15 Transcript: Lessons on Clarity & Creativity While Living with Chronic Disease
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J: You’re listening to the Vibrant Happy Women podcast, episode number 15.
S: When I've got this disease kind of hanging over my head in that way, it really, really makes you think twice about what matters, knowing in a… in a very real way that life is short.
Intro: Welcome to the Vibrant Happy Women podcast, stories of vibrant women living happy lives. And now, your host, Jen Riday.
J: On our last episode, I talked with Lori Jones since she shared her story of coping with her daughter's heart defect and choosing to write the book, ‘Riley's Heart Machine’, so she could share the story of loving what makes you special. If you haven't listened to that already, be sure to go back and give that a listen; it's a great episode. Today, I'll be talking with Sarah Dobson who lives with Camurati-Engelmann disease. This affects her skull and has caused Sarah to need 5 brain surgeries. So Sarah struggles with this difficulty, yet she is thriving because she has chosen to be vulnerable and allow her friends to help her. She loves to be creative and she's created a non-profit so she can give back. Sarah has quite the story and she really lives a vibrant and happy life, so we'll go ahead and get started.
I am thrilled to introduce my guest today, Sarah Dobson. Sarah is an editor and grant writer based in Vancouver, British Columbia. She helps people write clearly and strategically to get grant funding and to get published. She's also the co-founder of the nonprofit, Basics for Health Society, which connects people living in poverty to the social resources they need to be healthy. She's an avid reader, a cook, and a lover of the outdoors. Welcome, Sarah.
S: Hi, Jen.
J: So glad you could be here.
S: Thanks for having me.
J: Yeah, so we'd love to have our guests start out with a favorite quote or a personal motto, do you have one you would like to share with us?
S: I do. There's… there's 2 that have been on my mind a lot lately. The first one is, “Create before you consume,” so taking that time in the morning to… to be creative rather than… than be a consumer.
J: Mm.
S: And the other one that's sort of a guiding philosophy for me at the moment is, “What is the easy way to do this?”
J: Ooh, nice. So how would you apply those in your life? Can you give us some examples?
S: Well, my morning routine involves doing about 10 to 15 minutes of free writing; so just waking up and taking pen to paper and just kind of clearing out… clearing out the junk. It's based on Julia Cameron's morning pages from ‘The Artist's Way’, so that's… that's creating before I consume, first thing in the morning.
J: Mm.
S: And then my ‘What's the easy way to do this?’ philosophy has really come about pretty much since the beginning of 2016. I'm notoriously, I… I always seem to find the… the most difficult or challenging way to… to get something accomplished and I just thought, “Well, what if I… what if I tried to just make this a bit simpler for myself and what… what feels good what's… what's easy?” And so that's when I'm… when I'm making decisions, when I'm planning my day, that's… that's what I try to think about.
J: Hmm, that's smart. We all should try to do that a little more often.
[Laughter]
J: So I introduced you and I would like for you to take a minute and fill in any of the gaps that I didn't discuss in that bio.
S: Sure. So one of… one of the… the big parts of my life over the last 8 or 9 years is I was diagnosed with a chronic disease, a bone condition called Camurati-Engelmann; it's extremely rare. And over the last 8 or 9 years, I've had… I've had 4 or 5 brain surgeries, I've had a lot of visits to hospital, a lot of scans, a lot of tests, a lot of appointments with specialists. And it's… it's kind of always there in the background for me and it's had a huge impact on the way that I… the way that I live my life.
J: I would imagine, yes. So we often go right to the low point when we start our interviews, would you say that your low point relates to any of that?
S: Oh, it… yeah, it definitely does. The… the low point that that comes to mind for me is my 27th birthday, it was about 6 months after I'd had a life-threatening situation and my first couple of brain surgeries, and then I just had, I guess, the third one. I have a device in my… in my brain called a Ventriculoperitoneal shunt and I had that surgery in November and I was recovering. And at that time, I was living with a partner and because of my illness and a bunch of other, I guess, associated issues… we ended up… we ended up ending our relationship, and so he moved out of the apartment we were sharing in early January; so just a couple months after I'd had this… this surgery. And then my 27th birthday was in February, so just a couple months after… after he'd moved out. And so, at that point, you know, I… I didn't have a diagnosis for my illness, but I'd had a few really scary surgeries, I'd split up with my partner, I'd put my master's degree on hold, so I wasn't doing very well; I was… I was having a pretty rough time. But every time a friend of mine would check in on me and say, “Hey, Sarah, how are you doing?” I'd say, “Oh, I'm doing great! I'm… you know, I'm hanging in there, I'm okay,” and I would just really try to put on a happy face. And so, around my 27th birthday, I sent out a message to some friends saying, “Hey, you know, I'm just having a little get-together, why don't you pop by if you can?” and as the… the time that I had set for this gathering approached, it became pretty clear that actually, no one was going to come.
J: (Gasps) Oh!
S: And… yeah, yeah. And so when… when it became, you know, completely obvious, that made… it was going to be like a sushi party and I had made all of this tempura and I cut up, you know, carrots into these tiny little pieces and I… you know, I'd put a lot of prep work into… into having people over for this gathering and… and nobody showed up. And I remember sitting on my kitchen floor just sobbing, just…
J: Mm.
S: … just so sad and so alone. And it occurred to me that I had sort of brought this on myself.
J: Hmm.
S: Because I hadn't been honest with people about what I needed. I had been putting on this happy face for months when, quite plainly, things were not going very well. But I thought that, if I was honest with people about how I was doing that nobody would want to spend any time with me, that I would just be such a downer…
J: Mm.
S: …. that I would have nobody. But it turned out that faking it meant that I had nobody either.
J: Right.
S: So that was a really big wake-up call for me. And the thought of being honest with people about how scared I was, how depressed I was, the thought of that really terrified me, being… being honest about that with friends, but I… I knew that I had to. I knew that if I didn't start doing that, then I really was going to be alone and… and dealing with this illness by myself. So that was a real turning point for me and I started reaching out to people, I started be… being more honest with them about what was going on in my life, and it transformed everything for me.
J: Hmm. So you started being more vulnerable and authentic, and how did they react?
S: They were so wonderful. And, you know, that I… I think the… the big lesson to me was that they had really just been there all along and were kind of waiting for me to…
J: Oh.
S: …. be humble and to open up with them. And what I learned through experience was, the more vulnerable I was with them, the more likely they were to share their own struggles with me, which of course deepens a friendship…
J: Mm-hmm.
S: … and deepen the connection with someone. And, yeah, that was a lesson I learned kind of late, but I am so grateful that I learned it.
J: What did it look like going forward from that point?
S: Well, I… I got back on track with my master's degree and managed to complete it on time which, looking back, is…
J: Wow.
S: … sort of a miracle.
J: Yeah.
S: And then, the day after I handed in my dissertation, I… I flew to Vancouver and I've been here ever since. And it was one of the best decisions I've ever made for myself to just start over and connect with some people that I knew were out here and just really get involved in a really supportive community here in the city and take advantage of the outdoor space and the activities available to me here; it's been… been absolutely wonderful.
J: Hmm, that's great. So tell us more about… you mentioned 5 surgeries, but the low point happened after 3 surgeries what's… what's happened with your… your disease since that point?
S: Well, it's been… it's been stable ever since then. I was finally diagnosed in the… the summer of 2008, so about a year after I had my… my really scary situation.
J: Mm-hmm.
S: I was diagnosed with this extremely rare condition and I… I've been stable ever since. One of the things that happened when… when things were still sort of up in the air is, a lot of pressure had built up in my brain before they knew what was really going on and that actually caused some damage to my optic nerves. So I'm… I’m a bit blind in… in both of my eyes, more so in my left eye, but I have regular appointments with a bunch of specialists out here in Vancouver and… and my eyesight's been stable, my hearings been stable. The disease affects my skull and… and it sort of puts… puts pressure on my brain and… and so there's concern about vision and… and hearing and… and some other things, but… but all of that has been stable and I've been able to live a really active lifestyle, a really… a really full life with… with this really rare condition, which is… which is not the case for a lot of… I mean, there aren't a lot of people who have this disease, but some of the ones that I know really suffer with… with chronic pain every day, and I feel incredibly fortunate that… that, for me, that's not… that's not my experience.
J: So tell me the name of the disease again, Camurati…
S: Engelmann.
J: Engelmann. And, for our listeners, could you describe kind of briefly what that is?
S: Yeah. It's a… it's a disease that affects mostly the bones, so the… the long bones in your body, it makes them a lot denser than the normal bone from… from what I understand. But some people, like me, the condition affects their skull. And so my skull, turns out, is a lot thicker than most skull bones. And so it… it actually… it sort of squishes my brain and… and closes up some of the ventricles or the reservoirs that help circulate the spinal fluid.
J: Mm-hmm.
S: And that can lead to a lot of pressure being built up in the brain, which has some real danger for… for eyesight in particular.
J: Okay, okay.
S: Yeah.
J: And you mentioned being blind, can you still see a little bit or…?
S: Oh yeah. I… so the… the visual deficit that I have is… is sort of on the inside, kind of next to my nose…
J: Mm-hmm.
S: … for both of my eyes. And because of that, the deficit sort of cancels itself out, so I don't really notice it except, you know, when I'm driving at night or in really low light situations, it's a bit tricky for me, but in general, you know, I… my career involves a lot of reading and I'm still able to do that pretty normally, yeah.
J: Oh, thank goodness. (Laughs)
S: I really dodged a bullet.
J: Oh, good, good, good. As you look forward to the future with this disease, what do you think or feel as you think about that?
S: Well, a couple of things. The first is that, it has really… it has really taught me a lot and we've… we've talked about that a bit already. So it's something that will always be a part of my life as long as I'm alive and I just… I try to learn from it and I try to embrace it to the… to the extent that I can.
J: Mm-hmm.
S: And the other thing is, it's really helped me get clear on what matters to me in terms of how I want to spend my time, how I want to live my life. When… when I've got this disease kind of hanging over my head in that way, it really, really makes you think twice about what matters, knowing in a… in a very real way that life is short.
J: Mm-hmm.
S: And as morbid and as frightening as that can be sometimes, I actually… I actually think it's kind of a blessing…
J: Mm-hmm.
S: … to have such… such clarity around that.
J: Right. So what are those things that you feel are most important for you?
S: A sense of community.
J: Mm-hmm.
S: I have… I have a wonderful community here in Vancouver and it's… it's really an extended family for me and I rely on them a great deal for… for support and joy and entertainment and, you know, all of those things.
J: Mm-hmm.
S: And so that's a really big piece for me. I would say time in natures another really… a really big part of my life and something that I find really replenishing. And so having access to that here in Vancouver has… has been a real savior for me.
J: Mm-hmm. You're so lucky to live there by the way.
S: Oh yeah.
[Laughter]
S: Yeah, it's great, the sun is shining today; it's gorgeous.
J: Oh good, awesome. So looking at your life today, what does it mean for you to live a vibrant and happy life? You've kind of touched on it, but if there's anything more you want to add.
S: Sure. Well, in terms… in terms of the things that I need to feel vibrant and happy, there's… there's sort of, I guess, 3 kind of foundational components and that’s a lot of sleep, a lot of exercise, and good food. You know, once… once that foundation has been laid, everything else is easier just; it just… that's… that’s what kind of keeps the engine running.
J: Right.
S: And so, yeah, that allows, you know, that time… that time with community and time in nature and… and all of the other parts of my life to feel more comfortable and joyful, if I have that; that sort of trifecta.
J: Yeah, the trifecta of happiness.
[Laughter]
S: Yeah.
J: Well, so tell us more about the nonprofit you co-founded.
S: So Basics for Health Society was inspired by an organization that has been operating in the eastern United States for about 15 years now, it's called Health Leads USA. And this model is to connect people living with low incomes to social and community resources to… to keep them healthy. And it's… it's the types of things that don't normally get dealt with when you… when you go into a doctor's office and speak to your doctor. So transportation and housing and child care and income and employment and those… those types of issues that we know have such a huge impact on a person's health, but that just don't really get a lot of… a lot of time and attention. And so what… what we do is we recruit and train volunteers, a lot of them are university level students who… who aspire to go into the… the health or health helping professions, and we train them to be resource connectors. So most of the training that we do is around compassionate communication and strengths-based interviewing, so to really understand what's going on in someone's life in terms of, you know, asking them, “What's going on with you? What… what has worked for you and what hasn't? What's a priority for you right now and… and how can we help you achieve that?” So it's really trying to get to the bottom of what's going on with somebody and… and then our volunteers will… will go and do whatever research is required to… to find the resources that exist in that person's community and… and connect them to those resources.
J: Hmm, wow, that's impressive.
S: Yeah.
J: So how did you end up starting a non-profit? Where… how did you come up with such a great idea?
S: Well, so I mentioned that it was inspired by… by Health Leads. I actually read about it in the New York Times.
J: Hmm!
S: They had an article and I thought to myself, “Oh, I wonder where in Canada this is happening,” and I… I just… my background is in public and population health and so this really… this idea really resonated with me.
J: Mm-hmm.
S: And so I started looking around to see who was working on this and there… there wasn't really anybody working on it. But I was just so fired up by this idea that I… I knew I wanted to pursue it in in whatever way I could. So… so I just started trying to figure out how I could create it on my own. But it turned out that, here in Vancouver, a woman who's now a co-founder and a colleague of mine had been… had been hired by a local organization, they'd read this same New York Times article…
J: Oh.
S: … and had put some… some funding aside to… to develop a similar program. And so we ended up getting connected and working a bit together, but what… what ended up happening was a… the… the organization that had funded this program decided that it wasn't really part of their mandate anymore, and once the pilot funding ended, they… they shut down the program. But we were so passionate about this idea and this approach that… that we decided to… to incorporate and to create a non-profit society. So there are 3 of us, a family doctor, a social worker, and me with a public health background, and the 3 of us co-founded this organization and we've been operating for about just over 2 years. So we're still quite young, still… still getting our feet under us, but it's… it's been a real labor of love and a real joy to… to build this organization and to sort of figure it out as we go along.
J: Hmm, that's amazing. And if any of our listeners wanted to help support your organization, where could they go to learn more?
S: They could go to basicsforhealthsociety.ca.
J: Okay, great. We've reached my favorite part of the show where we get to find out a few of your favorite things.
S: Ah!
J: And so we'll get started there. Share a favorite personal habit or something in your routine each day that contributes to your success.
S: For me, it has really been the… the morning pages, you know, getting up first thing and… and writing 3 pages long hand; it's my way of meditating. I can't… I can't really sit still and so this is my way of creating a practice that really helps me understand what's going on inside, but through writing.
J: So for those who aren't familiar with morning pages, what should people write about when they do this?
S: It's really based on the… the principle of free writing, so it's kind of stream of consciousness. You can start with a prompt if you want to, but what I normally do is just sit down in front of my… my blank page and the… the first thought that comes up, I just… I just start there. And the idea is to write without stopping, without revising, without judging for 3… 3 pages.
J: Mm.
S: And that, at this point, for me, takes about 15 minutes in the morning, but it's a really great exercise. And I’ve… I've found that, once I get to about page 1 and a half or the bottom of page 2, that's when things start getting really interesting.
J: Oh.
S: And so it's… it's important to just push through. And, you know, sometimes when I'm writing, I’ll write, “I don't know what to say. I don't know what to say. I don't know what to say,” and then the next thing will come… will come bubbling up. So just keep going, keep writing, don't stop, and… and see what happens.
J: Nice, it’s…
S: Yeah.
J: … it's meditation plus personal therapy somehow. (Laughs)
S: Exactly, yeah.
J: That's great. What about a favorite easy meal that you like to eat regularly?
S: Easy meal, well I… so I love to cook and so most of my meals end up being quite complex, but when I am really short on time, a really simple meal that I like to do is an omelet with sautéed kale and… and garlic on the side. That's just dead simple, you can do it in less than 10 minutes and it's filling and it's healthy, and that's my go-to when I'm really busy.
J: That sounds really good, mm.
S: Mm-hmm.
J: I love kale. What's your current favorite household item?
S: I had a shelf made by a local carpenter here in Vancouver, done that a couple of times for a few pieces of furniture that I own. But I… you know, I'll go onto Craigslist and… and just look for who… you know, who's… who's building, who's making something. And so I have this beautiful shelving system that… that's sort of a room divider.
J: Oh, nice.
S: And I really… I really love it. It's… it's…. nobody else has… has anything like it, I really… I really like it.
J: Sarah, what's a favorite book you'd recommend to the Vibrant Happy Women community?
S: Well, I mean, since we've been talking a lot about morning pages, I'd… I’d recommend ‘The Artist’s Way’ by Julia Cameron, if your audience hasn't read that, or… or another one that touches on a similar concept is ‘Writing Down the Bones’ by Natalie Goldberg; both excellent books on… on this idea of… of writing as meditation.
J: So you write for grants, have you considered writing for another purpose?
S: Absolutely. Yeah, I do a bit of creative writing. At the moment, it's… it's just dabbling.
J: Mm-hmm.
S: But one of these days.
J: Yeah!
S: One day.
J: One of these days.
S: Yeah.
J: That’s great. What's a favorite item on your bucket list and why?
S: Oh, bucket list, you know, for me it's really anything in the outdoors, in the Pacific Northwest. There's just so much here to explore and I love anything, camping, hiking, kayaking, skiing, that's really how I enjoy spending my time these days, which, yeah, is pretty close to home, but… but there's just so much here.
J: What is the best advice you've ever received?
S: Best advice I've ever received is from a professor of mine at University and… and she said, “Do what seems right at the time.”
J: Hmm.
S: And that was for all of us who were really suffering from indecision or having trouble deciding where we wanted to… to go with our future and… and she just said, “Well, do what seems right at the time, you know, nothing is… nothing is ever permanent; or very rarely permanent.”
J: Hmm, that's good advice, kind of going with that intuition in the moment.
S: Yeah.
J: Okay. Looking back on your life so far, tell us about your happiest moment.
S: Oh, there have been so many. The one that… the one that really comes to mind is, a few years ago for Thanksgiving, I hosted about… this is Canadian Thanksgiving.
[Laughter]
S: I hosted 20… 20 or 22 people in my fairly small 1-bedroom apartment here in Vancouver and we… we had sort of a makeshift dinner, we put a bunch of long tables together and we all sat and just had a wonderful evening and enjoyed a meal together. And, yeah, that's just community and hosting and food, I mean, all of my favorite things all wrapped up in in a single evening, yeah.
J: That's so fun and it makes me want to come sit around the table. You said you loved cooking so I can just imagine. (Laughs)
S: Oh, I love it, yeah, yeah.
J: Again, our listeners can find links to everything we've been discussing today by going to jenriday.com/15, including the links to the 2 books that Sarah mentioned. And, Sarah, now, our final, but most important question, and I think you might have answered this a little bit; we’ll see if it varies this time. If you had to create a 3 to 5 formula of actions that maximize your happiness, what would that include?
S: Yeah, so that trifecta I talked about earlier, sleep, exercise, and good food…
J: Yeah.
S: … that is an absolute essential for… for basic functioning, for me, I would say. And then… and then the other 2 are… are time in nature and… and quality time in… in community.
J: Mm-hmm.
S: For me, that that tends to be 1-on-1 time with people, I get a lot out of having really intense 1-on-1 conversations, but it's also great to, you know, have these big long table dinners or go on some sort of adventure together. But, yeah, just… just time with… time with people who are important to me.
J: Hmm, that's great. As technology becomes such a dominant part of our culture these days, I think these 5 things you mentioned, sleep, exercise, good food, nature, and connection are falling by the wayside, so…
S: Yeah.
J: … I try hard to teach my kids the importance of these things.
S: Oh, good.
J: So you're doing a great job.
[Laughter]
S: Thank you.
J: Sarah, are there any other hobbies or interesting things you're doing these days?
S: So I do blog over at sarahdobson.ca, s a r a h d o b s o n.ca. And I… I talk about writing and productivity.
J: Hmm, okay. And do you help people with grant writing or… or…?
S: I do, absolutely, yeah, with… with grant writing and… and writing for publication. So if any of your listeners want to… to get in touch with me, my contact info is on my website.
J: Wow, that's a great… a great service; I think a lot of people need help with writing, that's great. Well, Sarah, I have loved listening to your journey and I'm so impressed with your positivity and your joy with your life and all the good things you're doing with your nonprofit. I wanted to give you the chance to give the Vibrant Happy Women community a parting challenge, something actionable that we can all work on to kind of be as happy as you are.
S: Okay. Well, one… one thing that has really helped me, especially recently, is… and… and this is my challenge to your listeners, is to listen to your instinct without judging it. And whether you call it your… your instinct, your gut, your heart, whatever it is, just listen to that without… without piling on, “Oh, that's ridiculous,” or, “I shouldn't feel that way,” or, “How could I possibly want that?” It'll really… well, it's really helped me get clear on what I want, if I can just listen to… to my gut without… without piling on any of that judgment. Part of that comes through, for me, the… the morning pages.
J: Mm-hmm.
S: And I would encourage any of your listeners who feel like that might be a good habit for them to develop. But just that very simple challenge of… of getting in tune and not judging.
J: Hmm, I love that; connecting with self. And then you… you said on the second page, usually 1 and a half pages into your morning pages or by page 2, that's when the magic happens.
S: Yeah, that's where… that's where it gets really juicy.
J: Where the instinct comes out?
S: Yeah, yeah.
J: Okay, okay, that sounds doable, I love that, I'm going to start (Laughs); thank you. So, thank you so much for being on the show, you've been amazing and inspiring. And, again, our listeners could find links to everything by going to jenriday.com/15. Thank you so much for being on the show today, Sarah.
S: Thank you, Jen, this has been great.
J: Take care.
That was a fun episode, huh? Sarah is doing some great things with their life, having fun with their friends, having these big community dinners, creating a nonprofit, helping people learn how to write, and it inspired me to want to do the morning pages; how about you? Remember, it's on page 1 and a half of the 3 morning pages where it begins to get juicy and that intuition begins to flow, so stick with it and see what happens. On our next episode, you'll want to join me because I'll be chatting with Jaime Myers. Jaime is filled with wisdom about being your authentic self, getting in touch with what you really need, and following your intuition even if it's scary. So Jaime shared a great quote with me and she said, “Every master was once a disaster.” If that isn't the most intriguing quote, I don't know what is. So join us next time on Vibrant Happy Women and we'll see you soon. Take care.
Outro: Thanks for listening to the Vibrant Happy Women podcast at www.jenriday.com.