​Saturday was wonderful! The weather was fabulous, the temperature, perfect, and to top it off my friend from high school, Dennis and his wife, Ann, flew in from St. Louis to spend time with me. Dennis and I went through the electrical engineering program together at Southern Illinois University.
 
Dennis's family took me in. I have many memories of playing flashlight tag with Tim and Denise, Dennis's younger brother and sister. The greatest gift Dennis gave me was treating me like a friend. He didn't treat me like some weirdo kid who was obviously "not from around here ". I am happy to report he hasn't changed. When he visited me this time, he treated me like Akhil, not Akhil with ALS. I absolutely love him for not letting ALS define me!
 
We were (are) uber-nerds, complete with playing Dungeons and Dragons for hours on end. Yes, we lived up to every cliche except one, both Dennis and I were off-the-chart extraverts. We have never met a stranger. So we had a chance to catch up on past friends and weird people that we have known.
 
Neither Dennis nor Ann had spent any time in the Northwest before. We took advantage of the afternoon weather and took them to a nearby winery. Laura, Ann, Dennis and I all laughed at the antics we perpetrated in our youth. It was so much fun that we lost track of time. The afternoon turned to evening and the winery was closing for the night. We went back to our home and we did what everyone does, we had that awkward moment when you knew it was time to say, “Goodbye”.
 
Just for the record, I hate that moment! There is a level of sadness that accompanies the word “bye”.
 
As I went to bed I replayed the day’s events, still smiling on the inside, that is, until I got to the "bye”.  I had an epiphany. I was so excited I couldn't wait to write this post.
 
I was analyzing why I feel sad when I hear “bye”. The reason is there is a finality to "bye”. 

When I was growing up in an Indian household, we had a custom of not saying, “bye”. Instead the women would say, "Yeh They”, and the men would say, "Yeh Though”. It literally translates to "I am arriving" as in “I will be returning and this is not a final leave I am taking”.  In English we say "until we meet again".  It is a bit superstitious, never saying “bye” because it is too final. Yet, it is an uplifting sentiment that leaves everyone with hope of seeing one another again.

I can still hear Uma, my sister, saying, "Yeh They Ah-ee" (Ah-ee means mom) or "Yeh They Doofus" (Doofus means brilliant brother, that is a loose translation).
 
If you come over for a visit say, “until we meet again" as you are leaving instead of saying “Good Bye”.  Or if you want to really impress me, say the gender-specific version of the phrase with a slight Indian accent. As a matter of fact, you might try this with visits with other people too!
 
Yeh Though

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. 

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. 

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.

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.

​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.

​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: