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!
Marianne and Tom
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