Stephanie Zahrbock suddenly lost all sensation and the ability to move or feel anything below her belly button in 2016 when a lesion was discovered on her spine. The former runner shares how her world changed and how solutions to her challenges can benefit everyone.
Stephanie Zahrbock suddenly lost all sensation and the ability to move or feel anything below her belly button in 2016 when a lesion was discovered on her spine. The former runner shares how her world changed and how solutions to her challenges can benefit everyone.
Hosts: Kari Haley, MD, and Steven Jackson, MD
Guest: Stephanie Zahrbock
HealthPartners website: Off the Charts podcast
Got an idea? Have thoughts to share? We want to hear from you. Email us at offthecharts@healthpartners.com.
Kari Haley:
He is a rehab doctor from Chicago.
Steven Jackson:
She's an emergency medicine doctor from the Twin Cities.
Kari Haley:
Together, we're examining the health equity emergency.
Steven Jackson:
Inviting voices for change without the cue cards.
Kari Haley:
I'm Dr. Kari Haley.
Steven Jackson:
I'm Dr. Steven Jackson.
Both, together:
And this is "Off the Charts."
Steven Jackson:
Welcome to the show. We are really excited to have Stephanie Zahrbock on with us. She happens to be actually one of my patients, one of my peeps, who is going to tell us a little bit about her story. Just excited to have you here and excited to know more about you. I think our listeners are going to be just really inspired and educated today.
Stephanie Zahrbock:
Well, first and foremost, thank you for inviting me to be here. Appreciate it. Appreciate the opportunity to tell you a little bit about myself and my story. As you noted, my name's Stephanie Zahrbock. My story started almost eight years ago. I was a full-time work person. I had a full-time job, I had a family, I had a lot going on as I managed my kids, teenagers, teenagers, their lives. And in early October of 2016, I started feeling unsteady on my feet. Did not make a lot of sense because I was a big time runner, I specialized in half marathons and was training for my 25th half-marathon at the time, but I found that when I got to the top of the stairs, I had to say, "Oh, I need to hold onto the banister." I was 46, 45 at the time, almost 46, and then my left foot started to drag, and so I had to keep telling my foot to pick up.
I was still running. I was doing a lot of running. In fact, I ran like 22 miles the weekend before everything kind of started sliding very quickly downhill. I had my foot drag and then my left pinky stopped working very well, it was hard to use the shift control on the computer, and I went to the new U.S. Bank Stadium. It was when it had opened. I got to go to a game with my folks and I was feeling a little unsteady. I thought, ooh, I am wearing heels or it is just really steep or maybe I had a beer too many, but I decided I would talk to a doctor about it because it just felt so odd. So I made an appointment and went in and didn't even have a primary care doctor. Found a primary care doctor with...
Steven Jackson:
Good job.
Stephanie Zahrbock:
With Park Nicollet. Totally great. I went in to see the doctor and he did a gait assessment and was like, "Hmm, I think we should have you get an MRI tonight." And I was like, "Oh, tonight? OK." So I go in for an MRI over at Methodist Hospital, which was under construction, and so the MRI was in the parking lot. I had to walk out to the MRI in the parking lot, had the MRI done, and as I was leaving, the tech said, "Oh wait, the doctor would like to talk to you." And I was like, "Oh, why?" I was completely no idea what was going on. And the doctor came on and had a horrible case of laryngitis so she could hardly talk, and she was trying really hard to get the words out and said, "We have indications that you possibly have multiple sclerosis." And I was like, "What? I don't even know what this is. What is MS? So I'd like you to do some follow-up." The follow-up consisted of ruling out absolutely everything else that it could be.
So after a series of spinal taps and then blood patches to repair the spinal tap leakage a couple times and progressive degradation in my ability to walk, on Halloween of that year, so just a month after I'd first had symptoms, it was determined that I had MS and that I started some infusions. Meanwhile, my walking continued to degrade and I went in for a gait assessment at PT and was deemed to be ready for a walker. And I was like, are you kidding me? I've been running for a half marathon. I skipped the half marathon once I got the diagnosis because I was spinning. I was in the best shape I could possibly be, and I ended up... I took the option of buying a cane. So I bought a cane, and then because it was October, early November of 2016, which we all remember, I went straight to city hall and voted because I didn't know where I was going to be in the... Things were changing so much.
Good thing I did because on the morning of November 6th, I believe, it's when daylight savings time changed, I was unable to bear weight on my legs and my ingenious husband, who's an engineer, was able to roll me out of the house on the office chair to the car and take me to the emergency room where I was admitted, and that was the last time I could bear weight was the day before. And I lost all sensation and ability to move anything from below my belly button due to a lesion on my spine around T6, T7. I know it doesn't sound like MS because nothing would happen that quickly with MS. So the thought is that it's more likely a more nefarious relative, possibly neuromyelitis optica, or NMO. But we can't prove that anymore because I started getting treatment that then changed my blood content so they can't test for it. So my neurologist and I now move forward with the assumption is... And everything has been stable since then, which is also kind of a mystery as well.
Steven Jackson:
First of all, you had me at 25 half-marathons. That means you've done about 24 more than I have, and I haven't done any, which is impressive. Honestly, how was the adjustment from being that active to now having a diagnosis that requires a change in your function and even the need for an assistive device?
Stephanie Zahrbock:
Oh, it was huge. And to say that the physical part was the biggest part is actually false. The mental and emotional journey was far more varied and difficult, I would say. And it continues because it's not like this is ever going away. There's no break from this. I'm like, I would love a break, I'd love just a 24-hour vacation, but nope, I will be a wheelchair user and a paraplegic for the rest of my life. And it was a huge change, a huge change in everything I could do physically, but very little change in things that I could do mentally or emotionally, and that is one of the struggles with using a assistive device such as a wheelchair is there are perceptions by the public that because you're a wheelchair user, then probably you have cognitive issues. I can't tell you how many times people address my husband instead of me.
Particularly in the airport, this seems to be a big problem. I've had to talk to the people assisting me onto the plane, "Talk to me, not my husband. I can tell you what I need," And they defer to someone else because the able-bodied person is assumed to be cognitively fit as well. It's very interesting.
Kari Haley:
That has to have been, yeah, like you said, a huge adjustment not only in the physical sense, but multiple other. I mean, I think also one question I would have, too, for you is, you didn't have a primary care doctor before this, so I'm assuming that you didn't have a lot of encounters with the health care system necessarily before your diagnosis, but now I'm sure you're having a lot more encounters with the health care system and trying to maybe talk a little bit about how that's been navigated because that's a huge leap and now like different medicines, different doctors, different things that you have to deal with and the terminologies and all of the things that you have to now deal with.
Stephanie Zahrbock:
Oh, absolutely. You nailed it right on the head there. I had OB-GYN and an endocrinologist because I had a hyperactive thyroid. Hypo or hyper, which one? I can't remember. My thyroid shut down years ago. Hypo. Thank you, Dr. Jackson. So I now have a whole suite. I have a paddock full of doctors, Dr. Jackson only being one of them. He does my physical medicine and rehabilitation work, and I see him twice a year. But I have neurologists, I have a urologist, I have specialists as needed. I still have endocrinologist, of course. My primary care doctor is my, I consider, my quarterback who then helps me figure out where else I need to go to. I see multiple PT for different things that happen as are typical to happen with someone with paraplegia. There's a number of other things that happen like since I can't bear weight. I have some osteoporosis. I have recently learned I have some lymphoedema because of, again, sitting all the time.
And I do stay super active. So I am one that, since I can't run those half marathons, I have a bike that I get out on quite a bit. I have a hand cycle that I use for daily exercise. I have a standing frame, which is a frame that helps me to stand and look at the world from that vantage point for an hour a day, but an hour day is not the same thing as walking around. So it's a huge fleet and I feel like I'm always adding and subtracting to and trying to keep them all straight on, yeah, who do I call now for what and where to next, and who do I need to talk to next if something else comes up?
Steven Jackson:
Now, I know you talk about some of the everyday life situations, getting on an airplane and people essentially ignoring you or just talking directly to your husband, not considering what your needs might be, or at least not hearing from you. From your perspective, how has that translated in the health care system? Because it sounds like you are heavily involved in the health care system, having numerous providers. What have you seen? Where are some gaps?
Stephanie Zahrbock:
Well, it's been interesting because I am one who does constantly scan for what I see or don't see. And to be quite honest, I typically think of it in terms of, I have the privilege of being cognitively unimpaired and very healthy despite my diagnosis, and I have privilege that I can use. English is my first language, I'm am a white person that can use my privilege in our society. That is all to say that I do a lot of things because I want to make sure that those who don't have these privileges can also benefit from it because it breaks my heart when I have to go through something that takes so much work and I think of those that don't have the privilege. I have the flexibility to be in that phone tree for 500 hours or to speak up and be heard, especially when I have to say, "Excuse me. Talk to me, not my husband." The ability just to say that is helpful.
In health care, there's a number of things that I see, and this is not unique to health care, it's that we have a system that is not accessible and it's benign neglect that really has made it that way. But it's things in health care like, I have talked many times with my OB-GYN about, "I can't stand on a scale. Is there another way you could weigh me?" And each time it was like, "Oh yeah, we should think about that." And I have brought it up so many times that I finally kind of was like, "Hey, I'm really serious about it. I'm not just saying it for fun." I do, in fact, with every office visit I make say, "Hey, do you have a role on scale?" I know I'm not the only one that needs a role on scale. And I often get the, "Oh yeah, we don't have room for that," Or, "Oh, I have to look into that." So I feel like I'm making a little bit of headway even with my endocrinologist. She's like, "Oh, we could figure out a place to put it." I'm like, "I'm so glad to hear that."
It's stuff like a scale, which is tough because I know that's a tool used to make diagnoses and figure out dosages for medication. I had a long fought, and very successfully fought battle, about having my mammogram done at the same place that I see my OB. They wanted me to go to a separate location where there could be someone to assist, and I'm like, I don't need assistance. My arms work great. I can hold the positions. But because I was a wheelchair user, like, "Nope. Our standard protocol." I had to go up several levels of management to say, "Hey, why does this have to be here? Look at my pictures. Are they wrong? No, they're great." I'm like, "Then?" And yet I still get stopped by the technician, "Oh wait, you're in a wheelchair. Sorry, you have to go elsewhere." I'm like, "Nope, look at my chart." It's stuff like that that, because we have a protocol in place, doesn't necessarily mean you can't look at the person in front of you and go, oh wait, that doesn't really apply to them. So does that cover some of the ideas you were thinking of?
Steven Jackson:
More than.
Kari Haley:
Yeah, unfortunately.
Steven Jackson:
So we have a health equity cabinet here at HealthPartners, and one of the things that we talk about is our equity framework. And what that is in brief is applying a framework that causes us to look at our policies and our practices. Our space is accessible, the treatment that we provide, does it help everybody or just a few and leave others out? And it just sounds like this is an opportunity for this equity framework to be applied not only in a different way, but in a more intentional way. Because honestly, you can't have health equity cabinets in place and other things in place and not recognize that there are some needs that need to be met. And in full disclosure, when you told me this story about not having a scale in a clinic or two, that's why I wanted to bring you on because I felt like that needed to be heard, not just between us, but between all of us that listen. I want to shift gears just a little bit and ask you, how are Minnesota winters?
Stephanie Zahrbock:
They're not good. I'm on a continual quest to find the perfect gloves that can manage to push my chair and not get super soggy and not wear out. So if anyone knows of these magical gloves, I am on the market for those. You know how that dang salt and grit gets on your shoes? You imagine it on wheels, and you can picture my mudroom at home as I wheel in and just the streaks of white that go across the floor. It's a pain. Getting my chair in and out of my car, which I do by breaking it down and hauling it over my lap, requires pretty precisely placed towels during the winter months to catch all the grime from the wheels, and not only the larger wheels, but the caster wheels on the frame, which just, if not cleaned up, just drip stuff all over the interior of a car, which you can imagine is not great. It's rough.
I have been very strategic in scoping out places to eat that have covered parking because it makes all the difference if I have to park not in the snow. And then I have to be very strategic. If there isn't covered parking. I cannot sweep all the snow off my car, so I have to be strategic about it. Am I with somebody? Can someone help me? Ask for help when needed. Just manage some of those things that no one thinks twice about otherwise, if you're not a wheelchair user, if you're able-bodied.
Kari Haley:
I do have one question, too. Just being a female wheelchair user, if there's anything that you've found that has been more difficult specifically because you're female?
Stephanie Zahrbock:
Well, I will say that as a female, I'm not the norm. The majority of wheelchair users are male and they skew into the twenties and thirties, and I'm in my fifties, so I'm not the norm. And so a lot of the solutions for or problem solving that's done around issues when being a wheelchair user skew toward male and younger. For example, they include things that include a lot of upper body strength, which I work out daily, but I do not have a ton of upper body strength. I probably never will. My muscles are bigger than they've ever been on my arms, but not to a point where I can haul myself into a big truck where you see videos of guys able to do that. I did attempt at one point to learn how to jump curbs, which, again, is definitely a younger person's game. It requires a lot more risk than I'm willing to take, which, again, skews to that younger male than the older female. So yeah, thanks. That's a great question.
Kari Haley:
I was really excited when you were going to come on the podcast because I feel like in the DEI space, we often focus a lot on a lot of other issues and not necessarily on wheelchair-bound people or people who have other disabilities, and how do we make our world more equitable in that framework? And I think it's really important that we talk about it because I don't think we talk about it and I think people get uncomfortable when we talk about it. So I think it's great, especially hearing... I love that you're advocating for people who maybe don't have the voice or the space to be able to such as yourself, but do you have any big... You kind of mentioned some of the things that you've noticed, but do you have any big thoughts on like, hey, if health care could do this one thing or these top two things, what would you think of for being how we can improve our care?
Stephanie Zahrbock:
Well, the overall thing to remember is if it's accessible for someone like me, then it's accessible for everyone. So if you can go down to that bottom lowest common denominator that if you have doors that can sense coming instead of me having to bulldoze them down or try to wrangle them open, if it's accessible for me, then it's going to be accessible for everyone. And that's the primary thing. If you can just think of the small things that you don't consider. Like, I go to a beautiful facility for my urology work and they laugh because they're like, we just built this beautiful facility and yet we forgot to put push buttons on the doors so that those that use mobility devices struggle to get or have someone has to open it for them. And it's just that oversight that happens again and again. And I understand where it comes from. Generations ago, if you had a physical mobility issue, you were just stuck away like no one saw you.
And I certainly still hear from the older community like, "Oh, it's so good to see you out in public," Because they're just not used to that. But that's also tough to hear as a woman in her 50s that it's nice to see me out and about when this is my world too. So it's an interesting question that you ask. I don't have anything specific that I can come up with just in general. Like I mentioned already, it's benign neglect that has kept things from being fully accessible, but when you think about it, it's also a community that anyone can join instantly. So you might be doing work for yourself at some point in life because it's not something that's exclusive. I never knew I would be part of this community, and there's quite a few benefits of being part of it, and I'm grateful for those, but I welcome others. Not happily, but I welcome because I feel like I'm kind of waiting for all my peeps to join me because that's where a large majority of us are headed, right? I just got here early.
Kari Haley:
I think that's a really, really good point. Really important.
Steven Jackson:
We often talk on this podcast about how, and sometimes in order to affect a community or affect the community that we're targeting, we need to hear from the community, and I want to offer a solution. Particularly in health care, if there's a new building being built or you're being considered, somebody from the communities that would benefit from that service, they need to be at the table giving recommendations and consultations, so to speak, and you don't have to disclose where you get your urologic care from, but it wouldn't shock me if somebody who's a member of a community of wheelchair users, as an example, for many reasons or many diagnoses, it would shock me if they were at the table saying, "Yeah, make sure you have push buttons." That sounds like it might've been an opportunity there.
And so I think in similar fashion, when we sit at big conference room tables and we talk about we should do this, this would really help this community, and nobody at the community is there saying, you're right or absolutely not... We need to hear from the most voices as possible so that we can provide the best care as possible since we're talking about actual health equity. That's my solution.
Stephanie Zahrbock:
I couldn't agree more, and I think that's true of anyone with an oppressed status, so not a privileged status, they should be at the table because it's because we don't have them at the table that we continue to move forward without considering them, and they're...
Steven Jackson:
Absolutely.
Stephanie Zahrbock:
Me, us are those that know it intimately, firsthand, so I think it's important to include us.
Steven Jackson:
From a personal standpoint, something I guess we didn't really, when you had this sudden change in your life, sudden change in function, how was the adjustment at home, particularly for your husband and your kids? How was that?
Stephanie Zahrbock:
Well, it was rough in that my kids were teenagers, so that was already part of the deal.
Steven Jackson:
That's tough.
Kari Haley:
That's tough no matter what,
Stephanie Zahrbock:
I'll say that they, in general... I was just talking to my son about this, about what it was like, and he was like, "Well, you just weren't here anymore." I was hospitalized for two months because they couldn't figure out what was going on because it was so sudden, and that included my rehab, in patient rehab. And my son was like, "Well, you just weren't here all of a sudden." I go, "But things were working." He goes, "No, they weren't working when you weren't here." And I was like, "Oh, well, I'm glad to know I did actually contribute a bit." It was tough. We made our way through it. It was really day by day because none of us knew what was going to happen, what was going to happen further on. I'm happy to say that we've reached a really nice plateau now. We all know the limitations of my physical abilities, and everyone has been fantastic in stepping up to help when they know I need it or when I ask for help.
Actually, my children and husband are really good about being very conscientious about saying, "Hey, do you need help?" Versus just offering it, which is definitely something that I appreciate people asking rather than just jumping in. Like someone yesterday was like, "Oh, I'll just push..." I'm like, "No, no, no. Please don't push me. If I was to push you around, you wouldn't appreciate that too." I'll make it up.
Steven Jackson:
Listen to that. If you hear that, underline it.
Kari Haley:
What have you found a positive about your experience, but also a positive that we can come away with of, let's do something, let's change something and what we can look forward to.
Stephanie Zahrbock:
I think a real positive for me has been, I've been able to really take a step back, which is kind of an ableist thing to say because I can't step. I've been able to take a pause and look forward a little better and say, what really is important? What am I working for? What do I want to put my energy towards? Which I think is what everyone can do is look at, I mean, am I just doing everything by rote because I've just been doing it all the time, and society pressures are just making me just grind, grind, grind? Both my kids, one's graduated and one is soon to graduate, have opted to take some time to do some things that are purely what things they want to figure out that they'll never do again in their life. My daughter is a wrangler on a dude ranch or on guest ranch in Wyoming, which she loves, which is a far cry from her poli-sci degree.
And my son, who will graduate next spring, is saying similarly, he'd like to go and do something that's nothing that I would've done. I went right into work. In fact, I finished college early and went straight into the grind, and I'm just so proud of them that they... That's what I see that they took away from this, that, OK, I don't have to just work, work, work, I need to think about what's important to me and do things like that. And I think that is something that we all should consider, not just do the things we think we have to do, but do some of the things we want to do, all the stuff that makes life worth living.
Kari Haley:
Well, yeah, that was exactly perfect.
Steven Jackson:
That was perfect. Well, heartfelt thank you to you for your time and just sharing your experience. I think we're all better for it. I was telling Dr. Haley here, we need to hear perspectives that we likely, well, let's just say definitely don't have because I just think that's how we grow, and I feel like I've grown a little bit today and we just appreciate your story.
Kari Haley:
Thank you so much for coming on the podcast and sharing your story, being vulnerable about it, and we really appreciate it, and I hope all our listeners really hear what you are saying because I think it's important.
Stephanie Zahrbock:
Well, thank you so much for having me. This has been great.
Steven Jackson:
"Off the Charts" is a production of HealthPartners and Park Nicollet.
Kari Haley:
It is recorded by Jimmy Bellamy, with creative by Peggy Arnson, Tina Long, Tim Myers and Jeff Jondahl.
Steven Jackson:
Production service is provided by Matriarch Digital Media.
Kari Haley:
Our theme music is by Ryan Ike.