❣

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