Toni came cussing and confused, kicking and screaming into medical retirement and my life. Most ailing people resist intensely, wanting to earn, to do, to be responsible, to feel better, not wanting to learn about living with chronic illness. Most would rather not have a desperate, long term need for a support group. Toni had a way of resisting stronger, harder, louder than most while simultaneously embracing the coping tips, referrals, and camaraderie. Thus began our getting her settled, our great friendship, and our collaborations in supporting folks suffering similarly, as she liked to say it.

By soothing others and smoothing their paths to understanding and acceptance of the frightening changes to their health and lives, Toni came to understand and accept more of her own situation and self. Our names and home phone numbers are listed with the CDC and organizations around the world which led to numerous phone calls and e-mails from folks looking for information about doctors, symptoms, coping techniques, and moral support. She generously offered time, comfort, companionship. Toni facilitated in-person monthly meetings of the group for 4-1/2 years, enriching support with face-to-face time and hugs. Toni gave great hugs. She was tickled to read a about study showing 17 hugs a day was optimal for health.

After hugging, and her daughter, Toni Rae had many passions including talking, writing, art, food, healing, politics, and policy. But in order to continue any participation in life,Toni had to use new accommodations. To reduce the effects of super sensitive circulation which gave postural tachycardia (POTS) or wipe out momentary low blood pressure (NMH), she used a recliner, sports seat, and air conditioning and fans with desperate consistency. Use of a phone headset and iDevices lying down kept her connected, entertained, knowledgeable, interactive, and at least enjoying pictures of food when cooking became impossible and photos of art when visiting a museum was beyond the realm of the reasonable.

To satisfy her inner storyteller, writer, grammarian, and greeter, Toni Marshall was a prolific contributor to the group's CFSnova website and to the group’s CFSupport and EGGdish (Elly’s Gratitude Group Dish) e-mail lists. She shared informative articles found or written, observations, and intense feelings. She wrote and delivered the welcome address to 140+ people at the June 2005 kNOw More CFS conference. She joined a Chicago based email list for Fibromyalgia and wrote for that group’s newsletter. Toni co-authored articles with me in The CFIDS Chronicle, “Inclined to Recline, Our Tips for Managing Orthostatic Intolerance,” and in Pain Connection, “EGGing Each Other On - Incitement to Insight.” 

Staying politically active, Toni lobbied members of the U.S. Congress several times in DC with The CFIDS Association of America. She signed petitions and wrote letters to Congress on issues related to her sets of conditions. She supported efforts to make and share documentaries on CFS designed to bring change, more research, relief. 

For more connection with those who could understand and help, Toni attended DC area health conferences by CFS and FMS organizations, The Weston A Price Foundation (WAPF), The National Dysautonomia Research Foundation, and the Dysautonomia Youth Network Association. She wrote and spoke of her experiences and new found friends from each often.

Toni gave educational interviews about CFS/ME/FMS/OI: a television spot for her local Fox News, a Baltimore radio program piece hosted by a doctor, and a interview for print in the local Annapolis, MD, newspaper, The Capital, “Arnold Woman Sidelined By Exhaustion - Chronic Fatigue an ‘Under Recognized’ Illness.” The National FM Association awarded her a 4 night, most expenses paid scholarship trip to Warrenton, VA, to become an official trained International Leader Against Pain. She loved meeting the advocates from all over the world and contrasting their perspectives and experiences. She appreciated knowing first hand what gets into a final media piece is often not what the interviewee thought most important or accurate. 

Toni spent hours appreciating art and nature and saving images to her iPad. She colored doodles intensely and made thousands of in-app kaleidoscopes. She participated in the Creative for A Second or Two project, a set of journals that circled the world in which people with CFS embedded small art projects. In describing her fabulous colored doodle contribution, she wrote, “Coloring inside the lines is another rule but is not possible for me.” No, thankfully, she couldn’t be confined. With her co-healing, gratitude group support buddies, took a teleclass from author Alissa Lukara, called Writing Grace—Writing as a Path to Transform Your Life. 

She visited her aunt in Nebraska via one of Amtrak’s cars for people who need to lie down, have alone time, so they can have energy for the stops and destination. Where she changed trains, Toni checked out a giant seashell sculpture. It invited her in and she climbed out ready to travel and transform further. 

Delicious flavorful food brought Toni great joy. The science, spirituality, and permission for buttered or otherwise full fatted, bone broth enhanced food given by the WAPF folks multiplied that joy. She loved the combination of food and community at the support group’s annual pot luck meals and restaurant events.

Egg dishes and the EGGDish e-mail list were favorites. Toni loved eggs over easy and the easing, freeing concepts and posts from EGGdish. Using a cushion or frame of gratitude with an intention for healing, members often become less upset, less afraid, less judgmental, more patient, more okay, more at peace while adjusting to not being able to work, cook, clean, socialize, sit long, stand at all, or face great physical consequences trying. Toni's growing sense of healing, happiness and the feeling of home were felt, facilitated, and recorded in EGGdish.

Toni Marshall was an integral participant and supporter of one the group's Awareness Day events, an educational teleconference featuring her dear friend me, Elly Brosius, facilitator of The NoVA CFS Support Group for 24+ years, and another dear friend, Jonathan Gilbert, herbalist, acupuncturist, of The Gilbert Clinic. That call was part of the When Pushing Stops Working tour for which Toni had arranged one presentation near her home. Whether pushing to do something or get somewhere was working or not or was worth it or not was a conversation they kept up long after. The conclusion was it always worth it (once a year or so) to push a little to get to see each other because our mutual nourishing did replenish.

Mostly by phone, Toni and I talked and talked, about politics, religion, writing, saving and spending money, all the stuff of life. Perhaps most talked about were taxes - the things that tax us and OMG income tax - and constipation.We talked a lot about shit, and we called bullshit on each other and others often. So in awe she was that a life time of painful, agonizing constipation was finally gone, she said in her blog Gratefully Living in My Late 60's and Beyond,

"I turned 68 years old the other dayand I am delighted to be able to do things that I did not expect to be able to do in my 60s. I am delighted to be able to sleep well every night and get up to go to the bathroom without much trouble.”

She said,

"It was due to the support group, Northern Virginia CFS, FM, OI Support Group, for my disabling conditions that I found many ways to improve my daily life,improvements that include daily gratitude practice so that I live more peacefully daily than I ever did before.”

I’ll add it was also due to her willingness to use frequent low dose supplementation, adapt her diet, take Chinese herbs, get energy medicine, and be unconventional in her use of conventional medicine, and to her including the mind, emotions, and soul in her healing efforts. Oh, and all the hydrating, electrolytes, dark chocolate, laughing and hugging. Where once she had to hold on ever so tight for dear life to survive, she came to a place where it was safe to let go, have a different kind of freedom. She found herself more and more at home, in a community, in her house, in her skin, in her whole self and roles.

Toni was serving as a co-leader for CFSnova, CFSupport, and EGGdish, receiving and providing support and guidance through e-mail, phone-in meetings, and phone calls until the sudden events that took her to the hospital in early October 2016. Toni lingered, kindly giving us time, and giving herself time until Election Day.

Dying on Election Day was no coincidence. It was commentary on politics and choice. Silenced now, she is still speaking volumes.

Shortly after her marriage ended, Toni relocated to the Annapolis area and soon started working for the Maryland State Treasury Department where she would remain employed for the duration of her working life.

In 1979 Toni bought a home just outside Annapolis, became involved in the women’s movement, taking action in 1982, traveling with her 10-year-old daughter, Shelley, to Florida to canvas for the ERA. She also served as the local chapter president of NOW (National Organization for Women).

Toni's love of music and community was expressed through her volunteer work with the Annapolis Brass Quintet, participation in the Annapolis Chorale and later, a DC area volleyball league. She loved going to the Maryland Inn and listening to Charlie Byrd.

Toni’s traditional working life came to a close sooner than she’d anticipated with a diagnosis of Chronic Fatigue in the mid 90’s. Not to be daunted, Toni became involved with CFSNova (Northern VA (NOVA) Chronic Fatigue Syndrome / ME & Fibromyalgia & Orthostatic Intolerance Support Group) in 1997, and would go on to serve as a co-leader for the group for several years until her sudden hospitalization in late 2016.

Toni was the oldest of six siblings, the quiet one with a mischievous side - light hearted and fun with a flare for style and a love of the arts.  Toni was born in Nebraska on April 27, 1948, moving shortly after to Pennsylvania with her mother, Virginia, and Aunt Opal; eventually moving to Maryland where she lived her whole life.  Being the eldest, Toni often held the fort down, taking care of Peggy (me) and Buddy who were seven and nine years younger. My fondest memories are of Toni and our sister, Sheri (deceased - born in October 1949) singing while they washed the dinner dishes, Toni, the soprano.  By the time Barry and Kathi were born, Toni and family moved to Bowie, Maryland in 1964. Adjusting to the move became even greater when her childhood sweetheart, Donald, tragically died in a car accident within a few months.  She courageously faced her loss, graduating Duval High School in 1966. She turned to her love of fashion, cutting out clippings from various magazines and the arts, singing in her high school glee club and church choir. Toni was fearless and perseverant, breaking the family mold to pursue her personal goals, going to college, excelling in accounting.

Toni was adventurous and cultured.  As soon as she had an income, she showered her family with beautiful gifts (me, a yellow polka dot dress and two piece bathing suit for my 9th birthday - I still cherish that moment)...personally exposing me to my first concert and my first show.  We all remember trips to DC on the mall, the museum and the Jefferson and Lincoln memorials.  

I especially remember Toni's marriage to Ansel Marshall in 1969 and the birth of my niece, Shelley. Already a pioneer, Toni breastfed in a day when it was unheard of and made sure Shelley was in a carseat when most didn't know they existed. She loved to sew clothing for Shelley and herself.  Friends and family loved when Toni Rae entertained us with her amazing cooking and baking skills. She taught me about James Beard and gourmet food.Toni truly was my greatest teacher and is my hero.  Always giving the best gifts, the very best, herself, as long as I remember.