Last December, Viive Founder & CEO Mallory McGrath was just going about her regular life—until suddenly, she couldn’t. Seemingly out of nowhere, at age 39, she landed in the hospital with intense head pain and stroke-like symptoms. After lots of tests, medical staff determined that Mallory had actually suffered an incredibly rare kind of migraine. Since then, she’s been slowly getting back to normal, doing physio and rehab for what is technically considered a type of brain injury.
What’s it like to come face-to-face with a potentially life-changing illness—especially as someone who’s made a career out of helping families plan for emergencies just like this one? A couple months into her recovery, Mallory sat down with Viive’s Content Manager, Katie, to talk about it. This conversation has been condensed and edited for length and clarity.
Katie: So, what actually happened?
Mallory: I’d been having some pain in the base of the right side of my skull. It was wrapping up the back of my head and down through my face, all the way into a tooth that I’d had a root canal in about eighteen months before. I’d gone to see my dentist and the endodontist who’d done the root canal, and they were assuming that the cause of the pain was something in my tooth. Root canals can sometimes get infected, and so they’d put me on antibiotics, and I had an appointment booked with an oral surgeon to see about just getting the tooth removed.
Toward the end of November, the pain was getting a lot worse. As a person who has chronic pain, I deal with pain every single day, but I had never experienced anything like this before. It was becoming unbearable. It was so bad that I bumped up my appointment with the surgeon, who did a bunch of tests… and told me that the tooth was perfectly healthy. That was really scary, because it meant that the next leading theory was that there was something wrong with the trigeminal nerve in my face. So I went to bed extremely upset that night, which was actually my birthday.
Katie: Happy birthday! 😅
Mallory: Yay! 💀
I went to bed that night, but then woke up in incredible pain around 12:30am. I had already been feeling pain like this, but now there was also this immense pressure. I got up and was trying to stretch it out, and then I remember suddenly feeling like I was going to pass out. So I put myself down on the floor next to the bed, and was trying to call my husband to wake him up and help me. But he wasn’t responding, and slowly I realized that maybe I wasn’t actually making any sound—maybe I was just calling him inside my head.
Somehow I eventually managed to crawl up on the bed and wake up my husband. He propped me up in bed and was trying to calm me down, and then I realized that I suddenly couldn’t feel my arm and leg. Then I started losing my ability to talk, and my ability to swallow. Everything on one side of my body just started completely shutting down.
My husband called 911, and the ambulance came pretty fast. Pretty quickly, the paramedics identified that I was potentially having a stroke. They rushed me to the hospital, and before we were even over the threshold of the emergency department, there were nurses all over me, assessing me, jabbing me with needles, rushing me down the hall to get a CT scan. The CT found that I didn’t have a massive brain bleed, which was good news, but it was still possible that I was having a stroke. So now I’m in emerg, I still haven’t seen my family, and I still have no idea what’s happening.
At this point, my medical team told me they wanted to give me a drug called TNK (tenecteplase). It’s used to break up blood clots when people are having strokes. But there are some caveats. First, if I take TNK, there’s a possibility it will cause massive internal bleeding. So, it could save your life, or it could seriously injure you. Also, if they gave me TNK, I would need to be in the ICU with a catheter for at least the next 24 hours, with them checking my vitals every hour, meaning I basically would not sleep.
And finally, there’s a limited, four-hour window during which they can administer TNK after a potential stroke has begun. So I have to make this decision fast, without my family, all while I’m in an obscene amount of pain. I can kind of get individual words out, but I can’t speak in full sentences. So I’m laying there trying to decide, What the frick do I do? Taking this is really dangerous, but so is not taking it. What do I do? I’m 39, am I having a stroke?
I knew I had to make a decision, so eventually I was able to communicate to them that I wanted the TNK. By this point I was feeling incredibly emotional. For some reason, I had an even harder time trying to decide whether or not I wanted a catheter (laughing). At some point they had clearly determined that I was cognitively capable of making decisions, but my brain was just so tired. You’re also pumping with adrenaline, so you’re shaking a lot and you’re cold, and they’re trying to calm you down, but they also really need to move fast. And they legally cannot make this decision for you, so even though they’re there to try to comfort you, you still have to decide what to do on your own.
So in the end, they gave me the TNK and the catheter. My husband was with me briefly at one point, and then my mom came to stay with me.
Katie: This whole scenario is exactly the kind of thing that we try to help people plan ahead for at Viive. What was it like to be suddenly put in this position as an Aging & End of Life Planner yourself?
Mallory: (laughing) It was definitely interesting. They did ask me, at one point before I was taken up to the ICU, about medical interventions—”Have you spoken with your husband about what sort of medical interventions you’d want in case of emergency? Do you want CPR, do you want a feeding tube?” I told them yes, I wanted all medical interventions, and he asked again, “Are you sure your husband is aware of your preferences?” And my mom cut in and was like, “Oh, for sure they have had those conversations. If you knew what my daughter did for a living, you’d understand.”
It was very emotional in the moment, to be asked that question, because there was a very real possibility that I might need life-saving measures performed on me. There was a real possibility that my husband could be asked those questions. It’s one thing to talk the talk, as we do at Viive, but it’s another one entirely to actually be in that situation for real.
Katie: I was just going to say—we talk about these scenarios all the time, as hypotheticals. Like, “You could get hit by a bus tomorrow! Make sure you have a plan!”
Mallory: Yeah, or “Your body could mimic a stroke!” Maybe that needs to be my new line with clients, LOL.
Katie: Going through all of this, was there anything that was unexpected or that otherwise stood out to you?
Mallory: No, I personally never felt surprised. Well, from a Planning perspective, at least. From a Planning perspective, I felt very prepared, and my husband felt very prepared. We weren’t prepared for the emotions and the shock of it all, but considering everything, we did well in this situation. Was there trauma around this for us as a family? Yes, of course. We’re still processing things. But as a whole, we were prepared for something like this to happen, because we have so many conversations about health, and emergencies, and life and death. We’re comfortable with those topics. It doesn’t make it easy; it just means we’re able to adjust and pivot when things happen.
While I was on the neurological rehabilitation floor, I ended up chatting with a lot of patients and caregivers, and really saw how underprepared a lot of people were for the situation they were in. And I don’t mean unprepared for having a stroke—nobody sits around preparing themselves for something like that—but around things like, not knowing what their loved ones would want in terms of medical interventions. It was direct evidence right in front of me that people really aren’t talking about these things. In the end they all figured it out, but they also probably had a lot of trauma that they wouldn’t have otherwise—things like adult children having to make really stressful decisions for their parents, and sometimes maybe choosing options that their parents didn’t agree with. It was tough to watch that and see the fallout from that as well.
Katie: It’s like we say in a bunch of places on our website: having a Plan in place isn’t going to make these hard experiences go away, or even make them easier to deal with, but it does spare you from having to go through a lot of unnecessary, additional pain on top of that.
Mallory: Exactly. Things are still going to be challenging. Bad things are still gonna happen in life. But we can make it so that you can get through those bad times a little bit easier. And I think that’s what my family was able to do, just because we knew how to handle the situation. We’re still having our struggles, but we know how to communicate around the topic.
Katie: So, getting back to your experiences—you’re in the ICU, you’ve taken the TNK. What happened next?
Mallory: Right. So, within two hours of them giving me that drug, all of a sudden I could move my arm and leg, which wasn’t consistent with me having had a stroke. But I’m still stuck in the ICU, and they still have to figure out what the heck is going on. They basically immediately started me on rehabilitation with a physical therapist, a speech therapist, all of that. 24 hours later I was moved to the neuro-rehab unit and over the course of the next week I had one more CT scan, two MRIs, an ECG, and an EEG. They also did so much bloodwork. They cleared me of a stroke, of seizures, of nerve damage, of heart issues. They looked for a whole bunch of stuff, and all of it came back normal. Everyone was so confused about what was happening to me.
It turns out that I had had something called a hemiplegic migraine. It’s an incredibly rare type of migraine—only about 800,000 people in the world have this, which isn’t that many people when you think about the whole global population. Most migraines stop at a certain point, but with a hemiplegic migraine, it completes its entire “circuit” and paralyzes you. You know me, I’m an overachiever. If I’m gonna do this, I’m going all the way. (laughing)
Katie: And you’re still in recovery, right?
Mallory: Very much so. It’s considered a brain injury, similar to a severe concussion. I feel like I’ll know I’m “fully recovered” around the six- to nine-month mark. I’m back working part time. Right now, I’ll have three- or four-day stretches where I feel pretty good, and then I’ll have a three or four days where I just feel absolutely awful. My brain is not healed by any means, and I still have muscle issues on my right side.
I’m not diminishing the pain and impact of migraines at all, but most of the time, when people have a really bad migraine they’ll lose a couple of days. If I have a major hemiplegic migraine, I lose months of my life. Months. It will seriously impact my life. I will end up with paralysis and aphasia and end up back in neurological rehab working with occupational, physical and speech therapists like I’ve been doing for months now. I’ve been taking preventative meds to try to stop it from happening again. Unfortunately, this past week I’ve been having “mini” hemiplegic migraines, so my neurologist is upping my dose. I’m also being prescribed abortive medication that I can take if I start having a migraine.
I will likely have another massive hemiplegic migraine in my life. And unfortunately, when they happen, you have to go to the hospital, because it could be a stroke—you just don’t know. I’ll have to go through that whole experience again. I’ll have to put my body through that. That’s just really crappy.
Katie: Has this changed anything for you, in terms of how you think of your own Aging & End of Life Plan?
Mallory: I don’t think it’s changed anything in terms of my End of Life Plan. I do think it’s changing things in terms of my Aging Plan. It’s really important for me to make some big changes—yes, while I’m healing, but also in the long term. I’m supposed to keep my stress down (aren’t we all? LOL). It’s challenging. As I was leading up to turning 40, I was already trying to make changes in my life, and I was failing miserably. I was just trapped in that spinning cycle of being a busy, working mom, and you want to make changes in your life, but you just can’t.
I was in therapy the other day, and my therapist told me about a patient of hers who said, “You know, sometimes I wish I could just get in a car accident so that I could take a month off work. I would just make things so much easier.” And I just nodded and was like, “That makes so much sense.” And I heard myself agree with it, and I was like, Whoa. And then I kind of understood—sometimes your body forces a “car accident” so that you slow down. And maybe that’s what happened to me. I was trying to find a way to slow down, and I couldn’t, so my body forced a weeklong vacation in the hospital.
Now the question is, once you feel better, how are you going to keep things slowed down? Once my brain is back to normal and my body is capable of going at its normal speed, how do I make sure I choose the healthy route of not overdoing it? A woman’s 40s are considered one of the most important decades for her aging process. What I do in my 40s will really decide what my 50s, 60s, 70s will look like. So now I’m really taking that decade incredibly seriously, and doing the work to keep myself on the right track.
I kind of found an escape hatch—it was just a little aggressive. It worked, it’s just not the way I would suggest other people do it.
Katie: Yeah, there might be other options.
Mallory: There are probably WAY better ways. Maybe don’t choose mimicking a stroke. But if this is the route that your body takes, try to make good use of it. (laughing)
