Episode 18: The Power of Presence
Sometimes there’s nothing you can say or do to fix a situation, yet showing up makes all the difference. Today on the podcast the sisters unpack the power of presence as a healing force on both the personal and professional side of cancer.
SHOW NOTES
Sources and Further Reading:
A doctor moves from skeptic to believer about the power of presence
Definition and history of presence in the context of nursing
TRANSCRIPT
Kayla 0:09
You're listening to the My Sister’s Cancer podcast. I'm Kayla Crum, registered nurse and writer.
Ella 0:15
And I'm Ella Beckett, social worker and cancer survivor.
Kayla 0:20
We're sisters on a mission to care for the cancer community through the sharing of real life stories, a sprinkle of sass, and lots of support.
Ella 0:28
Join us in a new kind of pity party. It's a pity so many of us carry the heavy burden of cancer alone. So let's make it a party and carry it together.
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Ella 0:43
Welcome back to the My Sister's Cancer podcast. We're so glad that you're here. This is one of your co-hosts, Ella, here, as always with my sister Kayla. We just wanted to mention, for those of you who've been listening along with us for the past few months, first of all, thank you so much. We have really appreciated all of the support and encouragement that we've received in this endeavor. It's been awesome to hear from so many of you that you're enjoying the podcast and that you find our work meaningful and helpful. So thank you so much for that. We would love if you have a few minutes, wherever you get your podcasts, we would love if you could leave us a rating and or a review. This is a great way for us to help others who may be searching for a cancer-related podcast or a new podcast that they want to listen to, to kind of have a good idea of what listeners think of our podcast. And so we would just love if you have a few minutes, like I said, to just leave a review or a rating. We would just appreciate that so much. So today we're going to be discussing the power of presence. Kayla, I would love if you could start us off with a definition of what that means.
Kayla 2:04
Sure. I will just define it, I guess, for our purposes - the Kayla and Ella dictionary, if you will - so, presence. First of all, we mean your physical presence with someone who is suffering. So not, you know, words of encouragement, not acts of service, not material gifts, but truly just your body being in the same room as the other person who is going through a crisis. And sometimes the presence, I think, includes attentive listening or attentiveness, even in the silence. And sometimes I think presence can be side by side doing your own things like reading or whatever, but still being together in the room. I think that in today's world, especially with technology, right, everyone talks about how we all tend to be glued to our phones. I'm as guilty of that as the next person and struggle honestly to even sit and just do nothing for more than like two minutes. You know, I think that our phones and the Internet, as much as they're amazing tools that have transformed the world for the better, also have kind of rewired our brains to think that time just spent doing nothing is unproductive and our brains get restless and look for something to do. But I would argue that attentive presence is actually one of the best gifts you can give someone. This doesn't even just apply to people who are physically suffering, or just to those who are suffering. I think sometimes we all just need someone to be present and fully there with us emotionally and physically, whether or not we're going through an acute crisis. I think we all saw this firsthand during the COVID-19 pandemic. No amount of Zoom meetings can make up for that feeling of just having another human being in the room with you, whether or not you're actively getting something done or even having a conversation. I think a lot of us realized how lonely it is and how it really does something even to your body, to not be around other humans for an extended period of time. It's funny, but like for me, even having my dog in the same room as me, if I'm like working at home alone all day, is like so much more different for my emotion and vibe, for lack of a better word, than having no other living being around. I think that's why a lot of people do find solace in pets. It's like a presence of some other living being with us. Today, obviously, we're going to talk about presence and how it relates to cancer because it can be a bit of a mixed bag. I mean, a lot of times you are somewhat immune-compromised. So you can't just have, you know, big groups of people over. And I think sometimes people are uncomfortable visiting those going through cancer because they look different than they normally do, or people feel like they have to fill the silence or whatever. So we're going to kind of unpack the power of presence and really encourage people to lean into showing up and shutting up, as we've heard it said before. So do you want to discuss a little bit about what presence meant to you in the thick of it, as we say?
Ella 5:40
Yeah. I mean, I think one of the things that first comes to mind as you were talking is the difference of the first time versus the second time when I was sick. So the first time, I just think a lot more people physically showed up. And some of that was because - I guess I'm specifically speaking to when I was inpatient in the hospital. My first time with cancer, I had some of my treatment inpatient to start, and I had a lot of people in my life physically show up for me while I was in the hospital. And that meant a lot. The second time around, when I was inpatient for my stem cell transplant, I only had a list of - I believe it was five humans that could visit me. And those were like the people. And then anything outside of that, I couldn't even have visitors. So just two very different experiences. And I think, like you were saying, that isolation and loneliness piece of it, it was clear to me that, you know, when I had more people physically there, I think my spirits were higher. I think I felt more on top of things and a part of what was going on in all these other people's lives. But then it's like when you're alone in a hospital… and obviously I had my family visit me. They were mostly my five people, but apart from that, I just felt so out of touch and largely disconnected, and then like, just really craved the physical presence of other people in my life. And then once I got home from the hospital, I was on in-home isolation for 100 days. And the details are foggy on whether or not I could have visitors during that time. I really honestly don't remember. But it was a very long time before I was able to, like, be in people's presence that second time around. And I think that definitely showed, like - my mental health was a little bit rockier, I think, the second time around. And I think a big contributor in that is the lack of physical presence with other people.
Kayla 8:02
Yeah, I remember the first time you had cancer feeling pretty disconnected from your experience. I was still at college and like very busy finishing nursing school. And gradually I just realized, like, over that first month of your treatment that I just wanted to spend more time at home. And in my mind, I thought, like, if I spend more time at home with Ella, I'll get my old sister back; we’ll laugh and talk and play board games and watch movies. And somehow I thought I'd fit all of that into my homework life. But I was like, you know, maybe we can get back to a little bit of normalcy amid - amidst the treatment. And what I actually got was just like, being present with you. Like I had this goal of like, getting you back to enjoying life or something. But once I kind of realized like, that wasn't in the cards for the immediate future, for very good reason, like, I couldn't force it to be like it was before. So a lot of times, like, you would sit on this lounge chair, Mom and Dad have this like very comfy chaise lounger, and I'd be over on the couch doing my homework. And you would like read or paint or do nothing and we would just like, be in the same room together. And for me, at least, that was enough. This is helping me feel more connected and like a part of her journey. I mean, I'm still doing the homework I could have done in my apartment an hour away, but something about just showing up and being there, even though we didn't have all these like, magical, hilarious moments, really helped me feel more connected. And I hope it did something for you too. It's funny because I, like, thought I was going there to support you and really I think I felt more supported by that.
Ella 9:53
Yeah, I remember I really appreciated just sitting together and I mean, I think like you said, like, I think it helped you feel more connected and supported, which is really important too. I will say, like, there was a handful of people that I think really understood this in addition to you, Kayla, and just a few friends and like other people in our life that just showed up literally at our house once in a while. Sometimes would text first, not always, but just - people who are, like you were saying earlier, just comfortable with the silence, I think. That's a huge thing. Like there are so many people that just can't handle it, like even for a few minutes and are just always trying to fill the air with words. And I think something that cancer taught me is that like a lot of times there's just really not sufficient words for what you're experiencing. And so it can be harmful and hurtful when people try to fill the air all the time with words. Again, I think people have great intentions with the words that they say. I like to believe that. But there is something so powerful about just being able to be with people and like actually be there. You know, your - your attention is there, your mind is there. I just think I could feel that. Like, I could feel that you were physically, but also emotionally and mentally there for me during that time. So thank you.
Kayla 11:37
Oh, that's really sweet of you to say. Like I said, I think it was just as much for me as for you. You brought up an interesting point, which is just feeling the attentiveness. I think that this can relate to nursing care. You can tell whether or not your nurse is being present with you or is checking off a list of tasks, right, when they're caring for you. And I actually was taught about the concept of presence in nursing school. Probably something else they don't teach you in medical school. Not to be snarky, but nurses are taught, like, therapeutic communication and motivational interviewing and how to be present with patients, what some people might call, like, soft skills that I think are actually huge and important. Unfortunately, I think in modern medicine it's difficult to embody a sense of attentive presence with your patients. At least I found that in the inpatient space; I had a little more ability to be present in the outpatient space. But even then you're being timed for quality control and how many patients you can get through the office in a day. But in an ideal world, there are sacred moments with patients where you take the time as a nurse to really see them and be a good listener. I think a lot of times people feel very unheard in the medical space. And so even though as a nurse, like, I'm not in charge of your plan of care, I'm just, you know, often the deliverer of the plan of care. If I take the time to really hear your concerns, advocate for you to the doctor, but even just listen, whether you're telling me a story about your grandson for the fourth time or, you know, you're a teenager showing me the latest TikTok trend, like - the nurses that do those little interpersonal things I think really embody presence. And they often, I think, run behind and probably don't have the best quality control stats in today's world. And I think that's probably, like, a good thing. And I have interacted with doctors who do the same thing, you know, where they make you feel like you're the only person on their list today while they're in your room. I forget who this was, but there is a doctor who would come into the patient's room during rounds, take off his white coat and sit next to the patient's bed and like, throw the coat over the back of the chair. And he did that in every room. And the one hand, you could look at that as an act, you know, like he's purposefully doing it, but it's communicating to that patient like, oh, like, I'm here, I'm settling in to listen to you and give you all of my focus for the time that I'm in your room. And that spoke volumes to me, like that he would do that to communicate care to the patient in that way. So having only been on the receiving end of hospital care for like one weekend in my life, I'm curious, Ella - you've had so many experiences, both inpatient and outpatient, with nursing care in particular and chemo - hours upon hours of chemo. I'm just curious, like, your experience with presence or lack thereof of both nurses and doctors and kind of the hospital system in general?
Ella 15:11
Yeah. I feel like again, there's a lot of foggy details for these few years, but like… I wish I had very specific examples of the good and the bad, you know, of like nurses who were very present and made me feel heard and then like maybe some examples of how they were not as great. And I don't necessarily have like, specifics that come to mind, but… I mean, I can definitely remember like, how it made me feel, like… I kind of - once you're in the hospital for long enough, you definitely learn, like, which nurses you like the most. I mean, I think that's just kind of human nature is like, you can kind of figure out like, okay, you know, this person… yeah, really makes me feel heard and cares for me so well. And like this other person, you know, I'm sure they're a great person, but like, they just kind of rubbed me the wrong way. I had a few of those for sure. What you were saying earlier about not feeling heard, I mean, I do think I had, unfortunately, quite a few experiences where I caught things or I was suspicious of things in my body that I was told by doctors and nurses, et cetera, like, oh, it's probably fine. It's probably not that. Like, that's super rare. I mean, a few examples that come to mind is like, I was suspicious of a blood clot because I saw that my veins were a strange color and like showed up very clearly. And when I initially brought that up, I was kind of like brushed aside or dismissed or whatever. But sure enough, like there was a blood clot on my port and it had to be taken care of. I can remember another time they had put my IV in like my upper arm, which is super strange, but I think this was pretty early on when I was still receiving all my chemo through my veins because I wasn't able to have my port yet. And I just knew something about it like, felt wrong. Like it felt like it was in there, not correctly. And they started pushing the chemo regardless. And my arm just started, like, ballooning up, like it was like swelling because all of the fluid was just like, building up right there. Those are just a few, like, minor examples of times when I felt like a little bit dismissed and like I didn't have the full attention of the people who were caring for me. Again, I like to believe everybody's just doing their - the best that they can, and going off of previous knowledge. But then I definitely had the nurses that like, I just loved and that I especially connected with. And I think that presence piece of it is like, I could tell who was actually listening to me and caring about what I said and who was just kind of trying to get the information, fill it in on my chart and go on to the next patient. Like it's very clear to me, like, I think I'm - I can read people pretty easily and I can tell like, if someone genuinely cares and there were so many nurses that like, just took such great care of me. But then also like, just talked to me like I was a human being that they genuinely cared about. So that was really refreshing too.
Kayla 18:45
You just triggered this memory of this one nurse from the chemo ward who like, recommended this certain recipe from Trader Joe's or something. It was like a fajita dish or something. And just like those little human conversations were like, crucial, right, to just feeling seen as a human, like you were saying. I also think that an excellent nurse can make you feel seen while still being efficient. And that's a hard needle to thread, but I think it's possible. I'm not sure that I was cut out to thread that needle. I tried, but I tended to either fall behind or kind of have to go into robot mode. And I think that's what a lot of people are faced with just due to the sheer volume and like, poor staffing ratios. But I've definitely worked with people or observed your care of people that I just marvel at how they are very efficient and competent at their work, and yet the whole time they're just like present and attentive and yeah, really treating you like a human being instead of, you know, a task to be done. Like I said, we learned about presence in nursing school and there is a body of research that talks about, like, the healing powers, the physically healing powers of presence. So obviously we've been focusing mostly on, like, the socio-emotional aspect, but there's some research that shows increased energy and immunity, increased white blood cell count and ATP - which is like the energy powerhouse of our bodies - when people are present physically and even like, lay hands on people with touch. So something we talked about in nursing school… this was pre-COVID, mind you. But, was like, not wearing gloves 24/7. So like, there are instances where it's safe to touch a patient with your bare hands, even just like a hand on the shoulder, a hand on the forehead, the shoulder, you know, a brief squeeze of their hand without gloves on when it's safe, you know, when there's no fluids to worry about or anything like that. I think that's huge, especially for people that don't have a caregiver staying with them or don't have a lot of visitors. That skin to skin, I mean, that's what we do with mothers and babies, right? When they first come out of the womb, we know now that they call it kangaroo care or whatever, where you put the baby on the mama's chest and they will literally have better physical outcomes because of that. And I just don't think we ever outgrow that. So we'll link to a couple articles that kind of touch on this. It's one of those things where we can't quite prove the mind-body connection and there's a bit of mystery to it, but there's enough out there that gives us a good hunch that touch and presence actually do matter from a physical sense too. So thanks for listening along today. Like Ella mentioned at the top, we would love to reach more people who are looking for a young adult cancer podcast or really any cancer or cancer-adjacent topic. We try to be inclusive here. So if you could rate and review this podcast wherever you listen - Apple, Spotify, Stitcher - that would be great because that helps it get out to more people. Kind of bumps it to the tops of people's search feeds if there's more ratings and reviews. If you have any questions about how to do that, we'd be happy to help. You can DM us on Instagram or email us at hello@mysisterscancer.co. Next week our topic is “Have You Tried Essential Oils? And Other Unsolicited Advice.” So that will be a bit more of a humorous topic and we can't wait to see you then.