WEBVTT 00:00:00.000 --> 00:00:18.400 [MUSIC] 00:00:18.400 --> 00:00:25.360 Okay, so hi everyone and welcome to the TTRF's fifth Dealing with Desmoids 00:00:25.360 --> 00:00:32.480 webinar hosted by Ashley Williams. This webinar series aims to bring coping strategies to the 00:00:32.480 --> 00:00:39.280 Desmoy tumor patient community. Thank you for joining us this evening. So I'd like to introduce 00:00:39.280 --> 00:00:43.840 you all to our presenter who I believe you're probably very familiar with at this point. 00:00:43.840 --> 00:00:50.800 Ashley Williams is a licensed clinical social worker and trauma counselor from South Florida. 00:00:51.520 --> 00:00:58.320 In 2015, she was diagnosed with a Desmoid tumor in her left leg. And since then, she has become 00:00:58.320 --> 00:01:04.800 passionate about helping patients heal from the trauma of their diagnosis and treatment. 00:01:04.800 --> 00:01:12.240 Her focus is on those with Desmoid tumors, cancer, chronic illness, and other rare diseases. 00:01:12.240 --> 00:01:19.440 Having undergone multiple rounds of treatment herself, Ashley believes in a holistic mind and 00:01:19.440 --> 00:01:26.160 body approach to healing. She continues to help individuals from these communities work through 00:01:26.160 --> 00:01:34.720 their trauma in her counseling practice. So once again, welcome, Ashley. Thanks so much for joining 00:01:34.720 --> 00:01:42.080 us. And before we get started, I just have a few instructions for our attendees this evening. 00:01:42.960 --> 00:01:50.320 So we welcome questions in the Q&A. You'll see the Q&A icon at the bottom of your screen. 00:01:50.320 --> 00:01:56.800 So if you have a question for Ashley, please feel free to share it there and she will try to get to 00:01:56.800 --> 00:02:04.880 it at the end of her presentation. Also you'll see that you can use the chat function. It is open 00:02:04.880 --> 00:02:10.960 for the use of the community. So please feel free to post there if you have any comments, 00:02:11.520 --> 00:02:15.000 experiences that you wanna share with the community, 00:02:15.000 --> 00:02:16.640 feel free to share them there. 00:02:16.640 --> 00:02:20.100 That will be unmonitored by us, okay? 00:02:20.100 --> 00:02:24.660 So now I will hand things over to Ashley. 00:02:24.660 --> 00:02:26.060 - Thank you so much, Lynn. 00:02:26.060 --> 00:02:30.340 I'm very excited to be back to talk about a topic 00:02:30.340 --> 00:02:35.340 that is extremely important to the Des Moines experience 00:02:35.340 --> 00:02:38.820 of making meaning and how do we make meaning 00:02:38.820 --> 00:02:42.280 of this thing that we have been through 00:02:42.280 --> 00:02:44.980 that many of us have dealt with for years, 00:02:44.980 --> 00:02:47.480 that is really, really challenging. 00:02:47.480 --> 00:02:49.420 I will apologize in advance 00:02:49.420 --> 00:02:52.140 because I am recovering from being sick. 00:02:52.140 --> 00:02:54.180 And so if I have a little bit of foggy brain 00:02:54.180 --> 00:02:56.940 or I lose my place, just please bear with me. 00:02:56.940 --> 00:03:00.380 And my dog who always knows when I'm not feeling well 00:03:00.380 --> 00:03:04.340 and will never leave my side is standing right next to me. 00:03:04.340 --> 00:03:07.340 So he might make a cameo appearance 00:03:07.340 --> 00:03:09.660 in what we're talking about today. 00:03:09.660 --> 00:03:13.100 So if you see him, just give Beau a little wave. 00:03:13.100 --> 00:03:16.560 But today we're gonna be talking about making meaning, 00:03:16.560 --> 00:03:20.180 which is a, it's a really difficult topic. 00:03:20.180 --> 00:03:26.420 It is one that sometimes, you know, it sounds nice, 00:03:26.420 --> 00:03:29.860 but sometimes it doesn't necessarily feel good, 00:03:29.860 --> 00:03:32.400 especially when we have been going through 00:03:32.400 --> 00:03:35.480 so many challenges potentially associated 00:03:35.480 --> 00:03:39.760 with our diagnosis, especially when I was first diagnosed, 00:03:39.760 --> 00:03:43.480 I remember people trying to make meaning 00:03:43.480 --> 00:03:48.280 of the experience for me and telling me things like, 00:03:48.280 --> 00:03:50.440 well, think of all of the things that you'll learn 00:03:50.440 --> 00:03:52.600 or think of all of the people that you'll help. 00:03:52.600 --> 00:03:54.640 And especially at the beginning, 00:03:54.640 --> 00:03:58.680 hearing some of these comments, they made me cringe. 00:03:58.680 --> 00:04:02.520 Like, that's all well and good, that's great, 00:04:02.520 --> 00:04:07.360 but I would really rather not have to deal with this diagnosis. 00:04:07.360 --> 00:04:12.080 I would really rather not have to go through these challenges. 00:04:12.080 --> 00:04:14.520 And so when we talk about making meaning, 00:04:14.520 --> 00:04:19.000 we are not negating the fact 00:04:19.000 --> 00:04:21.480 that what we're going through is really hard. 00:04:21.480 --> 00:04:23.840 We're not approaching this topic 00:04:23.840 --> 00:04:26.800 from a toxic positivity standpoint 00:04:26.800 --> 00:04:29.000 that is saying you should only be grateful 00:04:29.000 --> 00:04:32.080 and you should only be thankful for the experience, 00:04:32.080 --> 00:04:35.140 but we are gonna be talking about it from that place 00:04:35.140 --> 00:04:40.140 of knowing that we have a challenging diagnosis 00:04:40.140 --> 00:04:45.740 and something that potentially causes a lot of struggle. 00:04:45.740 --> 00:04:49.020 How can we make meaning of what we've been through 00:04:49.020 --> 00:04:50.440 and what we're experiencing? 00:04:50.440 --> 00:04:55.400 Let's see. 00:04:55.400 --> 00:04:59.240 So Steven Joseph in his book, 00:04:59.240 --> 00:05:01.200 he has a book called "What Doesn't Kill Us" 00:05:01.200 --> 00:05:04.040 And it's about the concept of post-traumatic growth, 00:05:04.040 --> 00:05:08.440 which we've talked about a little bit in previous sessions 00:05:08.440 --> 00:05:11.520 on trauma resilience and post-traumatic growth. 00:05:11.520 --> 00:05:14.520 When it comes to making meaning of an experience 00:05:14.520 --> 00:05:16.720 like being diagnosed with a Desmoid 00:05:16.720 --> 00:05:19.640 and all of the treatment that comes along with it, 00:05:19.640 --> 00:05:23.080 he says seeking meaning following adversity 00:05:23.080 --> 00:05:26.240 might be a universal human characteristic. 00:05:26.240 --> 00:05:28.920 We all need to make meaning 00:05:28.920 --> 00:05:30.960 of the experience that we've had. 00:05:30.960 --> 00:05:37.820 But the meaning a person finds must be unique to that person and his and her situation. 00:05:37.820 --> 00:05:43.140 It is up to trauma survivors themselves to move toward new understandings. 00:05:43.140 --> 00:05:45.540 After all, it is their experience. 00:05:45.540 --> 00:05:51.180 And so today in our topic of making meaning, I'm really going to be presenting you with 00:05:51.180 --> 00:05:57.900 what does the research say about where meaning comes from in our lives and what we can do 00:05:57.900 --> 00:06:01.100 to find that meaning for ourselves. 00:06:01.100 --> 00:06:06.340 But I am not going to be making meaning of this experience for you. 00:06:06.340 --> 00:06:12.500 Because even though all of us as Desmoid patients or as caregivers may be experiencing something 00:06:12.500 --> 00:06:18.700 similar, the meaning that comes out of it will be different and unique for all of us. 00:06:18.700 --> 00:06:22.620 And so this is not an approach of telling you what you should think or what you should 00:06:22.620 --> 00:06:26.060 feel or how you should be grateful or anything like that. 00:06:26.060 --> 00:06:32.300 rather, what are some practical and maybe some tangible steps that we can take in order to make 00:06:32.300 --> 00:06:39.420 sense of what we've been through and in order to guide us into finding meaning in an experience 00:06:39.420 --> 00:06:45.020 that let's be honest feels a little meaningless sometimes. Sometimes I've asked myself, what is 00:06:45.020 --> 00:06:51.260 the point of this diagnosis? Why do I have to deal with this? Why did my life turn out this way? 00:06:51.260 --> 00:06:57.260 And I feel that's something that many of us probably have asked ourselves or have dealt with. 00:06:57.260 --> 00:07:01.980 And so we're coming at it from a stance of something that is uniquely yours, 00:07:01.980 --> 00:07:07.820 uniquely you, and the unique meaning of your particular diagnosis and journey. 00:07:07.820 --> 00:07:17.100 I've shared this before in a previous one of our sessions just talking about what is growth and 00:07:17.100 --> 00:07:20.460 and what is growth after experiencing trauma. 00:07:20.460 --> 00:07:23.460 And I'd like to revisit this shattered vase theory 00:07:23.460 --> 00:07:27.420 because I think it is so pertinent 00:07:27.420 --> 00:07:32.160 to what it means to make meaning of our experience. 00:07:32.160 --> 00:07:35.220 Now, the shattered vase theory is this. 00:07:35.220 --> 00:07:38.020 Say that I have a vase that's sitting on my mantelpiece 00:07:38.020 --> 00:07:40.140 or on my table and I am clumsy, 00:07:40.140 --> 00:07:43.960 so I knock into that table and the vase tumbles over 00:07:43.960 --> 00:07:45.600 and it shatters on the ground. 00:07:46.720 --> 00:07:49.600 When that face shatters, we have three different options 00:07:49.600 --> 00:07:53.200 really in front of us for how we're going to handle 00:07:53.200 --> 00:07:56.440 the trauma that has happened to this face. 00:07:56.440 --> 00:08:00.100 The first way that we might handle it is 00:08:00.100 --> 00:08:03.680 we realize this base is broken, it is beyond repair, 00:08:03.680 --> 00:08:07.120 there is no use for it anymore, there is no purpose, 00:08:07.120 --> 00:08:09.600 this is damaged and so I'm gonna get rid of it. 00:08:09.600 --> 00:08:13.300 There is no value in it anymore, it's lost its beauty 00:08:13.300 --> 00:08:16.240 and so I am going to sweep up the pieces of that base 00:08:16.240 --> 00:08:18.000 and I'm going to throw them away. 00:08:18.000 --> 00:08:21.080 The second thing that we might do, 00:08:21.080 --> 00:08:23.620 especially if the pieces of the vase 00:08:23.620 --> 00:08:26.040 maybe are a little bit bigger and it's not as shattered, 00:08:26.040 --> 00:08:29.280 we try to pick all of the pieces up 00:08:29.280 --> 00:08:30.760 and piece them back together. 00:08:30.760 --> 00:08:34.440 And we might use glue or tape or some other method 00:08:34.440 --> 00:08:38.720 to try to bring the vase back to its original form 00:08:38.720 --> 00:08:42.500 and present it as though it has never been through 00:08:42.500 --> 00:08:43.440 something hard. 00:08:43.440 --> 00:08:45.440 It's never been through that challenge. 00:08:45.440 --> 00:08:52.640 Now, if we do this, we may be able to create a shape that looks similar to how the vase 00:08:52.640 --> 00:08:57.920 was before it fell off of the table, but the reality is that vase becomes more fragile 00:08:57.920 --> 00:09:04.280 and it becomes more susceptible to damage because the reality is with the trauma that 00:09:04.280 --> 00:09:09.200 it experienced, its form is different. 00:09:09.200 --> 00:09:16.400 Now, these tend to be the two ways that we approach diagnosis. 00:09:16.400 --> 00:09:21.480 I know at least for me and many of the Des Moines clients that I have and that I work 00:09:21.480 --> 00:09:27.920 with on a regular basis, the approaches tend to fall along these two lines. 00:09:27.920 --> 00:09:32.520 I'll talk about my personal experience first because whenever I was first diagnosed with 00:09:32.520 --> 00:09:38.140 the Des Moines, my initial reaction was, "This isn't going to break me. 00:09:38.140 --> 00:09:42.620 This isn't going to change me my life can go back to being normal, I'm just going to 00:09:42.620 --> 00:09:46.460 go through this treatment and then I'm going to do whatever I can to put the pieces back 00:09:46.460 --> 00:09:51.180 together so that my life looks the same as it did before. 00:09:51.180 --> 00:09:58.220 Now in my attempt to do that I realized this isn't working because my life is forever changed 00:09:58.220 --> 00:09:59.920 by this experience. 00:09:59.920 --> 00:10:04.140 And so I cannot go back to who I was before. 00:10:04.140 --> 00:10:06.860 And you know what, I'm frustrated by that. 00:10:06.860 --> 00:10:11.300 And so what I'm going to do now is I realize these pieces are broken, they're damaged, 00:10:11.300 --> 00:10:15.220 and so I'm just going to sweep them up and I'm going to throw them away because what 00:10:15.220 --> 00:10:21.620 place do I have anymore as someone whose life looks like they're going to have to be dealing 00:10:21.620 --> 00:10:25.620 long term with this diagnosis. 00:10:25.620 --> 00:10:29.620 Now the third thing that we could do with this vase is we could look at all of the pieces 00:10:29.620 --> 00:10:35.340 that are on the floor and we could realize that those pieces, even though the vase is 00:10:35.340 --> 00:10:41.980 broken even though that vase has been through a trauma. Those pieces still have inherent value, 00:10:41.980 --> 00:10:48.540 inherent beauty, and worth, and we can pick those pieces up and we can create something new 00:10:48.540 --> 00:10:55.180 and something potentially even more beautiful. We might be able to take those pieces and fashion 00:10:55.180 --> 00:11:02.140 them into like a mosaic, or my favorite word picture is taking those pieces and fashioning 00:11:02.140 --> 00:11:09.820 them into like a disco ball. Something that takes those broken pieces and puts them together and 00:11:09.820 --> 00:11:16.220 reflects the beauty that is still inherently a part of those pieces. And so today in a little 00:11:16.220 --> 00:11:20.460 bit of what we're talking about, about making meaning of our experience, we're really going to 00:11:20.460 --> 00:11:26.380 be looking at how do I find the beauty and the value in the fact that I've been through something 00:11:26.380 --> 00:11:35.020 really, really hard that I've been dealt a hand that I didn't ask for. And that is long term, 00:11:35.020 --> 00:11:42.860 in many cases, for most of us. And so how can I make meaning out of these pieces that feel broken, 00:11:42.860 --> 00:11:46.940 and how can I put them together in a way that reflects and shows their beauty? 00:11:46.940 --> 00:11:56.220 So we're going to spend a little bit of time here, because what we learn about making meaning 00:11:56.220 --> 00:12:03.260 of our adversity and of our challenges is that there are four pillars, essentially, 00:12:03.260 --> 00:12:04.420 of meaning. 00:12:04.420 --> 00:12:10.940 There are four different areas that the research shows us brings meaning into our lives. 00:12:10.940 --> 00:12:16.300 And so I want to part here and talk about these four things for a good portion of our 00:12:16.300 --> 00:12:18.420 time today. 00:12:18.420 --> 00:12:21.980 The research tells us that a sense of belonging, 00:12:21.980 --> 00:12:26.120 having purpose in our lives, 00:12:26.120 --> 00:12:29.420 storytelling, making sense of our experience, 00:12:29.420 --> 00:12:31.380 and what they call transcendence, 00:12:31.380 --> 00:12:34.860 which is essentially my connection to something 00:12:34.860 --> 00:12:36.940 that is bigger than myself. 00:12:36.940 --> 00:12:39.580 These are four pillars of making meaning 00:12:39.580 --> 00:12:42.620 out of our experiences, out of our lives. 00:12:42.620 --> 00:12:46.740 And we have a choice to invest in one or more 00:12:46.740 --> 00:12:53.380 these pillars to help bring meaning to what we're specifically talking about today is to 00:12:53.380 --> 00:13:00.180 our experience with a Desmoid. Now these can be applied to meaning in life in general, 00:13:00.180 --> 00:13:06.340 but for us we're going to be honing in on making meaning of a diagnosis that feels like 00:13:06.340 --> 00:13:16.020 there is no meaning to it. The first thing that we learn is belonging. Now belonging is a very 00:13:16.020 --> 00:13:24.860 kind of vague word, and it holds a lot of depth to it. And so when we talk about belonging, 00:13:24.860 --> 00:13:30.460 I want to make sure that we understand the difference between what it is to belong and 00:13:30.460 --> 00:13:37.540 what it is to fit in. Because there are, there's a very big difference between these two concepts. 00:13:37.540 --> 00:13:44.060 And I'm always amazed at the fact that I can even walk into a class of kids and I can ask 00:13:44.060 --> 00:13:46.500 them the difference between belonging and fitting in. 00:13:46.500 --> 00:13:49.060 And it's just like we inherently know the difference 00:13:49.060 --> 00:13:51.020 between those things. 00:13:51.020 --> 00:13:54.660 But belonging is essentially where can I show up 00:13:54.660 --> 00:13:57.140 and be myself? 00:13:57.140 --> 00:14:00.500 And fitting in is where do I need to change 00:14:00.500 --> 00:14:02.860 in order to be accepted by other people? 00:14:02.860 --> 00:14:05.780 We're not talking about fitting in. 00:14:05.780 --> 00:14:09.500 So we're not talking about the idea of just passive 00:14:09.500 --> 00:14:12.260 acceptance and hoping that other people accept us 00:14:12.260 --> 00:14:13.780 for who we are. 00:14:13.780 --> 00:14:16.400 With belonging, we're talking about creating 00:14:16.400 --> 00:14:19.580 meaningful connections with individuals. 00:14:19.580 --> 00:14:22.240 And those connections with some might be deeper 00:14:22.240 --> 00:14:25.940 where we can go to individuals and talk about 00:14:25.940 --> 00:14:28.660 the things that we're experiencing very vulnerably. 00:14:28.660 --> 00:14:32.220 But in regards to making meaning of the things 00:14:32.220 --> 00:14:35.260 that we've been through, belonging really talks about 00:14:35.260 --> 00:14:37.700 connecting with people in a meaningful way, 00:14:37.700 --> 00:14:42.700 even if it is short, infrequent, but pleasant interactions. 00:14:42.700 --> 00:14:47.900 Now, the first thing here says reaching out to other people and I feel like this is such 00:14:47.900 --> 00:14:55.620 an important thing to mention because belonging sometimes feels like a passive process. 00:14:55.620 --> 00:15:01.620 Like I hope that other people accept me and therefore I will belong to something. 00:15:01.620 --> 00:15:05.140 But belonging is actually a very active step for us to take. 00:15:05.140 --> 00:15:07.440 It's a very active process. 00:15:07.440 --> 00:15:14.240 And especially for those of us with a diagnosis, I feel like I have heard this from many Des Moines 00:15:14.240 --> 00:15:17.040 patients, it may resonate with you. 00:15:17.040 --> 00:15:25.280 But our diagnosis has a tendency to be, and to feel very high maintenance sometimes. 00:15:25.280 --> 00:15:30.720 Lots of appointments, lots of treatments, lots of things to consider. 00:15:30.720 --> 00:15:36.520 And so especially when I was first diagnosed, I remember thinking like, I don't want to 00:15:36.520 --> 00:15:40.760 burden people at all with what I'm going through. 00:15:40.760 --> 00:15:42.880 I don't wanna burden people with my experience. 00:15:42.880 --> 00:15:44.440 I don't wanna ask for help. 00:15:44.440 --> 00:15:46.300 I don't wanna ask for accommodation. 00:15:46.300 --> 00:15:49.400 And ultimately by doing that, 00:15:49.400 --> 00:15:53.040 I made my experience far more challenging 00:15:53.040 --> 00:15:54.840 because I isolated myself 00:15:54.840 --> 00:15:57.720 from being able to receive help from others. 00:15:57.720 --> 00:15:59.680 And so when we talk about action 00:15:59.680 --> 00:16:02.800 in an active process of belonging somewhere, 00:16:02.800 --> 00:16:05.920 it is not only about reaching out to other people 00:16:05.920 --> 00:16:09.500 in order to give, but it is also about reaching out 00:16:09.500 --> 00:16:12.200 to other people in order to receive. 00:16:12.200 --> 00:16:13.680 In different times in our life, 00:16:13.680 --> 00:16:16.440 we'll call for different things that we might need. 00:16:16.440 --> 00:16:19.760 And so many of us might have the tendency 00:16:19.760 --> 00:16:22.460 to wanna give, give, give to other people 00:16:22.460 --> 00:16:27.460 because we feel like our diagnosis 00:16:27.460 --> 00:16:30.520 can be inconvenient sometimes, 00:16:30.520 --> 00:16:35.280 but belonging really is about also initiating 00:16:35.280 --> 00:16:40.480 reaching out to people for help, reaching out to people to receive from them as well. 00:16:40.480 --> 00:16:46.720 Now the next thing says frequent pleasant interactions and I will give an example of 00:16:46.720 --> 00:16:52.640 this. I apologize in advance if I cry about this because when I was originally diagnosed, I was 27. 00:16:52.640 --> 00:17:01.360 I had no contact with the healthcare system prior to this and immediately found out that 00:17:01.360 --> 00:17:04.980 that I had a Desmoid tumor and was sent to chemo, 00:17:04.980 --> 00:17:06.500 weekly chemo. 00:17:06.500 --> 00:17:11.000 And I remember being terrified and asking questions 00:17:11.000 --> 00:17:14.120 like why me and why is this happening to me? 00:17:14.120 --> 00:17:15.960 Having to put in time off of work 00:17:15.960 --> 00:17:17.500 and feeling like an inconvenience 00:17:17.500 --> 00:17:19.280 and feeling like a burden. 00:17:19.280 --> 00:17:23.340 And every week before I received my chemo infusion, 00:17:23.340 --> 00:17:26.660 I had to go to an office in order to get my blood drawn 00:17:26.660 --> 00:17:29.180 to see if I could have chemo that week. 00:17:29.180 --> 00:17:31.660 And every single week I had the same nurse, 00:17:31.660 --> 00:17:33.780 her name was Esmeralda. 00:17:33.780 --> 00:17:37.060 And Esmeralda, her and I probably had 00:17:37.060 --> 00:17:40.380 a three minute interaction every single week. 00:17:40.380 --> 00:17:43.120 Nothing substantial, just very, very small. 00:17:43.120 --> 00:17:45.900 But I will never forget Esmeralda 00:17:45.900 --> 00:17:49.060 because of her kindness towards me, 00:17:49.060 --> 00:17:51.300 because of her gentleness towards me, 00:17:51.300 --> 00:17:53.500 because of her honest concern 00:17:53.500 --> 00:17:56.580 about what was going on in my life, 00:17:56.580 --> 00:17:59.760 but also because she used to share things with me 00:17:59.760 --> 00:18:03.060 about her family and what she was doing during the weekend 00:18:03.060 --> 00:18:05.160 and who she was going to see 00:18:05.160 --> 00:18:07.460 and what their relationships were like. 00:18:07.460 --> 00:18:10.840 And so there was an element of frequent, 00:18:10.840 --> 00:18:14.460 pleasant interactions that also showed this third piece 00:18:14.460 --> 00:18:18.180 of mutual care, of being able to share vulnerability 00:18:18.180 --> 00:18:22.800 with each other, being able to give and both receive. 00:18:22.800 --> 00:18:25.360 And even though that first round of chemo, 00:18:25.360 --> 00:18:30.720 I would say it was probably the most difficult experience of my life because it was the first 00:18:30.720 --> 00:18:32.120 of its kind. 00:18:32.120 --> 00:18:38.640 I can look back and I can smile solely because of Esmerelda. 00:18:38.640 --> 00:18:47.200 My nurse is the one shining spot that I can look back on that gives me peace, that changed 00:18:47.200 --> 00:18:52.140 my experience of something that was really, really hard because I felt like I had something 00:18:52.140 --> 00:18:57.040 to look forward to, a meaningful connection with someone, someone that I could interact 00:18:57.040 --> 00:19:02.540 with on a regular basis, who understood to a degree of what I was going through and who 00:19:02.540 --> 00:19:05.500 cared about what I was going through. 00:19:05.500 --> 00:19:12.160 Now this idea of mutual care is really significant, especially for those of us who might be more 00:19:12.160 --> 00:19:15.500 of givers than receivers. 00:19:15.500 --> 00:19:19.420 And so I don't know if you've ever been in a position where you've had the opportunity 00:19:19.420 --> 00:19:25.740 to give back to somebody who you have received from in the past. But the opportunity to give 00:19:25.740 --> 00:19:31.580 back to some of my friends and some of my family who really stepped up to help me during the most 00:19:31.580 --> 00:19:39.020 difficult times of my life gives me such fulfillment. It gives me such a sense of purpose. It gives me 00:19:39.020 --> 00:19:45.420 such a sense of meaning, of being able to reciprocate that generosity, to reciprocate that 00:19:45.420 --> 00:19:49.180 care with the people who really showed up for me. 00:19:49.180 --> 00:19:51.580 And many of us have stories just like this, 00:19:51.580 --> 00:19:55.660 and that the belonging piece and the meaningful connection 00:19:55.660 --> 00:20:00.000 piece may be with those deep connections with family members 00:20:00.000 --> 00:20:00.820 and friends. 00:20:00.820 --> 00:20:03.160 But it may also be with our nurses, 00:20:03.160 --> 00:20:05.140 or it may also be with coworkers, 00:20:05.140 --> 00:20:06.980 or it may also be with that person 00:20:06.980 --> 00:20:09.380 that we see at the coffee shop every single morning 00:20:09.380 --> 00:20:12.220 that we have that small interaction with that 00:20:12.220 --> 00:20:17.340 help bring meaning and value into our relationships and into our lives. 00:20:17.340 --> 00:20:25.260 The second pillar of meaning is finding purpose. Now this is like a really big one and I know 00:20:25.260 --> 00:20:31.660 whenever we talk about finding purpose the tendency is for us to think like well my purpose has to be 00:20:31.660 --> 00:20:38.620 something very very big like solving world hunger or something like that and that's true. Purpose 00:20:38.620 --> 00:20:46.140 can be something that's very big, but it can also be something that is very specific to our sphere 00:20:46.140 --> 00:20:56.620 and to our connections. For example, here it says, "Purpose requires stable and far-reaching goals." 00:20:56.620 --> 00:21:01.740 Now, goals are really important, but these are not the goals of like, "I want to exercise every day," 00:21:01.740 --> 00:21:07.660 or "I want to eat healthy today," or "I want to get to work on time." These are long-term, 00:21:07.660 --> 00:21:14.300 far-reaching goals that organize the decisions that we make, that organize the direction that 00:21:14.300 --> 00:21:23.580 we take, that's kind of a forward-pointing arrow that directs our decisions. Now for me, I find 00:21:23.580 --> 00:21:32.380 purpose and the second item a contribution to the world through my education. Now being a 00:21:32.380 --> 00:21:40.900 a Desmoid patient myself and really dedicating a lot of my career to mental health and what 00:21:40.900 --> 00:21:47.960 it is to heal from experiencing trauma. I am very, very grateful for the opportunity 00:21:47.960 --> 00:21:54.220 to feel purpose and to bring meaning to my Desmoid experience by being able to share 00:21:54.220 --> 00:21:59.920 the things that I've learned and the things that I've experienced about how to heal from 00:21:59.920 --> 00:22:03.520 trauma because that's exactly what we've been through. 00:22:03.520 --> 00:22:06.640 But I'll say I find equal, if not more meaning, 00:22:06.640 --> 00:22:10.160 from interacting on a regular basis with my eight-year-old 00:22:10.160 --> 00:22:12.840 niece and being a part of her life 00:22:12.840 --> 00:22:15.160 and being a part of her growth and development 00:22:15.160 --> 00:22:18.240 and being in those everyday moments with her, 00:22:18.240 --> 00:22:22.440 seeing her play soccer, seeing her learn how to rollerblade, 00:22:22.440 --> 00:22:25.680 and just finding that purpose and being 00:22:25.680 --> 00:22:30.280 someone who is a stable, reliable presence in her life. 00:22:30.280 --> 00:22:36.040 I know many, many Desmoid patients who have done this 00:22:36.040 --> 00:22:41.720 piece of really trying to find purpose and fulfilling a purpose 00:22:41.720 --> 00:22:45.480 in order to give back in some way, not just to the world, but 00:22:45.480 --> 00:22:49.800 specifically to the Desmoid community. I know many of you who 00:22:49.800 --> 00:22:55.320 have held fundraisers or many of you who have connected via 00:22:55.320 --> 00:23:01.320 social media with individuals who are maybe recently diagnosed. 00:23:01.320 --> 00:23:05.360 Many people who have opened up platforms and opened themselves 00:23:05.360 --> 00:23:10.440 up to answer questions for individuals who are recently 00:23:10.440 --> 00:23:15.160 diagnosed. I know many Desmoid patients who have also given 00:23:15.160 --> 00:23:18.920 back on a larger sphere. Many of you might know my friend Dana, 00:23:18.920 --> 00:23:24.000 who is a Desmoid patient who had a Desmoid in her leg, has a 00:23:24.000 --> 00:23:27.320 the dentist point of her leg, who started a nonprofit 00:23:27.320 --> 00:23:31.440 organization to help individuals heal from trauma 00:23:31.440 --> 00:23:33.840 by hosting trauma informed retreats. 00:23:33.840 --> 00:23:38.680 Anything big and small that we can do to bring purpose 00:23:38.680 --> 00:23:40.860 and meaning to not only our lives, 00:23:40.860 --> 00:23:43.560 but to our experience with our diagnosis, 00:23:43.560 --> 00:23:45.780 whether it's desmoid related 00:23:45.780 --> 00:23:50.100 or whether it's not desmoid related is significant. 00:23:50.100 --> 00:23:53.440 Now, this third piece of knowing yourself 00:23:53.440 --> 00:23:55.320 that also feels like a little vague 00:23:55.320 --> 00:23:58.200 and a little existential, I know. 00:23:58.200 --> 00:24:00.580 But especially with receiving something 00:24:00.580 --> 00:24:02.160 like a Desmoid diagnosis, 00:24:02.160 --> 00:24:07.160 the reality is our relationship to our body tends to change. 00:24:07.160 --> 00:24:10.740 I know that there can be significant feelings 00:24:10.740 --> 00:24:13.380 of my body's betrayed me, 00:24:13.380 --> 00:24:15.880 or I don't know this body anymore. 00:24:15.880 --> 00:24:19.520 I don't know how to work and move this body anymore. 00:24:19.520 --> 00:24:22.480 And so knowing ourselves is not even necessarily 00:24:22.480 --> 00:24:25.100 just from an intellectual and an emotional side, 00:24:25.100 --> 00:24:27.020 but also from a physical side. 00:24:27.020 --> 00:24:31.040 The word introception here we've talked about before, 00:24:31.040 --> 00:24:33.280 but introception in my opinion 00:24:33.280 --> 00:24:36.340 is one of the most significant pieces 00:24:36.340 --> 00:24:38.340 of recovering from trauma, 00:24:38.340 --> 00:24:41.360 but also one a step in the direction 00:24:41.360 --> 00:24:43.760 of making meaning of our experience. 00:24:43.760 --> 00:24:45.480 And what introception is, 00:24:45.480 --> 00:24:49.760 is essentially becoming attuned to the cues 00:24:49.760 --> 00:24:51.700 that our body's giving us. 00:24:51.700 --> 00:24:54.300 Those body cues might be something as simple 00:24:54.300 --> 00:24:57.740 as knowing when I'm hungry and knowing when I'm thirsty, 00:24:57.740 --> 00:25:00.580 but we're really talking about it from a level as well 00:25:00.580 --> 00:25:02.660 of what am I feeling? 00:25:02.660 --> 00:25:05.740 What am I experiencing emotionally? 00:25:05.740 --> 00:25:08.020 Now, when we've been through a trauma, 00:25:08.020 --> 00:25:11.740 one of the most difficult things is for us to be able 00:25:11.740 --> 00:25:13.940 to identify our emotions. 00:25:13.940 --> 00:25:16.540 We've talked about how the nervous system kicks on 00:25:16.540 --> 00:25:18.580 and there's that disconnection between our brain 00:25:18.580 --> 00:25:20.460 and our body and when that happens, 00:25:20.460 --> 00:25:24.520 it facilitates this thing called alexithymia, 00:25:24.520 --> 00:25:27.760 which is essentially, I don't know what I'm feeling. 00:25:27.760 --> 00:25:30.220 Like you can ask me how I feel about something, 00:25:30.220 --> 00:25:32.220 but I could not tell you what emotion 00:25:32.220 --> 00:25:34.020 this is that I'm feeling. 00:25:34.020 --> 00:25:38.080 And even as a therapist who works on a daily basis 00:25:38.080 --> 00:25:40.220 with people and talking about their emotions, 00:25:40.220 --> 00:25:42.300 sometimes it's challenging for me 00:25:42.300 --> 00:25:44.580 to be able to identify my own emotions 00:25:44.580 --> 00:25:45.880 and what I'm feeling, 00:25:45.880 --> 00:25:48.280 because I've experienced trauma as well. 00:25:49.180 --> 00:25:50.780 One of my biggest encouragements, 00:25:50.780 --> 00:25:55.100 I think I've talked about this book before, 00:25:55.100 --> 00:25:57.220 but there's a book called "Atlas of the Heart" 00:25:57.220 --> 00:25:58.400 by Brene Brown. 00:25:58.400 --> 00:26:02.860 It is essentially an encyclopedia of emotions, 00:26:02.860 --> 00:26:05.420 but it puts them very simply, 00:26:05.420 --> 00:26:09.460 and each emotion probably is described in like a page or two. 00:26:09.460 --> 00:26:12.900 And so it's not a huge commitment to be able to read 00:26:12.900 --> 00:26:14.620 about the different emotions, 00:26:14.620 --> 00:26:17.540 but taking an opportunity to learn 00:26:17.540 --> 00:26:19.580 What are the different emotions that are out there? 00:26:19.580 --> 00:26:22.260 What might I have been feeling before? 00:26:22.260 --> 00:26:24.580 Is this something that I'm feeling now 00:26:24.580 --> 00:26:28.100 in trying to learn what our body is telling us 00:26:28.100 --> 00:26:30.940 and what we're feeling from an emotional standpoint? 00:26:30.940 --> 00:26:34.000 If we know ourselves, if we know what we're feeling, 00:26:34.000 --> 00:26:35.540 if we know what we're thinking, 00:26:35.540 --> 00:26:38.820 if we know what our body's trying to communicate to us, 00:26:38.820 --> 00:26:41.740 that is such a powerful informer 00:26:41.740 --> 00:26:46.740 of where we have the ability to find purpose in our lives. 00:26:46.820 --> 00:26:48.540 Many of us are gonna find purpose 00:26:48.540 --> 00:26:49.940 in very, very different ways. 00:26:49.940 --> 00:26:51.580 I've shared some examples. 00:26:51.580 --> 00:26:53.420 I didn't ask if I can share this example, 00:26:53.420 --> 00:26:54.820 so I'm gonna keep her anonymous. 00:26:54.820 --> 00:26:58.940 But I know a girl who has a Desmoid tumor 00:26:58.940 --> 00:27:01.940 who shares that one of the most distressing parts 00:27:01.940 --> 00:27:05.780 of the experience was losing her hair. 00:27:05.780 --> 00:27:08.300 And so losing her hair due to one of the treatments 00:27:08.300 --> 00:27:12.580 and has gone to school and has dedicated a lot of her life 00:27:12.580 --> 00:27:16.380 to working in a salon because based off of her experience, 00:27:16.380 --> 00:27:20.980 she feels such meaning and purpose giving back to people 00:27:20.980 --> 00:27:23.440 by making their hair just look beautiful 00:27:23.440 --> 00:27:26.520 and making them feel good about themselves. 00:27:26.520 --> 00:27:29.960 And so all of our experiences are unique to us, 00:27:29.960 --> 00:27:31.920 therefore the purpose that we find 00:27:31.920 --> 00:27:33.720 is gonna be unique to us as well. 00:27:33.720 --> 00:27:37.240 The third thing I've talked about quite a bit. 00:27:37.240 --> 00:27:39.240 And so I'm going to run through these 00:27:39.240 --> 00:27:41.140 because I've talked about them and other dealing 00:27:41.140 --> 00:27:43.600 with Des Moines sessions. 00:27:43.600 --> 00:27:48.080 but storytelling brings so much meaning into our lives. 00:27:48.080 --> 00:27:50.440 But today we're gonna look at it from the standpoint, 00:27:50.440 --> 00:27:54.140 not necessarily of sharing our story with other people, 00:27:54.140 --> 00:27:57.320 but looking at storytelling from the perspective of, 00:27:57.320 --> 00:28:01.960 what is the story I tell myself about myself? 00:28:01.960 --> 00:28:06.640 Because the reality is a trauma like receiving a diagnosis 00:28:06.640 --> 00:28:08.440 changes our life. 00:28:08.440 --> 00:28:10.360 It completely upsets our world. 00:28:10.360 --> 00:28:12.100 It upsets our view of who we are. 00:28:12.100 --> 00:28:13.700 It can upset our view of the world. 00:28:13.700 --> 00:28:17.260 It can upset our view of our higher power, 00:28:17.260 --> 00:28:20.200 of God, of other people in our lives. 00:28:20.200 --> 00:28:24.680 And so by telling stories and really digging into 00:28:24.680 --> 00:28:29.020 how have these things affected me and who am I now, 00:28:29.020 --> 00:28:31.780 it's a really, really powerful way to make meaning 00:28:31.780 --> 00:28:33.260 of the things that we've been through 00:28:33.260 --> 00:28:35.680 by making sense of what we've been through. 00:28:35.680 --> 00:28:39.100 So many people, myself included, 00:28:39.100 --> 00:28:41.180 have asked themselves, why me? 00:28:41.180 --> 00:28:43.580 Like, why is this happening to me? 00:28:43.580 --> 00:28:46.140 Why did I have to be the one to go through it? 00:28:46.140 --> 00:28:51.140 And so storytelling can bring some redemption 00:28:51.140 --> 00:28:53.340 to what we've been through. 00:28:53.340 --> 00:28:56.500 And it doesn't always necessarily have to 00:28:56.500 --> 00:29:01.580 make us feel like we were supposed to go through 00:29:01.580 --> 00:29:03.340 what we've been through, 00:29:03.340 --> 00:29:06.240 but it can help us find some meaning in it. 00:29:06.240 --> 00:29:09.400 Now, when I say the difference between contamination 00:29:09.400 --> 00:29:10.960 versus redemption stories, 00:29:10.960 --> 00:29:13.940 This is a very, very important piece. 00:29:13.940 --> 00:29:16.520 And I'm gonna talk about how we can work through this 00:29:16.520 --> 00:29:19.800 in just a little bit, but a contamination story, 00:29:19.800 --> 00:29:24.800 when I'm inspecting the stories I tell about myself, 00:29:24.800 --> 00:29:29.400 a contamination story is essentially my life was good 00:29:29.400 --> 00:29:32.580 and then something bad happened and now my life is bad. 00:29:32.580 --> 00:29:36.640 When I was first diagnosed with my Des Moines, 00:29:36.640 --> 00:29:39.640 I gotta admit my story was a contamination story 00:29:39.640 --> 00:29:41.080 for a very long time. 00:29:41.080 --> 00:29:43.600 My life was good, things were going smooth. 00:29:43.600 --> 00:29:45.480 I was headed in the direction I wanted to. 00:29:45.480 --> 00:29:47.360 I had a great job. 00:29:47.360 --> 00:29:48.680 I had a boyfriend. 00:29:48.680 --> 00:29:50.200 I had all of these things 00:29:50.200 --> 00:29:53.240 that I thought were gonna turn out really, really well for me. 00:29:53.240 --> 00:29:55.480 My life was on the track that I wanted. 00:29:55.480 --> 00:30:00.480 And then I had this diagnosis and then my life got hard. 00:30:00.480 --> 00:30:02.320 And so that one thing, 00:30:02.320 --> 00:30:06.200 this diagnosis has contaminated my entire story. 00:30:06.200 --> 00:30:08.520 If you're there and you feel that way, 00:30:08.520 --> 00:30:11.080 That's a natural part of the process. 00:30:11.080 --> 00:30:13.720 It is a part that we really have to work through 00:30:13.720 --> 00:30:15.720 and that we have to make sense of 00:30:15.720 --> 00:30:17.360 in order to get to a point 00:30:17.360 --> 00:30:21.360 where we can tell redemptive stories about our experience. 00:30:21.360 --> 00:30:24.680 Now, when we tell redemptive stories about our experience, 00:30:24.680 --> 00:30:29.240 it doesn't mean that having a desmoid is worth it. 00:30:29.240 --> 00:30:32.800 It doesn't mean that like, I have to say, 00:30:32.800 --> 00:30:35.400 I wouldn't trade it, I'm thankful for my desmoid. 00:30:35.400 --> 00:30:38.200 I know some people can get there, 00:30:38.200 --> 00:30:43.200 but we're trying to bring some meaning to it, you know? 00:30:43.200 --> 00:30:46.600 And a redemption story is essentially 00:30:46.600 --> 00:30:48.900 the reverse of a contamination story. 00:30:48.900 --> 00:30:51.320 I have been through something hard, 00:30:51.320 --> 00:30:54.260 but here are the things that have come out of it. 00:30:54.260 --> 00:30:57.760 I have been through something hard with a Desmoid. 00:30:57.760 --> 00:31:00.460 I have been through treatments that have been hard. 00:31:00.460 --> 00:31:01.980 I have been through rejection. 00:31:01.980 --> 00:31:03.480 I have been through disappointment. 00:31:03.480 --> 00:31:04.960 I have been through hardships. 00:31:04.960 --> 00:31:08.840 I have had to figure things out at a young age 00:31:08.840 --> 00:31:11.480 that I never thought I would have to worry about. 00:31:11.480 --> 00:31:13.060 I have had to grieve things 00:31:13.060 --> 00:31:16.620 that I would have never imagined needing to grieve, 00:31:16.620 --> 00:31:19.120 but I'm thankful. 00:31:19.120 --> 00:31:21.620 And I can say now that I'm thankful 00:31:21.620 --> 00:31:23.780 for the experiences that I've been through 00:31:23.780 --> 00:31:25.680 because they've made me stronger. 00:31:25.680 --> 00:31:27.280 They've provided me opportunities 00:31:27.280 --> 00:31:29.640 to be able to give back to individuals 00:31:29.640 --> 00:31:31.920 who are going through something similar. 00:31:31.920 --> 00:31:34.780 They've provided me an opportunity to relate to people 00:31:34.780 --> 00:31:38.020 in a very different way and to feel the depth 00:31:38.020 --> 00:31:39.900 of what it is to grieve. 00:31:39.900 --> 00:31:42.840 And man, I do some, I wish I could trade that. 00:31:42.840 --> 00:31:45.620 I would love to have never experienced the things 00:31:45.620 --> 00:31:47.980 that I've experienced, but I am thankful 00:31:47.980 --> 00:31:50.580 for the opportunities that it's afforded me 00:31:50.580 --> 00:31:55.580 to be able to connect on a deeper level with individuals. 00:31:55.580 --> 00:31:59.900 And so our goal when we're talking about storytelling 00:31:59.900 --> 00:32:03.240 is how do we go from that contamination story 00:32:03.240 --> 00:32:06.380 to that redemption story or in another way, 00:32:06.380 --> 00:32:08.340 how do we go from telling our story 00:32:08.340 --> 00:32:10.520 as if we're speaking from a wound 00:32:10.520 --> 00:32:12.860 versus speaking from a scar? 00:32:12.860 --> 00:32:16.900 Now, again, the goal is not to practice toxic positivity 00:32:16.900 --> 00:32:19.100 in any way and say that you have to be thankful 00:32:19.100 --> 00:32:20.260 and you have to be grateful 00:32:20.260 --> 00:32:22.660 for the things that you've been through, 00:32:22.660 --> 00:32:27.460 but rather acknowledging that this is a hard journey, 00:32:27.460 --> 00:32:29.220 this is a hard road, 00:32:29.220 --> 00:32:31.180 but there are good and positive things 00:32:31.180 --> 00:32:32.420 that can come out of it. 00:32:32.420 --> 00:32:40.420 The literature often refers to this practice as finding a wildflower amidst the thorns. 00:32:40.420 --> 00:32:46.420 There's a thorn bush that's hard and challenging and we don't want to deal with it. 00:32:46.420 --> 00:32:49.420 What are the wildflowers that are springing up underneath it. 00:32:49.420 --> 00:32:56.420 What are the things that we can hold on to and the things that we can be grateful we've experienced as a result of the things that we've been through. 00:32:56.420 --> 00:33:00.420 Now these last two things, reading fiction and theater. 00:33:00.420 --> 00:33:23.420 This is a recommendation. This is a suggestion for a storytelling sounds really hard. Often, it is really, really powerful to read fiction, or to watch movies or to watch plays, or to watch anything or expose ourselves to anything that allows us to feel emotions that are not 00:33:23.420 --> 00:33:42.420 because sometimes our own emotions can be a little too raw and a little too vulnerable for us to go. And so how can I still feel and process some of these emotions, but I'm going to do it through somebody else's story versus through my story. 00:33:42.420 --> 00:33:51.420 So that's a great place to start if you feel like it's hard to get from this contamination story to this redemption story. 00:33:51.420 --> 00:33:56.860 what books can I read that are inspirational, that tell of hardships that people have been through and 00:33:56.860 --> 00:34:02.460 have overcome. It doesn't have to be a story of a medical diagnosis. It can be a story of 00:34:02.460 --> 00:34:09.180 someone in the military. It can be a story of someone who started their own business. It can be 00:34:09.180 --> 00:34:18.540 the life of Pi. That book is very, very good for helping to stir emotions. But how can we interact 00:34:18.540 --> 00:34:24.940 with emotions if ours feel a little too intense. And then the last thing is deliberate rumination 00:34:24.940 --> 00:34:29.740 and essentially what this means. I've talked about this before. I am a huge, huge, huge 00:34:29.740 --> 00:34:36.700 fan of journaling. And if our minds continue working and our minds continue mulling over our 00:34:36.700 --> 00:34:42.700 experiences, how can we be deliberate in actually processing what's coming up for us and again, 00:34:42.700 --> 00:34:48.380 making sense of what we've been through? I'm a big fan of something called therapeutic journaling, 00:34:48.380 --> 00:34:53.380 which is setting a timer for 15 minutes, four times a week, 00:34:53.380 --> 00:34:56.440 and writing stream of consciousness, 00:34:56.440 --> 00:34:58.320 writing whatever is coming to my mind 00:34:58.320 --> 00:35:00.240 and putting it down on paper, 00:35:00.240 --> 00:35:02.440 and being able to get those thoughts 00:35:02.440 --> 00:35:07.440 and those ideas out specifically about who am I now 00:35:07.440 --> 00:35:09.960 that I've been through this thing? 00:35:09.960 --> 00:35:14.480 Who am I now that I've experienced such challenges 00:35:14.480 --> 00:35:17.360 and what is some of the good potentially 00:35:17.360 --> 00:35:18.560 that has come out of it. 00:35:18.560 --> 00:35:21.800 One of the things that I love about storytelling, 00:35:21.800 --> 00:35:24.300 I was actually talking to Lynn a little bit about this 00:35:24.300 --> 00:35:25.600 right before we jumped on, 00:35:25.600 --> 00:35:29.100 but we are the authors of our own story. 00:35:29.100 --> 00:35:32.420 And we have probably heard that statement before, 00:35:32.420 --> 00:35:37.360 but as authors, we have the ability to edit our stories. 00:35:37.360 --> 00:35:39.700 We have the ability to revisit the things 00:35:39.700 --> 00:35:40.540 that we've been through 00:35:40.540 --> 00:35:44.040 and to add and infuse meaning to those things. 00:35:44.040 --> 00:35:47.300 We have the ability to revise how we feel 00:35:47.300 --> 00:35:50.060 or how we think about a certain experience. 00:35:50.060 --> 00:35:52.020 All of this takes time, 00:35:52.020 --> 00:35:56.580 but if we take that ownership of our story, 00:35:56.580 --> 00:36:00.060 we can often find that we can be led to a place 00:36:00.060 --> 00:36:03.460 of making meaning of the things that we've been through. 00:36:03.460 --> 00:36:04.880 And the final pillar of meaning 00:36:04.880 --> 00:36:07.180 is what is referred to as transcendence. 00:36:07.180 --> 00:36:11.620 And this is essentially just being exposed to something 00:36:11.620 --> 00:36:13.980 where you can experience awe. 00:36:14.820 --> 00:36:17.980 awe is being exposed to something that is bigger 00:36:17.980 --> 00:36:21.500 than ourselves and that is worthy of just like 00:36:21.500 --> 00:36:23.180 being on display. 00:36:23.180 --> 00:36:27.720 When we think of awe, oftentimes we think of like 00:36:27.720 --> 00:36:30.380 being in nature and looking at the stars 00:36:30.380 --> 00:36:34.420 or looking at like those massive, massive trees. 00:36:34.420 --> 00:36:36.500 For me, I live close to the beach. 00:36:36.500 --> 00:36:38.780 And so going to the beach is something that really 00:36:38.780 --> 00:36:41.720 inspires those feelings of awe. 00:36:41.720 --> 00:36:44.280 And awe really is about, you know, 00:36:44.280 --> 00:36:46.360 it's this paradoxical kind of thing 00:36:46.360 --> 00:36:49.400 because it's about being exposed to something 00:36:49.400 --> 00:36:51.160 that highlights the fact 00:36:51.160 --> 00:36:54.600 that there is something out there bigger than me. 00:36:54.600 --> 00:36:57.080 And that thing that's out there that's bigger than me 00:36:57.080 --> 00:36:58.920 might make me feel small 00:36:58.920 --> 00:37:00.920 and it might make me feel insignificant, 00:37:00.920 --> 00:37:04.640 but that's where the paradox is, is that by feeling small, 00:37:04.640 --> 00:37:06.760 I also feel connected to something 00:37:06.760 --> 00:37:08.040 that's much larger than me 00:37:08.040 --> 00:37:10.480 and something that has a lot of meaning. 00:37:10.480 --> 00:37:15.480 Now, many people can do this by being out in nature. 00:37:15.480 --> 00:37:19.160 And I recommend being out in nature as much as possible, 00:37:19.160 --> 00:37:22.680 especially if you are, feel you're in a process of healing. 00:37:22.680 --> 00:37:27.680 I'm exposing yourself to the things in this world. 00:37:27.680 --> 00:37:33.240 Now we might think like, okay, Ashley, that's nice and all, 00:37:33.240 --> 00:37:36.680 but I can't book a trip to go see like the Northern Lights 00:37:36.680 --> 00:37:38.360 or to go see the Great Barrier Reef 00:37:38.360 --> 00:37:39.940 or all of these big things. 00:37:39.940 --> 00:37:44.300 And awe doesn't necessarily have to be those big things either. 00:37:44.300 --> 00:37:48.140 Being out in nature is great, but we can experience feelings of awe 00:37:48.140 --> 00:37:54.420 by coming into contact with art or by writing and telling our story 00:37:54.420 --> 00:38:01.380 through our faith, if we have faith in God or faith in a higher power. 00:38:01.380 --> 00:38:09.260 I was talking to Lynn before we jumped on just about how good my dog is to me. 00:38:09.260 --> 00:38:11.080 I shared this at the beginning too, 00:38:11.080 --> 00:38:13.540 of like he just has this sense of knowing 00:38:13.540 --> 00:38:16.440 when I'm not feeling well and wanting to be like right 00:38:16.440 --> 00:38:18.540 by my side all of the time. 00:38:18.540 --> 00:38:21.700 And so sometimes I might even experience all 00:38:21.700 --> 00:38:25.620 like looking at his little face and realizing like 00:38:25.620 --> 00:38:27.420 this little creature lives with me. 00:38:27.420 --> 00:38:30.020 And he knows that I need to be comforted 00:38:30.020 --> 00:38:33.180 at certain times whenever I'm not feeling well. 00:38:33.180 --> 00:38:35.280 Some of you, if you're parents, you might feel that 00:38:35.280 --> 00:38:36.760 whenever you look at your kids 00:38:36.760 --> 00:38:38.900 and you look at your kids enjoying themselves 00:38:38.900 --> 00:38:45.780 having fun. And so it's not always about grand gestures. In fact, it is not often about the 00:38:45.780 --> 00:38:50.740 things that are really grand that bring meaning into our lives. Those things definitely have an 00:38:50.740 --> 00:38:58.260 influence and an impact in a place. But often making meaning is about recognizing the small 00:38:58.260 --> 00:39:03.140 interactions and the meaning that can be found in those small interactions with individuals, 00:39:03.140 --> 00:39:09.380 small interactions with things that are larger than us, making sense of our story, and also 00:39:09.380 --> 00:39:15.220 understanding and identifying where do I have purpose, even if it is just in simple acts of 00:39:15.220 --> 00:39:24.820 kindness throughout the day. Now some of you may have heard of Victor Frankel. Victor Frankel 00:39:24.820 --> 00:39:32.580 wrote a book called Man's Search for Meeting while he was in Auschwitz, and he essentially says that 00:39:32.580 --> 00:39:35.600 in order to bring meaning into our lives, 00:39:35.600 --> 00:39:38.760 in order to really develop those four pillars 00:39:38.760 --> 00:39:40.600 that we just talked about, 00:39:40.600 --> 00:39:42.660 what are things that we can do 00:39:42.660 --> 00:39:45.560 in order to create that meaning. 00:39:45.560 --> 00:39:49.000 And he, through his research and through his experience, 00:39:49.000 --> 00:39:50.640 he was also a psychologist. 00:39:50.640 --> 00:39:54.160 And so his research informed a lot of his work, 00:39:54.160 --> 00:39:58.480 but also his experience living in Auschwitz. 00:39:58.480 --> 00:40:00.080 He says these things, 00:40:00.080 --> 00:40:03.480 One, by doing a deed or creating a work. 00:40:03.480 --> 00:40:07.320 Now these are very tangible things that we can do 00:40:07.320 --> 00:40:10.520 to help create meaning of the things that we've been through. 00:40:10.520 --> 00:40:13.720 Doing a deed speaks to that belonging, 00:40:13.720 --> 00:40:18.160 that connection piece, speaks to that purpose piece, right? 00:40:18.160 --> 00:40:21.320 Creating a work might speak to the transcendence piece 00:40:21.320 --> 00:40:23.360 of really inspiring awe. 00:40:23.360 --> 00:40:25.880 And this can be service oriented, 00:40:25.880 --> 00:40:28.200 doing something for somebody else, 00:40:28.200 --> 00:40:30.840 or it can be creativity oriented, 00:40:30.840 --> 00:40:33.600 maybe doing art, writing, journaling. 00:40:33.600 --> 00:40:36.040 The second thing says, 00:40:36.040 --> 00:40:39.700 by appreciating the experience of someone or something. 00:40:39.700 --> 00:40:43.840 And I love that he uses the word appreciate. 00:40:43.840 --> 00:40:46.040 I think all of us have experienced 00:40:46.040 --> 00:40:48.200 some degree of toxic positivity, 00:40:48.200 --> 00:40:52.920 which is essentially the pressure to be positive all the time 00:40:52.920 --> 00:40:54.480 and to kind of ignore the fact 00:40:54.480 --> 00:40:57.440 that we've actually been through something challenging. 00:40:57.440 --> 00:41:00.820 And so he doesn't say be thankful for people necessarily, 00:41:00.820 --> 00:41:04.280 but he says to appreciate the experience 00:41:04.280 --> 00:41:06.180 of being with someone or something. 00:41:06.180 --> 00:41:09.160 And again, that can speak to that sense of belonging, 00:41:09.160 --> 00:41:11.440 that can speak to that sense of transcendence 00:41:11.440 --> 00:41:14.980 or even storytelling by connecting with others 00:41:14.980 --> 00:41:17.000 through sharing stories. 00:41:17.000 --> 00:41:20.360 And finally, by choosing your attitude towards suffering. 00:41:20.360 --> 00:41:26.000 This is a big one, and I think it is really inspiring 00:41:26.000 --> 00:41:31.000 that we can take ownership of very little, 00:41:31.000 --> 00:41:34.460 or we can take control of very little in life. 00:41:34.460 --> 00:41:38.660 I would dare to guess that most of us 00:41:38.660 --> 00:41:40.760 did not ask for our diagnoses, 00:41:40.760 --> 00:41:43.580 did not want them, would rather not have them. 00:41:43.580 --> 00:41:46.940 We didn't have a choice in the matter. 00:41:46.940 --> 00:41:49.860 But the thing that we can choose is our attitude 00:41:49.860 --> 00:41:52.180 towards the suffering that we're going through. 00:41:52.180 --> 00:41:53.960 And what might that look like? 00:41:53.960 --> 00:41:58.580 and how do we want to approach this journey? 00:41:58.580 --> 00:42:01.560 Now, the final thing I'm gonna share today 00:42:01.560 --> 00:42:04.540 because we've talked about post-traumatic growth 00:42:04.540 --> 00:42:06.520 throughout our time together 00:42:06.520 --> 00:42:11.320 and that growth really speaks to these areas of change 00:42:11.320 --> 00:42:12.880 that we might see in our life. 00:42:12.880 --> 00:42:14.980 As a result of the trauma that we've been through, 00:42:14.980 --> 00:42:17.080 as a result of our diagnosis, 00:42:17.080 --> 00:42:21.080 we have a very high potential of being able 00:42:21.080 --> 00:42:23.740 to pick up the pieces of the vase 00:42:23.740 --> 00:42:27.220 and create something really beautiful and really new 00:42:27.220 --> 00:42:30.820 out of those inherently worthy and valuable pieces. 00:42:30.820 --> 00:42:34.540 And whenever we strive to make meaning 00:42:34.540 --> 00:42:37.000 and whenever we take an active stance 00:42:37.000 --> 00:42:39.400 towards bringing meaning to our experience, 00:42:39.400 --> 00:42:43.420 these are the things waiting for us on the other side. 00:42:43.420 --> 00:42:45.420 The ability to relate to others 00:42:45.420 --> 00:42:48.420 in deeper and more meaningful ways. 00:42:48.420 --> 00:42:52.300 This YOLO, like you only live once type attitude of, 00:42:52.300 --> 00:42:55.860 I am open to new possibilities. 00:42:55.860 --> 00:42:58.220 I want to experience all that I can 00:42:58.220 --> 00:43:00.380 because I've been confronted with the fact 00:43:00.380 --> 00:43:02.860 that life is short and life can be hard. 00:43:02.860 --> 00:43:07.860 And so I want to enjoy and treasure and hold precious, 00:43:07.860 --> 00:43:10.100 all of the things that I can. 00:43:10.100 --> 00:43:12.900 The development of personal strength and confidence, 00:43:12.900 --> 00:43:14.800 knowing that I have been through hard things 00:43:14.800 --> 00:43:16.820 and I can continue to go through hard things 00:43:16.820 --> 00:43:19.860 and I can continue to come out on the other side. 00:43:19.860 --> 00:43:23.860 in appreciation for life, the relationships that we have, 00:43:23.860 --> 00:43:25.640 the experiences that we have, 00:43:25.640 --> 00:43:28.680 the things that we get the opportunity to be a part of, 00:43:28.680 --> 00:43:31.180 and spiritual development for many of us 00:43:31.180 --> 00:43:35.640 who seek to deepen our relationships with God 00:43:35.640 --> 00:43:37.340 with a higher power, 00:43:37.340 --> 00:43:39.980 or seek spiritual development in some other way. 00:43:39.980 --> 00:43:45.000 I'll leave this slide up here, 00:43:45.000 --> 00:43:48.000 and I know we ran through a really heavy topic 00:43:48.000 --> 00:43:50.580 in a shorter period of time, 00:43:50.580 --> 00:43:52.720 but much of what I talked about today 00:43:52.720 --> 00:43:55.380 is found in these resources. 00:43:55.380 --> 00:43:58.780 And so if this is something that you are struggling with 00:43:58.780 --> 00:44:01.220 or that you feel like you'd like to learn more about 00:44:01.220 --> 00:44:03.780 or you'd like to really invest in the process 00:44:03.780 --> 00:44:07.300 of making meaning of what you have been through, 00:44:07.300 --> 00:44:09.120 these are very powerful resources 00:44:09.120 --> 00:44:10.520 to be able to help with that. 00:44:10.520 --> 00:44:16.240 So Lynn, I'm going to pass it over to you 00:44:16.240 --> 00:44:17.960 in case there's any questions. 00:44:17.960 --> 00:44:20.040 - Okay, great. 00:44:20.040 --> 00:44:21.900 Let's see what we have here. 00:44:21.900 --> 00:44:28.760 Okay, so here's a question for you. 00:44:28.760 --> 00:44:33.280 This was a lot that you presented, right? 00:44:33.280 --> 00:44:36.920 And I guess someone is wondering, 00:44:36.920 --> 00:44:39.120 what if it's just too much? 00:44:39.120 --> 00:44:41.920 Maybe what if I'm just too tired 00:44:41.920 --> 00:44:44.220 to make meaning of all of this? 00:44:44.220 --> 00:44:46.840 - Yeah, great question. 00:44:46.840 --> 00:44:51.840 And the very first session on dealing with Des Moines, 00:44:51.840 --> 00:44:55.560 we've touched on this a little bit. 00:44:55.560 --> 00:44:57.460 The fact that, you know what? 00:44:57.460 --> 00:44:59.500 That's a very, very valid point. 00:44:59.500 --> 00:45:03.480 And especially dependent on where we are in our diagnosis 00:45:03.480 --> 00:45:05.460 and where we are in our treatment, 00:45:05.460 --> 00:45:09.140 sometimes we are just in survival mode 00:45:09.140 --> 00:45:11.340 and it's okay to be in survival mode 00:45:11.340 --> 00:45:14.580 and for the goal to be just to get through. 00:45:14.580 --> 00:45:18.640 Making meaning of our experience comes after some time. 00:45:18.640 --> 00:45:20.440 And so it would be unrealistic 00:45:20.440 --> 00:45:23.180 to put the expectation on ourselves 00:45:23.180 --> 00:45:25.800 to make meaning of the experience immediately 00:45:25.800 --> 00:45:27.360 after we've been confronted 00:45:27.360 --> 00:45:30.260 with the reality of our experience. 00:45:30.260 --> 00:45:34.160 There's some time that we need to just be in survival mode 00:45:34.160 --> 00:45:36.780 to focus on treatment, to focus on healing, 00:45:36.780 --> 00:45:39.020 to focus on stabilizing. 00:45:39.020 --> 00:45:40.900 Then there's some time that we need to take 00:45:40.900 --> 00:45:44.980 to grieve the very real reality 00:45:44.980 --> 00:45:49.180 that there's a lot of loss that can come with this experience. 00:45:49.180 --> 00:45:52.420 And once we've worked through some of those processes 00:45:52.420 --> 00:45:56.180 after some time, then we can really focus on, 00:45:56.180 --> 00:45:59.220 okay, how can I make meaning of what I've been through? 00:45:59.220 --> 00:46:04.020 I celebrated seven years since my diagnosis 00:46:04.020 --> 00:46:05.380 a couple of days ago, 00:46:05.380 --> 00:46:09.900 and I would say it was probably year five of my diagnosis 00:46:09.900 --> 00:46:13.960 that I started to get to a place of diffusing 00:46:13.960 --> 00:46:16.560 from being in survival mode and really grieving 00:46:16.560 --> 00:46:18.380 a lot of the things that I've been through before, 00:46:18.380 --> 00:46:20.600 I could really start to think like, 00:46:20.600 --> 00:46:24.580 what is the meaning of this? 00:46:24.580 --> 00:46:26.900 And so it definitely takes some time 00:46:26.900 --> 00:46:28.980 and it's okay to give yourself the permission 00:46:28.980 --> 00:46:31.460 and the space to be able to take that time 00:46:31.460 --> 00:46:36.460 to just deal with getting healthy and stabilizing first 00:46:36.460 --> 00:46:38.060 to be able to grieve 00:46:38.060 --> 00:46:40.520 and then to be able to focus on these things 00:46:40.520 --> 00:46:41.780 whenever you feel ready. 00:46:41.780 --> 00:46:44.980 - Yeah, I really hear that. 00:46:44.980 --> 00:46:48.500 And I'm making up that a lot of people, 00:46:48.500 --> 00:46:51.620 especially when going through this trauma, 00:46:51.620 --> 00:46:54.340 there's this expectation of like, 00:46:54.340 --> 00:46:55.620 like you were saying, 00:46:55.620 --> 00:46:58.020 if you ask me how I feel, 00:46:58.020 --> 00:47:00.340 I can't even really tell you, right? 00:47:00.340 --> 00:47:02.220 But there's this thing of I have to get out of it. 00:47:02.220 --> 00:47:03.100 I have to get out of it. 00:47:03.100 --> 00:47:04.220 Like it's fine, it's fine. 00:47:04.220 --> 00:47:05.420 Everything's fine. 00:47:05.420 --> 00:47:06.580 - Yeah. 00:47:06.580 --> 00:47:09.220 For some people, maybe that's kind of what I'm making up, 00:47:09.220 --> 00:47:13.340 but I'm hearing what you're saying about really 00:47:13.340 --> 00:47:17.840 taking the time, letting yourself kind of be where you are. 00:47:17.840 --> 00:47:21.260 Okay, and then I have, 00:47:21.260 --> 00:47:24.240 it looks like there's another question that we have here. 00:47:24.240 --> 00:47:29.940 And you even talked about this with regard to your own story. 00:47:29.940 --> 00:47:33.260 This person says, I can't seem to find redemption 00:47:33.260 --> 00:47:34.300 in my story. 00:47:34.300 --> 00:47:36.580 How do you do that? 00:47:36.580 --> 00:47:41.580 - Yeah, it's a great question and it's a tough process 00:47:41.580 --> 00:47:47.340 and it's so individualized for each person. 00:47:47.340 --> 00:47:51.740 And I think one of the first steps is knowing 00:47:51.740 --> 00:47:55.100 that we can take ownership of our stories 00:47:55.100 --> 00:47:58.660 and knowing that we can author our stories 00:47:58.660 --> 00:48:01.060 and knowing that we can take responsibility 00:48:01.060 --> 00:48:04.780 for our attitude towards suffering. 00:48:04.780 --> 00:48:07.660 But then also some of those things that we talked about 00:48:07.660 --> 00:48:10.700 of really learning, you know, 00:48:10.700 --> 00:48:13.180 understanding that there's a biological thing 00:48:13.180 --> 00:48:16.460 that has taken place whenever we've experienced trauma. 00:48:16.460 --> 00:48:18.660 Our nervous system is turned on 00:48:18.660 --> 00:48:20.320 and there are things that happen 00:48:20.320 --> 00:48:25.320 that our body actually is built to do to help protect us. 00:48:25.320 --> 00:48:26.940 But in the long term, 00:48:26.940 --> 00:48:28.540 if we're dealing with something chronic, 00:48:28.540 --> 00:48:30.700 it can actually pose some challenges 00:48:30.700 --> 00:48:33.180 because our body thinks that we're in survival mode 00:48:33.180 --> 00:48:34.580 all of the time. 00:48:34.580 --> 00:48:39.040 And so that inability to know what I'm feeling 00:48:39.040 --> 00:48:41.420 is a great place to start. 00:48:41.420 --> 00:48:44.380 It seems very, very overwhelming and it can be 00:48:44.380 --> 00:48:48.380 because it's confusing, it is overwhelming 00:48:48.380 --> 00:48:50.220 when somebody asks me how I'm feeling 00:48:50.220 --> 00:48:52.460 and I'm like, I literally have no idea. 00:48:52.460 --> 00:48:55.060 I don't even know where to begin to tell you. 00:48:55.060 --> 00:48:59.780 And so doing something like learning about 00:48:59.780 --> 00:49:02.260 what are the emotions that we experience? 00:49:02.260 --> 00:49:05.220 And maybe even getting a book like this 00:49:05.220 --> 00:49:07.780 and journaling through each emotion of, 00:49:07.780 --> 00:49:10.140 have I experienced this before? 00:49:10.140 --> 00:49:13.060 If I have experienced it before, when was it? 00:49:13.060 --> 00:49:16.580 And then a question that sounds maybe a little woo woo, 00:49:16.580 --> 00:49:19.420 but it's actually one of the most significant questions 00:49:19.420 --> 00:49:20.500 you can ask. 00:49:20.500 --> 00:49:24.100 If I felt this emotion, where do I feel it in my body? 00:49:24.100 --> 00:49:25.540 Where do I carry it? 00:49:25.540 --> 00:49:28.420 Do I carry it as tension or pressure in my chest? 00:49:28.420 --> 00:49:31.620 Do I carry it as feeling like I have a weight on my shoulders? 00:49:31.620 --> 00:49:33.640 Do I carry it like I have a headache? 00:49:33.640 --> 00:49:38.100 Our emotions tend to manifest somatically. 00:49:38.100 --> 00:49:40.700 And so being able to also understand 00:49:40.700 --> 00:49:43.020 where they're held in our body 00:49:43.020 --> 00:49:48.020 informs and gives us a lot of information 00:49:48.020 --> 00:49:53.380 that we can then use towards knowing who we are, 00:49:53.380 --> 00:49:55.220 knowing how we feel about certain things, 00:49:55.220 --> 00:49:57.340 and then walking that process 00:49:57.340 --> 00:50:00.700 of being able to create and identify 00:50:00.700 --> 00:50:03.100 the redemptive parts of our story. 00:50:03.100 --> 00:50:05.180 Now, again, I'll reiterate, 00:50:05.180 --> 00:50:08.860 it is to find the redemptive pieces of our story 00:50:08.860 --> 00:50:11.560 is not to discount the fact that we probably 00:50:11.560 --> 00:50:13.660 don't even want this story in the first place. 00:50:13.660 --> 00:50:16.520 You know, like it doesn't necessarily mean 00:50:16.520 --> 00:50:20.260 that we're trying to make a desmoid tumor worth it, 00:50:20.260 --> 00:50:22.740 but we're trying to make it worth something 00:50:22.740 --> 00:50:25.440 and it is worth something sometimes, so. 00:50:25.440 --> 00:50:30.440 - You're on mute, Lynn. 00:50:30.440 --> 00:50:34.440 I hear what you're saying. 00:50:34.440 --> 00:50:37.340 And when you mentioned Atlas of the Heart, 00:50:37.340 --> 00:50:41.600 like I'm imagining there must be Atlas book clubs, 00:50:41.600 --> 00:50:45.520 but wouldn't it be cool if there was, 00:50:45.520 --> 00:50:50.520 if you had a book club and you did a different emotion 00:50:50.520 --> 00:50:55.420 or feeling every week and you talked about it all week, 00:50:55.420 --> 00:51:00.220 and then you book club and then another week of journaling and then a book club. 00:51:00.220 --> 00:51:02.300 That would be cool. That would be like a year and a half. 00:51:02.300 --> 00:51:08.220 I think there's like 89 emotions in here. So that would be quite the commitment, 00:51:08.220 --> 00:51:13.820 but a worthy one. And I think that would actually be really amazing. It's literally one of the things 00:51:13.820 --> 00:51:22.940 that I recommend the most, especially at the beginning of recovery from trauma is really trying 00:51:22.940 --> 00:51:31.260 to dive into do what are emotions because I'm not feeling them anymore and can I tap into these 00:51:31.260 --> 00:51:36.540 emotions especially if I'm learning specifically about what they are and how they affect me. 00:51:36.540 --> 00:51:42.700 So it's a very valuable endeavor. I really love that. I really love that. 00:51:42.700 --> 00:51:49.980 Okay so it looks like we don't have any more questions so we're going to wrap up a little bit 00:51:49.980 --> 00:51:58.460 early. Thank you so much Ashley. I'm sure everyone here can relate to what you've shared and 00:51:58.460 --> 00:52:02.220 maybe next time we get together we'll be able to meet Bobo. 00:52:02.220 --> 00:52:07.020 I know. He jumped up once or twice but. 00:52:07.020 --> 00:52:13.820 Well that was lovely. I feel like we get to know you a little bit better each time. 00:52:13.820 --> 00:52:14.820 - Thank you. 00:52:14.820 --> 00:52:18.820 - So also thank you to the Desmoid Patient 00:52:18.820 --> 00:52:22.820 and Caregiver community for joining us. 00:52:22.820 --> 00:52:24.820 We will, as we have in the past, 00:52:24.820 --> 00:52:27.820 we will be sharing a recording of the webinar 00:52:27.820 --> 00:52:28.820 after it's edited. 00:52:28.820 --> 00:52:31.820 Usually it takes about two to three weeks. 00:52:31.820 --> 00:52:35.820 And as you know, all dealing with Desmoids content 00:52:35.820 --> 00:52:40.820 can be found at dtrf.org/dealingwithdesmoids, 00:52:40.820 --> 00:52:42.820 Dealing with Desmoid is all one word. 00:52:42.820 --> 00:52:54.820 Please make sure you go to to DTRF.org to subscribe to our mailing list so that you receive notification of the recording when it goes public. 00:52:54.820 --> 00:53:00.820 So with regard to dealing with Desmoid, what we're going to do is we're going to take a few months off. 00:53:01.820 --> 00:53:14.820 So please make sure you stay tuned to our social media and our newsletters as we plan for our next session probably in like the second quarter or something of 2023. 00:53:14.820 --> 00:53:26.820 And again, Ashley, thank you so much for providing such amazing information for us to support the community and their healing. 00:53:26.820 --> 00:53:31.300 And we just like to wish everyone a wonderful holiday season. 00:53:31.300 --> 00:53:36.020 Okay, take care everyone. 00:53:36.020 --> 00:53:37.340 Thank you. 00:53:37.340 --> 00:53:41.300 Happy 2023, Ashley, we will definitely be in touch. 00:53:41.300 --> 00:53:46.540 And I hope everybody has a great holiday season. 00:53:46.540 --> 00:53:47.380 Bye bye. 00:53:47.380 --> 00:53:57.380 [music] 00:53:57.380 --> 00:54:07.380 [MUSIC]