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

Corinne's Perspective

9/21/2015

10 Comments

 
Picture
I have three beautiful daughters. My middle daughter, Corinne, opened up to me in a letter. She gave me permission to share her thoughts. I have to warn you that her words are beautiful yet heart wrenching.

My dad has ALS and he is slowly dying in front of me. I can see it every day; I can hear the struggle in his breathing and speech getting worse each day. Today he said that he felt so sad he wanted to die. It's hard to hear those words coming from your dad, the man you've forever looked up to, the strongest one in the house.

It's hard to know what to do to make him feel like his life is still worth living. I know it's hard for him to still feel important when he can't move or eat, and can't breathe, speak, or sleep well.  I'm sure of that; but it's also difficult for me especially to express how much I love him and need him, just the way he is. I need to see him smile and laugh every day.  I need him to be there and listen to my silly stories and I need him to appreciate all the TV shows and movies, goofy humor, and nerdy things that I like. 

Picture
He's still my dad, and it still feels just the same even though he can't do what he used to do. I feel like as my sisters and I are growing up, we're adopting a lot of his quirks and behaviors and making up for everything he lost the ability to do, but still has in his heart. 

We like to do little things like trying to make people laugh, even strangers, and bigger things like wanting to inspire and educate, being in front of crowds and engaging them in whatever we have to say. 

We have values like keeping the family together and having a great time no matter what. Nothing has died completely and nothing ever will in our family. 

Picture
We get stronger every day, dealing with something like this. My mom has had to take on much more than she ever expected; things that could make the average mother fall apart; but she is amazing and gets through everything with a deep breath and a smile every day. 

My older sister is usually away at college, but when she is home she makes sure my dad is happier, and my mom a little less overworked. 

My little sister amazes me the most. She's grown up having to work through a lot on her own, and as a result, is definitely the smartest and most talented out of all of us. When I see her with my dad, the responsible caring and mature woman she is becoming really shines through. 

Picture
My family is amazing but I often feel like a failure. I don't bring much to the table and constantly disappoint myself and probably my family too. I'm trying to better myself but when I work on bonding with my family I regret not taking more time to myself and then there's this constant loop of regret going. 

I need someone. I feel like I have a lot of issues that I need help sorting out and my mom shouldn't have to deal with anything else right now. 

The people who say they're there for me outside my family definitely don't realize what they'd be in for, and I can't go around embarrassing myself and being an inconvenience to everyone.

I try to forget everything that bums me out but being at home I constantly have to swallow a lump in my throat and fight back tears. I can't tell if I'm weak or selfish for feeling this bad or if it's normal. I do know that I constantly am seeking attention where I shouldn't to make up for what I'm lacking at home. 

Picture
I've always been the type that needed taking care of but I'm trying to make that feeling go away.  

One of the hardest things for me is that I forget other people are struggling too, that other people feel pain too. And regardless of what everyone's situation is, we usually feel like our pain is the greatest.

I try to be a really caring person, in that if someone needs to vent about their problems, I will be the one to listen. I hate that it usually wouldn't be ideal for me if the roles were reversed, but that's where we are. So when someone comes to me feeling hopelessly depressed over a breakup or a move or even a divorce I still have an incredibly hard time feeling bad for them. I think to myself, “You think that hurts, here's what's happening in my life!” Of course, I never say this out loud.

I actually don't really tell anyone about my dad, because I don't want to bring anyone down and no one will really understand or respond the way they should anyway. So then I start feeling resentful of everyone and everything, like why doesn't anyone care enough about me?

I'm so desperate for someone to talk to about how hard things are for me, but again I hate sounding selfish, or worse, I'd hate for other people to think I'm making too big a deal out of something.

Picture
Living with ALS in the family is a challenging, lonely journey.  I continue to pretend that everything is okay so I can keep up my cheerleader façade.  

One day soon, I suppose I will have to let the world know the truth and that everything is not okay and that events have changed me and my life in ways that to most are unimaginable.  I can only hope that someone will be there who understands.

 Teaching them to obey everything I have commanded you. And surely I am with you always, to the very end of the age. 
Matthew 28:20

10 Comments
Tonja chrisman
9/21/2015 05:43:05 pm

You know i understand you fully, i have lost my gramma, great aunt, my momma, my brother and my aunt to a.l.s, it is very difficult to watch your loved one struggle to do things they once did by themselves, myself i helped with my mom during her struggle with a.l.s, i cried alot, so yes darlin i know how your feeling, i get so mad at people that say ugly stuff about their moms or dont go see them near enough, id give anything to see my momma again, so then almost 10 years after my mom went to heaven my younger brother started his struggle with a.l.s and went to heaven, so my heart had more heartache and then the questions starts all over again, and then yet again my famioy once again 7 years after my brother went to heaven my aunt goes thru the same struggles, so i know over and over again exactly how you feel and its okay to have those feelings and of course people who havent been there dont quite understand, A.l.s sucks! Just hug your dad daily and tell him you love him make each day the best you can for him, much love to you and your family

Reply
Arlene mccartney
9/21/2015 05:48:08 pm

Hi there, I feel your pain. Let me me know if I can help in anyway. I lost my husband to ALS in Jan 2015. fb message me if you want and I can give you my phone number.

Reply
Mitzy Zahm
9/21/2015 06:32:36 pm

Corinne, bless your heart. Sometimes life is just so darned hard! There are so, so many people that understand exactly where you are coming from and what you are feeling. Your feelings are warranted, your feelings are normal, you should not have to go through this ugly disease and watch your whole family suffer. You should be enjoying being young, having friends to run and shop with, going to prom, enjoying school and after school activities. It is not fair that you have to live with the horror of ALS, but you do. You do, and lots of us do, and did. My husband died in January of 2014. I often thought, and still think....why him? why me? Why our children? why, why, why?? I should be growing old and enjoying more wonderful days with the love of my life...... We were so happy, I adored him! Why us? There are no answers that make things feel any better, but you are doing the exact right thing in expressing your feelings. Perhaps your mom could put you in touch with a counselor, I have had good experiences doing that. It will help to get some of the pain and emotions off of your shoulders. I'm happy to email with you anytime....or help in any way that I can. Your momma knows me. My email is mitzyz@hotmail.com and I am part of your ALS family. I wish that I could just hug you tight.....you are a wonderful daughter!

Reply
Chris Sutter
9/21/2015 07:00:09 pm

Akhil, it's hard to read something this honest and beautiful and not feel unworthy. As difficult as your life has become, you know simply how lucky and blessed you are too have the family you do. Corinne, I remember all the things you mention about your dad. He has always had a great sense of humor and did all he could to share it with others. I don't know that I can offer you any solace, and words like "hang in there" sound so hollow. Don't sell yourself short just because you want to escape once in awhile. Having Akhil as your dad gives you a great role model for meeting adversity. Not every day is a good day, but every day is a day. May Good continue to bless you all.

Reply
Paul Baldwin
9/21/2015 07:22:20 pm

Corrine, you are an amazing and strong young lady. Allowing your dad to share your thoughts says a lot about who you are! l'm available to listen to you anytime. You young ladies remind me of my girls! I'm here anytime you need!

Reply
Mark Mary
9/21/2015 09:05:13 pm

Corrine, thanks for your honesty and openness, I truly respect your words. I cannot say "I know how you feel" or "I know what you are going through" because I don't. I can say that I love your words, your father, your mother and I love Christ. You family has taught me much about faith and love and for that I am grateful. Thanks again for your words and know that you are in my prayers. Give your mom and dad a hug for me. God bless you all!

Reply
Barbara Keck
9/22/2015 12:17:47 am

Corrine, I only know of your Dad , and your family, through Patricia. I am thankful that you wrote down your feelings and that you allowed them to be shared. I lost my Mom, my hero, my best friend, to ALS in 1987. I was 37. I was fortunate to be able to move home and spend her last months together. Hardly a day goes by that I don't talk to her, still. I didn't realize I wasn't really going to lose her after all. She is with me always.
It is hard and unless, or until, someone goes thru a similar situation or loss, they don't get it. That's not their fault. It's just how life is. I found myself screaming inside, "How can you (fill in the blank- laugh, go shopping, etc) when my Mom is dieing!"
God gives us what we need, we just need to ask and we shall recieve. Embrace your feelings and know it's okay to have them. God hears your heart and will fulfill your needs.

Reply
Lisa Davis
9/22/2015 08:40:20 am

Corinne - You are a beautiful young woman, inside and out! I'm sure there are support groups where people truly know what you are going thru - you are not alone!! <3

Reply
Adeline Blumentritt
9/24/2015 03:52:42 pm

This is a very beautiful letter for all to read. From a very talented young lady that wrote this from her heart. You are loved very much by a LOT OF PEOPLE. open up to them and you will be surprised how they want to give you support at this time in your life. Do not hold all this in give us a chance to listen. Love you Grandma.

Reply
Shaelyn
2/16/2017 05:20:41 pm

Hey I cried when I read your posting. My dad has ALS and im torn inside. I feel so alone and I know what you mean by needing a friend. Too bad you weren't from San Jose CA. This is the hardest thing I have ever dealt with.

Facebook info
Shaelyn Weiler
socrmom22sw@aol.com

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.