WEBVTT 1 00:00:16.109 --> 00:00:18.300 Hi everybody, welcome! 2 00:00:22.590 --> 00:00:24.450 Lynne Hernandez, The DTRF: We're gonna get started in about a minute. 3 00:00:25.590 --> 00:00:27.270 Lynne Hernandez, The DTRF: Just wait for everybody to come in. 4 00:00:50.730 --> 00:00:52.590 We'll give it another minute or so. 5 00:00:54.840 --> 00:00:56.040 And then we'll get started. 6 00:01:09.180 --> 00:01:12.750 Lynne Hernandez, The DTRF: Okay, it looks like we can get started. You want to take it away, Jeanne? 7 00:01:13.260 --> 00:01:35.280 Jeanne Whiting: Yes, hi everybody. Welcome, I'm Jeanne Whiting. I am co-founder and executive director of The Desmoid Tumor Research Foundation. We started the Foundation 16 years ago- still going strong, getting stronger and stronger. One of the great things we been able to provide is 8 00:01:36.750 --> 00:01:45.060 Jeanne Whiting: Educational seminars like this for patients. I'm also a former desmoid patient myself and 9 00:01:46.020 --> 00:01:55.530 Jeanne Whiting: We go through so much trying to find the right treatments in the right positions and dealing with the medical side of the disease, but we all know that there can be 10 00:01:55.830 --> 00:02:05.910 Jeanne Whiting: Mental health ramifications from the diagnosis or treatment, etc, etc. So we're really happy that Ashley Williams, is going to 11 00:02:06.390 --> 00:02:22.290 Jeanne Whiting: continue our seminars here, a series on "Dealing with Desmoids" and the mental health tools that can help us in our journey. So Lynne, would you introduce Ashley for us? This is Lynne Hernandez our Director of Operations. 12 00:02:22.890 --> 00:02:35.040 Lynne Hernandez, The DTRF: Hi, thank you so much Jeanne and I would be honored to present Ashley. Ashley Williams is a licensed clinical social worker and a trauma counselor from South Florida. 13 00:02:35.550 --> 00:02:48.030 Lynne Hernandez, The DTRF: In 2015 she was diagnosed with a desmoid tumor in her left leg. Since then she has become passionate about helping patients heal from the trauma of their diagnosis and treatment. 14 00:02:48.540 --> 00:02:56.130 Lynne Hernandez, The DTRF: Her focus is on those with desmoid tumors, cancer, chronic illness, and other rare diseases. 15 00:02:56.550 --> 00:03:04.770 Lynne Hernandez, The DTRF: Having undergone multiple rounds of treatment herself Ashley believes in a holistic mind and body approach to healing. 16 00:03:05.220 --> 00:03:15.870 Lynne Hernandez, The DTRF: She continues to help individuals from these communities work through their trauma in her counseling practice. So before we get started, I have a couple of 17 00:03:16.680 --> 00:03:24.810 Lynne Hernandez, The DTRF: A couple of instructions for our session together. We welcome questions in the Q&A - you'll see that function below. 18 00:03:25.140 --> 00:03:41.370 Lynne Hernandez, The DTRF: It says Q&A. So if you have a question for Ashley please make sure that you share it in that section. You can share it anytime during the webinar and after her presentation, she will address your question. Also you'll see that 19 00:03:42.480 --> 00:03:57.060 Lynne Hernandez, The DTRF: Below there is a chat function. The chat is going to be open for you to communicate with the community, and we will not be monitoring that so feel free to share whatever you'd like there. Now I'll hand things over to Ashley. 20 00:03:59.430 --> 00:04:13.560 Ashley Williams: Thank you so much Lynne and Jeanne. It is so nice to be back. I'm meeting with all of you just talking about this topic of Dealing with Desmoids and how a desmoid diagnosis can affect our mental health. 21 00:04:14.040 --> 00:04:20.520 Ashley Williams: If you were with us last time during our previous session, we talked about trauma and trauma and resilience. 22 00:04:20.880 --> 00:04:36.030 Ashley Williams: And today we're going to be talking about some things that are independent of that, but that are also building on top of some of the things that we talked about last time. Today we're going to be talking about grief, loss, and post traumatic growth. 23 00:04:37.050 --> 00:04:46.770 Ashley Williams: I do want to preface I shared this last time that this webinar is intended to provide information and it's for educational purposes. 24 00:04:47.070 --> 00:04:53.970 Ashley Williams: But this is not intended to substitute any type of medical or psychiatric or psychological treatment. 25 00:04:54.390 --> 00:05:00.540 Ashley Williams: I am a mental health professional, but I think it's always important to say that I am not your mental health professional 26 00:05:00.870 --> 00:05:08.100 Ashley Williams: And a lot of what we are going to be talking about in all of our sessions and tonight is very individualistic. 27 00:05:08.760 --> 00:05:20.100 Ashley Williams: Each person experiences these things differently and so it's important for us to be able to share kind of a general overview of how these things affect us on our journey 28 00:05:20.370 --> 00:05:26.130 Ashley Williams: but also some of these things you might feel don't apply to you and that's okay too. We're kind of 29 00:05:26.550 --> 00:05:37.950 Ashley Williams: drawing a wide brush to make sure that we're discussing things that have the possibility of affecting our community and a conversation that we're starting and things that we're talking about. 30 00:05:38.430 --> 00:05:48.390 Ashley Williams: Now as Lynne and Jeanne shared, I am a desmoid patient myself and so I'm coming to you from a very personal experience of walking this journey 31 00:05:48.690 --> 00:05:56.790 Ashley Williams: but also from a clinical experience I have spent over a decade working in the realm of trauma and work with many 32 00:05:57.150 --> 00:06:09.630 Ashley Williams: Patients, like Lynne said, who have been diagnosed with cancer, chronic illness or disease, and so a lot of what we're talking about today is something that I work with regularly in my clinical practice as well. 33 00:06:10.380 --> 00:06:17.910 Ashley Williams: Now, just to highlight a couple of the things that we talked about last time, just to kind of jog your memory, a little bit, 34 00:06:18.360 --> 00:06:28.020 Ashley Williams: When we spoke about trauma resilience, one of the most important things that we talked about last time, is how whenever we experience a diagnosis 35 00:06:28.320 --> 00:06:33.360 Ashley Williams: That diagnosis is perceived as a threat to our well being. 36 00:06:33.780 --> 00:06:44.820 Ashley Williams: And because of that, our nervous system responds. And so, when our nervous system responds, we naturally go into that fight or flight mode that most of us know so well. 37 00:06:45.150 --> 00:06:53.580 Ashley Williams: And that fight or flight mode affects our biology. It actually changes the part of the brain that we process information out of. 38 00:06:53.850 --> 00:07:01.830 Ashley Williams: It actually causes physiological reactions, like a rapid heart rate, heavy breathing, sweaty palms, all those types of things. 39 00:07:02.130 --> 00:07:13.500 Ashley Williams: And those are present until the threat is removed, but one of the things that we discussed is that what happens whenever you have a diagnosis and that threat is not removed, then, what do we do? 40 00:07:13.830 --> 00:07:26.040 Ashley Williams: What happens whenever we have to almost like manually override our nervous system and that fight flight or freeze response and bring back rest and bring back calm to our nervous system? 41 00:07:27.150 --> 00:07:35.220 Ashley Williams: We talked a little bit about these different strategies for how to build resilience to trauma whenever we experience it. 42 00:07:35.610 --> 00:07:48.270 Ashley Williams: And some of them may have felt a little simplistic but they're very valuable and important first step to really dealing with the reality of receiving a desmoid diagnosis. 43 00:07:48.930 --> 00:07:57.720 Ashley Williams: We talked about self compassion and being kind to ourselves, giving ourselves permission to feel all of the things that come along with the diagnosis. 44 00:07:58.080 --> 00:08:05.970 Ashley Williams: We talked about expressing the emotions that we feel in different ways, through journaling or storytelling or through mindful play. 45 00:08:06.480 --> 00:08:12.480 Ashley Williams: We talked about the importance of a nervous system, a support system, and especially a support system that 46 00:08:12.930 --> 00:08:27.660 Ashley Williams: provides quiet, in a sense of safety and provides feelings of being protected that having those people in our lives are really important for us as we walk through this journey but also to help us feel as though we have a calm nervous system. 47 00:08:28.560 --> 00:08:37.710 Ashley Williams: And we talked about some other things, including that Vagas nerve stimulation. Now, you may remember that that's the nerve that runs from your brain to your body. That's the nerve that 48 00:08:38.100 --> 00:08:50.430 Ashley Williams: provides the connection between our brain and body and whenever we experience something traumatic that short circuits and so how do we bring that back online? We talked about a number of different strategies for that. 49 00:08:50.910 --> 00:09:10.260 Ashley Williams: And so we're going to be building on top of all of those things that we talked about in our first session and we're going to be adding to some of the knowledge base that we have, but also some of the strategies that we can use to really cope and exist and really thrive during our diagnosis. 50 00:09:11.520 --> 00:09:27.630 Ashley Williams: Now, you may remember this. Last time we talked specifically about this phase one area, the area where it says outcry, numbness, denial, shock, all of those things that we tend to experience during the diagnosis and treatment phase of 51 00:09:28.620 --> 00:09:39.060 Ashley Williams: Having a desmoid. Now one of the things that we talked about is that this is kind of a very general linear timeline and our experience often is not linear. 52 00:09:39.870 --> 00:09:48.480 Ashley Williams: And so, this is a good way for us to kind of make sense of what things look like, but we aren't necessarily expected to follow this to a tee. 53 00:09:49.260 --> 00:09:55.680 Ashley Williams: We talked about phase one. Today we're really going to be talking about phase two and phase three. 54 00:09:56.190 --> 00:10:06.990 Ashley Williams: So when we say phase two, what we're really talking about is okay, now that we have received her diagnosis we've gone through some sort of treatment, even if that treatment is to watch and wait. 55 00:10:07.560 --> 00:10:20.310 Ashley Williams: Now that we've gone through this we're kind of left in the aftermath of what just happened? Like, what my life looks different now I don't know which way is up. Sometimes I feel very 56 00:10:20.790 --> 00:10:33.660 Ashley Williams: Out of sorts, and so what do I do in that phase of kind of adjusting to this reality of having a diagnosis? Phase three is talking about integration, and what that means is whenever we talk about 57 00:10:35.160 --> 00:10:46.740 Ashley Williams: grieving, whenever we talk about receiving a diagnosis, oftentimes we put pressure on ourselves to get over it, and so this shouldn't be affecting me so much, this shouldn't 58 00:10:48.150 --> 00:10:54.600 Ashley Williams: This shouldn't affect my schedule, as much as it does, and so we put pressure on ourselves to just move beyond it. 59 00:10:55.050 --> 00:11:03.810 Ashley Williams: And the goal is not necessarily to get over our diagnosis and the things that come with it, but the goal is to learn how to integrate it into our lives 60 00:11:04.080 --> 00:11:12.180 Ashley Williams: In a way that makes meaning and in a way that allows us to continue moving forward with the reality of existing with our diagnosis. 61 00:11:12.540 --> 00:11:24.990 Ashley Williams: And so today we're really going to be talking about those things that tend to be unique to that after treatment phase, but then also the long term, of living with a desmoid diagnosis. 62 00:11:26.430 --> 00:11:38.250 Ashley Williams: So we're going to start with phase two. The words that were on the last slide said intrusive re-experiencing and working through but really if we boil that down what those words mean is grief and loss. 63 00:11:38.910 --> 00:11:46.350 Ashley Williams: Whenever we receive a diagnosis whenever we are going through active treatment, I know I've talked to so many people. 64 00:11:46.710 --> 00:11:56.400 Ashley Williams: In the desmoid community where sentiments tend to be like Okay, like everybody is there, everybody is present whenever I'm going through active treatment. 65 00:11:56.700 --> 00:12:04.770 Ashley Williams: But then whenever it's over it's like whoo, ok, everybody seems to be happy that this is over, now and we can just move on with our lives. 66 00:12:05.220 --> 00:12:15.780 Ashley Williams: But that's the phase where I'm really left stuck in this position of Oh, my goodness, what just happened to me? How do I make sense of how my life just completely changed? 67 00:12:16.170 --> 00:12:24.150 Ashley Williams: And that phase oftentimes is characterized by grieving the losses that come with a desmoid diagnosis. 68 00:12:24.630 --> 00:12:36.000 Ashley Williams: Because the reality is there is a lot of loss that happens with a desmoid diagnosis and we're going to be talking for the next, for the first part of today's presentation 69 00:12:36.420 --> 00:12:42.390 Ashley Williams: specifically about grief and loss and sometimes it's really difficult to dig into those topics. 70 00:12:42.720 --> 00:12:48.420 Ashley Williams: But I promise you we're not going to stay there I'm not going to leave you there today because, for the second half of our session 71 00:12:48.720 --> 00:12:57.870 Ashley Williams: we're going to be talking about post traumatic growth and what does that look like. Now, you may remember in our last session we talked about post traumatic stress 72 00:12:58.170 --> 00:13:08.940 Ashley Williams: And the fact that up to 95% of people with a cancer diagnosis- that's what most of the research, the research that we have available to us, as people who are diagnosed 73 00:13:09.240 --> 00:13:15.390 Ashley Williams: With the cancer diagnosis- 95% of people will experience post traumatic stress. 74 00:13:15.960 --> 00:13:24.540 Ashley Williams: The research also tells us that 60 to 95% of people who experienced post traumatic stress will also experience post traumatic growth. 75 00:13:24.990 --> 00:13:42.000 Ashley Williams: And so it's a very hopeful number for us to be able to look at and see that, yes, we're going to be talking about the reality of how difficult the loss is associated with our diagnosis, but we're also going to be talking about the reality of what growth looks like after that. 76 00:13:43.410 --> 00:13:45.240 Ashley Williams: So we're going to start off with loss. 77 00:13:46.380 --> 00:14:00.000 Ashley Williams: Now, on the screen you'll see 52 items that are just honestly the beginning, scratching the surface of what loss looks like what does my diagnosis, or can look like, with the does my diagnosis. 78 00:14:00.570 --> 00:14:05.850 Ashley Williams: There are so many things that come with that feeling of losing our health. 79 00:14:06.570 --> 00:14:17.520 Ashley Williams: And for some people, it might be the loss of financial stability, it might be the loss of the carefree life for certain relationships or for some of us, the loss of a limb or 80 00:14:18.510 --> 00:14:30.810 Ashley Williams: A different body part. There are so many different pieces so many different losses that come into play, whenever we talk about receiving a desmoid diagnosis and going through some form of active treatment. 81 00:14:31.320 --> 00:14:38.520 Ashley Williams: I think it's important to kind of put them all up on the screen this way to really validate how 82 00:14:39.390 --> 00:14:48.270 Ashley Williams: Trying this experience can be and, if we look at all of the individual losses that are on the screen here like I said there's 83 00:14:48.660 --> 00:14:54.420 Ashley Williams: Only a few of them are represented, and if we look even deeper into individual pieces, 84 00:14:54.810 --> 00:15:06.630 Ashley Williams: we'll also be able to see that losses kind of compounded within each one of these areas, and what I mean by that is let's take financial stability, for example, like 85 00:15:06.930 --> 00:15:16.830 Ashley Williams: treatment is expensive, none of us asked for this diagnosis, none of us asked to go to treatment and none of us prepared for being able to afford 86 00:15:18.270 --> 00:15:28.830 Ashley Williams: What treatment costs and so with financial stability, yes it's the loss of finances that we didn't necessarily alot for treatment, but also with that, for some, it might be 87 00:15:30.180 --> 00:15:37.830 Ashley Williams: The loss of tangible items. Financial stability might lead to the loss of a car to the loss of the house or needing to downsize. 88 00:15:38.100 --> 00:15:45.450 Ashley Williams: It might mean that i'm changing certain pursuits that I had before, in order to accommodate being able to pay for this diagnosis. 89 00:15:46.230 --> 00:15:51.840 Ashley Williams: Another one that's highlighted here is trust and something that can be compounded underneath that is. 90 00:15:52.320 --> 00:15:58.650 Ashley Williams: Me specifically I was diagnosed when I was 27 years old, so it was my first 91 00:15:59.100 --> 00:16:10.290 Ashley Williams: point of contact with the health care system, and what I had learned up until that point is the doctors are your medical professionals and they know what they're talking about and you listen to them. 92 00:16:10.680 --> 00:16:17.460 Ashley Williams: And so I was told that my first treatment, it was going to be a one and done, I would do that treatment, and then I wouldn't have to deal 93 00:16:18.180 --> 00:16:29.790 Ashley Williams: With this tumor anymore, and unfortunately I had to go back to other rounds of treatment after that and that really affected my trust in the healthcare system. 94 00:16:30.360 --> 00:16:36.420 Ashley Williams: We all know that it's difficult to find a specialist for desmoids and so 95 00:16:37.200 --> 00:16:43.200 Ashley Williams: When you meet with doctors I've had doctors who have walked into the room before and they've held research articles and they're like 96 00:16:43.620 --> 00:16:55.770 Ashley Williams: Look, I I found your tumor on the internet, I read about it and we're fortunate that we have a resource to be able to locate specialists for desmoids and I think that's something that the DTRF provides. 97 00:16:56.430 --> 00:17:04.590 Ashley Williams: But it can lead to some compounded loss or loss of trust in the healthcare system or loss of trust and individual relationships in our lives. 98 00:17:04.830 --> 00:17:14.340 Ashley Williams: People that we thought were going to be there for us. Employers, maybe, where we used to shine at our jobs and now that we're unable to produce as much maybe 99 00:17:16.110 --> 00:17:26.580 Ashley Williams: us taking a backseat in that area, and so it is important for us to understand all of the different kinds of losses that take place and how they can be compounded. 100 00:17:27.090 --> 00:17:36.780 Ashley Williams: Because what we just referenced before, loss alters a lot of things for us. Loss can alter our biology, just like we talked about in our last session. 101 00:17:37.530 --> 00:17:48.270 Ashley Williams: When we go through a loss, especially the types of losses that we experienced as a desmoid patient these losses can be perceived as threats to our well being. 102 00:17:48.660 --> 00:17:56.460 Ashley Williams: And if they're a threat to our well being then it's going to activate that fight or flight response and it's going to trigger this domino effect of 103 00:17:57.360 --> 00:18:03.810 Ashley Williams: Our nervous system, turning on and really kicking into gear, to help us survive this threat that's in front of us. 104 00:18:04.140 --> 00:18:12.960 Ashley Williams: And so, when our body kicks into fight or flight mode like I said before, it alters the parts of our brain that we process information out of. 105 00:18:13.410 --> 00:18:32.550 Ashley Williams: If our body and our brain deems that a certain function is not necessary for our survival, it will shut down, and so our ability to tell stories shuts down. A number of other places shut down because we become in survival mode, especially when ever losses take place. 106 00:18:34.530 --> 00:18:44.250 Ashley Williams: Loss also alters our self narrative and I think that this one is really important, and this one is something that we probably all know really well. 107 00:18:44.940 --> 00:18:51.000 Ashley Williams: I'm going to start with talking about body cues which really means body esteem, I think. 108 00:18:51.690 --> 00:18:58.680 Ashley Williams: Whenever we've received this diagnosis and we deal with all of the different things that come with it, it affects our view of ourselves. 109 00:18:59.130 --> 00:19:16.320 Ashley Williams: In a variety of ways, but it also affects the way that we view the world and how we fit into the world. With body cues for many of us, obviously, our tumor is located in our body, and so it is visible for a lot of us, it causes 110 00:19:17.670 --> 00:19:24.720 Ashley Williams: limps or accommodations that have to be made. For myself, I have a really difficult time walking I walk with a pretty prominent limp. 111 00:19:25.080 --> 00:19:38.610 Ashley Williams: It's pretty easy to see and so having this affect our body esteem, has the ability to impact the way that we view things like our perceived attractiveness, the way that we view 112 00:19:39.000 --> 00:19:47.250 Ashley Williams: Sexual intimacy with our partners, the way that we view, how we fit into the world and how people perceive us. 113 00:19:48.360 --> 00:19:56.340 Ashley Williams: It can also affect our relationships and our narrative around our relationships, I mean I set up before we none of us asked for this. 114 00:19:56.640 --> 00:20:05.550 Ashley Williams: And so, whenever we're first diagnosed we're really just trying to figure it out with the people that we love beside us. And as 115 00:20:06.300 --> 00:20:17.160 Ashley Williams: A patient, I think there are a lot of paradoxical expectations for our caregivers and I'm speaking to the caregivers who are joining us directly to because. 116 00:20:17.730 --> 00:20:29.700 Ashley Williams: I think we have many of us have felt that feeling of like Okay, please stay. Walk with me through this but also I don't want you to feel obligated to this. Please 117 00:20:30.480 --> 00:20:35.550 Ashley Williams: Have grace on the fact that I'm not going to have a lot of energy as I go through treatment, but also like 118 00:20:35.910 --> 00:20:40.650 Ashley Williams: treat me like a normal person don't treat me like I have deficiencies. Please like 119 00:20:40.920 --> 00:20:53.460 Ashley Williams: Stick around or be present or talk to me about these things, but also enjoy your life and go do the things that you want to do, and so often there's a lot of these paradoxical expectations that we're trying to manage in our relationships. 120 00:20:53.790 --> 00:21:04.200 Ashley Williams: And it can be really hard on our relationships at first, and so it's important for us to navigate those with our our closest relationships, but it can put them underneath a lot of stress. 121 00:21:04.830 --> 00:21:09.000 Ashley Williams: As we've already talked about this can affect our mental health, our perception 122 00:21:09.360 --> 00:21:18.720 Ashley Williams: of how well we're doing I think a lot of us can be really hard on ourselves. We tell ourselves things like we should be over this by now, we shouldn't be as affected it's not that bad. 123 00:21:19.020 --> 00:21:31.290 Ashley Williams: Look at other people who are going through things that are more difficult or I perceived to be more difficult than me. I tend to minimize my own experience and not allow myself to express the grief and the pain that I'm going through. 124 00:21:31.980 --> 00:21:40.620 Ashley Williams: It can affect us in our faith if we practice the faith and it can affect our view of God and who he is and why is this happening to me. 125 00:21:41.370 --> 00:21:47.370 Ashley Williams: I'm going to breeze over a very sensitive topic, but the loss of fertility, I think, with a lot of treatments. 126 00:21:47.910 --> 00:21:59.040 Ashley Williams: It has the potential to affect our fertility and that's something that many of us aren't necessarily prepared for, but also I've heard on the flip side too many people who 127 00:21:59.970 --> 00:22:08.370 Ashley Williams: The loss of fertility has felt like a relief like I didn't necessarily want to have kids and I feel guilt over feeling relief over this. 128 00:22:08.820 --> 00:22:21.570 Ashley Williams: And so there are so many complex feelings around the loss of fertility, for those of us who might be experiencing that and how it affects our lives and our hopes and our dreams for the future. 129 00:22:22.590 --> 00:22:30.600 Ashley Williams: We've talked a little bit about encountering medical institutions and just understanding and learning ourselves to be advocates within 130 00:22:31.290 --> 00:22:43.620 Ashley Williams: The medical world and also our narrative around parenting. I should be able to have more energy, I want to show up for my kids more than I'm capable of doing right now, because of the loss of energy. 131 00:22:44.100 --> 00:22:57.870 Ashley Williams: So this is breezing through something that's really significant, but loss alters the way that we view ourselves- whenever we lose things like our health financial stability, trust and other people, 132 00:22:58.920 --> 00:23:05.820 Ashley Williams: Certain hopes and dreams that we might have the future. It affects who we view ourselves to be in a very radical way. 133 00:23:07.230 --> 00:23:18.180 Ashley Williams: And finally, lost affects our daily routines which might not seem like much but it's a big deal whenever a loss comes in and kind of turns our routines up on their head. 134 00:23:18.540 --> 00:23:26.850 Ashley Williams: For those who are going through active treatment this probably applies a little bit more of your days are just turn on turned on end 135 00:23:27.090 --> 00:23:36.150 Ashley Williams: With having to go to different doctors appointments or having to go through treatment or maybe going to a support group are going to see a therapist to talk through your experience 136 00:23:36.510 --> 00:23:49.590 Ashley Williams: or before you were actively going to work or you are taking the kids to school or taking them to their sporting events, I want to speak to our caregivers specifically, especially if you're a caregiver of 137 00:23:50.790 --> 00:24:03.330 Ashley Williams: a teenager who might be going through a desmoid diagnosis. Routine is one of those things that is so important to try to maintain as much as possible, whenever you're going through something like this. 138 00:24:03.690 --> 00:24:16.320 Ashley Williams: Whenever you're going through something that feels and is so uncontrollable, having a routine and a schedule is one of those things that can make it feel like okay there's an anchor somewhere like I know what I'm doing with my day. 139 00:24:16.800 --> 00:24:28.080 Ashley Williams: And I know that that's a little bit scary to talk about because things change and plans change, but as much as possible, being able to keep and maintain a routine and to communicate that routine 140 00:24:28.650 --> 00:24:43.500 Ashley Williams: With those around you, with the patient themselves, with the people in your world, is a really important step in being able to make things feel like there's some sort of anchor whenever it feels like there's a lot of chaos going on. 141 00:24:45.150 --> 00:24:57.330 Ashley Williams: Now we're going to talk about grief briefly as well because loss is the precursor to grief and so whenever we lose something we naturally go into a state of having to grieve those things that we've lost. 142 00:24:57.750 --> 00:25:05.040 Ashley Williams: And I hesitate to share models of grief because models of grief we've all learned what those look like. 143 00:25:05.820 --> 00:25:17.340 Ashley Williams: But they tend to be very linear they tend to tell us okay you follow these steps and once you follow these steps you're over it, and you're done but that's just not a reality for the grief process. 144 00:25:18.180 --> 00:25:19.830 Ashley Williams: Grief is a little bit more like 145 00:25:20.520 --> 00:25:33.120 Ashley Williams: The drawing that's on the right, where okay, it might feel like it's a linear process or it should be a linear process but, in reality, I feel all over the place, I feel like I'm jumping from one thing to the next. 146 00:25:33.510 --> 00:25:43.290 Ashley Williams: If you know about grief models you've probably learned like hey you're supposed to go through denial and then anger and then depression and then bargaining and then you're done with it. 147 00:25:43.800 --> 00:25:50.940 Ashley Williams: But what happens if I am angry and then I feel depressed and then I go back to feeling angry. 148 00:25:51.450 --> 00:25:57.390 Ashley Williams: Did I do it wrong? Like am I not progressing? Am I not grieving right? Am I not going to get over it? 149 00:25:57.930 --> 00:26:02.400 Ashley Williams: And I think grief, one of the most important things for us to discuss 150 00:26:02.700 --> 00:26:12.930 Ashley Williams: Is that it is not a linear process, it is different for every individual, it feels like we're ping pong back and forth so much between a variety of emotions. 151 00:26:13.260 --> 00:26:24.990 Ashley Williams: And oftentimes it doesn't feel like we're making progress. That's the nature in the process of grief so it's really hard to be able to pinpoint like where are we at in this process, and when is it going to be over. 152 00:26:26.310 --> 00:26:33.630 Ashley Williams: I know I said I hesitate sharing models, but i'm going to share just one before we move on, because I think this one captures it perfectly. 153 00:26:34.260 --> 00:26:46.500 Ashley Williams: When we talk about grief, this really is what grief looks like. First we go through this period of shock and numbness which tends to be what happens whenever we are diagnosed and going through treatment. 154 00:26:47.010 --> 00:26:53.520 Ashley Williams: But then that after that phase two that we've been talking about, that part feels like we're ping pong-ing. 155 00:26:53.970 --> 00:27:00.030 Ashley Williams: We're going we're being struck with the reality of here some of the things that we've lost and 156 00:27:00.390 --> 00:27:15.600 Ashley Williams: They they they're overwhelming. It makes me sad to know that those are things that I am in the process of losing or that I've lost. When we become overwhelmed by that feeling, then we tend to go to this restoration phase of okay, let me 157 00:27:17.310 --> 00:27:30.300 Ashley Williams: Accept let me really exist within my present reality, let me try to learn how to exist in this reality, but sometimes we can become so overwhelmed there that we go back to yearning for the things that we've lost. 158 00:27:30.570 --> 00:27:36.450 Ashley Williams: I wish that I can go back, I wish this never happened to me then we become overwhelmed there, so we begin to 159 00:27:36.810 --> 00:27:43.980 Ashley Williams: shift over here, where we start looking forward and we're like okay, how can I move forward and it feels like this ping pong of looking at the past. 160 00:27:44.220 --> 00:27:49.620 Ashley Williams: Looking at the future and I'm kind of stuck in this in between phase and what do I do with this. 161 00:27:50.010 --> 00:27:57.660 Ashley Williams: And we ping pong back and forth between that for a while, before we finally get to the place of really learning and understanding for us 162 00:27:57.930 --> 00:28:06.360 Ashley Williams: individually, how do we integrate this experience into our lives. And so I think it's really important for us to have the idea of grief 163 00:28:06.660 --> 00:28:19.050 Ashley Williams: That it's not linear. It will make you feel crazy sometimes. You will feel like I am not doing this right and I don't think I'm progressing and I don't think I'm ever going to be able to feel differently. 164 00:28:19.440 --> 00:28:29.280 Ashley Williams: But I'm here to assure you that grief is a process and that there is a part where we begin to integrate this experience into our lives in a way that makes meaning, 165 00:28:29.580 --> 00:28:42.660 Ashley Williams: In a way that brings healing, in a way that brings growth, and so while it's very important for us to acknowledge and exist and honor those losses with grief, 166 00:28:43.050 --> 00:28:51.120 Ashley Williams: it's also important for us to look forward at okay, how do I integrate these things into my life in a very real and meaningful way. 167 00:28:51.570 --> 00:28:54.810 Ashley Williams: So that's where we're going to move next and we're going to talk through 168 00:28:55.530 --> 00:29:05.490 Ashley Williams: Post traumatic growth. Now again we only have a short amount of time today to really give a general overview of what post traumatic growth is. 169 00:29:05.820 --> 00:29:23.190 Ashley Williams: And today is intended to hopefully provide encouragement and provide hope that yes, this is a very daunting and very difficult process, but there is growth in this experience and there are things that are positive that come out of this experience as well. 170 00:29:24.510 --> 00:29:32.160 Ashley Williams: I want to start by sharing what we call the shattered vase theory and it's essentially a theory for what post traumatic growth looks like. 171 00:29:32.970 --> 00:29:47.100 Ashley Williams: Imagine, I have this vase on my mantel piece, I had a bunch of flowers in it. I go to water it and I'm clumsy and so while I'm watering it, unfortunately I knock it over it falls to the floor, shatters all over the floor. 172 00:29:48.660 --> 00:29:54.180 Ashley Williams: This vase has just fallen it's experienced the trauma it's broken into pieces, what do I do? 173 00:29:55.320 --> 00:30:07.980 Ashley Williams: Really, I have three options before me. One option is this vase is done for. It's broken, it's worthless to me now, it's useless, I'm just going to sweep up the pieces and I'm going to throw them away. 174 00:30:08.670 --> 00:30:19.110 Ashley Williams: And often when we go through challenging and different experiences, that's what we do. Like this is the worst, I want to get rid of it, I want to put it away, I never want to think about it again. It's useless to me. 175 00:30:20.070 --> 00:30:26.910 Ashley Williams: The second thing that we might do is Oh, my goodness, I love this vase so much and so I'm going to do everything that I can 176 00:30:27.120 --> 00:30:36.180 Ashley Williams: To pick up all the pieces- I'm going to piece it back together, I'm going to use glue, I'm going to use tape, I'm going to try to make sure that I restore it to its original form. 177 00:30:36.870 --> 00:30:43.620 Ashley Williams: But if I do that if I try to restore it to its original form, using glue and using tape, there's going to be 178 00:30:44.130 --> 00:30:53.640 Ashley Williams: A layer of fragility to that. It's not going to be able to assume the same role that it had before, not going to be able to fill it with water, because it's going to leak out. 179 00:30:54.000 --> 00:31:07.500 Ashley Williams: And so, while I might try and put the effort into constructing the reality that this base had before it's trauma, that poses some challenges and sets us up for disappointment. 180 00:31:08.790 --> 00:31:14.730 Ashley Williams: The third thing I can do is I can look at these pieces and I can see them and I can say there is beauty in this. 181 00:31:15.120 --> 00:31:28.860 Ashley Williams: And what I'm going to do is I'm going to reconstruct this into something that is even more beautiful, so I take the pieces, I put them together, I make a mosaic, and that is something that I display to honor the beauty of the vase. 182 00:31:29.370 --> 00:31:33.840 Ashley Williams: And what I really want us to do is to look at things in terms of that metaphor. 183 00:31:34.140 --> 00:31:45.870 Ashley Williams: We are not broken, we are not shattered, we are beautiful and we have been through really difficult experiences and circumstances, and so, how do we take that and how do we move forward in a way that promotes growth. 184 00:31:47.880 --> 00:32:01.260 Ashley Williams: When we talk about post traumatic growth we're talking about positive change in five different areas, and so this is what the research says are typically the areas where we see growth in individuals, and I want to remind you 185 00:32:01.590 --> 00:32:09.840 Ashley Williams: That up to 95% of people who go through adversity will experience some level of post traumatic growth and 186 00:32:11.640 --> 00:32:24.360 Ashley Williams: I think it's also important to note that, when we look at people who have been through difficult things, we tend to look at the people who don't seem to be affected as Oh, my goodness they're so strong. 187 00:32:24.600 --> 00:32:29.400 Ashley Williams: Like they're going through this and they seem completely unaffected by the reality of what's happening to them. 188 00:32:30.180 --> 00:32:38.790 Ashley Williams: But research actually says that the level of post traumatic growth directly correlates to the level of post traumatic stress that we experience. 189 00:32:39.030 --> 00:32:48.780 Ashley Williams: So if we experience a lot of stress, we have the potential for even more growth, and I mean isn't that a picture for most things in our lives, like 190 00:32:49.530 --> 00:32:59.010 Ashley Williams: I learned in physical therapy, I have to put stress on my muscles, I have to put stress on my bones, in order for those to grow in order for those to operate and it's the same thing here. 191 00:32:59.340 --> 00:33:09.570 Ashley Williams: And so I don't want anybody to walk away with the idea of yeah but I've been through too much I'm too broken because that's not true. 192 00:33:10.050 --> 00:33:18.750 Ashley Williams: We've been through a lot of really challenging things- whether you've been through treatment for years and years and years, or whether you just received a diagnosis, this is hard. 193 00:33:19.110 --> 00:33:30.120 Ashley Williams: And this poses a lot of loss and a lot of challenges for us, but again, that level of growth directly correlates to the level of stress that we experience so if you are feeling very stressed, 194 00:33:30.390 --> 00:33:37.350 Ashley Williams: I hope that provides hope that your setup for a high level of growth and really learning from this experience. 195 00:33:38.040 --> 00:33:48.840 Ashley Williams: So the five ways or the five domains of positive change that we typically see is the ability to relate to others, the ability to meet other people in their grief and pain 196 00:33:49.440 --> 00:33:58.530 Ashley Williams: More than we would have been able to before, new possibilities. I love the term YOLO if you know it, it stands for you only live once. This is kind of 197 00:33:58.830 --> 00:34:03.270 Ashley Williams: What this encompasses. It gives us this fresh perspective of like 198 00:34:03.570 --> 00:34:14.610 Ashley Williams: You know what I'm not going to wait to do those things that I want to do I'm going to go ahead and I'm going to do them now. I'm going to live my life now, I'm going to do the things that I enjoy, I'm going to prioritize experience. 199 00:34:15.480 --> 00:34:20.100 Ashley Williams: Levels of personal strength and what we're able to cope with and what we're able to handle. 200 00:34:21.120 --> 00:34:32.700 Ashley Williams: A higher level of appreciation for the life that we've been given and research also says that those who experienced post traumatic stress often gravitate towards spiritual development in different ways. 201 00:34:34.860 --> 00:34:39.990 Ashley Williams: Now we're going to spend the rest of our time together just talking through post traumatic growth. 202 00:34:40.320 --> 00:34:49.500 Ashley Williams: And I like to talk about it in terms of this THRIVE model, because I think it puts it in a pretty neat package for us to kind of understand what we're talking about. 203 00:34:49.800 --> 00:34:57.000 Ashley Williams: and give us maybe some action steps, and how can we pursue growth, despite the difficulties that we're experiencing. 204 00:34:57.360 --> 00:35:07.710 Ashley Williams: And so THRIVE is an acronym it stands for Taking stock, Harvesting hope, Reauthoring, Identifying, Valuing and Expressing change so we're going to go through each one of these quickly. 205 00:35:09.330 --> 00:35:13.410 Ashley Williams: The first one is taking stock and essentially what this means it's 206 00:35:14.100 --> 00:35:29.130 Ashley Williams: synonymous with what we've talked about over the course of the last two sessions. How do we learn to calm our nervous system, so that we can identify what resources we have available to us? how can I regulate my emotions? How can I 207 00:35:29.730 --> 00:35:40.380 Ashley Williams: feel calm in the midst of all of the chaos that's going on? Now all of those strategies that we talked about in last session and we briefly touched on at the beginning of today's session 208 00:35:40.770 --> 00:35:46.890 Ashley Williams: Those are strategies that are going to be golden for your entire desmoid experience. 209 00:35:47.250 --> 00:36:00.660 Ashley Williams: Those help us learn to calm or nervous system in a way that actually activates different parts of our brain. It allows the parts of our brain that have been shut down by the last to be turned back on so that we can use them again. 210 00:36:01.530 --> 00:36:07.350 Ashley Williams: I put all of the different examples up here. I'm going to touch on the ones that are highlighted for today. 211 00:36:08.400 --> 00:36:13.290 Ashley Williams: So the first one - check that you're eating well, you're getting enough sleep, and you're staying physically active. 212 00:36:13.740 --> 00:36:24.150 Ashley Williams: Now I don't know about you, but whenever I hear these things sometimes I cringe a little bit because I have had so many experiences with people telling me well 213 00:36:24.840 --> 00:36:36.120 Ashley Williams: Maybe you should eat more kale Ashley or maybe you should drink sour soft tea or maybe you should take juice plus or you know something to do in order to 214 00:36:37.200 --> 00:36:50.550 Ashley Williams: Maybe make your tumor shrink. Some sort of nutrition that you can use. Now this advice or what we have up here is not advice in regards to that. We're speaking specifically to what are things that help us calmer nervous system. 215 00:36:50.970 --> 00:37:00.480 Ashley Williams: So when we look at eating well and getting enough sleep, those are necessary for calming the nervous system. Now when that fight or flight response turns on 216 00:37:00.720 --> 00:37:11.730 Ashley Williams: It's the rest and digest response that counteracts that. And so resting and digesting eating well and sleeping is going to be really important for calming or nervous system. 217 00:37:12.810 --> 00:37:22.080 Ashley Williams: There are things that are very important to note as well. Things like food sensitivities have the potential to activate our nervous system. 218 00:37:22.530 --> 00:37:30.060 Ashley Williams: And we often think about food sensitivities and other sensitivities as affecting our skin or affecting something 219 00:37:30.810 --> 00:37:35.010 Ashley Williams: That we can see but oftentimes that can actually affect our nervous system. 220 00:37:35.640 --> 00:37:43.470 Ashley Williams: Being physically active if we think about it in terms of if I'm being threatened say I'm being chased by a lion, 221 00:37:43.800 --> 00:37:55.290 Ashley Williams: How do I know how does my nervous system, know that my the threat is no longer there, well, I can fight it or I can flee it, and when I run away from it, then that's when the threat is removed. 222 00:37:55.680 --> 00:38:04.560 Ashley Williams: And so, physical activity is going to be a really important way to kind of note to our body and note to our nervous system, okay, you 223 00:38:05.010 --> 00:38:11.580 Ashley Williams: You fled the threat. The threat is gone. And so physical activity activity, even if it's just walking 224 00:38:11.940 --> 00:38:25.110 Ashley Williams: can be really powerful, even if it's when you're an active treatment and it's walking to the kitchen, you know, to get a glass of water. Those types of things are really powerful and keeping some sort of physical activity in your routine. 225 00:38:26.070 --> 00:38:38.010 Ashley Williams: The next block is really speaking to something called mindfulness. We term it mindfulness and if you're interested, I would encourage you to look up more about it. Because it's a strategy that's really powerful 226 00:38:38.820 --> 00:38:44.310 Ashley Williams: for combating things like anxiety and depression, but also helping to calmer nervous system. 227 00:38:44.760 --> 00:38:50.460 Ashley Williams: Keeping pleasurable things in your life, I think, for at least for me and a lot of people that I've talked to 228 00:38:50.730 --> 00:39:00.720 Ashley Williams: whenever you start going through active treatment it's like you have all of these things that you have to do, and so the first thing that goes are the things that you want to do the things that bring you joy. 229 00:39:01.200 --> 00:39:09.960 Ashley Williams: And I'm telling you that it is so necessary and important for you to keep pleasurable things in your life to keep joy wherever you can find it. 230 00:39:11.130 --> 00:39:20.550 Ashley Williams: The next is observing your reactions without judging. Now we have thoughts all the time, sometimes, our thoughts are positive, sometimes, our thoughts are negative. 231 00:39:21.060 --> 00:39:30.030 Ashley Williams: It is how we judge our thoughts that tends to be how they affect us and how they affect our nervous system. So it's important for us to 232 00:39:31.290 --> 00:39:39.660 Ashley Williams: view our thoughts, like, for example, if I were to be sick in bed, I was sick in bed a lot whenever I went through my first round of chemo. 233 00:39:39.960 --> 00:39:48.540 Ashley Williams: I used to beat myself up all the time, because my thoughts were telling me Ashley, this is free time, you should be doing something with this time, you should be 234 00:39:48.840 --> 00:40:00.090 Ashley Williams: Pursuing something. Now that's a thought that comes up, but the way that I judged it the way that I internalized it was it started to make me feel like I was misusing the time that I had been given. 235 00:40:00.480 --> 00:40:07.380 Ashley Williams: When, in reality, my body needed to rest. My body needed to heal and recover from the treatment that it was going through. 236 00:40:07.680 --> 00:40:19.110 Ashley Williams: So it's important for us not to judge ourselves to be kind to ourselves to have self compassion, as we go through this and to focus on the things that we can do versus the things that we can't do. 237 00:40:19.950 --> 00:40:24.420 Ashley Williams: At the bottom I'm going to highlight these things, avoiding avoidance. 238 00:40:24.720 --> 00:40:35.640 Ashley Williams: The question came up last time well, is it okay to distract ourselves. Yes 100% it's okay to distract ourselves whenever we feel overwhelming. Distraction is a great coping mechanism. 239 00:40:35.970 --> 00:40:41.280 Ashley Williams: But avoidance is basically saying I don't like this I'm going to put it away I'm never going to touch it again. 240 00:40:41.700 --> 00:40:51.870 Ashley Williams: And so it's important for us to recognize that we've been through loss, recognize that we have a need to grieve to allow those feelings and emotions to come through. 241 00:40:52.500 --> 00:41:07.110 Ashley Williams: Connecting with others, is vitally important, and I think, especially in settings like this it's very important because, as it desmoid patient, we often don't know other definitely patients in our physical environment. 242 00:41:07.710 --> 00:41:14.010 Ashley Williams: And so, being able to connect with others who have an understanding of our experience is going to be really valuable. 243 00:41:14.550 --> 00:41:20.160 Ashley Williams: And laughing and smiling might sound trite, but it is so important to 244 00:41:20.880 --> 00:41:27.780 Ashley Williams: build a cache of positive experiences that can outweigh some of the negative experiences that we have. 245 00:41:28.170 --> 00:41:37.470 Ashley Williams: So when I say laughter and smiling whatever brings you joy, if that is a certain TV show, if that's listening to a comedian, if that's hanging out with certain friends. 246 00:41:37.860 --> 00:41:46.890 Ashley Williams: Anything that you can do to bring an enjoy laughter into your life is going to be a very important piece of helping to calm or nervous system. 247 00:41:47.970 --> 00:41:56.790 Ashley Williams: Now, moving on from that, the next piece is harvesting hope and one of the things that I want to talk about here is that hope is a choice. 248 00:41:57.420 --> 00:42:04.740 Ashley Williams: And I want to talk, especially to those who have been through treatment for a significant amount of time now. 249 00:42:05.130 --> 00:42:13.950 Ashley Williams: I know that sometimes hope can be really hard to choose and hope can be really hard to find, because when you have been through multiple different treatments 250 00:42:14.490 --> 00:42:20.760 Ashley Williams: going to another treatment, sometimes feels like okay like let's... is this going to work. 251 00:42:21.570 --> 00:42:30.600 Ashley Williams: There's research that's been done on something called "learned helplessness" and basically what that is is it's research that shows if we have been shown that 252 00:42:30.840 --> 00:42:44.130 Ashley Williams: Our attempts to make things better have failed over and over and over again, we are eventually going to learn that there's nothing that we can do to help ourselves there's nothing that we can do to find hope. 253 00:42:44.910 --> 00:42:57.780 Ashley Williams: There was a study done on animals who are kept in cages and those animals were unable to flee their situation, and so they learned like I'm not able to get out of this I'm trapped here. 254 00:42:58.050 --> 00:43:04.350 Ashley Williams: And when someone came and opened the door those animals still decided not to flee because they had learned that there was no way out. 255 00:43:04.770 --> 00:43:16.350 Ashley Williams: And so I think it's important for all of us to choose hope, no matter how vulnerable it is, no matter how hard it is, every time to choose that there is efficacy and hope and the treatments that we're choosing. 256 00:43:18.090 --> 00:43:32.040 Ashley Williams: I encourage people in order to find hope to look for inspirational stories. To look for other people, whether it's a desmoid patient or whether it's someone completely outside of the desmoid community who inspires you, 257 00:43:32.610 --> 00:43:42.870 Ashley Williams: To look for stories of people who inspire to bring hope. Also setting goals setting really small attainable goals is a really important thing. 258 00:43:43.350 --> 00:43:53.700 Ashley Williams: For me, when I was going through my first round of chemo, I would set a goal of going to the kitchen every day to get myself a glass of water, because I felt sick and that was a difficult task for me. 259 00:43:53.970 --> 00:44:05.850 Ashley Williams: And so that was my goal. I'm going to do this and some days I was able to do it and some days it was more challenging but setting those goals that we can attain are very, very important for this process. 260 00:44:06.960 --> 00:44:15.060 Ashley Williams: I'm going to breeze through some of these last ones, because I want to allow time for questions, but this next one is one that's really important. 261 00:44:15.510 --> 00:44:21.900 Ashley Williams: Reauthoring and it goes with what we discussed of how loss affects our self narrative. 262 00:44:22.500 --> 00:44:35.100 Ashley Williams: Loss affects the way that we view ourselves, the way that we view how we fit into the world, and so it's important for us to understand what is our self narrative and how can we change it. 263 00:44:35.580 --> 00:44:43.980 Ashley Williams: Now I know that I've shared before that storytelling is something that's really powerful and necessary for healing from traumatic things. 264 00:44:44.310 --> 00:44:53.520 Ashley Williams: Whenever we go through trauma that part of our brain that tells stories shuts down, and so we have to try to turn that back on by sharing our story. 265 00:44:53.880 --> 00:45:04.890 Ashley Williams: And through sharing our story, we often find what our narratives tend to be. When I first started sharing my story, I found that I had created a narrative of 266 00:45:05.610 --> 00:45:14.460 Ashley Williams: People leave and so people don't stick around for you, if you have something that's challenging or, if you have something like this, where you're constantly going through treatment. 267 00:45:14.850 --> 00:45:21.360 Ashley Williams: But I didn't know that that was a story that had been created for me until I started telling my story, and I could see that. 268 00:45:21.900 --> 00:45:33.480 Ashley Williams: Then I could start renegotiating my identity. Is that true? Do people leave? What do I need to do in order to maintain and develop and invest in my relationships? 269 00:45:33.780 --> 00:45:40.470 Ashley Williams: Who are the types of people that I have in my life? Do people are they aware of what I'm going through and how they can help me? 270 00:45:40.800 --> 00:45:46.860 Ashley Williams: So there's a lot of different ways that we can renegotiate that identity that has been created for ourselves. 271 00:45:47.580 --> 00:45:56.070 Ashley Williams: Checking metaphors is really important. We tend to speak to ourselves in metaphors and I would tell myself all the time, I feel like I'm on a roller coaster. 272 00:45:56.670 --> 00:46:00.810 Ashley Williams: I've heard people say I feel like I'm like a bird trapped in a cage and I can't get out. 273 00:46:01.320 --> 00:46:12.480 Ashley Williams: Well it's important to know these metaphors that we tell ourselves so that we can change them because the reality is, you can get off of a roller coaster or you can open the door to a cage and you can fly away. 274 00:46:12.900 --> 00:46:29.370 Ashley Williams: And so, knowing the metaphors that we tell ourselves and kind of shifting our focus is really important. And we can tell stories to other people, or we can tell stories through writing and journaling and I always encourage journaling as a very safe place to start. 275 00:46:30.930 --> 00:46:36.240 Ashley Williams: We'll end here with these last three points - the I, the V and the E because they all kind of go together. 276 00:46:37.050 --> 00:46:45.870 Ashley Williams: But one of the most important parts is OK, now that we're renegotiating who we are and understanding what our self narrative is, now that we 277 00:46:46.170 --> 00:46:53.970 Ashley Williams: are accepting the reality of this diagnosis into our lives, what are some of the valuable changes that it's making in our life? 278 00:46:54.390 --> 00:47:02.220 Ashley Williams: Like I said I had the narrative people leave, and so I really had to investigate Okay, are there are some changes that I need to make? 279 00:47:02.520 --> 00:47:11.760 Ashley Williams: Are there certain people that I need to reach out to? Do I need to start receiving help because I don't often receive help, you know it's difficult for me to receive help. 280 00:47:12.150 --> 00:47:20.340 Ashley Williams: And so what changes can I identify that needs to be made? Once I identify those how do I bring value to them? Well 281 00:47:20.880 --> 00:47:29.970 Ashley Williams: what's valuable about having a support system and having people in your life? You don't have to go through things alone, you get help with the difficult things, people come around and support you. 282 00:47:30.480 --> 00:47:46.320 Ashley Williams: And then, once we can identify those things and we assign value to them, how do we express those things in a very active way? Well, we can do big things like advocacy, we can do big things like starting 283 00:47:47.790 --> 00:47:59.460 Ashley Williams: Times, where we can meet together and we can talk about the effect of this diagnosis. Or we can do small things like inviting a friend out for lunch, inviting a friend over, asking a friend for help. 284 00:48:00.060 --> 00:48:05.190 Ashley Williams: um one of the ways that I've often heard people talk about post traumatic growth is 285 00:48:05.700 --> 00:48:16.290 Ashley Williams: That piece of I've learned that it's difficult to trust the healthcare system. Well what are some of the changes that I've identified? I've identified that I need to be a little bit more of an advocate 286 00:48:16.680 --> 00:48:19.050 Ashley Williams: For myself, within the healthcare system. 287 00:48:19.260 --> 00:48:31.590 Ashley Williams: That's a valuable thing because the reality is that desmoid is a rare diagnosis and so there's few people who know a lot about it so it's important for me to know a lot about it. That's the value that it brings to advocate for myself 288 00:48:32.100 --> 00:48:43.260 Ashley Williams: and expressing that in action, while I can participate in other forms of advocacy whether it's for my tumor whether it's speaking up in a meeting at work or something small like that. 289 00:48:43.620 --> 00:48:53.460 Ashley Williams: But I think what post traumatic growth really shows is it's really important for us to learn how to calm our nervous system, learn how to keep hope in our lives, 290 00:48:53.730 --> 00:49:02.100 Ashley Williams: and learn the stories that we tell ourselves so that we can understand what they are and we can change them in a way that brings about growth 291 00:49:03.450 --> 00:49:17.580 Ashley Williams: In even the smallest areas of our life. So I know that we breezed through a very heavy topic really quickly, but I want to open it up for questions if anybody has questions 292 00:49:18.690 --> 00:49:20.940 Ashley Williams: about any of the things that we've talked about today. 293 00:49:23.490 --> 00:49:37.050 Lynne Hernandez, The DTRF: Thanks so much, Ashley. We do have a couple questions for you, so one of our guests asked is exercise a way to build resilience to trauma? 294 00:49:38.220 --> 00:49:56.070 Ashley Williams: 100% um we there's a lot of science behind it. So with exercise, essentially what that does and again it doesn't have to be like going to Crossfit, it doesn't have to be anything extensive, it can be taking walks, it can be 295 00:49:56.730 --> 00:50:11.520 Ashley Williams: going to the gym a couple of times a week. But what exercise does is it actually tells our nervous system okay that threat that was created can be removed, and so there is 296 00:50:12.210 --> 00:50:23.490 Ashley Williams: I'm trying to figure out how much of the science, I want to share with you, but essentially whenever our nervous system turns on there needs to be some sort of action in order for our body to know that the threat is gone. 297 00:50:23.790 --> 00:50:35.280 Ashley Williams: And so, when our nervous system is activated, especially with something like we have our tendency is to kind of turn inward and to kind of 298 00:50:36.060 --> 00:50:50.670 Ashley Williams: avoid and put it aside and what exercise can do is it's a physical way to trigger our nervous system and tell it like, no, there was a threat that's opened and I'm going to close that cycle, I'm going to kind of shut it off and I'm going to let my body know 299 00:50:51.120 --> 00:51:07.740 Ashley Williams: That I'm safe now and that that threat is removed. And so there is a biological function that takes place whenever we exercise that's not just good for health in the way that we talk about it, but it's good for health in being able to signal to our nervous system that it can calm down. 300 00:51:11.790 --> 00:51:13.320 Lynne Hernandez, The DTRF: Okay wonderful. 301 00:51:14.340 --> 00:51:22.680 Lynne Hernandez, The DTRF: Okay, so we have another question coming in. You mentioned doing the things we love as a coping mechanism. 302 00:51:23.160 --> 00:51:36.060 Lynne Hernandez, The DTRF: What is your suggestion for a person who is unable to do any of these things, due to the consequences of treatment for their desmoid. Do you have any suggestions for gaining by in 303 00:51:36.450 --> 00:51:47.460 Lynne Hernandez, The DTRF: Regarding this process and the back and forth from family who are tired of dealing with a family member's desmoid treatment trauma, etc? 304 00:51:48.750 --> 00:52:04.170 Ashley Williams: I'm going to answer the first question first because I what I hear you saying is that this this diagnosis has created a lot of loss and there's a lot of loss that has taken place, that I 305 00:52:04.710 --> 00:52:14.970 Ashley Williams: have to grieve. You know? And there are things for many of us that we used to love to enjoy doing that we're not able to do anymore, as a result of our diagnosis. 306 00:52:15.330 --> 00:52:22.470 Ashley Williams: And with those things, specifically, I would say that grieving is a really necessary part of the process. 307 00:52:23.010 --> 00:52:28.020 Ashley Williams: Because there are some things where the reality is is we may not be able to do those things again. 308 00:52:28.560 --> 00:52:38.940 Ashley Williams: But there are pleasurable things in our lives for all of us that may not be things that we've lost right, we can all find certain things that bring joy 309 00:52:39.600 --> 00:52:50.430 Ashley Williams: into our lives, maybe in a different realm, and so the my first recommendation would be honoring those losses in the way that they deserve by really giving some 310 00:52:51.660 --> 00:53:01.260 Ashley Williams: space for grieving those things, because that is hard and it's some really difficult part of this journey for a lot of us. But then also not 311 00:53:01.680 --> 00:53:09.840 Ashley Williams: limiting ourselves to those being the only things that bring joy into our lives and really choosing to find 312 00:53:10.110 --> 00:53:24.270 Ashley Williams: What are some of the other things that I can do. Focusing on what I can do, and not what I can't do, right, focusing on what I can do and how can I pursue something else or do something else that does bring joy and does bring pleasure into our life. 313 00:53:25.770 --> 00:53:36.480 Ashley Williams: For the second question of gaining buy into this process, for family who are tired of dealing with it, that's really difficult too. 314 00:53:37.650 --> 00:53:49.740 Ashley Williams: It's really difficult for me to comment on that, right now, without knowing the specific situation because I would give different encouragement depending on 315 00:53:51.510 --> 00:54:05.850 Ashley Williams: The different family members or the different people in your life. My encouragement would be that it's really important to have people in your life, where you feel supported and a support system that's necessary is those who allow for quiet, 316 00:54:06.450 --> 00:54:11.760 Ashley Williams: allow for you feeling like you're safe to talk about things, and a sense of being protected. 317 00:54:12.060 --> 00:54:23.250 Ashley Williams: And so, within our family units unfortunately sometimes we may not be able to find that there. And so where else can I seek and gain support for the things that I'm going through. 318 00:54:23.550 --> 00:54:32.040 Ashley Williams: Now that doesn't necessarily mean not including your family in the process, but it means also looking at potential different avenues for that support. 319 00:54:32.490 --> 00:54:39.120 Ashley Williams: Education is also a really important thing, and so I'm going to switch this slide really quick and then I'll stop sharing my screen. 320 00:54:40.110 --> 00:54:45.570 Ashley Williams: But these are some of the resources that were used for the information that we've shared today. 321 00:54:45.990 --> 00:55:01.140 Ashley Williams: The book specifically "What Doesn't Kill Us" is a book on post traumatic growth and so there's a lot of information and maybe a lot of insight for this particular question of how to move forward in that realm. 322 00:55:02.520 --> 00:55:14.760 Ashley Williams: All of these books are very powerful in talking about common nervous system and how trauma affects us on a physiological level and then how to heal and recover and pursue that post traumatic growth. 323 00:55:16.950 --> 00:55:18.390 Ashley Williams: So I hope that answers the question. 324 00:55:19.860 --> 00:55:22.590 Lynne Hernandez, The DTRF: Okay that's great. 325 00:55:24.330 --> 00:55:42.390 Lynne Hernandez, The DTRF: So we have another question coming in, what do you do, how do you classify and treat what can't be PTSD because there's no post trauma. These are tumors many of us will be dealing with for the rest of their for the for the rest of our lives. 326 00:55:44.490 --> 00:55:45.870 Ashley Williams: I agree with that. 327 00:55:46.890 --> 00:55:59.700 Ashley Williams: With PTSD specifically many of us most of us will experience post traumatic stress few of us a few of us will experience post traumatic stress disorder, so there is a difference. 328 00:56:00.660 --> 00:56:13.770 Ashley Williams: With PTSD it isn't necessary that the trauma is over. PTSD is a response to the fact that trauma happened. So even if we're continuing to exist in that trauma 329 00:56:15.090 --> 00:56:26.370 Ashley Williams: it's important it's not necessarily healing all can only take place when the traumas over. Healing can take place as we're continuing to deal with our diagnosis. 330 00:56:26.850 --> 00:56:37.470 Ashley Williams: I think the important thing to note here is PTSD, the D stands for disordered and so post traumatic stress that has become disordered. 331 00:56:37.860 --> 00:56:46.890 Ashley Williams: And how that happens is typically through avoidance and so, if i've experienced trauma and I am going to avoid the fact, 332 00:56:47.220 --> 00:57:02.820 Ashley Williams: i'm going to avoid the fact that It's created a lot of loss, I'm going to avoid grieving, I'm going to avoid touching it and being affected by it and working through it, then that's ultimately what can lead to the disorder part and so it's important for us to really 333 00:57:03.840 --> 00:57:07.110 Ashley Williams: confront some of the things that we have been 334 00:57:08.130 --> 00:57:15.600 Ashley Williams: dealt and that we've been dealing with and I know that sounds like really easy like just don't avoid it, but it could 335 00:57:16.860 --> 00:57:22.260 Ashley Williams: be helped, with the help of a therapist or with a mental health professional really being able to navigate 336 00:57:22.500 --> 00:57:36.180 Ashley Williams: How can I start confronting those things in a way that's not overwhelming because the reason that we tend to avoid those things is because they're overwhelming for us to deal with, and to deal with on a regular basis, and so that would be 337 00:57:37.500 --> 00:57:52.020 Ashley Williams: My input there is with post traumatic stress disorder it's not necessary for the trauma to be over or for the threat to be removed, it's just the fact that trauma happened that causes that post traumatic stress and post traumatic stress disorder. 338 00:57:52.290 --> 00:58:00.000 Ashley Williams: And for us to really be intentional about confronting some of these things head on, even though it is hard and overwhelming, and there are different 339 00:58:00.210 --> 00:58:09.870 Ashley Williams: treatments and strategies to be able to do that, that are really effective that are not just talking about it. Storytelling is important, but there are a lot of different strategies 340 00:58:10.200 --> 00:58:17.580 Ashley Williams: Many of which are talked about in this first book "The Body Keeps The Score". It talks in depth about a lot of the treatment options available. 341 00:58:20.400 --> 00:58:30.030 Lynne Hernandez, The DTRF: Okay, great. We have a couple more questions. Wan you explain a little bit more about the connection between grief and guilt? 342 00:58:31.650 --> 00:58:36.660 Ashley Williams: That's a great question. We research tells us that 343 00:58:37.500 --> 00:58:55.440 Ashley Williams: As humans, comparison is something that happens to us, and so we don't choose to compare ourselves to other people, we have automatic thoughts that come up that compare us to other people. And for someone who has a desmoid diagnosis, this is a very 344 00:58:56.700 --> 00:59:05.670 Ashley Williams: Big reality for us, because we have so many different people who are at so many different places in their diagnosis and fall on the treatment spectrum. 345 00:59:05.940 --> 00:59:14.070 Ashley Williams: We have some people who have been initially diagnosed, who are probably joining us, we have some people who have been on watch and wait for years and that has worked. 346 00:59:14.370 --> 00:59:24.030 Ashley Williams: We've had other people who have gone through treatment after treatment after treatment for years and years, and so there's just this wide berth of experiences with desmoids. 347 00:59:24.330 --> 00:59:35.310 Ashley Williams: And it can become easy for us to compare our experience to other people, and then to determine how challenging or how unchallenging our experience is. 348 00:59:35.670 --> 00:59:49.050 Ashley Williams: And so, if we have an experience that we perceive as maybe not necessarily being that difficult compared to what we see other people experiencing, it automatically brings about feelings of guilt. 349 00:59:50.040 --> 01:00:02.730 Ashley Williams: And we call that survivor's guilt, even though we tend to think about survivor's guilt in terms of bereavement. Survivor's guilt is really whenever I compare myself to anybody else's experience, and I make a judgment based off of it. 350 01:00:03.270 --> 01:00:14.040 Ashley Williams: And so, as we grieve, often a way that we use to cope is okay well, let me look at other people. Well they have more to grief than I should, so I shouldn't be this 351 01:00:14.430 --> 01:00:22.980 Ashley Williams: This heartbroken about it, I shouldn't feel this intensely about it, but that is a danger because grief is necessary, regardless 352 01:00:23.670 --> 01:00:31.950 Ashley Williams: Of the process. Grief and loss is real, regardless of what you've experienced, regardless of where you are in the process, because all of us are here because we 353 01:00:32.490 --> 01:00:41.070 Ashley Williams: Either have or we're caring for someone with a desmoid diagnosis and that in and of itself is a loss and requires a grieving process 354 01:00:41.280 --> 01:00:52.410 Ashley Williams: So it's important for us to recognize that and not compare ourselves to the experience of other people and allow that survivor's guilt potentially that comes up to take hold. 355 01:00:55.410 --> 01:01:02.880 Lynne Hernandez, The DTRF: Okay, great. Can you tell us what you mean when you when you use the term emotional regulation? 356 01:01:04.170 --> 01:01:22.020 Ashley Williams: Yeah when we talk about the taking stock area and calming the nervous system, one of the pieces of doing that is regulating our emotions and when we say that it's essentially being able to identify and understand what emotion am I feeling. 357 01:01:23.070 --> 01:01:32.130 Ashley Williams: And then not allowing it to completely make us feel out of control of that emotion. On this slide, 358 01:01:33.390 --> 01:01:42.420 Ashley Williams: You'll see the book atlas of the heart by Brene Brown. This is an amazing book it's essentially an encyclopedia of emotions. 359 01:01:42.750 --> 01:01:52.800 Ashley Williams: And so, if you feel like you have any difficulty and I'm a therapist I talk about feelings and emotions all day and I have difficulty identifying my emotions sometimes and so 360 01:01:53.130 --> 01:02:02.130 Ashley Williams: It is a wonderful resource to be able to read through to really have a deeper understanding of the different emotions that we feel. 361 01:02:02.610 --> 01:02:15.180 Ashley Williams: And, once we have an awareness of when those emotions come up emotional regulation is really about Okay, how do I manage this in a way that doesn't make me feel like I'm completely out of control of that emotion. 362 01:02:18.540 --> 01:02:19.170 Lynne Hernandez, The DTRF: Okay. 363 01:02:21.900 --> 01:02:32.580 Lynne Hernandez, The DTRF: Looks like we have one other question. One of our guests to say I'm tired of grieving. How long should I expect this grief to last? 364 01:02:34.110 --> 01:03:01.470 Ashley Williams: That is a wonderful question um and like we mentioned, grief is not a linear process. It is very individualized for each person, and I know that we can get stuck in the habit of thinking like I should be over this by now, but that's just not the case grief takes time and grief feels 365 01:03:04.140 --> 01:03:12.060 Ashley Williams: grief like we've talked about it's about integrating a loss into your life and so sometimes grief will pop up years down the road 366 01:03:12.720 --> 01:03:19.200 Ashley Williams: versus it just being something that we deal with right now. I keep something on my desk. 367 01:03:19.920 --> 01:03:29.310 Ashley Williams: That I'm actually if this is the last question, we can close here. I'll read a little something that I keep in read to my clients in regards to grief and I think it's a really 368 01:03:29.550 --> 01:03:37.320 Ashley Williams: paints a really important and vivid picture for us and what to expect of grief so i'll read that and then we can close. 369 01:03:38.670 --> 01:03:46.950 Ashley Williams: It says, "as for grief, you'll find that it comes in waves. When the ship is first wrecked, you're drowning with wreckage all around you. 370 01:03:47.580 --> 01:03:55.290 Ashley Williams: Everything floating around you reminds you of the beauty in the magnificence of the ship that was and is no more and all you can do is float. 371 01:03:56.280 --> 01:04:04.800 Ashley Williams: In the beginning the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don't even give you time to catch your breath. 372 01:04:05.370 --> 01:04:13.920 Ashley Williams: All you can do is hang on and float. After a while, maybe weeks, maybe months you'll find the waves are still 100 feet tall, but they come further apart. 373 01:04:14.790 --> 01:04:20.310 Ashley Williams: When they come, they still crash all over you and wipe you out but in between, you can breathe, you can function. 374 01:04:20.760 --> 01:04:28.140 Ashley Williams: You never know what's going to trigger the grief, it might be a song, a picture, an intersection the smell of coffee, a doctor's office. 375 01:04:28.590 --> 01:04:33.120 Ashley Williams: It can be just about anything and the wave comes crashing but in between waves, there is life. 376 01:04:33.990 --> 01:04:43.440 Ashley Williams: Somewhere down the line and it's different for everybody, you find that waves are only 80 feet tall then 50 feet tall, and while they still come they come further apart. 377 01:04:43.920 --> 01:04:49.350 Ashley Williams: Now you can see them coming, you know that it's an anniversary or birthday or a medical visit. 378 01:04:49.890 --> 01:04:58.140 Ashley Williams: You can see it coming and for the most part, you can prepare yourself and when it washes over you, you know that somehow you will again come out the other side. 379 01:04:58.740 --> 01:05:04.320 Ashley Williams: You may be soaking wet, sputtering still hanging on to some tiny piece of wreckage, but you'll come out." 380 01:05:05.070 --> 01:05:09.420 Ashley Williams: And I think that that's a beautiful picture just showing that grief can feel really intense. 381 01:05:09.900 --> 01:05:19.260 Ashley Williams: It is really intense and it can feel really intense and unrelenting, especially at the beginning of this process and as we're making sense of our experience. 382 01:05:19.800 --> 01:05:30.780 Ashley Williams: Grief continues and that grief, we may continue to feel down the road, but it becomes more manageable. Those periods become farther apart, they can become less intense. 383 01:05:31.140 --> 01:05:42.510 Ashley Williams: And so the goal is not necessarily when do I get over the grief. The goal is how do I live with the grief and how do I prepare for those periods of time, where I know grief will come. 384 01:05:42.930 --> 01:05:48.240 Ashley Williams: Because they'll come sometimes they'll come and we go to that doctor's office, they'll come, and we have that scan. 385 01:05:48.660 --> 01:06:01.890 Ashley Williams: And I think it's important for us to prepare ourselves for this being a part of the journey, the hard part, the frustrating part but a part of the process that we will be experiencing as we continue on with our desmoids. 386 01:06:05.940 --> 01:06:18.180 Lynne Hernandez, The DTRF: Okay. Ashley, thank you. This was amazing. These past two webinar webinars have been so helpful for me. I'm not even a patient. 387 01:06:19.500 --> 01:06:30.090 Lynne Hernandez, The DTRF: So on behalf of the community, I just want to, to thank you. We also thank our patient and care partner community for joining us as well and 388 01:06:30.900 --> 01:06:49.830 Lynne Hernandez, The DTRF: Please note that we will be sharing a recording of this webinar after it's edited. It takes us a little bit of time, we'll probably have it posted in about two weeks, but in the meantime, please note that all Dealing with Desmoids content can be found at 389 01:06:51.030 --> 01:06:55.260 Lynne Hernandez, The DTRF: dtrf.org/dealingwithdesmoids 390 01:06:56.340 --> 01:07:09.630 Lynne Hernandez, The DTRF: and make sure that you go to our website dtrf.org to subscribe to our mailing list so that you will receive notifications for when this webinar has been posted. 391 01:07:11.190 --> 01:07:26.490 Lynne Hernandez, The DTRF: Also, please note that Ashley will be back with us in another two months so keep your eyes peeled for that next notice, and I think that's pretty much it. So thank you again, Ashley. Thank you, community, 392 01:07:26.880 --> 01:07:28.950 Ashley Williams: And we hope everybody has a great night. 393 01:07:32.640 --> 01:07:33.930 Lynne Hernandez, The DTRF: Bye everybody. 394 01:07:46.620 --> 01:07:51.120 Lynne Hernandez, The DTRF: Okay, I think i'm gonna close have a great night Ashley Thank you. 395 01:07:56.040 --> 01:07:57.060 bye everybody.