How to Be A ‘Point of Light’ for Someone Who Is Critically Ill
“26 Points of Light:” How I Shined My Light
When someone you know is diagnosed with a critical illness, it can be challenging to know how best to help. Human nature wires us to want to show we care, to show up, but how? Do we mail them a card or make dinner? Send my thoughts and prayers? Or stop by the house or give them space? Yes, it’s hard to know what to do, when to do it, and what is best for the family and the ill person.
Over the years, I’ve had the unfortunate privilege of helping with the care and support of family and friends diagnosed with critical and terminal illnesses. Experience has been a most wicked teacher, with lessons learned etched in my memories. Having the gift of being “the organizer” brings both blessings and burdens. However, the valuable knowledge gained through experience gave me the tools I needed to be a “point of light” for my incredible friend, Maureen (Mo) O’Brien, in her time of need.
Below is an excerpt from my chapter in Mo’s newly released book, “26 Points of Light: Illuminating One Cancer Survivor’s Journey from Diagnosis to Remission.
CHAPTER 14
“I don’t remember exactly when, where or how I found out about Mo’s illness. That part is but a blur for me. Shock does that to the body. Maybe it is reality’s way of providing a personal protective coating for the really bad news. The details of knowing are not of extreme significance to me, but I do realize it is important for families of those diagnosed with a life-threatening illness.
The chaos of the early stage of any serious diagnosis finds family and friends searching for the “why” and “how” as the first stage of grief invades - denial. For the patient and their family, the waiting game begins: getting in to see a doctor (or the next doctor), enduring the barrage of tests and interpreting results, and getting a treatment plan together. It all adds up to a whirlwind of stress and anxiety. For me, the early stages of Mo’s diagnosis felt like I was in the middle of a game of Twister with her family members waiting for my turn to spin.
Before I spin, let’s back up a bit. My side of Mo’s story rewinds to the 1990’s sometime when a friendship developed as our paths started crossing at church, our kids’ school, and in the community. I’m not sure if I met Maureen or “Oh Oh,” her clown persona first — they are both memorable. Our lives have been interweaved for decades, and she is one I had depended on in my life trials to be there for me when I needed it most. Once I heard “Stage 4 lymphoma,” it was unquestionably my turn to be there for her. In the fall of 2016, Mo had been complaining on and off about her shoulder. “Dr. Mo” self-diagnosed her pain as a rotator cuff tear without actually seeing an orthopedic doctor. I remember encouraging her to see a real doctor, but her response was classic, “I don’t have time to have rotator cuff surgery.”
If only it had been that.
After the holidays, it became increasingly evident something was wrong; her physical therapy wasn’t working, and her therapist encouraged her to go to the orthopedic doctor. Soon the story began to unfold. Immediate care was needed. And quickly. The diagnosis developed rapidly at this point. Time was the enemy, and every day without treatment was another 24 hours that allowed cancer to invade. By the time I was in the loop, Mo had been through a battery of tests, and she was having surgery to put a rod in her pelvis to stabilize it before it fractured from cancer now ravaging her body.
What? It was just supposed to be rotator cuff surgery. Yes, an “inconvenience.” I’d bring over some Popcorn Depot popcorn, we’d watch a few sappy movies, chat it up, and she’d be back to her “normal” self after a few weeks of physical therapy.
Nope.
Everything was happening so quickly, yet it seemed like I was watching the family play Twister in slow motion from the edge of the mat. Feelings that I shouldn’t intrude were soon overshadowed by my desire to grab the spinner. Pacing, I thought, “What would Mo do?” And the answer was simple — just show up. Hopping in the car, I wondered what I was doing, but felt compelled to be there for her, wherever “there” was at the time.
Arriving at the hospital post pelvis stabilization surgery, I lurked in the hallway peering in, not sure if I should enter her room or wait outside. It’s hard being just outside the family circle and not in the loop. I selfishly wanted to know first hand. My closest friend, who was “fine” last month, was now recovering from surgery, diagnosed with Stage 4 Non-Hodgkin’s Lymphoma. Unsure what to do next, I just wanted to be there for the family while things were unsettled and treatment options were still being discerned.
I remember talking with members of the family in the hallway while she slept. I didn’t go into the room. Maybe it was my way of keeping reality at bay. Quickly the gravity of her diagnosis and the fight she had ahead was all too real. I immediately recognized this unwelcome wave of grief and sorrow as it rippled through me. Briefly, my mind revisited the battle my sister-in-law, Nancy, had with Stage 4 lung cancer ten years prior and my stepmom Ruta’s recent ALS journey. This devastating feeling was all too familiar. I had way too much practice in this arena, and the reality of that made me sick. Deep breath…because both Nancy and Ruta didn’t survive. But this is Mo, I thought. And if anyone can defy the odds and beat this thing, it is Maureen Vernal O’Brien.
I allowed myself the pause, to be sad, to mourn the loss of normal for Mo, and to listen to the family to hear what they needed. It’s what I do — start with empathy by listening, gather facts, and help chart a course forward. It wasn’t long before the pain of realization was behind me, and I began weaving together a plan. I grabbed the Twister spinner and began calling out directions. That plan started with offering the family-specific help they needed to get organized and communicate with Mo’s community, eager for news.
BUILDING A COMMUNITY OF CARE
Instinctively I knew the O’Brien family needed help because this was not my first trip down Stage Four lane. In naming my role in Mo’s care, giving “it” a title seems unnecessary since I just did what needed to get done. While reflecting on my role in writing this chapter, I participated in “COVID” TV Mass from Holy Name Cathedral in Chicago with Cardinal Cupich on the third Sunday in Advent in 2020. During the Cardinal’s homily, he told a story referencing a word I was unfamiliar with — “shosben.” In Jewish culture, during the time of Christ, the best man was called a “friend of the bridegroom” and was in charge of everything. The shosben was the #1 guard and liaison between the bride and bridegroom before the wedding happened. John the Baptist referred to himself in this way related to Jesus. The Greeks called this role a “paranymph,” which can also refer to a “ceremonial assistant or coach in a ceremony.” That word was also not quite right, so I kept searching. Part of my role with Mo’s care was bringing people together and helping them see how they could best connect to her. My role was providing concrete ways for people who cared for Mo to contribute to her care. Because people need tangible ways to participate, invitations to something concrete they can and want to do are important.
Dan has referred to me as a “Project Manager (PM)” though that title seems a bit sterile for this role. Staying in the Twister game metaphor, “spinner” is the likely position. Better yet is point guard, the basketball position, or quarterback (QB) in football seems a better fit to imagine the role. As a former athlete, I most resonate with positions of team leadership: scanning the field or court, assessing the competitions and adjusting during the game, executing plays, and passing the ball to team members to run. Yes, QB seems most fitting, as it takes an entire team effort to win the game. Though the title is not essential, the work certainly is.
You’ll need someone in the QB role as soon as possible — somebody that is probably not a direct family member — perhaps an in-law or close friend is preferred. The QB with just a tad of distance from blood relatives can navigate with fewer emotions more effectively and manage (mostly) outside of family politics. I believe that the family should be physically present as much as possible, so this QB role shifts many burdens away from the family. The O’Brien’s didn’t know they needed a QB because this was their first time dealing with a life-threatening illness, but I knew where we needed to go and began writing the playbook.
When drafting your team, there are four areas of care needed. Let’s call them the “4 Quarters of Support.” Since Maureen is a HUGE Pittsburg Steelers fan, the thought of her care in football terms is most fitting. She would agree as long as I was waving a Steelers’ flag wearing a Pittsburg jersey. Lining up people in these positions and recognizing the roles people play while connecting and managing the workflow is the role of the QB. The earlier the QB can delegate tasks to responsible family members or friends, the more efficient and effective the care system works for everyone.”
Britta’s Playbook: 4 QUARTERS OF SUPPORT
- Establish and maintain 2-way communications channel/s;
2. Organize food;
3. Control visitors;
4. Coordinate care (in-home, outside of the home for the patient and other family members).
Are you interested in the details of my Playbook? Great! You’ll find them in “26 Points of Light”, as well as insights from other friends, family, caregivers, colleagues, and medical professionals. All proceeds from this book benefit cancer research and patient care. As Mo would say, “Let’s do some good in the world!” #26pointsoflight
