Chris Rosati, ALS & “The Blessings of My Disease”

When Chris Rosati was first diagnosed with ALS (historically known as Lou Gehrig’s Disease), it came as a pretty incredible shock to he and his wife. What had started out as muscle twitches, and eventually some muscle weakness, now had a diagnosis – ALS, Amyotrophic Lateral Sclerosis, a disease that attacks motor neurons (the cells that control our muscles), a disease that changes what you knew as your life, a disease that is fatal. A diagnosis of ALS can change everything. And for Chris Rosati, it did.  In fact, he has quite a lot to share about just how many blessings this diagnosis has brought into his life.   Happily married to his rather lovely wife of ten years, Anna, the two of them have two high-energy, beautiful daughters, Logan, age 8, and Delaney, age 3. Anna had actually been pregnant with Delaney when Chris was first diagnosed. But when you speak to Chris about ALS, he refers to all the blessings of the disease, how he used to worry all the time and how he simply doesn’t anymore. He cares, deeply, for those he loves; but he doesn’t worry anymore.  His intention is to truly live his life – and to live it well. I had the good fortune of spending a few hours with Chris, Anna, and their daughters on a photo shoot recently, and I felt the power of that intention, to live fully, to worry less, to be grateful. It’s really quite striking, a truly palpable energy. Referring to hearing his daughter’s footsteps patter down the hallway, Chris Rosati is so very clear on what matters – he used to hear common sounds like that, and it’d be background; now her footsteps are the focus, the full focus. There is quite a difference in that, in what we put first. He shares some of his perspective in this CBS news story. To that end, he founded the Inspire Media Network, encouraging other people to live their lives fully, to not wait to be amazing – to love deeply, to pursue their dreams and to help others in the process.  Chris believes that, by sharing our adversities, we help each other, that seeing how someone else has “overcome the same seemingly impossible circumstances that we may face can give hope to the hopeless”.  And he doesn’t just mean an illness – he refers to anything that can “knock people to their knees”, like the loss of a job, or a divorce, or the death of a loved one. One of Chris Rosati’s goals is to help bring more awareness to ALS.  And, coincidentally, May is ALS Awareness Month.  To help support that effort, he is also creating a film, The Blessings of My Disease, which you can help fund – and he states: “ALS is devastating. But there are some blessings. I get to be amazed by the good in people every day. I get to experience an overwhelming and never ending wave of love. I hardly ever worry, and never about something trivial. I now see beauty in so many simple things. I no longer fear failure… or much of anything else. I know something you don’t know – something wonderful. And I know how blessed I am.” I had first heard of Chris Rosati when my 12 year-old daughter wanted to do a project with her friends, BIGG (Big Ideas for the Greater Good), a contest that Chris was hosting to encourage students to get creative about doing good things for others. I heard of him again when our mutual friend, Laura Zimmerman Whayne, shared more details of his story, leading me to read up on his super cool Krispy Kreme Heist, his plan to hijack a Krispy Kreme doughnut delivery truck and deliver the goods – see more about how Krispy Kreme gave him one instead (his first delivery stop was a Duke cancer treatment center). Laura had also mentioned that he would be speaking at our daughters’ school as part of an effort he was making to go school to school, to spread his message of love, hope, and fearlessness. And his name came up a third time when my 12-year old came home from school after just listening to him speak to the entire middle school in assembly.  She walked in the door, eyes shining, and said “Mom, I heard Chris Rosati speak, you remember him?, he’s not afraid at all. I mean, he knows he is going to die, have you heard of ALS?, and he says none of us have to be afraid, how much worry doesn’t matter, he doesn’t anymore, it was all so amazing, listening to him …” and she proceeded to tell me nearly everything he said. I truly hadn’t ever seen her that impacted by someone she’d heard speak before. I was so moved that I coordinated with Laura to reach out to Anna and Chris, and we arranged to do this family portrait session. It was truly a privilege for me to do – and it was really just a fun outing, in general. As we meandered around, we had a chance to talk.  We watched Delaney assert her desire for something, as 3 year-olds naturally do so well, and Chris commented, with a smile, “That’s good.  She’s strong-willed, that’s going to really help her in life.”     Watching Chris and Anna together is quite something, too.  There’s so much undeniable love there, such sweetness when they look at each other. There is loss on the way, there currently seems no way around that, but there is right now right now – there is living fully today – and you see exactly what it means to live up to those words. When Chris says to not wait to be amazing, this is what he means, the way they are right here.   Love deeply, pursue your dreams, help others in the process. Got it.