Making Up For Lost Time (Why I run for Ella)

So this is the part where I try to pack a lifetime of lessons and emotions into a blog post I suppose. Please excuse me while I give myself a quick pep-talk…

“Joe, you can do this, just speak from the heart and don’t ramble.”

“But I always ramble.”

“I know but just shut up and pull it together.”

“Ok thanks Joe.”

… Ok, well, let me start by saying that the last 2 years of my life have been by far the best of any. I am able to play music with my band, spend time laughing uncontrollably with my best friends, be present with my family and see my sister and nieces often (they moved into the house up the block) and so many other things that feed my spirit. I have never experienced the amount of joy, clarity and eagerness to live that I do today. I believe that if you traced all of my enthusiasm for life down to the root, you would find contribution.

I spent many years of my life fixated on self. Out of necessity, really. From the time I was a teenager to the age of 27, I was a daily drug user. Earlier on, it was less ugly than it would eventually become, but nonetheless, during all of those years I required “something” to help me enjoy myself, or simply get by. Contributing to anything or anyone was not a priority for me. In my mind, I had my own stuff to deal with, and I needed to utilize my mental resources towards myself, nobody else. This truly became my full blown way of thinking and living when I was addicted to heroin. When you are a heroin addict, everything else is secondary. It’s an obsession of the mind. Any addiction is. You cannot function without it and you cannot think of anything else. At least I couldn’t. I describe it as being comparable to the feeling of overwhelming grief. That’s how an addict/alcoholic feels without their fix. That pit in your stomach, that feeling of dread, deep sorrow mixed with the anxiety of knowing that you’re stuck feeling like this until you can somehow get MORE. I simply could not be of service to anyone, not even myself.

Age 27 was the worst year of my life. I don’t cry too often, but I vividly remember on my 27th birthday, sitting on the porch with my Mom and sobbing like a baby. She wasn’t aware of my addiction at the time, so I’m sure it was confusing to her why my birthday blues were so overwhelming, but I explained to her that I was just completely miserable with where I was in life, how I felt like a loser for not being more established in adult life, and just felt stuck. Of course I omitted the details of my addiction, my big dark secret.  We had a long talk and she helped me to feel a little better, but that whole year continued to grow more miserable and more desperate. I was utterly hopeless and I began to think this was it for me. I tried to get off of heroin on my own many times, but it never worked. I needed professional help and spiritual help, which I eventually got in April of 2014.

Since getting sober and working a 12 step program, my life has completely changed. I now live the life that I once dreamed of. Literally. I remember 3 years ago when I was in an awful place just laying in my bed and daydreaming about my ideal life, which at the time seemed impossible to create. I remember watching TV and seeing people dealing with “normal people” problems and situations and thinking, I would give anything to have that instead of this 800-pound gorilla on my back that was going to kill me. It was just a fantasy to be free of my hopeless addiction, be happy and healthy, have stronger relationships with my family and loved ones, play in a band again, and all of those things. But I used to dream about it. Now, 3 years later I am living that dream in the most profound way. NOW, I am able to live a life of contribution.

i’ve been given a second chance to live the life i once dreamed of. how could i not capitalize on that? that’s why i run for ella. because i can

My youngest niece, Ella who is 4 years old. Has a rare disease called Prader-Willi Syndrome (PWS). PWS presents behavioral and developmental issues and delays, but the most heartbreaking symptom of PWS is a chronic, insatiable sense of hunger. Kids with PWS never feel full. It is described as the feeling of someone who hasn’t eaten in 3 days, and they are experiencing it ALL THE TIME. You would think that in 2016 there would be some treatment to alleviate this, but sadly there is no treatment yet. There is no cure for PWS.

I’ve always felt a special connection with Ella. Maybe because of her love for music. Maybe because we’re both May babies. Or maybe just because she’s my baby niece and I look at her and see the sweetest, most caring, loving and pure human being in my life. I decided that I wanted to do my part and try to make a difference for Ella, so I committed to running the 2016 New York City Marathon in her name with Team FPWR (Foundation for Prader-Willi Research), an organization that has made incredible strides towards finding effective treatments for PWS. The funds I raise will be used for critical research that will help Ella and her friends tremendously, and hopefully someday find a cure.

I created a video to raise awareness about PWS and promote my fundraising efforts. I knew it had to be 50% ridiculous humor and 50% heartwarming – because it wouldn’t be an authentic Uncle Joe video without both of those elements. Feel free to watch it, donate if you can, and if not simply enjoy it. Ella is someone who is impossible not to love, and it’s our duty as her family to do everything we can to help her LIVE LIFE FULL.

It fills my heart so much to be able to do things like this today, and to be of service to others. Being of service to others is essentially the root of any 12-step program. That is how we stay sober. That is how we keep our spirit fed. That is how we stay free of that obsession of the mind which used to own us – by helping others. When I first came to Synergy back in October 2015 I immediately fell in love with it, because it is based on the same principal – living a life of contribution makes us all better. Whether it’s running a marathon, helping another addict, or simply making those around me laugh, contributing to the world allows ME to Live Life Full.

My work at Synergy has inspired me to do more than ever before in all areas of my life – my personal relationships, my career, my community – just to name a few. But for me, the best part is being surrounded with like-minded people who also want to live their lives in contribution.  I know I can always rely on the community here at Synergy to remind me that so much more can be created when we work in partnership to make a difference.

I am beyond grateful for the people, blessings and opportunities in my life today, and I would never take them for granted. I’ve been given a second chance to live the life I once dreamed of, how could I not capitalize on that? That’s why I contribute. That’s why I run for Ella. Because I can. I can make a difference in her life and the lives of others just by living in contribution. So, I will 🙂 I hope you do, too.

Click here for the PWS awareness video

If you want to support my fund raiser please click the donation Link