Myself, Lauren and my brother Paul visited the wondrous, beautiful and spectacularly cold (almost zero degrees) beaches of Falmouth, Mass. A long planned trip to Boston and The Cape to meet my new friends and to expand my ALS Warrior family and add some of the worlds best and brightest to my ever-growing medical care team.
In the coming days I will share all of my experiences of compassion, grace & hope. Until then here’s a short Vlog post filmed at the very end of our adventure. You will hear the blistering wind beside my happy voice and the music and video of James Taylor & Carly Simon from the 70’s on Martha’s Vineyard.
When I learned I had ALS, my whole world changed, because on that day, I officially became an ALS patient. Lauren’s world changed as well because, just as suddenly, she became my caregiver. I appreciate her taking on this challenging responsibility more than she’ll ever know.
For some ALS patients and their caregivers, the roles begin almost immediately. Ours was a slow creep. Over one year my ALS symptoms caused me to give up cooking, doing laundry, driving, and running errands by myself. Lauren stepped up and willingly took on the duties — even having to deal with a big learning curve, she has been here for me every step of the way. Believe me when I tell you, it’s no easy task. Emotionally and physically!
Currently, the ALS Association estimates that as many as 30,000 Americans are living with ALS. But when we factor in how many people are affected by ALS, the number is much greater. Spouses become caregivers, family members do, too, and the circle of care widens to include extended family, friends, and professional staff.
But what if you are an ALS patient? My options for gift-giving are pretty limited. Simply hopping in the car to secretly buy a card and a special gift for Lauren is no longer possible. Still wanting to do something, I asked myself, “What would make her role as a caregiver a little easier?”
The answer came in the form of giving a gift from my heart: being aware of my behaviors and of how small changes on my part can help her days to be less stressful.
Following is a list I recently found and read. I will try my very best to adhere to these… gifts that will give back to both of us:
I love you, Lauren McCabe!❤️ 🌻
Living with ALS means there will be stressful events, changes in symptoms, and unexpected challenges. Emotions can ignite, and it’s easy to lash out and blame whoever is in close proximity. This happens way more than it needs to.
I will keep an optimistic attitude, be open to new ideas, and be willing to adapt to changes. When offered, I will accept help and suggestions, knowing they are intended for my safety and not to curtail my sense of independence.
When I’m lost in thought and not paying attention to what I’m doing, I’m at a greater risk of spilling, dropping, choking, or — worse yet — falling. These make Lauren’s job of caregiver much harder.
I will continue to work at being mindful and bringing awareness to my everyday activities. If memories or worries cloud my thoughts, I’ll take a slow deep breath, bring my mind into the present moment, and pay attention to what I’m doing. 🙏🏻
Over time life can become routine, conversations dull, and we can tune each other out. This leads to misunderstandings and feelings of loss of personal value.
I will try to practice active listening: looking at the person speaking, smiling and responding with interest, and adding to the conversation.
Caregiving is a partnership between the giver and the receiver of care. Caregivers deserve our recognition and gratitude. So, I share a special “thank you” to ALS caregivers around the world.
This video is from the inaugural Rock for Rich event benefiting Do It For The Love and ALSA CT.
Oct.11, 2018 – Garcia’s at The Capitol Theatre Port Chester, NY
Michael Franti w/ Victoria Canal & Carl Young
Welcome Speech & Introduction…
Set list: Nobody Cries Alone Stay Human Say Hey I Love You
Thanks to everyone for supporting Rock For Rich. This was one of the best nights of my life. Having so many friends and family with me celebrating life through the healing power of live music! This was a culmination of an idea I had about a year ago, and the inaugural event exceeded my wildest dreams in so many ways.
Rock for Rich was a huge success. It can’t be done without us all working together. Music is healing, and as Michael Franti said ..and sang on the Garcia’s stage “Nobody Cries Alone!”
As we’re now just a few days away from hosting my first fundraising event, everything seems to be coming together perfectly. Who knew these things would be this much work? It certainly has been more than just a learning experience, it’s been truly a labor of love. I’m so humbled and overflowing with gratitude for all the people from the many different facets of my life dating back to when I was young child. You have contacted me directly, purchased tickets for the event, and donated to help my cause to battle ALS. It’s times like this that I realize I have accumulated such dear friends, wonderful life long acquaintances, and family that has always been there for me. Rock for Rich has become the vehicle from which I will continue to grow my efforts in spreading ALS awareness, partnering with the best charitable organizations, and hosting fun musical events to reunite us all and to celebrate life.
With a few days to go, here are a few things to know about the event.
Don’t be late, as I’m proud to share with you that Michael Franti will be attending our event at 6:00! 🎸I’ve been trying to keep this a secret, so act surprised! 😉
Tickets for the pre party only at Garcias (5:30-7:30) will be available at the door for $60 if you haven’t purchased your tickets yet. But we would like to know if you’re coming to get a head-count.
Remember to enter through the Garcia’s door, not the main theatre entrance. Garcia’s entrance is next door to the main theatre.
We will be holding a silent auction as well as a raffle. There are silent auction items as well as the list of incredible raffle items already up on theRock for Rich website. Online auction bids will end by midnight Wed 10/10. Bidding will continue at the party until 7pm, so we have time to announce the winners before 7:30. Also, we havewonderful raffle items, and raffle tickets are $10 each / 3 for $25…so please remember to bring cash!
We will be providing food, kindly donated by Libby Cooke Catering, Corbo’s Deli, and Chicken Joes! Garcia’s has a cash bar.
Rock for Rich is NOT a 501c3 yet, so please be advised that ticket sales and any cash donations (ie, raffle) cannot be claimed as a charitable deduction. However, any credit card donations that go directly to either the ALS Association or Do It For The Love, can be claimed as a charitable donation. Rock for Rich hopes to be a 501c3 by our next event!
This is going to be EPIC! I can’t wait to see you all. If you have any questions, all info is at Rock for Rich.com.
This past Saturday I spoke at the annual ALS Conference at the Hospital for Special Care, New Britain, CT. I’ve been a patient at the ALS and Neuromuscular Clinic for the previous two years, and was honored when asked to speak about my own personal perspective on ALS. It felt right to be in front of so many other families that have been stricken with this awful diagnosis. It was very easy for me to open up and share my experience, strength and hope with all of these warriors, their families and caregivers. While I know each one of us goes through this journey differently, I can only hope those in the audience were able to identify with something in my journey. This is probably my fourth or fifth large speaking engagement, and I feel that I get as much out of doing them as everybody in the crowd seemed to.
This is what ALS looks like… this is my new normal”
“I don’t ask why me?.. any longer. I ask… what can I do for others?”
“How I handle myself through this painful journey will define my new legacy”
Okay, my family and friends – please save the evening of October 11 for the inaugural Rock for Rich event! I cannot be more excited with what we have planned!As you know, live music has always been in my DNA, it helps to heal my soul and to dig deep for hope.
So… here I am, starting to get my message out, and trying to make a difference in this world as an advocate and an activist. I came up with the idea of Rock for Rich to help people with ALS, and others with life-threatening illnesses, by coming together with music as the backdrop to raise funds and help increase the much-needed awareness for the ALS community.
I am not asking for personal donations, I am asking for your help to support organizations that use donations to help ALS patients and their families directly, and to donate to research for a cure. A cure will come, I know it will. It may not be in my lifetime, but I’m here to help the people that come after me and to get something accomplished while I can help.
So… here’s the fun part!
I’m throwing a private pre-show bash on Oct 11 at Garcia’s in the Capitol Theatre, Port Chester New York.More info to come (hopefully this weekend) on all the logistics and where to purchase tickets.In the meantime, please save the date … I would really love to see all of you that can make it to my first Rock for Rich event!
***Update to this message: please don’t purchase any tix yet for the Franti concert. We will be selling tix for both the concert and the Rock for Rich pre party event. They will be available next week. Hold tight I promise they’ll be plenty tickets released through Rock for Rich.
Here’s a music video to help entice you for what’s to come … more info soon, I promise! ~Rich
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.
I 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.
Changing lives through the power of music is a critical piece of their mission and with your help, they can reach their goal of raising $25,000 during the month of August. If you believe in the power of music and would like to make a direct impact on the life of someone faced with health challenges, click the link and make a donation of $5 in honor of our 5th year
… 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!)
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”‘
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.
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.
My presentation @StanfordMedX “street photographer, with a debilitating disease called ALS. Anthony speaks on the importance of vulnerability and how it allows him to be a “more abled” photographer.” https://t.co/l8uts5dre4
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….
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