Merle
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Merle’s journey with early stage and then metastatic breast cancer began well before their first diagnosis. As both diagnostic episodes were fraught with “traumatic experiences,” Merle notes that self-advocacy, is “a through-line in my entire story and a process of having to trust myself.” Six years ago, at the age of 31, Merle detected a large lump in their left breast. Their primary care doctor’s assessment was: “I was probably drinking too much caffeine. It was probably a fibroid.” But considering the hard, oblong, puckering lump, Merle knew “something was not right.” After considerable self-advocacy, they had a biopsy done, which showed Merle had Stage 2B invasive intraductal breast cancer. Treatment included a partial mastectomy and radiation. With a low Oncotype score, Merle declined chemotherapy, noting, “as a young person, who just wanted to go on living my life… I'm willing to just risk it right now.”
A couple of years later, bone metastases were found. This leg of the journey, like the first, began with Merle reporting a symptom (severe back pain) to a primary care doctor who referred them to physical therapy, yet the pain worsened. When Merle returned to the clinic with excruciating pain, the doctor told them, “to not be so dramatic.” Merle then returned to the oncologist who had treated the first cancer episode. Imaging showed “a fuzzy mass where the bone should have been.” Surgery very quickly followed, and treatment entails oral chemotherapy and letrozole, an endocrine therapy that, as Merle describes, “sucks as much estrogen out of the body as possible.” Merle says endocrine therapy has been “a surprisingly difficult part of this journey,” and thinks “the medical system doesn't do a very good job of supporting younger people through an estrogen-receptor-positive breast cancer diagnosis.”
Four years later, Merle is still processing the full meaning of having metastatic breast cancer. As a young, non-binary, Korean/White artist, living at the intersections of gender and race, Merle thinks cancer stories are especially important, "for people who are not represented in the mainstream narratives.” As one who follows both the popular and the medical literatures on breast cancer, Merle observes, “trans and non-binary people are very underrepresented,” and so, “figuring out how to situate oneself is an even lonelier process.” While there is an emerging online community where people post their experiences of being queer and transgender with breast cancer, to Merle’s knowledge, there is no such local (in-person) community.
Facing mortality at such a young age, is “really jarring.” Merle reflects upon getting the diagnosis four years ago when the oncologist said, “we expect you to live at least five years with metastatic cancer.” Now with that “five-year anniversary creeping up,” Merle does not “want to live out of a place of fear,” and embraces life-affirming things. As a graduate student and teacher of creative writing, Merle says being “able to focus on my creative work right now is a gift.” Writing is Merle’s vehicle to process what has happened and to share that experience “as somebody who is queer, non-binary, [and] mixed race.” Support of friends and family are essential to Merle. They visited family in Korea and came back with ginseng and mushrooms, noting that “food is culture,” and “food is also medicine.” Merle also values having a “layered” spiritual core, which incorporates Buddhist philosophy, Korean shamanic practices, with a self-made altar that “connects ancestors from both sides” of their family.
Merle had to advocate for themself after being told their lump was probably just a cyst.
Merle had to advocate for themself after being told their lump was probably just a cyst.
So my journey with breast cancer began when I was 31, in January 2014, when I was diagnosed as stage 2B, with invasive intraductal breast cancer. I actually have had pretty traumatic experiences with primary care. Basically, I had detected a large lump in my left breast. I went to the primary care doctor. And she said that I was basically probably drinking too much caffeine. It was probably a fibroid. I had imaging, I think, the summer prior. And it was assessed. She was like, you know, it's probably just a cyst. But it wasn't. It just didn't fit the description of a cyst. It was oblong, it was hard, and it was puckering. And I knew that something was not right. So basically, you know, she wasn't going to send me off to have it reimaged. I basically had to advocate for that myself. And that is really a through line in my entire story, of having to trust myself, essentially, and be my own strongest advocate.
Merle played a big role in figuring out an approach to breast reconstruction that they preferred.
Merle played a big role in figuring out an approach to breast reconstruction that they preferred.
Or even the options that are presented for surgeries, of people even assuming that, you know--like, for example, I actually came up with an option that was not presented to me for breast surgery, the plastic surgery side of things because there are two breast surgeons, one was oncology, one was a plastic surgeon. So, I had a partial mastectomy. Basically, I lost about a third of the tissue. So things are going to be uneven. And I was presented with the option of, well, you can, like do nothing, of course, and leave things as is. You could have reconstructive surgery, basically like add to the breast that was having the tumor removed. You know, like. And, anyway, there are a few different versions of these things. And I was like, “well, why couldn't we just take away tissue from my right breast to even things out?” And that's where it's always a very personal decision. And I really appreciated that the surgeon was like you know, “whatever you decide is going to be the right choice.” And that felt like a really amazing answer to hear. But, yeah, he was kind of like, “yeah, we can try this.” And of course, there were some risks about that. That's where I've also have pressed for some solutions that are not necessarily the ones that are given to people always at risk of like losing sensitivity or things like that. But, I mean, that's the option that I went with. And it was not an option that was initially presented to me.
Merle reflects on the inherent uncertainties that make many decisions a gamble.
Merle reflects on the inherent uncertainties that make many decisions a gamble.
It's really hard to know. And I think that that's one of the hardest things about this journey, is that it's basically, I describe it to people as gambling. You are gambling all the time with your life. And the best way that I have found my way through it is to be very conscious of the decisions that I'm making and to be listening to my body in the best ways that I know how.
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I decided not to do chemotherapy after just really grappling with what that might mean for me. At the time, I also had oncotype results available to me. I was a 17 out of 100. So, for anyone not familiar with that test, the lower that you score, the thought is that, you're less likely to have a recurrence. And, honestly, as a young person, who just wanted to go on living my life, that was kind of the green light that just gave me a little willpower to just say, you know what, I'm willing to just risk it right now. And I decided to take a chance with skipping chemotherapy. I did do radiation. I did have surgery. But my metastatic diagnosis came pretty soon after that. And I really think that-- I'm not telling this part of the story to say that I should have done chemotherapy. I will just say that I made the best decision that I could in the moment. And I think that that's the best thing that anyone can do. And it's such a highly personal decision that, you know, it's really hard to say if that would have prevented the metastasis or not. People still get metastatic breast cancer, even having done every single thing that is available. So, it's really hard to say if that would have changed anything.
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And to be honest, like, nobody knows how to handle this. We have some tools available, but nobody's figured out how to cure this. So, at this point, both patients and doctors don't have an answer. So, the best thing that I think patients can do -- is to listen to what their bodies are telling them.
Merle reflects on how hormone therapy altered feelings of connectedness with their body.
Merle reflects on how hormone therapy altered feelings of connectedness with their body.
Yeah, I think going through menopause, and then, like I said, being on letrozole, which is pulling even more estrogen out of me, you know just I've completely— I think my relationship to my body has had to be completely renegotiated. My desire is completely different. It's much more subdued. Like, the ways in which I feel in my body are completely different. It just takes more work to be in my body these days, on multiple levels. And, like I was saying in another part of the interview that, after my spine surgery, I basically went into strength training.
Like, I am at my all-time highest weight right now, which is like, as a thing in itself is not an issue, but cancer has dramatically shifted the way that my body is. I am about 70 pounds heavier
than I was when I was first diagnosed as metastatic. I know some patients lose weight. I just happened to gain weight, you know. And some of that might have been— just because of the intensity of the surgery, I was on steroids and other things that helped me to manage pain and all of that. And also just, who knows? So just being in a body that is a little bit softer now, I think I felt most in myself when I was a little bit more angular and a bit more-- like I used to put on muscle really easily. Well, estrogen also helps to build muscle. So it is just, this is just a very different body than I had when I was first diagnosed. And I'm trying to love this body, but it's also a body that like, you know-- it's still one that I'm trying to really embrace, to be honest, in terms of like, I realize like my body is doing the very best that it can, or even just calling my body separate from myself. But it's like, there had to be a lot of negotiations to kind of like feel at home in my body, and that the gender piece is really complicated in terms of, like I said, I actually felt really in myself when I was a cis-identified woman. I had a much more femme presentation for a lot of my life. I think when I started to change shape too. And then, I mean, hormones are so powerful, like you know. And this goes for anyone who has transitioned on hormones or people who have gone through menopause, or what have you. Hormones are so powerful. And so I guess all I can say is that like, hormones have had a dramatic effect on how I feel about myself, how I feel in myself.
Merle feels a connection with their culture through supplements and food.
Merle feels a connection with their culture through supplements and food.
I went to Korea last [DATE] 2018. And they sent me back with, you know, basically, medicinal things, like Korean ginseng. And I have mushrooms on my fridge right now from Korea. So the ways in which I've received support. I mean, that certainly--food is culture. And you know like. And food is also medicine. So the things that I have used as a part of my care has definitely been influenced by who I am in that way.
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Having a spiritual core in my life has been really important as well. I would say that my spirituality is kind of layered. But my mom's grandparents were Buddhist. She is not. But I actually resonate with a lot of Buddhist philosophy. And I also have been incorporating a lot of shamanic practices into my life. So, I do have an altar just to my right that I use to connect to my ancestors on both sides. I mean, this is a part of the work that I am doing in my program. But I am trying to connect more deeply to Korean shamanism. But, you know, I also have a white parent. My dad is my white parent. My grandmother was first generation French. And on her side of the family, a lot of people have been very involved with food. I mean, the same is true of my mom's family to some degree. But I am all of them. So, I would just say that being mixed race, it just means that the ways in which I have called on support, I think especially spiritually, has meant that my--my connections to my ancestors has brought me back to, say, certain forms of herbalism or traditional medicine.
Merle says creative work is sacred and healing for them.
Merle says creative work is sacred and healing for them.
I consider my creative work also my spiritual work. And poetry used to be very tightly wound up with it. It still is a sacred practice. A lot of the songs that people used to sing for sacred purposes, they were almost one and the same with poetry. So, like, you know, it all--and that's what I also mean about like, you know silo-ing, is like, I'm in a poetry program. But really, poetry is an entry point for me to be able to do my spiritual work. And part of that is related to my cancer journey in terms of releasing, but also, like, transforming in the ways that I can, grieving. I mean, this is all, to me, a part of the spiritual work that I need to do for myself and the healing work that I have to do for myself. So, I really think of poems, or even if it's not a poem, if it's a story, or if it's a narrative like this, those are all vehicles or containers for that work to happen. That's not everybody's lens, but that's mine. You know. So it has been a way for me to--I think that sometimes it can be healing to release something into a different form. You know, that, can change how that feels. Or just having a way to not only witness your own story, but maybe even have it witnessed by others, or share it, you know. I think that the sharing feels really important.
Merle reflects on how hormone therapy altered feelings of connectedness with their body.
Merle reflects on how hormone therapy altered feelings of connectedness with their body.
Yeah, I think going through menopause, and then, like I said, being on letrozole, which is pulling even more estrogen out of me, you know just I've completely— I think my relationship to my body has had to be completely renegotiated. My desire is completely different.
It's much more subdued. Like, the ways in which I feel in my body are completely different. It just takes more work to be in my body these days, on multiple levels. And, like I was saying in another part of the interview that, after my spine surgery, I basically went into strength training.
Like, I am at my all-time highest weight right now, which is like, as a thing in itself is not an issue, but cancer has dramatically shifted the way that my body is. I am about 70 pounds heavier
than I was when I was first diagnosed as metastatic. I know some patients lose weight. I just happened to gain weight, you know. And some of that might have been— just because of the intensity of the surgery, I was on steroids and other things that helped me to manage pain and all of that. And also just, who knows? So just being in a body that is a little bit softer now, I think I felt most in myself when I was a little bit more angular and a bit more-- like I used to put on muscle really easily. Well, estrogen also helps to build muscle. So it is just, this is just a very different body than I had when I was first diagnosed. And I'm trying to love this body, but it's also a body that like, you know-- it's still one that I'm trying to really embrace, to be honest, in terms of like, I realize like my body is doing the very best that it can, or even just calling my body separate from myself. But it's like, there had to be a lot of negotiations to kind of like feel at home in my body, and that the gender piece is really complicated in terms of, like I said, I actually felt really in myself when I was a cis-identified woman. I had a much more femme presentation for a lot of my life. I think when I started to change shape too. And then, I mean, hormones are so powerful, like you know. And this goes for anyone who has transitioned on hormones or people who have gone through menopause, or what have you. Hormones are so powerful. And so I guess all I can say is that like, hormones have had a dramatic effect on how I feel about myself, how I feel in myself.
Merle describes their metastatic disease as an invisible disability.
Merle describes their metastatic disease as an invisible disability.
Most people would never guess that I have metastatic breast cancer. I can turn on really easily, and I can keep it together when I'm with people. What people don't see is that after my school week, I'm collapsing in my bed. Or I come home, and I turn on the heat pad. That's, I think, something that maybe a lot of people with chronic illness or maybe other terminal illness might be able to relate to if they essentially are walking around with an invisible disability. It's a little hard sometimes when the people around me don't always grasp what my diagnosis means on a day.
Merle feels they have been lucky so far but knows they have to be realistic about the future.
Merle feels they have been lucky so far but knows they have to be realistic about the future.
I've been lucky that I've been stable since my diagnosis in 2015, with bone mets to the spine. I am oligometastatic, which means that I have a very low disease burden. So my prognosis, as far as metastatic breast cancer goes, is like really the best possible situation, is how my oncologist in [LOCATION] framed it. But that still doesn't mean that the prognosis is all that rosy. I'm reading, a lot of research that people with oligometastatic breast cancer, bone-only mets, are living longer than, say, people who might have organ involvement. I've been lucky in that regard that I might see 10, 15, possibly even 20 years post-diagnosis.
Merle says let the people in your life take things off your plate.
Merle says let the people in your life take things off your plate.
People going through cancer you know, to the best of their ability, should allow themselves to receive support and ask for support. I think sometimes that can be a really hard thing for anyone. But especially going through something like this, I think it becomes even more important. And that there are so many people willing to help in terms of resources, you know. Work those resources. I had to do a lot of research on my own, but, for as much as possible, like, delegate out. And, I mean, this might be a part of like, if people are fortunate enough to have friends that are willing to help them make phone calls. Or even for me, because I was a stage 4 diagnosis, I knew that I was eligible for Social Security, but that's a whole chain of paperwork. And everything's a chain of paperwork. And that can be really overwhelming when you're also dealing with a pretty intense, physical disease. So, I would just say that, for as much as possible, if you have people in your life who can take some of that off your plate, let them.
Merle notes that it’s important to trust yourself on your journey.
Merle notes that it’s important to trust yourself on your journey.
This is where I think each patient just really needs to figure out what is going to work for them. And that, for me, I mean, that also changed, depending on where I was in my journey.
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I think it's most important for people to trust themselves on this journey. I think so often people give away their power, actually, or for people to just say, I want the doctors to tell me what to do. I understand sometimes that that is what people choose. And that's absolutely OK. It was not how I navigated mine.
Merle does not relate to breast cancer’s pink ribbon.
Merle does not relate to breast cancer’s pink ribbon.
What are your thoughts about pink ribbon?
I don't have a whole lot to say about it, except that I don't really relate. I know that there's a lot of conversations out there, especially among metastatic breast cancer patients, about, well, even just the capitalism that gets mixed in with pink ribbon stuff. I, personally, to me, when I first got diagnosed, I just— And I think that's where I was aware, even in that moment, of navigating surgery and all of this stuff, that people feminize it so much. I mean, there's nothing wrong with pink. But, I’m mean, just to pink wash everything and to have the narratives centered so much on, like, cis-women.
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And I just think about like, why is that? Does it have to do with-- it's kind of a tangential thing from pink ribbon. But just, it is a part of the assumptions that are made about who gets breast cancer and what they want, and like, you know, even the solutions that are presented to them.
And so I think like the whole pink ribbon thing can maybe, I don't know. Yeah. I don't know if I have a whole lot to say about the pink ribbon in itself, except that I found it, as a patient, to be slightly off putting.
Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.
Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.
But, I guess, I just want to put it out there that this is a part of my creative work. And like, you know, I share openly about this. And so, also, I'm interested in participating in larger dialogues about this. And actually, that's been something that I haven't really figured out how to do that in terms of, I have done forensics or debate or public speaking in the past. And part of sharing my story feels like, I do want to find ways to enter into a larger dialogue. And there's a non-binary, black femme cancer, breast cancer survivor named [NAME], who I've been following on social media. And, you know, so it's like they are out there, putting their story out there about their own breast cancer journey.
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And I just kind of feel like there just really aren't that many people out there coming from these So this is a very kind of roundabout way of saying, though, that I'm sharing this because I want to be a part of larger dialogues, but also that if there are others out there. Sometimes I think it's about finding each other, you know, and that sometimes when these narratives become more public, it's easier for people to find each other. So, I'm using [NAME] as an example of, their story was one of the few that I could find out there, where I was like, oh, I actually want to see more of this. But there's actually not a ton out there. I am a part of some Facebook groups for like non-binary or trans cancer patients. But it's a relatively small group. But, you know, it's like, I know those people are out there. We are out there. It's just that it's kind of just about how to bring more of these stories forward.
Merle wishes they had been referred to sexual health services for support.
Merle wishes they had been referred to sexual health services for support.
And I started using they/them pronouns, but for most of my life, I was cis-identified. I was really actually comfortable in my body before cancer. But I started to find that losing estrogen, my body has changed shape. I mean, just like most people who have gone through menopause, might be able to identify with, that things are not the same. My libido is not the same. My desire is not the same. But I think that—I, I describe to people that being on, say, letrozole, which is the endocrine therapy drug that I'm on that, like, sucks as much estrogen out of my system as possible, it's kind of like going through menopause plus. Like, you know, and that's where I think the intersection of my age really matters. And I think that the medical system doesn't do a very good job of supporting people who are younger through an estrogen-receptor-positive breast cancer diagnosis. Again, I had to be the one to look up a lot of resources for myself. At [LOCATION], there is actually a center for sexuality right there, in the same place where I was seeing my nurse and doctor and health psychologist. But I had to be the one to find that place. People should be referring people to the center. It's a huge resource. And it's really important-- for people of all ages, but I think especially younger people who would otherwise, you know, like, be kind of in their sexual prime, you know. And for me to go through menopause early, as well as just like, when you're not feeling well, that also has effects on just the whole mental aspect of that too.
Merle says having dogs is “remarkably healing.”
Merle says having dogs is “remarkably healing.”
Yeah, having a dog in my life has made a tremendous difference in my healing journey. So, Sybil is my current dog. I adopted her three months ago from the shelter here in, well, it's actually in [LOCATION]. But it's right outside of [LOCATION]. And I adopted her after losing my dog Claire, who was an English Bull Terrier.
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But Claire, I want to give them both space because they have both really important and very different dogs and very healing, both of them. But Claire was my rock. I mean, I literally called her my pet rock because she helped me through the hardest time in my life. In fact, one of my creative projects right now is a project dealing with our journey. But, you know, she was the one that I knew I had to come home to, you know, in terms of, when I felt like, and I think this is the thing that maybe some people won't understand unless they've been in a journey like this. Like with some brush with mortality. But, you know, there are so many times that I just felt like death was right here. And so, to come home, or to have a reason to go home, you know, to a being that I really loved, was remarkably healing. And she was the one that was kind of a tether for me when I just felt completely, to be honest, just kind of completely torn apart or depressed or you know. She was a constant source of light for me, you know. So, losing her was, I wondered how that would actually affect, I mean, I knew how it was going to affect me. It was very hard. But I knew that she was so instrumental in my healing, I wondered how long I could go without having another dog. And so, I adopted Sybil about six months later. And, like I said, they're very different dogs. But she has continued to be just a huge form of emotional support through this. And I've even written a poem about, on days when even I'm not getting up for myself, I get up because it's time for her to go on a walk. And I open the blinds because I have these plants here. And so, surrounding myself with other living beings is an important part of my journey. And Sybil and Claire have both, you know, given me so much care as well, probably more care than I can really adequately say here.
Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.
Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.
But, I guess, I just want to put it out there that this is a part of my creative work. And like, you know, I share openly about this. And so, also, I'm interested in participating in larger dialogues about this. And actually, that's been something that I haven't really figured out how to do that in terms of, I have done forensics or debate or public speaking in the past. And part of sharing my story feels like, I do want to find ways to enter into a larger dialogue. And there's a non-binary, black femme cancer, breast cancer survivor named [NAME], who I've been following on social media. And, you know, so it's like they are out there, putting their story out there about their own breast cancer journey.
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And I just kind of feel like there just really aren't that many people out there coming from these So this is a very kind of roundabout way of saying, though, that I'm sharing this because I want to be a part of larger dialogues, but also that if there are others out there. Sometimes I think it's about finding each other, you know, and that sometimes when these narratives become more public, it's easier for people to find each other. So, I'm using [NAME] as an example of, their story was one of the few that I could find out there, where I was like, oh, I actually want to see more of this. But there's actually not a ton out there. I am a part of some Facebook groups for like non-binary or trans cancer patients. But it's a relatively small group. But, you know, it's like, I know those people are out there. We are out there. It's just that it's kind of just about how to bring more of these stories forward.
Merle draws on a variety of spiritual practices.
Merle draws on a variety of spiritual practices.
Having a spiritual core in my life has been really important as well. I would say that my spirituality is kind of layered. But my mom's grandparents were Buddhist. She is not. But I actually resonate with a lot of Buddhist philosophy, and I also have been incorporating a lot of shamanic practices into my life. So, I do have an altar just to my right, you know, that I use to connect to my ancestors on both sides.
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Yeah, like my connections to my ancestors has brought me back to, say, certain forms of herbalism or traditional medicine. And even in [LOCATION], you know, I had-, I had a lot of support from what people might call holistic or complementary medicine practitioners. I studied intensively with a shamanic healer in [LOCATION] and continued to be his student, you know. He was such a huge form of support for me, as a teacher and a mentor, but also somebody who offered me a lot of support in my cancer journey.
Merle describes the importance of having a friend at appointments.
Merle describes the importance of having a friend at appointments.
And I actually had a friend—I mean, lots of really great friends—but one friend in particular who was like, “are you bringing an advocate with you?” And I was like, “What?” It didn't even occur to me. And just to even have people in my life just say, “hey, this might be a helpful thing.” So, I started bringing friends with me to my appointments. I thought that was a great suggestion, because it is true. And some doctors will actually outright tell you, “You're not going to remember everything that we tell you, especially if you are going through something that's traumatic or jarring.” And so, bring support.
Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.
Merle wants to share their story to enter a larger public dialogue and hopes to promote more connections among non-binary people with cancer.
But, I guess, I just want to put it out there that this is a part of my creative work. And like, you know, I share openly about this. And so, also, I'm interested in participating in larger dialogues about this. And actually that's been something that I haven't really figured out how to do that in terms of, I have done forensics or debate or public speaking in the past. And part of sharing my story feels like, I do want to find ways to enter into a larger dialogue. And there's a non-binary, black femme cancer, breast cancer survivor named [NAME], who I've been following on social media. And, you know, so it's like they are out there, putting their story out there about their own breast cancer journey.
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And I just kind of feel like there just really aren't that many people out there coming from these So this is a very kind of roundabout way of saying, though, that I'm sharing this because I want to be a part of larger dialogues, but also that if there are others out there. Sometimes I think it's about finding each other, you know, and that sometimes when these narratives become more public, it's easier for people to find each other. So, I'm using [NAME] as an example of, their story was one of the few that I could find out there, where I was like, oh, I actually want to see more of this. But there's actually not a ton out there. I am a part of some Facebook groups for like non-binary or trans cancer patients. But it's a relatively small group. But, you know, it's like, I know those people are out there. We are out there. It's just that it's kind of just about how to bring more of these stories forward.
Merle played a big role in figuring out an approach to breast reconstruction that they preferred.
Merle played a big role in figuring out an approach to breast reconstruction that they preferred.
Or even the options that are presented for surgeries, of people even assuming that, you know--like, for example, I actually came up with an option that was not presented to me for breast surgery, the plastic surgery side of things because there are two breast surgeons, one was oncology, one was a plastic surgeon. So, I had a partial mastectomy. Basically, I lost about a third of the tissue. So things are going to be uneven. And I was presented with the option of, well, you can, like do nothing, of course, and leave things as is. You could have reconstructive surgery, basically like add to the breast that was having the tumor removed. You know, like. And, anyway, there are a few different versions of these things. And I was like, “well, why couldn't we just take away tissue from my right breast to even things out?” And that's where it's always a very personal decision. And I really appreciated that the surgeon was like you know, “whatever you decide is going to be the right choice.” And that felt like a really amazing answer to hear. But, yeah, he was kind of like, “yeah, we can try this.” And of course, there were some risks about that. That's where I've also have pressed for some solutions that are not necessarily the ones that are given to people always at risk of like losing sensitivity or things like that. But, I mean, that's the option that I went with. And it was not an option that was initially presented to me.
Merle describes the importance of having a friend at appointments.
Merle describes the importance of having a friend at appointments.
And I actually had a friend—I mean, lots of really great friends—but one friend in particular who was like, “are you bringing an advocate with you?” And I was like, “What?” It didn't even occur to me. And just to even have people in my life just say, “hey, this might be a helpful thing.” So, I started bringing friends with me to my appointments. I thought that was a great suggestion, because it is true. And some doctors will actually outright tell you, “You're not going to remember everything that we tell you, especially if you are going through something that's traumatic or jarring.” And so, bring support.