Susan Terrell Simmons had a pure, bright lyrical soprano voice. Any song she would have sung to her friend, Pam McCoy, would have relied on the same qualities that marked their lifelong relationship – both the notes and the spaces between the notes were essential to the melody. Their bond was forged by time together and time apart, starting at birth and lasting until Susan’s death this past December. Ultimately, their melody as friends became, literally, their shared voice.
Ties That Bind
Pam’s and Susan’s bond began with their families’ connection in a small, rural community in south western Ohio. As self-described “farmgirls,” they grew up sharing the same values, activities and rhythms to their lives. Pam jokes that she and Susan were playpen pals, where their surroundings were as significant to their friendship as their games and good times. They both were daughters of staunch Quaker families with long histories in the community. The important marks their families made in Clinton County were later deepened by each of them as individuals. The Quaker values they learned as girls, guided their contributions and lasted throughout their lives. The Quaker commands of integrity, service, stewardship, equality, peace, and social justice were integral to how they made decisions, took action and related to all those around them.
Individuality was as prominent in their friendship as all they had in common. Each always sought her own path, and sometimes those paths led them together. Pam left her community at age 13 to head east to a Quaker boarding school in Pennsylvania. Susan, in a link to both Pam and to her family roots, joined her there a year later. Their friendship matured as they did, strengthened by the challenges of a different culture and the demands of becoming an adult during the outrageous 1970’s. Their paths diverged when they went to college, and Pam recalls that the last time the pair was together before recent times was at Susan’s wedding in 1980.
Their bond never broke over time, despite distance and different life paths. Pam’s path took her to the state of Washington where she established herself in business and led a successful career in marketing. Susan married and remained on the East Coast, moving first to Florida and ultimately to North Carolina. After teaching drama and English, Susan launched a career in a field related to Pam’s. She developed a career in marketing research, ultimately becoming a highly respected senior vice president at a global firm. Nearly forty years passed before the friends reconnected.
By 2014, Pam had returned from the Pacific Northwest to live on her family’s Ohio farm, in the same place she and Susan had grown up together. While Susan, now retired, was living in North Carolina, she returned to Ohio every quarter to visit her mother, who resided in a retirement community close to Pam’s farm. This opportunity brought their paths close again.
When Susan and Pam reconnected in 2014, it was as if they had never been apart. They found ways to get together, and they renewed the ties they had forged since birth. In a short while, Pam encouraged Susan to join her own long professional experience to Pam’s, and they both became members of the Board of Trustees of their local Quaker college. This shared responsibility brought more opportunities to spend time together.
The two enjoyed travel together, too. Pam visited Susan’s home in North Carolina several times; met up with Susan and her husband in Atlantic Beach, N.C.; and Susan joined Pam on a hiking trip in the Austrian Alps – to the same Austrian Alpine valley they had visited after finishing their junior year in high school.
Leaning on Love
In September 2018, Pam and Susan were on their travels together in Austria, enjoying the serenity of the Alpine forests. Only one year later, their lifelong bond took a much different path — the next, most challenging demand their friendship would have.
In October 2019, Susan was suddenly diagnosed with a debilitating, incurable illness — an aggressive form of amyotrophic lateral sclerosis, ALS. When Pam heard the devastating news, there was no question that she would be at Susan’s side.
Thus began the most remarkable chapter of their long relationship – that after almost forty years apart, the two would be inseparable for the rest of their lives together. Pam was devoted to Susan and took on immense responsibility for her care. In turn, Susan offered Pam immense trust, empowering her with making vital life decisions.
A Shared Battle
An adage of soldiers — foreign to Pam’s and Susan’s upbringing as pacifist Quakers – is that a soldier never goes into battle alone. Susan’s struggle with ALS showed this truth through its every demand. Susan’s battle with ALS was fast and furious. Pam’s determination to do everything she could for her friend was equally fast and furious. In a year’s time, Pam recalls, Susan went from being able to haul heavy bags of mulch to her garden beds to losing the ability to move and ultimately to speak. During that devastating year, Pam was constantly at Susan’s side, starting even from a distance. Pam traveled to North Carolina to help Susan sell her home and worked with Susan’s family to help her relocate to an Ohio retirement community, the same one in which her mother had resided.
Knowing that ALS would eventually rob Susan of her ability to communicate, Susan asked Pam to take on the responsibility of medical power of attorney. In an illness as devastating and complicated as ALS, this role is essential, fraught with complexities and full of hard decisions. For her part, Pam says it was a given that she would assume all the tasks and obligations which that responsibility entailed. For instance, Pam researched ALS resources that helped guide Susan in her medical and care decisions. Pam helped Susan’s friends understand and cope with the impact of ALS on Susan and on her loved ones. Pam learned everything she could about the disease, its course and its consequences. She arranged all Susan’s doctor appointments. Susan relied on Pam to help secure a specialized wheelchair and communication device, setting up long-term health care payments in a complex insurance system. Pam conducted daily conversations with the retirement facility staff about Susan’s care, and during Susan’s last months, Pam worked through enormous complexities to obtain hospice services
A Shared Voice
Pam’s most profound responsibility was the need to become Susan’s own voice. A most heart-wrenching and difficult aspect of Pam’s closeness with Susan was to watch her gregarious friend — a gifted communicator, actor, singer and drama teacher — slowly lose her ability to speak. As Susan’s abilities faltered, Pam became Susan’s hands and voice.
Of course, Susan could have given in to self-pity and withdrawn from the world of people and words. This was not Susan’s style. Instead, with fierce determination and even greater perseverance, she mastered use of a highly complex, virtual communication system to stay involved with the world as long as possible. Every day, Susan used her eyes to laboriously create emails, letter-by-letter and word-by-word, to keep in touch with family and friends. Pam supplemented Susan’s communications with more detailed monthly emails shared with more than forty friends and family. Pam would painstakingly draft the emails, and Susan would edit them.
Susan’s communication to friends and family included the hard announcement, in February 2020, that she needed to give up her assisted living apartment to secure a private room in the home’s skilled nursing section. With this increased level of care, she could receive the medical attention she knew she would need as her illness progressed.
Then, in March 2020, the COVID-19 pandemic hit. Healthcare systems coped with the worst by shuttering out all visitors and much outside communication. Pam’s regular in-person visits with Susan took on the character of the theatre of the absurd. Visits became what she and Susan called “the ALS charades”— Pam waiting outside, leaning against an often rain-soaked window while Susan strained to see her from inside, propped at an angle in her wheelchair to try to discern at a dim distance what Pam was communicating. In turn, Susan used a laser pointer attached to her glasses to point to letters on a laminated card, spelling out each word, letter by letter, for Pam. The process was agonizing for them both, with only the most modest rewards of understanding conveyed after all the effort. Through all this, neither friend lost her sense of humor. Until the very end, Susan was the friend who could make Pam laugh.
Through it all, Susan never stopped her effort at communicating, and Pam never stopped her effort to be Susan’s voice.
Her Voice Speaks Still
Next August, Pam plans to return to the same Alpine valley she and Susan first visited as high school students and then, forty years later, as reacquainted friends. She will spread some of Susan’s ashes and pay tribute to their friendship.
While Pam shares Susan’s story here to honor Susan, the profound point of friendship is that its story is always mutual. Susan’s story is about Pam as much as Pam’s story is about Susan. Susan relentlessly persevered through her devastating disease. And so did Pam. Susan never gave up her wish and right to be her whole self, in any and all circumstances, as much as she possibly could. Pam never gave up on ensuring that Susan could continue to be her whole self in any and all circumstances, as long as she possibly could. Susan maintained her desire to communicate what she thought, what she needed, and who she was. Pam did everything in her power to maintain those things for Susan. Susan kept her audacious sense of humor through the most trying of circumstances and never gave up her dignity or her humanity. Pam never gave up on working so that Susan could keep those powers, no matter what.
There are mutual benefits that last, too. In the role of “voice of Susan,” Pam got to know Susan’s friends and family in intimate ways that few friends could. In addition, mutual friends from the past have renewed their friendship with Pam as they connected with Susan during her illness. Close friends of Susan’s have now become close friends of Pam’s. In these ways of friendship, Susan lives on.
Pam particularly values a gift from Susan that only the special demands of their relationship could bestow. In taking on the responsibilities of Susan’s illness, Pam was called to stretch herself in uniquely difficult ways. Over the course of many months, Susan’s life, quite literally, depended on Pam, her resourcefulness, her resiliency, her devotion, and her never giving up. Pam never knew how strong she could be until she determined she had no choice but to be strong for Susan. This is a gift from Susan to Pam, which Pam will carry on for them both. This is the voice of friendship about the gift of friendship. It’s a gift of timeless love.
To learn more about Jennasis Speaks, visit our website and tune in to our weekly podcast where women share their empowering stories. For ALS resources, visit https://teamgleason.org/# and https://www.als.org/.
Jennasis Speaks is a platform that empowers women to safely share their stories, promoting healing and growth through the power of collective vulnerability and acceptance. Believing that “every woman has a story…and every story matters,” founder Jennifer Malcolm hosts a new guest each week to tell her story on the Jennasis Speaks podcast and invites listeners to connect and find their own paths to passion and purpose.
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