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.
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.
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