Over the past several months, Marissa Harshman and Ariane Kunze have been spending a lot of time with me and my family.  They are two beautiful young women, so of course, I loved having them in my home! 

They were tasked with following my family in order to write a story about ALS and hospice care.  I hope that what started out as an assignment turned into a life-changing experience for them because they were exposed to all the intimate details of our lives as we cope with ALS. 

Marissa and Ariane have compiled those months of videos and interviews into a series of articles for The Columbian.  It was hard for me to watch the videos and read the articles because when I think of myself, I still see the old Akhil.  They destroyed my illusion of what I think I look like; they portrayed a stranger.

I HATE all of it!

I have heard that even though it is sad to watch our story unfold, it is still inspiring.  I hope you will embrace my message of faith, hope and love as you read it.

Please go to the following link for the first article and video of the three part series:  http://www.columbian.com/projects/2015/11/29/living-with-als/

Akhil asked me, Laura, to write a blog post about why he should keep up the fight. 

I am guessing that he wanted me to write it not only for him but for any of you struggling in life so you would be encouraged to hang in there.

First, there is the matter of faith.  I believe in a sovereign God who has a plan for each of our lives, should we choose to live those days out.  He knows precisely when His plan is completed and our lives are done. 

Akhil has grappled with the idea of assisted suicide because it is legal here in Washington.  I am sure if I were I in his shoes, I would have wrestled with the thought as well.  My beliefs make euthanasia a concept I would find difficult to embrace; however, I would not pass judgment on someone who made that choice. 

I find hope in knowing that God uses all things for redemption.  He desires that each of us will make the choice to follow Him. It is only by choosing Him that we can be redeemed and accept his offer of an eternal life in heaven.  Unfortunately, just as Christ had to die for all of us; sometimes one of us must suffer in order that someone or perhaps many may have their eyes opened to the grace and mercy offered by the cross. 

I encourage Akhil to live each day as God has ordained because we do not know who may be watching our journey and be impacted by it.  We don’t know how God orchestrates opportunities for salvation but there could be that one person, who on that last day of Akhil’s life, chooses to receive that gift because of something he saw demonstrated in Akhil’s journey.  God values each one of us so much that He will sacrifice one who is secure in his destiny to bring one more to Him.

Second, I don’t believe in losing.  We have tried to instill in our daughters the belief that Jhaveris are winners.  Winners don’t quit. 

Winners may need to get creative and find a work-around at times or admit defeat with grace to a worthy opponent but they do not just give up. 

I would like to think that we are winners!

Third, I want Akhil to hang in there for our children.  Life is hard; we all will face some extremely trying situation at some point that will test our character.  When my children face something difficult, like a loss of a job, bankruptcy or divorce, I do not want their first thought to be that checking out is an option. 

I want them to remember how we fought this battle up to the end with grace and dignity and that in itself is a victory!

Finally, I want Akhil to hang in there for me.  Does this disease test my patience daily?  Yes!  I get frustrated when I cannot understand what Akhil is saying.  The words coming out of this man who was once a gifted public speaker are unintelligible and it is maddening. 

I get frazzled when I am trying to get something done and Akhil is making continual requests for movement, scratching and suctioning.

Is life hard living with someone with this disease?  Of course it is! I am dealing with the financial stresses imposed by ALS along with having two girls in college and a third headed there (hopefully).  I am working crazy hard to build a business that may or may not be a means to support myself someday. 

On the weekends, I am the sole caregiver for Akhil; there is no rest after my workweek.  On Monday, it all starts again.  Yes, life is hard and it is definitely not what I thought it would be but I am happy in spite of these circumstances.  I am happy because for me happiness has always been defined by my faith and my family. 

I have faith that God is allowing us to endure this struggle for a purpose greater than we can see right now. I have three wonderful daughters who are growing up to be strong, persevering and empathetic women thanks to this journey.  I have a husband who loves me.  The smiles from that man make each day of hardship worthwhile. 

Will I miss the difficult days caring for someone with this dreadful disease?  No.  But that does not mean that I won’t miss Akhil.  I hang on to each day with him because I know that these days are numbered.  There will come a day when I will long to hear him calling to me to move his arm or scratch his chin.  For now, I find happiness in knowing that we have one more day together. 

​ I am sure that whatever challenge you may be facing, you have someone out there who feels the same way about you; someone who would treasure just one more day with you so hang in there!

There is no doubt that this ALS journey is difficult on every member of the Jhaveri family. Each day is a test of perseverance and strength.

Would you keep fighting if you were in his shoes?  

​Akhil would like to hear from you why you think he should continue this fight with ALS. 

Sincerely, 

Lori Davis 

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. 

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. 

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.  

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.

​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

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.