Me and ALS
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In Retrospect

11/10/2015

7 Comments

 
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It is December 23rd 2010, my 45th birthday. As I get ready to go to sleep I find a letter to me, the handwriting is very familiar. Curious, I open it and start reading
​:
“Happy Birthday, Akhil! You are going to find my prophetic words unbelievable, but don’t stop reading until the end. Let me introduce myself. I am you – the future you - and I am writing to you from 2015. 

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You are enjoying the fall weather of November 2010 and you’ve had a very warm summer. In a couple of months you and Laura are going to go to Seattle for a company party. You are going to have one glass of wine.

After an hour or so your speech is going to be slurred even though you will not be drunk. On the drive home, Laura is going to tell you that you should be careful of drinking too much. You will let her know that you had only one glass of wine. She won’t believe you now, but she will in about six months.
​
In May of 2011, you will feel your left bicep twitch sporadically. At first, it is just a nuisance.  As the sporadic nature becomes more continuous, it becomes worrisome.  In spite of that, you will do what you’ve always done, ignore it and hope it goes away. It will not go away so you make an appointment to see your neurologist thinking it is related to your MS. It is not. 

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Your neurologist will recommend you to see a specialist; her name is Dr. Kimberly Goslin.  You will experience a very special relationship with her not only because she is the master of the disease you will be diagnosed with,  but because you are connected by an unexplainable bond; or maybe she just likes your smile… 
​
On July 28, 2011, your life will forever be changed when Dr. Goslin will tell you that after all of the tests she performed, it appears that you have ALS.  

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As the disease progresses through 2015, you will lose the ability to
  • Feed Yourself
  • Dress Yourself
  • Walk
  • Roll over In Bed
  • Eat
  • Speak Clearly
  • Swallow
  • Move
You will have a feeding tube installed because of tongue atrophy. This means that you can’t have any food or water in your mouth for it will cause you to choke. You can’t overestimate the psychological toll it will have on you to not be able to eat, especially with everyone else eating around you.

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​You will get to a point where you will want to end your life.  Everything will be hard.  You will be totally dependent on others for your every need; at times, you may feel like a burden.

Your suffering will not be in vain.  It will draw you closer to God.  You will find strength and hope in knowing that while the disease has stripped you of many things, it cannot take these things away from you:
  • The love of your wife – you will actually understand how much your wife loves you as she takes care of you
  • Your relationship with your children – this will actually improve during your illness
  • The love of family
  • The respect of your former employer – you will see what a great company you worked for as they continue to support you during this challenging time
  • Your faith –  it  will be deeper than it could possibly be had you not suffered
  • Your smile – you will still find lots of things in life to laugh about
  • Your ability to make a difference – as you struggle with ALS, you will have the ability to reach more people than you ever did as a healthy man. 
My friend, I know that you have always lived life to the fullest and have no regrets.  That is a good way to live!  As you face these trials, know that you can continue to live life to the fullest; it will just look different than the life you had before ALS.

Sincerely,
​
Akhil

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Thank you for reading this letter. Obviously, I did not send this to myself five years ago. However, you can benefit from my hind sight.  Enjoy the moments. I wish I did when I had the chance.

I want you to do something for me, so I can live vicariously through you. Find a quiet place to eat where there is no noise. Look at your food, smell it and then pick it up and take a bite. Enjoy the sensations that it makes in your mouth. Listen to the crunch, then describe it to me. I read all the comments and I really appreciate it when you write to me.

We are always getting ready to live but never living.
― Ralph Waldo Emerson

7 Comments
Lisa Davis
11/10/2015 05:33:41 pm

Thank you for sharing this beautiful video! God has blessed your wonderful family and love for each other!

Reply
Cecelia
11/10/2015 10:08:24 pm

Akhil,

I love your posts. I never knew about the wine. It must have been really weird to have that experience knowing you were not drunk. What an amazing journey it has been so far, my friend, getting to know you. I would never have had the chance to get to know you, Laura and the girls so well had you not gotten sick. Oh, how I wish you had not but what an incredible blessing knowing you has been. I loved hearing your voice again tonight. I have missed it so much. You are right. It is easy to forget that it is you in there if I am not around you much and can't understand you speak. You have been, and are, such an inspiration. I can't possibly understand what you are experiencing, because I am not in your body, but I understand how I feel about you. You are such a strong man of faith and a great friend. I love you dearly! Cecelia

Reply
Paul Baldwin
11/11/2015 12:28:54 am

Thank you for sharing your journey, both through your blogs and video. You and your family are a blessing and inspiration! Constantly praying for you. 💛 💙 💜

Reply
Sandy
11/11/2015 05:31:27 am

It is so hard reading your blogs but I always do. Most of the time they bring me to tears and I just don't know what to say. You were remarkable back then as you still are today!! As always, thoughts and prayers your way.Love you!

Reply
David Henson
11/11/2015 09:55:32 pm

We miss u all Akhil !!! Thanks for sharing this vivid illustration of reality with us. It definitely helps us understand! I recall having bible study back in Chesterfield, MO and Your faith is as strong now as it was back then ! It inspires us all ! Thanks man! You're awesome!

Reply
Cindy
11/12/2015 10:32:20 am

I really look forward to reading your blog. You see, my husband also has ALS. He also has a PEG and has chosen to quit eating as it wasn't worth the struggle of choking on every single bite. Your insights and notes hit home in so many ways, and even though I tend to tear up, they make me try harder to be supportive and patient as we go down this path. Thank you, Akhil

Reply
Lynn Devereux
8/12/2017 11:25:46 am

a worthy assignment...to value and truly appreciate what we have that has been taken from you. I will not forget to do this.

Reply



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    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!

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