A shift from the medical perspective of disability to a mother’s perspective [PODCAST]

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“In the months just prior to the infantile spasms, as Josephine’s mind had begun to develop and grow, so, finally, had my love for her. My lack of affection for her up until that point had troubled me, and it was with relief that I had realized I was beginning to look at her with adoration—that a random thought of her was accompanied by delight as often as sadness. I knew that my lack of acceptance had been at the root of my difficulty bonding with her, and I had felt that I was beginning to find peace with the person that she was, limitations included.

Looking back, I see that my reaction to her that night in the rocker—my denial of her personhood, my despair at the thought of being obligated to mother her—reveals that what I mistook for love and acceptance was actually something much more tenuous and conditional. I wasn’t truly beginning to love her, I was beginning to love who she might become. It was only her potential I valued, not her current self. The odyssey to fully embracing her, disabilities and all, was one I had yet to make.”

K. Jane Lee is a pediatrician and author of Catastrophic Rupture: A Memoir of Healing.

She shares her story and discusses her KevinMD article, “A shift from the medical perspective of disability to a mother’s perspective.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show we have Jane Lee. She is a pediatrician, and she’s the author of the book Catastrophic Rupture: A Memoir of Healing. Here’s an excerpt from that book on KevinMD. Jane, welcome to the show.

K. Jane Lee: Thank you. I’m so happy to be here.

Kevin Pho: So we’ll get into your excerpt and book in a little bit, but first off, can you share your story and journey to where you are today?

K. Jane Lee: Yes, thanks. So I was trained as a critical care pediatrician, worked in the ICU for many years, and I spent a lot of time working with families of children who had severe disabilities, and I felt like I knew what was going on with them. I felt like I knew how to help those families make decisions. And then I found myself in the unexpected situation of being a parent to a child with severe neurologic impairment, and I discovered that what I had learned from my experience was completely unhelpful and really not relevant to my situation as a parent.

And so I came through that experience. I learned a lot. It changed me as a human, as a physician, as a mother. And when I realized what I had been through and how I had been changed, I had to tell that story, and so I wrote a book about it.

Kevin Pho: So why don’t we go straight into that story? Tell me how difficult it was to go through that situation. How did it change you?

K. Jane Lee: It was tremendously difficult. I think when I finally realized, after my daughter’s birth, when I finally realized the situation and how severe her disability was, how severe her brain injury was, I really struggled. I really struggled to accept her, to love her, to see her as a person even. And when I was in that dark place of not being able to love my own child, I looked for words of wisdom, words of encouragement: How do I get through this? And I really couldn’t find any. All I could find were books that talked about, “Oh, what a blessing it is to have a child with special needs,” and how these children are wonderful gifts. And that’s not how I felt.

And so I had to muddle my way through, and I didn’t know how I was going to get through, but over time I did. I learned how to see my daughter differently. I learned how to see other children, other of my patients, differently, and eventually came to a place where I can experience joy with my relationship with her, and now we’re in a really good relationship.

And so I wanted to be able to tell my story, to not only tell other parents that it’s OK if you start out at a really tough place like that, where you feel like you can’t make a connection with your own child, there is still hope to end out with a really good relationship. And I wanted to tell other clinicians that if you’re starting out at a place like I was, where you’re looking at patients like this and you’re really only seeing the disabilities, you’re missing a big part of the story. You’re missing the person. And now that I can see the person that my child is and see the people that my patients are, I really want to get other clinicians to that place too, where they can look beyond, look with different eyes, and see something more.

Kevin Pho: Paint us a picture in the exam room of how you saw a patient differently because of what you went through with your daughter.

K. Jane Lee: Now, instead of practicing critical care, I’ve switched over to complex care. So I see patients with medical complexity across their spectrum, whether they’re in the ICU or well and just coming for a regular checkup. I see them across their life. And so now if I walk into an exam room and I see a patient who maybe isn’t making eye contact with me, is nonverbal, very possibly drooling, not able to move their body, control their body the way they want to, in the past I would have disregarded that that patient could have thoughts, emotions, wishes, and I would have primarily talked to the parent.

Now I see that there’s a lot more going on there, and it may be a matter of the patient has communication cues that I’m not able to pick up on, but the parent is. So I’m much more comfortable now asking the parent, “How does your child let you know what they’re thinking? How do they communicate with you?” And then I’m better able to make a connection with that patient than I was before, because now I recognize that that is a possibility.

Kevin Pho: You tell your story in your book Catastrophic Rupture: A Memoir of Healing. There’s an excerpt from that book on KevinMD titled “A shift from the medical perspective of disability to a mother’s perspective.” Could you share with my audience some of your main messages from the book?

K. Jane Lee: Yes. So one main message that I’ve touched on already is just that people with severe disabilities, primarily neurologic impairment, who communicate in a different way, in a nontraditional way, are much more complex and robust and multifaceted than many people give them credit for. And we as clinicians, whether you’re actually a clinician or an educator or just a neighbor, people who interact with people with disabilities, need to understand that there’s more to that person than their disability, which is just one small part of who they are, and that you really need to learn to look beyond that. So that’s one big message.

Another big message is that it’s hard to be a parent of a child with severe disabilities, and there’s a lot of distress, grief, and guilt that goes along with that, and that’s an OK part of the journey. It’s OK to be a parent and not be OK with that, to not be happy about your situation all the time. It doesn’t mean that you’re a bad person. It doesn’t mean you’re a bad parent. It just means that this is a normal human response to being in a situation where your child has a severe challenge, a severe disability, a severe struggle that they’re dealing with.

So I wanted to let other families, other parents, know that they’re not alone, they’re not the only person to feel that way, and that it’s OK. And then really help the people who are working with children and families to understand more about the people behind the disabilities.

Kevin Pho: You were a critical care pediatrician when you went through this experience, and a lot of parents who also have children with disabilities, they don’t have that medical background. What kind of advice can you share with them to help them get through this difficult time?

K. Jane Lee: I think that me having the medical background was maybe not such a good thing. So I think that a parent going into this without the medical background might have been better able to look at their child and see the whole child than I was. But I think one piece of advice is to show themselves some compassion. I think that as parents, it’s easy to feel like you have to be perfect at it, and as a physician too. As a physician and a parent, it’s easy to feel that if you’re not perfect at your job, then you’re failing.

And so one thing I would tell parents is to show yourself some love, show yourself some compassion. You’re doing the best you can. Just keep advocating for your child in the best way that you know how, keep loving them, and it might not work out the way you wanted it to work out, but you need to show yourself some grace.

Kevin Pho: You mentioned as you were going through this, you read some books which were perhaps less than helpful. What other resources or places did you turn to for support?

K. Jane Lee: Where I ended up finding great support was actually online, social media. So I was going through this before social media was really a thing, but I was able to find online forums, discussion forums for parents of children with disabilities, and that was so tremendously helpful, just to find a community where I felt I was understood, my experience was understood. I could turn to these other parents for advice about things; my regular moms of typical kids couldn’t give me that advice.

And then as social media really blossomed, those online forums transitioned into Facebook groups and such. And so I think that’s one area where I have found a lot of support, and a lot of my patients’ families, I think, find support there. There’s a Facebook group for everything, and so I think it’s easy to find a sense of community and a sense of connection there.

Kevin Pho: We’re talking to Jane Lee. She’s a pediatrician, and she wrote the book Catastrophic Rupture: A Memoir of Healing. Jane, now that you have some time to reflect on this experience, is there anything that you would have done differently?

K. Jane Lee: I think that while I would like to say that I could have made this shift in perspective earlier, I don’t know that it’s something I could have told myself to do. It’s something that I had to just experience and work through. I think that feeling that I had the voice to advocate for my child earlier than I did would have been great.

Early on, after I started to see her as a person and see that she had potential and had needs that I could influence, I still felt unsure about speaking up on her behalf. I felt like I was being selfish or self-centered. And I think now, recognizing that disability advocacy is worth promoting, worth talking about, I think that’s something that I would have liked to have started doing earlier.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

K. Jane Lee: Take-home messages are to really look beyond the disability. Accept that it is a part of someone and not their whole self. Accept that having a disability does not make them less worthy, does not make them less than, does not make them less worthy of treatment, of respect, of interaction. That’s the big one.

And to show some compassion and show some grace to parents of children with disabilities. They’re going through a lot. They’re having a tough time. Maybe they’re doing really well with it, but maybe they’re not. So just show some grace.

Kevin Pho: Jane, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.

K. Jane Lee: Thank you.

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