Resilience in spite of ALS: Nic Friedman and ALS Never Surrender

Nic Friedman, son-in-law, to ALS Never Surrender’s Steph Courdin, is our guest on Carpe Diem Connections talking about resilience despite an ALS diagnosis.

Resilience is the trait that my friend, Craig Dunham, demonstrated, despite a diagnosis of ALS. It’s the trait that most inspired me to live with what I think of as a “Carpe Diem” mindset.

This week on my Carpe Diem Connections podcast, I talk to Nic Friedman, CEO of ALS Never Surrender, and son-in-law to Steph Courdin.

I got involved with the ALS Never Surrender non-profit a few years ago and was inspired by the founder, Steph Courdin, who gathered a group of colleagues and volunteers to create a mobile app that would collect valuable ALS patient progression data.

ALS patient, Steph Courdin, empowers research teams and inspires me to be resilient and live fully

In this week’s episode of Carpe Diem Connection, we’re talking about Resilience, the 7th Key to Happiness, according to Action for Happiness. Steph’s son-in-law, Nic Friedman, tells us the moving story of the history of ALS Never Surrender. As Steph noted in this video, though his app wasn’t able to save him, it may save the world.

Though Steph lost his battle with ALS in 2019, his work carries on through his family and the volunteer-run non-profit ALS Never Surrender. Tune in to this special episode of Carpe Diem Connections to hear more about the amazing progress that’s being made.

The unedited YouTube video interview with Nic can be found here.

We end with a reminder to live every day as Steph did – with intention, resilience, and a sense of awe and wonder at each sunset.

Join us on the Carpe Diem Connections Facebook Group and share your stories of resilience.

Announcing 2021 Carpe Diem Day Winner

For a #carpediemday celebration, Lee MacIvor leaves her late husband’s huge book collection to a local nursing home.

I’ve been hosting Carpe Diem Day contests throughout the month of February mostly in a selfish attempt to gain followers and recognition for Carpe Diem Day.

I’d venture to say, no one cared about winning the $25 prizes I was suggesting for any of my contests. The few people who were playing, were playing for the fun of it.  I loved seeing the creative photos and captions for both Wear Red Day and Umbrella Day. Picking a clear winner based on quality of entry was too difficult so I went with a “random draw” approach.

With my final contest.. the “big one”… in celebration of Carpe Diem Day.. there ended up being one very clear winner.  Her “entry” into this contest is much more than a creative photo. 

I ended my last blog post with this teaser:

Her story captures the spirit of what I envisioned for Carpe Diem Day celebrations so perfectly..  showing resilience, love, generosity, and the preservation of legacy.

Lee’s story begins over 50 years ago when she met her first love – the love of her life – Brian MacIvor.  They were high school sweethearts at Karachi American School in Pakistan. 

A few years after high school they went on to live separate lives. They reconnected in 1995 after Lee acted upon a dream she had  a few days before by telephoning.  Despite living in different countries, Lee – in a very “Carpe Diem” -like way, seized the day.  She made the bold move from the US to Europe and later in 1998, she and Brian were married.  Who says those romantic movies are unrealistic?

When Brian died tragically in an accident in 2017, the grief for Lee, of course, was unbearable. Grief is an emotion that is indescribable. Though it might remind us that life is precious, ‘seizing the day,’ when we don’t have our partner to seize it with anymore, feels empty. Life can feel meaningless.

But life is NOT meaningless. Brian’s life gave so much meaning to Lee and to countless others. Brian’s art, his poetry, and his amazing, eclectic library of books — these all had meaning. Brian’s passions and joys affected other people. Brian brought love to this world. He made the world a better place. Most notably, he made Lee’s world a better place.

When a loved one dies, we’re entrusted to a legacy that’s more than their possessions. We hold this intimate knowledge of this beautiful soul that changed our lives. When we see their writing, perhaps a signature on an old card..  Or hear their voice, perhaps on an old video.. We want to imprint those memories in our minds and our hearts so they’re never forgotten. We want the world to know this amazing person. We want the world to know this unique, one-of-a-kind genius who we loved..  This person is gone from this world now, but we want the world to be able to experience their magic. 

Lee, holds a gold mine of memories of Brian in her heart. Her Carpe Diem Day celebration is to donate Brian’s amazing collection of over 4000 books to the right home.

Donating a collection of this size, however, is not easy. Donating anything after a great loss is not easy. Lee’s quest for a home for Brian’s treasured collection came with challenges. 

She put a social media post out looking for a home, describing the unusual collection and Brian’s parameters in his selections: 

Brian, a quiet, handsome, and easy to love man from Toronto started collecting books at a young age.  As he grew, so did his passion for books.  He formed his own parameters as to what would be suitable for his personal collection.  The basic genres for his collection were science fiction/fantasy and detective mysteries, although there are many classics in the collection as well.  The books had to be used and in paperback (with a few exceptions allowing for availability and books received as gifts).  Brian would never lend a book from his collection; instead he would generously buy and give a copy of the book to the one who had asked for the loan.

So now I am here to ask for what I need and for what I envision.  I see someone with a big heart and big respect for a book lover’s beloved collection.  I see a person/persons with a plan to receive/retrieve these books and to give/find them a home or many appreciative homes.

Thank you, dear Universe, for connecting me to what I need and want.  It may be through FB, email, phone, or a knock on the door, but somehow your magic will prevail.

Lee received various leads and ideas and helpful communication from book store owners, university library directors, and SciFy/Fantasy book clubs. She had different ideas about donating to youth groups, local prisons, or nursing homes, but all came with complications. Her preference was to keep the collection together, but it was difficult to find a recipient who wanted the entire collection.

When she saw my Carpe Diem Day contest, and that it was on February 26th, 2021, the day after Brian’s February 25th birthday, she was determined to donate the cherished collection in celebration of Carpe Diem Day, despite any complications.

As often happens when we put our intentions out, the Universe provided Lee with an answer on February 23rd. She happily wrote to those of us involved with her story:

Just received a call from Genesis nursing & rehab – they will take Brian’s ENTIRE collection!!!!!!!!!!!!!!!! I am so elatingly, heart-pumpingly high! Brian’s books will have a forever home and we may be able to visit! 

Delivering books to Genesis / Salisbury Rehab & Nursing Center on February 25, 2021 are (LtoR)Jacobs Gilliam, Captain Cristina Trantham, Willie Downing from The Salvation Army; Heather, Angela Clady, and Ted of Genesis. Angela said they were so happy to receive Brian’s books as they will help make their mobile library a reality.

Delivering books to Genesis / Salisbury Rehab & Nursing Center on February 25, 2021 are (LtoR)Jacobs Gilliam, Captain Cristina Trantham, Willie Downing from The Salvation Army; Heather, Angela Clady, and Ted of Genesis. 

This week will continue to be emotional for Lee, as the whole month of February has been, with Anniversaries and special days that she and Brian celebrated together. I am thrilled that she found a home for Brian’s collection and that his legacy will continue to be shared with the world. Despite challenges and pain, choosing to spread joy, love, and happiness.. choosing to persevere..  Now that is what Carpe Diem Day is all about.

National Wear Red Day Contest Results

Yesterday was the first of my February contests. I asked people to post their National Wear Red Day pictures on my Carpe Diem Connections Facebook Group and tag with #carpediemday.

I wasn’t really sure what to expect. This whole month I’m experimenting with trying to get more exposure for Carpe Diem Day and having fun celebrating various wacky holidays. It’s just so much more fun to be playing with other people.

I picked National Wear Red Day to start with because I figured it should be kind of easy for people to find something red to wear and post a picture. I didn’t put any “rules” around how I’d pick a winner. I wanted to see what people would come up with without much guidance about what “qualified” for a prize.

Here are some of the great entries! I just love the creativity!

Fellow National Days Ambassador Meghan looking bold and sassy!
Lee says: "Red reminds me to celebrate, to stop and smell the (red) roses, to create and give red-hearted valentines, and to party with loved ones until the (red) rooster crows!"

I love Lee's mysterious tease as she peeks out of her long red cape.
John says: “For many years, RED (Remember Everyone Deployed) Friday has been a national campaign to encourage Americans to wear red to show support for deployed military men and women. Red also symbolizes the blood spilled by those who have paid the ultimate sacrifice”
Stephanie says: “I am a Sudden Cardiac Arrest Survivor. I now have an ICD that has saved me multiple times. Everyday is a blessing to me, a gift to wake up everyday.”

Eva’s red shoes walked 10891 steps yesterday. She keeps her heart healthy with daily walking.

Crystal says: “We wear red for CHD awareness❣️❣️
Friend and fellow-theme-dresser Heather says: “I had to work in the lab. But you know I still wore red and all my hearts!”
My sister, Michele said: “Happy “Wear Red Day”!! I’m happy and blessed to have a healthy heart, both figuratively and literally! And red is truly one of my favorite colors. Hooray for Red and Hearts and living life fully!”
Ron posted a Red Poppy in honor of the poignant poem, In Flander’s Field
Tony got his Red Superhero on!

Sean and Jack didn’t have any red, but still get mentions due to their supportive posts. Even though Sean was working, he posted a fun red Gif. And I’m very grateful to Becky and Shirley for passing on the word of the contest! Ashley also posted a supportive heart and has a whole event she’s sponsoring for the month of February!

All who participated (including those who shared the link or shared their support, even if they didn’t post a picture) are going to get a Valentine from me in which I pay them a genuine compliment (in honor of today, Pay A Compliment Day.). I’ll put the Valentines in my special Valentine basket and pull one out to reveal the $25 prize winner!

I had fun thinking about some fun prizes like some red sparkly piece of attire – shoes, mask, bowtie, or shirt.. Or I thought about a $25 donation to the American Heart Association.. Or maybe a Red Carpe Diem shirt? But, I decided to let the winner pick their own prize so they can get exactly what they want!

Now, on to the video for the Big Reveal of the Grand Prize Winner!

Who’s the big winner?

Happy Umbrella Cover Day

Umbrella Cover Day
Covered by an umbrella hat under my new umbrella hammock swing

As owner of National Carpe Diem Day, one of my self-assigned responsibilities is to let you all know about interesting and quirky “celebration days” throughout the year.

umbrella hammock
My new umbrella hammock

Right after I bought this fun umbrella hammock swing, I discovered that today, July 6th, Is “Umbrella Cover Day.” I’m choosing to be creative in interpreting this as a day to have umbrella’s cover us rather than celebrating the covers of the umbrella, which apparently was the actual intent.

By the way, today is also International Kissing Day, but for those of us who are single and social distancing, let’s focus on umbrellas. Stay positive, people!

Yes, there is actually an Umbrella Cover Museum in Peaks Island, Maine… the only Umbrella Cover Museum in the whole world! Nancy 3 Hoffman wrote this book and is the director and curator of the museum and I’m guessing, the one who originated the special day! Here’s a picture of her book and as you see, she also enjoys umbrella hats, like me, so it’s not JUST about the umbrella covers.

What I love about these special days, my new bright green palm-tree-like hammock, Nancy’s middle name (3!), the museum, and umbrella hats is that they are all whimsical!

Whimsical is defined as “playfully quaint or fanciful behavior or humor.” Yes, whimsy is definitely something that makes me happy!

The description of Nancy’s book says the museum “celebrates the mundane in everyday life” and finds “wonder in beauty in the simplest of things.” Wow! That is exactly the essence of what I’d like to capture with my Carpe Diem Day philosophy!

I think umbrellas themselves are very fun and can be so colorful and unique. I just heard a story about how the Queen gets color coordinated umbrellas and is using them to keep the social distance guidelines. (I’m very interested in the Queen these days because I’ve been watching, The Crown.)

The Queen’s pretty color coordinated umbrella helps her maintain protection!

And, of course, I’ve always loved cute little beachy, colorful cocktails adorned with little umbrellas!

I’m going to have to check out Nancy 3’s book and see if I can maybe even get an interview with her, but for now, I’m relaxing, happily covered with my whimsical umbrellas.