Sunday, June 30, 2013

Life & Death, Love & Friendship

As these summer days heat up (we are in the middle of a heat spell, breaking all records in SoCal) my thoughts are on my dear friend.

It is true, we are not born of the same genetic parents, but we are more brother and sister, than I'd ever had with my "natural" family.  We know each other through our shared fraternity, and I wouldn't be half the man I am today, without her unconditional love and acceptance.

5 years ago I was ailing in Texas with advanced Hep C and the beginning of liver cancer.  She  herself  had just been through her first rounds of chemo and had been in recovery, when she insisted I move back to SoCal, and let her take care of me.  I was at the point that my Medicare insurance in Texas was so utterly lousy, and medical care so poor that I had pretty much given up any thought I'd recover from illness, let alone lead the kind of life I have today.

We all know, sometimes good comes to us, and we may not recognize it, because it looks horrible on the outside...if it weren't for my illness, Kaiser would not ever have scanned my brain, found my Agenesis of the Corpus Callosum/had me evaluated for ASD, etc....I'm thinking about the moment after I got out of my neurologist's office here, I called her and told her the news and she asked me "how do you feel about that?"  I was so shocked, surprised, and relieved, but I didn't even know yet, it hit me like a ton of bricks.

Here we are though, years later, and I have been published in Scientific American Mind magazine (about my ACC) and am working on constructing another non-profit to benefit others born like myself...I've turned my lemons into lemon daiquiris! LOL

Today she's nearing her end of her battle with cancer...I have the sad honour of being here to care for her.  I feel like I  owe her my life, it is a very sad but true honour.  In our way we  "offer healing and knowledge, freely, without cost, without condition, without "label." Without the need to wear it on our shirtsleeves blending in  with peers and appearing as one of them.  She is the epitome of this.

Like myself, she has had lifelong social, um, let's call them "differences", and while she is greatly loved by many, like myself is very choosy about who she has around her.  We both do things "differently" have different neurologies, etc...and so we are like two peas in a pod.  She allowed me to be my quirky, inconsistent, different, loving, intelligent self, fully, without reservation or judgement, and I flowered...thank God

In a time when my father has "formally" broken all ties with me (I am actually greatly relieved), and watching the last days of my beloved friend on this planet...I am reflecting so much.

You see, before my diagnoses, before the MRI that revealed why I was so different, I spent my life, parroting behaviors, social, emotional, etc....but never really understanding why I needed to do so.  I had no idea I was doing this, it IS just what both ACC and ASD folk do to not get "pounded on" by society.  What I am experiencing today, is that the real, very human personality and person of this "Scott" "Joseph"  person is coming out as never before, and I'm literally basking in peace of mind and heart that I've never known as I do today.

Much of my, admittedly outrageous behavior throughout my life, was because I expected (and other's expected me) to be, act, behave in a certain way.  But all of that is a lie, you see...Lately all of my extreme anxiety and meltdowns, have no more lasting shame and hold on me....Do they still occur?  yes, but I know I am not that.

I want to take this opportunity to thank all of you, I have been receiving many, many letters and emails and texts from people, and I wanted to share just one (with her name removed, to protect her privacy) :

Not sure if you hear this enough, but wanted to write to tell you that I love you and you are loved by so many on the L-Serve and facebook. Your posts touch so many lives, please never stop your posts, they have meant the world to me in the past and they mean the world to me now. You are loved! I love you and think you are a wonderful man who is on the earth for a reason! You help so many through your sharing precious parts of your life, happy and sad and I hope you never stop sharing....
You are very special to me! I love you so very much! You share so much of yourself, truthfully and without any hesitation from what I see. Because of that sharing I find strength at times to put one foot in front of the other each day. You have touched my life!
This makes is all worthwhile. The woman that wrote this, just lost her daughter who was profoundly affected by Agenesis of the Corpus Callosum. Like my friend, she spends her time and energy helping others, without holding anything back. She only just lost her daughter, and she is still doing so....God bless you "L", and thank you.

I cannot go back and change things for myself or my own family, this is now clearly evident...But I have a chance to take who I am and use it to help change the world.

I love all of you, and I only ask for your prayers and well wishes for my friend and I at this time.



  1. My heart and prayers are with you both as you prepare for Troya's next journey; how wonderful it is that you can send her off with the love everyone should know ...

  2. Thank you so much. You are an important part of my life, and friend beyond measure Sandy <3