A true Warrior, never to be forgotten

This past week a very special friend of mine lost her epic battle to a terminal disease. You see… my friend Heather and I had recently established a very special connection over the past couple of years in that we had a common bond in fighting our fiercest to live our lives to the fullest and never ever give up. Heather lost her battle to cancer last week. Leaving behind a wonderful family, husband and two precious girls.

30709330_10156426908668573_8887517959518420992_oI wanted to share with you the post I left on her page because it really expresses my thoughts and feelings about what it means to connect with other people while you struggle within your own battles. Whatever they are.

Today we mourn the Queen of soul. To her family, friends and so many people… Heather was a Queen of hope.

Rich Lieberman’s post in memory of  Heather Sabella.
August 12 at 1:51 PM · Facebook

Heather was a light that shined so brightly, and will always be an inspiration to me as I continue to fight my battle to stay alive against ALS. The last time we spoke and I had the chance to give her a huge hug, we looked into each others eyes and promised to each other we were going to keep fighting until there was no fight left in us.

Early on while I was fighting my own battle privately with my family, it was hard to share my story with friends and acquaintances far and wide. It was Heather’s courage and honesty in sharing her own battle with the rest of us, that helped me to gain the strength to finally come out and share my life-threatening illness. She explained how much relief and strength it could provide and I thanked her so much for such great advice. Our messages to each other when one of us posted something were truly heartwarming and very special.

The day she passed I woke up feeling a sense of relief somehow. I started to write in my blog and share how lucky I was to be surrounded by such amazing family and friends. Before I had a chance to post it, I received a text message that she had passed peacefully that day. I want to believe that my peaceful feeling was a sense that she was finally free from the pain of her struggle.

That very night I went to see Band of Horses at the Capitol Theatre. Some years ago, I saw her and Bill together at the Band of Horses show at the Cap. It was before all of our troubles began and when things were right in this world. We all danced and enjoyed the music, for it was music that was our connection from the beginning. Was this just a coincidence? I think not, I know not. I decided to go to the show in her honor, and say a prayer for her and her family, and to remember the times when we were both healthy. I now go to shows in my power wheelchair as a quadriplegic.

Heather was not a quitter, I looked to her for strength and I still do. A wonderful person, friend, mother and wife. My heart goes out to Bill Ogg and the kids. She will always be with you. The universe has lost one of the really good ones.

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Sometimes it’s just the little things…

… and sometimes if you have ALS and you’re driving along, around town minding your own business in your power wheelchair… it could be the bigger things that can put a smile on your face! It’s really just as easy as looking up to the sky every now and then. 😜

I had such a great day having cocktail hour on a gorgeous Friday Night in Stamford last night with Lauren. We sat outside, had some adult beverages while listening to an acoustic guitar player. It was so great to be out.. I think we might just make this our weekly Friday night ritual going forward. Also, was happy to run into an old boss from Apple as well.

You certainly can’t blame me for wanting to get my mind off ALS. (thanks, Lauren & Marilyn!)

Live Like Lou!

It was on July 4, 1939, Lou Gehrig Appreciation Day, when the longtime Yankee first baseman uttered the famous words at a home plate ceremony at Yankee Stadium: “Fans, for the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth.”

And, in his final sentence, he returned to his opening, saying: “So, I close in saying that I might have been given a bad break, but I have an awful lot to live for”‘

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I’ll keep trying to ‘Live Like Lou’ everyday. I truly share the sentiment of those words and will try to channel his strength till the end. Very hard thing to do from a man so larger than life.

Happy birthday America!

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Lauren McCabe and I

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Father and son.

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This is an ALS Warrior…

I read this tweet from somebody I look up to so very much this morning. His story was one of the first I ever watched after receiving my diagnosis. I’ve added his documentary video below this new one, it’s much longer, but so powerful. He continues to amaze and inspire me. Here is a 5 minute speech from my fellow ALS Warrior! There are quite a few of us and we will continue to spread awareness and show the world what we can do.

His name is Anthony Carbajal a friend… a hero!

His Documentary: “The Strongest I’ll Ever Be”

Precious moments…

It’s been quite the busy past month or so around here. And it’s really good stuff too! I’ve been getting out much more with the nicer weather. Seeing more friends and family. Lindsey just turning 18 and graduating, means some really precious moments back to back for Lauren and I. She’s growing up so fast in front of our eyes! While I know in the back of my mind that I have something going that makes my life very difficult for our family to manage. I’ma keep on pluggin’ along and put a checkmark next every amazing and precious moment as they come. And many more there will be! I mean just look at this nice list from the last few weeks alone.

Lindsey’s 18th birthday ✅

Lindsey’s prom ✅

Lindsey’s high school graduation ✅

Lindsey’s selecting her college ✅

Meeting Lindsey’s first boyfriend ✅

Ryan finishing his second year @ College ✅

Ryan’s awesome summer internship in NYC ✅

Eric Clapton plays a concert in my town ✅

The Signing of the “Right To Try” Bill! ✅

I could actually go on…. 

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Lindsey pre-prom w/ Dad!

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Lindsey’s necklace (an 18th BD gift from me) custom made by my dear friend,     Georgianna Koulianos / GK Designs Jewelry

Lindsey’s hair done by my amazing friend and the best stylist anywhere, Melanie Hess  

 

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Ryan’s prom night, two years ago.

A wonderful recognition from The ALS Association, CT Chapter!

Screen Shot 2018-05-12 at 4.06.14 PMOn Thursday, May 10 the ALS Association, CT Chapter held a great event in Westport, CT that was to be a Thank You to many in my community that have been affected by ALS and to those who are fighting in so many ways to help find that elusive cure

I was honored to be presented with the David Grimshaw Beacon of Light Award. As I continue to try to empower others to live life to it’s fullest, there’s more work to be done as an advocate and to spread awareness. We will find a cure!

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My remarks at the event…

About David Grimshaw

David Grant Grimshaw
1/24/56 to 4/30/01
On April 30th, our chapter lost a special man, Mr. David Grant Grimshaw. David served as President of the Black Rock Community Council for 4 years; he helped to establish the Burroughs Community Center in Bridgeport; he was co creator of Bridgeport’s Lobsterfest; and he was instrumental in the restoration of the Fayerweather Lighthouse at Black Rock Harbor. David was also an internationally known artist. David was diagnosed with ALS, or Lou Gehrig’s disease, on his 40th birthday. David then became chairman of The ALS Association Connecticut Chapter. Below are some examples of David’s work, as well as photos of David with close friends and family. David will be sorely missed by many.

My Personal Story… ALS Awareness Month

As I pondered how best to do my part in spreading awareness to ALS this month, I wavered between writing something poignant or making a video and free styling. It occurred to me that telling my own personal story might make a bit more of an impact.

I have not shared what you will see me talk about in this video with many people. I talk from my heart, unfiltered, unrehearsed and parts are raw and may be hard to hear. Please excuse any use of mature language.

What you see here is me. A person living with ALS.

I hope this brings more awareness. 

Someday, every month of the year will be ALS Awareness Month!

 

 

This song kind of says it all for me…

Sunsets over the beaches from now on
Each day looking for new ways to go on

Slow burn watching the world turn from my arms
New way of measuring each day till it’s gone

Sunrise building a reprise in my heart
Regret tight around my chest plays its part
‘Till it’s gone

But to shower you with pity would do you no good at all
No good at all

Now watching the sunset, sunset, sunset, sunset
Over the beaches, beaches, beaches, beaches

A Vlogumentary… it’s a thing

My first attempt to put together a piece that is somewhere between a Vlog and a documentary. Keep in mind, I have zero film or editing experience, but I do have tons of stories to tell. This time a local Art Gallery’s showing of the art works of Jerry Garcia peeked my interest as I set out to find out more of the history behind “My Jerry.”

The following was made for fun and to speak about the stories of my youth. While there is no ALS content in this post, I hope those effected will see and feel my joy and my desire to keep learning something new everyday. There’s still a lot of awesomeness to be had.

-Rich

My wish grant story published…

If you happened to see my vlog around my birthday a few weeks ago regarding the wonderful wish grant I received from Michael & Sara Franti’s incredible organization, “Do It For The Love.” Then you know I spent my 55th birthday with my family seeing  Billy Joel at MSG. Incredible tickets, hotel, parking everything included!  AMAZING!

Well here is the recap just posted on the Do It For The Love Website.

The synopsis of my story including details of my battle with ALS were written by Lauren and I’m really psyched they included my Vlog with it on their official website!

Check it out on their official site by clicking here or on the picture of the article. 

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