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Not alone together

By Caregiver, Clinician, Family man
I’ve officiated at about 20 weddings over the past 35 years – the most recent – last weekend.  Being a minister is like being a nurse. It’s a gift to have moments of intimacy with people at crucial moments in their lives – glimpses of the fiber of relationships between loved ones and with their family members. The fiber can be tough and sinewy, new and delicate, or anything in between. As a student of relationships, I often reflect on this x-ray of human connections.  Can I read anything about durability or the capacity to face inevitable uncertainty or tragedy? I look for respect, listening, appreciation, learning, humor, affection. I so appreciate people who speak well of their partners. They are not alone together.  My 39th anniversary just passed. Phew.  We knew so little, we were so young. Who could have predicted we could make it 39 years? We certainly needed and sought help. 

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Belonging to your health team

By Advocate, Caregiver, Clinician, Consumer, ePatient
Belonging to your health team. Seems oxymoronic. Of course you belong to your health team. There is no health team without you. Yet sometimes people feel out of control, not accepted by their team. Maybe it’s because it’s not their team. Professionals and caregivers sometimes act as if or really feel that they are the team, separate from the people they serve. Today I received an e-mail report from a friend describing the meetings of the team caring for her husband with ALS (Lou Gehrig’s disease). The hope, the optimism, the details of how to manage, the welcoming, warmed my heart. The key is the welcoming across a threshold. Before the professionals weren’t part of their team. After they were. Just like that. Same day, I received an email describing the separation, frustration, lack of communication, of a friend caring for her husband who had surgery. Although the outcome was good – successful surgery – she seemed glad to be away from those professionals. They were never part of the team. How do we as ePatients welcome professionals onto our team?  How do professionals acknowledge that they have joined ePatients’ teams?

Peace with Aloneness

By Caregiver, Clinician, Consumer, ePatient, Family man
All humans have at least two things in common, they experience tragedy and aloneness. Aloneness features prominently in the health journey. We fortunate ones have supportive, often present health teams. Still it’s our journey to travel – often alone – as an ePatient, caregiver, or professional.  What is aloneness? This past week  I’ve asked many.  Some refer to loneliness, some to being alone. Loneliness is being apart, excluded or by choice. Loneliness feels like less – less than wanted or expected or experienced – the down next to the up. Less fun, less love, less power, less inclusion, less function, less help, less future, less control. Aloneness is not with others. People mostly speak of aloneness as a respite – relief from humdrum, pressure, worry, relationships, routine.

Sensitivity by other members of the health team to loneliness or aloneness challenges. How do we listen for loneliness or aloneness in others? Either its worn on the sleeve or its buried. If we’re empathetic enough to see it, how do we react? Respect it, pull or push, silent presence, distract, hug? The hardest challenge as a member of health teams – distinguishing between aloneness and loneliness and responding. For myself, I appreciate those who notice something’s off, are present, open a door, stand at the threshold, and don’t expect me to walk through it. I relish my aloneness from time to time. Peace with loneliness and aloneness is a magic lever of health.

Crossing Thresholds

By Caregiver, Consumer, ePatient
We cross many thresholds in our health journeys: before the diagnosis / after the diagnosis; outside the office / inside the office; before the pain / after the pain; having enough money / having too little money; before being cared by xxx / being cared by xxx; in control / less control; before taking the drug / taking the drug; before surgery / after surgery; walking fine / problem walking; living here / living there, etc. etc. Thresholds of sensations, function, location, relationships, power, information. Disorienting and bewildering – at least unsettling, sometimes devastating. And that ‘s just for us e-patients. What about our family, caregivers, and the professionals in  and associated with our team? A veritable ripple of thresholds. Read More

A new threshold – laid off

By Caregiver, Consumer, ePatient, Leader

As you were recently informed, due to the need to reduce operating costs, the Hospital is required to eliminate positions. Unfortunately, your position is one of those affected by this difficult decision.

A definite threshold in a health journey. Going through the stages of grief exiting one space and excited by new prospects as I enter the next. This is where some earlier posts on my blog come in: ResiliencySuperpowersRest, Improvisation.
What have I learned these past few weeks about the industry? Frantic rush to merge, expand, and cut expenses – dynamic tension between these simultaneous imperatives. A few organizations are well poised to consider, now what – many are not. The challenges of creating systemness and alignment from diverse cultures and entities, always endemic in health care, are now more pressing. Rapid, intense change causes teams within organizations to constrict, contract, protect. Leaders can leverage this stressful opportunity to create alignment by focusing on the patient, providers, and staff experience. Who can disagree with this beacon? Focusing on patient experience across the continuum of care is intrinsically rewarding – spiritually healing – and makes business sense because positive experience prevents leakage and increases loyalty. Clinicians are critical – they understand healing. Leaders need their help applying their craft to organizational health. Their jobs are harder, they need superpowers more than ever. They know where the system is weak and wasteful, just look at their workarounds – pearls  for change. Patients want their journey to be simpler and kinder – it’s far cheaper and more effective to anticipate their needs rather react to their dissatisfaction. Everywhere we find relationships requiring information and communication – patients, caregivers, providers, staff, leaders. Automate that sharing of information – bidirectional where possible.
I need to rest and heal to prepare for the intensely exciting new vistas ahead. I have worked my whole career to be ready for this moment. Be still my heart.


By Caregiver, Clinician, Consumer, ePatient
We continuously cross thresholds in our journey to best health. A threshold is a beginning, a change – before you weren’t, now you are. You cross a threshold when entering a building, a room, a relationship, an experience. Cross a threshold as you park your car, enter a clinic, go for an MRI. Cross a threshold when your doctor or nurse enters the room or responds to your email, when you call your insurance company, when someone asks, How are you? Cross a threshold as you feel a lump, hear a diagnosis, throw up, panic, feel pain, fall. Before you didn’t, now you do.These thresholds upset our sense of balance, our inertia. The manifestation of imbalance can be spiritual, mental, and/or physical. Why me? Hopelessness, annoyance,frustration, fatigue The sense of imbalance when crossing a threshold can require or suck energy, depending on the moment and perspective.

A pivotal moment for me as a nurse was discovering the opportunities I had to experience some of these threshold crossings, moments of imbalance, with others. Having a companion or a guide at these moments is huge. A smile, a touch, information can change the trajectory of that crossing, speed the regaining of balance, add energy, provide relief, increase hope. My mission became: to increase the sense of balance patients, caregivers, and clinicians feel as they work together towards best health.

Threshold crossings occur around us constantly. Sometimes we notice them. How can we increase our personal and organizational capacity to be a guide or companion?