Emily Hoffman is recovering from a carotid artery dissection which caused a stroke in early 2019. She had now started to set some walking goals and is making great progress every day.
03:24 The Signs of stroke
09:38 Stroke caused by Carotid Artery Dissection
13:44 My Stroke of Insight
23:19 Stroke recovery timeline
32:57 Proprioception issues
41:12 The stroke carer
44:36 Recovery awareness
53:14 Taking responsibility for your own recovery
Are you aware of how you’ve taken your recovery? And you’re doing this physical part, you’re doing this cognitive part where you talk about your goals, your process, and then you do this other part, which is in pictures and in images. And to the point where you’ve got the Emily Strikes Back on your T-shirt, are you aware of like how imagery is important in supporting recovery as well as the words and the actions?
Absolutely. The reason why he started the Instagram page was so I could look back at my progress so that when at the end of the day, when he came from after work and was reading me to sleep at night, and he said, What did you do today? How was your day? And I would say, Well, I did this thing when I couldn’t do this, and I couldn’t do this. And the keyword is always yet I couldn’t do this thing yet.
This is the recovery after stroke podcast with Bill Gasiamis. Helping you navigate recovery after stroke.
Bill from recoveryafterstroke.com This is Episode 112 and my guest today is Emily Hoffman. Emily experienced a stroke caused by a carotid artery dissection in May of 2019 and has been on the road to recovery ever since.
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To find out more simply go to recoveryafterstroke.com/coaching. And now it’s on the show. Emily Hoffman, welcome to the podcast.
Thank you, Bill. I am honored to be here.
Thank you for being here. It’s so good to have you here. All the way from New York, New York,
Brooklyn, New York. Not bad.
Do you live near a place called Clifton Hills or Clifton Hill?
We live in a neighborhood called Clinton Hill. Close, you’re very close.
When I read that, I thought it was Clifton Hill, because there’s a Clifton Hill near my place. And I thought, well, we both live near Clifton Hill.
We actually live in Australia in Clifton Hill. fooled you. Haha.
Hey, Emily, tell us a little bit about what happened to you.
The Signs of stroke
I was at work one day on Friday, May 10, 2019. I don’t know what the date is Friday, May 10, 2019. I had started a new job and I was literally on the third day of my onboarding. I started the new job on Tuesday, the seventh on Friday the 10th I was at work doing an onboarding course I started to get a horrible migraine.
And I have had migraines since I was a kid since I was about six years old. It was another migraine-like any other I texted Matt, I said I’m going home from work early. I have a horrible headache. And he said, Do you want me to come home early from work and look after you? I was like, What are you talking about? It’s a migraine.
You see me have a million of them. I’m going to go to bed. I’m going to take my medicine. I’m going to go to bed. I’m going to go to sleep, turn the air conditioning on. I’m going to sleep the rest of it. What are you going to do sit next to me in the bed and like brush my hair off my face?
That’d be romantic though.
Yeah. So I said don’t be silly. He had plans to go out with his cousin that night. I said go out. Have fun. Go to the show. Have a good time. I left work at about two o’clock I took the train home. I got home at about four o’clock I walked home. So no stroke yet. Other than the headache, I was totally fine. Everything worked normally.
This is the this is a gross part. We’ve already talked gross things but it gets grosser, when i get migraines I throw up. So I have a designated puke bowl, and I took my puke bowl into the bedroom and went to sleep. That was the end of it I went to sleep and managed to fill the puke bowl in the interim, woke up sometime around six o’clock I think I don’t remember looking at the clock but my memory of what it looked like light wise outside it was about six o’clock pm.
So I’ve been home for a couple of hours, looked at the bowl and said oh, that’s disgusting. I can’t possibly have Matt come home and find me in bed with a bowl full of puke next to me. That’s awful. So I got up I carried the bowl to the bathroom, still no stroke carried the bowl to the bathroom, dumped it flush it went back to bed.
And next thing I know he got home from the show with his cousin like 1 am I think something like that. Tried to wake me up. And I had been I guess continuing to throw up while I was asleep and when I get migraines I also go into like a cold sweat. I was drenched and had been throwing and you woke me up like clearly that’s not normal.
That’s not a normal thing. You don’t find somebody asleep in bed with vomit in a cold sweat. It’s disgusting. I’m sorry. Sorry listeners. That’s disgusting. He woke me up and his cousin luckily he worked in hospitals. So he saw me and he said, something’s not right. You gotta call 911 they call 911.
He sat me up to get dressed, I sat up and I reached forward with my arm to grab my leg to help him help me get dressed, couldn’t reach my leg, my whole left side was totally loose. And that was when he knew something is very wrong here, the ambulance came the EMTs put me on the stretcher, wheeled me out to the lobby of our building.
And there’s like four stairs to go down. I remembered being wheeled through our living room. We have two cats and I just cleaned out their litter boxes. I didn’t throw the bag full of litter away. And I remember being wheeled through the living room and thinking, Oh, this is disgusting. There’s a bag full of dirty cat litter on the floor. I can’t believe there are people in my home and I left that here. That’s disgusting.
This is what I remember. And I remember going to clunk, clunk clunk down the stairs in the lobby. And being in the ambulance, there’s a highway in New York the FDR, the Franklin Delano Roosevelt highway that takes you up the East Side of Manhattan Island. And it’s very bumpy it’s notoriously bumpy. And it was so bumpy that I remember waking up and asking Matt are they doing a CT in the ambulance I thought it was in like a like an ambulance with a CT because it was so bumpy.
And next thing I remember is waking up in the hospital bed a couple of days later. With a horrible, horrible headache again, they had shaved my head. And because there was so much swelling in my brain, I got a Hemicraniectomy that took up the right side of my skull. And I had obviously when they mess with your skull, you’re going to get a little bit of a headache.
So I had a horrible, horrible headache all over again. And I remember, I woke up and it was not one of those moments like in a movie where you wake up and go, why am I what am I doing here? How did I get here? There’s nothing like I wish it was dramatic and interesting like that.
I woke up and that was it. And I was in the hospital bed and there was people around me and I had a horrible bandage around my head and my hair. I had just finished growing my hair out from having short hair the year before, my hair was finally long again. And I was so excited that it was finally long again. Then they shaved it all off. And now I’m stuck with this thing now.
And that’s probably not the worst thing you’re stuck with.
No, it’s not the worst thing I’m stuck with if I have to choose the hair is good. And I was in acute rehab for the first two months and then I was from acute rehab. I went to subacute. And the subacute rehab was the next step before going home. So I had two months in acute and then another two months in subacute. So this all happened in May I came home September 18, 2019. So I’m approaching the year of being home the year mark of being home.
Wow. What was the underlying cause of the stroke?
Stroke caused by Carotid Artery Dissection
It was a carotid dissection or right side of carotid dissection. But it was interesting. I listened to the other episode of the other woman who had a carotid dissection also months ago, and I was really interesting to hear that somebody else I had because you know, I’ve speak with lots of stroke survivors. The Instagram page has put us in touch with other people. She was the first person I heard of who also had a carotid dissection?
Yeah, I think that was who was that?
I forgott Marcy. Maybe.
Yes. Marcia Moran. That’s the one.
Yeah. So that is quite common. I met people who have had carotid artery dissections nice down low in their neck. And as a result of that, that’s caused stroke. And that person who’s one of my son’s friends had surgery to repair both carotid arteries.
Luckily, I did not have that. That’s awful. That’s even worse.
Yeah, on each side, but he didn’t actually end up having the kind of strike that you had because it somehow didn’t get to his brain that dramatically. It didn’t cause a problem up there that dramatically so he was up and about and doing really well, quite quickly. So it’s not uncommon. But what’s fascinating to me is the amount of different ways people can get to have an experience with a stroke.
That just completely blows me away. Because if I’ve ever heard of somebody having a stroke, it’s always been an ischemic stroke. And very rarely did I hear about people experiencing brain hemorrhages. And then very rare that I hear about people having a stroke due to a hole in the heart, which is called the Patent Foramen Ovale, which creates incorrect blood flow and then that causes a stroke. It’s just so many many different ways that people get there. So you wake up in the hospital and it’s not a dramatic awakening, but Matt’s around. Are you wondering at least like what happened like how did I get here?
I honestly don’t remember that moment whatsoever. I remember that my sister lives in Spain. My sisters in Spain. My mother goes once a year. for about a month or two to spend the summer with my sister in Spain, and my mother was this was the month that my mother was in Spain with my sister. I vaguely remember my sister was there when I woke up.
I vaguely remember being on the phone with my mother while she was in Spain, and her saying, Well, I’m coming home and I said, Don’t come home. It’s just a stroke. I’m not dead. It’s fine. It’s just a stroke. I’m not dead. And she told me that I did that but even before she told me I have really this very vague memory of doing that. saying, I’m not dead. It’s just a stroke. Fine, so you don’t have to come home.
How did the conversation with Matt go?
I don’t remember it was just kind of it just sort of like there was never a conversation about it. What are you going to have a conversation about? Well, what do we do now he just kind of swooped in and just kind of took control the situation, kind of saw what needed to be done and started doing it.
Yeah, that’s common. I mean, and I can relate to that because we, Christine and I, we didn’t speak about anything, either. It was kind of, okay. This is happening or this is what I need to do today, I need to go pick up the kids need to go do the shopping, and it go see my mum and dad.
And I’ll come back and see you in a little while. And then she’ll come back and see me then she had to go to work and life just went on. And there was this little bit of added complexity that we didn’t know how it was going to unfold. And she basically did exactly what Matt did. She just kept going and kept doing whatever he needed to be done.
My Stroke of Insight
He somehow managed to continue working full time and be with me every day at the hospital. And the entire time I was in the hospital. He was there every single day. When I was in the acute rehab He would come after work every day stay there until 11 or 12 o’clock you would read to me. As I went to bed he would read to me we read my stroke of insight.
Jill Bolte Taylor.
Yes, so good. So good.
Amazing book, one of my favorite books. I’ve tried to get her on the show. I’ve tried so many times. It’s so hard.
I’m sure. A friend of mine actually a former coworker of mine just had a stroke last week. I got her a copy of it.
Yeah, It’s one of the best books because it gives that insight from a neuroscientists perspective, as well as a stroke survivors perspective and they come together and she’s our voices how I sort of describe it in that she gives the medical people an unbelievable understanding in a medical kind of way. What stroke survivors go through and we don’t have that often.
I was almost a little jealous of her experience. I was like, I want to know, the way she described the filing cabinet getting washed away, and it just being out of reach. I was like, I want to know what that was like, why didn’t I get to I just went to sleep and woke up. I got cheated.
Yeah, she had like a LSD moment there. It sounds like yeah, it’s describing a more of a kind of out of body experience with her having an awareness of what was going wrong with her brain at the same time that it was going wrong. And also not knowing a lot of the things that were going wrong. But having this awareness, which is just so strange, bizarre, and beautiful, and amazing, and horrible, and terrific, all at the same time.
Exactly. Exactly. That’s the experience. Horrible and terrific. That’s a perfect way to sum it up. It’s horrible and terrific. Yeah. It’s horrible that this is all happening to any of us. But it’s terrific that we survived it, though. You know, many people don’t survive this. But we survived it for whatever reason, and we keep going and we make the best of it.
Yeah. What was it like when you started to get beyond the first few weeks of recovery and realized, there’s certain things you can’t do? How did that affect your psychology?
That’s exactly what my friend asked me the other day when I went to see her on Friday. That’s the exact question. She’s struggling right now. She said, How are you doing psychologically? It’s not an easy thing. As somebody, I’m a personal trainer. My life is my body and being fit and sporty. Not that people’s lives aren’t their bodies outside of personal trainers, but no, my career is my body.
I have to be fit, I have to be strong, and I’m used to being fit and strong. And all of a sudden, I’m not able to do the stuff that I was used to doing and that’s been a strange experience is like trying to figure out if I can’t do that stuff, then what am I? Who am I? And how do I get strong in a different way? If I can’t do those workouts, what can I do to be strong?
Like what is the driving force? That’s kind of what I had to realize, what is the driving force behind who I am, let’s say as a trainer, as an athlete. And the whole point was always to be the best version of what I always tell my clients is I’m going to teach you to be the best version of yourself that you’re able to be. So I got to teach myself to be the best version of myself that I can be. That doesn’t mean deadlifting 180 pounds that doesn’t mean squatting my body weight. It means taking what I’ve got going on now and making the best of it.
Yeah, that’s pretty fair. Kelly Studebaker is somebody I interviewed for Episode 107. And she started weight training after the stroke. And to the extent that she wanted to be a powerlifter, not just a regular kind of, I’m gonna push a couple of weights up, she wanted to do powerlifting.
I used to power lift I loved it.
Yeah. And she got to the point where she was able to with one side of her body, do all these amazing things and lift really heavyweight. And you can see one side of her body is really jacked and muscular. And it’s huge. It’s a powerlifter’s body. So she moved into that space afterward, just because I think she was challenged by somebody in a gym, somebody in the gym said to her look, I think you can do powerlifting if you want to, you just have to adapt like you’re saying, and be a different version of yourself and use what you have got, instead of thinking about what you can’t do and what you haven’t got.
And it took her five years to get to that point where she was able to, I think compete or be in a position where she was able to do some type of competition. And that’s really what it’s about, isn’t it? It’s about putting as much time and effort in into something that you’re passionate about to get a result, a different result. But still to get a result.
It never even occurred to me to do it. one-sided. That’s embarrassing that have never occurred to me, but it should happen. It never did.
So you’ve got this opportunity to really learn from stroke. And I know this is almost painfully annoying to hear, but what has you know, for some people that is, what are some of the lessons that you’ve learned from your experience? And I’m not talking about Emily needs to behave herself or not those kind of lessons, you know. life lessons.
I never had one of those. I never had like a post stroke epiphany of, I could be this person now or this is my life lesson I’ve learned I haven’t had one of those moments really, What I have learned is I need to be patient with myself. And that I need to wanting to set realistic goals. And the other is that when a goal is set for me, I do whatever it takes to get to that goal.
My physiatrist said that she wanted me out of my wheelchair by the end of February. So February 28. I sat in the chair and never sat in again. My next goal is to be rid of my cane by my birthday on the 14th of October. I see no reason why I won’t be there. Mostly I say my life lesson is that I am very goal-oriented.
And the goal is something that you set at quite a distance into the future does that timeline that somebody sets for you help you? What kind of goals work for you? Because for me, if somebody gave me a timeline, it would probably not work for me in that if I didn’t make it by the timeline, it would upset me or frustrate me or whatever. What kind of goals work best for you?
Um Well, I think I trust people I trust the experts. I’m only an expert in a very small area of the fitness world and but when it comes to physical recovery, it’s a totally different thing. You know, being a physical therapist and being a personal trainer two very different things. I’m sort of in the same genre, but different. So if the experts say we’re going to get you to this place by this timeframe. Of course if you think I can. Of course, I can.
If the expert said that you can’t do something, how would you respond to that?
I’d say you clearly don’t know me. I have my old boss actually, it’s funny. So I went back to work sort of went back to work. I’m teaching an online polities class once a week. So going back to work, it’s not in the studio, but it’s still going back to work.
And I was talking to her when I was just about to go back to work and was telling her about some workouts I had been doing, workouts I wanted to get back to doing and she said, be careful. Don’t overdo it. And I said, have you ever met me? She said that’s exactly why I’m telling you to take it easy and be careful. So if you if you know me, you know I don’t do anything half-assed. Sorry, to all the children listening.
Yeah, there’s no children listening. It’s all good. So what you’re saying is that once you’ve made a decision on a goal, you’re pretty much going after it no matter what.
Yep, pretty locked in on it. That’s once it’s set, once I’ve decided I’m gonna do it, it happens.
Stroke recovery timeline
Yeah, that’s a pretty cool thing and timeline doesn’t seem to bother you. It doesn’t seem to be an issue about time. So it’s great to have a timeline, but then not necessarily bother you. If you don’t get to that time.
Right. I’m not going to be horribly devastated if I don’t get to my birthday and I’m still using my cane. Or if I do get to my birthday, and I’m still using my cane, I’m not going to be crushed or devastated. I’m just gonna say all right, well, I’ll figure it out. I’ll do it again later. I’ll get rid of it another time.
Yeah. Recently you made a post where you walked nearly a mile.
Yes. Without the cane.
How long has it taken you to get to that point where you can walk almost a mile without a cane?
When did my no cane journey start? I think probably in the spring still, we’re deep into August and we’re deep into summer in New York. So I think probably in maybe in March or April, I did my first couple of steps without the cane. I called it Franken steps. I looked ridiculous. So I did a little Franken steps tours around the neighborhood every like, you know, a couple of one block.
And then I’d rest, I was exhausted. One block and I would rest. So I’ve gotten really serious about it. They really in the past week or so, going out every day doing what we call sprints. It’s not a sprint, but it’s a sprint. It’s a no cane sprint. It’s going there. We have a courtyard next to our building with a fence. So I sprint, the length of the fence.
I see how long it takes me to get from 1 corner to the next corner. The first time I did it, it took one minute and four seconds. Today I did it. It took me one minute and six seconds I’m going in the wrong direction. But it was the practice run. I’ll figure it out tomorrow. I just have to practice it. Once I’m able to do it once I can do it again. I told my friend the other day I said there’s no regressing and stroke recovery. You do it once you can repeat it. It’s only moving forward.
Yeah, absolutely. So what about the things that do get in your way from feeling motivated on a particular day? Do you ever have those days where you’re feeling unmotivated and you say stuff? I’m not doing anything today?
Absolutely. Well, I never have a day where I don’t do something. either. I try to do something new every day. one new thing. De. There are days of course, when I just want to be lazy. I want to sit around and fuck around on my phone. I want to watch something online. But I don’t have that luxury. And I have the luxury of just doing nothing. Yeah.
I have to I have to do something every day.
What’s the thinking behind that? You don’t have the luxury. So is it because you’re concerned about going backwards? Is it because there’s so much to do? There’s so much still to achieve? Like, what? Why don’t you have the luxury to do nothing?
There’s so much left to achieve. There’s so much more than I want to be able to do.
Yeah, and it’s early days. I mean, it really is still early days in your recovery. You’re not Yeah,
it’s only been a year and a half. Yeah. It’s nothing.
Yeah, the brain takes ages to heal properly. Even after the damage has been incurred. It’s still interrupted and in to feud with around the damaged site by other bits of inflammation and things that are sorting out and getting better. And then that takes a couple of years on its own to settle down and heal.
Good. Okay, good. That’s actually good to know. I didn’t know that my doctors have not mentioned that.
Yeah. So what happened to me was I found myself being technically free from the issue in my brain, the blood vessel, that burst was no longer there, it was gone. But then I started to heal in this other way, which was an internal kind of brain healing. That was different from the trauma of the surgery and different from the trauma of the bleed in the brain.
It was different from all of those traumas. And there’s kind of like, an onion you know, there’s multiple layers of different versions of healing and they all happen at different paces and at different rates. So people that are listening who are early on, they might have a kind of like aha moment, a little bit down the track going, Oh my gosh, I can do something that I didn’t realize I hadn’t done for a long time or I remembered something or, my focus has changed.
And I had that just recently, probably in the last six weeks if I’m honest, my brain has switched on to a point where I can focus and concentrate for a lot longer. In front of a computer, especially now that we’re in isolation. I’m on stuck at home and I’m doing a lot of online, building my online courses and my offerings to the stroke survivor community.
I haven’t been able to sit down and focus for eight hours a day. And being in a computer was the worst thing that you could have done to me. Whereas now, I’ve had this next kind of level of my brain switching on again. And it’s really profound because I haven’t experienced it for eight years and I mentioned it to my wife literally a couple of days ago and told her, I’ve been so productive in this downtime. I’ve never been so productive in the last eight years.
Yeah. So what I’m trying to illustrate is that the perception for some stroke survivors, when they’re in the thick of it is that oh my god, this is hard. It’s always going to be hard. I’m never going to gain anything. I’m never going to achieve anything. But then there are those light bulb moments where things come on and you go, woah, that’s new or that’s different or That’s better.
I think that’s part of it is I want to do something new every day. Because I don’t want to feel like I get to a point like there’s so much more ground for me to cover in my recovery that I think there’s plenty of room for something new every day. Yesterday my something new was doing heel lifts in the kitchen. Tomorrow, my new thing will be to walk farther than I have before without my cane. That either seems like something is so simple that you do the same walk you did without the cane before. Of course I can do that again. I just add on another block. I can do that. That’s easy.
And do you experience spasticity and left side proprioception issues and numbness and all that kind of thing?
My proprioception has gotten much better lately. I don’t have numbness I have tons of spasticity. My hand right now is a little fixed (inaudible). My hand is I’ve been doing a lot of mirror box. So I’ve been doing about a half an hour mirror box every day for the past week or so. And my left hand has seized up dramatically. So mirror box is working. In that my hand is getting another like a bigger message to work, but it’s overdoing it so I have to stretch it a little bit more. My leg seems to be okay, not less spasticity in my leg, for a while my toes were gripping, not so much anymore.
So they’re getting better.
Yeah, that’s getting better. And I have a tendency to roll my ankle on my left foot. Even before the stroke I did that like a few months before the stroke. I’d had a small I rolled my ankle at work, got a very small fracture, and I never really fully rehabbed my ankle. I was just about hundred percent with my ankle and then I had the stroke and so the whole leg went to shit.
Yeah, such a thing, but it has such a major impact because it’s so low and your ankle being just a fraction out, impacts your entire, you know, musculoskeletal system and puts you out of whack at the top. Which bikes with your muscles tense up and tighten up, and then not support you correctly.
Absolutely, absolutely. And that’s actually something that as in the classical blobbies world we talk about all the time, you know, that the hip bones connected to the foot bone and blah, blah, blah, and so on and so on. Every bone is connected to something else and your body, say, if one thing is off, everything’s off.
So how do you rectify the ankle? Do you brace it? Do you do something with it?
I have a really hardcore AFO that I wear a custom made AFOfor my left foot. And it holds me in a nice stable position. There was a period where I was stepping on the side of my foot and rolling my ankle during recovery. And that was a proprioception thing because I just had no idea where my foot was. And that sense by appropriate obsession has gotten much better. That I know where my foot is landing when I’m walking now. I take that as a win.
Yeah, my surgery was in November 2014. So it’s been nearly six years. And my proprioception is much better than what it was when I first started. But when I get tired, I will run into the doorway with my left side or my right side because my proprioception kind of starts to fade, the quality of it starts to fade a little.
And then my ability to judge distance, compared to you know, where the doorway is, and where my shoulder is, also becomes irrelevant, almost like it just kind of goes away. It’s not there. And I often find myself just bumping into the doorway. And when I walk in the city with my wife, or we go for a walk for exercise, and she’s next to me, I’ll forever find myself just walking into her path.
That’s something I did before my stroke
And she thinks that I’m trying to hog, you know, the footpath or the walkway. And she’s constantly telling me just get out of my way, stop walking into me.
When I was a kid, that’s actually funny. You say that when I was a kid, I would do the same thing. I’d be walking down the sidewalk with my mother. She say, stop walking in my way, get out of my way you’re walking. I would just kind of veer into her path. I had crappy proprioception even before I had a stroke, apparently.
So it’s interesting that you’re getting better. You’re finding that things are improving. Slowly, slowly, you’re noticing that your ankle is supporting you better just because your proprioception deficits are changing and they’re evolving. And you’ve got a brace that supports you. How does your knee work? Do you get a really good response from your knee or does it sometimes lose the ability to hold you up because I used to stand up and then find myself you doing the one knee dance, you know, these ducking and weaving routines.
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like now how long will it take to recover? Will I actually recover? What things should I avoid? In case I make matters worse, doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask.
If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation. Stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you, it’s called seven questions to ask your doctor about your stroke. These seven questions are the ones bill wished he’d asked when he was recovering from a stroke. They’ll not only help you better understand your condition. They’ll help you take a more active role in your recovery. head to the website. Now recoveryafterstroke.com and download the guide, it’s free.
How’s your knee doing?
My knee is okay. The knee is the least of my worries and he is pretty good. It doesn’t buckle underneath me anymore when I was in acute rehab in the very early days. It wouldn’t do it. It just it just came right underneath me. And I would also get I would as I was on the treadmill getting noticed they say just get the reps in doesn’t have to be pretty just do it. I was walking on the treadmill, my knee would start to hyperextend and snap backwards it got really painful. It’s fine now it’s gotten used to working again.
Yeah, you sound like a really headstrong really determined person.
Yes, you can ask anybody who knows me That is how they would describe me probably I’ve heard that many times before in my life.
Really independent. So what was it like when you, realize that some of your independence was gone?
That’s actually been the biggest struggle for me. And I was just talking about that today with Matt. Matt has, I don’t know how he does it. He’s been with me every single day. He is the true hard worker in this situation he’s been with me every single day. He takes care of the house. We have an apartment in New York. So it’s not much it’s not that big, but he does all of the household chores.
And it kills me that I can’t help it drives me crazy. Drives me crazy that I can’t just go out for a walk on my own. I can’t just go to the gym when I want to. I can’t just go for a bike ride when I feel like it. So that’s been the thing that most frustrates me is that I’m not able to participate anymore. I can’t help out around the house. I can’t just go where I want to go when I want to. So I’ve had to learn to sound so corny be nicer to myself. Sounds so hokey, but I’ve had to just kind of let it go. There’s nothing I’m you know, I’m doing everything I can to get past that stage. I can’t speed up recovery.
Yeah, it’s something that we spoke about with the OT sisters who are on podcast episode that I am going to release just before this one. And one of the tips that they give stroke survivors to support themselves is to be kind and to have compassion for yourself. Allow yourself to stuff up and not achieve something and not do something and then forgive yourself or be okay with it and be your best advocate rather than being your biggest critic.
Absolutely. Because there’s only so much I can do to get better and I’m doing everything I can to get better.
Are you at the stage where you can comfortably go into shower and bathe yourself and do all of those types of things.
Yep, that stuff I’ve been able to do for a while I have a Shower Bench at home. And the hardest part of getting dressed is the bra. I just lost my hand speaking of proprioception, my hand just slid right off the armrest. I, the hardest part of getting dressed is putting my bra on. Everything else I can do that stupid bra clasp. So stupid. So I had to figure out kind of problem-solving techniques. So how do I put a bra on myself? I had to buy a whole bunch of pullover bras and figuring out the ways to make it happen.
Yeah, I think there’s a multimillion-dollar invention in there for somebody because every time I speak to a woman, every time I spoke to a woman who’s had a stroke, the bra is, a very, very big issue and I reckon if somebody could solve that problem for them. That would be amazing. And I think it needs to be a woman who’s had a stroke. Not a man who hasn’t had a stroke.
Yeah, there’s one little toy that I found on YouTube. I’m not going to say the name because it’s total crap. It’s such a waste. I was so excited about it. I was so hopeful. I got it and it just didn’t work. And I was like, Okay, well, there goes that that ship has sailed. I guess that’s not happening for me. And then I just started buying the pullover kind. If I want to be able to do something, I have to figure out a way that I can do it.
Yeah. So the pullover kind is like a sports bra?
Yeah, like a sports bra.
That you would wear at the gym or going for a run or whatever?
And I do it the same way. I learned to put the T shirt on I pull the sleeve up and over my shoulder, spin it around. Duck my head through spread my other arm in. The only way I’ve been able to do it, and I’ll take it, it works. It’s worked so far. And it’s the last piece of the getting dressed puzzle.
The stroke carer
Are you consciously aware? I know the answer is yes. But how did you become consciously aware of what Matt might be going through? And is there some things that Matt your carer is holding out on you and not really telling you about?
I don’t think so. We’re pretty honest with each other. I don’t think he’s holding in for any information out from me. If he’s stressed, if he’s tired, he’s exhausted and he tells me he’s exhausted and it’s understandable if he’s is exhausted. He’s doing an impossible task all by himself.
Is he hard on himself as well?
Yes, he is. Definitely hard on himself. And I think it’s been a learning process for both of us that sometimes I have to say, you know what, I want to be able to do that myself. But I can’t like today in particular. He cooked dinner tonight. I’m not cooking dinner anytime soon. I sometimes do try to cook. I used to cook dinner every night.
But I can’t do that every night now. So he cooks every night. And after dinner, he joked, he said, Are you going to wash the dishes? And I said, Yeah, I’ll go put the dishes in the dishwasher. He said, No, you’re not. I said, What do you mean I could totally put the dishes in the dishwasher. He’s like you’re not putting the dishes in the dishwasher.
So I want to help he knows I want to help but there’s a limit to how much help I can be. And he also as much as he wants me to help is also realistic and knowing that there’s some things I can’t do so. So I know when he’s frustrated, I know when he’s tired. It’s definitely a stressor. Obviously, it’s a big stress on the relationship. But you figure it out. You figure it out, you have to have open and honest conversations. If something is bothering you, and you don’t talk about it, it’s just gonna turn into resentment. And that’s poison.
Do you hold out on him and from the perspective of I know I do with my wife. So what I hold out on is some days when I’m feeling shitty, again, which is all the time or whatever. I maybe don’t share it with her again and all the time so that she doesn’t have to hear about it all the time. At the beginning, she was getting it 24 hours a day, seven days a week. And then as it started to progress, I stopped sharing all of the juicy bullshit.
He knows he knows when I’m not feeling off the shelf, he says, Are you alright? I go yeah. He goes are you sure? And then I start to think, wait, maybe I’m not okay. does he see something I’m not aware of? Why is he asking me maybe I’m not okay. And I just don’t realize it. But he knows he knows me better than anyone else. He can read me better than anybody else. It’s amazing. It’s kind of creepy, but it’s pretty amazing. He knows when I’m feeling a little crummy. And he knows how to get the information out of me when I’m feeling a little crummy. And he generally knows why I feel crummy too.
Are you are aware of how you’ve taken your recovery, and you’re doing this physical part, you’re doing this cognitive part where you talk about your goals, your process, and then you do this other part, which is in pictures and in images, and to the point where you’ve got The Emily’s strikes back on your T-shirt.
I had to be on-brand.
When I saw that on Insta, I automatically liked your page and said hello or something like that or commented on your post. Are you aware of like how imagery is fully important in supporting recovery as well as the words and the actions?
Absolutely. The reason why he started the Instagram page was so I could look back at my progress so that when at the end of the day, when he came from after work and was reading me to sleep at night, and he said, What did you do today? How was your day? And I would say, Well, I did this thing when I couldn’t do this and I couldn’t do this and I couldn’t do this.
The keyword is always yet I couldn’t do this thing yet. And then he’ll say we’ll look back at this video. That’s how the video started. Look at this video of this thing you couldn’t do a week ago. You’re doing it now. You couldn’t do it today. Look at what you couldn’t do a month ago. Now you can do this other thing.
That was always the point of it was always to reflect back to see my progress. And that’s really what that mean that’s how it started. And now it’s become this other creature in and of itself at people from all over the world I mean you’re in Australia. We’ve got got Lena Elfsborg in Denmark. And how glow does it now in Texas.
There are people from all over. Fe the girl who survived we’ve got Fe in the UK people from all over who have reached out we have one woman in Peru qualia. Everybody’s wonderful people who reach out to us and say the things you’re doing I find really inspiring. That’s amazing. And it was for me It started something for me and it’s turned into something else into really different.
And it’s amazing. And my friend who just had the stroke as well, now I can at least use my experience to help her through this. So if I can turn this into a positive experience for somebody else into a help to somebody else. Absolutely. That’s, always something that’s been a thread running through my entire life. If I can help somebody else, then it hasn’t been worthless, then there’s been something valuable behind it.
How good is it to be in that position where you can be the confidant or the advisor or the emotional support to somebody who’s just been through a stroke, somebody that you know, so closely that if you hadn’t had a stroke, you would be? Well, for lack of a better word, almost helpless, you know, to do anything for but now, you’ve got this thing in common and it’s come from the shittest experience, but how good Is it to be the person who can automatically bridge that gap for your friend who, you know who without you would have experienced the same kind of gaps that you experienced.
I’m thrilled, I’m thrilled that I’m able to. It’s one of the few things that makes me happy now. There’s not a lot that makes me very happy. That makes me happy that I can you know, I’m not unhappy. I’m not miserable. I’m not an unhappy person. But there’s not a lot that makes me go, Oh, yay, this is great, that I can help somebody else makes me think this is pretty good.
What makes me really happy is helping somebody else. And that new thing I do every day, one new thing a day and if that one new thing is helping my friend kind of have a better understanding of what she’s going to go through. Then it’s good. That’s a good thing. There’s a point to all of it.
Yeah, there is a point isn’t there? We should give her a shout out. What’s her name?
Barbel. I actually sent her a link to the show. And tell her I’m going to be on this guy’s podcast. It’s about stroke recovery, you should listen to it. So I will tell her I’m gonna tell everybody when the episode goes up the Barbel. Big kiss to Barbel. We love you.
Awesome. So yeah, so this is the thing like many stroke survivors do what you have done. And I found myself in a similar situation because I had learned some things that I thought would be helpful. I did start to share them that was about me at the beginning, because, you know, I wanted to feel good about myself.
And, it started as the podcast, it was called the transit lounge podcast, and that was in 2015. I had a lot of ideas. I needed to download those somewhere, get them out into the world so that they’re out of my head and they’ve captured some way in case I forgot them. I could go back and listen to them. And then I started to get feedback from people again saying the same thing.
Thank you. I needed to hear this episode. This was a great episode, I’m going to share that with somebody. And then it became this thing that was impossible for me not to do anymore. It was because I had often thought, Oh, I’m not gonna do this anymore. I’m over it. I don’t want to do this. And then it became, I can’t not do this. There’s so many people who are going to go through stroke, that they’re going to need as much information as possible. Yeah, wow, I can’t stop. I feel obliged to do it. In a good way.
Well, I feel a little in a way I feel obligated to get better. There’s so many people watching me. It’s one of the things that makes me continue to want to get better. I feel like I can’t fail. I can’t fail for myself. Obviously it might. I’m my first priority. I can’t fail for myself. And I can’t tell all the other people who are watching from the sidelines.
Yeah. I totally hear you. It’s like putting it out there and creating an expectation and then people are kind of waiting going, alright, let’s see is he gonna trip up, is he gonna get to the end. What’s gonna happen with this guy? And I’m like that too. I don’t want to let people down or disappoint them. Not that I really care if they’re disappointed, but from that, no, I want to show you that it is possible. And I want to be the example of how it’s possible. I don’t want to just talk the talk. I need to walk the walk.
Yeah. And it’s not a matter of I think disappointing other people. I’m not afraid I’m going to disappoint them. Because in the end, in the long run, they don’t matter. I matter. They matter in the sense that I know they’re back there. And I know they’re cheering for me and I know they’re rooting me on. But they aren’t going to live the rest of my life for me.
I have to live the rest of my life and I have to make the best of the rest of the life that I have. And the best of the rest of my life means not walking with a cane for the rest of my life. It means being able to tie my shoes. There’s there’s a whole laundry list of things that I want to be able to do. And it’s because it’s for me, not for other people.
Yeah. But that’s gonna help other people because they’re gonna go alright. Emily did it, then maybe I can do it too.
Yeah. And I think we need that. And I think hearing these conversations in the way that they, you and I are having it right now. We’re talking about ourselves. And what we need to do is, you know, these are things that people need to do for themselves as well. So that people listening need to go, well. Oh, okay. So I need to do this for me, not for mom and dad or not for other person, whoever. And then the fact that they get better for themselves means that everyone else gets to benefit regardless. So that’s like the bonus
Oh, Speak of the devil Look who just popped in the door. Where is he?
Is that all we’re gonna get? Hey, Matt.
He can’t hear you. I’m still on the headphones.
Taking responsibility for your own recovery
He’s just checking on me. He’s always checking on me. No, I have a lot of responsibility to myself. I used to say a lot in the beginning, I said, I would say to Matt, I said, I have to get better for me, for you and for us. He would say you’re not getting better for us. You’re getting better for yourself. And it’s true.
Yeah, that is so true. And it’s responsibility for yourself. Like it’s taking responsibility, isn’t it?
Right. And I thought it was saying it would be flattering to him. He’s got so much unnecessary responsibility on himself. Yeah, that’s just me putting more responsibility on him. Yeah, that’s not very fair.
Yeah, it comes from the right place, but I understand that it could be a little bit of a burden on him. And, and having the awareness about how not only how we are impacting our own well being by having the types of thoughts that we have we also impacting the well being of the people who care for us the most, and the people who are doing the most for us and supporting us the most
Unknown Speaker 54:31
And it’s a way of showing appreciation also, I think.
Yeah, and carers do get a bum rap. They don’t get the full extent of what they don’t get any support really do they who do they get support from? Unless there is a carers support group somewhere, which most stroke carers can’t get to? Because they’re too busy caring for the person who’s unwell.
That’s what he says. He says, Well, how am I supposed to go see my own shrink? To go see my own shrink that leaves me home alone for the hour plus the hour it takes to get there and the hour it takes to get back. So that he goes to take care of himself. I’m the one who gets in if we didn’t have at home health aide is what they’re called here in New York, a home health aide HHA.
If we didn’t have an HHA, he would never be able to leave the house. We only have her Monday through Friday, during the daytime hours. And luckily, he’s been working from home all through Corona. So he’s been home the whole time since March. Working doing all of it on top of working and I don’t want this to turn into the Matt appreciation hour. But he does need to get recognized for all the work he puts in.
Yeah. It was Matt who sent me a postcard.
Yeah, you had our postcard?
I did. And I thought, oh my god, like, that’s one of the last things I expected to happen to me. That’s somebody from the other side of the planet would think you know what we need to do we need to send a postcard to this guy in Australia in Melbourne. And it was so lovely to receive it. Because it meant that what I’m doing had purpose, it meant that what I’m doing made a difference. It meant that what I’m doing, helped people in it created support for people and all the things that I imagined that it would do in that car that came in the mail was just like it’s cemented in my mind exactly what I thought I was doing this for. He’s such a cool dude like to come up with that idea.
He is a cool guy. He’s incredibly thoughtful.
He sent it around the world to a number of people, right? I wasn’t the only one who received a card.
We sent to Lena Denmark. And we sent to you in Australia was sent to Lalia and Peru. What else did we send to? Oh, he can’t hear me now.
But yeah, we send a couple to different places we send to you. Lena, Lalia, I forget who else. There were a couple others. But it was his idea was like we should, say hello to these people. When he was a kid. He had a pen pal. From like a music magazine. He had a pen pal. And they wrote back and forth about music and all sorts of nerdy things Dungeons and Dragons. And I guess he carried that over into his adult life. It’s a lot of fun to get mail from somebody to get real mail.
It is these days it’s far better than an email. Absolutely. It was such a treat to receive it. So tell me what’s on the horizon for you. What are you thinking about doing? And what are your next few short term goals and long term goals? I know one of them is to walk without the cane. What else is on the list?
Yeah. I want to go for a jog I’ve never wanted to be running in my entire life more than I do right now. I want to be able to go out for a jog. I want to get a new dog. I want to be able to go out for a walk with my dog. I used to have an 80 lbs Pitbull.
It’s a good thing. We didn’t have him anymore when the stroke happen. What would we have done with an 80 lbs dog. So I want to get another dog take him out for a walk. So go for a jog. Get a dog go for a walk. It’s all I wanted to be able to go to the gym on my own and do a workout on my own. To be able to travel again. Get back to work. Just get back to my life.
Yep. all the amazing things. Can I challenge you to do that to take the jog and then expand that a little bit and do a marathon?
Ah, I appreciate the suggestion. But after two spinal surgeons spinal fusion surgery, I’m not doing any marathon. My distance running got me into the first spinal fusion surgery, so I’m not doing any long-distance running.
All right, okay. I won’t hold you to that then. And I didn’t realize there was another underlying reason I mentioned that because, you know, one of the episodes, really early on in the podcast I interviewed a friend of mine, Donna Campisi. It was Episode 28.
Yes, I remember that episode.
Yeah. And after, man, she had a stroke when she was eight. So she’s in her 40s now, and so it would have been after three years, Donna ran a marathon because she went to a physical trainer, somebody like you probably and said, I just want to run a little bit or something. I don’t know what. And that guy goes, Yeah, well, we’re not doing this, you know, five-kilometer run. He goes, we’re doing a marathon and she was like what are you talking about?
Oh, that’s a very good trainer. I take that back.
I’m never running a marathon. And sure enough, they put in all the work and Donna’s a pretty amazing lady. And they went through all of the training and all the effort for her to finally run this marathon and she wears a big like a brace as well. And she adjusted, you know, her technique, the way that she was landing and walking and doing all sorts of things to finally get across the line after a marathon. And I just thought she was amazing because I’ve never gonna run a marathon. Whether I was able bodied or not, it’s just not anything that ever crossed my mind to do. But the fact that she did it after a stroke.
Unhealthy for you.
No as a trainer. Running is not good for your body.
Is it too much impact?
Yes, too much it’s not good in the joints. I explain it to people as Imagine you’re a Jenga tower, and you’re just slamming the Jenga tower over and over again on the table. Jenga tower crumbles. It falls apart.
Yeah, right. So it’s best avoided. So I think I did the right thing to motivate myself in the opposite direction and not to actually ever run a marathon.
Yeah, it’s not good, especially if you’re running. I used to in high school. I used to run 12 miles a day for the fun of it. No reason just because I wanted to. I even wrote my college entrance essay about running, and I used to love it but I was diagnosed with this this is going off the track off track a little bit. At 15 years old I was diagnosed with a spinal defect called spondylosis thesis, which ties into actually my carotid dissection.
I was told that I have a soft tissue disorder and it explains so spondylosis thesis is a moving your spinal column moves. So my spinal column shifted, it was all stacked up and then it moved forward. So my soft tissue just doesn’t work properly. I’ve always been very mobile in my joints. So the carotid dissection makes perfect sense, stays right in line with all the other soft tissue not working properly.
So now you’re all about trying to heal yourself and get better and recover and not put your body into undue stress and make matters worse.
Exactly, get strong as the goal get strong and capable.
Yeah. So it’s interesting because a lot of stroke survivors go the other way and Donna isn’t one of those people who has completely gone the other way and that she’s always going to run marathons. It’s just a challenge that somebody suggested and she took up the challenge. And then she achieved it. And she does amazing things in other parts of her life.
But I know there’s a lot of stroke survivors who go from being very low effort and low risk-taking and then they go next level, and they start pumping weights in the gym even more, they push themselves even harder. And to me that doesn’t feel right personally because I feel like I don’t want to wear myself thin or, or wear myself out sooner rather than later. You know. I just want to get stronger as well. But then there’s this other extreme level of effort that people put in Because of the way that they’ve comprehended what life’s about what happened to them? Who knows?
Everybody does it in their own way you have to you get better. And the only way you know to get better your physiatrist can set a goal. But you’re the only one who knows how to get yourself to that goal. They’re like I said, the experts have a plan. And they set the landmarks and the goals for you to reach a particular times. But as a trainer and a blobbies teacher, I’m in a unique position to really understand body mechanics and understand what muscles need to go into which movement patterns.
So I know my foot turns in like this. I know what muscles I need to work on to straighten it out. And so if and if I want to go out for a jog My foot needs to be straight. So to go off for that jog, I need to get those other muscles strong so my foot doesn’t turn in. It’s simple things like that. And if you want to be able to, if you have a goal you want to get to, if you don’t know how to do it yourself, you talk to the experts.
Talk to the physical therapist, talk to the resources, the people you have available to you. Everybody who has a stroke has a physical therapist who has an occupational therapist somewhere in their recovery. Asked those people I want to be able to I really want to be able to play the piano again. But my fingers just have not joined the party yet. They’re still hanging off they’re still wallflowers they’re not ready to do anything yet. They will be and the keyword again is yet.
Yeah, it’s a very powerful word yet. We spoke about it in the last episode, as well, is an amazing episode or interview on YouTube. I think It’s a presentation actually, on YouTube by Carol Dweck. And Carol Dweck is the person who put a book together called. I think it’s called something about The Growth Mindset.
Carol Dweck, you said?
Yeah, Carol Dweck, I think. And she talks about the power of “yet” and she’s up on stage. I think it’s a TED talk. And she delivers that presentation. And it’s so fascinating. And it’s so great to hear that they are starting to teach that power of the word yet to children at school so that they understand that if they haven’t achieved something, it’s not fail or a pass. It’s just they haven’t got to that point yet. And it’s a really powerful message for stroke survivors as well.
Really is It’s one of the first things I said to barbell said something you can’t do today. It’s just a matter of yet. You’ll figure out how to do it. You just haven’t done it yet. One of the first things I said to her.
Emily is an amazing way to end the podcast. Thank you so much for joining me. I really appreciate it. My pleasure. I really appreciate the role that you play in the community online, in the Instagram world.
Yep. Glad I can be part of that community. I’d rather not be part of that community. But if I’m going to be part of that community, at least be a positive presence in it.
I know it’s a community that none of us wanted to join.
It’s a community I could’ve done without being part of.
Yeah, definitely didn’t want to join it. But now that we’re here, I’m glad that you’re involved to the extent that you are And, I’m really glad I’ve got to know Matt and I really appreciate receiving the card. Because everything that you guys do has made a difference to me and my recovery as well.
Excellent. Thank you. I’m glad. I’m really honored. I told you this I’m really honored that you would ask me to be on the show. I’m just some weirdo in Brooklyn who had a stroke.
I’m a similar weirdo on the other side of the planet.
Good. weirdos unite. That’s how Emily strikes back started. Cuz a friend of mine was like said, You’re a badass. And I could have thought of a million better ways to show that I’m a badass. You’re a badass the stroke had its chance. Now Emily Strikes Back.
Discover how to heal your brain. After a stroke go to recoveryafterstroke.com