Episode 17 – Rob

No End in Sight, a podcast about life with chronic illness

Brianne talks to Rob about post-concussion syndrome, dating with chronic illness and disability in politics.

Listen on iTunes Listen on Google Play Music Listen on Stitcher

Transcript

Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

I want to apologize yet again, because I’m still behind on transcripts. I’m traveling on the release date for this episode (happy Valentine’s day, friends!) and I’m hoping to finish the transcript on the plane. I’m trying out a new program that seems to be speeding things up, so I’m hoping this might even get me back to a weekly episode schedule come March.

This week I’m talking to my friend Rob about his experience with post-concussion syndrome. I really appreciated Rob’s reflections about how this health setback has impacted his empathy, because he’s got a concrete story about that. Rob talks a bit about his history as a climate change lobbyist and imagines a future in politics that accommodates his post-concussion syndrome. We also talked about chronic illness and dating, which I definitely don’t talk about enough on this podcast.

I don’t really think that this story needs any content notes, but I do want to mention that I got a little woozy while Rob was describing his injury. He doesn’t say anything graphic and I am definitely triggered by the most random medical details, so this is just a gentle warning for any listeners out there who have hair-trigger syncope like I do.

Before we start, here’s my disclaimer:

This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: Okay, so Robert, how were you as a kid? I don’t know your middle name or I would say it too.

Rob: James, but I often tell people, Robert Q. [Smith] and I just in my dream life my middle initial is Q and I’m not even sure what that stands for, but. So, feel free to use that.

Brianne: And then esquire?

Rob: Definitely esquire. That’s actually, I’m invited to a wedding in May or something and they asked for, you know, do you have any formal titles? I’m like, “Well actually…” So I’m insisting that they print that out at the end of the card. You know, as a kid I was fairly healthy. I don’t think I had any major health issues beyond the usual, you know, you’re going to get colds and whatever and whatnot. I do remember and you know what actually, now that I think about it, I don’t think this is… No, this isn’t at all related. I did have a really bad health scare as maybe a two year old or something.

Brianne: Oh wow.

Rob: Yeah. Two or three year old. I don’t know exactly how or why, but in the middle of the night I just started bleeding like, out of my mouth a lot. My mom apparently… So this is secondhand, she told me that one night she sort of reached over because I was in a crib beside her bed and she was like, “Oh, his bed is wet.” And she flicks on the light and saw blood and I had to go to the hospital and I almost got a blood transfusion. But she worked in the hospitals and she knew that at the time while it was yet to be made public, there were concerns about blood supply and whether or not it’s, you know, how safe it is and whatnot. And so she was like, “Oh, I don’t know. I don’t know.” And I lost a lot of blood and apparently believe it or not, came close to actually dying.

Brianne: That would be so scary. Less for you because you probably didn’t know, but definitely for your mom.

Rob: Oh God. Oh, I can’t imagine. Fast forward years and years of health.

Brianne: Wait. I understand that this is likely not relevant, but do they know what happened?

Rob: You know what, I don’t know. I should. How about this, tune in next week and Rob will ask his mom in the interim, like, so what actually happened? I think it could have been. I can’t remember if I had my tonsils removed after or… I should ask her though because I really don’t know. She just told me the story and I’m like, “Oh, okay. That’s weird. Yeah. Here now!”

Brianne: Yeah. So fast forward.

Rob: Fast forward. I do remember, and this is interesting, sort of from we’ll say mid high school to we’ll say mid to late undergrad having anxiety or panic attacks and I think that’s quite common. But then that sort of went away. So I went to law school after undergrad and that went away then and largely was absent in my life. And what’s interesting is, and I’ll get into how I hit my head on a couple of occasions and now have something called post-concussion syndrome. But some of the things I’ve felt on the anxiety side of this concussion, I’m like, “What is this? Why is my heart racing? Why is my heart racing? Why am I feeling this way?” And after a little while I’m like, “Oh my God, I remember this feeling.” And I kind of put two and two together and a common result of people getting concussions is anxiety, panic attacks and so on. And I’m like, “Oh yeah, I forgot about this field, this is familiar.” And at least the one thing is when I put two and two together, there’s just some comfort in “Oh, so this is what’s going on. You actually don’t need to worry. It’s just this is what’s happening now.” Anyway, but so largely healthy as a kid. And maybe that’s a good segue into what I’m up to now with my head. So post-concussion syndrome is the official diagnosis and in order to get the post-concussion syndrome you need to get a concussion.

Brianne: Mmmmmm. Interesting.

Rob: Mm hmm. Language. English. Time. So yeah, so this was December of 2016. So about two years ago I was running to meet an MPP, a member of provincial parliament. So for the Americans who may not know what that means, just someone who… A provincial legislator. And so the work that I do, after practicing law I went into sort of climate change lobbying. For the record, I guess anti-climate change in that let’s try and do more to resolve this problem. Not lobbying for climate change.

Brianne: Like actively try to change the climate, please. Make it warmer!

Rob: Exactly. Make it warmer. Which would be nice sometimes. But I had enough time set for this meeting, of course, you know, with taking the subway and transportation, public transportation you can never know. So I just felt a bit of a rush and so I’m running to make my subway and I could hear the train pull into the station. So I’m still on the level above the platform. So I need to go down a set of stairs to get there. But I hear the train come in so I start to kind of make a run for it.

Brianne: I’m already cringing. all,

Rob: Yeah. Well I kind of already gave away the ending, spoiler alert right? So I’m running and I take this corner to go down the stairs too sharply and I guess I have too much momentum, so I slip. And my first point of contact on the way down as I fall is the left side of my head hits a metal railing. And so that was it. It was a simple… Oftentimes people associate concussions with sports and of course if you play, I don’t know, hockey or football or rugby, all these different games. Yeah, you’re putting yourself at risk for that kind of thing, but you can just lead a regular old life and you never know, things happen. So I remember sort of laying on the ground and I’m feeling like, “Whoa.” A little like my bell had been rung is the expression, but I see the train sort of slide into the station, come to a stop and I’m like, “I could still make it!” You know, climate change! I’ve got to make it to this meeting. So I push myself up off the ground, I take the stairs two at a time, and just make it and the doors sort of slide behind me and I sit down and it’s not until I sit down that I have a chance to kind of collect myself and I realize, “Oh, I don’t feel well at all.” And I had a friend, a mutual friend of ours, he had had a concussion several months prior, and I remember him telling me that he had trouble with speech. And he would maybe slur his words or repeat some of his words or stutter and so I remember under my breath. I’m saying, “Hi, my name is Rob Smith. I’m a lawyer. I do this climate change advocacy.” I’m like, oh, that all sounds fine. Right. And I’m just sort of assessing myself and so of course the left side of my body is covered with dirt from having been on the ground. And so I’m like, “All right, I’ll go to this meeting.” And so I’m just dusting myself off and I get to the meeting and I’m like, “So just as an FYI, I hit my head here and I’m not feeling all that well. So if I start to, you know, if I pass out, if I have seizures, if I have who knows what, just call an ambulance and explain that. Now let’s talk about addressing this problem called climate change!”

Brianne: That’s deep commitment.

Rob: Yeah. Yeah, it is. Which is also funny because for me in retrospect, it’s a bit of a, “Oh, you’ve really given a lot of yourself at sort of a personal cost to this.” Apart from this story, it’s a bit of a… I don’t know if it’s a metaphor or something but certainly a tangible example of what I had been doing for a little while. So I had the meeting and then left and right around the corner there was a coffee shop. So I remember sitting down and I said, “Okay, just let me take a second to kind of collect myself.” And about halfway through my coffee I was like, “I don’t feel well at all.” And so I went to the hospital and the physician, there’s a few tests you can do that are sort of helpful signs that point in the direction of a concussion. Like she had me walk a straight line, which was a little wobbly. She shone a light in my eyes and I think my pupils would have been dilated. So there’s a few signs, a lot of that sort of a diagnosis ends up also being self-reported symptoms. So what are you feeling? But there are these objective sort of indicators that point in that direction too. And she’s like, “Well, looks like you’ve experienced a mild concussion. And so for the next little while, don’t drink any alcohol, don’t watch TV.” She just gave me a few pointers and a little handout and that was basically it.

Brianne: Yeah. Be nice to your brain for a while.

Rob: Yeah. And I’m like, “Okay, cool. That’s easy.” Fast forward. So that happened I think on the 16th of December. So almost two weeks later, it was actually Christmas Day. I had had a headache just nonstop since that happened and it spiked to a point that I’ve never felt anything like that before in my life. And I remember being on my hands and knees in my kitchen and I had all the lights out and I just had my hands on my head and I felt like my head was gonna explode. And so I went to the hospital. The fear was that there are certain occasions where if you do hit your head in a certain way, you might experience some post-concussion syndrome and that can take a while to resolve, but you know, in the next 24 hours to maybe up to two weeks, there’s some serious symptoms and if they show you better deal with it quickly or you might actually die. And that happens. So I was thinking, oh goodness, maybe I’ve got some sort of swelling or bleeding or who knows what. So I went to the hospital and I remember walking into the emergency room and I go to the triage nurse and I introduced myself, I say, “Hi, my name is Rob and this is what happened a couple of weeks ago and this is what I’ve been feeling and so on.” And the nurse says, “Okay, just give me a moment. There’s someone who just came in behind you and it looks like they’re bleeding pretty bad. I’ll come see you in a second.

Brianne: Triage,

Rob: Triage, which makes sense. And so the nurse comes back and he says, “Okay. Pick up where you left off.” And I introduced myself, I say, “Hi, my name’s Rob. Two weeks ago this happened and I’m feeling this, that, and you know, dizziness and headaches and a bit of nausea and so on.” And he stops me and he says, “Do you know that you just told all of this to me?” And I said, “No…” So I was experiencing an inability to form I guess short term memory and that for me was quite disconcerting when I kind of realized that, “Oh goodness, what is going on with my head, what did I just do to myself?” And so I had a CT scan. Fortunately I think there was a specialist that happened to be there that night or was on call or something. And nothing showed up. So that scan doesn’t really diagnose this thing called post-concussion syndrome, but it can help rule out something more serious and life threatening. So fortunately nothing was going on in my head and that’s when for the first time this doctor sat me down and said, “Look, it looks like you’ve got something called post-concussion syndrome and here are the things you might experience.” And broadly, there’s three general categories of physical symptoms, cognitive symptoms and emotional symptoms. And so some of the physical symptoms that one can experience are dizziness, headaches, nausea, loss of balance, ringing in your ears. Some of the cognitive symptoms are, and I sometimes tell people, “If you think of your brain as a computer and it’s got a microprocessor inside of it. I felt like everything was just running slower for me.” So difficulty, you know, memory challenges, difficulty remembering words. Like I forgot the word for chair. I had to describe… the brain is so random, right? I’m like, “You know, the thing you sit on. It’s… You know…” And I recall thinking “That is such an easy word. Like, I know what it is, but I can’t…”

Brianne: Yeah you can’t get it. Sorry, I’m just slouching a little.

Rob: Yeah, that’s okay. So there’s some cognitive symptoms, difficulty reading. And I guess this is sort of on the physical thing as well, but it ends up being cognitive… And this ends up actually affecting people, especially in today’s working world a lot. I had a hard time reading off of a computer screen and I think we take for granted that a lot of jobs we do, that’s a big part of the job. And reading period. And then mental fatigue. So I would just want to sleep all day. And then on the emotional side, and this is interesting, but I think this is where I was a little dismissive. I’m like, “Okay, yeah, I foresee having some cognitive or physical challenges.” But then the doctor was like, “Well, people get anxious. They get depressed, they get… You know, there’s a lot going on there.” And I’m like, “Yeah, yeah, yeah. I’ll be fine.”

Brianne: That’s for other people.

Rob: You know, exactly. That’s for other people. That’s for… I’m too strong. And it’s funny, I’ve encountered… I’ll sort of go on a bit of a tangent here, but I’ve encountered, I recall this was almost a decade ago. I went on a date with someone and she told me that she’d just had a concussion and this had been months prior and she’s still struggling with some things. And I remember sitting across from her. I’m thinking, obviously I’m not saying this, but I’m thinking “You look fine. There’s no objective sign that anything is wrong with you.” And I made a judgment in my head, and I think of myself as a pretty empathetic compassionate person, but I did make a judgment in my head thinking, “Here’s a malingerer and she just needs to toughen up.” And you know, next! Swipe left kind of thing. And it’s so funny how now I find myself in this position and I’m like, “Oh! Yeah, I get it. You weren’t faking at all. This is actually hard.

Brianne: Yeah, and she was probably… Her memory seemed fine in her conversation with you and her speech seemed fine in her conversation with you. And so maybe that first round of things at the doctor warned you about, was what past you, former Rob, knew to screen for as it were.

Rob: Yeah, that’s exactly it. [zipper noise] Sorry, I’m just zipping up my coat, I’m a little chilly here.

Brianne: It’s okay. I just did the reverse of that.

Rob: So it’s funny and I know that even now speaking with you, I think I come across reasonably well, but it’s taking a bit more focus. It takes a bit more effort. We’re on a video screen right now and it’s not bothering me yet and if it does, I’ll look away or down, it’s fine.

Brianne: Or we can turn off video.

Rob: Exactly.

Brianne: Definitely flag that. Because like I said, I like it because it helps when one person is speaking a lot, but it is not at all a requirement if it’s sensory overload, et cetera.

Rob: Thank you. Yes. sensory overload. Anyway, I’ll just pick up where I left off, so the emotional piece anyway. And I was a little dismissive of that until I started to go through it months later and was like, “Okay. Yes.” But just a quick thought while I’m thinking of that date that I was on. It’s funny how… And I think this might be true of a variety of illnesses as well, where I think as a result of this, I think I am a bit more compassionate and empathetic even though I thought I once was before. But now you can look at someone and they look entirely “normal” but you don’t know what’s going on in their life. You don’t know what’s going on in their body and their head. Maybe something tragic happened to a loved one the day before. And so I think just a lesson at least I’ve learned – and in a weird way through these sorts of life challenges you can actually learn helpful lessons – is to be less judgmental, to just take people as they are, love them as they are sort of a thing. And similarly to the extent to which this has presented me with some frustration and some challenges and you know, I feel less able to do some things that at one point in my life I could do quite easily. So also, you know, love yourself just the way you are. So that ended up being, that’s what happened. This would’ve been about two years ago and I ended up then really for months, it probably took, I want to say close to a year to get back to relatively normal. And then maybe almost another year to get back to what I generally call like 95%. And I was like, you know what, sure, I still get some headaches now and again. But oh boy, big picture, I am super lucky, super privileged. Life is good, I’m healthy, you know. But it took me a while and I think when I was in the thick of it, and this is why the podcast title No End In Sight, I would always sort of describe it as no escape, but it’s like this, it’s 24/7. I would have a headache nonstop. I never didn’t have a headache. It would vary in intensity. And sometimes I just, if I had made plans, that’s it… I need to just go into my room and not do anything and just have a day where I pull the blinds and it’s nice and dark and quiet, to days that I’m out in the world and I’m fine and it’s just, “Oh, I’ve got a mild headache and that’s just the way it is.” It took me a while too, so dizziness was a thing and when the room, it’s sort of this feeling sometimes of, I think people call it the spins where if you’ve had a little bit too much to drink, you’re not maybe drunk but you’ve had too much to drink and the room starts to spin a little bit, but sometimes it’s almost like, “Oh, this is a pleasant lightheadedness” type spin, but it’s like being a little drunk, but it just doesn’t feel good, you know,

Brianne: Without the drunk part and when you’re drunk it usually doesn’t feel good either. But maybe it was good first. You can explain more about the spins. I had a bigger follow-up question.

Rob: Oh, feel free, my, I’m just sort of, I’m just wanting to almost chronologically share and bring you up to speed, but if you have a thought, please do interject.

Brianne: Yeah. I want to interject just before we get into the phase two that I know is coming. So at this point… so one, you’re in Canada, so healthcare is covered, which is helpful in situations like this where it’s maybe obvious what happened even if it’s not… like treatment isn’t great. So I’m wondering in this period where, so the first year when you’re really not sure how long it will last and then the second year when it’s starting to improve, but you again don’t know what to anticipate. What were you up to? And kind of across the board. So from a perspective of like, I know how you had been working before that and you mentioned being a pro-climate change lobbyist, [Rob laughs] so I know what you were doing, but what did it look after your head injury when you had previously been self employed and working very, very hard, which you alluded to, to all of a sudden it’s not like you can just ask somebody for accommodations, you have to rework your life. So how, what did that look like for you or how was that?

Rob: So I think it came up recently with a friend where I want to do this and at some point I will look at, and I know there’s Apps, I think actually even from twitter you can download all of your tweets and then you’ve got a nice little spreadsheet of data. When did I tweet? How much did I tweet and so on? But I’m willing to bet if… so I launched a climate change nonprofit and without getting into too much of the details it’s largely lobbying governments, mostly municipal, but sometimes federal and provincial, across Canada. And so fairly involved and lots of reading and writing and conversations and lobbying. After this happened, so I think my tweets for example, would show a lot of tweets in 2014 and 2015 and all 2016. And then at the end of 2016, I think it would just, you know, if you could chart tweets over time, there’s just this precipitous drop and, and I don’t think it recovers. And I think you might see little blips of activity here and there. But so unfortunately a lot of the advocacy that I was doing, I had to pull back and what momentum I did have in this campaign frankly was lost. So I even remember this was a couple months after this happened, I had a meeting with an MP, so a member of the federal government.

Brianne: A congressperson, basically.

Rob: Yeah. And I remember going to that meeting and it was such a hard conversation. It took so much effort and focus and it felt like, and I was with a friend at the time and it felt like… this is the only way I can try and relate this. But someone took a spatula into my brain and actually flipped it like a pancake upside down at one point. I was just like, “I need to leave, I need to go home. I can’t do this.” So that was sort of the work that I was doing. I ended up… this is interesting too now that I think about it. I had through a patreon account, so an online sort of donor platform, I had quite a few contributors that were able to donate and that didn’t quite cover for me the cost of living, but the balance I put on my credit card, which is not a good sustainable approach. But I also had the good fortune of owning my own home so I didn’t have to worry about rent. Things didn’t quite balanced out and that sort of speaks to the privileged starting position that I would have had because otherwise I would’ve been in a lot bigger trouble financially. But I had to pull back in a big way and the thing that I ended up focusing my attention on as much as I was able to was a book that I was writing. And so what that meant was, yeah, I might not be able to spend too, too long on a laptop, but I can have little moments here and there and maybe I type a page or two or something and then, okay, I’m starting to get dizzy and headachy so that’s it for the day. And just expect that and be at peace with that. And it’s funny how sometimes the frustration that’s created by the gap between your former self and this person you’ve now become. It creates a lot of frustration and you can get upset and even grieve the loss of your former self or the things that you took pride in that you were able to do quite well and now you’re struggling with. And that actually feeds into some of the emotionally challenging piece of it all.

Brianne: Yeah. And I’d imagine it’s hard to pull those apart. Like you’re talking about the anxiety feeling familiar. And also this grief that is totally explainable. And so I’m sure it’s… you’re kind of going, “Wow, my emotions are on overload or I have a lot of feelings about this.” and it’s impossible to know, and maybe you don’t care, but I think I would still be frustrated by it. Like how much of this is a natural grief response and how much of this is my brain’s capacity to process stuff. It’s not a question that I think there’s an answer to, but it complicates that. I’m sure that complicates that experience.

Rob: It does. It adds layers and maybe it’s hard to parse out, but it’s interesting. And this is sad but true, but a simple knock to the head – and there’s studies that show this – people who have had that, they experience depression in much greater numbers, the suicide figures are much, much higher. So there is this, I don’t know, biological, physiological, there’s that, and then that’s compounded by this grieving of, “What am I going to do? Who am I now?” I even remember, so when I came back from the hospital on Christmas and then realizing, “Oh my goodness, am I having trouble with my memory?” So before doing this environmental advocacy, I practiced law and I found myself in court once or twice a week and over time… at first when I started doing that, I was so nervous being in court, but over time I grew to actually enjoy it and that was a bit of a highlight for me. And I kind of even took pride in, and I was talking to a friend too, like pride is a tricky thing. I think it’s healthy. It can be unhealthy too depending on it. But I’m like, “No, I like this and I feel like I’m good at this.” And I think one, preparing for a trial, preparing to cross examine someone, there’s a lot of work there. But I think a big part is being very present while you’re listening to someone and working with their answers to try and get them to say what you hope for them to say. And I thought to myself, “If I can’t remember what someone just told me, how on earth can I ever do that sort of work again?” And then you start to get this sort of, maybe this is a job I can’t even do. So for me, sometimes I thought, “Well I’m doing this environmental advocacy, but I always have this legal career as a fall back.” And I’m thinking, “What if I can’t do this?” And then there’s this economic anxiety, there’s this financial anxiety, apart from just the identity piece and the things that you once valued about yourself that you’re struggling with. So all of that, just the straight up you hit your head equals sad. And then this other layer. I definitely went through a spell where, yeah, where I was sad. And I don’t think that I was ever at… And I even remember talking to my neurologist about it and she asked me these questions like, “Do you ever have suicidal thoughts?” And this kind of a thing. I don’t think I was ever at any risk of that, but I certainly remember these occasions where I’m waiting for a subway and it’s coming into the station and I’m like, “Ooh, this would be so easy.” And put your back against the wall to reduce that temptation. Like I remember actually doing that. So it’s interesting. It’s interesting how that can happen. And it’s interesting too, how I, especially at the outset was so dismissive of the possibility that I could ever have those types of thoughts. So it’s trying. And I was listening to an episode of The Agenda, which is sort of a public affairs show here in Ontario. And they happened to have a panel of people that had concussions and they were all actually athletes and part of me was like, “Ugh! Can’t you get a normal person on there? You don’t have to play professional football to experience this.” But a lot of them said like, “It’s tough. And I would trade in my gold metal, I would trade in my football career. I would give all that up if it would mean that I wouldn’t have to be dealing with this stuff now.” So yeah, so it was a bit of a window into that for me. The good news is over time I did get better. I was making some progress on the book and at least that was the way that I felt like I was still being productive and working towards something. I think there was also this loss, especially in a world where I think productivity is something we value and how we’re contributing to this world. And if you pull away for whatever reason, be it a health issue or you know, there’s a real loss of a sense of self and a sense of self worth too. But I started to get better and I was making some progress on my book. So that’s when my laptop was stolen.

Brianne: Yeah, I remember that.

Rob: That’s when I learned: Back your things up to the cloud! This is the PSA for everyone. Two PSAs: one, don’t hit your head. Two, back your stuff up to the cloud. By the way, brought to you by… Is this a good point to plug like, I dunno, one drive or dropbox or?

Brianne: Like every cloud service? I’ll send them all notes and see if any of them want to sponsor this episode.

Rob: Exactly. So that in itself was then a whole other story, but that…

Brianne: That would be incredibly frustrating, let’s call it.

Rob: It was, yes, fair to say. So, fast forward, I’m feeling much better. And a lot of these symptoms have almost resolved completely. The only lingering one was now and again I get a headache, but if that’s a once a week thing, like again, I’m fine. So it got to the point where I said, “You know what, I think I’m ready to apply for work.” Still climate change related, the stuff I was doing was fairly narrow and I thought, “Go broad in your search.” So maybe I’ll find work in Canada. I spent some time overseas in Europe where the work that I was doing was sort of received reasonably well, and I thought maybe there’s some opportunity there. So I decided to up anchor by selling my house. I listed my place for sale and around the same time I was winding down my nonprofit, so closing that up. And I was working on sort of an online resume portfolio thing. Bought a squarespace site, was halfway through designing it, and I… oh my god, that’s another opportunity.

Brianne: All the brands you mention!

Rob: “Dear advertisers…” Promo code.

Brianne: I’m just slouching again, because the details get to me a little bit. But so anyway, so you’re making your website on squarespace…

Rob: Which is a great click and drag and drop and user friendly… I see you nodding.

Brianne: Sure, sure. Listen to any podcast in order to hear all of the merits and squarespace, I would say. I don’t know if I’ve ever heard a cloud storage ad though. So…

Rob: I think there’s an opportunity.

Brianne: Big opportunity.

Rob: Yeah. So I’m actually feeling quite optimistic as I hop on my scooter, it’s like a vespa knockoff, and I’m riding my scooter downtown to go to this library to work on this. And again, feeling like I’m turning the page, I’m feeling optimistic and so on. And for those of you listeners in Toronto, I’m riding south down Yonge Street and just south of Lawrence… so I’m on the curb side lane and there’s a lane to my left and the curbside lane starts to open up to accommodate both the southbound traffic and a full parked lane of vehicles. And I’m driving and then this car from the parked area comes into traffic so sharply. Either she didn’t look at all or she did look and she didn’t see me, but if I didn’t swerve to avoid her, I would’ve slammed right into her. But in the process of swerving and braking to avoid her, both me and the bike sort of hit the ground and I’m now sliding down the middle of Yonge Street. [Brianne groans] Yeah. Not Fun. So I also remember, fortunately the driver behind me stopped. This is also like… I now have such little tolerance for people who are on their cell phone when they drive because if the driver behind me had their head down for a second, it would only take a second, I would be run over. No question.

Brianne: Yeah, that’s a really scary part of that one. Not at all the same experience, but I’ve had a number of bike accidents and my last one was in Toronto on Spadina. A commercial recycling bin, so a large recycling tub, randomly blew open as I was passing it and just hit me straight on the side, I immediately went over. And if there had been a car anywhere near me, they could not have predicted that that would have happened. And that one piece that you just described brought me back to that because I went to the hospital, but if there had been a car they wouldn’t have… no one could have predicted that happening. And in the same way, your reflexes kicked in, but your reflexes put you onto a different path and so then their reflexes have to kick in. Like it’s a sophisticated situation to keep people… Ugh. Anyway, that’s my ugh.

Rob: It is. As a side note, one of the things actually in a weird way I like about riding a motor bike is you have to have both your hands on the handlebars so you don’t even have an option to be on the phone. And I see, it’s amazing when you’re on a two wheeled thing, you’re a much better driver because you’re so hyper aware. And I remember seeing… I am shocked by how many people are on their cell phone. Like it’s shocking. Anyway…

Brianne: So you were knocked over, they braked.

Rob: Yes, they braked. I’m now sliding down the middle of the street. And I come to a stop and I’m definitely breathing quickly because I guess I’m in shock. But I sort of have the wherewithal to… I see my bike lying on its side in front of me and I get up and I hobble over. Then I’m definitely in pain. I don’t know what’s wrong with me yet. So I kill the ignition switch and then hobble over to the curb because I ended up, fortunately my knees were okay, but I banged them pretty bad at the time with the way that I hit the ground. And so I sort of hobble over to the curb. I sit down and someone comes up to me, a pedestrian, and she says, “Are you okay?” And I remember from the curb slowly moving up to look at her. I’m processing this question like, “Are. You. Okay?” And answering “I don’t know.” And I recognized even in that state that, “Oh god, the words are coming out of my mouth so slowly.” And I realized in that moment that I did it again. And I just broke down. I started to cry because it took me close to two years to get over this thing and I was feeling so optimistic and you know. And so, so this woman actually, which is nice, obviously she could tell I was sad. So she held my hand. And it’s so small, it’s such a small gesture, but that was so incredibly comforting, you know? So an ambulance came and picked me up, took me to the hospital, exact same hospital, believe it or not, as where I was almost two years prior. And funny thing, the person there who was taking me in, we’re kind of looking at each other like, “Do I…? Were you…?” And we realized, “Wait a minute, were you here, did you hit your head before?” So it was hilarious. I’m like, “Yeah, it’s me again, sorry…”

Brianne: You’re like, “I swear they’re completely unrelated!”

Rob: Exactly.

Brianne: How did this happen?

Rob: I’m trying my best! I really am. I don’t want to be back again a third time. But, so I go, I see the doctor and she does a similar series of tests and same sort of diagnosis and here’s the handouts and I’m like, “I’ve got that handout at home. Save paper, it’s fine.” Yeah, I had my… So my back and neck was also hurting and my knees were pretty banged up so I had an x ray on my knees and it turns out they were just bruised really, really badly. So eventually with time they got better. My back now fortunately is fine. I still have some lingering neck stuff, but it’s largely resolved. The biggest thing now is just this concussion. And with that some of the symptoms for me right now sort of include a sensitivity to light. So this presentation I just at, for example, there was a large screen that was lit for the presentation. So I now, like I have for example in my backpack, right over here, a ballcap. So I tend to wear this for overhead lights. I also have sunglasses that are somewhere, where if I’m looking at directly to screen, I know now I’ve learned that I might be fine to look at it for a little bit, but a particularly bright screen for an hour-long presentation, that’s going to ruin the rest of my day. So I wear those glasses preventatively? I’m getting much better. I’m able to spend more time on my laptop now, which is good.

Brianne: Thank you for doing it with me!

Rob: Hi! Yes. But I still do experience some dizziness now and again, the emotional piece is still there, but I think almost in a way as a result of what I went through before, I’m kind of like, “Oh, I know this now.” I feel a bit more resilient to the extent to which last time there was a period of just, there’s no escape. Like, is this ever going to get better? Part of me is now… While you really shouldn’t get multiple concussions and there’s some risks involved with that as well. But part of me is like, “Well it got better last time. It took a while, but know that if you’re feeling like there’s no escape right now, last time it did get better. So there’s a light at the end of the tunnel. So hang in there and try not to get too down.” One of the things which is actually interesting too, is how too much exercise can bring about symptoms. So I remember after my first concussion if I were to run, my head would be pounding and I would feel dizzy and nauseous and so I couldn’t do that. So I said, “Okay, we’ll wait a bit.” A couple months later I go to the gym, I try to do some pushups, two or three pushups later the room is spinning. I’m like, “Okay…” So it’s funny, it’s a head injury, but I’m a reasonably active person and I like to feel strong and healthy and so on. And for me, moving my body is a way to do that. And I’ve lost a lot of muscle mass. This is funny, I had a bath, believe it or not. So the place I’m staying now, I stayed at for like two weeks while my friend was away. This was recently, and so I had a bath in her bathtub and I sat down in the tub and I’m like, “Whoa. My bum feels more squishy than it used to. I think I’ve put on some weight and it happens to be on my bum.” Yeah, right. Yeah.

Brianne: Yeah, body composition is changing.

Rob: Yeah. Like, “Oh yes, this is what happens if you don’t exercise.” So I’m eager to get back to that, but I know it’s like, well you’re not there yet. And I try to do some exercise to push myself, but I know I’m not there yet. So it’s amazing how one simple little knock to the head actually can change you in a lot of ways. And I am still optimistic that this isn’t a forever thing.

Brianne: Right. And that this expression right now is going to change.

Rob: Exactly. And so I’m not… There are some people with concussions that just, it doesn’t resolve. There’s so much variety too. So two people can hit their head in very similar ways. One person has symptoms for a week or two, another person will have symptoms for years. It’s really strange. But yeah, so a part of me in order to almost feel less frustration and less loss wants to say, “Well, just accept this is where you’re at right now.” But another part of me wants to almost fight against that and say, “No, don’t accept this. Work to improve it. Do as much as you can. You will get better.” So there’s some interesting tension there too.

Brianne: Yeah, I think about that all the time. Of the combating forces of acceptance, like you just said, which looks like, “Okay, if this right now is what my body is going to be like forever, then how am I going to behave? Like what am I going to change?” And I think that came up a little bit in some of the stuff when you’re adapting. Because you have to do something with yourself, right?

Rob: Yes!

Brianne: And then also, accepting to a certain extent is necessary to not drive yourself nuts. But also maintaining optimism, especially when it’s something like in your experience. But I think that your experience is analogous to a lot of people who have diagnoses that flare. And even though the thing that would have caused your flares are obvious injuries that we can point to, the thing of “There’s an incident and it causes something and then it takes a long time to come down.” And you’re like, “Well I’m optimistic that there will be down times.” So times when I feel my most functional and I want to look forward to those and hold them as something to work towards. But if you’re obsessively working towards those, which sometimes that doesn’t even look like anything. Like there are only so many things that you can actively do besides wait, right.

Rob: Yeah, it’s like take… I’ve got this fish oil or something. And I know, because I’m vegetarian, borderline vegan, and I try to find plant-based alternatives. But I’m like, “Okay, just accept the fish oil.” Everyone was like, “Take the fish oil.” It’s like, “Okay, I’ll take fish oil.” And so I do that. But you’re right, there’s only so much you can do. A big thing even with concussions, so some moderate exercise to get your heart rate up a little bit to feed oxygen to your brain, studies show that’s a good thing. But to then overdo that to the point where you feel symptoms is a bad thing. So there are some things you could do, but the biggest thing is just time.

Brianne: Yeah, you can’t do them 24/7.

Rob: And your brain needs time to rest. And I, here’s actually a tangible, sort of like an objective sign that I have improved. In the few weeks after this I spent a lot of time just on my couch napping. And I think that’s just my brain was wanting to almost shut down to repair itself and I don’t really nap now. So that’s an actual measurable improvement, right?

Brianne: Yeah, totally.

Rob: It’s also tricky. Something that you said just a moment ago that really resonated was that you need to have something to do, right? I had this, I don’t know if it’s a theory, but I remember thinking to myself, especially the second time in the first few weeks that followed, I felt useless. I remember to myself using the words, “I can’t do anything. I feel so useless.” And then not even that, you then jump to the conclusion, “I am useless.” And it’s not helpful, but that’s what I was feeling. And I remember thinking to myself, “Okay, if I can’t read…” Reading was a struggle, reading more than a paragraph was about all I could do before I’m like, “I’m exhausted, I can’t focus, I can’t…” But that’s getting better now, fortunately I can read a lot more. But still nowhere near, you know, pre-accident. But I had this idea where it’s like, and I think this is almost like cave manny days or like when we lived more in tribes or I don’t know what the, you know, sort of more simpler… Where in order maybe to be a valued member of that group, you wanted to contribute, you wanted to serve in some way. Maybe you’re taking care of some of the children or maybe you’re plowing the field or maybe you’re cooking a meal or something and that gives you value and that means you’re a productive member of that community. And I began to think, “Well what on earth can I do?” And so I remember my friend Megan, she came over once, brought a soup that she made and it was just nice to have a company. And then she starts to do the dishes and I’m like, “No! Don’t! That’s something that I can do!” And it’s so weird, but for me to do those dishes, I felt and it was so weird, but then seeing them on a dish rack, it’s like I accomplished something, you know? And even I could have like a little tick box, just know I did do something today. And this is even, so my friend’s apartment where I am right now, I came here and she’s just been crazy busy lately and feeling a little sick, under the weather. And I noticed that her dishes are piled up in the sink. In a way I was like, “Yes! I am so happy. I can do this.” And so before we started chatting I finished her dishes. I think, if what you were doing however you were contributing, you then lose that, you almost need to reinvent yourself. And I’ve been experiencing… I now ask myself at times I’m like, “I think I can go back to practicing law.” I think I can, like not now the way I’m feeling today, but if I recovered to the extent to which I did before, I think I could. I think it would be at like a slightly compromised thing. So maybe mental fatigue kicks in a little sooner. But by and large, I could still do the thing. But you then start to think of like, “Well, you know, what else can I do? How else can I contribute and what does that look like?” And I think for people, having listened to some of your podcast, who are dealing with chronic illnesses, your range of ways that you’re able to contribute gets narrowed and it’s a tricky thing to navigate. Especially when so much of it is, not just about, “How do I contribute or how do I earn income?” And those are super important, but when it’s like the identity thing as well, right? Um, yeah.

Brianne: “How do I feel valuable?” Which I think for many, most probably, of us that is the same as, “How do I earn a living?” How do I feel valuable? How do I earn a living? And when they become necessarily decoupled, you’re like, “Oh shit…” Even if… Not to say that money isn’t an issue, but maybe you qualify for disability, or maybe you have a safety net, or maybe there’s something else in there that gives you the time to recover. There’s still, that other thing is still lingering there, which is why it is so obvious to me that they are both separate questions once that happens. People want to be a part of something or feel like they are doing something, doing the dishes, doing… a thing that brings joy or ease or whatever to someone around them. And we can do that at work, but when work isn’t working, how does that happen?

Rob: It’s tough. Yeah. And I think maybe that’s when these things can serve as a prompt for reflection. And here’s the big thing that I kind of struggled… Like how do you value a person’s worth, you know? And is it by how they contribute to our economy, which is maybe a colder way of looking at it, but of course within that there’s lots of valuable, useful… I don’t know, I want to say goods and services, do you know what I mean? That are needed. And so it’s not just about making a living. But here’s something that I thought of. So the work that I was doing, I did have some impact in some ways through this environmental advocacy, but I began to realize that you can be on the outside knocking in, you know, to a politician’s door and saying, “Hey, we really need to be addressing this issue.” Whatever it is, pick a topic. But if at the end of the day, the person in office, especially if a change you’re proposing might rub up against the status quo and if they’re not as courageous to take that on, you know, then you’re SOL with whatever change you’re trying to affect. So, and I’ve thought of this in the past and in the past. So I’ve, I’ve thought, “Hey, why not run for office?” And the pivot that I made years ago was, “Well, why not just do advocacy from the outside and empower those already in office with different ideas.” But I keep… After this experience of doing advocacy coast to coast, I keep landing on, “You know what? You’ve just got to run for office.” Like you’ve just gotta have the right butts in seats and you just need 50 percent plus one to do anything. But then I think to myself, “My brain today, does it have what it takes to do that?” And to read a bunch of reports and to talk to constituents and to knock on doors? And I don’t know. But then, and here’s to the, “Well, how does one value themselves” sort of a thing? I think of some people that are in office that may have at this point greater say brain power than I do and might have more mental stamina and might be able to read 100 pages where I might clock out at 80 or something. But frankly, are we allowed to use bad words on this podcast?

Brianne: Yeah, they’re all tagged explicit just to make it not a question.

Rob: Okay. But what if they’re an asshole? Do you know what I mean?

Brianne: Yeah.

Rob: So you can have someone that’s really sharp and does a lot of work and can read all the reports, but maybe they’re not empathetic, maybe they’re not kind, maybe they don’t value the importance of having a viable climate and so on. And so I say to myself, “Hey, if I had the choice to vote for someone who maybe their work day would end at five as opposed to seven and then they have to go home and they’re done or maybe they can’t read all of the reports but their values I think align well with mine and I think they’re a compassionate kind, decent person versus you know, someone that where that’s not the case.” Like I could pick a person. I was goning to say Donald Trump. But then I don’t think he has the mental faculties as well. So that’s a separate… You know.

Brianne: Or like the Fords right now.

Rob: Again, same problem. He’s the guy who doesn’t have the heart or the brain.

Brianne: Yeah, and neither did Rob Ford.

Rob: That was mean, I’m sorry.

Brianne: No, I know. But they’re… yes. It’s hard with those kinds of examples because they seem like accidentally malicious as opposed to conniving.

Rob: Yes. So where I’ve kind of come to is I think maybe if that’s a path I wanted to take, there is still a place for you there, you know, and to not give up on the things that you’re concerned about and even if to some degree you’re somewhat say compromised in terms of, you know, I’m somewhat compromised in terms of what I can do in a full day mentally. Again, I’m hoping that I do recover closer to what I once was before. But then like, you know what that is okay. You still have a lot to offer deep down, like when it comes to… And when I think of friends, like who do I want as my friends say, I’m like, I want someone who’s kind. I want someone who’s loving. I actually don’t care if they can do a math question really well. Do you know what I mean? I mean that’s nice and maybe they have a great knowledge of history or whatever. But like…

Brianne: There will be moments when you need that friend, but like it’s not exhaustive. It’s not all your friend needs.

Rob: No, exactly. Yeah. It’s not like… Yeah. So I think it’s funny then. I think if you, maybe through going through something like this can strip the… at the end of the day it’s almost the less meaningful parts of yourself and go down to the core of who you are. Then you realize, “No, I still value myself. I still have a lot to offer. Even if in some way I do feel somewhat compromised right now.” And then to love that, you know, and at the same time having been through this myself then… Because when you do have that insight, again, going back to what I said sort of before, you really don’t know what someone’s going through. You don’t know where they’re coming from and just kind of take them as they are, right?

Brianne: Yeah. And I think one, this actually makes me realize that I know very little about disability and politics and I would love to know more about that. So that’s a task I’m assigning to myself to learn about. But two, I think a big part of it is also figuring out how to build a team to accommodate yourself. So the way that you’re talking about the needs of it. And I think this is true for lots of different things when it’s like, “Okay, well what’s true?” What’s true is that I have something that I’m really passionate about and I would love to impact that space. However, and I’m live-thinking about this because you’re making me think about it. But this is true that I have a commitment and I have passion and also the ways that I previously thought that I could act on that are no longer possible for me. And maybe that will change but if I want to make a plan now I have to assume that I will have limitations. And so then how can I build a plan that works within my limitations and what kind of support do I need? Which I think is a big part of the question. And for you in this specific example you’re giving, it’s like, “Okay, well who can I find that is really good at summarizing for me because if I’m not gonna be a report reader then maybe I just need someone else to be my report reader and then…

Rob: I’m totally looking at you because I’m like, “Wait a minute! I think you’d be great at summarizing.”

Brianne: “You’re an information synthesizer!”

Rob: [laughing] Exactly! Can we pause the podcast right now just to talk about it? You could be on team [Smith].

Brianne: Yeah definitely, to get ready. But like, so that’s some of it because I think about it. Or like I was talking the other day to Liz from episode five about how she wants to do more writing and she also actually is a lawyer and not working. I think she does some contract work and she just… I have to read it still because she published it like yesterday, but she just wrote something on Medium about a term that she’s using now called immunodiversity. Which is like, first of all it means what you think it means. So it’s like thinking about the chronic illness part of disability, which is not exactly the position that you’re in, but is relevant like, okay, there’s this lingering thing and I can’t predict what it will mean and we still need to build systems that support people like this and that empower people like this more likely. And so I love the concept and it’s thinking about that and so she’s writing and speaking, but writing and speaking within her own limitations and trying to figure out what to do. And it’s just like, here’s a person who really cares about something and you’re in that position. Like here’s a person who really cares about something and there are tons of disability advocates for sure, but I’m so interested in what it looks like to pursue these outside the model that I think we learn about, which is that if you really want to make change, you’re going to work on it 90 hours a week. And if you want to get into politics, if you want to write a book, if you want to whatever…

Rob: You know… So I think a few thoughts come to mind, one is simply, you know, differences and abilities will vary so much and when I think of myself, for example, an accommodation that might be helpful is, as you say, someone summarizing could help, but I know that I can read off the page much easier than I can read off the screen. And so, okay, so just print reports. A lot of municipalities, I would want to run at the local level, have moved to ipads and whatnot to save paper. And I think that’s commendable. But also I think it’s okay to print out reports. So there’s actual tangible things I think one can do. But I’m also kinda thinking if you have someone who’s so passionate about wanting to affect change in a particular space, sometimes I think, and I think this might be a calculation that’s made maybe more in the world of business with costs and benefits when it’s going to be a salaried position, but then what are the costs that are going to have to be incurred to accommodate this person? And net, are they contributing or are they more detracting at least financially. And I say to myself, even if on the cost side, if you do have to incur some expenses to accommodate a particular person, if this person’s really like, “Oh boy! I so, so, so want to help. You have no idea how bad I want to help!” I think in terms of return on investment that could actually be a net positive or a really good decision. The more general point I think, which I think is actually at least in the political world, but maybe in other institutions as well, you want your legislative body, whatever level of government to be reflective of the people that reports to represent and if you have a variety of people in your community with different abilities and backgrounds and whatnot… Yeah, of course. So the obvious one, of course, is yes, let’s have some gender parity. If a population is roughly 50/50, you know, Duh, that’s a no brainer. And yet still, that happens to not be the case. And so there’s a lot of that, where we can sort of… but just to bring it back to differences in ability and especially after going through this, I would want someone who has experienced this to have that voice in that body. And because I know now having gone through this, I think there’s a lot that I learned. I think there’s a lot of value that I can contribute as a result of this. So yeah, it’s funny how in a way it’s not like a cost, you know, to bring someone in. Which is I think how… And if I’m being honest, I think me circa a few years ago, I would have thought that way to a certain extent.

Brianne: I think it’s a value that we don’t know how to capture yet. Which, that’s also businessy language and I don’t have better language for it yet because it’s a question that I’m so actively noodling. Also, my background brain programming just thought of Jean Chrétien who is the only politician that I can think of so far in the like five minutes that have passed, because he had a stroke. And I don’t know when in his career he had the stroke, but obviously he was prime minister after having had a stroke and that makes me super curious about what that process was like for him in terms of rehabilitation and either getting back into politics or staying in politics through that.

Rob: That is fascinating. And I now, as soon as we’re done I’m going to do a google because I’m curious too. One thing that I think is interesting just on that, and I think this is cause for hope, a strategy of the party on the right when he was running for prime minister was to kind of mock him. You know, and I don’t know how intentional that was or if that was more of a silly off-the-cuff thing or if that was like, “Okay, let’s try this approach.” And it was a well thought out backroom thing. But that totally backfired. And I’m heartened by that because I think it speaks well to, I guess Canadians, but hopefully you know, people more globally. Like, yeah, you know, here’s a person who… I don’t know, I’m sure we can all criticize looking back at his legacy, could have done this could have done whatever. But by and large, I think here’s someone who’s trying to do something positive for his country. He’s presenting a particular vision and that’s coming from a good place. And yeah, and if someone because of a physical disability or I don’t even know the degree to which his stroke, I know it left his mouth, his smile was not symmetric, but if he had any other challenges,

Brianne: Yeah, and I don’t know. And I also, I imagine that stroke similarly, like the rehabilitation process will be different for everybody. But you know, you go through some stuff in your brain with that one. To put it really medically.

Rob: Yes, exactly. Brain! Yes, it’s heartening. I think that’s an interesting example to point to of someone that would’ve gone through an experience like that and was still very able to contribute, right?

Brianne: Because now also there’s a senator I think. See, this is bad. This is my brain. There’s a senator who I believe is a double amputee, currently right now, Duckworth? Now I’m going to sound like an idiot if that’s wrong, but here in the States who has been like super, super critical of Trump. But that’s more where you hear about her, she’s a veteran and somebody in her family has fought in every single American war or something. And so she came home injured, like as a veteran, and then ran for office. And so in terms of disability and politics, that also matters. I think what’s interesting possibly about Chrétien is that there might’ve been a time when he was also recovering specifically from a cognitive impairment, but I don’t know what that would’ve looked like. But these are questions.

Rob: Yeah. I was talking to my friend Jay earlier today and he went through a challenging period as well. It wasn’t a physical thing, but we noticed some parallels. And he says, and this is sort of a conclusion that I’ve come to as well, you don’t want someone to hit their head. I don’t wish, obviously, this upon anyone, but it’s interesting how much I think I’ve learned as a result. How much I think I’ve changed. And at the end of the day all of those things, like to be more empathetic and that’s definitely a big one. Those are important lessons, you know, and sort of thinking about say a person’s value or worth or so on, in a weird way… And I’m honestly just, you know, things are falling into place right now as I’m speaking. I think I’ve got more to offer now than I would pre-injury. Like if I’m thinking about, say, a running for office type scenario, right?

Brianne: And like, EQ. Emotional quotient.

Rob: EQ, exactly.

Brianne: I feel like there was a fad around it because I don’t think I hear that term very often, but…

Rob: There was, there was and I do remember that. The emotional quotient. I think it’s good because we’re sort of on politics to maybe, you know, what’s the opposite of someone who’s quite empathetic? Which I think you would want. Maybe the opposite is a sociopath at the far end of the spectrum.

Brianne: Yeah, I think that’s the full opposite.

Rob: And then it’s like, “Oh, wait a second! That’s not who I want as a leader. That’s not who I want representing my community.” So yeah, I want to almost take a second and just say thank you for helping me just through the course of this conversation to come to this, but that’s a win. That’s a good thing.

Brianne: The beginning of your campaign strategy.

Rob: Yes, exactly. Vote empathy 2020 or whenever. Actually no, vote empathy now, why wait?

Brianne: Why wait! I don’t think I’ll have… Actually no, we have… It’s not even municipal because I live in a town, so we vote for one of our selectmen every year, one of our selectpeople. So we do have an election every year, so I’ll keep my eyes out.

Rob: Yeah! Benness 2019. Benness Now!

Brianne: Yeah. As a really relevant aside. Well, Adam really wants to run for mayor, which in case it wasn’t clear from what I just said, our town does not have a mayor. But he wants to be the mayor. And so his platform is mostly that he wants to… He’s anti-spider. That’s his platform. But I think the whole situation is that he wants a sash that proclaims that he is the mayor and he wants to be able to stand in front of town hall on holidays with his sash on, which I think he could just do.

Rob: He can. There’s nothing preventing him from doing that. I am very pro sash. I think I’m anti-anti-spider and I encourage Adam to learn more about spiders because they do offer a lot.

Brianne: Well, I don’t get rid of them.

Rob: Maybe they’re misunderstood.

Brianne: Yeah, because we do have, we live in an old house, you know, there are spiders. I don’t get rid of the spiders when I see them because if they’re living there, they’re eating something. And I would rather that whatever they’re eating be gone. That’s my general perspective on spiders. But he’s worried about spider… Okay, this is real off topic. He is worried about spider people, which is like…

Rob: Ohhh! Spiderman? Or men, if you will? [laughing]

Brianne: Yeah. [laughs] You know, somehow it’s never made that strong of a connection. Which is definitely not because it’s under thought out or anything as a ludicrous campaign that only comes up when… It comes up more than you’d think.

Rob: Well, I think, I mean if my only data point with respect to spider-people is Spiderman, so far I’m pro spider-people. Like I don’t think they’re anything to be feared. I think they’re friendly neighborhood, you know?

Brianne: Right. Those are the words you associate. I’m going to bring that up with him. Before whenever his campaign for mayor really begins, although it may have begun already, I don’t know. So that feels important also for everybody to know about my spouse.

Rob: Yeah, I, you know what though? Run for mayor, even if that’s not even an office in your… yeah. I would love to, just as an aside, this is one more thing I’ve noticed and I think this is actually relevant: I think there’s a certain, “You must be this background, of this profession, of this XYZ in order to be in office.” And those things aren’t listed anywhere, but it’s this kind of understanding and even if we’re not explicit about it, I think at some level a lot of us internalize that and, “No, that’s not a thing I can do. That’s not a place I can be. I’m not qualified enough. I’m not…” And my little learning from going coast to coast and encountering a lot of people that frankly almostfeel this sense of entitlement to that particular position. Like, no. And that doesn’t result in good decision making, like diversity is good. More people with different abilities in office, the more voices that get heard, better decisions will be made. And if Adam wants to run…

Brianne: To bring it all back.

Rob: Yes! And if I want to run or if you want to run or if another listener is like, “I am passionate about x, I think doing x will make our community better.” Run!

Brianne: Yeah. Figure it out.

Rob: Yeah. Also something really weird, again related, but my roommate in first year lives in Waterloo, so a community a bit west of Toronto. And there was this conversation in his community about… There were a few people who I think had a mosque that they were… anyway, they were Muslim and it could have been a small building, but they just wanted to do like a little add-on kind of a thing. And a lot of people in the community got upset about that. And he was like, “This is silly. This is just people who want a place to worship in peace. And there’s a lot of weird paranoid racism going on that I’m picking up as an undercurrent behind these other objectives around “What about additional traffic and what about sewage capacity?’ No, no, no. There’s something else going on.” So he’s like, “I’m just going to run for office because I think this is…” Like he got upset enough that this prompted him to run for office. His whole strategy was, “I’m just going to knock on doors. I’m going to tell people that this is something that I’m concerned about. And I want to hear what other people are concerned about. So if indeed I do get elected, I’ll have a sense of what the community by and large kind of stands for.” Knocked on every single door. Got In. He’s now a councillor at the city of Waterloo. And I’m like, “Huh, that’s easy.” Like, it’s doable. So my friend, who I don’t think of as a politician, he’s just a guy who was my roommate and we did silly things in school. He just knocked on doors and now he’s in. And people can do this if this is something that they’re moved to do. Don’t feel like you need any special, I dunno, background or something to do it. Just knock on doors, introduce yourself and yeah.

Brianne: Be like, “Sometimes I talk slowly.” If that’s the case.

Rob: Yes. And that’s a thought, even as I’m saying this advice to people, I’m like, “Oh, Rob, yeah. This is advice to yourself.” Like honestly, if I happen to speak a little more slowly than I used to, but I still think about the future of our planet and ensuring that it’s viable for future generations as a framework to then make decisions. Yes. I want that guy in office. Like, yes. You know? Yeah. I don’t care that he doesn’t read the entire report and his friend Brianne is his official summary person.

Brianne: Well, think about that.

Rob: Yeah. I had a few… I jotted down a few scribbles just before chatting because I wanted to get a sense of. I feel like that covers a lot of what I had in mind. I don’t know if you have any other questions. One thing that I did notice, and I wonder if this has come up in previous conversations: dating, like relationship stuff when you’re not feeling say your full self.

Brianne: Yeah. So I think that’s a really good question. It’s one that I feel like would be a whole other conversation because it’s come up on the edges of things a lot and it’s not something that I’ve super gotten into with anybody but I would love to. And it’s on both sides because it’s like dating and then also people who are in committed relationships where the relationship dynamic either shifts dramatically or is nontraditional. So there’s that side. And then also dating. Gosh, what have people said? It does come up in passing. I think a lot of people are like, “Well, I avoid it during flares because I don’t know how to explain it.” Which may be your experience, but also I think it’s great that you were the other side of that, of like this person who was doing it anyway and you didn’t get it. And I think there’s a lot of like, I’m just going to say exhaustion around that, of people who are like, “The things that go into taking care of myself. The energy that I have to put into like going out and engaging with a new person and then explaining to a new person everything and figuring out when to explain it to them.” This is a good… This is another area that I think needs an intervention. Like, what can be done about this? Because it’s not… There’s that side. And then there’s this other side where people are like, depending on their condition and whether or not they expect… the prognosis basically. So if they expect their health to stay steady over time. So you might go like, “I’m chronically ill and I have really good days and I have flares. And it is unpredictable, but I expect that it will remain the same kind of unpredictable for quite a while.” I think that feels different than like, “I expect to slowly get worse.” Or “I expect to slowly get better.” And those all have a different impact. This has been my experience. Those all have a different impact on people’s approach. In terms of like, I feel like there are questions like, “Is it fair for me to get into a relationship?” Or “Is it fair to my partner?” And then also, “Is it fair for me to escalate this relationship?” And I’ve interviewed more women than men. And so as a result of that… I’m just thinking about it. I don’t think I have interviewed any men who are married, but I have interviewed women who are married, which isn’t to say that all the men who I’ve interviewed are single. They’re not, not all the men I’ve interviewed are single, but none of them are married. And one of them was like, “I don’t know about getting married because of this.” So that was a vague summary of the conversations that I’ve had with people. Because how… How is that for you? Have you been dating?

Rob: So I remember, I remember especially, so I’ll be on apps off and on kind of a thing. But the one I usually will be on if I am on an app is one called Okcupid and I think we were both on this ages ago.

Brianne: Yeah yeah. People have heard of it.

Rob: I feel like you even once, speaking of summaries, I feel like you once went over my profile and gave me tips, which is hilarious.

Brianne: That sounds like something I would do. I love online dating profiles.

Rob: Yeah, totally. It’s fun. It’s the best. Also it’s the worst.

Brianne: Oh yeah, absolutely.

Rob: So yeah, I remember, especially the first time I hit my head, thinking, “Okay this will get better next week, this will get better next week.” And so I didn’t deactivate my profile. But you know, so I would swap messages with someone and then we’d text and be like, “Oh, let’s meet up.” And then I would cancel because I’d be like, “I can’t, I don’t feel well, I’ve got a terrible headache.” And eventually I would explain it and we might still text a little while, but eventually that peters out and so then I would deactivate my profile. And it’s funny too, while the general trajectory was positive in terms of like a healing trajectory, I would have ups and downs, right? So it would vary day to day, week to week. So maybe I’m feeling well, I’ll get back on, swap some messages, and then don’t meet or eventually do meet. And boy was that exhausting to maintain a conversation.

Brianne: And like project the right interest level kind of, or enthusiasm.

Rob: Yes. And one of the things too, it’s so hard to describe. It’s one of these things where if you’ve had a concussion, maybe you can relate, but if not… sometimes I’ll have a conversation with someone and to sort of listen, to talk, to maintain eye contact, and there’s so much other input going on if you’re at a public space say, and it’s hard, it’s exhausting and your head starts to hurt, right? So you’re not putting your best self… like you’re putting who you are at that time forward, but it’s not, you know…

Brianne: It’s not who you’re used to bringing or who you would like to bring on a first date.

Rob: Exactly. Especially where you want to make a good impression. So I remember, I think it was like a full year later, having met someone and we hit it off. It was whatever… and we just had a bit of a makeout and it was nice. But it occurred to me as we were like… Actually, now that I’m thinking about it in my head, I’m like, it was really sweet. It was lovely. But in that moment I’m like, “Oh my god.” I think it dawned on me that I had a tough year, you know, and I lost a lot of confidence. So beyond the physical and the symptoms and the this and the… It affects your confidence and I do even remember thinking like, “Who would want to date me? I am damaged goods.” You know, if you have a choice between person A and person B, all other things being equal, go with the person who didn’t hit their head. And that’s an obvious like why wouldn’t you? So I think it took me a while to then get more confidence and feel a bit better about myself and as my, I think that coincided too with as I was also feeling better symptoms-wise. But yeah, that was trying. And so I didn’t date for a bit and this is, it’s funny, but like I’m noticing this all over again. Which as an aside, to add another layer to that. So I sold my place, I signed an agreement of purchase and sale. Two days later, I get in this motorcycle accident, but we still have a closing date for it. And my big plan was you’ve got a two-month closing period, that gives you time to find work and that will then determine where you live, so where you drop anchor again. But of course, month one I’m in a dark house, not reading anything, maybe listening to some podcasts and that’s it. And I’m like, “I can’t find work, there’s no way that I could start a job if I could barely spend time on a laptop.” So where am I going to live? That’s a big question mark. And so my mom was like, “Well look, stay with me for a period. And when you get better, then find a place to work. That’ll help you figure out where to live.” So on the one hand it’s like, boy am I fortunate and grateful that I have family, that if things don’t go well I can stay with. But on the other hand, I’m in my late 30s and I’m texting someone and she’s like, well, “What part of town do you live in? And let’s get together for coffee.” I’m like, “Oh, I live in my mother’s basement.” I think the first time this happened, I’m like, “Oh, maybe I just don’t have a dating profile now because this is not strong footing to… So I feel like I’m on a bit of a hiatus. At the same time though it’s interesting because I was swapping messages with one person and that came up and her response was like, I mean, I can’t say she didn’t flinch because this was a text message. But it was compassionate. It was understanding. And I’m like, “Oh, well maybe there are some people out there that think, ‘Oh, this is something that happened to you and let’s still meet.'” And it’s less important maybe in the grand scheme of things, I dunno. So I actually thought that was really interesting. And for me, we haven’t yet met, we’re still swapping messages and we’ll figure out a meet at some point. But I’m like, “Oh yeah, this reflects well, this is probably someone who’s quite compassionate and quite lovely and isn’t that something good?” And then, but then this is also weird. The weird part of my brain is like, “Okay, your red flag is you live in your mother’s basement and the fact that someone isn’t ghosting you the second you divulge that, that’s a red flag! What’s going on with you that you’re not immediately rejecting me?” Which I’m sure is silly, but…

Brianne: But like, you know, there’s a lot of cultural juice locked up in living in your parent’s basement certainly. And I would say, even to back up slightly. When you were talking about having a confidence crisis and you versus person B who has not had a concussion, that’s also the same as what you said about politicians, which is like, “Yeah, but person B could be an asshole.”

Rob: That’s true.

Brianne: So there’s that, which is to say like, okay, while you’re in the middle of something that is obviously impairing your emotional processing and your cognitive processing and your physical ability to participate, it’s difficult to build a relationship when you know that the way that you are right now isn’t static. So I think it’s understandable to be like, “Well, I’m nervous about building something with somebody, whatever that looks like, that maybe assumes that this is the status quo when, and this is true for any kind of chronic condition, I don’t know what the status quo will be.” So sometimes I think with dating one of the unspoken things, or maybe spoken, but it’s like when I am dating, I am trying to project what I think my status quo will be or like what my trajectory is. And so when you aren’t able to have confidence in that, that could be… Like, how do you convey that to somebody is a tough question that maybe we don’t have good scripts for. I think the basement one is a whole other one because there are so many different reasons that people move back in with their parents and some of them certainly do suggest that they are not in a position to be dating or starting a relationship at this time. But we have tons of biases and I think it’s hard, especially with you and your story, it’s like the judgment around sharing personal details before you meet somebody of like, well you want to share enough to give it context but you don’t want to share so much that you seem like an oversharer with bad judgment. And staying mysterious about this probably isn’t a better option.

Rob: It’s tricky to navigate how much do you share? When do you share it? I think my general approach, I like an upfront kind of a… So for example, one thing at least when it comes to the dating piece is I don’t want kids and I would much rather be super upfront about that. And fortunately the platform I’m on actually gives you an option to select that. So you’re completely transparent about it. But I feel as though my general MO is transparency. And actually now that I’m talking through this, it’s like, yeah, this is where I’m at and I’m pretty confident I’ll get better. But at the same time…

Brianne: You don’t know when.

Rob: You really don’t know. You don’t know when and you don’t know.

Brianne: Or what that wil look like.

Rob: Yeah. So, but this is me.

Brianne: Hey!

Rob: Hi! [laughs]

Brianne: And something else. Because as I have had versions of conversations about this, something else that I think is really important to remember is the same thing that you’ve already said just in a different context. You don’t know what’s going on with people. So when two healthy, employed, financially stable people are in a relationship, that doesn’t really mean that you know anything about their relationship. Or that the way that their relationship unfolds makes them somehow more qualified to love and be loved. Which I think is a lie that we can tell ourselves sometimes. You know, people who check all of the, I’ll say adulting boxes, end up in toxic relationships all the time. Anybody does, people do all the time. But I think there’s a fear if you’re like, “I need a lot of either accommodation or I need a lot of compassion or I need a lot of this right now.” There’s actually something really great about knowing that. Because a lot of people who end up in toxic relationships don’t, haven’t ever had cause maybe, to examine how they are a part of building that and what emotional accommodations they need. And when you get to be like, “I need accommodations. I’m in my late 30s. Fuck it.” You know? I don’t know. I don’t think that that’s necessarily bad, but I think that internalized ableism makes it really difficult when you think that you’re going to be the drain on the relationship or the one who needs care in the relationship. Does that make sense and/or resonate?

Rob: It does. And it’s interesting. I think your use of the phrase internalized ableism in that, yeah, that does create a bit of a bias or it creates this sense that if I find myself right now in this current state, then I must… Yeah, I’m a drain on someone. Which actually, I just did my friend’s dishes! There’s still, you know what I mean? Like there are still many ways to contribute.

Brianne: Yeah. And there are many ways that people who are by optics totally not a drain or not a drain on society or whatever, totally drain their partner. I think that the markers that we use for stuff like this, where our biases are, don’t actually map directly onto what kind of relationship you’re going to create. Or they don’t have to.

Rob: That makes sense. You know, as an aside, you are a great podcast host. [Brianne laughs] Yeah. You’re like, really insightful and I’m also like, I feel like this is part podcast interview part free therapy.

Brianne: That would be good. It sounds like a really good business model for me also.

Rob: Yeah. I mean, I don’t know how… How about this? Let’s not “How do we value this?” Does it have to be a business model? At least for me here right now I’m valuing what you’re sort of contributing and thank you.

Brianne: Thank you. I appreciate it. I in general have like… I love doing this and I love talking to people about this stuff because I think we don’t talk about it enough. And that’s one of the reasons that you get… Like whenever it is you get stuck in this, “I’m a drain on everybody. I can’t tell people about what’s going on because it’s a downer.” Like building up language and being able to just talk about this stuff. Also, you already knew that I really liked to talk about dating.

Rob: Yeah. No, that’s old news. [laughs]

Brianne: It just delights me.

Rob: Yeah. No, dating is always fun and I feel like I’m trying to remember some of our chats, but maybe they’re even beyond the initial, “This is explicit” sort of warning. So…

Brianne: Outside of the scope of this podcast.

Rob: That too That too. Let’s try and rein it in a little bit. But yeah, I’m trying to think. I was going to say though, No End In Sight, that could also apply to dating. So maybe it’s entirely within the scope.

Brianne: Yeah. Every other episode is just a dating episode. Well I did talk to you a friend of mine who is not chronically ill but who also has just gone back on the dating apps and he was talking about some of the same stuff only he went through the opposite thing of… I mean I think he wants kids or doesn’t not want kids, and he had matched with somebody who has it very explicitly in her thing that she doesn’t want kids and he just didn’t see it. And he was like, so then she immediately sends a message that’s like, “Do you want kids?!” And he was like, “It’s overwhelming, but also obviously important. If you know that you don’t want kids, it makes sense to be upfront about that.” And he’s like, “But I just forget. As you’re in your 30s, there are so many… you’re more to the point.” So.

Rob: Yeah, that makes sense.

Brianne: Okay. That’s the dating stuff. And yeah, because I usually would ask is there anything that we haven’t covered? But you did already refer to your list, so if there’s anything on there.

Rob: Yeah, I did look at my list and that was the one little note that I had, which is just interesting. But I don’t think so. I don’t think so. And I want to say thank you for having me, because as I was listening to some of your other episodes, there were some themes that resonated and I’m not sure that post-concussion syndrome can be classed as a chronic illness, but there are some parallels. And I guess, I mean for some people, even in this The Agenda episode that I mentioned earlier, there was a person that it’s been nine years that she’s been experiencing these symptoms. And so in some ways then in that case, if it doesn’t sort of resolve then it kind of is like a chronic… It’s now something you live with.

Brianne: Yeah. And I also… Thank you for talking to me! And I’ll say I’m not interested in being a gatekeeper about what is and what it isn’t, because I think when the themes resonate, then it makes sense. Because Adam’s asked me a couple of times, in terms of just thinking of people that he might send it to. The same question applies frankly for mental health. So he’s like, “Well what about people who are living with diagnosed depression or an anxiety disorder? Do you want to talk to those people?” And I’m like, “Anybody in that realm, if they opt in, if the way that I’m talking about this resonates then absolutely.” Like the place that I’ve mostly been casting my net has to do with the online communities that I’m already in. And so, especially in the first 10 episodes, there’s a lot of kind of fibro, lyme, chronic fatigue and it’s because that’s closest to my experience. And I also expect that to keep expanding as the actual podcast reaches new people. So this week I’ve talked to three… So I’ve talked to four people this week and three of them, including you, are diagnoses that I just haven’t talked to anybody before. And so to me it’s less about being like, “Well, what makes it chronic and also what makes it an illness?” And more about like what are these things that are happening that are interfering with the way that we engage the world that most people can’t see or don’t know about or understand.

Rob: Yeah. Which is I think maybe a common thread is the “can’t see” piece. And that’s the thing that, because I know I look fine and like, boy do I look fine. Right?

Rob: Your hat is also very fetching. I like your darkness hat.

Rob: Oh wow. Thank you. I should… Maybe I’ll wear it more often.

Brianne: Just make it part of your style.

Rob: Yeah. But yeah, it’s amazing because maybe that is a common thing where I look “normal” and in a lot of ways I do come across that way. And at some points it’s taking more effort to have a conversation or write something or whatever, other times less. But yeah, maybe the biggest thing I’ve learned, and I know I said this before, but you really don’t know what a person’s going through and you might not be able to read it on their face. And so to approach relationships with some compassion and some empathy, maybe even curiosity, like don’t prejudge things and ask. And by the same token, just have all that for yourself too. Big important lessons which we should have taught in school. Why is it that like… why isn’t this?

Brianne: Yeah. And in the culture.

Rob: Sure. Yeah.

Brianne: It’s not… Like the idea of don’t judge someone until you’ve walked a mile in their shoes is certainly in the culture. But the actual examples of these kinds of experiences are not present in the culture. And I think we need the examples in order to build empathy.

Rob: And kudos then to you for starting this podcast. Maybe a good step towards that end. I’ve certainly been enjoying it, so thank you.

[guitar riff]

Thank you for listening to episode 17 of No End In Sight! In the next episode I’ll be talking to a woman with ankylosing spondylitis. Make sure you subscribe on iTunes or Stitcher or wherever you get your podcasts to find out when new episodes are released.

If these stories are resonating with you then I’d love to hear your story! I’ve been talking to a lot of straight cis white women, so I’d particularly love to hear from other perspectives. To learn more, just head to noendinsight.co and click “Share Your Story.” 

If you want updates about the show and to hear my favorite quotes while I’m working on transcripts, follow me on twitter @bennessb and check out @no.end.in.sight.pod on instagram.

And don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s pretty small right now, but I’d love it to become a place where we share resources about building a business while prioritizing our health.

And finally:

This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I’m slowly working on my winter patterns, and I’d love it if you checked us out at digitalartisanal.com