​I wrote a letter to my daughters last month. I was pleasantly surprised with Corinne’s response. When did my daughters turn into amazing women? I think I missed it thanks to my career, but now I have been given an opportunity to get to know my family, really get to know them. I will not miss it again. Yeah ALS!
 
Corinne’s response:
 
Dear Dad,
 
Here I am trying to study but thinking about you after those wonderful words of wisdom. I just wanted to say that despite my incredibly busy schedule and preoccupied mind, I never stop thinking about you. For some reason, I keep remembering the days when you would travel all the time and I would miss you so much and write to you or my diary saying how much I missed you…I wish I knew where those notes were! I’m sure I kept them. 

Anyway, as usual I teared up after reading your words, mostly about the dance thing. My whole life I’ve taken things for granted, but I never thought I’d regret not dancing with you more. My mind goes back to the cruise before you were diagnosed with ALS, where Ashley and Jordan danced with you at the captain’s party but I was too embarrassed for some reason. I was always too embarrassed. Like why?
 
Advice to myself: Life is far too short to be concerned about what others think. Never ever let that get in the way of pursuing what you think will make you happy, as long as it will make your heart happy. 

There are rough days when I try to recall our good memories but struggle to remember exactly how things were, like how your voice sounded. That makes me feel sad, but I will never forget your laugh! I have it in my head and it makes my heart happy.
 
I absolutely love that you did laughter yoga because I can just see you jumping around and being so energetic and spreading joy to everyone around you. I don’t know why I was embarrassed about this too.

​I look back on times like these and think, who even cared but me? Who judged me, besides me?? And the fact that I’ve forgotten what seems like incredibly significant things in my life shows that even If other people did care, why in the world would they remember it now?
 
Love,
Corinne
 
I think we can all take Corinne’s advice to heart. Even though we are all incredibly busy, take time to make memories with the ones we love whether near or far. Time passes too quickly, don’t miss out! 

​Jordan, my youngest daughter was eleven years old when Laura and I told her I had ALS. We were sure she would not understand the news. To be honest, we didn’t even really understand it.

Fast forward four years: I was having a heart to heart with Jordan this summer asking her how she is doing with everything relating to my illness. She had read the letter from Corinne and decided to follow her example.

​ As you read this blog keep in mind that these are the words of a fifteen year old girl living with unimaginable pain. 

Today I had to explain what ALS was for the hundred-millionth time.  (Not really, that’s a hyperbole!)  You would think it gets easier after four years, but it hasn’t.  It’s not the fact that the disease itself is hard to understand:  it attacks all the muscles in the body until the victim is left completely paralyzed, unable to speak or breathe and eventually, the person dies.  That part is simple to explain. 

The difficult part is explaining it in a way that won’t make the person start crying, throw out some piteous statements, or worse, stand there in an awkward silence indicating, “I regret I asked, please let me leave silently now.” 

The challenging part of explaining ALS to my friends is putting it in kid-friendly terms while avoiding the word “death” as much as possible.  I try to say “terminal, neuro-degenerative disease”, but the average teenager doesn’t have a clue what those words mean.  When pressed, I go into details.  “He can’t move, he can barely speak, and when he does, it is hard for people to understand…” 

I trail off here recalling the dad I know, the one who could chase me and throw me over his shoulder, the one who could always make me laugh with a joke and the one who could talk to anyone about anything.  Now I watch him struggle through each day unable to articulate all those thoughts and witty comments that still go through his mind.  I avoid telling my friends that he could die soon because there are certain things that, if spoken, would scare people away, you know?

ALS should stand for “A Lonely Soul” because that is how it makes you feel.  The person living with ALS is trapped in their own head due to their inability to communicate. 

​The family feels alone because finding people to share feelings about sad and dark things like impending death, especially when the topic is so real and daunting, is difficult, to say the least.  Plus, the family has little semblance of “normal” isolating them from the world.  

It took me three years to actually start dealing with my dad’s diagnosis- I simply didn’t know what to do with it. It was like the world kept telling me that he was sick, people kept asking “How’s your dad doing?” and remarking “Such  a brave/courageous/strong girl,” but I didn’t really get it.

All I saw was my remarkable and seemingly healthy dad doing all the dad things that he did. I think the thing that ended my blissful ignorance to the true state of my dad’s condition was one night when he fell in the garage. You may remember the blog post about it; he was getting out of the car and walking towards the door when he tripped. His head cracked open and my mom  called 9-1-1. 

All the neighbors saw me crying, throwing a tantrum, sobbing uncontrollably… but no one really got why.  That night the truth hit me: my dad is really sick, and things are about to get a whole lot worse. I didn’t know what to do. I was beside myself with worry and pain.

It is tough going through this because coping is not something taught in school, and for me it has been more of a “trial and error” type thing.  I just have to figure it out. 

When I am at school, I can forget for a little while but the situation doesn’t go away like EVER!  When I leave in the morning, ALS is in my house.  Every day when I come home, ALS is sitting in my kitchen.  This disease has taken over my life as well as my dad’s. 

Everywhere I go, I have to find a ride (thank you friends!) because my mom can’t leave my dad at home to take me anywhere and it is difficult for my dad to ride in the van.  Sometimes, I have to stay home and take care of my dad while my mom goes out.   ALS has definitely taken over my life too

Kids at school talk about their parents.  Some chatter about what their parents do for a living or how they spent their weekends together.  Others talk about how dumb their parents are. 

I avoid all conversations about parents.  Talking about how my dad USED to work as an engineer or that he now stays home and is terminally ill doesn’t seem like something I should share. 
​
Growing up is hard.  Being raised by a single parent is hard.  Since my dad has been sick, it feels like I just have one parent.  My mom is busy juggling taking care of my dad, running a business and all of the other day-to-day things that adults have to deal with.  Needless to say, she doesn’t have a lot of time for me so sometimes it feels like I am raising myself.  

I was recently told that when life gets tough, you shouldn’t stop living; that is when you should live more.  That’s what I try to do:  live more even in times of trial!

 I play violin, I challenge myself in school, I am a cheerleader at my high school, I am involved in musicals and I travel as much as I can.  In December, I am going to London for cheerleading and then in January, I am going to California to visit my aunt and see a violin performance.  I am not going to allow ALS to stop me from living the life I want to live.

ALS is difficult.  It creates many challenges that most kids my age don’t have to deal with.  I have grown as a person, learned a lot, and continue to learn and grow as each day passes.  Keeping a positive attitude and moving forward in my life even through this difficult time is a daily battle but one I usually win. 

I am a Jhaveri, if there is one thing I have been taught to do, it is to win!

                    Keep on keepin’ on,
                                                            -Jordan Jhaveri

Dear Jordan, Corinne and Ashley,

As my days here on earth grow short, the list of things I want to share with you seems to grow longer.  I hope my wisdom will stay with you long after I am gone. 
​
When I was in my twenties, I was sure of everything!  Now, I am not really sure  of anything!  I do know that there is more to our existence than this life here on earth.  I know what love is and I know what love is not. Beyond that, there are a lot of uncertainties.

I​As you go through life, you will undoubtedly find many things to be passionate about.  My advice to you is to make sure you always have something you are passionate about. 

Life is just more fun when you are chasing a dream derived from your passion.  It’s okay to change your mind about what you are impassioned by; time and life experiences will drive you toward different pursuits. 

It is important not to appear to be passionate about everything in life.  People who are as passionate about which brand of cereal they will eat as they are on human rights issues, simply appear crazy.

When I was young, I made the mistake of wanting everyone to think I was smart.  That led me to talk a lot trying to impress others with my knowledge.  Now that I am older, I recognize that people are more impressed by a person of few words who takes time to carefully contemplate his thoughts.  Sometimes the smartest action is to keep one’s mouth closed!

Time is a limited commodity so spend it wisely.  Invest it just as you would money in the stock market.  Divide your time up among diverse assets – invest heavily in growing your faith and relationships because those are the things that will yield the largest return. 

Invest moderately in your career so your success will give you choices in life.  Invest time modestly in diversions because you need to have fun in life.  Avoid investing time in worthless pursuits such as gossip, comparing yourself to others and chasing society’s ideal of beauty because these always lead to a negative return on your investment.

As a family, we have many traditions.  I hope you will choose traditions to carry on in your own families or create entirely new traditions.  Recognize that traditions are a means of binding individuals together giving them an expectation of familiarity.  Traditions can be comforting when things all around you are changing .    
​
Change in life is inevitable but you have choices in how you handle it.  We have exposed you to change and you have shown you are adaptable and versatile.  Remember that when life throws you a zinger like a loss of a job or some other situation that seems unmanageable.  You are strong and powerful and capable of bouncing back no matter what you are faced with.

There may be times when you feel lost and alone.  If that happens, I encourage you to turn on some music really loud like we used to.  If you are able to grab someone and make them dance with you, do it!  As you are doing it, remember how one of you would grab your mom and dance with her for me when I no longer could and think about how we laughed as you danced. 

Hopefully, that will remind you that you are never really alone.  We are a family and we will always be there for one another no matter what.  One of the things we do best together is laugh.

May your life be filled with dancing and lots of laughter!

Love,
Dad
​
P.S. You know what the right choices are, and if you don’t, ask yourself would I do this if my dad were with me?