Stroke Fatigue Recovery: Why You’re Not Lazy, You’re Healing

Some mornings you wake up and think, Today will be different. Today I’ll catch up.
But by lunchtime, you’ve folded a towel, answered one message, and the fatigue hits hard.
And the guilt follows right behind it.

Sound familiar?

If so, this post is for you. Because stroke fatigue recovery isn’t talked about enough, and it’s not as simple as needing more sleep or drinking more water. It’s complex, emotional, and deeply misunderstood.

Let’s talk about it.

💭 What Is Stroke Fatigue?

Post-stroke fatigue is more than being tired. It’s not just feeling a little drained after activity, it’s a full-body, full-brain depletion that can strike at any time, without warning.

You might feel:

• Like your brain is in a fog, even if you slept.
• That walking across the room takes more energy than a gym session used to.
• Overwhelmed by tasks as simple as reading a menu or answering a text.
• Frustrated when others don’t understand what’s happening inside your body.
  

This isn’t laziness.
This isn’t weakness.
This is your brain recovering from trauma.

🧠 Why Stroke Fatigue Recovery Feels Invisible

One of the hardest parts? Other people can’t see it.
You may look fine, which makes it harder to explain why you cancel plans, nap at odd hours, or get overwhelmed in noisy places.

People might say:

“You look great! Are you back to normal now?”
“You’re just tired — we all get tired.”

But stroke fatigue isn’t regular tiredness.
It’s not solved with coffee or a power nap. It can hit in the middle of a conversation, after a short walk, or for no reason at all. It’s not just physical — it’s cognitive, emotional, and neurological.

And yes, it’s real.

⚙️ What Stroke Fatigue Recovery Actually Involves

Recovery doesn’t mean “get over it.”
It means learning to:

• Pace yourself without guilt
• Rest before you crash
• Explain your limits without apology
• Celebrate small wins, even if they don’t look like progress to others
  

It also means dealing with emotional layers: grief for the old version of yourself, frustration with your pace, and the fear that “this might be as good as it gets.”

But let me tell you something from experience: stroke fatigue recovery is not a straight line.
It’s more like a spiral, and even when you feel like you’re going in circles, you’re still rising.

🔄 Zoom In. Zoom Out.

When stroke fatigue hits, it’s easy to zoom in on what’s going wrong.
You see the unwashed dishes, the texts you haven’t answered, the goals you haven’t reached.

Try this instead:

• Zoom out. Look at where you were 3 months ago.
• Look at what you can do now that you couldn’t before.
• Acknowledge that healing is happening, even if it’s slow.
  

Recovery doesn’t mean feeling amazing every day.
It means showing up anyway, even if that just means brushing your teeth and sitting in the sun for five minutes.

💡 You’re Not Alone in Stroke Fatigue Recovery

If no one’s said it to you today, I will:

You’re doing better than you think.
You’re not lazy. You’re not broken. You’re healing.

And healing looks different for everyone.

There are days when stroke survivors feel almost normal, and days when the deficits hit hard. And both are part of the journey. The more we talk about it, the less shame we carry.

So if you’re navigating your own stroke fatigue recovery, be kind to yourself. Let the small victories count. Ask for help. Rest without apology. And remember that every step forward, no matter how small, matters.

📘 Need support for your journey?

If this resonated with you, I share stories, tools, and encouragement in my book
👉 The Unexpected Way That a Stroke Became the Best Thing That Happened
It’s written by a stroke survivor, for stroke survivors, and filled with insights on how to move forward, one day at a time.

Feeling My Deficits HARD Today: Real Talk on Stroke Fatigue and Recovery

Emily and I recorded this episode while feeling the weight of our deficits, what followed was one of the rawest conversations on stroke recovery.

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Highlights:

00:00 Emily Stewart’s Stroke Journey and Initial Conditions
02:28 Life before the stroke
07:02 The Day of the Stroke
16:51 Medical Diagnosis and Surgery
25:21 Finding Blessings in the Unexpected
33:06 Recovery and Therapy
46:41 Living with the Invisible
54:14 Daily Life and Adjustments
54:51 Impact of Social Media and Support
1:06:17 Emotional and Mental Challenges
1:06:58 Final Thoughts and Encouragement

Transcript:

Emily Stewart’s Stroke Fatigue Recovery Journey and Initial Conditions

Bill Gasiamis 0:00
Today’s episode almost didn’t happen. Emily Stewart and I both woke up feeling the weight of stroke recovery, those days where the fatigue is deeper, the brain fog is thicker, and even the basic things feel like a battle. But we hit record anyway, because if you’ve been through a stroke, you know those are the days that matter the most. Emily’s story is layered. Before her stroke, she’d already lived with alopecia for years, and she shared that journey publicly to help others with their own identity in a world obsessed with appearances.

Bill Gasiamis 0:35
Then in 2024 while on a trip with her husband, she had a stroke caused by a carotid artery dissection. What followed was an experimental surgery that may have never been done that way before. This is a conversation about medical miracles, hidden deficits, messy recoveries, and what it takes to keep going even when your body says stop, whether you’re early in your recovery or deep into the long game. Emily brings perspective and honesty you’re going to feel in your bones. Let’s get into it. Emily Stewart, welcome to the podcast.

Emily Stewart 1:11
Thank you. It’s good to be here.

Bill Gasiamis 1:13
It’s great to have you here. So let’s let people know the conditions under which we have attended, because it’s really important. So you told me that?

Emily Stewart 1:25
Yeah, yesterday and today, of course, at the like, most inopportune times, I just woke up, like, really feeling my deficits, really feeling tired, and just, you know that exhaustion that comes as part of the stroke recovery and my aphasia was a little worse, and my thought process was slow, and I was like, I’m not sure if we can do this today. But then I just thought Bill and his listeners, of all people in the world, would understand exactly what I’m going through, what I feel like, and so we’re going to just muscle through, carry on and push forward.

Bill Gasiamis 2:00
I love that you did that, because I woke up this morning with the biggest headache I’ve had in ages, my deficits as well. I love what you said, feeling them more than usual. So my left leg feels a real tight, and it’s kind of like telling me you shouldn’t probably be walking. But nonetheless, I got up and I thought, if I cancel, that’ll be the wrong thing to do. I don’t like canceling either, because people make a lot of effort to get to the podcast just like you.

Life Before The Stroke

Bill Gasiamis 2:29
And then I thought, “Oh well, we’ll just get it done.” And there you are. That’s the first thing that you said to me, and I felt a little better. So if this podcast is basically what we’re trying to do is we’re trying to say to people, if we seem a little bit strange during the podcast, that’s why, and you guys are alright with that, because, you know what little bit strange?

Emily Stewart 2:49
Yeah, feels like, yeah exactly.

Bill Gasiamis 2:54
Emily, tell me a little bit about what life was like before stroke.

Emily Stewart 2:58
So before stroke I said this actually to my family earlier today. I’m like, that was actually the best time of our lives. We’ve had a really great life. My husband and I have been married for 27 years. We have four kids, and I was a stay-at-home mom and homemaker for 25 years, and I loved it. I loved everything about it. I felt like I really mastered that, and I was really good at it. And our young, well, not our youngest, but our last child has had just left the home, and so she was now off on her own.

Emily Stewart 3:30
Now all of our kids were off on their own. It was just my husband and I, and it was like this time that we’d, like, dreamed of, right? Like, we were so excited to just be the two of us in this moment together, because we got married young. We had kids right away. We had four kids in five years. And so our life was just like consumed with kids very early on, and so we were.

Emily Stewart 3:50
We had really looked forward to this time, our whole married life. And so we were, we love this it was about 10 months prior to our stroke that it was just the two of us, we and we had a great time. We traveled, we did whatever we want. We kind of thought “This is it.” We’re like, we made it. We survived the hard years, like, this is it. We’re gonna have a really good time now going forward. So that was kind of life before stroke.

Bill Gasiamis 4:13
So four kids. How young were you when you got married? So I was 21, I had two kids. That was enough for me.

Emily Stewart 4:20
I was 21, and so I had amy first at 22 my second at 23 and then there’s a three year break, and then two more. Boom, boom, back to back.

Bill Gasiamis 4:30
Wow, busy household.

Emily Stewart 4:32
Yeah, exactly, it was.

Bill Gasiamis 4:34
Breakfast, Bedtimes, Dinner, 24/7

Emily Stewart 4:39
Yeah, literally, which was fabulous, and it was exactly what we chose. We chose that life, we chose. Thankfully, my husband was an awesome provider, and he really chose that and it worked really well for us. I know it doesn’t excuse me, it doesn’t for everybody, but for us, it worked really well. We chose that life. We chose that I would be the homemaker.

Emily Stewart 5:00
And like, I said, I felt like I was really good at it, like that was kind of what I was made for. Was motherhood and, like, running a home, and I was efficient, and I felt like, I was good at it. It was really what I had mastered, yeah.

Bill Gasiamis 5:15
Wow. So the oldest, how old would the oldest say? And how old is the youngest?

Emily Stewart 5:20
Right now. So the oldest is 26, you’re going to challenge me 26, and then my youngest is a, let’s see, is he 20? I think he’s not quite 26 and then my youngest is about to turn 20.

Bill Gasiamis 5:36
So my kids.

Emily Stewart 5:37
And then we have, I mean, the kids are great, blah, blah, blah. We have three grandkids. So that’s really the best part.

Bill Gasiamis 5:46
Okay, I love that immediate just forget about the kids. Let’s talk about the grandkids.

Emily Stewart 5:51
We were here. We survived the kids. Now we have grandkids. Yeah, and that’s the best.

Bill Gasiamis 5:56
Okay, so I thought that my tendency to, like, feel neglected when my kids came along and my parents completely ignored us and just made it all about the grandkids, I thought that I wasn’t going to do that. It sounds like when I get my grandkids, I’m going to be just like you, and I’m going to like, forget about you guys.

Emily Stewart 6:18
Yeah, like they we have one of those cameras at our front door, and the second the camera goes off that they’re here, we, like, run out, screaming out, you know, fighting who’s going to get out there fast enough to get the grandkids out of the car, and then we’re like “Oh, yeah. My son’s here too, and his wife’s here too” you know.

Bill Gasiamis 6:35
I love it. I love it. Okay, I’m looking forward to that part. Hopefully my kids get their act together as well, and then they, you know, bring us some grandkids. But I don’t know. I’m not sure, it sounds like a really just typical kind of existence, trying to make do you get to the other end, and now you’re looking for a little bit of me time, new identity, new relationship with your partner, just because there’s no more kids anyway anymore?

The Day of the Stroke

Emily Stewart 7:02
And we were talking about starting a business. I’d always wanted to open a bakery, and we were talking about doing that. And, you know, we had all these big like, hopes and dreams, and then all of a sudden, it’s like, just kidding, you thought you knew what life was about. Turns out you don’t know anything.

Bill Gasiamis 7:18
So what happened on that day?

Emily Stewart 7:20
It was a stroke week. Actually, my husband, in July of 2023 he took a job. We live in the Dallas area and the USA, kind of outside of Dallas, kind of in the country. And my husband had taken a job in 23, in the summer of 23 in a company that’s in Birmingham, Alabama, which is about a 10 hour drive from us. And so he would go two or three times a month. He would travel there, and I just be here by myself. And it was fine, whatever, but he’d done that quite a few times. And then we got to January, and I was like “You know what? We don’t have any kids.”

Emily Stewart 8:03
We have nothing going on. I want to go with you. And he was like, Okay, let’s go. So I booked my flight, and I went with him to Birmingham. So we arrived on a Monday night, and got there, you know, at bedtime. And so we went to bed, excuse me, and that night, I woke up with a really bad headache, and I thought, you know, we we just went on an airplane, and I think it’s just like the elevation changes.

Emily Stewart 8:27
And I had been sick a couple of weeks prior, and so I thought, maybe I’ve got like, a lingering sinus infection going on or something, just this headache and kind of in my face and and head and behind my eye. And I was like, well, it is what it is. I took some medicine. I went back to bed. Tuesday morning, he woke up and he was like, are you okay? And I said, Yeah, I’m going to take you to work, and then I’m going to go to an urgent care. And for those who don’t know an urgent care in the US is like, it’s like, a doctor’s office.

Emily Stewart 8:54
Just a regular doctor’s office, but you don’t have, like, a general practice doctor, that is your assigned doctor. It’s just like, for people like me who are traveling, maybe have a little medical something come up, or it’s not really urgent, but it’s like, you can’t get into your regular practice doctor, and so you go to this place. And so I said, I’m going to take you to the office, and then I’m going to go to this urgent care. I’m gonna get an appointment, go to urgent care, and just, I know it’s a sinus infection, I’m just gonna go get some antibiotics and move on.

Emily Stewart 9:21
And he said, Okay, so I dropped him off, and I on the way home, I was like, I am so tired, and so I stopped and got an energy drink. Bad idea, but I stopped and got an energy drink and drank it. And got back to the hotel and took some meds, like Sudafed and things that were hopefully to clear out my sinuses, and got an appointment, and went over to the urgent care, and when I got in, she said “Your blood pressure is kind of high.”

Emily Stewart 9:45
And I said “Well, yeah, I drink an energy drink, and I, you know, I’m on Sudafed and stuff, and so that that’s on par.” And she goes “Well, just check with your GP when you get home.” And I’m like, okay, that’s fine, whatever. Anyway, met with the doctor. He gave me a prescription for antibiotics and a steroid, and said you’ll be fine in a couple of days.

Bill Gasiamis 10:05
Let’s take a breath for a moment. This part of Emily’s story, the rare surgery, the early days of rehab, the shock of waking up with paralysis, might feel familiar if you’ve ever had to start again from zero. I just want to say, if you’re in the middle of that right now, you’re not broken, you’re rebuilding. And to everyone who supports this show through Patreon or YouTube, super thanks. Thank you. You’re not just backing a podcast. You’re making space for stroke survivors around the world to feel seen, understood and part of something bigger.

Bill Gasiamis 10:38
Now back to Emily as she shares what it’s really like to walk again, one shaky step at a time.

Emily Stewart 10:45
So that night, my husband finished work, I went and picked him up, and we went and had dinner, actually, with a coworker that I’d never met before, and we had dinner with her, and then, actually, three months later, I ran into her, and I did not recognize her at all, and I was kind of embarrassed, but I was like, there’s only one person I’ve met from here, so I kind of just deductive reasoning. It has to be her, but I didn’t recognize her anyway.

Emily Stewart 11:11
So Wednesday, sorry, it’s kind of long winded, but Wednesday, he got up and he said, I said, “I’m going to feel better today” like I’m determined to feel better today, so I’m going to take you to work, and then I’m going to go shopping or something. I’m going to sleep in a little bit, and then I’m going to go shopping a little bit. And Wednesday, I just felt terrible. I just, I couldn’t really describe what it was. I had some weakness on my left side, and still that pounding headache.

Emily Stewart 11:38
And I kept thinking, I’ve just got to get these antibiotics to kick in, like I’ve just gotta feel better soon, wasting my whole trip with my husband, you know. And so Wednesday night, it started to rain really hard, and I had to go pick him up. And so I got in the car and drove to pick him up about 40 minutes away. And when I got there, I really, the blurred vision was really kicking in. And I when I got there, I was like, I shouldn’t be driving. And so I got out and got in the passenger seat, and he drove. And he said, what’s going on? And I said, I just feel terrible. I can’t describe it to you.

Emily Stewart 12:14
That’s nothing I’ve ever felt before. I just feel terrible. And so he said, have you eaten today? And I said, No. And he goes, let’s go get something to eat. It might just be like, low blood sugar kind of thing. And so we went and got something to eat. Didn’t really make me feel better. Went to bed Wednesday night. Thursday, I said, I am just going to stay in bed today. You take the car and go to work. I don’t feel well, so he left, and I stayed in bed, and after a little while, he said, I’m going to come and pick you up for lunch.

Emily Stewart 12:43
So he came back. About lunch time, I had managed to get myself up, get a shower, and I was like, I’m just going to steam all this out. I turned the shower on really hot to kind of steam it out. And I ended up passing out in the shower. And eventually got up, got myself back together, and got ready.

Bill Gasiamis 13:01
When you passed out. Were you standing? Did you collapse? Did you fall?

Emily Stewart 13:06
I woke up on the floor, and that’s, I don’t remember, actually, like passing out, like I’m going to lose it, kind of feeling which I have passed out before, and that was kind of how I felt before, and this time I didn’t, I just woke up and I was on the floor. So I kind of stayed on the floor for a minute till I was sure I got myself together. And then I got up and I finished getting myself ready.

Emily Stewart 13:28
Excuse me with this cough, but, I kind of got myself together. And then he showed up, and when he showed up, he hadn’t taken a room key, and so he knocked on the door, and it took me a little while to get from the bed where I had been sitting over to the door, long enough that he was said he was kind of sitting there, like looking back at the elevator, like, do I go get somebody to come up and open this door for me? You know, like he was starting to really worry. And he came in the room. Finally, I opened the door, and he and I took his hands, like, right away.

Emily Stewart 14:01
And I was like, I’m so unsteady. I’m just completely, like, wobbly. And he said “What do we need to do?” And I was like, I don’t know. You know the decision making now, I know the decision making process was impossible at that time, but I was just like, I don’t know. And he kept saying, do we need to go back to urgent care? And I was like, I don’t know. I don’t know what to do. I don’t know what I feel. I don’t this is totally foreign to me.

Emily Stewart 14:23
And I had actually Googled my symptoms earlier that day, which is kind of terrifying, but I had Googled my symptoms and it said two things, either a stroke or the onset of MS and I was like “Well, it can’t be a stroke, because I’m not old, right? I’m 46 I’m healthy.” I’m literally in the healthiest shape I’ve been in probably 25 years. Like, it can’t be a stroke. And so I just mentally checked that off. And I was like, it must be MS and so when he was like, let’s go back to urgent care, I was like, what are they going to do for me?

Emily Stewart 14:55
You know, if it’s MS like, what is an urgent care not my doctor going to do for me? So I just was like “Oh, whatever, whatever.” And then he said, okay, you sit down. And he kind of took me by the hands and sat me down on the bed. And he said, when he sat me down on the bed and looked in my face, he could see that the left side of my face was drooping. And so then he said, we’re going to go to urgent care. I said, Okay. And he grabbed my phone, and I said, this is the, you know, showed him my phone.

Emily Stewart 15:24
I said, this is the urgent care I went to before. And he and he pulled up my phone and he said, there’s one appointment left for today, and it’s in 15 minutes. So get your shoes on and let’s go. So I put my shoes on and off we went. And he put my symptoms into the registration of the urgent care. And as soon as I got in there, they said “Just sit down. We’re coming to you.” They came out to me. They said, Put your hands up. And I put them up, and it was like, you know, one was up high, and one was like, at my waist, and they were like, looked in my eyes.

Emily Stewart 15:54
And they said, I think she’s having a stroke. You need to go to the hospital and they need to do a scan. And so he said, where’s the closest hospital? And they said, it’s about a mile and a half away. And he was like, great. So we jumped in the car. Well, not jump, but we got in the car and drove to the hospital. And I think they said, we’ll call the hospital and tell them you’re coming. And I don’t know if they ever did that, because we sat for a few hours in the hospital, in the waiting room, just waiting, you know, for them to decide they wanted to treat us or whatever.

Emily Stewart 16:23
And then they ended up, I remember, I have, like, bits and pieces of it, like, I remember he was feeding me Chick-fil-A, and it was a long time later before I was like, where did the Chick-fil-A come from? And he said, somebody from work. I told him I wasn’t coming back because we were in the emergency room. And he sent us Chick-fil-A, and he’d been feeding me like a bite of Chick fil A, but I remember taking a bite and then just being like, so tired, I could not hold my head up, like, just put my head right back down.

Medical Diagnosis and Surgery

Emily Stewart 16:51
And he’d give me another bite, like, come on do you want another bite? You know, like you do with a toddler, like, you can do it, come on. You can do it. Just one more bite. And I would, like, take a bite and then head back down and just kind of basically go back to sleep. I wasn’t ever unconscious, but I was basically asleep. You know that whole time.

Bill Gasiamis 17:08
Are you guys the type of family that food fixes everything as well?

Emily Stewart 17:12
Yeah, absolutely. And so Addie was like, same thing, like, your blood sugar’s low. You haven’t eaten today, which I don’t have a trouble with blood sugar, but that’s kind of something that we always say you gotta get a little energy in you, you know, kind of thing. And so eventually they did the scan, and they said she has arterial carotid artery dissection, and her right carotid artery, and they said, the inner lining, you know, for those who don’t know, it’s like an inner lining and outer lining of your carotid artery.

Emily Stewart 17:46
And the inner lining was kind of had come away, and was kind of closing up the artery a little bit, right, blocking the artery, the little flap and so it, they said, the way we this is very treatable, we give you IV blood thinners, and we’ll just do that overnight, and then we’ll do another scan in the morning. I said, Okay, and so they started doing that, put my IV in and started the blood thinners, and my husband said, I just got less and less responsive as the night, when I got to where really all I did was sleep and just he would try to talk to me, and I couldn’t really communicate anymore.

Emily Stewart 18:24
And the morning came, and they did a scan, and then they decided, and again, because I was not really there for this part, I don’t know exactly the situation, but they decided that hospital was not sufficient, and that I needed to be transferred to another hospital, which is actually a huge miracle, in my opinion, that I happen to be in this city where there’s a teaching and research, neurological research and teaching hospital, and so UAB hospital. Shout out to UAB.

Emily Stewart 18:59
They transferred me to UAB hospital and via an ambulance, and by the time they they took me in an ambulance, and my husband drove, and by the time he got there, I was already in surgery, like they had taken me right away, because they said that flap that had come away from the outer part of the artery is now 100% blocking that carotid artery, you are 100% blocked. And so they said, they told him, you know, we do this surgery. It’s fairly routine. It’s about a 90 minute surgery, and we just go in with a scope and it’ll be fine.

Emily Stewart 19:37
And so that’s what he planned for. They said, we usually get about 50% opening, which is really great, and it’s about a 90% success rate. And so that’s what he went in, thinking an hour and a half, we’ll have some some good success, and on with life, right? And so they sent him to a waiting room, and obviously I was already in surgery. And hours went by, and just hours and hours went by. And I think he ended up being in there five hours. And finally the doctor came in and he said, she’s fine, but we had some complications.

Emily Stewart 20:16
And proceeded to explain that they went in, he went in through my right femoral artery to try and get up the right side, and couldn’t get the scope in enough to put a stent in. And so for whatever reason, he decided he was going to call a vascular team and a vascular surgeon to come in. And so he called this vascular team who happened to be out, just out of surgery, happened to be available, happened to still be in the hospital, to come in, and they went through my left carotid artery up that side and up and over from the top.

Emily Stewart 20:50
And when he got to the top, he told the surgeon, I can see now I’m going to go ahead and place a stent here, because I can see it. And so he placed it. And when he placed it, the surgeon that was still in there, from the under part of the carotid artery could see an opening, and so he placed a stent too.

Emily Stewart 21:07
So I actually have two stents that overlap in my right carotid artery, and they were able to get 100% blood flow, 100% opening back up again. Yeah.

Bill Gasiamis 21:20
Wow.

Emily Stewart 21:20
So it’s in my opinion. I mean, I know everybody doesn’t believe religiously what you will, but I see all of this as miracles, and I am grateful for everyone you know.

Bill Gasiamis 21:30
Why not? As if it’s not miraculous that two humans can open up your arteries on either side of your body and drive something through every blood vessel and get into the top.

Emily Stewart 21:42
From your leg, your groin, all the way up to your head, and me they’re in the middle.

Bill Gasiamis 21:49
And see each other. “Hello, hello” as if that’s not a miracle.

Emily Stewart 21:54
And it’s really amazing, because I went to the dentist fairly recently, and he took scans. And he’s a friend, a long time friend of ours, and he’s like “Oh my gosh, this is so amazing.” And I was like, what? And he goes, have you ever seen your like in an x ray? And I was like, my stent? And he said “No.” And so he took a picture of him, and he was like, Look at this, and he and he sent it to me, and I was like, That is phenomenal. You can see exactly where they overlap. And it’s, it’s phenomenal.

Bill Gasiamis 22:18
Yeah, it’s a proper bragging the bragging rights, the surgeons, the scientists, the guy who invented the little thingy majiggy that goes into.

Emily Stewart 22:28
I know, exactly.

Bill Gasiamis 22:28
The guy who invented the thing that you know, goes, the ladies that are there that are doing that stuff and the like, the whole entire thing the hospital that exists in the way that it exists, like every single part of that thing, is a miraculous thing, and it wouldn’t exactly it’s not meant to be possible. You’re not meant to do that to human beings.

Emily Stewart 22:53
Well and all of that aside, where we live in, outside of Dallas, we’re like, 45 minutes from the closest hospital that could have even tried to handle this situation, and I would have been alone. I’m out on property, like, away from everybody else. I’m like, had I not been with my husband that week? I really do believe, like the sleepier I got, I probably just one night would have gone to sleep and just not woken up. Yeah, no, and he wouldn’t have known, it’s wild.

Bill Gasiamis 23:24
Yeah, a completely different outcome that would have been. There’s so, so many blessings there. I mean, you just, you can tick them all off. We’re here, we’re talking about it. That was 2024 I mean, we’re 2025, that is a short amount of time for somebody to end up in the condition that you’re in, which is an amazing outcome, like, it’s just brilliant. And, you know, I often say, and I know not everyone has the same opportunity and luck, and things don’t go well for everybody.

Bill Gasiamis 24:00
I totally get it right, but we need to make sure that when they do go right, that you pay attention and that you let you know you accept the fact that they went right, and then you do something positive with the fact that now you have the opportunity to take things in your life and achieve more things that maybe would have been robbed from you if you didn’t go to that trip with your husband. Like, do you know what I mean? That’s the kind of game that I play.

Bill Gasiamis 24:27
I play that game. They opened my head, they found a blood vessel, you know, four centimeters or two and a half inches in from my ear into the middle of my head. Like, they found that, they pulled it out, they fixed it up, they closed my head and they sent me home. I mean, like, as if.

Emily Stewart 24:45
Yeah, my one day in therapy, when I went to inpatient rehab, I got emotional because I was like, I just am so, you know, you get emotional. It’s emotional, and I was emotional, and my therapist said “You have to look at how far you come.” Like you literally, a week ago, you had people in your brain, like messing around in there, you know. And, yeah, you should be tired, you know, you should be exhausted. That is completely normal, and it’s just that perspective, yeah, it’s just crazy.

Stroke Fatigue Recovery and Finding Blessings in the Unexpected

Bill Gasiamis 25:21
It takes a time, a little bit of time, to adjust and come around and notice what the blessings are. Even when the outcomes have been worse or more debilitating, or whatever, the outcomes are always in someone, if someone can do like, what’s good about this? Not that, not this is good, but what is good about this terrible situation? There will be something that you can find. And if you can’t find anything, you need to look harder, because there’ll be something and then you need to work on that.

Bill Gasiamis 25:50
You need to use that as a leverage to continue sort of finding the blessings, the things that went well, relationships, whether it’s you know, the people you met, the people that helped you, the researchers that you never met, that did the work that made it possible for the doctors to do the like, there’s blessings everywhere. You just gotta well.

Emily Stewart 26:11
And as we were leaving, the doctor actually came out and was talking to us, and he said, as far as I know, this procedure has never been done this way. And he said, I think I’m going to write a medical journal about it. And I said, that’s great. And he was like “Do I have your permission?” And I’m like, Absolutely. He’s like, I won’t use your name. I’m like, I don’t care, whatever. But he you know, he’s like, as far as I know, this has never been done this way.

Emily Stewart 26:34
And I had mentioned that to one of my siblings, and he said “You know what, if all of this was because at some point down the road, there’s somebody else who needs to have the surgery done this way.” And now they’ve tried it, and it was a success, and they know that, and you know, now they have it as a data point to be able to go “Hey, what we’re doing isn’t working. Maybe we try this other way instead.” You know, yeah, it’s like I hadn’t even thought of that.

Bill Gasiamis 27:01
Why not? I love that, and it’s great. I had a when the blood vessel burst in my head and it bulleted over the three years, they had this theory where they do nothing, they just kind of let it sit, and they monitor the blood vessel to see if it stops bleeding over a period of time. And they kind of make a judgment call. They try and determine whether or not, if it bleeds again, is it going to be a catastrophic bleed, like, what level of bleed? They kind of try and make all these assessments. And then, for us, they kind of determined that the type of bleeding that it was doing was relatively safe.

Bill Gasiamis 27:40
I don’t think they use those words, but they’re the only words I have, relatively safe to monitor. So they monitored it, and then, and then it bled again, and then it bled again. By the third time, is when they made the decision, okay, this thing is going to complete, continue bleeding. But in the meantime, what I didn’t realize, and I think was happening, was, there was a school of thought that said, if we leave it bleed, and the person is, you know, 90% there and happening, and everything is working, and yet the they’re experiencing deficits.

Bill Gasiamis 28:15
They’re not working, they’re not driving, but they are quite well and healthy. Let’s not intervene by opening their head and potentially making matters worse. And it’s like, that’s cool. I get it. So come forward now, 12 years my friend’s daughter, my friend who helped me through my worst time in that situation that happened to me, worked at hospitals. He was a radiographer, and he got me into the best hospital in Melbourne with the best surgeon, pretty much in the country, if not Melbourne, sorry, in Melbourne, at least, if not in the country.

Bill Gasiamis 28:51
And then he would, he would do the scans, and he would then come out and tell me I would I didn’t have to wait for my appointment to learn what my scans looked like. There’s a little bit cheeky, right? But we got over the line on the inside, yeah, I’m never going to mention his name. So then what happened was, 12 years later, I get a phone call from him. His daughter has, the 17 years old, has the same bleed in a similar location.

Emily Stewart 29:22
I heard you’re talking about this in another podcast. That’s crazy.

Bill Gasiamis 29:26
And then it’s like, what is going on? I cannot understand what is going on. Why is this happening? And and now we’re trying to kind of wrap our heads around it. And there, as a couple, his wife and him are trying to work out what’s going on and how they’re going to sort this out. Doctors that they know from their background, they know doctors. There’s people coming around from everywhere, and they have discovered over the last 12 years that an awesome intervention is to enter the the skull and the brain through a small little.

Bill Gasiamis 29:59
Hole and put a tube in there and drain the brain out the blood out. So they went from my version, which was, do nothing, just watch it, and they were trying to do the most non invasive way to kind of handle people like me. So with me, eventually it was surgery. They opened my head, coronavi, the usual stuff, but for her, it was just a little hole and a tube and a device that drained the blood out. So she went from having a catastrophic bleed to having no blood in her head within hours, but still a serious condition, right? She was in ICU, she was in a coma, the whole works.

Bill Gasiamis 30:42
And you see her now, and you think she has some deficits, and she’s experiencing some pain in her leg and all that kind of stuff, I think, on the left side as well. And you see her now and you think, wow, like that. That’s how far they have progressed in 12 years. And it’s simply because somebody would have gone exactly what this guy’s we’re stuck here. We don’t know what to do, but let’s just try. And we’re probably going to cause damage in this other way anyway, so we’ll do this anyway.

Bill Gasiamis 31:14
They got they got an outcome, and I think the same thing would have happened with this other medical situation. They would have said, let’s put a little hole in there. Let’s try and be non-invasive, and let’s see what happens, and monitor this patient. And it’s the blood in a brain hemorrhage. It’s the blood in the brain that causes the damage. It’s not necessarily that the blood vessel has a hole in it. That’s a problem because blood is still flowing through it, but it’s the pressure on and, but it’s too much blood is entering into cavities where there’s no space for it.

Bill Gasiamis 31:47
And then it puts pressure on brain tissue by squeezing up against it, and it causes pressure, and it causes damage. That’s so they’ve worked out this new method. So it’s wild, somebody was patient or zero, like one, like you, somebody was that person. And if that person is ever listening, well, you know, you’ve done an amazing service to the people that come after you.

Bill Gasiamis 32:13
And I feel like that’s kind of what our job is to do us, to take our thing that happened to us and turn it into a I’m going to use the word service, but to use it in service of people that are going to come after us and they’re going to experience what we’re going to experience. You know, that’s the only way I kind of would be able to extend it all.

Emily Stewart 32:34
What is saying that flowers grow best in manure, or whatever that saying is like, that’s really what we’re doing here, is we’re, we’ve been given a whole bunch of manure, let’s grow some roses.

Bill Gasiamis 32:46
I love it. Yeah, I would have been a little bit blunt about it, but I like the way that you did it. That’s cool. So, what happened after you woke up and you were kind of getting better, and then I imagine you realize there was some deficits that you had to deal with. What was that like?

Stroke Fatigue Recovery and Therapy

Emily Stewart 33:06
So I woke up on Friday, so surgery was Friday. I don’t exactly know when I woke up. I was in the neuro ICU for a little while. I think they transferred me maybe Saturday or Sunday to a normal wing of the hospital, non-ICU wing of the hospital. But when I woke up, I had complete paralysis on my left side. My speech was very slurred, but I could get it out. You know, like enough, just really, like, I just found a video on my phone of me trying to talk to my daughter, like my daughter was sending me daily, like, get ready with me videos.

Emily Stewart 33:46
And she was like, so today I got up and I went to the gym, and I found this video that I had made for her that was like, I went to the gym too. But today it consisted of trying to move my left hand, you know what I mean? And you can barely understand what I was saying, but I but I was saying something. I had some abilities still to speak. I my recognized my family, which I was so grateful for. I know at one point you woke up and didn’t recognize your wife, right? Yeah, thankfully that didn’t happen.

Emily Stewart 34:14
My husband was terrified of that and and thankfully that didn’t happen. It was really just that left side was really, I couldn’t move it at all. And so Friday, or Saturday, when I woke up, they kept trying to get me to move in the in the nurse, this big burly guy, he would like squeeze my hand, and he’d say, okay, squeeze my hand. And in your brain, it’s really impossible to describe to somebody, but my brain was saying squeeze. And my brain really thought it was happening, right? But nothing was happening with my hand.

Emily Stewart 34:50
And he would just kind of look at me and smile and go, good job, you know, you’re doing so great. And I was like, and then he’d look at my husband like things happening, you know? But we just kept trying, right? Because that’s what you do. And so we just kept trying and trying. And eventually we’re car people. Our family is and so my husband on, I think it was Saturday or Sunday, he got down at the end of my bed, and he started, just like, massaging my leg, and he’s like, if you want to drive our manual transmission car again, you’re going to have to move these legs.

Emily Stewart 35:23
And so he’d like rub my leg, and then he’d say “Okay, now push the clutch. Push the clutch.” And he’d push against my foot. And I would try really hard. And I think it was Sunday, my foot just moved for the first time that, you know, clutch, clutch, push, wow. And as soon as the nurses heard that they were they were all over. They’re like “Let’s Get up. Let’s get going, you know, let’s get walking.” Then I’m like “Okay, I just moved.” So they had me up walking, like, quote, unquote, walking by Monday.

Emily Stewart 35:51
So surgery was Friday by Monday. They had me up walking, you know, four steps, and then I was exhausted and have to go back to bed. And they were like, what’s your goal? And I’m like, I just want to walk to the bathroom by myself eventually. And they were like, well, that’s going to be a while. And I’m like, I know, but let’s try, you know? But I still really hadn’t moved my hand at all. I still had this really, like, tight grip on my hand, and that was really upsetting to my husband. He would come over and just hold my hand and squeeze it and say, come on, just try.

Emily Stewart 36:21
And I was like, I am, you know, in my head, I was like, arguing with them, like, I’m trying. I am trying the best I can. I’m doing everything I can. But the reality was, nothing was happening, and then it was like, Tuesday morning. All of a sudden, he squeezed my hand and he said “Good morning.” And he squeezed my hand, and we actually have it on video, which is really precious. But squeezed my hand and I squeezed it back. And he was like “Yes, that’s it.” And so that was the first, like, any kind of real feel I got in that left hand.

Emily Stewart 36:48
So really, from just Friday to Tuesday, which, in the grand scheme of things, is pretty quick to get some movement back on my left side. And so by Wednesday, they were like, well, let’s get you out of here. And so my husband, they said, she needs to go to inpatient rehab, and so he started Googling, like, best inpatient rehabs in the United States, and one was in Boston or Pennsylvania or something. I don’t know where it was, but the second-best one was actually in Texas. And he was like, okay, we can do this again. Those little mercies, right?

Emily Stewart 37:21
Those tender mercies you see, you see the miracles. And he’s like, there’s one bed left in this place, and it’s the second best place in the US. And so we’re going to leave tomorrow, and we’re going to drive the 10 hours home and stay for one night and then check you in the next day, drive the three hours down to where this place is and check you in the next day. And so that’s what we did. And when we got there, they said, we tell people two weeks to three months, we just don’t know until we do all the evaluations and whatever, and how long you know you’ll be here.

Emily Stewart 37:54
And I said “Well, I got things to do. I’m going to get out of here soon.” And so I ended up staying two weeks in inpatient and just two weeks to the day, and had an amazing experience there with my amazing therapist, one of which, who happened to be from Birmingham, Alabama, which is where my hospital was. And so that was actually a real treat that we had, that that connection, and she was fabulous, and I did speech and occupational and physical and music therapy, trying to think what else they had some like, recreational, you know, games and stuff like that.

Emily Stewart 38:35
But really it was like just all day, every day for two weeks therapy from 8am till dinner time, it was half hour PT, half hour OT, then arrest, then speech, then PT, then OT, you know, it was just all of that. And I think my my therapist, because I had, I regained my mobility quite quickly, and I think it was kind of a treat for them. And so my physical therapist, I would joke, like, she’d pull out this thing, and she’s like, today we’re going to try something new.

Emily Stewart 39:05
And I was like “Well, you do it first, because if you can even do it, then I can do it, because I just learned how to walk last week. So you do it first.” But she did some really hard stuff, like I had. She said, What kind of things do you want to get back to? And I said, we love DIY, like, we do stuff around our home, we remodel our home and things like that. And I really want to get back to that. So like, day three, I want to say three or four. She was like “Okay, today, here’s a ladder, and you’re going to climb the ladder and grab the bean bags off the top and then climb back down.”

Emily Stewart 39:36
You know, this is your PT for today, and then do a push up at the bottom, then climb back up and back down. And I was like, it was exactly what I needed. You know, it was very catered to me, what I needed and what I was looking for. And it was a huge blessing. So after two weeks there, they sent me home, and I did. There’s a great facility here in Dallas, about 45 minutes from our house. It’s called Day Neuro, and it’s kind of like inpatient where they have physical therapy, occupational therapy, speech therapy, and a neuro psychiatrist on staff.

Emily Stewart 40:14
And so you just go and you do all of your therapies there during the day. So we would drive in the morning, the 45 minutes, and do the therapies all day from like nine to three, and then drive home, and then we go back the next day and do the same thing. And they would just have you in this rotation of you go straight from your physical therapist to your occupation, and so on, all day long. And that was really great.

Emily Stewart 40:38
And I did that for two months, and then they were like, well, we’re done with you. We’re you’re basically graduated and so on. You go off into the world. And I was like, okay, and since then, I’ve just been doing around my house and whatever I can do.

Bill Gasiamis 40:55
What was it like getting home? Was there any little setbacks did? Was it a little bit difficult?

Emily Stewart 41:02
I felt really, you know, still, the fatigue was huge. I mean, the fatigue, I think the fatigue is probably my biggest battle. It’s my biggest deficit, in my opinion. Because, you know, sometimes I feel like my body’s up for it, but I do a little bit, like, I said before I was a mom, and I went, 24/7 and I still have that mentality of, like, you can still go, you can do eight loads of laundry today and be just fine.

Emily Stewart 41:30
But in reality, I walk down the hall to my laundry room carrying a basket, and I’m tired, and so I barely get it in the washing machine, and I’m like, I gotta go lay down for a little bit, and so those, I think are the biggest deficits, the most eye opening was, now you gotta do it on your own, figure it out. And I think we’ve done okay. I think I still may end up at some point going back and doing more, maybe speech therapy, just for the cognitive side of things.

Bill Gasiamis 42:08
It’s really early when this thing happened.

Emily Stewart 42:13
It was January. So what are we in 13th months? Yeah, it’s like, 14 months now, which everybody keeps telling me, and I get that. I get that it’s early, because I still feel and see the deficits. I won’t stop till I don’t know that I won’t ever not see them, I actually one of the biggest gifts for me personally has been this podcast, because I found it just a couple months ago, and I was I never, I haven’t done like, therapy or group support or anything, because there, it just really doesn’t exist right here where I am.

Emily Stewart 42:51
I’d have to travel long distance and and so that’s not really an option. I was listening to your podcast, and somebody talked about a like, online support groups. And so I’m going to look into that a little bit. But I just when I found this podcast, it made me feel like, more normal. I don’t know what the words are like, not more normal. But like that, what I was experiencing was not abnormal, you know? Because until that point, I was like, I don’t know a single person who has experienced this, my family is a million times like more supportive than anyone would ever expect, not expect.

Emily Stewart 43:30
But everyone, anyone would ever need, but which is amazing, but they, like you’ve said before, they haven’t experienced it, and I don’t want them to experience it, but they don’t. They don’t quite get it, and so it’s really hard to be like, I’m tired, and they’re like, what does that mean? What does that feel like? And I’m like, not like, I need to go take a nap. Just like, my brain, my head is going to fall off, like, that’s what it feels like, you know.

Bill Gasiamis 43:56
A feeling version and they try and understand. So they compare to their to I’m tired. I’ve been tired too, dude. Yeah, I remember that tired. I wish I had that tired. Like it’s a completely different one I had. We went out to dinner last night, six of us, eight of us, and we were just chatting about different things. And I’m unshaven today, and normally I like to shave for my podcast episodes. It’s the only thing I like to do is just so that I’m cleanly shaven. And I didn’t get around to it yesterday because it didn’t have shaving cream.

Bill Gasiamis 44:33
And I wanted to go buy some shaving cream, and I was going to buy that when we were going out, but we were running a little bit late. I didn’t want to be late at the restaurant, so I just skipped it. And I thought, I’ll buy it this morning, and I’ll shave this morning. Well, I woke up with a massive headache, forget about it. So one of the things that happens to me is one of my deficits. And I don’t know why we got into this topic, but I have a very curious a family member who just asks me all the dumbest questions, but like, they really come from curiosity.

Bill Gasiamis 45:06
And I love that, I love that he asks because then I can try and explain something that I’ve never explained before. And he asked me the question about, like, what shaving cream do you use? I’m like, well, this, this particular brand is going okay, and why do you need new razors? You don’t even need a shave. And then I had to explain to him, I don’t need to shave because of the podcast, the whole story. And I couldn’t believe I was even in this conversation with this guy.

Bill Gasiamis 45:33
He was frustrated. And then he goes, What do you shave with? You shave with a electric shaver, or do you shave with a razor blade. I’m like, dude, like, what are you talking about? I shaved with an electric razor and a handheld razor blade. He goes, that’s different. Why do you use both? And I said “Well, I use both because the electric shaver is more gentle on my face when I scrape on my left side with a razor, it make it hurts like it pulls every single hair follicle and it makes my face hurt.” And it goes “Oh, he goes, have you tried a fresh blade?”

Bill Gasiamis 46:17
It doesn’t hurt on my right side? No idea. Yeah, it’s on my left side because my left side has got a neurological deficit, and what happens is, if I use shaving cream and the electric razor and I trim them and I make it a little bit shorter than they currently are, what will happen is, when I use the razor, it’ll pull less and the shave will be a little less painful.

Stroke Fatigue Recovery And Living with the Invisible

Bill Gasiamis 46:41
Yeah, that was a 15 minute conversation, just trying to get him to wrap his head around my left side deficits. And then eventually he goes, how it been impacted, and then eventually the only thing he come up with was, well, that’s, that sounds really bizarre.

Emily Stewart 46:59
It’s real, I know. Like, when I when people are like, What do you mean? Like, your left side is numb, like you can’t feel anything. I’m like, No. Like, you know when your arm goes to sleep and it’s starting to wake up and it’s like, pins and needles. I’m like, that’s what my left arm feels like all the time, all the time, just that pins and needles. Like, waking up, I feel like I just need to shake it out really a lot, and that’ll just make it like, wake up, but it doesn’t wake up. And so that people have kind of responded to that, like, okay, that I can, I can feel that.

Emily Stewart 47:28
That’s a very common feeling, I think. And so people are like, Okay, I recognize that, but, yeah, but the tired, I don’t think people really get it. I know one of your guests, said that it felt like being hungover, and I’m not a drinker, and so I’ve actually never been hungover, but I was like, but even that, I could explain that to people like that, that tired feeling of like my head is just wobbly, maybe that hungover, like, I don’t know, it’s hard because you can’t, people can’t understand it unless they’ve experienced it.

Emily Stewart 48:01
So I’ve been really grateful for this podcast to hear some of those things that I’ve felt. And been like, Okay, I’m not the only one. Like everyone else who’s experienced this has felt the same things. And that’s that’s really reassuring.

Bill Gasiamis 48:15
And you can kind of live with a lot of it, like, probably live with it, even though it’s so annoying and frustrating and you always have the comparison. I have my left side to always compare to my right side. And I was wondering, like, if they were both the same, would it be less annoying or challenging or difficult, because then at least my body would be the same everywhere.

Bill Gasiamis 48:43
Whereas now it’s I always have a comparison. Always this side feels like that and and they always compare the two some days, I go through the day without becoming aware of my deficits, and then one day, I wake up in the morning and they’re there all day, and they’re annoying me all day, and I’m doing what you described, like I’m doing this with my hand, trying to loosen and shake it, whatever, and it doesn’t come.

Emily Stewart 49:09
I was in the airport with my daughter. We’d just gotten off of the three hour, I think, like a three hour flight, and I was kind of, you know, you’re slow to move again after sitting for a long time. And so I’m slow to move, and I’m kind of moving, and we stopped at the elevator, and I started just like, stomping my foot. And she’s like, What are you doing? I’m like, I just am trying to get it to wake up. I just needed to wake up, yes, but I don’t know. You don’t want it like you said. You don’t want them to understand, but you also are, like, trying to put it in terms that they can relate at least.

Bill Gasiamis 49:43
I do the same thing with my foot. In the morning when I wake up, I just make sure that it’s on the ground and that I’m stepping and I’m using my ankle like I’m just testing, making sure the ankle is kind of still flexible and working. Otherwise, if I get up, I could, and I have, almost, in the middle of night, fallen a couple of times. So it can be a bit dramatic.

Bill Gasiamis 50:03
Wow. So, you would have been like, quite a stoic human being for kids, you know, all the stuff that you had to do to get through, like, do you? Did you get tested, emotionally, mentally? Did you find times where it really impacted you.

Emily Stewart 50:28
You know, I don’t think there were, like, specific, how do I say, like, long-term times? I feel like I have moments and I feel like it’s important to let yourself sit in those moments like, like today or yesterday. It wasn’t today, it was yesterday. When I woke up, I we had family coming into town last night, and so I was like “We got I had kind of left a few things to do because I’d felt good all week.” And I was like, Okay, tomorrow, I’m going to do all of these things to get ready for them to come.

Daily Life and Adjustments

Emily Stewart 51:01
And then when I woke up and I just felt like garbage, just so fatigued in my left side, my hand was really the spasticity was like, big time in my left hand yesterday, I was like, well, now what? And I have those moments where you just kind of break down, and I think it’s okay. In my opinion. I think it’s healthy to have those moments to let yourself just cry it out, or whatever emotion you feel, just let it out, let it go.

Emily Stewart 51:29
And allow yourself to feel that for just a minute, and then you have to stop and look back and say “Okay, today is whatever, we’ll count today is done because it’s garbage today I may not get anything done.” And my family is so great that when I say today is not a good day, that’s all I have to say. And they jump into action, and they’re amazing. And my husband and my daughter, who is living with us till she gets married next month, and my daughter in law, cleaned the house and just got everything, change sheets, and did all the things that I had planned to do.

Emily Stewart 52:05
And were so amazing. But I think it’s really important to just when you have those moments, give them the minute that they deserve. Because I think it’s okay. It doesn’t show weakness to to cry it out, in my opinion, like let it out, let it go, and let people see that you are still impacted by it, and then pick yourself up. And my mother in law says, pull yourself up by your bootstraps and just get up, get walking, you know, and get on.

Emily Stewart 52:35
And I it’s so important to just, I think you have to just keep that big picture, you have to keep zoom out if you’re just think about the hike. My husband and I used to love to hike when we lived in Arizona, and so there’s this hike that we went on one day we used to go early, early in the morning, like before the sun even came up. And one day we were hiking, and I had a headlamp on because it was too dark. And so I was just looking down.

Emily Stewart 53:04
And I was like, walking, just following where the headlamp was taking me, you know, and trying to see where I was going. And I was so focused on these steps right here in front of me. And then we get little further up, and my husband goes “Oh my gosh, that’s the most beautiful sunrise.” And I was like, I was literally so focused on one foot in front of the other, right in front of me, that I missed this, like, beautiful sunrise that had happened. And so I think that’s kind of what happens even in this stroke recovery, where we’re really focused on our, you know, I can’t do this today.

Emily Stewart 53:36
My deficits are such and, you know, I used to be able to, whatever, instead of, like, kind of zooming out and going, okay, but where was I a year ago? Where was I a month ago? Where was I six weeks, you know, and being able to see kind of a bigger picture, I had an Instagram memory pop up yesterday that said “Today I walked 1.5 miles in the most glorious weather I’ve seen in a long time, and it’s the farthest I’ve walked in my recovery” and it was from a year ago. And at this point, I walk every single day because like you, exercise is important.

Stroke Fatigue Recovery: Daily Life and Adjustments

Emily Stewart 54:14
I feel like that’s something that really, if I don’t get my walk kind of first thing in the morning, my brain does not connect to my body, and so I never walk now less than a mile and a half. And so I was like, this is one of those moments where you have to zoom out and look at the bigger picture and say, okay, a year ago, a mile and a half was as far as I could go. And I’m sure I was exhausted when I got back.

Emily Stewart 54:35
And now I’m a year later, and it’s the least. A mile and a half is the least amount I’ll do, you know, in a day and so give yourself credit for those you know, those little steps of progress that you make along the way.

Bill Gasiamis 54:51
I love it. So I love your zooming in and zooming out things. So in all of the terrible stuff that was happening during COVID and lockdowns, and all the things we’re seeing on TV and social media and everything. I had this thing where I was trying to tell people to zoom in. So imagine living in Australia and getting updated like I was living in Australia, in Melbourne, the most locked-down city for two years. We were pretty much locked down the entire time, and at the same time.

Bill Gasiamis 55:20
All we’re seeing on all of the screens that we that we use during the day is every other country and all the terrible stuff happening in every other country. It’s like “Oh my God.” Like, this is never going to end. We’re going to be locked down forever, and then it was like, how do we how do I snap myself out of feeling and thinking like that was like, okay, zoom out to that was no good, zoom back in. Forget all about that. Shut it all out, go local.

Bill Gasiamis 55:49
What can I do locally? Okay, I was allowed to, I can’t even believe I’m saying this. I was allowed to walk five kilometers. I was allowed to go past my elderly parents house see them, we were able to connect on zoom with other family members and all that kind of stuff. Like, how’s everything happening locally? There was I could go to the cafe down the road and pick up a takeaway cafe and that coffee and that so locally made it a lot easier, even though it was strange and a lifestyle that I wasn’t used to, because there was so many restrictions.

Bill Gasiamis 56:25
You could still go out into the courtyard, I’ve got a little courtyard, and you go out, you could see the sun, and you could just zoom back in to where it was more contained and more easy for you to focus on, right? And you’re doing that when you’re walking, but you were in a space where what you needed to do was see the bigger picture. You’re just focusing on a step, but there’s a sunrise, and you missed it because you didn’t look up to have a look at it. And it’s like, I need to be focusing up and looking at that. Are you there, Emily? You’re back.

Emily Stewart 57:03
Yeah, there you are. Sorry, I don’t know what happened. I lost you.

Bill Gasiamis 57:05
Yeah, alright, we’re here. So what I was saying was, you’re on the trail, you’re walking, and you need to zoom out because you’re focusing so, you know, hard on one little small part of the entire walk, there’s a whole sunset, a whole sunrise, a whole sky, the clouds, the trees, everything else. And that’s a great game, like, if you can play that, regardless of what situation you’re finding yourself in, you’re going to be able to control how things are impacting your emotional, mental and physical state just by being able to go “Ah, okay.”

Bill Gasiamis 57:45
Now narrowing my focus too much. Need to look at the bigger picture. Looking at too many things out there. I need to narrow my focus again and come close. I love that. It’s a very simple way to control your the way that you’re experiencing things. Now, if it’s okay, I would love to mention your Instagram, because you focus on some topics there that are a little bit different. I’m going to have you share it. And I wonder the big question here is, I wonder whether the adversity that you’ve faced before has helped you with this particular challenge. Tell me a little bit about your Insta.

Emily Stewart 58:24
So my Instagram started, actually, I don’t even know how long ago, maybe three or four years ago I started, goes way back further than that, but when I was eight years old, my hair started to fall out, and it was like falling out in patches, in various spots all over my head. And so my parents took me to, multiple doctors. Eventually they end up finding out it’s something called alopecia, which is just a hair loss General.

Emily Stewart 58:52
Alopecia is just a hair loss disorder. Mine was alopecia areata, which means it falls out in areas or spots, and over time, it’s kind of evolved into, like, where I didn’t have any hair, like when you’re when you’re pregnant, and your hormones are kind of going crazy. My third baby, I basically lost all of my hair, and so three, or maybe it was four or five years ago. I have three daughters, and I have always really kept it under wraps. I wore wigs, this is a wig. I’ve always worn wigs because, you know, I wanted to feel like I looked like everybody else I didn’t.

Emily Stewart 59:31
The last thing I wanted was to draw attention to myself. And I have three daughters, and so I started to feel like, you know, you raise these girls to be strong, independent women and to be proud of who they are, that they have value, and they’re important, and you’re hiding is really what it came down to. And so I decided that I was going to put it all out there. And so I took my wig off and I went to Instagram, and I made an account of pictures of me, you know, and what I had gone through.

Emily Stewart 1:00:07
And my initial purpose was really to share with people who were experiencing what I was experiencing, the hair loss, and give them some tools, like how to buy wigs, like how to find good online, you know, reputable companies to purchase through those kinds of things, and just experiencing life in a way that was not impacted by my hair loss and show my girls and my family and everyone else that like you can still have this thing happen to you and still be something important and still be something special.

Emily Stewart 1:00:40
And so that’s why it started. And then over the last year, as things evolved with me and my stroke and my physical health, my husband came, I had really felt a push to, like, change it like I want to reach a broader spectrum of people who are going through things. Because this is one thing that I went through, and now two things that I’ve gone through, but I want to reach a broad spectrum of people who are going through things and just help them understand that you can go through it and you’re still important.

Emily Stewart 1:01:12
And you still have value period, regardless of what you’re going through, and so I changed it. It was originally owning alopecia, and I changed it to owning adversity, owning.adversity, so that when people come to my Instagram, I want them to leave just having more information, having more light, having more joy and just having perspective, I think, is the most Important thing.

Bill Gasiamis 1:01:39
You know, when I was in a wheelchair for about a month, I kind of became aware that people in wheelchairs aren’t just sitting down or just hanging out. There’s a whole bunch of stuff going on in the background, in their life that I can’t tell or see, you know, but it’s not just, you can’t walk, sit down. No worries you’ll be fine. Just push the thing around. Like, I really became aware of how ridiculously, like, close minded, stupid.

Bill Gasiamis 1:02:17
I was like, I won’t even be I need to be, like, really dramatic about explaining that, and then on your IG like, when I see, when I’ve heard about people with hair loss or alopecia. We have a cousin who lost his hair in his 20s, but he kind of lost male, male pattern baldness, you know, which means he’s got a little bit of hair left, but it’s nothing to do anything with, and he just shaves it off. And there was a time in there was a time in our kind of relationship, in our when we were younger, when we said him, just get a wig, man, like it doesn’t matter, like you’ll be fine.

Bill Gasiamis 1:02:56
You’ve got a nice shaped head, even when you’re bald. That suits you know, we just just rub say dumb things, you know, that kids do to each other cousins and that say to each other. And then I’m looking at one of your photos, where you’re wearing a wig cap, and what it’s done to your head over the entire day. It was irritated, it’s left lines and all that kind of stuff. I mean, it’s not just as simple as, like, just put a wig on and everything’s going to be fine.

Emily Stewart 1:03:28
Yeah.

Bill Gasiamis 1:03:30
And it’s, again, it’s the same moment. It’s the same moment that I experienced when I was in the wheelchair, I’m going “Ah, okay, I get it now.”

Emily Stewart 1:03:44
And that’s my biggest thing is that I it’s important for people like I used to do a lot of like, going to high schools and talking to teenagers in high school groups and talking and I’d like do this dramatic like, whip my wig off and show em, you know, what if everything you thought you knew was a lie kind of thing? And I’d, you know, you look at me and think my life is perfect and whatever, and it’s pretty awesome. But what if this was the reality, and I’d wake rip my wig off and whatever, and it was pretty dramatic.

Emily Stewart 1:04:16
But really, what it comes down to is, like, it’s important for me to make people who are around me feel like they’re important, their value period, like regardless of what you’ve been through, what you’ve done, who you are, who your family is, or your history has, you know shown is that you still are important and you still have value. And so that’s the important thing for me on my instagram is for people to just really feel like they walk away lifted and feeling important and special, regardless of you know where they came from or where they’re headed.

Bill Gasiamis 1:04:50
How many people do we stand next to in the shopping, right at shopping or wherever we are and we. We have just assumed that everything is going fine for them. We don’t really look into it too much, and, yeah, there’s probably, you know, hundreds of things going on for people that we have got no idea about now, we just assume that their response is their attitude or is their personality rather than what happened to them that day or what’s happened to your entire waist.

Emily Stewart 1:05:25
And I tried, I tried, like, growing when our kids were growing up, like they’d come home be like, Jimmy was mean to me on the playground. And I was like “Well, you don’t know what’s going on in Jimmy’s life.” Like, What if his parents are getting divorced, or his sister’s sick or, you know, like, we played these kind of, like, fictitious roles, you know, role, yeah. And I was like, you don’t know what’s going on in somebody’s life. Just because you think you know, just because you think you see what you see, you actually have no idea.

Emily Stewart 1:05:50
And it’s with stroke, it’s really interesting, because those hidden deficits are the hardest thing. I think one of the hardest things for me is that, like, people look at you and go “Well, you’re pretty much back to normal, aren’t you?” And I’m like “I’m pretty much back to figuring out what my new normal is, you know.” But no, I’m not what is back to normal, you know, that’s not a thing, and they just don’t, they don’t understand that.

Emotional and Mental Challenges

Bill Gasiamis 1:06:17
But yeah, we’re going to have all the links to your Instagram for people who want to reach out, connect, follow you. Great to do that in the show notes. I really appreciate you soldiering on through your difficult day yesterday, the day before, and making it to the podcast. I really appreciate the chat and thank you for doing the work that you do, the way that you go about things I love, that you’ve been able to kind of turn your adversity into this thing where it supports and helps others. I wish you well in your recovery, because there’s plenty more to come.

Emily Stewart 1:06:55
Yeah. Thank you. I appreciate it.

Bill Gasiamis 1:06:58
That’s the end of another episode of the Recovery After Stroke Podcast, some conversations stay with you. This was one of them. Emily’s courage isn’t loud, it’s steady. It’s in the way she’s talks about fatigue, about rebuilding, about the way life shifts after a stroke, and how identity keeps evolving long after rehab ends. If this episode hit home for you. Let it be a reminder. You’re allowed to have off days, you’re allowed to cry, to rest, to stomp your foot and will it back into life. That’s part of healing, too.

Bill Gasiamis 1:07:31
If you want more, you’ll find support, perspective and hard, worn wisdom. In my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, it’s at recoveryafterstroke.com/book, or just search by name Bill Gasiamis on Amazon. Thanks for showing up for this podcast, and for yourself, we’ll see you in the next one.

Intro 1:07:54
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