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Intimacy by Laura

7/16/2018

10 Comments

 
​I had a sad day today; one of those days when I just needed to talk, to feel understood, and have a hug.  I looked at Akhil lying in his hospital bed in our room with his AVAP assisting his breathing.  I so desperately wanted to share with him all the struggles I am dealing with today.  When I approached his bed, he raised his eyebrows like he was excited to see me.  I asked, “Do you need anything?”  and he raised his eyebrows to indicate “yes”.  We spent the next several minutes making adjustments so he could get comfortable.  After each one, I asked if he needed something else.  Thinking at some point I would be able to share my thoughts with him, I was disappointed when, once I had addressed all his needs, he simply closed his eyes.  He kept them closed probably because he was tired after all the effort to communicate his needs.  I found myself whispering, “I wish I could talk to you” as I walked away. 

It has been several months since I have been able to have any semblance of a conversation with Akhil.  Prior to ALS, we would talk all the time simply bouncing ideas off one another or solving the world’s problems.  In the early days of starting my business, Akhil could still speak.  He loved being involved and giving me his opinion of how I should proceed and, more importantly, I loved hearing it.  He is someone who, even if he weren’t my husband, I would recognize as highly intelligent so I have always valued his input. 

As Akhil lost the ability to speak, he would still enjoy hearing about my business meetings and spell out “How was it?” by raising his eyebrows to select each letter.  He would even spell out suggestions for me and occasionally spell “I am proud of you.”   Over the last few months, Akhil’s interest in hearing about the successes and failures in my business has diminished.  It became subtly apparent as I shared things with him. Thinking he was going to respond to my story, I would be disappointed when he would spell “move my arm” instead of a reaction to my news.  After several incidents like that, I realized he was more focused on his discomfort than on what I was saying so little by little, I quit sharing.

Many people may believe that sex is the ultimate form of intimacy. I disagree.  Communication is the most intimate act one can have with another human being.  When we share our opinions, thoughts and feelings with another, we are making ourselves far more vulnerable than we would during sex.  Each time we share, we risk being judged, criticized and ostracized for our points of view.  If our thoughts are accepted by another, we feel encouraged to share deeper and more meaningful thoughts and feelings.  With Akhil, I allowed myself to become vulnerable to a depth no other human being will ever know.  No other person will ever share as much of my life with me or grow with me like we did from our early 20’s until today.  No other human will ever know me to that depth and have that level of intimacy with me.   
​
Today, I suppose in a way, the tables were turned in that I am sure Akhil was frustrated that he couldn’t talk to me.  Akhil appears to be in his final weeks or days of life and he wanted to tell me something.  It has become increasingly difficult to discern an eyebrow raise to indicate “yes”.  Akhil even has trouble closing his eyes to indicate “no” and often they remain half open leaving me to wonder if that indicates “yes” or “no”.  Tonight he was trying to spell something for me.  I got “Always use Akhil” and then he gave up.  I am not sure what that was supposed to mean.  A friend suggested it meant to always keep his name since he has always been a little jealous and possessive of me. A short while later, he spelled “puppy”. We no longer have a dog so, puzzled, I asked him, “Do you see a puppy?”.  He responded “no” by closing his eyes and leaving them closed making me wonder if he realized what he was spelling was nonsensical.  Later, he opened his eyes wide.  I was sitting on my bed and could see him.  I quickly asked, “Do you need something?”  He responded “No” by closing his eyes.  He looked at me again and I asked the same question and got the same response.  After the third time, I jokingly asked him, “Do you just want to look at me?”  I was surprised when he opened his eyes wide to indicate “Yes”. I suppose that was his effort at intimacy, a way to connect with me and let me know that he was thinking of me. In that moment, I thought, “ALS can only take away everything if I let it”.  I got the equivalent of the hug and understanding I was seeking after all. 
10 Comments
Mitzy
7/18/2018 08:46:02 am

I just love you Laura..... What an amazing woman you are...and one step further...what an amazing wife you are! You willingly share your most intimate thoughts and I relate to them all. In my world, I am trying to remember the times before ALS, trying to focus on who my husband was when he was well...it is difficult when that nasty demon disease stamps it's mark.....

Reply
Colleen McConnell link
7/18/2018 09:07:57 am

Oh Laura my heart breaks for you.
Your journey has been such a dragged out affair. Praying for strength for you and peace for Akil.
Love to all of you!

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Landis Epp
7/18/2018 09:17:09 am

WOW! Laura, you use words so well to communicate what is in your heart. The statement that AKS can only take everything away from us if you let it, is so right on! We had a new attendee at our support group yesterday who was just diagnosed a few months ago, and it is so new and raw. Your wedding vows of "in sickness and in health, till death do us pare!" are being played out bravely in your lives. It sure is not without tears, for they are the price we pay for the privilege of loving, and it is so evident that you love deeply. God bless you and give you the strength for he days to come.

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Sally
7/18/2018 10:08:19 am

Satan is taking advantage of Akhil's health. there is a battle going on in the heavenlies for his life. I say let the prayer warriors take their authority that Jesus has given to us to fight using God's Word for the complete healing of Akhil's body. I have read many tesitmonies where God has fully restored someone's health when they are near death. If we do not stand against the wiles of the devil then he wins God's Word does not return void. I heard the late Derek Prince in a teaching on Youtube say that when a husband and wife come into agreement they can pretty much have anything they ask of God based on Matthew 18:18 -20 Jesus said 18 "I tell you the truth, whatever you bind on earth will be bound in heaven, (we bind als and ms in Akhil's body and command them to leave him in Jesus' Name) and whatever you loose on earth (we loose the healing power of the Holy Spirit to heal Ahkil's body from the top of his head to the soles of his feet) will be loosed in heaven.
19
"Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. (Father we ask for the complete healing of Akhil's body in Jesus' Name)
20
For where two or three come together in my name, there am I with them.".
I stand with you Laura and Akhil for his full healing do not let your hope be deferred. Luke 10:19 says we the believers have all power and authority over the enemy. This is a battle. Put on workship music to run the demons out of the home, pray in tongues so only God knows what you are saying,
read the healing scriptures or play them over Akhil's body (https://www.youtube.com/watch?v=d2Wp5_bL338&t=2181s) this is the link to the reading of the healing scriptures by a very annointed man Pastor Kenneth Hagin. His ministry saw miracle upon miracle of healing. Plaster God's healing scriptures all over your home to remind you that Jesus is the Healer. You shall lay hands on the sick and they shall recover Jesus said this with no maybe's here. The Bible says God's word is medicine to the body and combined with you warring for Ahkil's healing the enemy cannot win this battle. God bless you Laura you are amazing and I love your posts. I am warring in prayer for Akhil's full recovery. Wendy Moore was healed of ALS using God's Word and she and her husband's faith https://www.youtube.com/watch?v=0ydxVcPIbH0 sid roth show on youtube. Continue to fight the good Fight using God's Word Laura

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Pam Hough
7/18/2018 04:53:57 pm

Laura, This is such an intimate story of your struggle and life. But I remember Akhil and how he looked at you all the time. You are his beautiful and gracious Laura. I know he'd love to say the words and give you the hug you need and want from him.
Thank you for sharing your heart. I'm praying for God's arms to hold you near in the coming days and weeks. May his peace and rest fall so softly around your family that his glory reflects on your faces as you & the girls endure the impending loss. Live you my friend. I so wish we were closer. 💕

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Patty Watkinson
7/19/2018 10:36:39 pm

I Love You Laura ❤️😢

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Karl
7/25/2018 03:41:23 pm

I hope my love with my partner endures the way yours has through such an experience. Amazing.

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Kathryn
8/1/2018 07:10:49 am

I am SO sorry you are going through this. I just happened to link onto your site through the "Dying Father gets his final wish" on MSN.
I have a lot of ANGER at times b/c my mom died of ALS 2 yrs ago (AND Frontal Temporal Dementia, & Pseudo Bulbar) . Once diagnosed, I moved into take care of her. It was nothing short of pure hell watching as she struggled to breathe & survive. I could NOT believe that she could not talk, not breathe, not swallow. ETC ETC
I don't have to tell you any of these struggles b/c you are living them as well.
I wish that more was known about ALS but it appears to me that the "professionals" aren't interested in hearing ALL the things that had been happening with her health that lead to this.
You'd think that they'd want to hear everything, gather all the data they could.
Anyways- I want you to know that I think you are such a great writer & what you have documented is going to be a treasure for so many.
We are not alone in this journey we call life BUT we can feel so alone at times.
May God bless you & your family & provide you with peace. I AM SO SO SO SORRY... it's SO hard to watch someone suffer so greatly.

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Chris
8/1/2018 07:29:11 am

My Father battled ALS he was a Navy man went in at 18 and was honorable discharged at 42 and passed at 47. I was at the hospital that night and all I said was "see you later" when I left, I was 15. I'm now 1yr older than he was when he passed and I often look back on that day and wish I could do that over in his last day on this earth. God Bless you and family

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Kim Cranston
8/1/2018 06:34:30 pm

Laura,
There are no words...
May God bless you and keep you and give you peace.

With love,
Bob and Kim

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    The video is Akhil's journey with ALS.  Painful to see but the faith his family shows is uplifting.
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    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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