​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!