Chat with Sara Lorraine Snyder: ‘As a person living with a disability, we’re already used to the world being able to hurt us or bring us down, whether from other people judging or saying things or your body being funky and doing not behaving in an optimal way. Just knowing that now there’s something, especially for people like me living with lung conditions and whatnot that there’s something that can very well take us out if it so pleased.’
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
Welcome to the Health Hats podcast series about young adults transitioning from pediatric to adult medical care. In this series, I interview young adults with complex medical conditions, their parent or guardians, point-of-care clinicians caring for these young adults, and whoever else I find of interest in this fascinating, frustrating, heart-breaking, and inspiring world.
This second podcast of the series is with Sara Lorraine Snyder, a fine, eloquent, young woman who has lived her entire life with chronic medical issues. She’s learning to drive her own healthcare and manage the transition to adult medical care.
“If you were playing with the team for football or whatever and then they come you come in the next practice and half of your team is completely new people that you don’t even know and then you don’t know how to effectively work with that team so that in the end of the day you can win or like achieve, whatever you need to.” Sara Lorraine Snyder
Health Hats, The Blog is changing. I’m the same 2-legged white man of privilege, living in a food oasis, who can afford many hats, as I was a couple of months ago. But my advocacy, ministry, channel are changing. I fell into this podcasting fellowship and here I am a podcaster, too. I’m having a blast. Loving the sound medium. The blog has been a mouthpiece for me. I tested the limits of showing how full of myself I can be. And it allowed me to think out loud.
You are my loyal audience. I write and produce for you. I start with a germ that’s mine. A question, an idea, an initiative I want to think through. Then I go to it with you in mind. I ask myself, why should you care about whatever? It’s important to me, why do I think it should be important to you? As I write or produce, the germ sprouts, grows into something unexpected, almost all the time. I’m amazed.
The thing about blogging is that’s almost always one-way. I average 1.3 comments per blog post over 6+ years. I’m getting a bit tired of myself. There’s so much about which I know enough to be dangerous. Podcasting can be a two-way street. Me learning about what interests me. I also recognize that some people like to read, others like to listen, and still others like to watch. So, I’m trying to develop all three media: blog, podcast, YouTube videos.
I’m part of a podcasting fellowship: eight weeks of daily coursework with 300 other budding podcasters from all over the world. We created a supportive community during the course. Now that it’s over, over 100 of us are still engaging, sharing, cheerleading, learning together. A model virtual community (I smell another blog post). I’m a budding sound engineer, producer, and interviewer. I added transcripts for readers and deaf folk. Be still my beating heart. Already, I’ve had an ode to my boy, Mike Funk, met men in caregiving, channeled clowns in the doctors office, explored health equity. I’m working on a series about young adults transitioning from pediatric to adult medicine from the young adult and parent perspective, and conceiving a series about pain management.
But I never asked you if this change to blogging plus podcasting was OK with you, what you think of it, or for your constructive criticism. This is me asking you now.
- How do you like this transition and change I’m making?
- Do you listen to the podcast? Read the show notes?
- Do you still find the blog posts, show notes, written stuff valuable?
- What do you think about the topics, the guests, the music, the quality of sound, the noise?
- How about the length? It’s ranged from 20 to 68 minutes.
- I’m using my cousin’s Joey van Leeuwen’s music. Isn’t he great!?
I was going to send you a survey, but I’d rather just hear from you. I’m eager for observations, atta boys, I’m outta heres, creative ideas, topic ideas, interviewees?
Talk to me, please. Email me at firstname.lastname@example.org!
And thank you for your loyalty. Weekly for six years, OMG! We’ve been together a long time in blog years. Onward!
Success is feeling like I have too much to do two days a week, not enough to do two days a week and not thinking about it for the rest. Today is a too much day. I missed a scheduled call. I was writing this post and missed it!! Too funny. How do I manage when I actually do manage, you ask? Well, if my wife wants to do something with me, the answer is yes. Same with my kids and grandkids. Then my health routine – steps, stretching, strengthening, balance, and stress management. Playing my horn. Blogging weekly. Finally responding to requests from my network cronies, making money and advocacy. (Note: I am retired and my family is all independent and healthy). So really the slack for me is only in those last ones. And health is the blowing up wildcard. When health dips, my spiel is BS.
My latest struggle is saying no to pro bono work. So many intriguing opportunities. But time is precious. Keys to time management success are well-defined commitments, deliverables, and timeframes; calendar, and task lists; plus strong partners and collaborators. Strong partners and collaborators make the work fun and efficient. The fun stokes my fires. This week the Society for Participatory Medicine’s one-day conference stoked my fire. What stokes yours?
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.