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?
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.
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.
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.
I needed someone to talk to, which seemed impossible because at the time I had a whopping zero friends and not one person outside of my family I really trusted enough to tell anything to. Luckily, I found someone I can confide in, but it wasn’t easy.
I was depressed, and broken. I was scared to trust anyone and worried about being judged for being a “baby” about everything. I didn’t even realize I was depressed; it seemed like such a harsh label. Looking back, however, it is apparent.
I had to take the first step in order to establish the relationship that we now have. My best friend in the whole world has got my back in a way most fifteen-year-olds would never understand. I tell my friend every thought about my dad. I have even called this person crying and out of my mind with panic, grief and fear, putting him in the awkward position of having to calm me down. I hope if there is someone in your life who is struggling with something, you can be there for them even if just to listen; that may be all they need.
I was depressed, and broken. I was scared to trust anyone and worried about being judged for being a “baby” about everything. I didn’t even realize I was depressed; it seemed like such a harsh label. Looking back, however, it is apparent.
I had to take the first step in order to establish the relationship that we now have. My best friend in the whole world has got my back in a way most fifteen-year-olds would never understand. I tell my friend every thought about my dad. I have even called this person crying and out of my mind with panic, grief and fear, putting him in the awkward position of having to calm me down. I hope if there is someone in your life who is struggling with something, you can be there for them even if just to listen; that may be all they need.
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
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 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
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
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