BOBW Featuring Alyce!
Those of you who have been reading for a significant chunk of time may feel like you know some of the commenters. I definitely do! Alyce has shared her wise insights over the years and I was thrilled when she agreed to be a guest on BOBW!
Alyce is an attorney with a large amount of professional responsibility – she manages a team of nine attorneys that provide legal advice to both 30+ permanently authorized federal programs and a large number of of temporary programs, such as pandemic relief programs. She is also married to an attorney and has a gorgeous child named Simone with a rare form of epilepsy called Dravet Syndrome.
She shared a lot of actionable and practical advice in the episode, as she has navigated so much over the past few years. She wanted to add the following:
One very important qualifier – when you asked about support, I totally just focused on paid support, which totally belies the unpaid support we’ve received from my in-laws, and my mother in law in particular. In addition to taking care of her when we go out of town, they come and watch Simone every weekend, giving us a much needed breaks. Since quitting her teaching job after the end of the 2021 school year, my mother in law has almost always been our backup care when daycare is closed. And, as I mentioned, she takes Simone to her private therapy appointments three times a week.
The other very important support we’ve had has been the therapists through the county provided Infants and Toddlers program, which we first heard about from our pediatrician. It’s a federally mandated early intervention program that’s available across the country. It’s a free resource run through the public school system if your kid qualifies – and a ton of issues will qualify. We’ve had a team of three therapists (in addition to her private therapists) who have worked with us and Simone 2-4x/month since she was about 7 or 8 months old. They have been amazing for troubleshooting issues that have come up over the last three years – sleep issues, sensory issues, behavioral issues, literally everything. They’re basically been deeply qualified parenting coaches who know a tremendous amount about supporting kids in general, and also supporting kids with disabilities and special needs, and they share their knowledge freely. They helped us develop a plan of attack for every issue, or every transition, and because they see her regularly, they able to see very clearly where our daughter is in terms of her growth and development, and tell us what was out there that could help her – like orthotics, shoes that fit over orthotics, child sized strollers, walkers, etc – so that we knew what to request from our insurance company. In working with them, it’s clear that, although we feel like Simone’s issues are totally unusual, they’re actually not novel. I’m not reinventing the wheel here, and I don’t need to become the expert to get Simone the support she needs. I just have to find the experts. It has saved us so much time and mental energy.
I just wanted to be sure I clarified this, because I don’t want to leave people with the impression that I’ve done as much as I have with just three hours of support from a college babysitter a week and a housecleaner every two weeks. There’s definitely a reason why I would tell people to seriously consider significant life changes like switching jobs, switching bosses, switching insurance providers, moving closer to support networks, etc if they find themselves in a situation like we are with a kid with significant lifelong disabilities – especially if they want to continue to work (as I do, but also as I need to, since I’m the primary breadwinner in my family).Alyce
Anyway, I just wanted to feature the above comments + interview here as I know many of you might not be regular BOBW listeners but interested in hearing Alyce’s voice and thoughts. Alyce, thank you again for a such a great conversation!
Links to listen: Spotify / PlayerFM or wherever you get your podcasts!
The Deep Life
I was listening to Cal Newport (as one does) and lately he has done a lot of discussion of The Deep Life, which I find an interesting concept. I will definitely be reading the book he is writing on the topic.
He provides a lot of Deep Life examples, and they are typically writers who live in cabins or scientists winning prestigious awards, but also finding time to cultivate an enormous bonsai garden (or something to that effect). In this earlier post exploring the idea, he introduces 4 elements of The Deep Life, shown below:
- community (family, friends, etc.),
- craft (work and quality leisure),
- constitution (health), and
- contemplation (matters of the soul).
You know what? I feel confident that I am living the deep life, right here right now. I am not winning awards. I am not solving theorems. But I am living intentionally and enjoying my time here on this planet and generally putting my heart into my endeavors.
My “community” bucket includes my family and friends, and also includes my patients and colleagues and trainees and blog/podcast friends and more peripheral relationships.
My “craft” bucket is this my clinical + other work, plus blog and my podcasts, and to some extent some of the creative ways I try to make planning fun + useful.
My “constitution” bucket is my workouts (strength, running) and general desire to care for my body well so I can hopefully life a long and active life.
My “contemplation” bucket is addressed by my reading habits, meditation, and probably ALSO this blog to some extent (double duty!).
I think sometimes when I’m listening I am unsure if my kind of life is what he is referring to, but from my standpoint I think I’m checking the boxes. Maybe I can be his first ‘regular person’ guest 🙂
(PS: in reading the above what appears to be missing is some reference to deep connections with others, unless that is included in what he means by ‘community’. Because that strikes me as a very important element of living deeply!)
((PPS – added after reflecting on my run – the above is not to imply that I am special in any way for having something to put in these boxes. I am sure many if not most of you reading this could say the same!))
(((PPPS – upon hearing the rest of his most recent ep #204, there is more to his current definition, some of which I am not sure I love – particularly the part about doing something radical being a requirement. If we are ALL off doing radical things . . . who is left to do the regular things? Just an initial thought. Need to reflect more!)))
I really enjoyed Alyce’s interview. I am so impressed with her positivity in the face of such a tough situation. As the mother of comparatively neurotypical children, I feel like I learned so much from what she shared.
And thank you Sarah, for sharing your thoughts on the deep life. I often feel as a physician in private practice that I am not having the impact I should–no awards or great breakthroughs here. Thank you for the reminder that a deep full life does not look just one way. Lots of us are engaged in meaningful lives that don’t garner awards and recognition.
This summer I was (probably re-) introduced to the Benedictine way of life which prioritizes prayer, rest, relaxation, and work. Thinking of my days this way and making sure all are getting attention has helped a lot. This approach looks similar and I agree it leads to a life that feels meaningful!
I posted on Laura’s blog as well, but I wanted to say again how much I appreciated Alyce’s interview. Although Simone’s needs are quite different from my sons’s, so much of what she said resonated with me. I also appreciate her follow-up comment about many great services being available but it being a lot of work to find and negotiate them. So much of what I’ve learned about navigating the world of having a special needs child has come from other parents who are willing to share their experiences and recommendations. No one is born knowing how to start the IEP process or fill out the paperwork private school tuition waiver for disabled children, or disclose a significant diagnosis to a child, or any of the other difficult things we have to do. People like her who are willing to be open and honest – and graceful – about something that can feel so personal and painful – but actually affects many of us – really do make a difference. Best wishes to Alyce and her family.
That’s so kind of you say say, Chelsea. You are so right that the best resources are other parents willing to share info! I find the special needs community to really be an amazing support network. Regardless of your kid’s challenges, they bring you into the fold and hug you tight. I love being part of this niche community.
Oh my goodness, I wish he’d have normal people on his podcast – his stories are all about men with unrealistic amounts of autonomy and flexibility. One of the things I like about BOBW is you’ve kept guests on the normal side of the spectrum, with fewer influencers with a lifestyle to shill. I liked Deep Work, as an academic it was very relevant to me in terms of the type of work I do, but I find him a bit insufferable in tone? Like he spends all his time writing about social media, but doesn’t actually use it, and I’d rather hear critical perspectives from someone who has personally experienced challenges around social media and distraction, than someone who seems genetically immune from those distractions.
I couldn’t agree more! I actually had to stop listening to his podcast because despite often discussing very interesting concepts, the tone really rubs me up the wrong way.
Same! It’s too bad as he does have some valuable ideas.
From an outsider’s perspective I wanted to say how I feel like you managed your last call week really well/with a lot of equanimity and think it’s great you are appreciating how you ARE living the deep life! I think it’s awesome that you both have things to put in the buckets and are recognizing it.
Now that I’m on a roll, lol, I wanted to comment about the “deep life” stuff. I also push back on the idea that a “deep” life has to be radical. Also, “radical” seems very much in the eye of the beholder. For us, a radical deep life decision was for my husband to *not* take a tech job in the Bay Area (which would have meant much more $) or push for a position at an R1 university (which would have meant much more prestige) after he graduated. Instead he found a job doing what he loves (teaching) at a SLAC in suburban Orlando where we live in a terrific neighborhood near both sets of our parents. But – on the surface – living in suburban Orlando probably sounds like exactly the opposite of a radical life. It’s definitely not Boulder, CO!
I wonder if it’s that Cal’s advice is more geared toward 20-somethings, but I’m also not really into the idea of having to revisit and re-tweak all of these categories all of the time. I mean, I like running. I like training for races. But really developing strength and speed and endurance takes years. If I were switching up and revamping my fitness bucket every couple of months, I wouldn’t see the gains I’ve made by sticking to one thing for a long time. Also, I feel comfortable with my level of community. I help with Sunday School and coach my son’s track team during the year (mainly because his special needs mean that a parent really needs to be there with him) and I will buy anything for the elementary school. I don’t want to be in charge of anything at the elementary school, but I will add granola bars for the teacher’s break room to the grocery list any time they are out :). It would stress me out if I had to reconsider that all the time.
all of the above sound deep to me!!!!
@ Chelsea Yes I think there are SO MANY opportunities to give of your time and money. In recent years I have really decided to focus my time and charitable giving in just a few specific directions. I am part of the ley leadership of my church (essentially the board of directors for the parish) and I do not volunteer for ANYTHING else–no school fundraisers or PTA stuff. We attend events etc, but no other volunteer hours. I will rethink this when my vestry term is up and not before. It’s exhausting to rethink these types of things all the time!
I have to stick up for Cal here. 🙂 I don’t think he says your LIFE has to be radical, he says it has to be in radical ALIGNMENT with your values. So, Chelsea, the example you gave above about your husband’s job is precisely that, in my opinion.
Ahh, but all of the examples he gives include something drastic and I think he actually mentioned a radical lifestyle shift in this week’s episode!
Haha, maybe it’s to throw us off. I say it’s open to interpretation! 🙂
It sounds like Cal needs to interview from “typical/normal” people. Admittedly, I don’t listen to his podcast and haven’t read his books. I should listen to his podcast to get an informed view on what he is saying, but some of what I’ve heard 2nd hand rubs me the wrong. Like saying doing something radical is essential. Honestly, I’m too tired to do something “radical.” I’m keeping a lot of balls in the air and can’t and won’t ask more of myself! I would think many feel similar to you – you can check all of those boxes and have a happy, healthy, fulfilling life. But you don’t need to strive to win a Nobel Peace Prize, etc.
My favorite BOBW episodes are interviews with real-world people who aren’t influencer/selling something/etc. There is a place for that kind of content and I’ve enjoyed hearing from some of the experts, but the real-world/non-influencer guests are relatable and I learn a lot from them. I loved your interview with Alyce! I like that she has strategically used PTO to give herself a break. I had talked about strategically using PTO to get more time with my son when I first returned to work, but now I need to start using PTO for myself. I am so rarely alone in our house when I’m not working and I need more of that right now!
I have read Cal. Not all of his stuff is bad. and I take what I can from him. Still, he is absolutely somebody who should interview more normal people- and more women. I’d really love to hear from his wife.
I’m sure his wife is doing a lot of the non-deep work so he can do the deep work, and a lot of what productivity dudes consider non-deep work is actually super important, and it has to be done by *somebody.* The secret is “have a wife and/or an assistant* and I wish that they’d either be clearer about that. Or maybe they legit do not understand how much invisible labor goes into everything around them.
I love your blog- you’re a high achieving person with a demanding job- and you pull back the curtain on how you do that. You have help- and that still takes work from you- arranging extra time with the nanny, delivery of food, etc for call weeks. You care clear about all the HELP you have- and you’re still stressed out sometimes because managing and arranging all that help is *still labor*- you still have to keep all that in your mind! I imagine Cal Newport does not have all the “arrange things” browser tabs open in his mind because he does not consider that deep work, but without those things, none of his “deep work” would get done.
I 100% agree with you, PCN. Cal Newport occassionally says something I find very valuable, but so much of what he advises is divoced from many people’s realities. In my opinion, it totally undermines the credibility of his ideas. If they only work under perfect conditions that are not widely replicated in real world situations, how valid are they as universal ideas? I think Sarah is more right than Newport on this – the point of applying some variation of his principles isn’t to have external validation of your radical life choices. It’s to help you develop a deeply and personally meaningful life.
Just wanted to say how much I loved your interview with Alyce — I think this was my favorite episode yet of BOBW. As a pediatrician I really appreciated her perspective on navigating so many sub-specialty appointments and also appreciate the information above. Thank you all and thank you Alyce for sharing your wisdom and grace.
I am truly grateful for Alyce sharing so much!!!
I appreciate that you want to hear about patients experiences. I just want to be clear that we’ve had it extraordinarily easy because of Kaiser. Navigating many specialists, coordinating care, dealing with insurance is a huge burden on many families like mine. As a parent, I worry at times that the quality of the care my daughter will receive could vary based on how competent I appear to care providers, especially as a black woman. I always dress up for appointments, and I always bring the binder we’ve assembled around our daughter’s condition, not because it’s really been needed in appointments, but because it offers a clear signal that we are organized, competent and with it. But I really worry for the families, especially lower income families, families of color, or immigrant families who I think have so many more obstacles to getting care. I guess what I’m saying is that my experience as a patient is deeply privileged, and my story may offer a rosy view of what patients are experiencing. As a provider, I’m sure you’ve seen a lot of it yourself directly, so I’m probably talking to the choir, but I just wanted to put this very big caveat on my experience out there to you as a provider.
Alyce — thank you for writing back and for sharing this. I am a pediatrician in a largely systemically-underserved community and most of my patients are publicly insured — the challenges to my patients and their families are indeed enormous, ranging from language and cultural barriers, systemic racism and underinvestment in the social safety net, a broken system in which coordination of care is sometimes entirely absent, to lack of mental health support for families and patients. While it makes me profoundly sad that you need to dress up for visits and take other actions to appear competent, I am not surprised. I am a white woman. While I’d like to think that I am aware of my implicit biases, I know I have many and I am increasingly aware of the many blindspots I have around how my patients and their families navigate through the world. Above all, I want to say thank you again for sharing and for calling all of this out — the privilege and also the ways in which you are forced to navigate a system that is deeply flawed and biased.
Long time reader here, first time commenter. (I’m an academic mother to two kids, 4 & 9)
Echoing what others have said, this was a fantastic interview on so many levels. What I appreciated about Alyce (in addition to her awesome attitude) was her discussion of how broader social structures have supported her family. So often this piece is left out of conversations of how parents balance work and life in the US. As a woman of color, I am also glad to see your podcast feature more diverse voices. Thanks for this fabulous interview!
I’m so glad you enjoyed the conversation! There’s a lot of room for improvement when it comes to supporting people with disabilities in the US, but we have found that there are so many people out there working diligently to help out. It reminds me of the Mr. Roger’s quote about keeping an eye out for the helpers. Okay, I’m butchering the quote, but the point is that no matter how dire the situation is, the helpers are out there.
I fully agree with you that we are already living our definition of deep/fulfilling life! findings a good balance of things that fuel and nourish us physically and mentally is what makes is a good life, deep or otherwise.
Part of why I did pediatric anesthesia was because I find people like Alyce and her daughter inspirational. Thank you for having her as a guest.
When our daughter had her first seizure, it was actually a series of many seizures over four days with daily trips to the ER. To be frank, one of the most distressing/anxiety inducing parts of her care was handing our little baby over to the pediatric anesthesiologist to take her out of our sight for sedation and an MRI. Fortunately, our anesthesiologist was truly wonderful and his bedside manner went a long way towards alleviating my anxiety. Your work is so important, and I truly appreciate it.
This was a particularly great interview Sarah, I thought your questions were really thoughtful.
re: Cal Newport. I’ve been listening to the podcast off and on (mostly only segments the segments that interest me, not whole episodes) and there’s one in which he explains the difference (to him) between the “good life” and the “deep life.” I’m not sure the distinction matters (to me) but to him it does, at least as he’s refining the idea for his book. I found the book Deep Work really valuable, and also A World Without Email. The podcast is definitely dude heavy.
I heard that one and did like that he made the distinction, but I felt it he unfairly attaches too much value to what he considers deep.
Yeah….but also, does it matter? As you outline your own life above, it seems like a really great one–and meaningful–whether or not CN would call it “deep.” Like you (I think!), I have no real interest in doing something that HE might consider radical (“deep”) but that doesn’t make my life any less valuable. I wonder if there’s something about that word “deep” that folks are finding somehow defensive/triggering (thinking of comments here over the last year). That word is serving as a certain kind of branding for him, and it seems to work differently in different contexts (focused knowledge work, deliberate living, etc). Thanks for helping me explore this.
Good points all around! Clearly I find his ideas valuable (plus or minus the branding) because I keep listening!
Loved this ep! Great guest!
You know what I’d like to hear? Sarah interviewing Cal’s wife. I am very suspicious of any cis white dude’s theories about defining the great life and how to achieve it, since those tend to underplay/ignore all the domestic and other supports that make achieving those lofty goals possible.