As I grieve the recent loss of my long-standing client Susan, I find myself smiling when I reflect on the immediate bond we forged by our shared experience as fellow MBA graduates of Simmons University School of Management. Although she graduated 11 years before me, we knew that Simmons women always support other Simmons women.
The Beginning
It was in a graduate school publication that Susan read about me and Healthassist. It prompted a phone call to learn more and then a request for assistance. She was guarded as she explained she was about to have a cataract repair on both eyes. Her mom, who was in her 80’s, was planning to stay with her after the surgeries, but Susan felt it was too much of a burden for her mom to accompany her on the days of the procedures.
During that initial time together, Susan revealed some of the challenges in her life following a diagnosis of Parkinson’s disease (PD) many years earlier. She relayed that the disease was progressing, but she was lucky, because she was a candidate for Deep Brain Stimulation (DBS) Surgery. What she really wanted from me was Project Management assistance to help her embark on this procedure.
Always Teaching
When Susan asked how much I knew about Parkinson’s disease, I had to admit I knew the basics but did not know much about the surgery she was considering. In true Susan style, her early career as a teacher came into full view as she explained that if I were willing, she would teach me not only about the disease and the surgery, but more importantly, how to LIVE WELL with Parkinson’s disease.
In fact, she became a more formal medical educator herself, when years later, one of her favorite neurologists asked her to meet with medical students to share her experiences with Parkinson’s disease. For several semesters, Susan offered students a unique perspective — from the patient’s point of view — teaching them invaluable lessons about empathy and care.
Her Living Environment
When I met Susan, she was living in a downtown Boston high rise but had decided to move back to a renovated and accessible small apartment on the first floor of her family home. Susan’s mom and brother lived upstairs and although she was determined not to be reliant on them, it made it easier for everyone to see each other regularly and pitch in when needed. Additionally, she felt she could work alongside her brother to support her mom as she aged.
Over the years, Susan lost her mom and then her brother. Once her brother passed, I often thought life might be easier if she moved to a more supportive living environment, such as an Assisted Living Residence. But I knew she would never leave Winthrop because of the love and support she felt from the community in which she grew up. I so enjoyed experiencing this when, on our way home from physician appointments, we’d stop at Winthrop Marketplace, pick up a prescription, or have lunch at her favorite Greek or Italian restaurants. In each place we entered, she would receive warm and heartfelt greetings. I’d observe individuals getting up to help her with a difficult door, offer to give her rides home, or ask if they could drop items off for her. It was at these moments that I completely understood why she wanted to not only live well with PD but why she wanted to do so in her hometown.
Susan explained that on occasion, her unconventional stride while walking along the beach just outside her home led strangers to think she was imbibing alcohol. Although it hurt her feelings, when she had the opportunity, she would gently and briefly explain she had PD and initiating movement was difficult for her. She encouraged others to be curious and not jump to conclusions. Again, she was always teaching and modeling graciousness.
Taking Good Care of Herself
Susan created a village around her. She welcomed excellent and proactive primary care and never missed a recommended vaccination or screening test. She received specialist care from numerous physicians, including a neurologist, neurosurgeon, endocrinologist, nephrologist, and finally, an orthopedic surgeon. Because Susan knew she was at high risk for falls, once she learned she had bone density issues, she persistently sought treatment for many years from an endocrinologist who became one of her favorites to visit every three months.
Susan considered herself very lucky. Except for the PD, she was healthy overall. She embraced the fact that to live well with it, she had to minimize her risks and take extra special care of herself.
Relationship Building
I was continually impressed with Susan’s ability to form meaningful connections with her healthcare team, something which is a major point of emphasis with our clients. She asked me to accompany her to Deep Brain Stimulation support groups, not just to learn about DBS, but to build bonds with the physicians, nurses, physical therapists, and most importantly, other patients navigating the same journey.
Over the years, we met a minimum of twenty-five different physicians. With each one, Susan created a bond, making it a point to remember their names, ask about their families, and bring up previous discussions. She approached each doctor with the same care and attention she would a long-time friend. I loved watching her do her “relationship magic,” something she never failed to pursue, even in her final days when she summoned the energy to ask new caregivers about their lives.
Knowing When Additional Help Is Needed
Susan was fiercely independent and determined to live on her own. So it took some convincing for her to accept a small amount of help with household tasks, errands, cooking, and bill paying. Once she acknowledged this was not a sign of weakness but, rather, support for her goal of independent living, she readily accepted the assistance. Again, in her elegant style, she developed deep and meaningful relationships with her peer companions (she attended family Thanksgiving at one of her companion’s homes three years in a row). I am eternally grateful for the professional support they provided as well as the personal love they demonstrated.
Courage and Fortitude
Susan’s goal was clear: to live independently, healthily, and for as long as possible with Parkinson’s disease. She was unwavering in her determination to not let the disease define her. So, in the past year, when her hip pain from osteoarthritis became so severe that it threatened her mobility and independence, Susan demonstrated remarkable bravery by deciding to undergo a hip replacement. It was just another testament to her resilience, to her desire to remain in control of her life, and to her unwavering will to live on her terms.
An Unforeseen Complication
We knew Susan’s surgery was not going to be easy, so we prepared for months, making sure we left no stone unturned. However, we were not able to control the flu she contracted during short term rehabilitation in a skilled nursing facility. As her respiratory status worsened, she was re-hospitalized. Although she fought hard and was making good progress, a complication occurred that eventually led to her passing. I am forever grateful that I had the privilege of being with her, working alongside an amazing ICU team, to ease her suffering.
Summary
Susan found joy in unexpected places and shared it with others in quiet ways. It was one of the qualities that made her so special and that made me a better person for having known her.
She showed me that life, no matter the obstacles, can be lived with grace and dignity. She taught me to build relationships, to be grateful for what we have, and to embrace every opportunity to learn. I am so fortunate to have had Susan in my life. Her lessons will live on in me forever.