Sometimes I wish I had fallen in love with the flute. It would be easier than carrying the 40-pound sax up and downstairs. But it motivates me to keep doing my squats and increasing upper body strength as my lower body function diminishes. So, engaging with sax is perfect for me. Using different parts of my brain, learning every day, keeping me humble, and spiritually strong. Are you still playing the baritone sax? is a spot-on personal health outcome for me. So merry holidays everyone. I hope you have a musical season
I’m CEO of my health and I’m tired. I crave inspiration. I need a recharge. Several weeks ago, I recorded a conversation with Amy Faeskorn. I appreciate the Improv lesson Amy teaches here about the ‘yes and’ approach to best health, sprinkled with lessons from homeschooling. I feel better already.
What can the clowns can teach us as patients and caregivers about relaxing, reading the room, figuring out what you’re there to do, and not ending up more stressed than you went in. Maybe even having a bit of fun. In this podcast we will speak with Jason Stewart, a clown at Boston Children’s and listen in on a working session I led at the National Caregiving Conference in Chicago this past November, entitled, Reading the Room and Yourself. Lessons We Can Learn from the Clowns When We Go to the Doctor’s Office. Lessons from the clowns? Humor, humanity, failure. Reading the room. You are not alone. Read More
Yes, you concerned readers, I’m still playing my baritone saxophone. I’m taking lessons every two weeks via Skype. No travel time! I’ve upped my playing to 4-6 hours a week. More structured, too: scales, chords, simple rhythms. I still lose my place improvising, a lot. But I’m less in my head, thank you very much, what a relief. I’m paying more attention to my sound. I love the sound of the bottom (the bari sax is very low). I’ve changed my mouthpiece and reeds.
Devoting time to self-care – pretty fascinating in its own right. A stock question when I talk with people: what do you do for fun? Quite fascinating, try it. Knitting, dancing, jogging, singing, grandkids, soccer, hiking, needlepoint, painting, riding horses, writing, yoga, traveling. My ability to predict what a person does for fun is marginally better than my Lotto predictions. Some say I don’t have time for fun. Or, I’m ready to retire, don’t know what I’ll do. This makes me sad. Very sad. Read More
I’m ready to quit playing my horn. I can’t seem to bring what I’ve learned while playing at home (practicing) to rehearsals. I’m lost. I have fat fingers. I can’t find a 2 or 4 measure rhythmic pattern that works. I lose my place. I can’t seem to learn the language. I definitely I don’t have the muscle memory yet. It’s disheartening. I’m used to being good at what I do. I was a great bedside nurse. I was a really good boss. I’m a prolific and engaging writer. I’m sought after for my patient/caregiver activism. Music, not so much. I’m persistent, not talented. I’m humbled, playing music. Part of the secret sauce to managing my Multiple Sclerosis, is that I keep manageable stress to a minimum. Being a boss and employee was too stressful, so I stopped. I don’t have secrets. My close relationships are fresh and up-to-date. I adapt well to my slow reduction in function. Playing is stressing me out. Wait, I haven’t had a sax lesson in months. My teacher is very good. Positive and creative with my fluctuating abilities. Tells me to play less. I didn’t stay at the top of my game in my 40+ year career without coaching and mentoring. It wasn’t possible. I play for a reason. It’s one of two outcomes I track with my doctors (falling and playing the saxophone).
I’m not quitting. Thanks for listening.
Sometimes I feel like I’m part of someone else’s play. Just dropped in. I don’t know my lines, I don’t know the other characters. I think I’m in a drama, yet it feels like a farce. The stage is ever changing. Have you seen those round, rotating stages where the props keep changing? I think I’m playing myself, but I’m not quite sure. On top of it, I feel like crap, I’m exhausted, I’m cranky. I exit, stage right, left, whichever. What just happened? What do I do now? Oh yes, time to live life again.
When I worked at Boston Children’s Hospital, I took a class from the Big Apple Circus clowns. These are people who go from room to room visiting kids and their parents or go to scary procedures with them and help them feel better for a couple of minutes. The class was on reading the room. Sizing up the characters, the dynamic, the vibe in the room and then selecting a path forward. The kid is hurt, angry, and withdrawn. There’s tension between the hovering adults. What can you do? In seconds they insert themselves, do something odd or funny, draw out the child, and break the tension. Read More
At the #PCORI2017 Annual Meeting, Alan Alda showed us a simple mirror improv exercise (remember Groucho and Chico Marx in Duck Soup?). Alan first showed us him mirroring an audience member, then the audience member mirroring him, and finally, them mirroring each other at the same time. It was an exercise in empathy. Afterwards, someone at my table said,
From the outside looking in, it’s hard to understand. From the inside looking out, it’s hard to explain.
I first heard these words many years ago from a peer support professional describing the experience of depression and addiction. I understand this better now that I’m a person with a chronic illness. I work hard to explain what’s inside to my family and other members of my health team. Often I don’t know or I don’t have words. Mindful meditation helps tremendously – deciding to become friends with what ails me. It’s all me and I love me. I’m not sure if it helps me explain, but it helps me know myself. And for sure, it increases my empathy when I’m on the outside looking in. Thanks, Alan, for reminding us.
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Screenwriting seems like such an opportunity. The storyteller imagines a dilemma, a journey, a cast of characters, and a community. They picture what will happen and presto – a play, a movie, a video. Everyday people have a health dilemma, find themselves on a journey, with a cast of characters, in a community – real life scenarios of care. Read More
I spoke with a friend this week who felt like a stranger in a strange land. She’s recently moved to a community with almost no experience with Muslims, people from West Africa, or with those with chronic pain from a genetic disease. Every encounter presents challenges drawing on her charisma, empathy, dignity and ability to adapt and educate – sometimes during the crisis of severe pain. During my friend’s medical encounters she does not face a health literacy dilemma. She is usually more expert about her culture and her health challenges than the medical professionals she meets. She faces a life literacy dilemma. In my life as a patient and career as a clinician, I face an infinite variety of people, cultures, and situations different from my own or my comfort. I am often at a loss at how to engage this range of clinicians (as a patient) and people (as a clinician). How can we proactively prepare for so much unknown and unfamiliar? Read More
OMG, where’s my wife? I need to be rescued. I can’t do this. I can’t be here. My pounding heart, my rapid, shallow breathing. I can’t be here. Where’s my Ativan?! Have I gotten bad news, a diagnosis, felt a lump? Am I bleeding? Have I fallen? Am I a stranger in the strange land of the medical industrial complex?
No, I’m on a Blues Cruise. I want to play the blues with other amateurs. They are the amateurs that are not headliners. They have blues bands of their own and play regular gigs wherever they live. I am an old, baby amateur. I’m the only horn player at this session. I don’t know the tunes. I don’t know what key they’re playing in. I am SO way over my head. It could just as well be a gaggle of 8-year old’s trading Pokémon cards. Read More