​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.
​

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

​“I am dying”, Akhil spells by raising his eyebrows to select a letter as I say the alphabet. 
                                                “Me too”, I think to myself.
I ask him, “How do you feel about that?”
                                                “It sucks”, resounds in my head.
He responds by going through the alphabet again, “I will miss you.”
                                                “Me too.”

Is it ever easy to let go when someone close to you is dying?  I think it is safe to say that we selfishly want our loved ones to cling to life, to be with us a little longer, fighting for every breath here on earth unwilling to concede defeat to whatever is battling inside them.  There comes a point when the person realizes they are losing and they begin to question which is worse, the pain of holding on or the pain of giving in.  If we are courageous, we question essentially the same thing, “Which is worse, the pain of their suffering or the pain of letting them go?” 

As Akhil struggles for breath, I feel a tightness in my chest as I acknowledge that the end of this journey is nearer than I would like.  A part of me is dying along with him.  The part of me that imagined growing old together is withering inside.  The idea of retiring somewhere warm and spending our golden years traveling the world has to be put to rest.  The vision of Akhil being healed and reaching out to take my hand or embrace me will have to reside permanently in my dreams.

Perhaps it is difficult to say “good-bye” because we are not only letting our loved one go but also a piece of ourselves.  It seems like that departure will leave us wondering if we will ever feel whole again.  Will we miss that part of ourselves as much as we miss the one who is gone?

In spite of this journey winding down for us, I will never give up hope, hope for a cure for ALS, for a treatment that can restore function to those already afflicted with the disease and still battling, and hope that my heart will go on.  

... for loneliness according to Laura

Prior to living with ALS, loneliness was not a companion we were familiar with; but that has changed.  Loneliness has been embracing my husband for a while now so I have become intimately acquainted with it.  Like fog moves into the San Francisco Bay, loneliness crept into our lives matching the magnitude of the disease’s progression.  If we had been looking, we would have seen it coming but before we knew it, it had enveloped us.

When we received the ALS diagnosis back in 2011, the troops of friends rallied around us encouraging us with their battle cries of “You’re not alone” and “How can we help?”.  As the months of the battle turned into one year, then two, the troops began losing their enthusiasm and falling away.   As their numbers dwindled, we should have seen the fog of loneliness rolling in.

Two years seems to be a good length of time to be at war.  When the battle extends much beyond that, people begin to question, “When will this end?”  We have been in this battle for five years, eight months and 27 days.  Instead of it bolstering their enthusiasm that we are still in the fight, it seems to dampen their spirits that things haven’t come to a speedy conclusion.  The weariness of being at war for so long takes its toll on us physically and mentally, amplifying those feelings of loneliness.  It seems as if people prefer that we give up the fight so they can rally again for a brief time of mourning hoping to comfort us in our time of defeat.  We, unlike them, recognize that the battle is worth the fight no matter how long it rages on so we go it alone without the troops by our side.  Now we battle not only the disease but also attempt to quell the fog of loneliness that rolls in each time there is another setback.

Take a look at that word “loneliness".  Notice the words “one line” embedded in there?  “One” is the root cause of loneliness, as in one person, isolated, alone.  The other part of loneliness, “line” is interesting to me.  It makes me think about the lines we are unwilling to cross, lines that establish our comfort zone.  My contention is that if each of us were willing to get a little uncomfortable, perhaps we could be the light in the fog of loneliness.  It wouldn’t take much.  You may be thinking that you couldn’t possibly visit someone in Akhil’s situation because it would make you too uncomfortable.  Ok...  Perhaps a visit isn’t the only way you can connect.  How about sending a Facebook message or a text that simply says, “I am thinking of you today!”  That isn’t too much of a stretch, is it?  I guarantee the person on the receiving end of that message will smile and just for a moment will not feel so alone.  Isn’t it worth it to cross that line stepping just beyond your comfort zone?  Can you cross “one line” today to break through someone’s fog of loneliness for a moment?
  

I'm sure some of you remember those commercials with the frogs repeatedly saying, "Wassup?" People are asking me the same question, "You haven't posted a blog in a while, what's up?"

 I still have thoughts, however, typing exhausts me. It is so frustrating! I know what letters that I want to type but my neck has to cooperate. Why does my neck get involved? That is a good question. The typing process is very tedious for me. A camera is mounted on the computer screen that looks for a reflector on my glasses. When I move my head which is also moving the reflector, I am actually moving the mouse. I have to point the reflector towards a letter while I move my left knee to compress the clicker to type each letter. The computer also prompts for words to shorten the process a little. On a good day, it takes several minutes to type a sentence. On a bad day, it is nearly impossible. Therefore, look for a blog monthly. 

I write because with ALS I have more time on my hands than I did when I was "normal." Have I ever been normal? I spend my time escaping reality with TV, Netflix or YouTube. I also play chess online with a completely anonymous community. Occasionally, I will have a visit with someone from my past. This is pretty much how I spend my time.

If I have energy I will write my blog. I ask God, "What should I write about?" The answer came to me through Ashley, my oldest child. She was visiting from Spokane. I could tell she was struggling with my progression. Since she doesn't see me every day, it makes sense that she was taken aback with my situation.

As she was leaving, through eyes filled with pain, she asked, "Dad, what is the point of life? I mean, why are we here?" I found myself realizing that my answer will be different than the normal Akhil would have given.  Ashley, I dedicate this blog to you! 

Why are we here? I remember this quote from my younger days. I will not tell you who wrote it right away, I will disclose the author at the end. I read a post some time ago where the author agonized over these same questions pertaining to this quote:

“Tomorrow and tomorrow and tomorrow creeps in this petty pace till the last syllable of recorded time. And all our yesterdays have lighted fools the way to dusty death. Out, out brief candle! Life is but a shadow, a poor player that struts and frets his hour upon the stage and then is heard no more. It is a tale told by an idiot, full of sound and fury, signifying nothing.”

Is that true? Is life — your life — my life, a mere shadow? Are we strutting and fretting upon the stage of some cosmic comedy club? Is life just a tale told by a bad comic, full of noise and nonsense but nothing else, nothing of value? What is the point of human existence, the purpose of your life and mine?

Those are very big questions. But, unfortunately, most people never quite seem to figure it out. It’s not that they fail to try. To the contrary — most people spend the greater part of their lives being told, and so believing, that they must figure out what it is that God put them on this earth to do. And, this becomes their greatest aim and their greatest disappointment, too. Perhaps you have those same questions floating around in your head. 

When life disappoints us, these questions surface and leave us with a hollow feeling. Ashley, you're not alone! Paupers, whom history will forget, to wealthy people blessed with opulence and power, have all asked the same questions. For example, you may recognize this author, “Vanity of vanities! All is vanity. What does man gain by all the toil at which he toils under the sun? A generation goes, and a generation comes, but the earth remains forever.”

If you guessed, Solomon, you would be correct. After surveying all he had, King Solomon asks, "Is that it?" Understand this, the Bible tells us that nobody has been or ever will be a wealthier or wiser person than Solomon. In spite of his dark realization, Solomon tells us to accept God's gifts and enjoy them.
​
Solomon does not say, "Eat, drink, and be merry, for tomorrow you die!" Instead, he advises us to trust God and enjoy what we do have rather than complain about what we don't have. Life is short and life is difficult, so make the most of it while you can.  

​I really like this object lesson. I was at the tulip festival when I saw this teenage boy continually complain about everything from the parking lot (which has lots of gravel); to how bored he was looking at stupid flowers. At the same time, a mom, who with her 7-9 year old daughter was squealing because she found a tulip that matched her dress. They went on with pointing out something, anything beautiful. Apparently that was the game, I know, because the girl kept shouting the score. Two children at the same place, looking at the same flowers, but having completely different experiences!
 
Ashley, maybe you were really asking, “What is the point of MY life? Why do I keep fighting when I could ask for an early check out?" I have considered it a few times, especially when I defecated on myself, leaving Laura to clean me! Humiliating! How much more do I need to suffer? Everything is so far from what I envisioned our family would be doing today, what I’d be doing today! 
 
A better question might be, “What stopped you from ending the suffering?"
 
The tulip story!  “Huh?"

Ashley, my life today is full of "rocky roads" and stupid things like typing; however, I have a significant amount of beautiful and wonderful things happening in my life. Here are a few of them in no specific order: 

• Writing the blog and the process of finalizing it with Lori Davis and Laura. 
• Spending time with the whole family.
• Escaping by watching anything worthwhile. 
• Talking to God all the time. Telling Him, He sucks!  Thanking Him for an amazing life. Laughing when He tells me something funny like asking me if I’m going insane with conversations with air?
• My favorite is short visits from anyone, especially if he or she is comfortable enough to move my arms and legs. Lack of motion results in pain which I’ve accepted, so ANY motion is met with a smile.
• Don't get too excited, Ashley, but I laugh at how the dog acts like a person and watching your mom with him is magical. I promise you, when I see her with the dog, I wonder who she is!

The point being, I could look for the garbage, which is so plentiful and wallow in misery, or look for beauty and be joyful. 
 
I will close with this thought: No matter what happens to me, I am thankful to God for giving me the opportunity to say, "Yup, that girl graduating with honors and wearing a wolf costume under the prestigious black gown, that's MY Ashley!” Then the group at the Ray Hickey House, watching with me said in unison, "Of course it is!"
 
Ashley, the point of my life is to be your dad!


BTW: The first quote was from Shakespeare’s Macbeth.

​January 21, 2017 - by Laura

As one of my goals for the New Year, I plan to deep clean my entire house.  Sounds fun, right? On my goal poster, I have listed each room and closet so I can check it off as the detailed cleaning is completed so I can feel a sense of accomplishment.  We have lived in this house for 6 ½ years, since July 2010, the longest we have ever lived in one place.  We used to move every three or four years.  An impending move would prompt us to go through most of our belongings and question whether or not they were worth packing and transporting to the new place.  Since we have been here so long, it is time for a purge.

Today I began tackling the master closet.  Of course, I started with Akhil’s side of the closet thinking it would be easier and faster to go through his things than my own.  I tend to hold on to clothes just hoping they will come back in style.  My daughters recently convinced me to part with some of my 80’s wardrobe insisting that the shoulder pads will not be coming back in style any time soon.  I reluctantly conceded although I swear this past fall Macy’s had an embellished jacket that resembled the one Michael Jackson wore in his “Bad” days.  I just know I should have waited a little longer and my shoulder pads and baggy pants would be back in style…

Going through Akhil’s clothes was harder than I had imagined.  I was always the one to go through his closet when we would move and give away things that were no longer in style or simply not suitable for an executive.  Today was a different sort of purge.  Today I was making space to organize condom catheters, suction tubing, a Hoyer lift, formula, syringes and all the other paraphernalia that has slowly taken over the closet over the past few years.

Akhil has had ALS for 5 ½ years, and has needed assistance dressing for four of those years.  He used to enjoy wearing suits and ties but, these days, he doesn’t even wears pants - we simply cover his lower body with a sheet since he spends his days seated and immobile in his wheelchair.  He prefers a simple polo on top because it is easy for me to get it on and off without contorting him too much.  Akhil’s clothing needs are pretty simple; a few t-shirts, pull-over sweaters, a sheet and socks.
​

​Roberto was on his way to church when the pastor asked him how he got a black eye. “Well,” he said, “You know Big Sister Sally. I was sitting behind her at service.  When we stood up, I noticed her dress was stuck in her crack. Being the gentleman that I am, I reached over and pulled it out. I had no idea she would get so angry. She turned around and punched me."
 
The pastor said, “Roberto, you know better than that!"
 
The next week the pastor stopped Roberto who had another black eye.  “Now what happened to you?"
 
Roberto said, “I am so perplexed. I was at church with my buddy and we were sitting at service and guess who sits in front of us? You guessed it, Sister Sally!"
 
“Roberto, you didn't pull on her dress again?” asked the pastor.
 
“I did not! But when Sister Sally stood and my friend saw her dress was stuck; being the gentleman that he is, he reached over and pulled it out. I remembered how mad she got for having her dress pulled out so I pushed it back in." 

​I tell you that story (not true) because of the situation I find myself in regarding my question which I posted a few weeks ago. I ask myself, “What do I have to do to be healed?” 
 
I find scripture that tells me if I am persistent I will get what I’m seeking. I must not be being persistent enough. Off I go being persistent. As soon as I start, I get distracted and realize I can't do this. 
 
Then I find another scripture, “Ask and believe you have received it and it will be yours.” I must not have enough faith, that is my problem.  Off I go being faithful, but my faith wanes and I realize that I need to be persistent, round and round, faith, persistence. I try to be more faithful and persistent. I can't seem to do either let alone both, I feel trapped.
 
“STOP,” I hear in my mind.
 
I pause and it comes to me, John 8:32, “You will know the truth and the truth will set you free.”
 
When I felt trapped by the word, I understood it wasn't the truth. The word properly understood should free, not condemn or confine. Regardless, I felt I needed to do something, anything. Then I heard the second scripture, Psalm 46:10, “Be still and know that I am God.”
 
What kind of instructions were, “Be still.” God, you just don't get it! I am in a battle, be still, more like attack with an army, that makes more sense. Nonetheless, I kept hearing, “Be still and know that I am God.”
 
It was time to understand the meaning of this phrase. 
 
It turns out there is far more to this directive than I realized. First of all, this direction was given to the Psalmist while engaged in a tremendous battle when God says, "Be still.”
 
This is a call for those involved in the war to stop fighting, to be still. The word still is a translation of the Hebrew word, rapa, meaning “to slacken, let down, or cease.” This is for two people fighting until someone separates them and makes them drop their weapons. It is only after the fighting has stopped that the warriors can acknowledge their trust in God. 
 
I misinterpreted the command to, “be still” as “to be quiet in God’s presence.” While quietness is certainly helpful, like Roberto in the joke, I missed the point. The phrase means to stop frantic activity and to be still.
 
The scripture continues with, "Know that I am God."  Know in this instance means, “to properly ascertain by seeing” and “acknowledge, be aware.” I realized acknowledging God impacts my ability to be still.  How? I know that He is omniscient (all-knowing), omnipresent (present everywhere), omnipotent (all-powerful), holy, sovereign, faithful, infinite, and good. Acknowledging God implies that I can trust Him and surrender to His plan because I understand who He is.
 
Conclusion: Stop with the frantic behavior.  Recognize who God is and let that knowledge bring you peace.  If you are struggling as you seek answers with a job, spouse, child, school or whatever, stop. Rest.

God, is that you? I have questions. How do I know if the voice inside my head is God or just an active imagination?

I hear, "You will be physically healed." I really don't know if I want it so badly that I think it is God. I don't have the ability to discern this paradox, a forest for the trees, situation.

I am so ingratiated in the disease that I can't see the light. Help! The ALS will not leave me for one minute. Relentless!

Please leave some comments.

The holiday season is here. Some might not be as excited about the holidays as I am for several reasons. We will talk about that later, but let me tell you why I am excited. You see, since I have Lou Gehrig’s disease, I don't know how many more holiday seasons I have in store for me. I know what you're thinking, ”None of us know!' However, when you have a terminal disease, it changes your perspective with regards to time. There is a sense of urgency. Anything that takes from my time with loved ones is scrutinized and scratched unless it is more pressing. Thus far, no such obligation has crossed my path.
 
The holidays give us an opportunity to have the whole family together again. Laura and I are nearing the empty nest stage. Although Jordan is 16 and living at home, her schedule keeps her running all the time. The idea of getting the Jhaveri Five back together is awesome. Now understand, there is the ideal of our time together in my mind, and then there is the reality of having four, count them four, highly animated women under one roof. Needless to say, the dynamic is unpredictable. 

We all become stressed because we want a perfect holiday. (Whatever that means?) My daughters are the most zealous on reaching this goal. If there is a perception that we are deviating from this, they will stop at nothing to correct the situation. This is where being 'highly animated' becomes a problem.
 
(I promised to talk to the folks who are not looking forward to the holidays, here we go...)

​The intention is to get everyone rowing in the same direction, thereby creating harmony. Unfortunately, the execution sometimes misses the mark. During the correction, feelings get hurt, people are offended and things get ugly. I know I am probably describing familiar situations for you too.
 
You might be subject to some form of family drama and possibly it is your expectations that are not met. Perhaps you feel like you're disappointing others and you are tired of being viewed as a failure.  Regardless, the end results are the same whether you're excited about the holidays or dreading them, there's a level of disappointment.
 
Have I depressed you enough? Well, you should know me well enough to know I wouldn't leave you sad! What is the solution? Is there a solution to being disappointed and/or frustrated by the holidays? I am proposing some strategies vs. a single solution. 

First of all, ask a simple question when everyone gets there: "Describe what you want to remember when the holidays are over" or “Is there something that would make your holiday complete?"

The point is . . . communication is the key to harmony. You should be prepared for silence or "I don't know.” Respond with, “You can think about it and tell me later. I just want you to have an awesome time!”

​By the way, this dialogue doesn't have to be initiated by an adult. As a matter of fact, if you’re not the adult, you will be demonstrating excellent leadership skills.
 
Next change the focus from wanting the perfect holiday which involves changing the behavior of others. Instead, focus on creating the perfect holiday which means changing your behavior. There are specific behavioral traits for which you should watch: 

• Do not get offended, make the decision that you will get over yourself! 
• Give others the benefit of the doubt.  
• If something happens and you suspect it’s malicious or innocent, choose innocent. Remember these behavioral changes are yours to do.  Unfortunately, sometimes people are malicious for unknown reasons. 

To combat against purposeful attacks, I’m going teach you a skill that will make your antagonist's weapons backfire. This will sound counter-intuitive but stick with me.

​When someone says something rude about you, add on to the comment. Make it more ridiculous and laugh. The cherry on this metaphorical cake is to compliment the antagonist. You have to really sell this performance for it to be effective.  Let me give you an example:

A: “I can't believe you ate all that, you’re going to be sorry!” 
Me: “Before you know it, the buttons on my shirt are going to pop off like bullets, ha, ha, ha!”
A: “Seriously, you’re going to become fat!”
Me: “Stop, you are too funny, ha, ha, ha!” 

You are refusing to give your adversary the desired response. Actually, you are happier the more insults that are hurled at you! This is how a smart, dorky, little Indian boy made it through High School!
 
Finally, let me tell you the most important thing you should contemplate. Do not give away the power of controlling your emotions to others. Decide to be happy regardless of what other people say or do. 

I want to share some wisdom that I heard years ago and it became part of my DNA. "Getting angry with hopes of hurting your 'enemy' makes as much sense as drinking poison hoping your enemy dies!” 

Recently I have been inundated with the phrase, ‘Wait on the Lord’. This concept is my Achilles heel. I have spoken to many people and it's obvious that I am not alone. As a country, we are not willing to wait for... anything. Therefore, it is not surprising that waiting on the Lord with getting what I want or need is difficult, to say the least.
 
We have directions from scripture that tell us to wait.

Wait for the Lord; be strong and take heart and wait for the Lord.” (Psalm 27:14 NIV)

​“Wait on the LORD, and keep his way, and he shall exalt thee to inherit the land.” (Psalm 37:34 KJV) I felt that God was using these scriptures to increase my patience.
 
We also have the widow in Luke 18, who kept on and on at the unrighteous judge asking to be avenged until he eventually relented. Jesus was teaching us not to give up in prayer, even though the answer may appear to be delayed, basically ‘wait’. We need faith when persevering in prayer. Many people spend a lifetime praying for one thing or another. The keys seem to be persistence, faith and patience (wait). 

I kept at it, to understand waiting. I dove through Bible studies and found that most focus on our unwillingness to wait; being in too much of a hurry; drawing similarities between ‘waiting on the Lord’ to the time we might spend in a doctor’s waiting room or at the bus station. The central theme repeated: Slow down, give the Lord time. Wait for the Lord’s reply. Let go and let God. Leave it to the Lord. Be still. Do nothing but wait; He will answer. The conclusion: pray, have faith and get on with your life. 
 
In my gut, this conclusion has to be off, it just has to. I would not drop this topic and I studied the Hebrew words. When translating ‘wait’ is ‘qavah’ which Strong’s dictionary says means literally ‘to bind together', figuratively it means look patiently and wait.
 
When translating ‘on’ is ‘el’, ‘el’ which means 'properly denoting motion towards,’ then came my“Eureka” moment. (Why else would I write this post?) ’Qavah el Yhvh’, ‘Wait on the Lord”. Waiting ‘on’ the Lord is not the same as waiting ‘for’ the Lord. There are two different meanings of the word ‘wait’ according to whether it is qualified by the ‘on’ or the word ‘for’.  In a line at Disney or when we wait for a taxi, we are waiting ‘for’ someone or something, not waiting ‘on’ them.

​Here is the cool part, when the Lord tells us to ‘wait on Him,’ He is telling us to behave as waiter would, to serve Him! Do you want water? Would you like me bring more bread? Or how is your meal? Basically the question in a waiters mind is how may I serve YOU?
 
I am not sure I like my conclusion more, but it aligns well with the reason God made me (and you). We were made to worship, the rest of the reasons pale in comparison.
 
Joshua 1:7 is embedded into the structure of our home: