Interview with Nyesha Brooks

Diane R. Wiener interviewed Nyesha Brooks for Wordgathering

Editor’s Note: This interview began as an email exchange and then continued via Zoom. The Zoom transcript was edited collaboratively by Nyesha and Diane.

Content Warning: Ableism, depression, suicidal ideation.

WG: Nyesha, thanks, so much, for the opportunity to interview you. Can you please share a bit about yourself with the Wordgathering readers, and also tell us about your Young Adult book, Aaliyah’s Invisible Illness (Just A Girl Rollin Through Life)? Thank you!

NB: I grew up in South Philadelphia and I’m 36 years old. I have two children, a son (16) and a daughter (7). I used to work for a nonprofit organization called W.I.C. which stands for Women, Infant, and Children. It’s a supplemental program that provides mothers and children with nutritional education and healthy food benefits. I was there for eight years until I had to take an early retirement. 

It started in November 2017. I started noticing some changes with my body. First it was arthritis, where my left knee would give out. Then I started noticing other changes like mood swings, not feeling well-rested, and being unable to walk a half of a block. I started frequently going to the emergency department in my neighborhood. But every time I went to the ER they never could find the problem and I would go through a blood test. The doctors started blaming my aches on my weight and what I had for lunch that day. However, it never made sense to me because my weight never hindered my ability to be productive. I always was an active person–walking, dancing, working out at the gym, employed, and a very hands-on mother. I couldn’t understand why I was feeling this way suddenly. I left my job of eight years on January 26, 2018. It became a struggle to get myself dressed for work, traveling, and I wasn’t able to follow through with the task of working anymore. While before I could do the job easily, now I was silently suffering.

After resigning, I saw a neurologist who diagnosed me with Chronic Pain Syndrome. That was good news–I was so happy. Happy because I wasn’t “crazy,” and everything I was feeling was real. The specialist said she could tell I was dealing with a lot of grief because of the way I spoke. I was dealing with the loss of my brother who sadly passed away from an overdose. Prior to him passing it felt like my life was going through so many changes, especially at work. I mean, change is good but not so rapidly. I couldn’t get a break, so it made sense that I was burned out. 

The next specialist I saw was Penn Pain Management. They’re the ones that diagnosed me with Fibromyalgia. Also, that’s when I learned that having this Illness was going to make my life a living hell. It really did and that’s how my book came about. Every time I think about what I went through, I get so emotional and I cry. It’s mind boggling how some doctors are rude to people living with this illness. There were many days I wanted to commit suicide because I felt they weren’t listening to me. I felt defeated, their words over mine. I never wanted to cause any confusion, I wanted to show some respect because they’re the ones that make us feel better. However, I wasn’t being respected, and, at the same time, I was silenced and pushed into directions that weren’t good for me. Reverse psychology is what it felt like, causing me to second guess myself. After that, I learned about patient rights and I switched doctors when I felt unhappy. I’m so glad I did, and today I have a team of specialists supporting me on a monthly basis and allowing me access to medical equipment when needed.

My book, Aaliyah’s Invisible Illness (Just A Girl Rolling Through Life), started with me journaling my frustration. I was so furious with people downplaying our sickness just because we don’t look sick. Fibromyalgia is known as an invisible illness because you can’t see it. No blood testing can prove you actually have it. Doctors have to go by a list of symptoms that they’ve collected and this is how they prove if you have this sickness or not. Unfortunately,  there isn’t a huge or substantial amount of research to rely on and that’s why it’s not focused on. Also we’re banned from the right medications because of the opioid epidemic. So, I developed my book to provide informal counseling to those who suffer from Fibromyalgia and other disabilities. 

I had to learn a lot of things on my own and I just want to share the information because it wasn’t available for me when I was diagnosed. For instance, with obtaining Social Security benefits, some doctors felt I was too young and that I should go back to work–as if I enjoyed being unemployed and sleeping my life away. Little did they know I was beating myself up constantly because I couldn’t fight through the pain. 

My life is consumed by pain, fatigue, and grief. I want my book to change the narrative when it comes to how we’re seen. I have a support group on Instagram called Fibro_Unity where I connect with people all over the world who have disabilities. We face the same obstacles and speak the same language when it comes to being a group of minorities. We’re truly united through our experiences and we stick together. My goal is to reach as many people as possible and establish a relationship with hospitals so hopefully my books can be distributed to patients.

WG: Thank you for your elaborate and thoughtful responses, Nyesha. Can you say a bit more about what you mean by the following: “My life is consumed by pain, fatigue, and grief. I want my book to change the narrative when it comes to how we’re seen”? How does your book change the mainstream narrative you seek to disrupt? Put differently, how might you and others with fibromyalgia be “seen” differently, because of your book?

NB: I think the goal is for acceptance, right? And in fact, a lot of people, of course, don’t look at our sickness like it’s real. We’re constantly just fighting for people to really like understand what we’re going through, so, I just think that my book will help people to understand exactly what life is—what we go through. So that is like the goal–we need support that can help the healing process. Not feeling accepted contributes to depression. Being heard is so important when dealing with fibromyalgia. People who have cancer have walks and stuff like that, but we don’t have walks or related opportunities, on the whole. We don’t have enough resources, and we kind of lean on each other for support.

WG: So, you’re talking about people who share an experience, although each person is different and unique but share an experience of having a diagnosis of fibromyalgia.

NB: Right. We know that pain will be a part of our journey. But we come to learn, too, that we are going to constantly be battling for everything. That’s partly because there is not a lot of support out there, and it’s also because there is not a lot of information publicly available on fibromyalgia. 

WG: One of the things that I think is important about the many important things you’ve just said, which I’m very grateful to know, is that among the people I know who have fibromyalgia, there is a common experience, oftentimes. It’s complex to define and discuss, of course, like people’s multiple identities, so if people have different experiences of social violence and marginalization, those experiences complicate and compound the sensitivities that accompany fibromyalgia.

NB: Yes.

WG: I think that’s partly what the book is about, in listening to you talk about your work. That’s what I want to get to a little bit more in a moment, but first I want to say that–you know, I’m just going to be very direct because it’s me, and I’m a compassionate but also assertive and direct person… So, disability is different from sickness, although they’re connected, and, so, you’ve called fibromyalgia a sickness. I’d like to hear a little bit more about two things right now and then go back to that second point, that other point I just was making, a little bit about impact. So it seems to me that you’re asserting that fibromyalgia is misunderstood among non-fibromyalgia experiences, so people who don’t have fibromyalgia, even if they’re disabled in other ways, people who don’t have fibromyalgia, who are in the world, don’t understand what it’s like to have fibromyalgia and don’t necessarily take it seriously as happens with other illnesses and disabilities that are often taken more seriously.

NB: Most people don’t get where we are coming from. There are some helpful YouTube videos and supportive doctors out there, yes, but it’s also the case that many healthcare professionals don’t understand our experience and do not know how to communicate effectively with us.

WG: And, generally speaking, the healthcare system and members of the public who are nondisabled, not members of the public who are disabled. It sounds like you’re saying a little bit differently, that nondisabled members of the public and the public broadly including some medical professionals still don’t take fibromyalgia as seriously as it needs to be taken and don’t necessarily have the support structures in place that accompany many other experiences of illness and disability.

NB: Right. While I have my experience with my own family and others have their own experiences with theirs, there remains a societal stigma that affects people who live with fibromyalgia. That stigma often leads us to becoming activists. So it’s a constant fight that needs to be heard, because this stigma is something that affects our lives, every day. 

WG: Okay, yeah, I think one of the things that I want to ask you about is how every single person is unique and that’s what you’ve just said and, you know, the journal (Wordgathering) is actually coming at the idea of disability and illness a little bit differently than some of what I understand you to be saying, which is fine, it’s totally fine, and we have people contribute to the journal and participate in the journal from tons of different experiences, and so you said just now, of course, “we don’t want to have this,” which is really a powerful thing to say. Right, and so I would assume or conjecture that because you’re saying everyone’s unique, you would probably agree that some people have it and don’t wish they didn’t have it, they live with it. And some people wish they didn’t have it and hate it. And some people manage it, but find it difficult, and that there are degrees of these different experiences and maybe they vary from day to day, and maybe it varies from person to person and maybe it also depends on what else is going on in someone’s life. Like if they’re also dealing with, you know, all kinds of other complex interconnections.

NB: I’m agreeing. [Nyesha nods]

WG: And I’m a white Ashkenazi Jew, who does not move through the world as a Person of Color. I’m not personally aware of the personal experiences and the interpersonal and systemic experiences that accompany living in a world that affects People of Color with Disabilities differently from white Disabled people.

NB: But that’s the thing, even Caucasian people that have fibromyalgia experience the same thing that I experience.

WG: So you don’t think there’s a difference.

NB: I speak with people all over the world—like, for example, in England. A lot of people in the UK have fibromyalgia. And we all speak the same language when it comes to describing the sickness we have in common. Why isn’t it alarming to healthcare professionals that we aren’t taken as seriously as we clearly deserve? The people with fibromyalgia don’t all know each other, but we have the same symptoms, and we experience the same type of day. I noticed this shared experience when I started a support group on Instagram (as noted), where I’ve talked with a lot of people. I also use an online system where people with fibromyalgia are coming together and we talk openly about all of these things. It’s mind boggling that not having the support and not being taken seriously are still issues for so many people, all over the world.

WG: So there’s an argument that a lot of people offer, which is that misogyny, racism, homophobia, ageism, classism, all these different -isms and -obias (so many, and their interactions and connections), further complicate people’s experiences of disability. And in the world that’s already so ableist and discriminates against disabled people, having various identities makes a difference. And another argument that’s made, of course, is that there is no difference, and that’s what you just said, you said you don’t actually think it matters if somebody is a Person of Color or they’re a person who’s white or they’re a person who comes from a different part of the country, a different part of the world, that fibro is fibro, and that’s a very powerful thing to say. In a way, you’re asserting that it doesn’t matter if somebody has even fewer resources than other people. So I just want to ask if you want to comment further on that point.

NB: Yes there are differences among people, but in terms of the illness itself, the experience is often very similar. That’s why we always say we’re like a family. As I live my life, I experience a lot of depression, I have some regrets, and I have a lot of distress trying to figure out things like, “How did this happen, that we became like this?” Our own doctors act insensitively, even dismissively, when they hear us expressing our concerns and experiences. We feel like we put in more work than the healthcare system puts in for us. We are constantly researching, trying to figure out what is happening to our bodies. There is not as much mainstream research on fibromyalgia as I wish there would be. 

WG: Well, it sounds like you’re saying two things at once in a way, that there are differences and that everyone’s unique. Except there’s an experience that is shared regardless of other simultaneous identity experiences and locations and access to resources, because the symptoms are disruptive. And they symptoms affect people in ways that they share to such a degree that there’s a community that’s established and that’s partly because so many people, including the medical establishment, still do not take fibromyalgia seriously.

NB: Right, right, and that is bigger than me, but I’m not saying that my book would change things overnight. It just gotta start somewhere. I was looking at an episode of The Golden Girls, during which I think the character, Dorothy, was saying that she had fibromyalgia. She was having an interaction with her physician. While I was watching the show, I thought, “oh my God, not that much has changed since then.” I don’t know, I guess that’s the fight in me because I don’t want to give up. Even though it’s a television show, this representation remains very relevant, especially since there hasn’t been a lot of change in all of these years.

WG: Could you say a little more about how you’re an activist and that many people, if not most people with fibromyalgia, have to become activists? That there’s a way that people have to become activists, because of the general population, both disabled and nondisabled people, in some cases doctors–some of them are also disabled, of course. That within mainstream communities and even outlier communities within medical care and beyond, and just in the general public, folks generally don’t believe that fibromyalgia is a thing. And they don’t necessarily understand what it means to live with fibromyalgia, so I want to ask you again, a little bit differently, maybe. In your life you’re saying you became mentally ill and it causes you depression, to live in a way, with this. Is that because it’s hard to fight all the time and it diminishes your self esteem, or is it because the illness contributes to that itself, or is it a combination, or is it something else?

NB: Just the combination, right now. I might not look sick to the naked eye, but I’m in constant pain and it’s draining. And then you do have some thoughts…like, maybe you are better off…but of course… [NB references suicidal thoughts.] You want to continue to fight, but it’s just very hard to be in pain 24/7. It’s exhausting. It takes a lot out of you, mentally and physically.

WG: So something that people with fibromyalgia therefore could potentially have in common with other people who suffer from chronic pain. There’s a giant community of people with chronic illness and chronic pain.

NB: And it is… Really. It’s about grief. 

WG: Grieving what? 

NB: Just having a sickness. We go through a grieving stage. And there can be grief at other times, not just during a stage, exactly. It is an ongoing process. Your life is not the same as you thought it would be. You’re isolated, and you don’t take pleasure in doing things that you were used to doing. That’s one reason why therapy can be so helpful. And why communicating with other people who have fibromyalgia is so important.

WG: So in some ways there’s an overlap with the movement that some people call spoonie.

So some people with fibromyalgia might consider themselves part of the spoonie movement or part of the chronic illness community. Some folks might consider themselves to be part of a broader disability rights movement, but one of the things you’re talking about, I mean, you just referenced suicidal ideation, and I heard you and I took it seriously. And you’re describing the complexity of disability as being in more than one space in someone’s life. It could be physical and emotional and intellectual, all interconnected. And although it’s the case that fibro has different patterns, that there are potentially distinctions because of how people experience life in the world that’s also a world that often is not just ableist and not very woke about disability and chronic illness but obviously, as we’ve been discussing, classist and sexist and homophobic and racist, and so I think you’re saying both of those things, and I think that’s very complex and important to talk about. But one of the things I’m hearing you say also, Nyesha, is that you know that some people are going to take a long time to kind of get it, right? But part of I think your goal is, it seems like your goal is to really get through to people who don’t have disabilities. And I’m interested in this, in particular, because some folks are not that concerned about that anymore; they’re like, “we can’t be bothered with these nondisabled people, we have to be with each other.” Right? If we devote our energy to educating each other and being in community with each other. And so you mentioned, you mentioned the visual reality of things and, of course, some people don’t access things visually, some people can, some people just don’t, some people don’t prefer that. You’ve raised all kinds of issues and layers there with identity and experience. There are some folks who call fibromyalgia an invisible disability, as you said.

NB: Right.

WG: That idea of “invisible” privileges the idea of what is “unseen” but there are the elements of it not being visual or visualized. But it’s also…some people would say “hidden” disability and other people would call it a “nonapparent” disability. Like so, so, couldn’t it then be possible to not just ally with other chronic illness experiences with people who have chronic illnesses, who may call themselves spoonie, etc.? Could it also be possible to ally with other folks with other kinds of hidden disabilities, in solidarity? So how much do you think that’s happening?

NB: My book is about the fibromyalgia community, but it’s for anyone who is dealing with a sickness, condition, or disability. Through the art of storytelling, I’m using a scenario of a family going through events and changes because of fibromyalgia. I’m using this approach to reach people and to bring awareness to the fibromyalgia community. 

WG: Thanks for all of that, Nyesha. I want us to talk about the idea of “normal.” For me, and many others, “normal” is a setting on the dryer (as the saying goes). If someone has access to a dryer, the knob can be set to “normal,” and then the clothes dry a certain way. Who’s normal, though, right? What does normal mean? And part of the Disability Rights work that I think has happened, especially with groups and collectives like Sins Invalid, which is led by Queer and Trans Folks of Color with Disabilities, the idea is that normal is made up, and that we’re all coming from different experiences. And the world is more fairly created when Disabled people are part of that conversation all the time. Because of mutual aid, and the community and family language you’re using, and people being in company with each other, as I often think about it. That is something as Disabled people that we’ve always known how to do, but now the “normals”–I’ll use that word–the “normals” and the nondisabled people, they’re finally getting it, they’re like, “Oh, we have to do this mutual aid, we’re stuck at home, this is awful.” And the rest of us are like, “Oh yeah, that’s hard for you,” and we want to be compassionate, but we’re also like, “Yeah…”

NB: Now they know or have an idea of how we feel all the time. And we aren’t really “normal.” We are expected to be superheroes.

WG: Yes. And as soon as it doesn’t matter to them… it’s not the same, and so that’s part of the big fight about going back to work in-person thing. Why can’t we still stay remote and why can’t we still stay hybrid? Those who even have those options in the first place… And this is a fight in the corporate sector, it’s a fight in higher ed., it’s a fight in all these spaces, and I think this language of normal is something a lot of people grow up with, but in a lot of ways, who cares, who cares about being normal? Yet, I think what you’re saying is you miss certain things, and there’s nothing wrong with mourning something you didn’t get to have. That doesn’t mean you’re being insensitive to Disability. It’s about your experience. You’re allowed to be upset and nobody gets to tell you that doesn’t mean you’re not proud of who you are.

Right? But some people go to a place where they’re like, “I don’t want to have this, but I do, and so I’m going to be who I am,” and some people might be like, “well, you know, I don’t need to change, this is who I am. I don’t like it every minute of the day, but it’s part of who I am and the world needs to be more inclusive.” So I hear you as being in the middle there. And so, like we…if somebody sends Wordgathering something to review about overcoming disability, I’m going to tell you that we are unlikely to publish it. 

NB: I just want to educate people on what we go through and bring awareness to our community. I want to encourage people to feel hopeful. 

WG: You mentioned The Golden Girls in the 80s and I was thinking about how, in the past, the word “gaslighting” didn’t exist, the way it does now, right? Right now, we frequently are familiar with the word gaslighting, and it sounds like you’re describing a kind of way to prevent self-gaslighting, like someone’s like, “yeah, I don’t really have that,” or, “what am I so upset about?” or “I don’t know why I’m feeling this way and I don’t have to do that… I should just doubt myself,” and there’s a self-reproach and a self-questioning that’s almost like, instead of someone else gaslighting somebody, the person with fibro gaslights themselves.

NB: Right. It’s a kind of reverse psychology one does on oneself. When someone challenges your beliefs you can question yourself, or even turn on yourself.

WG: So I think what you’re doing, in a way isn’t only…tell me what you think of this…how do you feel about how we’re talking to each other, by the way, is it okay?

NB: Oh yeah.

WG: Okay, right on. Okay, so, it sounds like you’re saying, “I want to educate nondisabled people about chronic illness. I want to educate disabled people who may not be familiar with having fibro that were, in fact, in some ways, part of the spoonie community, to write. I want to educate people who have fibro to feel better about the fact that they have the right to be in distress, but can get support.”

NB: Right.

WG: And I want to educate doctors, with or without disabilities, to understand that living with fibro can be a pain in the ass.

NB: Right, right!

WG: Am I getting it?

[NB nods.]

WG: Yes? Okay! So, yes, one of the differences in this is fine, and this is part of freedom of expression, and you know honoring language and communication. You know, I don’t have fibro. I have other disabilities that are hidden, and some that are not, but most of them are hidden, I would say, or or, not apparent to most people. And there is a continuing critique that’s made that’s hierarchical, about disability, and when there’s a physical disability if it’s quote unquote “more obvious” it’s more likely to get attention in mainstream spaces. And that the hidden disabilities, even the physical ones like fibro, which are also psychological and cognitive, as you just said before–thank you for that–the more invisible or hidden or not apparent disabilities don’t get as much attention.

NB: Right.

WG: So, in a way, your work advances that critique. And your work says, “You know what? The nonapparent disabilities matter a lot. Wake up!”

NB: Yes. I want to say, “Okay, this is our life, but it would help so much if we had more mainstream support.” I guess it also starts with the healthcare system. We need to be able to get the things we need and deserve, including medical equipment, accessible and affordable health plans, Social Security benefits, and so on. 

WG: You’re asking for medical students, for social work practitioners-in-training, for doctors once they’re finished, and become full, you know, full-board doctors, who are certified, registered, and everything, licensed, and practitioners in social work and other mental health realms, who are done with school and then in the field, all these different providers and healthcare practitioners… You want people to get the importance of fibromyalgia as genuine, as important, as impactful, as complex, as multifaceted, as not just about physicality, as unique to each person, but having things in common across other differences. And it sounds like what you’re saying, in some respects… I’m just going to say something bold, if I haven’t already been bold…(!) I’m going to say you’re sick of ableISM.

NB: Yes!

WG: Let’s examine ableISM. And that’s a sickness. It may be that ableism is the sickness.

NB: Yes.

WG: You know why, like are the… why is it constantly a struggle to help people get woke about disability, about chronic illness, about sickness?

NB: Right?

WG: And that’s what your book is partly trying to do, comment on the exhaustion, and the frustration, and the hope, as you put it together.

NB: Right, and also write my story. It was time for me to do that. I wanted to create entertainment with educational purposes, kind of like one of those back-to-school specials from the 90s. I didn’t want the disabled character to be an add-on, though. I wanted the disabled character to be the focal point.

WG: So tell us a little bit about the book. The book is for which audience?

NB: It is for all ages. The story is about a young person with fibromyalgia. Juvenile fibromyalgia is very similar to adult fibro. I wanted the character to be someone who young people would find relatable. That connection was particularly important to me, even though the book can be for readers of all ages.

WG: How old is the main character?

NB: Aaliyah is 14. 

WG: So could this book be read by young people in middle school and in high school?

NB: Yes, yes. All ages, including youth.

WG: And young adults and tweens. So this is radical, and when I say “radical” I mean changing society from the root. Right, so you want, if i’m understanding you correctly, would you say, this is a fair summary: you want people, starting from not full adulthood, but young adulthood, and youth, to understand the way fibromyalgia affects people in the world, so people can be more compassionate?

NB: Right. It’s about adversity, and, yes, about disability. Except it’s focused on a person with a type of disability that a lot of people don’t know much about. 

WG: Yes, got you! So you want the youth and the young adults and people of all ages, professional social workers, doctors, all the people we were talking about before, but also just people across society like engineers and architects, and people who are doing artwork, and musicians, and you know, everybody, you want everybody…

NB: I’ve met so many people who said, “Oh my God! My grandma has it, and my cousin has it!” It turned out that so many people had fibro, but had never heard of it before, because it was never really talked about in their everyday lives. 

WG: So you’re raising awareness, but you’re also educating people about the presence of something that may affect them or someone in their family later on.

NB: Yes.

WG: If I’m understanding you correctly, I feel like you’re advocating for people to feel not frightened but to feel empowered, but to also warn them… it’s like a cautionary tale, like, “this is going to be tough, but you’re not alone.”

NB: Right. If there’s a will, there’s a way to make it, you know?

WG: But that’s different than an overcoming narrative. To me, that sounds like living with something–accepting it, figuring out how to have support, and in it, being annoyed and frustrated, and tired of ableism as part of that experience, but also being in solidarity with other people. That sounds like part of what you’re getting at. And where can people get the book now?

NB: Well, I self-published on Amazon, so that’s where they can get it. I have an ebook and a paperback book. [Note: ebook is in Kindle format.]

WG: Is there anything else that you would like to add?

NB: I’m not fighting for myself. I’m fighting for everyone. It’s important. When you have a sickness, life becomes different. It is differently meaningful.

WG: Can you say more about what you mean about that?

NB: Being sick has its downfalls, but a lot of good has happened since I became sick. For instance, I’m fearless. I stand up for myself. I don’t back down, and these are the things that I didn’t have, so, it’s funny how, when we talk in the fibro community—in the support groups, in the discussions we have—we share the good things that have come out of having the condition, if that makes sense.

WG: Absolutely, absolutely, and that doesn’t mean you’re like, “yay!” I know what you’re saying is, “this is complicated, this is a nuanced part of who I am.” And this is different from what you’ve talked about at the very beginning and that’s why I was paused and I want to tell you, with great care, I think what you just said, might be the most important part of the whole conversation. Because everything else you said is really important, of course, I’m not ranking it, really, but the reason I think this part is possibly the most important for me as a listener, and I think for our readers, is because you’re describing a nuanced, complicated, messy experience, that is not one thing. It doesn’t just suck, it isn’t just redemption, it isn’t just yay, it isn’t just an opportunity about which to learn that you wouldn’t have had without that diagnosis, it isn’t just, you know, the kind of thing people say sometimes: “God doesn’t give you something you cannot handle,” for those people who believe in that orientation. And that’s not easy to hear or access otherwise for some folks who are disabled, like what you know, and then, of course, there are folks with disabilities who are very faith-based and so negotiate some of that language. We’ve got people praying for us, and wanting us to be cured and healed, and we do all kinds of stuff all the time to negotiate life. “We” meaning we who are different people with different disabilities, and so on.

NB: Yes. It’s not just about finances. I really want the message out there. It’s important. 

WG: You want to help more than you want this book to make a profit for you, and I admire what you said and I appreciate that.

NB: Right.

WG: I want to tell you that I think this interview is going to be extremely meaningful to a lot of people, and some people might find some of this interaction controversial for them, and that’s okay with me. I’m okay with that. Some people might be like, “well, that’s a little different than some of the other stuff that’s going on with this journal,” and that’s okay with me, too, because you’re, you know, negotiating your own experience, the uniqueness of your experience, and you are in solidarity with other people, and you’re describing what that feels like it, with your example of the UK, which of course includes a bunch of folks from many backgrounds and with multiple identities. A global phenomenon, fibro. Is there anything else that you would like to add?

NB: No, I pretty much said everything in my heart.

WG: Well, I respect and appreciate and thank you for your heartfelt words.

NB: Thank you.

WG: Thank you, Nyesha.

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About Nyesha Brooks

Nyesha Brooks, also known as Queen Alika, is a Philadelphia-based, self-published author. Queen Alika (which means “Most Beautiful in Africa”) decided three years ago to channel her frustration through the art of storytelling. She writes short stories to bring awareness about the disability communities. Queen Alika wants to make a difference in all communities by addressing real-life issues that our youth face, to eliminate stressors. When it comes to counseling others, personal experiences are truly effective–they can inspire, motivate, and give hope. Queen Alika’s writing has become a way for her to take action instead of remaining silent.

About Diane R. Wiener

Diane R. Wiener became Editor-in-Chief of Wordgathering in January 2020. Diane is the author of the full-length poetry collection, The Golem Verses (Nine Mile Press, 2018), the poetry chapbook, Flashes & Specks (Finishing Line Press, 2021), and the forthcoming poetry chapbook, The Golem Returns (swallow::tale press, 2022). Her poems also appear in Nine Mile Magazine, Wordgathering, Tammy, Queerly, The South Carolina ReviewWelcome to the Resistance: Poetry as ProtestDiagrams Sketched on the Wind, Jason’s Connection, the Kalonopia Collective’s 2021 Disability Pride Anthology, and elsewhere. Diane’s creative nonfiction appears in Stone CanoeMollyhouse, The Abstract Elephant Magazine, and Pop the Culture Pill. Her flash fiction appears in Ordinary Madness; short fiction is published in A Coup of Owls. After serving as Guest Editor for Nine Mile Literary Magazine’s Fall 2019 Special Double Issue on Neurodivergent, Disability, Deaf, Mad, and Crip poetics, Diane was appointed as the magazine’s Assistant Editor. The Founding Director of the Syracuse University Disability Cultural Center (2011-2018), Diane now serves as a Research Professor and as the Associate Director of Interdisciplinary Programs and Outreach at the Burton Blatt Institute (Syracuse University College of Law); she also teaches in the Renée Crown University Honors program. Diane has published widely on disability, pedagogy, and empowerment, among other subjects. She is a proud Neuroqueer, Mad, Crip, Gender Nonconforming, Ashkenazic Jewish Hylozoist Nerd (etc.). Diane blogged for the Huffington Post between May 2016 and January 2018. You can visit Diane online at: