As another year comes to a close, we find ourselves reflecting on just how full 2025 has been. It was a year of movement, learning, connection, and more than a few moments that reminded us to slow down and appreciate where we are.

 

Travel was a big part of our year. We spent time in Chicago for the United States Association for the Study of Pain conference and in Ann Arbor, Michigan, for the University of Michigan’s Extended Course on Chronic Pain. Both trips were deeply meaningful for my patient engagement work, and Marianne made the most of each city, reconnecting with friends and enjoying time away from home.

 

Let me interject a few other travel details: Besides Chicago & Ann Arbor, Tom spoke at a conference in San Diego while I had a three-day shoot for the commercial Bush’s Baked Beans here in LA.

Two days prior, I slipped into  Kansas City for my friend’s daughter’s amazing wedding.

My sister Jeanne joined me on an intensive NYC, upstate NY, and CT. I booked it as though I was still in my 30s instead of my 70s. Had to get back to join Tom on what was supposed to be a med conference in DC. Turned out the onsite was canceled and done over Zoom.

We did go to Austin for Tom’s work with an Acute Low Back Pain CDG group. I reconnected with an old friend who showed me the sites, including the LBJ Presidential Library, which turned out be one for the 4 such libraries I saw this year!

In May we drove to SF to see my niece Allie, son Oliver and her husband Kel Vin who was there for his on medical conference!

Let’s not forget our med conference in Portland, my side hop to Pendelton to visit the remarkable Mary G. Benson, then back to Portland.

Then I returned to Austin for the premiere of the movie I shot last year, which was great fun, red carpet, lots of interviews and finally seeing the end product, our excellent feature RHYTHM IS A DANCER. 

 

Five days later we embarked on the highlight of the year, our unforgettable journey to Egypt in November. Thirty-two days immersed in history, faith, and wonder was both exhilarating and challenging. Egypt was everything we hoped for and more. By the end of the trip, even Marianne, our resident travel-holic, finally said, “enough.” Still, it was an experience we will carry with us for the rest of our lives.

 

Professionally, the year was incredibly rewarding. I continued working with researchers across the country on patient engagement in clinical trials and guideline development, including interviews with patients at the University of California, San Francisco, to help improve how large language models reflect patient stories. I was honored to receive the Patient Engagement Hero Award at the University of Michigan conference and to be featured in the United States Pain Foundation’s November issue of The Invisible Project https://uspainfoundation.org/pain-research-participants/tom-norris/. I also had the privilege of being first author on published Guidelines for Patient Engagement, work that continues to shape how lived experience is included in research.

 

Through it all, Marianne remains the steady force behind everything I do, and we are deeply grateful for the friends, colleagues, and fellow advocates who continue to walk alongside us.

We hope this season brings you moments of peace, warmth, and connection. Thank you for being part of our lives and our story.

 

With love and gratitude,

 

Tom and Marianne

 

P.S. I need a nap!

We both are so thankful to have another opportunity to share our year with you! Life is so short and unpredictable that just knowing that friends are still here is reassuring! So, Merry Christmas and Happy New Year to you! Know that you are loved and appreciated! Now, here’s a short recounting of our busy year.

 

Marianne: This seems to have been a year of health problems. I’ve been tracking my ovarian cysts for over 50 years when suddenly they grew. So, a little nip tuck in January set us up for another year of travel.

 

Tom headed off on his own to Bethesda, Maryland, to take part in the 4th Annual National Institute of Health HEAL Initiative Investigator Meeting. His invitation arrived after we’d committed to hosting my German cousin Anne Müllerleile & her friend Eske, both in the States, for their gap year.

 

Then he was off again to Austin for the South by Southwest conference where he was a guest speaker in a panel discussing the use of virtual reality as a therapy in chronic pain management (this panel was sponsored for Applied VR.) I had planned to join him, but everything changed when I realized I’d be home less than a day before leaving for my trip to Guatemala.

 

I had a week in Guatemala to meet and learn from our Heifer International spice farmers. Suffice to say, I will never again take cinnamon, allspice, cardamom, or pepper for granted. Such back breaking work in rugged mountains and oppressive heat!  

 

Then Tom and I went together to New York City, where we had an outstanding two weeks of Broadway shows, friends, good eats, and that intoxicating New York vibe!

 

Next, we finally got to take that 2022 canceled trip to Missoula, where we were hosted by our dear friends, who, despite living in Los Angeles, have a very full life in Missoula. They easily integrated us into their activities: a concert, a little shopping, meeting friends, dining out, ordering in, sleeping late, reading, watching great TV. We were surrounded by beautiful mountains, flowers, fresh air. Quite intoxicating and relaxing.

 

In May, we headed to my hometown as I was given an Honorary Doctorate of Fine Arts from my undergrad school, St. Louis University. I loved having ten family and friends at our table for the recognition dinner. But the actual ceremony, held in their stunning Chaifitz Arena, with thousands of graduates in attendance, was marvelous. The keynote speaker was John O’Leary who is worth a google search. Absolutely inspiring!

 

We stayed a few days longer so Tom could meet our newest great nephew, Oliver Simon Woo. Of course, Oliver is perfect in every way, and we loved having a special time with him.

 

Approximately 2 weeks later, I returned to St. Louis to meet my sister Jeanne and drive to KC. Although she was born in Kansas City, MO, she has no memories of it as we moved back to St. Louis a short while later. I had arranged a tour of our old home with the current owners, a newlywed couple who are making it their forever home. We drove around the neighborhood, saw our church, and just talked about what our life was like when we were a young family living in America’s heartland. Glorious memories.

 

We loved visiting the nearby Truman Presidential Library, then drove to a Benedictine monastery as we had just learned the body of their foundress, Sr Wilhemina, had been exhumed and found to be incorrupt. That entire experience was thought provoking and spiritually nourishing.

 

A few weeks later, Tom and I headed to Iowa to visit my sister Jeanne and her husband, Wayne. This was Tom’s first trip to their beautiful Victorian home and the amazing town of Mt. Vernon. This is home to Cornell College. So many of their professors retire in the area and have created the most culturally enriched, socially aware, hands on, active community I have ever seen.

 

We had a lovely week getting to know their friends over card playing, touring the Hoover Presidential Library, then the historic Brackett House. Got to peek in their 80-seat movie theater and visit the shops on main street. But mostly we talked, ate sumptuous meals, relaxed, and read.

 

Tom, however, maintained his advocacy and patient empowerment work by holding his Zoom support meetings, taking his one-on-one support calls and attending his Zoom business meetings throughout our stay.

 

He was on one of those 2nd floor Zooms when I brought him his dinner. A request for a beverage led me to “fly” down those Victorian steps, make a right at the landing into the kitchen, to step on the floor, not realizing I had two more steps to go!

 

X-rays taken at the ER revealed 3 breaks in the upper femur of my dominant arm. Besides the breaks, the femur was twisted away from my body, and the break at the base of the knobby top of it meant that it crumpled over and was out of the socket. Ouch!

 

We returned to LA the next day, as planned. This was a very difficult flight for many reasons, not the least of which Allegiant Air permanently lost our luggage. It took many calls, emails, and filling out forms to finally receive a check five months after the flight.

 

June 27th began the rest of my year of learning how to use my left arm and trying to sleep with pain. I started PT once I was freed from my sling, only to learn I have a frozen shoulder!

 

Now, at least until Easter, my schedule includes 30-40 minutes of arm exercises, three times a day, plus two sessions of PT each week. I’d say my arm is about 55% back. PA says I should get 65% but I’m praying for 100%.

 

The wonderful travel, great experiences with family and friends, all of it happened under a cloud of sadness as I learned my dearest friend from childhood, Mary Evelyn White, died tragically on April 29. It has taken months to believe it and, having broken my arm, meant I could not fly to attend her memorial in the Twin Cities. I am so grateful I had six days with her last year and many calls and emails exchanged right before her passing. I also have sixty-two years of cherished memories of Mary.

 

Tom: Having to become a caregiver for Marianne during her recovery with her arm has been one of the most dramatic and life-changing portions of my life over the past year. I have always thought our communication was FANTASTIC, but I have learned that we both need to take the time to listen to each other. We had some difficult moments initially, but I think we both have grown during Marianne’s recovery. Frankly, though, I still wince as I listen to Marianne moaning as she works with her arm. What a trooper she is! My admiration for her ability to deal with me and my pain grows every day! 

 

Not to be outdone by Marianne’s health issues, my body tried valiantly to keep pace. My bladder cancer has disappeared now; I am now on annual cystoscope examination–using virtual reality to divert my attention makes the horrible exam almost bearable. Then I discovered that I have 3stage kidney failure. A scary diagnosis but I can live with it if I drink more water!! Getting “more mature” sure isn’t for the weak of heart! 

 

Marianne has covered some of our travels above. I am blessed to continue to have the energy and initiative to continue my efforts in the areas of patient engagement and patient empowerment.   I have continued to facilitate two weekly groups to help provide support for people living with chronic pain. 

 

With Marianne’s support and that of several members of the Tuesday group, we continue to have support groups for both Caregivers and Young Adults. We are still working on finding facilitators for a Women’s group and a Spanish-speaking group. I still can talk daily to individuals with chronic pain through my affiliation with WellConnected/Front Porch. 

 

My chronic pain advocacy efforts have continued at the National and State levels. After taking an Advocacy course given by the US Pain Foundation, I have been working with a group of California residents (the California Advocacy Team–CAT) to pursue legislation to support having insurance companies pay for non-pharmacological treatments in chronic pain management. Although this effort is just getting started, it has been eye-opening how difficult it is to even contact legislators and get a response. Finding a sponsor for a proposed bill has become the latest challenge. Seems that even being able to talk to a representative is almost impossible. 

 

Patients Rising has also presented me with a unique advocacy opportunity. After taking an Advocacy Master Class with Patients Rising (and attending a Fly-In to Washington, DC, last year), I was selected to join the Patients Rising’s Senate as a member of the Senate, the State Committee, and the Communications Committee. I have enjoyed working with so many passionate people to support legislation that will benefit patients with chronic diseases. 

 

My work with the American Psychological Association (APA) Committee on the Development of Guidelines for Treatment for Musculoskeletal Pain in Adults continues, but we have just finished the Public Comment period. We hope to publish our guidelines by the end of next year. Hopefully, the final report will be helpful for patients with chronic pain, as well as therapists. 

 

I am in the middle of reviewing study proposals as a Consumer Reviewer for the Congressionally Directed Medical Research Program (CDMRP)–always a challenging but rewarding job–but I really love the mental stimulation of trying to understand these “scientifically oriented” proposals.

 

Over the past year, I have become a Patient Advisor for the National Institute of Health (NIH) Patient HEAL Initiative Community Committee and a Patient Advisor for the National Comprehensive Cancer Network (NCCN) Committee for Guidelines for Adult Cancer Pain.

I have also been invited to speak at several conventions: the South by Southwest Panel, the “For Grace 2023” virtual conference and the Virtual Medicine 2023 (vMed23) conference. I also have been blessed with opportunities to be interviewed by Cedars Sinai and AppliedVR, as well as other organizations. I was just featured in a blog published by Cedars, that talked about my being credited as an author on a clinical trial report.  

 

I continue to be motivated to do everything I can to ensure that people with chronic pain know they are being listened to and have access to the information they need to make informed decisions about their health care. Patient empowerment, patient engagement, and quality of life for all who deal with chronic illnesses are my goals.

 

I am so blessed to have Marianne as a partner in life and in all my efforts. I know I could not make any progress in achieving my goals without her love and support. Thank you, Marianne!!

 

Oh, Marianne asked me to include the fact that we finally felt we had to get away from all our work and disappear for a week. We took a small cruise that went from Los Angeles to San Francisco, to San Diego, Ensenada, and then back to Los Angeles. We had a ball just being together, sleeping, reading, and doing as little as possible. We needed the break. Sometimes you just need to get away from your life!

 

Marianne hadn’t worked this year with the Strike and broken arm, but just the other day got a commercial that will air during the Super Bowl. She got a quick trip to Las Vegas! Mums the word until it airs.

 

We have had a busy year with travels and working from home. Aside from Marianne’s injury, we have loved a less-hectic life and spending time together.  

 

Again, we both wish each of you a very Merry Christmas and a healthy, Happy New Year!

 

Love,

 

Marianne and Tom

 

Dear Family and Friends,

 

Two thousand and twenty-two marked my 50th year as a professional actor. I decided to celebrate with travel. Lots of it!

 

My sister Jeanne met me in NYC in March for a jam-packed eight days. We met again in April in South Bend, IN, to join family members to watch our great-nephew pitch one of his last games at Notre Dame. John Michael Bertrand is now living his dream, having been recruited by the SF Giants. I got to St. Louis a few days before Jeanne arrived in late May, so I could see some of my many friends in our hometown. Once Jeanne came, we headed out shortly thereafter to Nashville, to meet my sister Cecilia and her daughter Celia. I finally understand what Nashville is all about!

 

In June I accompanied Tom to DC where he was invited to lobby for Patients Rising Now and bills affecting patients’ care. While he was up on the Hill, I lunched with various friends. The wraparound VA stays were to visit Tom’s family, including his sister, cousins, niece, great-nephew, accompanying in-laws and family dogs!

 

Our August plans were scraped as our Montana host came down with COVID.  Hope to recoup that trip in 2023. 

 

We did get to a long weekend in San Diego in September as I was keen to see the new musical COME FALL IN LOVE. I predict a Broadway run.

 

October meant Minneapolis/St. Paul and a long awaited catch up with my last remaining mentor, 96 y/o Terry Kilburn. Every minute with TK is a joy, filled with his “memory palace” stories, deep laughs and usually chocolate. Since I went to grad school there, many friends remain; foremost is my childhood and former U roommate, Mary White, who “tooled” me around much of my 6-day stay. Then I was on to Mt. Vernon, IA, where Tom and I hosted a 40th wedding anniversary/housewarming party for Jeanne and Wayno. Jeanne overhead two of her guests gush “fancy!”

 

I was back in St. Louis late in November as my youngest great-nephew Oliver was baptized. Was able to come in a few days early to see more of my local friends before family festivities took over.

 

Latest jaunt was this month. Tom and I headed to Cambria, CA for a handful of days. I finally saw a true meteor shower, got to the architect Julia Morgan tour at Hearst’s Castle, wonderful dinners out and a fairly exhaustive tour of their much celebrated Christmas Market. (travel photos/details on my Instagram #mmsnapped or personal Facebook page)

 

Knowing I would not be available to audition, let alone work, I did ask the good Lord to give me one job -  for my ego. I shot a commercial for Comcast Xfinity which has yet to air. I just didn’t want my 50th year to be the only year I didn’t book.  HE gets me. Then out of the blue, my old Geico spot “Aunts” was renegotiated and is currently airing. (https://auralcrave.com/en/2022/12/20/expired-the-cast-of-the-old-geico-aunts-commercial/)

Did a few other career related things: 

The podcast Jesuitical: What’s it Like Being a Catholic in Hollywood? Segment 12:38 to 40:38. https://www.americamagazine.org/arts-culture/2022/01/14/marianne-muellerleile-catholic-242205

 

My undergrad alum magazine did a feature on me:  "How I Got Here"  

https://www.slu.edu/universitas/archive/2022/how-i-got-here-marianne-muellerleile.php

 

I was the guest speaker at a local Senior Arts Center after their viewing of a feature I did called QUEEN BEES.  Just shared behind-the-scenes stories of the shoot and fielded questions.

 

Got a Google alert that the full 2006 show of THE SOUND OF MUSIC at the Hollywood Bowl, LA Phil Orchestra w Melisssa Errico, John Schneider, Ben Platt, Marnie Nixon, Jeffrey Tambor, and me as Frau Schmidt. https://www.youtube.com/watch?v=UIDvM3HPJQM

 

The link below is about THE TERMINATOR cast - where they are now. I am kindly mentioned.

https://www.looper.com/1138494/whatever-happened-to-the-cast-of-the-terminator/

 

Between the travel I spent my time shuttling between four dental specialists. Oh my heavens! A small fortune later my teeth look exactly as they did before I started!

 

My only other news is that, after 11 years of fundraising for Heifer International, I broke through 500k! So much gratitude to many of you for being one of my Heifer Team donors.

 

Here is some of Tom’s year of endless advocacy, interviews, zooms, presentations, lobbying, support groups, consulting, trial participation, evaluating, ETC. He’s also dealing with additional or prolonged medical issues, but it’s the chronic pain advocacy that gets him up every day to contribute in some way to that community.

 

1. He has agreed to be a patient consultant for Duke University for the next five years. (Still awaiting word on funding of this clinical trial.)

 

2. Article on Tom Chronic Pain Management Research Program (CPMRP) Consumer Peer Reviewer: Managing Chronic Pain through Support & Advocacy https://cdmrp.health.mil/cwg/stories/2022/Tom_Norris_profile

 

3. He is in his 8th year working for the Department of Defense under the Congressionally Directed Medical Research Program (CDMRP) Chronic Pain Management and Research Program (CPMRP), evaluating grant submissions to fund chronic pain medical research. (While we were in Cambria last week, he had two, 5 hr zoom meetings to wrap up this year’s work)

 

4. Tom has been taking certification classes to be a public speaker for patients’ advocacy under the auspices of Patients Rising and US Pain Foundation. His interest is developing in this area and he expects to be doing more of it in the future.

 

5. He won an essay contest sponsored by Patients Rising Now, which is why he was flown to DC to lobby before the US Congress. Although it was very physically taxing, he loved it. https://acpafacilitatorsresources.com/2022/07/10/what-does-personal-engagement-provide-for-someone-with-chronic-pain-my-thoughts-tom-norris-chronic-pain-advocate-person-with-chronic-pain/

 

6.  Tom was on the planning committee for the international non profit, World Patients Alliance, (https://www.worldpatientsalliance.org/) where he helped develop their first convention held this past October in Rome.

 

7. Tom gave testimony at a legislative meeting of the CA State Congress to help promote a bill that encourages payers to cover FDA approved non-pharmacological (Virtual Reality) alternatives to opioids. 

 

8. He was the guest speaker at the first company wide gathering of remote workers for Applied VR. They develop VR programs for medical use. Tom was the first chronic pain user of their VR programs to ever speak to them about their product, the good, the not so good, and suggestions for improvement.  It was a VERY enthusiastic group and a lively give and take. We loved the overnight getaway on the shores of Redondo Beach.

 

9. Here's a link to the Radio Health Journal segment he is in: https://radiohealthjournal.org/medicine-in-the-metaverse/. It's also available on all of the major podcast platforms (Apple podcasts, Spotify, Google Play) if you search 'Radio Health Journal". 

 

10. Tom did an 8-hr video shoot in our home for AppliedVR. I acted as his manager, location scout, and segment advisor. Tom had them donate his stipend to Heifer through my fundraising page.  You know how much I loved that!

 

11. Tom accepted a new job offered to him through his consulting work for Cedars Sinai. He is now a Patient Advisor and member of the National Institute of Health’s HEAL Community Partner Committee!!! https://heal.nih.gov/

 

12.  He is an active participant of the National Academy of Medicine’s (NAM) work on a Person-Centered Chronic Pain Journey Map. https://nam.edu/programs/action-collaborative-on-countering-the-u-s-opioid-epidemic/chronic-pain-journey-map/

 

13.  He continues his work as a Patient Advisor/Advocate for the American Psychological Association (APA) Guideline Panel for Treatment of Musculoskeletal Pain in Adults. https://www.apa.org/about/offices/directorates/chronic-pain-panel

 

14. He is involved either as a consultant or a participant in several chronic pain studies. Most of this work is done with Cedars but one is done through UCLA.

.

15. He was recently interviewed about the use of Virtual Reality as a tool for chronic pain management for the Voice of America.

 

16. On Dec 1, Tom spoke at the Healthcare Common Procedure Coding System (HCPCS) public meeting support of the AppliedVR request for a unique HCPCS code to recognize VR treatment for chronic pain management, specifically to  identify the use of a product outside of the healthcare practitioners’ care setting.

 

17.  Tom has continued his individual, nationwide, chronic pain support groups via Zoom and telephone.  He now has more than 400 people interested in this support.  His biggest emphasis this year has been to train others to facilitate these groups to ensure that this support is continued and expanded.  He has established a new “youth-oriented” chronic pain support group and a “caregiver” support group.  He has also helped to establish two other chronic pain support groups throughout the US. 

 

One of the reasons Tom is so pursued is that the medical researchers who are studying chronic pain have never had an actual chronic pain sufferer (with his resume) on their research team. It has been a game changer for them.  They constantly recommend him to other researchers.

 

Tom has had a great time board and bagging his comics as he relives some of his favorites. He also remains a voracious consumer of all things Sci Fi, Fantasy and Egyptology.

 

Yes, there have been loads of mundane, annoying, frustrating events throughout the year, same as we all experience, but there’s no point in reliving them.

 

And we play gin rummy almost every night after dinner, through the David Muir Evening News,  and Jeopardy. The big news is that for the first time in our 36-year relationship, Tom won his first 10,000 point round. I think it was an anomaly. He’s determined to prove me wrong.

 

Merry Christmas and many blessings throughout the coming year,

 

Marianne and Tom

Facebook:  https://www.facebook.com/tom.norris.31

Twitter: @jtomnorris

YouTube:  https://youtu.be/FOKwI_xAbTs

YouTube:  https://youtu.be/0hkmqk-F99g

YouTube:  https://youtu.be/ehvlzhNNj9U

YouTube:  https://youtu.be/KVCys-YP2yY

YouTube:  https://youtu.be/2p2L5USJCWA

Spectrum News 1:  https://spectrumnews1.com/ca/la-west/exploring-your-health/2019/09/23/why-pain-hurts--understanding-pain-and-the-brain-ca

Spectrum News 1:  https://spectrumnews1.com/ca/la-west/exploring-your-health/2019/09/23/hijacking-the-brain--scientists-are-using-vr-to-treat-chronic-pain-ca

Spectrum News 1:  https://spectrumnews1.com/ca/la-west/exploring-your-health/2019/09/23/using-meditation-and-yoga-to-relieve-chronic-pain-ca

National Geographic:  https://www.nationalgeographic.com/magazine/article/scientists-are-unraveling-the-mysteries-of-pain-feature 

WCAX 3:  https://www.wcax.com/content/news/Study-suggests-pain-could-be-risk-factor-for-suicide-492898181.html 

British Journal of Medicine/Protocol for NIH:  https://bmjopen.bmj.com/content/11/6/e050545

Doctors 2.0:  http://www.doctors20.com/patient-experience-virtual-reality-cedars-sinai-vmed19-silber/

Pain Podcast:  https://www.bloodstreammedia.com/the-pain-podcast-episodes/s2e8-the-final-journey

NPR Take Two:  https://www.npr.org/sections/health-shots/2019/08/19/751495463/got-pain-a-virtual-swim-with-dolphins-may-help-melt-it-away

Website:  https://acpafacilitatorsresources.com/

Website:  https://chronicpainla.com/

Seminar for Alliance to Advance Comprehensive Integrative Pain Management:  https://painmanagementalliance.org/behavioral-health-as-part-of-comprehensive-pain-care-and-payment-design/behavioral-health-symposium-presenter-bios/

https://painmanagementalliance.org/behavioral-health-as-part-of-comprehensive-pain-care-and-payment-design/behavioral-health-symposium-materials/

https://fortune.com/2021/05/14/virtual-reality-vr-uses-health-care-pain-labor-delivery-mental-health-psious-fortune-brainstorm/

http://www.forgrace.org/get-involved/share-your-story/tom-norris

Upcoming:  NY Times article(s)

Bloomberg News