Bill Monroe on getting better (and not getting best)

Angela Santillo
Oct 29 · 23 min read

This is a transcript of episode 10 of And Then Suddenly, the podcast about unexpected moments that turn our lives upside down.

Originally released on November 6, 2018, this transcript is being posted today in honor of World Stroke Day.


Angela Santillo
It’s faster than a supercomputer. It can generate about 20 watts of power, which is strong enough to light an LED light bulb. And no one knows for sure, but scientists believe it holds about 86 billion cells. Isaac Asimov said it is the most complicated organization of matter that we know. So, let’s talk about it. Let’s talk about the brain.

Angela Santillo
This is And Then Suddenly, the podcast about the expected moments that turn our lives upside down. I’m Angela Santillo. Now I have mentioned in previous episodes that when I talk to my guests, I don’t want to know about what moment they’re going to share because I have this theory that we have clichés about big life moments and I’d rather be surprised and then have an impromptu and hopefully truthful conversation about that moment. And what that means is I have to conduct a lot of interviews in order to sequence the episodes because I want each episode to range in topic and in person and personality. But for the first time, I interviewed two gentlemen who talked about neuroscience in very similar and yet different ways. So, I decided I’m going to do a brain doubleheader. And there’s going to be two back to back episodes about- well, yeah, the brain. So, welcome.

My first guest is Bill Monroe. Now he is a corporate trainer, a product evangelist, and he’s worked for some of the world’s biggest companies like Toshiba and Microsoft. Now, I found Bill because I posted to a podcast group on Facebook that I was looking for guests to share one moment that you know, changed their lives. And Bill emailed me and he said, “In 2017, I had a stroke.” And I thought, “Oh, I don’t want to know anymore.” So, I didn’t read anything else. But what I noticed is he included a link to his podcast, which is called Strokecast. And the tagline for that show is, “A Gen X stroke survivor explores rehab recovery, the frontiers of neuroscience, and peeling a banana one handed.” Which is an amazing tagline first of all, but I was also very struck that here he said he had his event in 2017 and here he already had a podcast.

And I knew I had to talk to him because I’ve mentioned my “and then suddenly moment” was getting misdiagnosed for appendicitis, it ruptured, stayed open for four days, I was insanely septic, and I almost kicked the bucket. And I really thought at the end of all of that, I was going to write a Pulitzer Prize winning play. That I was a playwright and I was going to leave that hospital and write something like- I was going to write the greatest opus ever because I had gone through something and like there’s no way I can’t create amazing art using that. Not only did I not create an amazing opus, I was incapable of writing really for a few years and the only thing I wanted to do is act out. And I acted out in healthy ways if you call a huge crocheting problem healthy, but I became obsessed with different hobbies. I became obsessed with running and cooking random recipes and crocheting and jumping on buses and going to the end of the line just to see where I ended up and visiting cities for a couple hours and then coming home. I mean, I was very, very lost and I was clearly searching for something, never found it but I was- I was not a productive mess but I was some kind of mess that wasn’t terribly messy. But when I encounter people who go through an emergency, like I said, an accident or medical experience, and relatively quickly they’re able to be articulate and thoughtful and share their experience with the public in any way, I find them to be miraculous and in some ways, I find them to be like superheroes. So, when Bill contacted me, I knew I had to interview him, and he did not disappoint.

Bill Monroe
The moment that turned my life upside down was June 3rd, 2017 at 7am. It’s interesting getting to be that precise, but I woke up that Saturday morning to use the bathroom. And I’m glad I was well hydrated the night before because once I woke up, my left arm felt a little funny. It felt like maybe I had slept on it wrong, or something like that. So, I didn’t think too much of it. But I got up and gradually, the arm started responding less and less, you know, I couldn’t really lift it or bend it very much or it took a lot of effort. And then my left leg started to fail, started to go offline. And I realized that this is not good. I took a look at myself in the mirror and I saw my face was starting to droop on one side. And these were sort of classic signs and I thought, “I think I might be having a stroke.” And at 46 it had never occurred to me that that was something I would have to deal with.

So, I stumbled back to the bedroom, woke up my girlfriend to ask her if she could understand the things that I was saying. So, starting to slur my words a little bit. And she promptly called the ambulance, told 911 she thought I was having a stroke. And a few minutes later that paramedics were there as I sat on my bedroom floor thinking about, you know, just what the heck is going on and what do I do next. And they took me to the hospital from the ambulance bay, they paused briefly in the- just inside the doors to put in a couple of IVs and put a-you know, that ubiquitous hospital bracelet around my wrist. And then it was straight into a CT scan to try and figure out what was going on and then back to sort of an emergency room which is little private rooms, little small individual rooms, which was nice. And a couple hours later, off to an MRI and that’s where they had the actual confirmation. I had broken my basal ganglia, I had a blood clot that formed in my right middle cerebral artery. I basically starved those cells. So, they died off. And I continue to lose function until I bottomed out at about 3:30 that afternoon. And from there on- and it was focusing on recovery and rehab and trying to get better and I spent that next month living in the hospital.

Angela Santillo
So it was 30 days in the hospital and then you were released?

Bill Monroe
Yeah, yeah, it’s basically what it was. You know, I rolled in on June 3rd and went home on July 1st. So, for the first three days or so I was on the acute neuro floor where they’re more focused on making sure that there isn’t another stroke. Let’s get you back into some basic shape and figure out just what’s going on. And then it was they moved me up a floor to the inpatient rehab floor. And that’s where I was getting three hours of physical therapy and occupational therapy every day. Going out and working with the therapist to, you know, just sort of start doing things and re-learning everything from how to walk to how to get dressed, to you know, how to get to the bathroom. And just all of that figuring out okay, now how do I eat? You know, when you’re- you’re down to one hand. They did the all the tests where you actually have to go in and actually do a specific test to make sure you still know how to swallow, or they have to change the foods and give you special liquids. There’s, you know, all sorts of other assessments.

And I consider myself really lucky, and especially as I get to know more and more stroke survivors, because my deficits that I had at the time and, you know, they’re less today, but it’s still just purely physical deficits. So I lost, you know for a time, use the left leg all together and the left arm all together, but I didn’t have any speech deficits other than some physical ones where, you know, it was just tough to speak for the first week or so because my face was still drooping. And it felt like for basically that month that the entire left side of my face was filled with way too much Novocain, and I had already been a podcast or a speaker before that. So, I know noticed it more than you know, for the next six months or so. Other people thought my speech was perfectly fine. But, you know, the more you use an instrument, the more you become attune to it and I could sense that.

But in for my case, I did not have to deal with aphasia, which is a language processing challenge that comes from stroke. Where you lose the ability to speak because you lose the ability to translate thoughts into vocabulary, into physical movements. And I didn’t have the cognitive deficits some other folks have. And fortunately, I was never athletic to begin with. So what I like to say to folks now is that, you know, if your company wants to hire me to be on your softball team, I’ll probably be about as effective at it now at now as I was before the stroke. But yeah, and that whole thing started this whole other journey of figuring out how I can learn more about stroke, and how I can learn more about the brain, and ultimately how I can help other folks go through their own recovery. I have learned way more about neurology and neuroplasticity than any marketing guy should ever have to know.

Angela Santillo
I remember when you contacted me, I remember seeing the date. And the thing that struck me was, I was so amazed that you had already had a podcast. That I think you’re what, like 33 episodes into?

Bill Monroe
Yes, yes.

Angela Santillo
Cause it’s just over a year. So, when did you decide to- I mean, it sounds like after this happened, you had an interest in learning as much as you could about it because you were living it. When did you decide you wanted to share that with the public?

Bill Monroe
Pretty early on. I was all- I already had an existing podcast called Two Minute Talk Tips, where I help people become more effective public speakers. And so once the stroke happened, my natural inclination was to go ahead and start another show, talk about it. But you know why I really started sharing with the public and what was really helpful for me was sharing my story on Facebook, you know, the people I’m connected with and getting that kind of response. And that kind of support really helped me understand that not only do I not know a lot about this stuff, a lot of other folks don’t know the details either. And it’s helpful to know that. The other thing is that I was already a big fan. I’ve been listening to podcasts since my original iPod, way back in the day, and-

Angela Santillo
The one that has the driver’s wheel in the middle?

Bill Monroe
Oh yeah, there’s a click wheel on that.

Angela Santillo
I still have it. It’s going to last me through the apocalypse.

Bill Monroe
Absolutely, it was awesome with that monochrome screen and-

Angela Santillo
Oh, yeah.

Bill Monroe
Getting all that stuff to work. But, so I started looking for more podcasts because among other things, I didn’t have my laptop in the hospital, because I didn’t want to keep track of it. And physically reading a book is hard to do when you only have one hand because you have to- you can’t turn a page while holding your book open. So, you have to manage that. So, I started looking for more podcasts. And they really weren’t very many podcasts out there about stroke. There were a couple of good ones, the one out of Australia called Enable A. There’s one out of Vienna, Virginia called The Slow Road to Better. There’s another one called The Hand in Hand show, but there just weren’t a ton from a survivor’s perspective. And I think in part that’s because of the demographics. A lot of the- well more and more young folks are having strokes these days, it’s still seen as something that happens mainly to an older demographic that is probably less likely to start a podcast then folks with some of the other neuro conditions that are out there. And there’s a perception that it’s something that only happens to old people. And then, you know, it’s completely wrong. But I think that influences that, but there just wasn’t a ton out there. So, I was like, “Oh, let’s go ahead and make my own.”

Angela Santillo
Interesting. So, did you know anything about strokes before it happened?

Bill Monroe
I knew a little bit. There was, I’m gonna say it was like 2005 or so, give or take a couple of years. There was a viral video that went around of a news reporter who was doing a remote broadcast and she had a stroke on the air. And, you know, you saw it happening in her face and she lost her language and then fell. So that was one of the things that was going through my mind as it started happening to me. You know, I had a grandmother who’d had a stroke in the 70s. But it wasn’t something I was living with all that much with that much awareness. It was, you know, just sort of those classic signs of stroke, it just sort of permeated my subconscious at some point that I was able to recognize it as it was happening.

Angela Santillo
They hadn’t been aware- I mean, you’re talking about how yours affected your mobility and how it didn’t present a problem with language for you. But I really wasn’t aware that you are totally conscious during it. That you could be living in a body that was starting to malfunction and watching everyone around you and not being able to do anything. That’s crazy.

Bill Monroe
Yeah, it really is. And one of the things the problems with mine was that I woke up with symptoms. And so at the hospital, they couldn’t do anything to treat it. If you get to the hospital fast enough with the right kind of stroke, there’s special drugs they can use now to bust up clots. Where they can actually manually go in and retrieve a clot. But I woke up with symptoms, so you couldn’t do that. But when I talked to other survivors, that story is common for most folks. They actually see it happening and they know that this is happening. One of the more popular books by a stroke survivor is a book called My Stroke of Insight by Dr. Jill Bolte Taylor. She also has one of the most popular TED Talks ever. It’s in their top 10 on their website. And she was actually a neurologist who had a stroke and she was watching it while it happened. And she talks about this description because she ended up having all sorts of cognitive issues as well. And just this gradual decline in her abilities not only was her body failing, but she knew she needed to go ahead and call for help but she was forgetting what the phone was and how to how to use the phone.

Angela Santillo
Oh my gosh.

Bill Monroe
The impact it has really depends on exactly what part of your brain is dying in this process. In my case, there was no pain. Other folks will have serious pain especially- sort of described as the worst headache if your entire life and that’s actually one of those magic phrases that will get you at the top of the list at the ER triage. And usually that’s because the blood vessel has burst in the brain. But yeah, those things can happen and some people are dealing with it over a couple of days and they just sort of feel just this increasing fog, other folks can just- you just have this whole sense of being locked in and the experiences are frightening and varied. And in my case, I ended up just shutting down emotionally altogether, which is probably the best thing I can do that day.

Angela Santillo
It sounds like this kind of recovery every small achievement takes all your focus. So, with all this support that you had when you left the hospital, how did you feel about having to re-encounter your life?

Bill Monroe
Yeah, you know, it’s really interesting because the first day back and it’s like, that is really just a huge, “What now?” What do I do as I’m sitting there on the couch for the first time in a month? And just like, this is life now so where do we go from here? And that was very strange. Those first couple of days that was a little more nerve wracking, but after that, you just start- you know, I just found myself so busy with appointments and just doing all these other things and just sort of managing that. But I was able to, you know, sort of distract myself as I try and build a new life because at the same time, the other challenge I was working with was, this happened in June. The September before I had been laid off from my job. So, I was unemployed when this happened making the COBRA insurance payments I was paying out of pocket the best investment of 2017.

Angela Santillo
Wow.

Bill Monroe
But, yeah, so it was like, “Okay, so I’ll got a plan. Okay, I’m home. I’m just not going to try and do anything for the next six weeks except try and focus on my recovery. And then after that I can start looking for work again.”

Angela Santillo
Were you able to find work with all of this?

Bill Monroe
I’ve had a few freelance opportunities and some gigs, but I haven’t actually found full-time employment yet. So, I’m still looking for that and I’m still looking for other freelance opportunities. In the meantime, what can I do? What can I pick up? How can I leverage what I do in the podcast? The reason I started my first podcast was after I got laid off, I wanted to be able to say, okay, if somebody asked me in a job interview, what have you been doing since you left your last job, I wanted to say, “Well, yes, I started this program, I learned these skills. So, I could start giving back and sort of make everybody’s PowerPoint presentations just a little bit better.” I had focus on that, so I had something to do. And then, you know, since then it’s been picking up projects here and there and, and just trying to expand these skills and figure, “Okay, so I’ve had this experience now. Now, what can I do with it?”

Angela Santillo
And where are you now with your recovery?

Bill Monroe
Recovery still is still going. I’m done with PT and OT, until probably next spring. I can walk with a cane and an ankle brace because my foot keeps wanting to drop and bend the ankle and I need to, you know, keep it sort of at that right ankle while I walk around. So, I walk probably about a third the speed that I used to walk. And so that’s, that’s come along fairly well. My arm is coming back fairly well, I still don’t have much practical use of my hand. I can grip things generally, but I can’t release my fingers. So, I can make a fist but I can’t open a fist yet. So, I can sometimes carry stuff in that hand. But yeah, it’s about continuing to work through that and stretch things out. I mean, even as I’m sitting here, just subconsciously now one of the things I keep doing is opening up my left hand with my right to sort of keep the flexibility in those fingers and fight off that tone and that spasticity. And I just want to continue to do that while I’ve got, you know, my assortment of extra medications that I have to take now to sort of make sure this doesn’t happen again.

And there’s been all sorts of things along the process. I’ve gotten to have the scan of my heart to figure out if a hole in my heart was causing issues. Because about one third of the population has a hole in their heart, that can lead to clots and just dealing with all these other things. But in terms of what I’m doing practically in my life, I can get around, I can drive with a couple of minor modifications to the car so I can operate my turn signal with my right hand. I can type 30 words a minute now one handed, and just looking at, you know what I can do one handed, while at the same time trying to bring my left hand to the party in any way that I possibly can.

Angela Santillo
You were talking about how you started your first podcast after you got laid off. And then- I mean, it sounds like, and I don’t know if this is a true statement, but that you’re pretty- I don’t want to say resilient I mean, clearly you are. But that you are a doer against adversity. Is that true? Do you tend to try to make something when doors shut? You make something new and you don’t want to just wait for another opportunity, you make them?

Bill Monroe
Absolutely, absolutely. And that’s one of the things I really like about technology. It used to be you had to wait for somebody to give you permission to start a show or go do something. And now what I tell folks, in public speaking especially, is that you don’t have to wait for somebody to give you a stage. You can go out and make your own stage, you can go out and just create things and just go do things. Because, you know, I mean, yeah, you can wait for things to come to you. But I’m not one to just want to wait, I want to go ahead and let’s go find it. Let’s go make it easy, you know if the universe is going to bring good things to me, I want to help the universe bring good things to me. I want to go out and make that possible. I like the idea that luck is definitional. Luck is where preparation meets opportunity, and I’m going to do what I can to prepare and to help be available to those opportunities and that’s not going to happen if I’m just sitting on my couch watching People’s Court all day.

Angela Santillo
Well, it definitely sounds like that characteristic has been a huge benefit to encountering the what after, after this event. How would you say you’ve changed since the event? Like what have you noticed so far with any big shifts?

Bill Monroe
That’s an interesting question. I think, a couple of things. Number one, I lost about twenty pounds while I was in the hospital, which was definitely needed, although I don’t recommend that diet. I think I’m more aware of the challenges that folks face out there- a little more open to the different kinds of struggles that people have, and there’s been a lot of really interesting things in that respect. I think- and this is where we start getting to some more of those discussions where I kind of intellectually understood the idea of what we are talking about when we talk about white privilege or male privilege. And now as I’m encountering and starting to look at the other side of the sort of an ablest privilege that I don’t have anymore and living life with disabilities really opens you up to thinking about things that. You know, I’ve never had to think about that before and looking at the world in a way that I’ve never had to look at before and dealing with people who don’t have to think about the world in the same way that I do. And they’re not bad people for not thinking about the world in the same way. It’s just not been part of their experience. So, I mean, that has been kind of eye opening for me to start looking at the world through some of those different eyes and some of those different interpretations and those different ways of focusing on reality.

That and of course, I’ve had to learn so much more about the brain and about all of this stuff and rethink you know, the idea of just how the brain works and it’s not a simple command and control thing. You know, we think of the brain as a computer running our body but it’s not. It’s the internet. Iit’s all sorts of different zones of the brain that do different things and that chime in and that are constantly in a negotiation with one another about getting stuff done and making stuff happen. And you know, the strong intellectual components, the strong emotional components, these thought processes that- what is a thought? You can’t have thought without language and all these different parts have to negotiate with one another to figure that out. And you know, parts of the brain troll the rest of it. You know, we start talking about our inner critic and imposter syndrome and all that. And trying to balance that out and figuring out how do you make all of that stuff work.

Angela Santillo
I have a question because you said earlier that you vaguely knew about strokes through like that YouTube clip and a vague knowledge of your grandmother having one when you were little. Now that you know so much about the brain, what are the three things you think everyone should be aware when it comes to strokes?

Bill Monroe
First of all, everyone needs to know B.E. F.A.S.T.. Those are the things to spot in a stroke. B is for balance. If your balance starts to go off weirdly, especially the one side, that’s a concern. The E for eyes or vision. If you suddenly have your vision fail, that is a potential thing and vision failures can be interesting. It can be just, you know, one eye or the left view from both eyes for example. F is for face in their facial drooping. A is for arms. Do you have arm weakness, especially on one side? S is for speech. Is your speech slurred? And the T is for time because time is absolutely so critical. Get to the ER, get to 911, get that action starting. Don’t drive yourself to the ER, things can continually get worse and don’t have somebody else drive you. Call an ambulance because treatment start in the ambulance. So, first and foremost, B.E. F.A.S.T. know that. That’s probably the most important takeaway.

Second is that if this does happen, it’s not the end of life. It’s you know, assuming you survive it. It’s the beginning of a different way of living. It’s the beginning of a different aspect of life and you can do things and you can re-approach how you’re doing things. And you have to go ahead and take that approach that, “Okay, so what do I do now? How do I get through this? And how do I go ahead and connect with folks and what other resources can I do and where is their help that I can go for? How do I go out and connect with other people?” Because getting out and connecting with other people online or in the real world is so important because one third of stroke survivors end up dealing with depression, which then of course, compounds itself and medication. And people tend to you know, when you take your medication- you know how alcoholism, drug addiction, and incredibly high divorce rates post stroke. So, you got to deal with that, got to deal with those issues, and gotta get that taken care of.

And the other big thing is that the idea of neuroplasticity, because this is- neuroplasticity is how the brain rewires itself. It’s why I can now start to walk. It’s why I can do stuff with that arm because those brain cells that control that, they’re all dead. They’re not coming back. Neuroplasticity means the brain has been able to go ahead and rewire itself, grow new nerve cells, and reallocate other nerve cells to start building this functionality. The functionality that you focus on is what the brain is going to make sure it does. The common quote is that nerves that fire together, wire together. The more you do an action, the easier that action becomes. And it’s not just in terms of stroke recovery, but that’s just how the brain works in general. The things we spend the most time on, the things we spend the most mental resources on, those are the things the brain is going to go ahead and wire for. That is going to make it easier to do those things again, and again, and again. And neuroplasticity, it’s not just a positive thing, it is a neutral thing. Tt is a mechanism. So if we focus on negative patterns and doing things that are not good for us, the brain is going to wire to make it more likely will do more of those things and to get easier to do those things and that’s not necessarily the healthiest thing to do. So, it’s about focusing on the outcomes that we want, the things that we want to achieve, where we want to go, and the habits that are going to get us there. Let’s make sure that you are encouraging the right nerves to wire together.

Angela Santillo
I love that. It makes me want to definitely go to the gym after this interview.

Bill Monroe
Exactly.

Angela Santillo
And that’s a habit I need to work better at rewiring at the moment.

Bill Monroe
Absolutely. And that’s why after six months of regular gym practice, people love going to the gym.

Angela Santillo
Yeah, until you fade off. I faded off for the last month and a half and I’m like, “I can’t do it again.”

Bill Monroe
Exactly, exactly.

Angela Santillo
Well, I’m super curious about one last thing. So, you just had your first-year anniversary of this happening. What did you do that day?

Bill Monroe
That day, I basically took a walk around the neighborhood. I went out, hung out in the coffee shop for a while. Hung out in the local park up here, caught some Pokémon, and then spent a couple of hours at a big bookstore. And just sort of quietly doing the things that I love doing. And just sort of contemplating this and thinking about it and thinking back to how far I’ve come. You know, when I look at where I- the things I can do today, so much better than the things I could do a year ago. And so, I spent the day just sort of thinking quietly about a lot of that stuff as I just sort of explored and tried to have as normal, quote unquote normal a day as I could.

Angela Santillo
I love that you were playing Pokémon.

Bill Monroe
You know, actually one of the- one of the things I do on the podcast is I generally have a hack of the week. Just a tip for living life with disabilities. And Pokémon Go is one of those because sometimes we just need an excuse to go out and take a walk. We know we’re supposed to go through the exercise but who wants to walk around the block? It’s a whole other thing when you’re out there trying to catch a Lapras.

Angela Santillo
Now, last week on October 29, it was World Stroke Day. So, I just missed it by week. But according to the World Stroke Campaign, every two seconds somewhere, someone in the world is having a stroke. And of course, if you want to learn more about strokes please go to Bill’s podcast, Strokecast. I asked him to recommend me some episodes, like which ones were his favorite. And one of them was Episode 28. And he was chatting with the folks from The Slow Road to Better podcast and they are all dealing with aphasia or recovering from aphasia. And I cannot recommend this episode highly enough. I have not been able to stop thinking about it since I heard it. So, I highly, highly recommend checking out Episode 28. And I asked Bill, at the end of our conversation, did he have anything he wanted to add. And this is what he said.

Bill Monroe
I would want to add is the idea of don’t get best, get better. We talk a lot about trying to be the best and be the best at this. You have to be the best. Problem is in order to be the best that means everybody around you has to be worse than you. And I don’t find it particularly motivating to drive other people to failure. You know, when your success is contingent on someone else’s failure, then you’re not going to be inclined to help folks. Instead, all we can do is instead of trying to be the best and achieve that one goal, focus instead on being a little bit better every day. Regardless of what it is, whatever skill it is you’re trying to improve, whether that’s everything from learning to walk again, to being a more effective speaker, to being better at starting things and drawing and whatnot. Just try to be a little bit better every day because if you get a little bit better every day, you are going to be awesome.

Angela Santillo
And that wraps up my special brain doubleheader. For more on neuroscience, tune in next week. Thank you so much for listening. If you want to find me, you can find and then suddenly podcast on Instagram and Facebook. Check out my website andthensuddenlypodcast.com. On the show notes for this episode, I will include a link for Bill’s podcast and that’s episode 28 I talked about earlier. If you want to share this with your friends, that would be great. If you want to rate me on iTunes even better. Go ahead and do that and I will see you guys next week. Have a good one.

Angela Santillo

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Writer | Corporate Storyteller | Host of the And Then Suddenly podcast

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