It ain't easy being me.

Welcome to Substance by Stan.

It’s quite liberating starting a blog that almost no one will read. It affords me the opportunity to be honest and open with my audience. 

I don’t have to hide. 

One of my favourite quotes comes from The Mask: “We all wear masks… metaphorically speaking”. 

I have worn a mask my entire life. 

My hope is that by starting this blog, I can lower that mask and let you get to know the “real me”. 

I will try to reveal parts of myself that not even my closest family and friends know. So that you understand the lens through which I will offer my opinion on a wide variety of topics. 

Let’s get started. 

It isn’t easy being me. These are words I find myself uttering often - usually at 3am when I lie awake, desperate to fall asleep. Desperate for the pain to subside. 

Allow me to explain. 

I was misdiagnosed most of my childhood and young adult life. I suffered from asthma, arthritis, extreme skin reactions to multiple allergens, blinding headaches and migraines, stomach issues, to name but a few. 

As I became a young adult, some of these faded away, but were replaced by new invisible attackers who joined the fight to destroy my body and mind. I developed what was, at that time, known only as the “100 day cough”. My arthritis became worse, the headaches grew louder. 

Until one day I was referred to a new doctor - who for the purposes of this and future posts, I will refer to as Dr House. (IYKYK). 

House was able to, through a multitude of tests I had never seen before, diagnose me with an auto immune disorder. Now I am not a doctor and I will probably mess up the explanation…

But the way I understand it is that I have a form of Leukopenia. Or as I believe what I have is known - Secondary Autoimmune Neutropenia (AIN) 

In a nutshell, my body, for some ungodly reason, prevents my white blood cells from surviving. I have at times dangerously low levels of white blood cells in my body. 

This means my body very often cannot fight infections properly. You sneeze in front of me, I get flu. You eat a seemingly suspect piece of food around me, I get a bug. And so on. 

Often, my small remaining contingent of white blood cells get the wrong message and land up attacking my body instead of trying to heal it.  

Over the years I have suffered from many issues because of this, but the three that remain consistent are stage 3 sarcoidosis, rheumatoid arthritis and a variety of gut issues (in some shape or form). 

This sadly leaves me most days in some level of pain or discomfort. It’s become my norm and for the most part I live with it. 

I do try and hide this pain from the world though. Suffer in silence if you will. I cover it up as insomnia, anti-social behaviour and “stomach issues”. 

I get out of social events by blaming work, blaming “food poison” or a gym injury. Anything that will allow me to be at home, alone dealing with my pain. 

As Spider-Man said, “My life is not for the feint of heart”. 

Why am I telling you all of this?

For many years you have followed my brother’s blogs and writings (and if you haven’t - you should. Link!). For many years people have asked why I don’t write anymore. 

The truth is I haven’t had anything meaningful to say. 

But that changed on October 7th 2023 when I was shocked to my core by events taking place in the world. 

I always joke that I am “Jew-ish” but these events have affected me in a way that took me by surprise. 

I am no stranger to war and fighting. 

There has been an ongoing war and struggle inside me my whole life. My body literally tries to destroy itself on a daily basis. Or at the very least, does nothing to defend itself. Outside forces also join this war in the form of bacteria, infections and virus. 

My family call me Bubble Boy. 

Yet somehow I have survived. Thrived even. How have I survived this war? 

Homeostasis. 

Homeostasis is defined as a self-regulating process by which a living organism can maintain internal stability while adjusting to changing external conditions. Homeostasis is not static and unvarying; it is a dynamic process that can change internal conditions as required to survive external challenges.

In other words - peace. If I destroy the remaining white blood cells that are attacking me… I die. If I try and ignore them, they attack either way. 

I have to find a way for my body to live with the enemy within. To fight it not with violence, but with care and love. By taking high doses of healthy and good nutrients, minerals, vitamins, etc. my body starts to fight. Fight for peace. 

I have to adapt. Change. Pivot. To think differently in order to bring stability and control to chaos. 

Maybe that’s why I love problem solving so much? (A topic for another day)

So while I have very many opinions on what is happening around the world today. Most of them biased. I will not be sharing those views on this blog. 

Instead I want to try and share a message of peace. Of light. Of understanding. Of tolerance. Of finding balance and happiness in the world. 

Of finding homeostasis. 

Through my ramblings, I hope to speak to that inner strength and inner goodness that is inside us all. 

To maybe help you find that which has helped me “survive” my internal war. 

Will this work… or will it comes across as insincere or a desperate desire to be self-indulgent and attempt to be relevant. To be seen?

Only time will tell I guess. 

Before I sign off, you are probably wondering why I called this blog “Substance”?

Discounting the obvious fact that my name is in the word - subSTANce, the reason for the name is that I have spent my life searching for it. 

With the victim mentality I often took on, I searched for the meaning behind my “suffering”. Surely there must be a reason that I of all people should have to suffer like this? Why me? Was I a bad person in a previous life? Am I paying the price for some past sin?

(Yes I realise how this sounds. I agree with you. Get over yourself Stan. You have it lucky compared to others.)

I don’t know the answer to these questions, and I probably never will. 

I chose for most of my life to keep the pain a secret. To squash it down deep. This has cost me dearly - in the form of relationships, friendships, memories. All because I chose to hide and not ask for help. 

This was the mask. I never wanted anyone to feel sorry for me. To pity me. To know how I “really feel”. 

Throughout my life, I have explored books, movies, series, art, history and the knowledge of others to try understand my existence. To help form my identity. 

To find the substance in life that brings me strength. Brings me happiness. Brings me sadness. 

As Aesop said:
“Beware that you do not lose the substance by grasping at the shadow.” 

It would be easy for me to give into the shadows, the pain, the darkness. And I have given into this in the past. But instead I have found my life’s passion, my Ikigai, my substance - in trying to be a light to the darkness. To be a strength and guiding light to those in my life. 

So my hope is that this blog, my ramblings, can be an outlet for that light. 

To help you fight the war that may be raging inside you or in your life. 

To help you find substance in your life.

SK