Life Without Limits Podcast, Episode 9: Owning Your Health Story

Life Without Limits Podcast, Episode 9: Owning Your Health Story

No matter where you are on your health journey, wins and challenges add up and form pieces of your health story.

Some people find it difficult to acknowledge their health story, especially if it’s been confusing, hard to control, life altering, or some combination of the three.

Brene Brown, a clinical social worker, researcher, and bestselling author once said, “When we deny our story, it defines us. When we own our story, we can write a brave new ending.”

One person who has put Brown’s theory into practice is Katherine Wolf, a stroke survivor, advocate, and “hope expert.”

Wolf was pursuing a career in the entertainment industry, gave birth to a son in 2007, and six months later, suffered a massive brain stem stroke at the age of 26. She relearned how to walk, eat, and talk, and she’s been in ongoing recovery, which is the place where she’s learned that both suffering and joy can coexist.

She took ownership of her health story, and leveraged it to heal. She had her second child, and with her husband, launched Hope Heals, a community for families who are differently abled.

Listen to this episode of the Life Without Limits podcast where Wolf explains how acknowledging her health story—and her wide range of emotions—helped her reimagine her limits.

“I believe so deeply that the good story and the hard story can be the same story. They’re not mutually exclusive, and they do beautifully coexist,” she says. “No one’s life is without both good things and hard things that are happening at the very same time.”



You can follow Katherine Wolf on Instagram and on Facebook.

Transcript

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Host: This is Life Without Limits, the One Drop podcast that gives you the tools, inspiration, and support to challenge your limits. We talk with experts across all areas of health to open up more possibilities for you. Lean on us as you step outside your comfort zone to work your way toward better overall health and a life without limits.

Kim Constantinesco: Welcome back to the Life Without Limits podcast, where we aim to help you reach your health goals. I’m your host, Kim Constantinesco, and on today’s show, we have Katherine Wolf, who is a stroke survivor, an advocate, and an expert on hope. Katherine was pursuing a career in the entertainment industry, gave birth to a son in 2007, and six months later suffered a massive brainstem stroke at the age of 26 and nearly died.

She’s been in ongoing recovery, which is the place where she’s learned that suffering and joy can coexist. She’s the cofounder of Hope Heals with her husband, Jay, where they advocate for people who are differently abled and provide them and their families with resources for navigating this world. Katherine, thank you so much for joining us today.

Katherine Wolf: Thank you. I’m so glad to be here.

Kim Constantinesco: So I gave a very short intro to your story. Can you provide a little more detail into your experience having a stroke at the age of 26 and needing to relearn how to swallow, talk, and walk?

Katherine Wolf: Yes. Absolutely. As a 26-year-old new mom, I did have the rupture of an AVM, which is an arteriovenous malformation, which is a collection of blood vessels that can form before you’re born when you are in your mother’s womb. And mine did and then grew and grew and grew in my brainstem and then ruptured as a 26-year-old. So it’s kind of similar but much more rare but akin to a brain aneurysm is what I have.

And when it ruptured, it caused the massive brainstem stroke, and in order to keep me alive, the surgeon operated for 16 hours of micro brain surgery. And he was able to sustain my life, but in that surgery, he had to make decisions to sacrifice different parts of my body in order to allow me to live. So I am severely differently abled today. I am in a wheelchair, and I have no fine motor coordination in one hand. My face is partially paralyzed, and I’m deaf in one ear and blind in one eye. And even after many years of intense swallow therapy, still have trouble swallowing food.

And basically, after the stroke, I had to relearn absolutely everything: how to eat, speak, walk, everything. And now most of them are fairly intact again, although nothing is the same as it was post-stroke. I can do most things now, although I cannot drive a car or walk on my own. But by and large, I live a fairly normal life, even though some things are pretty different.

Kim Constantinesco: Well, and those are some huge physical changes that you went through, and I’m sure it impacted how you view this world. And I want to talk a little bit about how your mindset shifted after the stroke and how you embraced this concept of duality, you know, that suffering and joy can coexist in the same mind space.

Katherine Wolf: Right. Absolutely. So post-stroke, my world, obviously, has been turned entirely upside down. There were definitely glimpses of hope throughout the just nightmarish journey of those first two years post-stroke where I was in this intensive rehab hospital and having surgeries. I’ve had 12 total surgeries and had to relearn basic functions.

For instance, a highlight throughout that very dark time was my son, who would be, you know, six months old when I had the stroke and then two and a half when I was able to move back into our home. So James, my son, was definitely a glimmer of hope. And I think I began to see that even though my body was so broken and messed up and everything was so hard, that there is joy in the world. That sweet baby is full of joy, and even though my body was messed up, he just knew me as mom and was a joyful little baby.

I think I began to see that most of those truths coexist. I believe so deeply that the good story and the hard story can be the same story, and they’re not mutually exclusive and that they do beautifully coexist. And I see that so much in my own life and in the life of everyone I know, that no one’s life is without both good things and hard things that are happening at the very same time.

Kim Constantinesco: That is so incredibly profound and beautiful and authentic, I think, and, you know, I’m curious. What you just said – you mentioned that your body felt broken at the time. I’m curious. What was life like before you had the stroke, and also, does your body still feel broken to you today?

Katherine Wolf: The second part of that is no. Now my body feels great. I mean, I have plenty of problems for sure, things that do not work, but no, no, I would not remotely say broken. I mean, I have significant challenges for sure. And anyone who’s pretending they don’t who spends their days in a wheelchair is deceiving themselves because we all have challenges. Some are more significant than others on the outside for sure, but we all have stuff. But I think we all must hope while we cope with the reality. Don’t deny what is going on, but live with deep hope in all of our stories, and I see that so clearly in mine. And what did you ask about before?

Kim Constantinesco: So before having the stroke, what was life like for you?

Katherine Wolf: Oh, life was easy. I had no health problems whatsoever, no medical history, no family history, no indication that anything like this could possibly happen. I had married my college sweetheart, and he was in law school at Pepperdine University. And we were just, yes, living our dreams in Malibu, California, and life was easy and great, and I had this sweet, little baby. And then everything got turned upside down with brain rehab and just a new deal.

Kim Constantinesco: Let’s talk a little bit about more about brain rehab. You know, there are so many people who are part of the One Drop community who are setting small, manageable goals to get to where they’d like to be with their health right now. Can you talk about your experience with brain rehab and how aiming for progress, no matter how small it is, over perfection has helped you throughout your life?

Katherine Wolf: Oh, tremendously. Most definitely progress should be celebrated, even if it’s not perfection, because it’s never going to be perfect. Nothing will ever be perfect. I do believe that progress is all we’ve got, and my initial progress post-stroke was tiny. I mean tiny, tiny, tiny.

I can remember we celebrated when I could hold my head up for three minutes. When I was relearning to eat food, I remember celebrating when I could swallow pudding for the first time. I couldn’t eat solid foods. I could swallow a spoonful of pudding, and that was worth celebrating. I remember we went to Trader Joe’s afterwards and bought pudding and yogurt and celebrated that I could eat several spoonfuls. And, you know, tiny, tiny, little moments must be celebrated in the progression of any recovery, I believe.

Kim Constantinesco: Is it ever difficult for you to notice those tiny moments of progress or those small wins? And if so, give us an example.

Katherine Wolf: Not as much anymore. Now, after 13 years of living in this body and this life, no. But early on, absolutely. Early on, there was so much frustration—oh, my gosh—of how things used to be so easy and how difficult they were. And I can remember just some really moments of just sadness and almost anger when my body wouldn’t work in PT like I wanted it to. I wanted to just walk across the room, and there’s nothing more anger making than wanting to be able to do something and your body won’t cooperate. And first year there were many, many moments of deep frustration.

And one of the saddest that happened time and time again is that they would periodically test me to see if my swallowing muscles had healed and I could eat food again, and I would continually fail the swallow test. And it was just so defeating to not be able to swallow for 11 months total, and I can remember just almost rage-like feelings when I couldn’t eat food yet again. And then after many months of work and therapy and prayer and, gosh, just so much – I mean, I did exercises, swallowing exercises, ever night for months and was just – and relentless that I was going to eat food again. And I did finally.

Kim Constantinesco: Well, and I want to go back to what you said a little bit earlier about, you know, perfection, it doesn’t exist. It’s all about progress. And I think we live in a world where we see everyone’s highlight reel on social media, right? And I think that lends to more people striving for perfection, especially with their health goals. So how have you learned to live with and even celebrate the so-called imperfections in life?

Katherine Wolf: Yes. Well, I mean, for all of us in all of our lives, you have to fake it until you make it to some degree. And that’s a very unpopular sentiment in our world because you want to live your true, authentic reality, but I think that right there includes the ability to fake it until you make it. No, I can’t stand up perfectly. It’s going to be wobbly, but I’m going to stand up anyway. And maybe I’m going to be a little wobbly, but I’m going to do it.

And I think there’s really something to that of not just backing away from things because it's not going to be perfect. No. You can do it. Just may not be just like it was the way you remember how you hoped it would be or should be or whatever, but I think that there’s a place for imperfection in all of our stories.

And I think that just like I have a wheelchair on the outside of my body, I think we all have internal wheelchairs. We all have so many disabilities happening inside of us, things that are holding us back, just so many haunting memories or just issues in our own heads and hearts, all kinds of mental illnesses and addictions and just a lot of hard, hard stuff in our stories that gives us our own wheelchair. And I see so clearly that we’re all so connected in different versions of that same story.

Kim Constantinesco: Well, as you’re talking about your story to me today, you just seem so confident in where you are with it, and I’m curious. Did you ever struggle owning your story, meaning was it ever hard for you to admit certain parts of your own experience to certain people or even to yourself?

Katherine Wolf: Yes. First and foremost myself. I just always thought, after this stroke, that I would be back up and walking, wearing high heels one day soon, you know? I thought, well, surely this will be, you know, like a broken leg, but it’ll recover, or there would be nothing permanent here. I wouldn’t be in a wheelchair or, you know – I think there was a sense of this can’t be my story. (Sounds like: What on earth?) And yet in the years post, there’s definitely been a deep acceptance of no, this is my story.

And I believe that all that we can do in our own stories is accept them and use them, that my story is what I’ve got. And, you know, we don’t have control over so much of what happens to us in life, but we definitely have control over how we respond to what happens to us. So I definitely am not wanting to stay in the phase of just, you know, being completely disillusioned to what’s happening but instead kind of wake up and say, “This is what it is, and this is my life. And I am going to accept it and walk confidently – roll confidently in it.”

Kim Constantinesco: Very well said. And for those people who are maybe struggling to own their stories right now, what would you tell them in terms of what the power is in owning your story?

Katherine Wolf: Yes. Well, first, the reality that everybody has a story, you know? It’s not unique to a few of us who are hurt or have an illness. I mean, everybody has stories. Everybody has hard stuff they’re coping with. I’m constantly teaching my 13-year-old son that, that, you know, you may have this issue, but everybody’s got something. It’s not unique to have a hardship. Everybody does. Nobody is immune from hardship. That just makes you feel so much less alone, I think, and that changes how you feel about your story, I think.

Also, I think that if a person is living, then it’s on purpose. That I think if you have a pulse, you have a purpose for sure, that it’s no accident that you’re on Earth, no matter how messed up your body feels. That might as well wake up to my body’s messed up, I’m sick, I’m this, I’m that, but I’m here. I’m alive, and there’s a reason for that.

Kim Constantinesco: And you’ve talked a lot about, kind of, your own perspective on what happens and, you know, focusing on progress over perfection. But I know there were many moments in your recovery where you really had to help and ask for help and lean on your community. And I’m – you know, I want to know did you ever struggle asking for help from loved ones or from your community?

Katherine Wolf: Oh, for sure. I still do. I still, even all these years later, just hate the fact that my husband has to drive me everywhere I go. Or I have to a friend pick me up, and, you know, I can’t take my kids to school. I can’t drive anywhere I want to go, and that’s very painful, even now. And it is – it was difficult early on. Things were so bad very early on that there was no guilt in me asking for help because I couldn’t even lift my head off my chest. So, I mean, I needed help to do absolutely everything.

In time, I think it’s a journey, but the reality is that that’s what we’re there for, you know? In other people’s lives, I get to be a community that comes around them, and maybe I can’t physically help them too much. Maybe I can encourage them with my words and fill them with hope. We all have something to offer each other, and I think that’s how we were made.

Kim Constantinesco: Well, and you’ve really put that into action. You created this wonderful community of your own called Hope Heals. Can you tell us a little bit more about that?

Katherine Wolf: Absolutely. Hope Heals is our faith-based nonprofit where my husband and I speak, and we’ve written two books. We just encourage many, many people who hear us speak or who read what we’ve written that suffering is not the end of the story, that suffering is, in fact, the beginning of a new story. And we recently four years ago launched a summer camp that we founded called Hope Heals Camp, where we bring 100 families where disability is in the story and offer them a vacation-like week camp experience where they can just enjoy family time and just be in the community of people who are also coping with the reality of disability and still finding joy and hope in that.

Kim Constantinesco: Wow. That’s incredible. And it sounds like, you know, giving people the opportunity to take a breath, take a few steps away from their everyday life and putting them with other likeminded people really benefits their overall health and wellbeing.

Katherine Wolf: Absolutely. Yes. For sure.

Kim Constantinesco: So, Katherine, my last question for you is – like I mentioned before, we have so many people in the One Drop community who are working toward their health goals. Maybe they’ve just received a new diagnosis, or they’ve been living with a health condition for many years, and they’re wanting to improve their overall health. What advice would you give to them as they’re approaching their goals?

Katherine Wolf: Yes. I love goal setting. I’m a huge goal person, but I think goals can be very painful if they are not perfectly met and exceeded. So I tend to say that we should all hold our goals very lightly, that even if we do not get a goal we’re getting to, enjoy the ride getting there. It’s definitely better off than you were yesterday, and inching towards a goal can be just as great as meeting a goal, that it doesn’t have to be perfection, again, to be progress. And I think that’s so important in our world is to see that doing anything is better than doing nothing. And keep working and keep striving definitely, but don’t become discontent with where you are. And I think that’s been a huge part of my story is not trying to rush things in my story.

You know, a huge goal, I guess you’d say, after the stroke was to have a second child. I had really always wanted to have a sibling for James. And I wanted it to be biological, but I was open to adoption. But my doctor seven and a half years after the stroke did sign off on me becoming pregnant and having a second child, John, who’s now five years old. And that took seven and a half years, so goals don’t necessarily happen overnight either.

Kim Constantinesco: Well said. Very well said. And you’ve been such a source of hope in the short time that we’ve had together today. You know, I really appreciate you coming on, Katherine, and sharing a part of your experience with the One Drop community.

Katherine Wolf: Thank you so much for having me.

Kim Constantinesco: Thanks for listening to another episode of the Life Without Limits podcast. If you liked this episode, share it with someone you care about. We’re in this together.

{Music}

Host: Thank you for listening to Life Without Limits. If you liked this episode, tell a friend. We’re here to help you take back your time, power, and life so you can live to your fullest potential.

THE END

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Kim Constantinesco
Jun 02, 2021

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