August 7, 2018

These have been an exciting couple of weeks in the Jhaveri's world.  Monday, July 30, 2018 was a day we celebrated only because of ALS.  We created joy in spite of a devastating situation.  On this day, with very short notice, a crowd of about 80 friends gathered at a local wedding venue to watch all three of my girls wear wedding gowns and be escorted down the aisle by their dad, Akhil, who is within weeks of death if not days. This creative celebration was the idea of my friend, Deanna Green, when I shared with her that Akhil said he is hanging on for the girls’ weddings after suffering with ALS for seven years.  Thinking it may give Akhil the freedom to let go of all the suffering of this world, Deanna said, “Let’s give him a wedding!”   Within ten days, we had a wedding put together complete with an amazing venue, photographer, DJ and flowers. 

The girls were not terribly excited at first thinking it would be weird to have a wedding with no groom.  Honestly, I did too since we had no idea what we would do for the ceremony.  As the days went by and we formulated a plan, we all began to see how special and amazing the celebration would be. We were not only giving Akhil the gift of seeing his daughters walk down the aisle, but we were also giving ourselves memories for a lifetime.  I am so glad Deanna had the courage to call me to tell me her crazy idea of a wedding with no grooms!  It was a day we celebrated - a day that never would have occurred if it weren’t for ALS.
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You can watch the ceremony here:    WATCH 

This wedding preceded my niece’s actual wedding in Indiana which we were to leave for three days later.  The girls and I said goodbye to Akhil on Thursday, August 2 expecting that he might be gone when we returned.  Our youngest daughter, Jordan, said, “See you when we get back!” to which Akhil closed his eyes to mean “no”.  Jordan tried again, “See you on Wednesday!” Again, Akhil responded with closed eyes to indicate “no”.  Jordan’s eyes welled up with tears at the thought of her dad’s death as she left the room to go to the car. 

We left with a hint of sadness thinking Akhil might be gone by the time we returned. We are headed back home today.  In spite of his predictions, Akhil is still there waiting for us.  We have mixed emotions about that.  We were expecting to return to something unfamiliar:  an empty hospital bed in our home. We thought we would be celebrating the end of Akhil’s suffering and be free of all the restrictions ALS has put on us.  Instead, we are returning to the familiar and a state of being we have come to know as normal.

ALS had reinforced the idea that we cannot predict the future, nor should we live for it.  We must live in the moment enjoying and celebrating where we are today no matter how weird it may seem. Today we are returning to what we know, a life with ALS, and as long as we remain here, we will continue to find joy right where we are.  I hope no matter where you find yourself in life, you can always find joy and reasons to celebrate.

​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.   
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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. 

As I write this, I am sitting in bed looking out the windows where there are beautiful fireworks filling the sky.  In spite of the loud noise, Akhil is sound asleep in his hospital bed nearby.  Our house sits on top of a hill and from our vantage point, we can see many of the neighbors’ displays as well as the ones put on in the towns across the river.  It is truly spectacular.  I am watching it alone this year reminiscing in my mind of barbecues on our deck and time with family and friends on previous July 4ths.
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Akhil and I are approaching our own Independence Days.  Akhil is surely nearing his final days.  He is sleeping all but a few hours every day.  His body is ravaged with battle scars and it seems incapable of healing itself.  He has sores all over – one on his head from the strap of his AVAP that he wears almost constantly now, one under his nose from the AVAP mask, his feet are covered with bruises and sores from simply resting in one place for too long, the skin on his bottom has peeled away leaving a raw bloody surface that is incredibly painful to sit on and his mouth has sores where the suction tip has sucked away patches of skin as we tried to remove the mucous that had collected.  Each day seems to bring on a new wound but this soldier just refuses to surrender. 

I asked Akhil a couple of days ago if he felt like the end was near and he said, “No” by squeezing his eyes shut.  I asked him if he WANTED the end to be near and he said, “No”.  Unfortunately, regardless of what he wants, his body seems to be saying that his days are numbered.  It seems to be using different means of inflicting pain in order to elicit a surrender from Akhil.

It is hard to watch someone suffer so much.  It is really hard when you are the one causing the pain.  Akhil defecated in his brief this morning so I had to clean him up.  Normally, this is a fairly speedy process taking about fifteen minutes or less.  Today, because of the condition of the skin on his bottom, it took about an hour.  Part of that was because I had to proceed strategically and delicately as every touch of the skin caused it to drip bright red blood.  The other reason it took so long was because I had to take breaks to regain my composure as the nausea hit me in waves when I thought about how much pain I was causing Akhil with every touch.

Soon, Akhil will be free of all this pain and suffering. 

When Akhil is free, I will also gain a freedom, independent of him, no longer responsible for his care and well-being.  I will miss him so much but the reality is that I have been missing parts of him over the last seven years and almost all of him for the last couple of years as ALS has taken him one piece at a time.    

While I am looking forward to my independence, like all freedom, it comes with a high price paid by someone else. I am grateful to Akhil for fighting a good fight and for being a relentless soldier. He set a fine example of how to persevere even when times are tough and how to surrender to God's plan even when it is tempting to take matters into your own hands.

I want Akhil to be free of pain and suffering. One day fairly soon, we will all celebrate his freedom on HIS Independence Day.

July 3, 2018 - Akhil loves it when the girls sing - They treated him to a few moments of ridiculousness - yes, that is a real snake wrapped around Ashley's neck... I never thought I would have a dog and certainly never a snake in my house as a pet!  

​We have been living with ALS since July 2011.  Since then, we have been dying with it slowly but most notably feeling closer to death than life over the last 3 ½ years.  My husband, Akhil has been on hospice since December 2014 and the doctors and nurses that care for him can’t believe he is still with us.  They have asked me if I think he is hanging on for some reason.  “Yes”, I think to myself, “FOMO”.
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Akhil asked me to write a blog for him this week.  When I asked him if he had a topic in mind, he fervently gestured “yes” by raising his eyebrows and opening his eyes wide.  We went through the tedious process of me trying to elicit a response as I said a series of numbers and letters that allowed him to spell words.  Akhil spelled out “Left Behind”.  Knowing that he was a fan of that series of books by Tim LaHaye and Jerry Jenkins, I asked him if he meant a blog about being left behind from a spiritual perspective.  He responded, “No” by closing his eyes.  I asked if he meant left behind from a physical perspective to which he responded “Yes” by raising his eyebrows and opening his eyes wide.
Hmm…  Interesting idea.  Akhil has suffered from FOMO (Fear of Missing Out) from as long as I have known him.  He would always want to be the first to arrive at a party and the last to leave; better yet, he wanted to be the host of the party.  As I watch Akhil labor for each breath, I am convinced that he is clinging to life because of FOMO.  Perhaps he wants me to write about what life will be like for those of us left behind after he is gone so he can “experience” it and feel as if he is not missing out.
Akhil, life will continue here on earth after you are gone.  Most people will live their lives oblivious to the struggles you have dealt with and not noticing that you are gone.  There will be a close circle of people who have walked with you through this entire journey who will mourn a life lost too soon and yet, a part of them will rejoice that your suffering is over.  Those of us left behind will continue to deal with life’s hardships, handling daily sorrows and joys without being able to share them with you.  We will be sad that you are not with us but as the planet still rotates, our lives move onward as we journey toward fulfilling our own destinies.

While probably not your intention, I think the real purpose in writing this blog is not to focus on those of us being left behind, but rather on all that you will be leaving behind.  Akhil, I assure you that compared to where you are going, you will not be missing out on a thing.  You will probably wonder why you didn’t surrender to this disease sooner so you could leave the worries and pain of this world behind and enter the paradise of total healing.  Yes, you will leave your family and friends behind to finish out the plans for their lives but you will also be leaving behind   

• a body that refuses to cooperate with you,
• fear of not being able to take your next breath,
• being dependent on others to bathe, dress, feed, scratch, shave, and care for your every need,
• the isolation of spending day after day watching television passing time because everyone around you is too busy to simply sit down with you,
• loneliness,
• sorrow about thoughts of what your life would have been,
• sickness,
• pain.

You will be entering a place of
                Perfection,
                Peace,
                Populated with loved ones,
                Joy,
                Total Healing,
                Contentment.
 
There will come a day when you can rest in this vision of the place you are going, when it will be more appealing than what you are leaving behind.  On that day, I have a mental picture of you standing crossing your arms across your chest, looking up to the heavens and just letting go, falling backwards into the waiting arms of Jesus where there will be no more FOMO.

​November 30, 2017

“Am I close?” Akhil asks me as I prepare to say goodnight.  He is seeking answers about a subject I know next to nothing about.  My only experience with death was when I was 25 and my dad died after a two-year battle with lung cancer.  I bend over and lightly kiss his forehead and reluctantly admit the words he is longing to hear, “Yes, I think it will all be over soon.”  Upon hearing that, Akhil’s eyes well up with tears but he closes them quickly seeking the peace of slumber.

It has been a long battle with ALS and I think we are both weary and yet refuse to concede defeat.  For six and a half years, Akhil has known his fate.  For five years, he has required a caregiver as the disease gradually stripped him of his abilities.  First, he needed help buttoning and zipping his clothes, then he needed help eating until little by little he needed help with everything. 

As I leave Akhil in his hospital bed and settle into what was once the bed we shared, I listen for his breathing.  I hear the AVAP machine forcing air in and wait for him to exhale.  The oxygen machine is out in the hall feeding him through a long tube connected to his AVAP.  I can hear its pump slowly circulating to generate the oxygen Akhil needs for his next breath. Each breath is slow and deliberate with a pause in between. At times, the pause is longer and I wait expectantly for the beginning of the next breath.  Once I am convinced that the breaths are coming in a steady stream, I fall asleep.

When I awaken, I lie in bed for a few minutes and listen for the sounds of breathing coming from Akhil.  A couple of days ago, when I awoke, I didn’t hear anything except the rush of oxygen into Akhil’s mask.  I laid still waiting and wondering if this was it.  It seemed like minutes passed as I had time to question how I would tell the kids, would I wake them up at this early hour to tell them or just let them sleep?  Before I could determine an answer, I heard the sound I had been waiting for.  Today wasn’t the day after all.  Akhil will have another opportunity to ask, "Are we there yet?"

Laura and I were asking Corinne about how Kelly was doing. Sorry, let me introduce to you the cast and a brief back story. 
 
Laura and I used to have a Bible study in our home a few years ago. One of the members shared that her daughter, Kelly, is suffering with Multiple Sclerosis and needed some help during the day. To my surprise, Corinne, volunteered to help! She  did a great job, so much so that Kelly's family sent her care packages when she was at college. Also, they are very generous to Corinne.
 
You might be wondering why I was surprised with Corinne volunteering. History.  
 
When Corinne was 4 years old, we had fresh dirt spread on our yard preparing for sod. Unfortunately, it rained, postponing sod. I took that opportunity to play in the mud! Corinne walked to the edge of the patio, evaluated the situation, and did an about face and went back inside! That, ladies and gentlemen, describes Corinne!
 
Getting back to our conversation with Corinne...
 
Corinne described Kelly's situation and demeanor. The more Corinne talked, the more I could identify with her struggle - questions with no answers. Why me? Is there a God? If God doesn't exist, is death the END? 
 
Hopeless, defeated, done!
 
I felt an urge to write to Kelly, as I wrote, I realized everyone struggles. It could be health related or losing everything with a hurricane. The list of struggles is endless. With Kelly's permission my message will be converted to a blog. Hopefully this blog will give you a strategy when you find yourself in a nosedive.

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 Kelly, I understand where you are. I find myself bouncing between, "Woe is me,” and, "God, thank you for all your blessings.”  I confess, I've been suicidal and a few hours later, I am laughing, enjoying my family and thankful for another day. I tell you this because we need to understand that, "This too will pass.”
 
Before I dive into methods of getting out of that funky mood, you need to remember that we are in a spiritual war! The enemy loves to see you asking, Why me? Is there a God? He laughs with glee when you're feeling hopeless, defeated and done! The pain is designed to make warriors break. I believe God has trusted us to turn to Him when we are under attack.
 
I have some strategies that might help - God’s words, songs and laughter!

​Laura asked me to share my thoughts with... everyone. I simply asked, “Why would anyone care to hear the ramblings of a mad man?"
 
She told me, “Write. You must have thoughts racing through your mind.”
 
I shook my head, clearly indicating,  “No.” I pointed out that typing one letter at a time is beyond frustrating!
 
Then she gave me that look every husband has received, “Ok, you can do what you want, don't consider my feelings."  When she really means, “Be reasonable, do it my way!" Ladies, don't bother denying this is part of your arsenal. 

Here we go... fire hydrant meet glass:
 
~A simple yet profound observation - watching my daughters express being bored with being children and are in a rush to become adults, and then long to be children again. I was no different; however, the youth of today seem to have an accelerated entry into adulthood.
 
~People in general sacrifice their health to make money and then sacrifice their money to restore their health. Perhaps my MS and ALS are precipitates of my choices. PERHAPS. Or they are part of being in a fallen world. 
 
~I’ve learned that what I have in my life pales in comparison to who I have in my life.
 
~To my children, actually to all children, actually to everyone: Nothing good will come out of comparing yourself to others. You're basing the comparison on a snapshot of their life. Photos can be deceptive.
 
~I have learned that it only takes a few seconds to cause deep wounds in persons we love, and that it takes many years to heal them. So ask yourself, “How will this argument or scolding end?" Put yourself in that person’s shoes. Ask yourself, “Would you like to be spoken to that way?" Remember, words are like pawns on a chess board, they can't be moved back! 
 
~Learn to forgive by practicing forgiveness. It is important to forgive yourself. Give yourself a break, even Jesus blew it with one out of twelve of his followers. (Calm down, just joking.)

~Benjamin Franklin said, “Wealth comes from increasing income and decreasing wants.” That is wise advice. I want to focus on "wants”.   You have the same disease that I have. I’m not talking about ALS, I am talking about the demon called “flesh” which is always hungry. The flesh wants food, power, money, sex, pleasure and comfort right now! 
 
One word to describe this demon: INSATIABLE. This demon lies with promises of a better tomorrow if you sacrifice today - your family, your relationships, even your health!
 
How can this demon be exorcised?  If we turn to the Bible, Jesus taught a remedy.  He says, “Deny yourself, pick up your cross and follow me!"  I struggle with this one because I have been forced to give up most activities that gave me pleasure from talking, eating and drinking, to just scratching myself. Regardless, I still have a ways to go.
 
Surprisingly, the more I give up, the more I experience freedom. I am becoming aware that my "wants" are pretending to be "needs"!   In other words, I have very few needs for me to live. (I have to admit that I would love to be able to scratch myself!)
 
~Money: People have said, "According to the Bible, money is the root of all evil." Agree, yes or no? If you disagreed, you would be correct.
 
The Apostle Paul, in his first letter to his young disciple, Timothy, said, “For the love of money is a root of all kinds of evil. Some people, eager for money, have wandered from the faith and pierced themselves with many griefs.”  (1 Timothy 6:10). 
 
Money vs. loving money itself is the problem. Think about King Solomon or King David, they were blessed by God with wealth. God is interested in the heart. Money provides options, having money gives you flexibility.  

​This text took me, literally, one month to type. I got tired and quit many times but something inside kept urging me to keep typing. Someone needed this message. My question is, did this speak to YOU? 

​Father’s Day 2017
Father’s Day has always been a day of fun and celebration since our first child, Ashley, was born in 1993. I helped Ashley make handprint crafts to show her adoration for her father.  As our family got larger with the arrivals of Corinne and Jordan, the celebration got bigger.  When the girls were small, I helped them make gifts, put on plays and performances showing their dad how special he was.  As the girls got older, they thoughtfully came up with ways to honor their dad.  It has grown into a friendly, and sometimes fierce, competition of who came up with the best gift.  They have serenaded him with songs, created parodies and presented amazing art projects all to show Akhil that he is a special dad.  (The video below is a birthday song but this is the type of "gifts" we give.)

As ALS has stripped Akhil of so many abilities, I wondered if it had also stripped Akhil of the ability to be a dad in the eyes of our girls.  In talking to them and as they celebrate him today, they make it quite clear that Akhil is still their dad and fills an important role in their lives. 
While there are things Akhil cannot do, there are many things crucial to a good relationship that he can do; things that I consider gifts from ALS.  The disease has taken away Akhil’s ability to hug his daughters but he can express his approval, admiration and love for them with his facial expression. The girls can see the joy radiating from his face and they know they have made him proud.  On the flip side, there is no need for verbal chastisement when they need correction as Akhil can express all he needs to say with a look.  ​

​ALS has taken Akhil’s ability to speak but he can still communicate using his eyes to spell out words.  When he “speaks” his words have been carefully selected.  There are no words spoken out of anger or impatience that he regrets (as may be the case with some of us).  Every word is carefully thought about and each message delivered concisely to conserve his energy.  We all know that when he “speaks” he is passing on a nugget of wisdom or something very important to him.
ALS has taken Akhil’s ability to work.  Prior to ALS, Akhil was immersed in his career and travels frequently took him away from the family.  He missed out on concerts, recitals and relationship-building moments because of his job.  Now that he is not working, he is always available.  The girls come to him and recount the goings-on of their days, something he was not part of when he was working.  Most importantly, he has been given the gift of time, time to listen, really listen to his children without other obligations pulling at him. 
While ALS has taken a lot from Akhil, it has given to him as well.  Akhil has been given time to build relationships with his daughters.  He knows them better now than before he was sick because he has time to listen and they seek him out to talk to him.  They feel closer to their dad as a result of the constant communication with him.
ALS has given us a bit of a glimpse of our heavenly Father through Akhil.  Like Akhil, He is always there for us, patiently listening to us voice our every thought from the trivial to the life-changing.  Just as the girls feel close to Akhil the more they talk to him, so too, do we feel closer to God the more we talk to Him.  We feel Akhil’s love for us even though he can’t express it verbally or physically, just as God’s love.  It is a silent love that we can rest in knowing is there.
This Father’s Day, we recognize that gifts aren’t always in the form we expect.  There can be joy in times of hardship and sadness.  When it seems things in life are being taken away, chances are, things are also being given - we just have to look for them.
 
 

The Columbian, Vancouver's newspaper, recently wrote a follow-up story and created a video of Akhil's ongoing battle with ALS.  They did a great job of capturing our family's spirit.  The filming was done in March for the article when Corinne was home on spring break.

By Marissa Harshman

RIDGEFIELD — The music is loud, filling the back bedroom and seeping into the otherwise quiet house. Jordan Jhaveri, 17, sits in front of the computer, searching for a song to play. She settles on a new Selena Gomez song. Then, she turns to her dad.“You don’t like this song?” she asks.
Akhil blinks his eyes once — his signal for “no.”
“Too bad,” Jordan shoots back with a smile. “Learn to.”
Akhil smiles. Music has always been a way for him to connect with his daughters.
Akhil’s oldest, Ashley, 23, takes over at the computer. She picks a cover of a Taylor Swift song. She plops down on the hospital bed in her parents’ bedroom and begins to roll up the sleeves of the flannel shirt she took from her dad’s closet.
For the better part of an hour, the girls take turns choosing music and telling each other about things happening in their lives. They sing at the top of their lungs. They dance around the room.
Ridgefield man continues battle with ALS with family’s love and supportby MARISSA HARSHMAN

All the while, Akhil sits in his wheelchair and watches. He smiles when the girls belt out the lyrics to “Bohemian Rhapsody.” He tears up when they play his favorite song, “Come Sail Away,” by Styx.
Speaking is impossible and communicating via his computer is tedious. So, for the most part, Akhil is quiet in the lively room.
When the girls turn off the music and prepare to head their separate ways, Akhil has a request. He uses his eyes to spell out the words on his computer and uses a trigger next to his leg to direct the computer to read the words out loud.
“Suction, please.”
No cureAkhil, 51, was diagnosed with amyotrophic lateral sclerosis in July 2011. ALS, commonly known as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. The disease causes nerve cells to gradually break down and die, leading people with ALS to lose the ability to control the muscles needed to move, speak, eat and breathe.
There is no cure. For most people, the disease is fatal within two to four years of the diagnosis.
In November 2015, The Columbian produced “A Strong Man,” a three-day series of stories, photos and videos about Akhil Jhaveri and his family as they navigate life with ALS.
At first, Akhil seemed OK physically. He would stumble from time to time, and his speech would sometimes be slurred. But, slowly, the disease progressed and the list of tasks Akhil needed help with grew longer and longer.
Akhil has lost the ability to move his limbs. His neck strength has dwindled, making it difficult for him to lift his head. His breathing has become more shallow and labored, particularly in the last year or so, and he’s constantly battling an overproduction of saliva that requires regular suctioning.
As his condition declined, Akhil managed to hold on to his ability to communicate. He spoke in fragmented, breathless sentences that were difficult for those who weren’t around him often to understand, but he could communicate.
Now, ALS has taken that, too.

Akhil relies almost entirely on his computer to communicate. His wife, Laura, and daughters can sometimes anticipate his needs and ask yes or no questions to pinpoint what he wants. Akhil blinks once for “no,” raises his eyebrows for “yes.”
Laura and Akhil have also memorized a chart of letters they can use to spell out words. Laura calls out row numbers — one through six — and each row has a corresponding set of letters. Akhil raises his eyebrows when Laura calls out the row he wants. She rattles off the letters of the alphabet in that row until Akhil signals she’s hit the right letter. Then, they move on to the next letter in the word.

​Spelling out words takes time, but it works well for times when the computer isn’t set up.
For Akhil, losing the ability to communicate means he’s gone from participating in conversations to observing.
“I equate it to how a person with one leg would fare in an ass-kicking contest,” Akhil said via his computer. “I try, but it is frustrating because by the time I respond, everyone has moved on to another topic and everything I’ve painstakingly typed is irrelevant.”
“The one-legged man and I are tired of trying to keep up,” he added. “So, we’ve resigned ourselves to being spectators.”
That’s not lost on any of the Jhaveri women.
“I can still tell him stories about me and my day and what makes me think of him, and it’s great because you can still see his face light up. But when it comes to hearing some witty banter back, that’s the one thing,” said daughter Corinne, 21, her voice trailing off.
Physically, the labored breathing and difficulty swallowing has made life more uncomfortable for Akhil. In addition to struggling to breathe, the buildup of saliva in his mouth and throat can, at times, make Akhil feel like he’s going to choke.

And as Akhil’s digestive system slows down, he has a harder time tolerating formula and water without feeling bloated. And, Laura said, it’s important not to force it because the fluid could back up and cause Akhil to aspirate, drawing the liquid into his lungs. In most cases, the terminal aspect of ALS is tied to respiratory issues.
Jordan — a junior at Ridgefield High School who spends her days in the Running Start program at Clark College — is the only of Akhil and Laura’s three daughters who lives at home. She’s seen her dad’s decline firsthand. But, for that reason, she doesn’t notice the gradual changes, just realizes that things are different.
For Ashley, who recently graduated from Eastern Washington University and lives in Spokane, the decline is more obvious.
“Every time I leave, there’s a forgetting period,” Ashley said. “I always know my dad is sick, but I don’t think about it if I don’t have to.”
“So it’s always kind of jarring to see him because it’s like, ‘Oh, I forgot how bad it was,’ ” she said. “Every time I come home, it’s a new reminder of what’s going on.”
Time squeezeIn the last year, Laura has resumed her role as Akhil’s primary caregiver. Before, Akhil had a full-time caregiver who stayed overnight five days a week. Laura still has help from a couple of paid caregivers, but they only spend weekday mornings with Akhil. That allows Laura, 51, to have about 3½ hours each day to take care of errands and other work outside of the house.
Most often, that time is devoted to activities related to her expanding dessert business, Killa Bites.
“It’s a challenge to live my whole life outside of these walls within those hours,” Laura said.
Despite the stress and the often hectic days, Laura charges on.
“It’s important my girls see me stick it out and love their father the best I can,” Laura said. “I never, ever wish that he weren’t here. People may find that hard to believe because it’s a lot of work … but there’s not a moment I wish he weren’t here.”

That’s not to say some days aren’t harder than others. Not only is the disease isolating for Akhil, it’s a source of loneliness for Laura. And the daily reminders of the life she once shared with her husband — and the dreams she had for their future — can be tough to face. Something as simple as walking into the closet in their bedroom can flood Laura with memories, with reminders of how things once were.
She can picture her husband wearing his favorite outfit, bouncing out of the closet to take her on a date. She can see him wearing a button-up shirt and tie, heading out for a day at the office. She can imagine him dressing up in a suit, ready for an evening out.
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But the reality is Akhil hasn’t even worn pants in the last six months. As his ability to help move his body deteriorated, Laura found it too difficult to manipulate his limp body into pants. Instead, a sheet is draped over his lap.
So when it came time to start spring cleaning, Laura decided to tackle the walk-in closet. She wasn’t prepared for how difficult the simple task would be.
“I felt like I was conceding something to ALS,” she said. “I felt like when I got rid of some of his clothes, I was saying goodbye to a piece of Akhil.”
Realistically, Laura admits, she could have gotten rid of all of Akhil’s pants with zippers and shirts with buttons. He will probably never wear those again. But she couldn’t bring herself to do it.
“I still cling to that hope that maybe he will, maybe there will be some breakthrough that helps people with ALS,” Laura said. “Clinging to that hope is one of those things that allows me to get through yet another day dealing with this.”
For Akhil, knowing that he’s still making a difference in people’s lives — that he’s inspiring others and touching their lives in some way — is enough to keep him going.
“When I received the diagnosis, I just kept living,” Akhil said. “As things progress, I do the same thing. I just keep living.”
“As long as I get love and give love, life is good.”
Marissa Harshman: 360-735-4546; marissa.harshman@columbian.com; twitter.com/MarissaHarshman