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

Raw

7/23/2016

7 Comments

 
Picture
​Laura asked me to be real and describe what is going on in my mind. I just don't have the constitution to talk, think or write about what is happening to me. Every time I think about it, I absolutely breakdown in tears; and anger completely engulfs me. I don't want to write about it or even think about it!
 
Laura encouraged me to push through the pain and write. “Why?" I asked her. The response, “It will change the people who read it." I do not know if she is correct; nonetheless, here we go.
 
Laura made this request with some hesitation, thinking the process would be too emotional. I have created several mechanisms to combat my feelings.  All of them end with a common conclusion: another chapter will start soon and anything temporary is tolerable. There are rules that help me maintain my composure.

Picture
  • No lamenting over the situation I am in 
  • No asking “why me?”
  • Accept where I am right now
  • No anger 
  • No imagining what is going to be
  • Finally, trusting God with this journey 
Those are the rules and they are very hard to follow because they fight with the very human condition, our need to be in control and I am terrible at following them.

Picture
​I type this post as I sit in my power chair which is one of four places I can sit - bed, power chair, toilet and shower chair. That fact is so frustrating. Laura and I designed our home for entertainment. I can't access any of it.
 
We moved to the beautiful northwest in 2010. Laura and I love wine and when we got here, we enjoyed visiting wineries. Dinner was smoked salmon on crackers with jalapeño jelly, some fabulous cheese and fruit complemented by a merlot.

​We would enjoy this feast on our deck or in front of a fire in the family room. We would talk about anything and everything. That is just one scenario of many, but who the cares? ALS has robbed us of all such experiences.

Picture
​My motto was: I haven't met a giant I can't slay!
 
Let me introduce you to A.L.S., the giant whose boot is on my throat. This killer is relentless and it quietly takes small pieces of me day after day. It wears me out.

 My motto now is: Ah, ah, ah, ah, staying alive, staying alive.
 
 When I voice my deep sense of loss, I am quickly reminded of all the people I am helping. Also about everything that ALS has given me, like the new people who have entered my life.

​While that may be true and does assuage me - those truths vaporize quickly when I have to ask someone to take me to the bathroom; or suction my mouth for saliva and phlegm because my body is unable to swallow; or ask someone to move me because I am paralyzed and not moving makes everything hurt; or I have an itch. 
 
I have to prioritize these requests. Why prioritize? Because my caregivers are human too, which means they have a limit as well and I have to be careful how demanding I appear.

Picture
​Aside from the personal loss with which I am suffering, it is nothing compared to the loss my family is experiencing. Our family dynamic is entertaining to say the least.

Anytime we were together you could count on laughter being present. We still laugh but now I am a spectator.  Everyone does a great job of including me but it is impossible to rattle off one liners when it takes me an eternity to get two words out.
 

​
No matter how much we try to ignore reality, the elephant is still in the room.  Oh, the tears shed over what might have been instead of what is.
 
That sentiment leads me to tell how I keep moving forward in spite of circumstances. I wish I could say it is positive thinking or faith or that “never quit” attitude I have displayed all my life. The plain truth is I just deal with now.

I keep asking myself, can I tolerate what is happening right now?

​ Life boils down to: now!

Picture
​That is how I move from crisis to crisis, my strategy to survive. The challenge is the times when I’m not in the middle of a crisis. The trick to stave off insanity is to always have plans for something in the near future, something I am looking forward to. It doesn't have to be big, actually it's better if it is small.

Why small?  Here is the wisdom, because speaking for myself, if I need big plans to keep me going, I will miss life's small pleasures. I look forward to a visit, or Corinne recapping her day, or Ashley sharing her latest idea, perhaps Jordan telling me about the drama in her life or a show I can watch with someone. Something small, apparently ALS has taught me to find joy in everyday things. 

Picture

The raw truth after fighting for five years is: I am tired.
Tired of playing mind games for survival.
Tired of asking people for basic needs.
Tired of the pain.
Tired of hoping for a miracle of healing.
Just tired. 
 
The most difficult question I wrestle with is - Do I want to take my life? I don't want to die, but I don't want to continue to live like this. Nobody is able to show me the light.

​This song captures where I am right now. 
 
Man in the Wilderness by Styx
 
Another year has passed me by
Still I look at myself and cry
What kind of man have I become?
All of the years I've spent in search of myself
And I'm still in the dark
'Cause I can't seem to find the light alone
Sometimes I feel like a man in the wilderness
I'm a lonely soldier off to war
Sent away to die, never quite knowing why
Sometimes it makes no sense at all
Makes no sense at all
Ten thousand people look my way
But they can't see the way that I feel
                
Let me conclude with pure honesty. I sincerely hope I am helping you. Being this transparent is hard for me. It took me five days to write and rewrite this post because self-examination IS NOT EASY. Please help me by sharing how the raw truth helps you or anyone who reads my intimate struggles.
7 Comments
Teresa Huston
7/25/2016 08:04:39 pm

Akhil,
Thank you. I pray you find peace and understanding for your suffering. I truly believe there is a reason for everything, although it may not be shown to you until you sit with our father. God strengthen you and comfort you.

Reply
Doug Findlay
7/25/2016 09:46:59 pm

Akhil,

Thanks for sharing. Your thoughts and insights are so valuable. The part that makes me the most sad...you can't add your "one-liner!" I image I'd like your sense of humor and I think my one-liners are good...but timing is everything! All of the stories that were shared at your birthday party ,make me wish I had been able to get to know you. You've impacted so many lives including your great family. And we appreciate you sharing your daughter to help Kelli.

While I'd like to take you on humor-wise, your intellect and wisdom are something to behold. I appreciate you putting yourself out there. It's a reminder for all of us to "be real" and value every second we have. While we'll spend eternity together, I hope you're around as long as God has a will and purpose for your life. You've enriched my life and inspired me, so thank you!

Reply
Melanie Bailey
7/26/2016 01:41:37 am

I remember the day I first saw the man in the wheelchair who became my husband. I remember the courtship and wedding day. I remember the day he shared that this was the day he had lived over half of his life in a wheelchair. The six years we had together we're gone in an instant. His choice. All the world's loss. God has blessed me with good memories. I thank God daily for them and the godly people through the years for that to be. You have those memories and are creating more all the time with God and all He brings your way. Treasure everyone as He does. 🙏🏾🎀💐💫😇💫💐🎀🙏🏾

Reply
Pradeep Venkatasetty link
7/28/2016 08:02:30 pm

Thanks for sharing your thoughts and wisdom. As a fellow ALS patient, I share your furstrations and anger. Like you, I am most angry of what my illness is doing to my wife and three children. ALS is an illness that slowly and continuously robs you of all human dignity. Likewise, I am lucky to have been blessed with a very supportive wife, children and group of friends.

God bless you and your lovely family.

Reply
Akhil
7/30/2016 08:19:47 pm

Thank you for the message. The question that keeps coming to my mind is,
"How can I help others?"
Perhaps you have some ideas

Reply
Lynn Devereux
8/11/2017 03:43:49 pm

The question, Akhil, is not how you can help others but rather how is it possible (it's not) that who you are is not helping others? Just try to stop that blade of grass coming up through the pavement... That blade of grass is being all that God has made it to be. And you, my friend, ooze with that precious breath of life. Every moment with those we love is cherished. Thank you. You are wise.

Jewlz
8/2/2018 09:24:37 am

O how I am so thankful I came across your blog, I only wish it would have been sooner. Reading all of these entries is so uplifting in my own time of struggles and "WHY ME". You have made an impact in my life and I just wanted you to know. Laura please tell him.

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.