“He felt helpless and so did I.”

Here is a quick thought exercise. Please take a moment and recall something that you love. It literally does not matter what it might be. A movie, or song or person or car or Italian food or sex or shoes or kittens. Now think of how you respond to that something. It actually puts a smile on your face. But what makes it so special? To you alone? It is special because of how it makes . . . you . . . feel. It provides you with the gift of joy.

Now imagine the thing that you love . . . with the emotional element completely absent. In other words . . . without the joy. Without the smile.

Now imagine living your entire life without ever experiencing the state of mind that most humans are capable of every day of their lives. Imagine your life without joy in it.

For the last 20 years, my son has suffered from social anxieties which have affected both his and my life profoundly. His symptoms have remained the same throughout, regardless of the therapy or medication. Not a single professional therapist- and there have been dozens- has ever suggested to me that my son might be suffering from a disability he was born with. Not a single one.

The result has been 20 years of agony for my son, and peripherally, for me. I was never able to respond when my family and friends would ask about him. Where has he been for 15 years? I had no answers, and I lived with him every day.

Now, I believe I have some answers. Now, I believe I understand why my son hurts. This revelation will not cure my son, but understanding what is going on with him has been life changing for me. I admit that I am compelled to write this down. These are the words I have been searching 20 years for. My only hope is that they may help my son in some small way to enjoy his amazing life.

With this in mind, I would like to introduce my son. Please forgive me for a bit of blatant parental adulation, but it’s an important part of the story. He is 32 and a special person. He has been my guiding light since his first breath.

Shy and always curious, he is a person of charm, intelligence, compassion, honesty and excellent humor. He has always been handsome, well groomed and athletic. He is articulate and has read more books, on more subjects, than any human I know.  He loves music and food. He has a BS in Economics and recently finished a Coding Camp for Computer Programmers. In short, my son would be considered a pretty good catch as a mate, a son-in-law or an employee. His only goals in life have been to have a girlfriend, a good job and to travel.

But since the age of 12, he has never had a single friend, of any age, male or female. He has lived with me the entire time and I have seen him interact with someone his own age only once in 20 years. I still recall those four days as some kind of an illusion.  It has been a profoundly sad existence for both of us.

My Eureka moment came recently during our weekly phone chat. He shared this story with me.

He is an international soccer fan and is devoted to a particular team. By a ridiculous coincidence, there is a bar in town that caters exclusively to fans of his team. The environment could not be more conducive to making friends. He was watching a big game in the packed bar and his team was not expected to win. Then, without warning, his team scored and won the match. He said the entire bar went insane.

But all he could do was stand back, beer in hand, as he watched every single person in the bar joyfully express themselves. He said he was so happy that he could have cried, but did not. He laughed after the story and mentioned how it was so hard for him to have fun.

A few days later, I realized that he had described to me what every day of his life has been like since he could walk. Eureka.

I now believe that my son suffers from a disability that he was born with. A recognized condition known as alexithymia. That pretty much nails it for him. There is no official diagnosis, but I believe in my heart that this is the answer.

It is basically the inability to regulate your emotions when faced with typical social interactions. It effects a person’s imagination and creativity as well. All the things we associate with a person’s personality. I believe he has an extreme case in which he cannot really feel his emotions as we do. He understands intellectually, but somehow cannot translate that into the intangible, essential thing we experience as happiness. For a sensitive person, this is existential stuff.

At a very early age he told me that he knew how people were reacting to him, but he could do nothing to ‘fix’ himself. He felt helpless and so did I. For 15 years he has lived by his own abiding truth. The longer someone is around him, the more uncomfortable they become. That idea has driven his entire adult life experience so far.  

If you don’t want to make people uncomfortable, especially the people you want to meet the most, your only option is to avoid everything. All social contact. No fun events, no concerts, no bars, no hanging out with friends. It is simply too painful to endure.

My son is a fully formed, functional and quite amazing human being who no one has ever met. He is a bystander in a world where he has all the tools to thrive, and he cannot even participate. And he wants to participate so badly. Social interaction is part of being human. He works very hard, but has never had a job equal to his intelligence level. No white collar employers will hire him because of his awkwardness. And it’s too difficult for him to imagine relationships with fellow office employees.

The tragedy for him has been all consuming. A very self conscious person, he must confront two things every day of his life. The reaction of people to his presence, and residing in a world where everyone around him can express themselves, and he cannot. This is a very sad place to be.

The tragedy for me has also been acute. It is no exaggeration to say that I have grieved daily for my son over the last 20 years. I was blessed with an extraordinary life before he came along. I travelled the world and enjoyed all of the best it has to offer.

By nature, I am all the things that he has not been allowed to be. Creativity, imagination and emotions are my life blood. I wear my heart on my sleeve, and it’s been brutal. After years of trying to share my hopes and dreams and passions, I finally had to accept reality. This is not anyone’s fault. There is no fault here. It’s simply another life being lived among the billions every day.

I was born to be a father. I would have been such a great dad. But I never got the chance because he was unable to play his part. Of course we had lots of fun and good times growing up, but when he turned 12, that all ended, never to return.

My contribution since then has been as more of a caregiver. Luckily for him, that is something I am very good at. He may never understand the pride I have for him but he knows that he is the reason I get up every day. He knows that very well.

My instinct is to make the world better for my loved ones, no matter the challenge. When my son is the subject, I have few boundaries. But regardless of my best efforts, I have never seen the most important person in my life happy. Truly, eyes sparkling, goofy-grin happy. And it haunts me.

Last year he moved to his mother’s hometown to take some classes. It has been a positive on many levels. All the relatives are getting reacquainted with him, so that part is very nice. He has been under my roof his entire life. If he was not working or doing sports, he was watching something or reading inside. When I was home, he was there. Always.

This month marks the one year anniversary of him moving out. I have had the house and the dog to myself for a year. Not surprisingly, it has been both a blessing and an emotional roller coaster.