A glimpse at the  end of Akhil’s life…

August 31 (continued…)

As Akhil’s body shut down, our oldest daughter, Ashley, left work and went to Portland to pick up our youngest daughter, Jordan, so they could come home to say “good-bye”.  Akhil seemed to be in such a precarious state that I wondered if they would make it home in time.  I called Corinne to let her know what was going on.  We agreed that we would video call when her sisters arrived.  In the meantime, I sat alone in silence beside Akhil.  How I wish he could talk.  I would have loved to have known what he was thinking.  Years ago, when he could talk, we would frequently ask each other, “What are you thinking?” Many times the answer would be a deep, intellectual one like, “I am wondering if each neighborhood would adopt a homeless family, would that end homelessness?” and other times something totally silly like, “I was thinking about a Ted Drewes' chocolate Snicker bar concrete with hot fudge on top and wishing I had one right now.”  At this point, I feel like if Akhil could respond, he could go either way – contemplative or ridiculous.  If you know him and his sense of humor, I am sure you understand.  If I were him, I think I would be making a list in my mind of everything I would want to ask God. 

My thoughts are interrupted when Ashley and Jordan arrived. They let their dad know they were here.  His eyes remained slits, neither opening nor closing.  Ashley grabbed her guitar so we could sing some of Akhil’s favorite worship songs.  Jordan video-called Corinne and put the phone where Akhil could see Corinne.  His eyes opened wide letting us know that he was aware that his girls were all present.  They shared the wonderful memories they would always have of him and each said, good-bye”.  Ashley led us in a few songs.  We got off the phone with Corinne and Jordan asked, “Now what?”.  I told her, “We wait.  But you don’t have to.”  Jordan seemed relieved that she didn’t have to stay to witness her dad’s last breath so she chose to go back to school.    

​Ashley and I watched the movie, “PS I Love You”.  In case you don’t know the story, a man dies of cancer but had the foresight to leave a year’s worth of notes and surprises for his wife to help ease her in to the time of living without him.  It made me think of Akhil just because he was romantic like that.  I hope he heard the movie.  I told him it made me think of him and how romantic he always was which I am sure made him smile inside.  After the movie, I got up to turn Akhil and get him comfortable.  Ashley picked up her guitar and the two of us sang “How He Loves”.  It was the same song we sang right after Akhil shared the news of his ALS diagnosis.  It was only fitting that the first song we sang when ALS entered our lives was also the last one Akhil would hear as the journey ended. 
                                “He is jealous for me, Loves like a hurricane, I am a tree,
                                  Bending beneath the weight of his wind and mercy.
                                  When all of a sudden, I am unaware of these afflictions eclipsed by glory,
                                  And I realize just how beautiful You are,
                                  And how great Your affections are for me.
                                 And oh, how He loves us oh
                                 Oh how He loves us,
                                How He loves us all…”

Ashley and I retired to our beds early, emotionally exhausted.  I got up at five to check on Akhil and was surprised to find him still breathing.  I tried to go back to sleep but couldn’t so I got up at six and gently turned him to his other side and kissed him on the cheek, a tear in my eye.  I threw in a load of laundry.  While I was getting the laundry started, I felt as if Akhil said “good-bye”.  Unfortunately, I didn’t think anything of it at the time. I went for a run to de-stress.  When I got back around 8, I checked on Akhil and found that he was not breathing.  I called hospice to let them know that he had passed away.  I don’t doubt that at that moment, when I felt him say “good-bye”, his soul left this earth. We were that connected.

I gazed out my bedroom window at the street below where a woman was walking.  My eyes filled with tears as I recalled countless Saturdays I spent wistfully looking out that window longing to be outside instead of trapped in my bedroom taking care of Akhil.  Sadly, I would have that freedom today.

​As you may know, Akhil passed away on Saturday, September 1, 2018.  These are some thoughts from my journal leading up to that day.
 
August 16, 2018

Akhil seems to be trying to separate himself from this life.  It has gotten to the point where Akhil rarely gets in his wheelchair; the pressure sores forcing him to prefer the comfort and varying positions of his bed. Over the past couple of weeks, he has not wanted to engage with us.  The girls and I usually fill Akhil in on the happenings in our day trying to insert humor wherever we can so we can laugh together.   We want Akhil to feel part of our lives and part of the world even though he is confined to his bedroom.  We have noticed that sometimes when we start talking Akhil closes his eyes.  It wasn’t until recently that I began realizing that perhaps he was trying to tune us out but he had no way to say, “Stop talking.”  I began asking if he wanted Jordan to tell him about her day or if he wanted to hear about mine and he repeatedly responded “No” by tightly closing his eyes.  Initially, I was hurt but I realized how hard it must be for him to hear about all the exciting things going on in our lives and how painful to acknowledge that, with or without him, life goes on. 

I had a difficult conversation with Akhil today.  I think I initiated it because I was feeling a little frustrated that he wasn’t interested in life anymore and yet I was still giving up mine for his.  I asked him if he was getting any joy out of life anymore and he closed his eyes to indicate, “No”.  I took a deep breath and thought for a moment.  I asked, “Do you want us to share about our days with you?”  Again, he indicated, “No”.  I proceeded to ask, “Do you want me to have people visit you?” and again he responded, “No”.  I asked Akhil if he loves me and he responded with open eyes to indicate “yes”.  I paused to collect my courage because what I was about to say was pretty direct and possibly hurtful but I needed to say it.   “You know that I would do anything for you to keep you here if you want to be here and if you are getting joy out of anything in life.  But”, I continued with the big eraser (Akhil would always tell me when I said “but” it erased everything I had just said), “if you are not getting any joy out of life, I am asking, if you really love me, to let me go.  Let me get on with my life.”  I paused and watched the tears well up in his eyes.  Soon we were both crying.  I hugged him and gently stroked his head.  I have no comprehension of what he could have been feeling at that moment.  I can only speculate that after years of believing for his healing, we were both conceding that the healing we had been promised would be a heavenly, spiritual healing rather than a physical earthly healing.  It was time to stop holding on to this world and begin embracing the idea of moving on to the next.

Throughout Akhil’s illness, he contemplated not receiving nutrition (formula through his feeding tube) and I was always the one to remind him of all the things in life that brought him joy that he would be missing out on.  I would encourage him to think carefully about his decision at those times.  I hated the idea of him choosing to die when there was still life to be lived and enjoyed.  According to what he said today, there was no more joy for him.  I asked him if he was ready to stop eating and drinking (receiving formula and water through his feeding tube) and he opened his eyes to indicate “yes”.  We sat in silence for a few moments each of us contemplating what was about to happen.  He raised his eyebrows a couple of times letting me know he wanted to spell something.  I went through the letter chart so he could indicate what he was spelling.  “F-O-R-M-…”  “Formula?”, I asked incredulously?  He indicated “yes”.  I asked him if he meant he wanted formula and he indicated he did.  I said, “We just talked about this, didn’t we?” wanting to be sure I understood, and he indicated, “yes”.  I went and got  a can of formula from the closet.  I gave it to him wondering if he wanted to feel that satisfaction of a full stomach one last time. 

August 17, 2018

Today is my birthday.  It is just another day.  When I got out of bed, Akhil was awake so I asked him if he wanted formula. “No” he closed his eyes.  I asked him if he wanted me to tell Rose, his caregiver that day, that he did not want formula and he opened his eyes to let me know that, yes, he did.  In a way, I feel like that was his ultimate birthday gift to me.  He is willing to sacrifice his life for mine. 
 
August 31, 2018

It has been fourteen days since Akhil decided to stop receiving formula and water through his feeding tube.  We have asked him periodically to confirm that he still did not want to receive nutrition.  On one occasion, he asked me for more water.  After one syringe, about two ounces, I asked if he wanted more and he responded, “no”.  He is just skin and bones.  I can count his ribs.  The arms that were once muscular and could hold me are as delicate as sparrow’s wings.  The skin hangs on legs that used to carry Akhil on endless adventures. 

The hospice nurse came for her regular visit and said she thinks Akhil is dying.  More so than usual. (Sorry, humor is definitely the coping mechanism in our house.) We removed his AVAP mask to see if he was breathing on his own.  It took about a minute for him to breathe.  Even then, his breaths were almost imperceptible; his chest and stomach did not move.  The only motion was a slight flaring of his nostrils.  The nurse could not find a pulse or get a blood pressure. 

I called all the girls.  Ashley and Jordan are on their way home.  Corinne was able to video call us and tell Akhil she loves him.

Even though I knew this was coming, I feel like I am plummeting into a black hole – a place so dense that nothing escapes it.  My chest tightens and tears well up in my eyes.  I wonder if Akhil feels the same way, like he is slipping into an abyss.  That is an interesting picture - the two of us falling backwards into opposing black holes reaching out to one another unable to stay connected as we slide in opposite directions.  Undoubtedly, we both are feeling a bit of fear as we realize our separation is about to be complete; each of us acknowledging that we are about to enter the unknown.  

  
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.
​
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.   
​
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.
​
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”.
​
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.

​-----------------------------------------------------------------------
 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?