I went to a meeting in Chinatown attended by parents with children on the autism spectrum going to Boston Public Schools. The attendees spoke Mandarin, Cantonese, Vietnamese, English, and Bureaucrat-ese. The parents helped each other advocate for services for their kids. Most only spoke one of those languages. After 2-3 minutes of speaking in one language, someone would raise their hand and there was cross-translation by the 2 or 3 people who spoke more than one language. This repeated for about an hour. I went home and my 7-year-old grandson tried to teach me to play Pokémon. I understood less than I did in Chinatown. Opa, you don’t understand this at all!! Read More
Spread the rest of Mom’s ashes with my Dad’s in Grosse Pointe, MI, joined by some dear friends. He was her soul mate. They died 43 years apart. As she would have said, it was a great party. too bad I couldn’t be there. My narrative about my mom is still quite fluid. Sometimes she’s amazing, loving, and engaged – all in. A pathologically optimistic survivor. Other times a reluctant, troubled, somewhat abusive mother. At the end she was a hoot — and the stories follow. Mostly, I think how alike we are. I’m loving, amazing, troubled, optimistic and a hoot. Narratives are coloring books with pages of the same outline, colored with different crayons, paints, markers, within the lines, outside the lines. I’m alternately relieved and uncomfortable with the narrative of troubled mother. Sort of like the narrative of me as disabled rather than healthier than I’ve ever been (except for the MS). Troubled and disabled are true. I just can’t live there for too long – 5 minutes as a time? I’m affected by other people’s narrative about me, especially negative ones. When I’m strong, my positive narrative trumps, when I’m weaker, the negative narratives wear me down. What narratives do you have about yourself and those in your world? How do they affect you and them? Narratives are certainly magic levers of best health. Oh, ma, the narratives of you are spiced with love. I miss them all.
I’m reading Scott Simon’s book, Unforgettable. A son, a mother, lessons of a lifetime. Beautifully written and so close to home. Scott Simon’s book resonates for me. It’s been four months since my mom died. Like Scott Simon, I, too, laid next to my mom in her bed telling stories. Before dying I was grossed out at the idea of laying in bed next to her. Now I treasure those moments. I feel her loss every day. Actually, it’s almost every day now, not every, every day. I resent that it’s not every day. Last November I was so upset that the 11th anniversary of my boy, Mike’s death passed without me remembering. I cherish the bittersweet sadness and the exquisitely tender spots of these memories. What have I become when I forget those who color my tapestry? Yet I am recovering. Very slowly regaining my strength and my center. The surrealness of loss and grief subsides inch by inch. Thank god. I couldn’t stay floating in that ever-deepening well of grief. Grief is again becoming a quirky, intriguing companion. Oh ma, where are you now? Do you have more stories for me? I have so many for you.
In January I wrote about the magic lever of organizational culture change (link). Today I’m preparing for a nursing leadership seminar about organizational culture and change for people who lead teams in much larger organizations. While I mostly want to hear from the participants – sharing experiences has much more value than anything I could share – I have the following pearls:
- Be the ideal – act as you expect others to act – the golden rule. Simple but tough. You have most control of this
- Hire for culture – You can train skills, but you can’t train for attitude. The best opportunity is at hiring.
- Leverage diversity -build different skills, ways of thinking (Myers-Briggs), and life experiences into your team.
- Experiment, learn with your teams – who knows what will work? Try stuff out. If it doesn’t work try something else
- Engage patients & caregivers – it’s the right thing to do, but it also changes the conversation dramatically
- Be transparent with information – Whether you have grade A or grade C data – share it. Let people comment, criticize, engage. Tell stories. Welcome scrutiny.
- Market the change – You can’t change everything or everyone, but you can change the people who matter (the link takes you to Seth Godin’s blog)
Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity covers stories of diverse caregiver experience; parents with exceptional children: children with deafness, dwarfism, Downs syndrome, autism, schizophrenia, or disability. Others are caring for children who are prodigies, transgender, conceived from rape, or committing crimes. It is a rich and exhausting tome (962 pages) — profoundly sad, exhilarating, and inspiring. Solomon interviews more than 300 families navigating a journey they didn’t choose, caring for their children, facing unexpected challenges. What can those of us committed to participatory medicine learn from their experience?
I’m on vacation with my family on Cape Cod, playing, eating, napping, and swimming. For best health we need rejuvenation. All components of individual health: spiritual, mental, and physical, depend on rest and relaxation. These days most healthcare organizations exist in a constant state of change. Change is seldom restful. I suspect organizations need rest and rejuvenation for their best health. The front line bears the brunt with interrupted work flow and changes in staffing and technology. Those touching our patients, clients, consumers feel less worn when they can depend on a steady routine of care and service. One of the hardest jobs of leadership is to care for the front line so they don’t burn out. We can set realistic timelines, support flexibility in hours to promote work/life balance, and make sure that changes at least make some of the work easier. We can promote positive storytelling that links staff back to the mission – why they do the work they do. What a dilemma: ever shifting environmental challenges necessitates the constant change that exhausts staff.
How does your organization rest and rejuvenate?