2023 December Christmas

Dear Family and Friends,

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
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2022 December Christmas

December 2022

 
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.
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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
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2021 Tom's Chronic Pain PR exposure

Tom Norris  Chronic Pain researcher, advocate & facilitator (spouse of Marianne Muellerleile)

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
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2021 Christmas Letter

 Dear Family and Friends,

ABCXYZ
I’m kicking this year’s letter off with a bit of business.  Please delete our home phone from your records. At least every other day I consider canceling it due to robo calls. We never pick it up.  
 
I/we remain devoted to Heifer International and its mission to end hunger and poverty while protecting the earth. This is my 18th year as an active donor, volunteer and fundraiser. I invite you to join my team https://fundraise.heifer.org/mariannemuellerleile especially in this month of December as a Group of Generous Donors is matching all December donations.
 
I’ve been blessed with work as I did two voice overs, one for Jameson Whiskey and two for Comcast Xfinity. My episode of THE KOMINSKY METHOD aired, and I did zoom readings of OEDIPUS REX, THE IMPORTANCE OF BEING EARNEST and TROJAN WOMEN. I’ve been with The New Phoenix Theatre for 14 years and love exercising my theatrical chops on great plays. My feature film, QUEEN BEES, was  finally released. They played my 6 GEICO “Aunts” commercials through the year and I just finished shooting a BMW commercial to air on the Super Bowl, 2022.
 
I happily flew to St. Louis three days before my sister Jeanne drove in to meet me. Was able to see a few old friends, before we shared the excitement of Allie and Kel Vin being pregnant, and planned a zoom AND in person showers. Then Jeanne and I took a road trip to Dayton to be with our sister Cecilia and her family before we all drove to Cleveland for her granddaughter Monica’s vow renewal/wedding of her dreams. We drove back to Allie & Kel’s and I flew home. 
 
Finally got to take my twice canceled three week trip to NYC/UAE/Oman in October.  I have yet to organize my photos or journal notes but, suffice to say, the Middle East was the most transformative trip I have ever taken.  
 
We are both well but Tom has had a recurrence of his bladder cancer from last year. 
 
He had the new cancer growths removed under a local but it was while he was using his VR (virtual reality) Oculus 2 and the discomfort was minimal. He was so thrilled to have had that personal experience to share with his VR research team at Cedars.
 
Tom won't be seeing people for a long time as he has all five medical issues that the CDC lists for those who are vulnerable (limited lung capacity, cancer, diabetes, high blood pressure & heart disease.)  We just lump it under his chronic pain but he's had the other stuff, most for many years. And all of it is being controlled or addressed.
 
We are encouraged and hopeful that someday he will be able to be in the general public. But it's that 15% vulnerability that a vaccine/booster cannot eliminate, and all the people who won't vaccinate, and then the current variable and the yet to appear variables that make his being in public dicey.
 
We're leaving it in the hands of the Lord.
 
Tom is mentally strong about the whole thing and having his best life in spite of it.
 
We managed to have a little getaway time too. I had two weekend commitments which involved overnights so we figured he’ll drive us up there, I’ll check us in, then drive directly to the room.  So he enjoyed our personal mineral hot springs tub, as well as room service, while I enjoyed 48 hours of surprise celebrations for Juliet Mills 80th.
 
The next weekend we drove to San Mateo, CA, to meet 15 other Muellerleile’s (my brother Jack and his brood) to see my great-nephew, JD Bertrand, play Notre Dame football against Stanford. They decimated them. We stayed an extra day so I could zip around SF to see a handful of long-standing pals. Once again Tom laid low with his books, computer, TV, room service and his favorite wife at nights.
 
Tom continues his work as a consultant and patient partner for research at Cedars-Sinai and the National Institute of Health. He was profiled by NPR, National Geographic, the New York Times, Lifetime and more. Truthfully, he is way busier than I am.
 
Tom was hit with a curve ball after a VA medical zoom review of his PTSD status.  He has put so much effort into addressing his PTSD, managing it, that he wasn't prepared for the aftermath flood of excruciating memories, painful physical reactions, thunderous heart racing, fear of sleeping, ETC.
 
Six months later he says he has it back in a mental box, on the floor of his mental closet and is just about ready to push it to the back.
 
He did several additional rounds as consultant/reviewer for DOD (Department of Defense) 2021 Peer Reviewed Medical Research Program Pain Management Panel.
 
Tom was thrilled to have an authorship credit on a published work in the British Medical Journal from his work as a patient advocate/partner at Cedars-Sinai on a study on Lower Back Pain control with VR.
 
He has been hired as a consultant/patient for a Global Alliance study: “Towards a global strategy to improve musculoskeletal Health”; in which he and others are developing guidance for treatment of chronic musculoskeletal pain.  
 
He is also a patient partner/consultant for a Cedars Sinai/UAB/Ochsner Health/ Stanford University, Northwestern Medicine study on “Transcending COVID 19 barriers to pain care in rural America: Pragmatic comparative effectiveness trial for evidence-based, on-demand, digital behavioral treatments for chronic pain, which will compare two different methods of remote chronic pain management. His work on these VR related projects will last another four years.
 
He is also a patient partner/consultant on yet another VR study on the effectiveness of VR for chronic pain management on those dealing with abdominal cancer pain.
 
He’s already started that work which will continue for four more years.
 
For over 30 years, just a short time after he developed chronic pain, Tom has volunteered for the ACPA (American Chronic Pain Association) as a Regional Director, facilitator, spokesperson, media manager, you name it.
 
This year the ACPA changed hands, new officers, new board, and changing structure to the possible exclusion of facilitator support groups. 
 
Time will tell whether he will continue volunteering for the ACPA. However, he plans on continuing to facilitate his two chronic pain support groups, as long as they are wanted.
 
Lest you think all he did was “work,” I want you to know Tom remains an avid comic book collector, reader of comic books, and books, in general. He goes through his monthly comic order in one evening, and manages to read on average ten books a month.
 
He also spent many, many, many hours in zoom Ancient Egypt, taking tours and classes. If he can ever get out of Pandemic Prison, THAT is our next destination.
 
So that’s basically what we’ve been doing, in the busy part of our lives. 
 
But the best part, the core part, the foundational part of our lives has been growing closer to our Creator, renewing ourselves spiritually, not letting the clutter of our daily lives overshadow the true meaning and purpose of our lives, to love and be loved.
 
We remember all those who have passed, those struggling with holiday blues and loneliness and grief, may you find comfort, peace, and faith as you move forward.
 
And we thank the good Lord for the birth of our newest great, Oliver Simon Woo, on October 24, grandma Jeanne’s birthday.
 
Love,
 
Marianne and Tom
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2020 Christmas Letter

 Dear Family and Friends,

 
We returned from a rewarding but very difficult trip to Peru in January. In February,  Tom flew to DC to work with the Dept of Defense again, evaluating medical grant requests for work on chronic pain.
 
I stayed home and shot two commercials, for Kabbage (never aired) & Geico (“Aunts” multiple commercials found on YouTube.com, et al). Then prepped for a 2 week trip to NYC, UAI & Oman. An hour after I hit NYC,  news of the pandemic had me cancel flights and return to LA pronto. I/we canceled 5 more trips scheduled for this year.
 
So here we are,  like the rest of you, like the whole world, in a sort of limbo existence, that has been both difficult and rewarding.
 
We have lost many who were dear to us, chief among them my niece, Cindy M Bergendahl,  and my best friend of 48 years, Mary Pat Gleason. Beautiful memories lessen the loss.
 
Because of Tom’s medical status, we were property bound until July when he started having blood clots in his urine. We took a 14 week journey through bladder cancer, followed by a miraculous pathology report stating the cancer was removed completely, no further treatment required, periodic check-ups will suffice.
 
As in past years, Tom remains a consultant/patient partner for research at Cedars-Sinai and the National Institute of Health, as well as chronic pain advocacy and support involvement.
 
He is on Zoom 8 to 10 times a week, resting/sleeping in between, writing articles, evaluating grants, doing final editing of sci-fi novels, doing exercises with his VR Oculus 1. 
 
He has done so many speaking engagements, presentations, symposiums, webinars, podcasts, and videos. He has been covered in NatGeo, NPR, Lifetime, Spectrum, and been published often, but he is most proud to be a credited writer in the Cedars Sinai medical research articles placed in leading medical journals.
 
His area of chronic pain involvement has expanded to include: therapeutic use of Virtual Reality,  best communication practices between doctors and chronic pain patients, development of guidelines for treatment of musculoskeletal pain,  pain management and cognitive behavior, evaluating proposals relating to bladder cancer, diabetic foot pain, and one-on-one support for those in crisis, among others. 
 
God’s plan for Tom’s life became laser focused after his gift of chronic pain. We believe his suffering is meaningful and redemptive.
 
Below are three links Tom thinks you will most enjoy:
 
VRx book review: visuals & discussion on the therapeutic benefits of virtual reality
https://www.chevaliersbooks.com/brennan-spiegel
 
The Mighty with Cynthia: Tom’s in depth personal pain journey https://www.facebook.com/watch/live/?v=391055222038096&ref=watch_permalink
 
An interview for NPR program Take Two, National Geographic: World of Pain:
2020.https://www.scpr.org/programs/take-two/2020/01/06/20480/ (At the 19:57 mark to 30:30)
 
As for me, the pandemic has given me the gift of time. As a project driven person who has lived happily with a To Do List every day since high school, my days fly by. I am very pleased to be tackling many long neglected projects, some completed, most ongoing.
 
I took a 4 day Zoom retreat in July that proved pivotal in how I now strive to view life. My goal is to accept people where they are - to find our shared belief/goal, and set aside our differences. This has given me renewed tolerance and patience. It has been especially helpful in my understanding systemic racism, my own white privilege and fragility. My journey inward has been the most rewarding part of 2020.
 
I shot a SLING TV commercial from home in April.  Then did another project for them in November. https://www.youtube.com/watch?v=m-5fiTBPktE
 
Also shot an episode of THE KOMINSKY METHOD with no air date available.
 
Remain devoted to Heifer International who did a story on me recently:  https://myheiferfoundationgiving.org/tell-your-story/#post-28314  
 
If you want to join my team I’d love to have you: https://fundraise.heifer.org/mariannemuellerleile 
 
I’m zooming for regularly scheduled sibs catch-up, friends chat, individual pals, WW, choir, block club, prayer groups, Mass, auditions, industry/agents/back to work, doing and seeing plays/ readings, museums, art, union health plan, celebrations for: a wedding, memorials, birthdays, a graduation, and so many educational zooms on social justice, racism, and on and on and on.
 
This chaotic time has allowed me to get more sleep than I’ve had since grade school and to finally read books whenever I want.  
 
Tom and I have loved having all this time together. So much laughter, card playing, discussing our projects, working together on some, watching TV & movies, cooking, a little dancing, talking about our future, discussing the present and sometimes, delicious spooning in afternoon naps.
 
Since Tom and I both post so much on social media I know that most of you already know what we are doing. So, if you’d like to receive our Christmas letter next year,  please let me know by responding to this email.
 
I think we could all do with a lot less email and more time to enjoy life.
 
We are sending you our love and prayers for a beautiful Christmas, a wonderful New Year, and a Covid 19 vaccine as soon as possible,
 
 
Marianne & Tom
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