When I Talk About the Pandemic, I am Ghosted

Check out this incredibly powerful blog by EASM member and Hopkins School of Public Health student, Gloria Sun, about pandemic denial. Thank you for sharing, Gloria!

Sun Requiem

I’ve been posting about the dangers of long covid, and the fact that the pandemic continues to disable and kill thousands of people each day.

People get awkward about it. They leave me on read, they stop engaging, and I feel like I am speaking to the void.

I know it makes people uncomfortable, because we’re in the era of the great forgetting. We want to forget that the world ever saw covid disrupt our lives, and the trauma and uncertainty during those “unprecedented times.”

It might be easier to imagine that we are safe and can go about our lives without masks and without caution than to accept the opposite. Yet, even common sense tells us that ignoring something doesn’t make it go away.

I know it makes people uncomfortable, because we’re in the era of the great forgetting. Yet, even common sense tells us that ignoring something doesn’t…

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An interview with Dr. González Fernández, MD, PhD, Department of Physical Medicine and Rehabilitation at Johns Hopkins School of Medicine

The following is a transcription of an interview between Lisa Young of Equal Access in Science and Medicine and Dr. Marlís González Fernández of Johns Hopkins Medicine

LY: You joined the [Physical Medicine & Rehabilitation] Department as a faculty member in 2004 and have been here for 18 years. Why did you choose Johns Hopkins PM&R in the first place? 

MG: [I felt like] research would allow me to reach many more patients by answering important questions that would improve their care versus using the knowledge we already have to serve them. I felt like I wanted to be a part of both sides of that process. Thus, I decided to come to Hopkins for research training and have remained in the faculty since.  

LY: Do you define yourself as a scientist-clinician or as a clinician-scientist?  

MG: Clinician scientist, in that order.  

LY: Why did you choose to work with patients with swallowing disorders, amputations, and spasticity? 

MG: What attracted me to physiatry initially was its primary focus on the quality of life and ameliorating the effects of disease on people’s daily lives… Swallowing disorders, in particular, are seldom paid much attention to. And it’s something that we tend to take for granted. We swallow 500-700 times a day but don’t give it any thought unless there is a problem. Swallowing problems are not only crucial for nutrition and hydration but also for day-to-day social interactions. Being unable to swallow as usual has a significant impact on an individual’s quality of life… We don’t invite friends to talk; we invite friends for coffee or invite people to our home to have a meal… The fact is that there’s this correlation between how we interact with each other, quality of life, and food and drink, which is almost universal. That’s why I thought it was essential to start looking at that from that lens. I wanted to focus on swallowing to get people back to eating, to family functions, to the coffee shop meeting with an old friend, and to be able to give a toast at their children’s wedding. 

The same applies to my focus on rehabilitation after limb loss. People come to us at one of the lowest points in their life. They’re discouraged. They think that life is never going to be the same. They feel they will never be able to do the things they did before. Though it’s true that life will be different, that does not mean that they won’t return to a meaningful way of life. Options exist like using a device like a prosthesis or us as clinicians helping people go through that process, acknowledge their loss, and help them grieve it. And at the same time, helping them move forward and get their life back is essential. Again, at the core, whether it’s dysphagia, amputee rehabilitation, or any other rehab problem, for that matter, the goal is to ameliorate the effects of disease on life and reduce disability. You can change the physical problem, and where you can change how that physical problem affects their participation in society. That’s important because we have many things we can do there, even if whatever happened to them, from a medical standpoint, cannot be fixed at this point in our history. That is what is most rewarding of all the work we do. 

LY: Would you describe your work as not only reducing disability but also teaching patients how to live with it and changing how they interact with society? 

MG: There’s a typical definition of disability. But suppose you go back to the meaning of it. In that case, so people do not have an ability, you can argue that there are people, for example, out there who have lost a limb or have an impairment, and their limb will never return. Still, they don’t have a disability because there’s no thing or activity that they want to do that they can’t do. In that sense, it doesn’t matter what your impairment is; it doesn’t matter if you don’t have a limb; it doesn’t matter if you have a spinal cord injury if you can’t walk; what tends to matter at that point more is how can we help you do what you need to do and eliminate that lack of ability? It’s a bit of a broader definition of how we use disability in typical terms.  

LY: What were some challenges you faced in developing your understanding of how to care for patients with amputations, swallowing disorders, and spasticity? 

MG: That’s the toughest question, not because of a lack of challenges. I would say the most important lesson I learned when caring for people with disabilities is that you first need to understand their perspective and where they’re coming from… Medicine, in general, has changed because we are not physicians who just tell people what to do– we need to make sure that we develop a partnership… It is really important to learn to work with patients with disabilities, understand their personal goals, and facilitate their recovery… and they, especially in rehab, are the ones that have to do the tough work. I always tell patients that rehab never goes as fast as we want, and it never feels like it’s going quite as far as we want. As long as we’re going in the right direction, that’s all that matters. Are we moving towards our achieving the goals that we set up at the beginning? And are those goals changing and improving and growing? The biggest challenge in rehab, in general, is that the timeframes are never good enough for anyone involved, especially for the patients because they’re the ones living with whatever physical challenge they have. Keeping people encouraged is vital as ensuring they see the goal at the end, even when the progress is slower than anyone would want.  

My advice to them is: do the best work you can but don’t be discouraged if the amount of work you’re putting in is not translating into what you think is the end game. The game might not match the effort you have to put in, which is okay. It’s tough to see the change when you’re at it all the time. Sometimes it’s easier for me than for patients to see the improvement because I don’t see them every day. I saw them two months ago, and they come in saying this prosthesis is hard to put on or it makes their limb perspire. We work on getting it to fit more comfortably. We work on controlling perspiration and all that, but at the end, I always like to stop and say, “But when you came here the first time, you were in a wheelchair; you walked in the door today,” just to help them refocus that they don’t need to use a wheelchair for mobility, they can use the prosthesis. It’s sometimes just important to stop for a minute and help people refocus and take a broader view. And say, “Yes, the challenges you’re facing today are important, but if you take a step back, you can see that your challenges have changed because you’re better. You have problems because the prosthesis is not quite right. Because you’re actually using it, you’re actually walking on it.” Those are important things to facilitate so people can feel encouraged by their progress. Because, as I said, I’m not doing the hard work. 

LY: And has that been personally challenging for you? 

MG: Yeah, in general, like learning to navigate PM&R, I think this field was right for me. Some of these things feel natural to do. I think, over time, getting a better grasp on how people on the other side feel is the most challenging. Because I would never be able to tell a patient, I know how you feel because I’ve never been in their shoes. But that process of trying to get as close as you can to where they are, and be able to understand to a certain level, why they are, where they are, and how they feel is important, and it’s something that you hone with time. You would hope that you wouldn’t be horrible at it to start. But honing that ability is critical, especially when serving people who need long-term rehabilitation.  

LY: Is there a PM&R initiative or intervention that you are excited about but hasn’t yet gained nationwide recognition?  

MG: I think this field is always exciting. But I’m most excited about a couple of things. 

…I hope that in the near future we can increase the number of patients with upper limb amputations that we can serve. For rehabilitation after limb loss, we’ve always felt that patients are served best when they can get access to all the treatments available… I’m very excited about our programs growing and offering people who’ve lost a limb pretty much everything that’s out there and offering all that in one place so they can have surgical interventions, traditional interventions, and everything in between… And being able to tailor the intervention to their specific needs and helping them reach their full potential is a very difficult process to manage and can be overwhelming for patients. When we have everything in one place, we can facilitate that progress.

From a research standpoint, I’m excited about potentially restarting some of the research that had stopped due to COVID. Using CT scans for swallowing hasn’t been done much, and hardly ever in the U.S., because for studying swallowing, you need a special CT scanner that will tilt and has a unique chair so that person can sit instead of lying down because we don’t eat laying down… I’m very excited about potentially starting now that we have the infrastructure and the expertise of some colleagues in Japan. I’m very happy about being able to reopen the lab and be able to do some of that work here. 

LY: Can you talk a bit about the customizability of prosthetics? 

MG:…Especially hand prostheses, the more realistic they look, the less they can do from a functional standpoint. So we’re always trying to balance that… That might be important for one patient. For others, they’d rather have something that perhaps doesn’t look as much like a hand but helps them do more activities and is an important tool in their day-to-day life. And again, that’s different for every person. That’s why focusing on and understanding their personal goals is important at the beginning so we can do what’s best for them.  

One of the things that I’ve learned from working with people with disabilities is that this is a really amazing group of people. Some of them are way stronger than I would ever be. They’re facing some physical challenges that they didn’t choose. It just happened. And they take it all with grace, move on, keep living life, and recognize that strength is important. And recognizing that people want to be seen for who they are and not solely for their disability, but also not trying to hide the disability like it doesn’t exist and trying to help people find that measured approach. Well, the fact that they lost a limb is the fact that it is what it is. It doesn’t need to be hidden, but it doesn’t need to be the primary focus because they’re a person first, and they’re a person that has all sorts of dimensions. That’s why I always turn to the patient first because we need to understand how the disability has become part of their life. How it is real for them, but at the same time, it’s not the totality of who they are. Where it is meaningful to that particular person is important, and it’s the biggest challenge for society.

I think as we try to fit people into specific categories, and when you don’t fit the categories in society, then things start falling apart, and people feel uncomfortable. People will say, “Well, I have a disability; my leg is not growing back,” and I’m like, “Okay, but we can see what things you want to do.” Then we can eliminate your lack of ability to perform activities. And to be quite honest, I’ve learned a lot from the patients themselves. I’ve learned a lot from their families and how they’ve, especially families who have and who, for example, have had a child who has a disability, especially a disability from birth. They have navigated this world that is not kind to children with physical or cognitive issues, and how they’ve managed to work with the child as it grows. And I’ve seen them as adults. And you see how people are just amazing and pushing them enough that they realize their full potential but understand where their limitations are and trying to help them navigate those disabilities. You can see when people have that sense of what is important, and how they can foster the best of what they are regardless of what that is. You see incredible things happen.  

It’s all about finding the balance: understanding the medical versus the rehab world, understanding what is possible in terms of abilities, and trying to push the envelope versus knowing when to stop. 

LY: With all your years of training behind you, do you have any advice for graduate and medical students as they work with individuals with disabilities, physical, neurological, and invisible? 

MG: This is an important question, and I think the most important thing we can do is not assume anything about how happy, fulfilled, and engaged your patients are in life. Again, you can make many assumptions based on what you read about someone’s medical issues and realize that there’s a great disparity between what you think you know from a medical standpoint and who that patient is and what’s important to them. So do not have preconceptions when talking with someone, regardless of how long you’ve worked with people with a particular disability. I’ve worked with people with amputations for at least ten years and through residency training, but everyone is different. And how happy or not people are with how things are going– you just can’t assume anything without explicitly seeking that information for each individual. And sometimes you’re surprised about what people are doing and want to do well. And sometimes we’re cheerleaders; sometimes we’re encouraging them. Sometimes we have the tough job of telling them that perhaps we need to right-size those goals for the now and then help those grow as we move along. Oh, those are hard because we want to support people as far as they can go. But we don’t want too lofty goals to impede progress now. I always say let’s call that our ultimate goal. Let’s find smaller goals we can reach in the process and move forward.  

…So I don’t make assumptions at all at this point on anything a patient may or may not want until they tell me what they want so we can be good partners and understand what the goal post is. Asking what their goals and interests are is crucial to be able to serve them well. It is amazing how resilient and creative my patients are and how they rise above their disabilities and challenges to live meaningful lives.  

For Student Founders with Disabilities, Entrepreneurship is Personal

This article was originally published on Johns Hopkins Technology Ventures website at https://ventures.jhu.edu/news/student-founders-disabilities/

The following was written by Erica Avery, FastForward U’s communications intern. July is Disability Pride Month.

While many devices designed by biomedical engineers have passed through FastForward U’s doors to treat illnesses and physical disabilities, some founders are approaching supporting disability from a different angle — personal experience.

Rebecca Rosenberg founded ReBokeh, winner of the Spring 2022 Fuel Demo Day and the first student venture focused on providing accommodations for the sensory disability community, because she needed those accommodations herself.

ReBokeh increases accessibility for those with moderate visual impairment, including Rosenberg, who has a form of albinism. ReBokeh’s recently launched app creates customizable video filters specific to the user’s condition and needs to enhance their existing vision.

“It’s more than just being a technology for independence, it’s about being seen,” says Rosenberg, a graduate student in the Center for Biomedical Innovation and Design. “It’s about going so long through our lives feeling unseen. Having something out there that has been designed specifically for a community of people who have, to that point, really not had anything is the thing that gets me up in the morning.”

Zandy Wong, a rising junior in public health studies, was part of the student startup Cognitivae, which is developing an app that makes mental health therapy more accessible. Wong, who has hearing loss, since founded the NextGen Accessibility Initiative, a youth-led, digital accessibility advocacy volunteer organization that partners with Gen Z organizations to help them identify and fix accessibility errors in their educational content. Her work has been recognized by the Clinton Foundation and has helped over 200,000 youth across 119 countries have accessible educational content.

“The biggest strength that comes with being an entrepreneur with a disability is that we’re expert advocates and understand how to communicate and compromise with people to keep advancing our ventures forward because we’ve been advocating our entire lives to just fit into environments,” Wong says. “Many disabled entrepreneurs I’ve met are also addressing issues that hit close to home for them, so it is often a form of giving back.”

The goal of both women is to promote independence and dignity among the disabled by helping educate and empower their communities to realize they have the power to make the world more accessible. Rosenberg and Wong embody a common expression in the disability community: “Nothing about us, without us.”

“We’re not trying to fix anybody’s impairment. What we’re trying to do is give them the tools they need to succeed in a different way,” Rosenberg says. “For those of us in this moderate impairment range, we have decent functional vision, and we want the dignity of being able to use it. …I have always truly felt like the best thing we can possibly do for the disability community is make sure that they know how to help themselves.”

Josh Ambrose, director of student ventures at FastForward U, said the accelerator program is proud to work alongside and learn from founders in the disability community.

“We celebrate that more and more awareness is coming to the incredibly valuable work from founders who face a range of challenges and develop creative solutions that make the world a better place,” he says. “Their ingenuity and ethic of care has the potential to make a better world for both individuals and for all of society.”

Visually impaired since birth, Rosenberg says she became comfortable standing out at a very young age, something that translated to being an entrepreneur.

“For someone with a vision impairment, taking a step down a staircase is a risk. So I learned very, very early to be comfortable taking risks,” Rosenberg says. “Without a healthy dose of risk, you can’t be a successful entrepreneur. You figure out very early on how to make things happen for yourself and I think that is why there are so many people with disabilities that are able to do incredible things. There’s a grit, and a perseverance, and a level of tenacity that is present that I don’t think I would have otherwise.”

According to the U.S. Bureau of Labor Statistics, persons with disabilities had a higher rate of self-employment (9.6%) than persons without disabilities (6.4%) in 2021. FastForward U provided a space for Rosenberg to explore her passion and succeed in bringing her dream for ReBokeh to life, she says.

Rosenberg often receives feedback that reflects how common and relatable accessibility needs are for many people and their loved ones, something that inspires her work with ReBokeh.

“Almost every time I go out and share this story, whether it’s just focused on my personal experience or I’m just pitching ReBokeh, I always have at least one person who says, ‘I’ve had this same experience’ or ‘My daughter, or my brother, or my cousin has a vision impairment or some other type of disability,’” Rosenberg says. “It really has reinforced that what we’re doing matters and is important to people and we’re solving a problem they truly do have, and it feels so good to be able to do that for this group that has so largely been forgotten.”

Check out the story Hopkins HUB published about Emily Ladau’s fireside chat EASM was a part of!

Two of EASM’s members, Erica Avery and Emily Xiao, were student panelists during Emily Ladau’s “Demystifying Disability” fireside chat! Read the HUB article Hopkins themselves published about the event! We were proud to help plan and host this event and we’re excited it generated so much attention for Disability Pride Month!

A flyer for a fireside chat with Emily Ladau with an image of her holding her book "Demystifying Disability."
A flyer for a fireside chat with Emily Ladau with an image of her holding her book “Demystifying Disability.”

Ways to get involved during Disability Pride Month at Johns Hopkins

Show your solidarity with Disability Pride buttons found across campus and Daily Grind will be give a 10% discount on coffee at the MRB/Ross and Armstong locations. Taharka Bros is also giving a 10% discount at all 3 Baltimore locations.

Participate in the #DisabilityPride2022 Twitter campaign.

Register for a Fireside Chat with Emily Ladau July 19, 12-1:30pm.

Learn more about local disability adaptive sports programs with Kennedy Krieger.

Disability Pride Month is here! Get ready for a Fireside Chat with author of “Demystifying Disability”, Emily Ladau

This month is Disability Pride Month and our student-run EASM Committee here at Johns Hopkins in collaboration with Hopkins Student Disability Services will be hosting a Fireside chat with author and disability advocate Emily Ladau!

Here is more information about the event
Demystifying Disability: A Fireside Chat with Emily Ladau

Date: July 19 from 12:00 noon to 1:30 pm
Virtual format: Registration link for Demystifying Disability

Join us for a panel conversation with Emily in celebration of Disability Pride Month including our EASM members, Emily Xiao and Erica Avery. ASL and CART will be provided. The first 100 registrants will be eligible to receive a free print or audio copy of “Demystifying Disability.”

Emily Ladau posing with her book "Demystifying Disability" with information for the Fireside Chat
Emily Ladau posing with her book “Demystifying Disability” with information for the Fireside Chat

Attention Hopkins Community! Please vote for EASM’s Diversity Innovation Grant for an Alumni Network Here!

Project Description :

2% of students in the School of Medicine (SOM) register with Student Disability Services, yet 25% of graduate students in the SOM who completed a recent Graduate Student Association survey identify as having a disability, mental health disorder, or chronic illness. Students with disabilities may be inherently less able to advocate for themselves than other types of underrepresented groups due to the nature of their disability. They may experience tremendous fatigue or face a power imbalance when superiors finance their accommodations. These students also juggle extra obligations, like scheduling doctor’s appointments and managing health insurance. Additionally, students with disabilities may fear disclosure because of concerns about judgment, bias, discrimination, future career prospects, licensing, clinical privileges, and skewed perception of ability. As a result, some students with disabilities suffer in silence instead of seeking help.

Lack of disclosure places Hopkins in a difficult position – students can’t be forced to reveal their conditions, but they also can’t be offered support if they don’t ask for help. Disability is infrequently included in diversity and inclusion initiatives, and students with disabilities may feel like they are invisible. We believe that Hopkins must prioritize creating an environment that welcomes people of all identities and abilities and celebrates disability as a valuable type of diversity. This may help students feel safe to disclose their conditions.

We propose the establishment of the Equal Access in Science and Medicine Student-Alumni Network to address these inequities and provide resources and support for students with disabilities. The depth and breadth of expertises and the diversity of perspectives among Hopkins students and alumni makes us uniquely poised to establish innovative and interdisciplinary approaches that could reduce inequities for persons with disabilities both within and outside of the University.

In alignment with the principles outlined in the Roadmap for Diversity, Equity, and Inclusion, the Equal Access in Science and Medicine Student-Alumni Network will create opportunities for robust engagement between individuals with diverse viewpoints and promote deep consideration of challenges faced by scientists and medical professionals with disabilities. We will first work with Student Disability Services and the Johns Hopkins Disability Health Research Center to identify and contact Hopkins students and alumni with disabilities from the SOM, School of Public Health (SPH) and School of Nursing (SON).

Alumni and students with disabilities will be invited to:

Join a Slack channel that will serve as a hub for students and alumni interactions: We will establish a Slack channel to connect students and alumni and enable the exchange of information and ideas about ongoing disability initiatives and research. We will also promote sharing of perspectives on disability from across Johns Hopkins and the biomedical workforce.

Complete a survey that will be used to match students with an alumni mentor: We will send a survey to students and alumni with disabilities that will be used to match mentor-mentee pairs based on career interest and disability characteristics. Alumni mentors and student mentees will be introduced via email with suggested starting points for conversation. Students and alumni mentors will be expected to maintain the relationship independently, however, if a student is not satisfied with their mentor, we will work with them to identify a new, more suitable one.

Participate in two alumni career panels: We will feature alumni with diverse career and disability experiences from the SOM, SPH, and SON in two, 1.5 hour alumni career panels. These events will focus on the disability-related experiences of Hopkins alumni in their careers, as well as strategies to remove barriers to access and promote inclusion of individuals with disabilities in science and medicine. We will spend the first hour of the panel asking both prepared questions and questions that we invite students to submit in advance. Specific points of discussion will include each panelist’s unique career experience with disclosure, accommodations, disability-related challenges, and self-advocacy. The last 30 minutes of the panels will focus on discussions between alumni panelists and student attendees. Students will have the opportunity to ask panel members follow-up questions and share their own experiences.

This network will advance four priority areas for funding:

Faculty diversity and success: Many students with disabilities may consider careers in academia and pursue employment at Johns Hopkins. Furthermore, alumni with disabilities may be faculty members. We hope that the Student-Alumni Network will promote help-seeking behavior among students and faculty and encourage disclosure, which will generate more accurate reports of disability frequency, improve culturally competent care of patients with disabilities, and improve inclusion of faculty with disabilities in decision-making spaces.

Student success: The Student-Alumni Network will provide successful role models to students with disabilities, who may feel isolated or alone in navigating graduate or medical school with a disability. Students will be provided with opportunities to network and form relationships with alumni and other students with disabilities, which may lead to future career opportunities. Additionally, these discourses and events will help reduce stigma around disability and promote students with disabilities as a valuable component of the Hopkins community.

Alumni engagement: Alumni will engage with students through discourse in the Slack channel, one-on-one mentorship, and participation in the career panels. This will provide multiple opportunities for alumni to share their perspectives, form relationships with students, and promote student and alumni success by learning from each other’s experiences.

Training and professional development: Students will hear perspectives and receive mentorship from alumni with diverse career interests and disabilities. This will provide students with information about navigating disclosure, accomodations, and other disability-related challenges when entering the workforce. Additionally, students will be more knowledgeable about resources available to them and strategies that can be utilized to self-advocate throughout their careers.

We are excited to see how this network will unite students and alumni to take on complex issues related to disability, disclosure, and removing institutional barriers to access for scientists and medical professionals with these conditions.

Using The Matrix to explain my chronic pain

Characters from The Matrix franchise dressed in all black and sunglasses

“What is real? How do you define real? If you’re talking about what you feel, taste, smell, or see, then real is simply electrical signals interpreted by your brain.”

-Morpheus, The Matrix

In rewatching the original Matrix trilogy in preparation for the new movie, I was struck by the allegory the first movie made for the experience of disability. The premise of the franchise is that humanity is unknowingly trapped inside a simulated reality created by machines, like being plugged into a computer. I first realized this allegory when the main character Neo, meets with his mentor Morpheus for the first time.

Neo, in the first 45 minutes of the first Matrix movie, has 80 lines, 44 of which are questions. This is exactly what it feels like with the onset of a disability. Your whole life is changed, everything you thought you once knew about your experience of your body and what’s happening to you isn’t true anymore, and you’re confused and overwhelmed, exposed to a whole new reality that you didn’t know could exist.

When Neo meets Morpheus, dumbfounded by the sequence of events unfolding, he asks, “Is this real?” and Morepheus responds, “What is real? How do you define real? If you’re talking about what you feel, taste, smell, or see, then real is simply electrical signals interpreted by your brain.”

“Thank you!” I shouted at the screen. It was a lightbulb moment. Perhaps the biggest stigma and misconception I hear about having an invisible illness like fibromyalgia syndrome is that it’s “not real” or “all in your head.” Not only is this objectively false in addition to invalidating and ableist, but I found Morpheus’s words to be a thought-provoking response– what is real anyway? You might not be able to look at me and see my struggle, but my neurons are sure sending signals that my brain is interpreting as all different kinds of pain and fatigue among many other symptoms, so doesn’t that make it real no matter what? I’m sure feeling it in my body, so that should be enough for others to know that it’s real for me, even if it’s not written all over me. I don’t use a cane, have rashes, have congenital defects, etc but that doesn’t mean there isn’t a pathology going on underneath.

Many people see me having an active Raynaud’s episode, where my fingers go blue or white, and panic about how unsettling it is and if I need medical help when truthfully, it’s superficial, and I go in and out of having Raynaud’s all day long sometimes. It’s annoying at best because the extent of my worst fibromyalgia symptoms is probably just so much worse that my tolerance for things like Raynaud’s is high. What I need people to really be concerned about, my neuropathy, muscular dysfunction, joint problems, cognitive and sleep problems, are not so obvious.

Chronic pain and fatigue seem to be the most widely misunderstood part about this disease. But why? Acute pain and tiredness are something everyone feels in life so they assume they must have some authority on diseases like mine. That couldn’t be farther from the truth. In general, chronic pain and fatigue is not an experience people can understand if they don’t have it. Moreover, in a disease where 90% of patients are female and we already know women’s pain is taken less seriously– the misogyny adds to the stigma. It is literally physically impossible for others to ever experience the depth of what this pain and fatigue feels like unless they have my pathology– unless their neurons are firing improperly like mine.

Before being diagnosed, I thought fibromyalgia was aches and pains here and there, not unyielding, constant severe neuropathic nociception in my hips, in my arms, in my back, in my neck, in my shoulders, in my jaw, in my bladder, in my GI tract, in my esophagus, in my scalp– you forget how many muscles you have that can experience dysfunction until you need them and they’re not working right. I haven’t lived a day without nerve pain since 2012. After many frustrating conversations with people who lack empathy, I learned they don’t understand because it’s not for them to understand. They never will and they never can, unless it happens to them.

Many times over the course of this chronic illness I’ve asked myself things like “Am I crazy?” or “Am I making this up?” just like Neo. All these moments I’ve doubted my experience was the result of conditioning from endless gaslighting by society due to ableism– the same way The Matrix lies to people and presents a false reality. We don’t want to seem like the person who’s always complaining or blame everything on our illness. It’s confusing for even me, a fibromyalgia veteran of 10 years, sometimes to tease apart what’s happening to me in the moment and why. But the truth is, a chronic illness is called chronic for a reason– it never goes away, never rests, and doesn’t care what plans you have, work deadlines are coming up, or what holiday it is. I am dealing with it 24/7/365.

In the franchise, they say that whatever happens to you in the Matrix, your body makes real. People diminish fibromyalgia as “all in your head” because “you’re just depressed” and that’s causing fibromyalgia symptoms. Sure, my anxiety or depression worsens my experience of my chronic pain and fatigue, but that doesn’t make it any less valid– in fact, just like the Matrix, my body is making it “real”. I’d also be more concerned that there are so many triggers for symptoms all the way down to stress and mood instead of using that as a reason to dismiss it.

So the next time you doubt your own experience of your body, a doctor questions how serious your pain is (especially as a woman), or your symptoms go ignored, forgotten, or gaslit by coworkers and family members, remember this lesson from Morpheus: what your brain is telling you you’re feeling, is the only thing that matters, and it should be taken seriously.

We held a disability-themed Wikipedia Edit-a-thon on International Day of People with Disabilities, Dec. 3, 2021

A flyer for the Wikipedia Edit-a-thon event for disabled scientists that took place Dec. 3, 2021 held to increase inclusion and representation of people with disabilities in science and medicine

This past Dec. 3, 2021 EASM held its first annual Wikipedia Edit-a-thon in conjunction with 500 Women Scientists and sponsored by the Disability Health Research Center. Read more about it HERE in the Hopkins News-Letter and read some quote excerpts below about the event (and be sure to be on the lookout for the return of this event next year).

“The thing that a lot of people with disabilities generally in academia struggle with is having a sense of community. Almost everyone that I talk to, that’s like their number one complaint, and I think that this [event] is something where we can show all of the people that exist in our field who we can feel connected to and have that sense of belonging that everyone feels is missing right now.” -Erica Avery, co-organizer

“Working together, creating these pages, doing these action-oriented things to help increase representation of disabled scientists and clinicians in STEM — I want to see that bring our community closer together.” -Nicole Pannullo, co-organizer

“The edit-a-thon showing us that there are role models in the field and bringing that into Hopkins as a workshop may make more staff and faculty willing to be more communicative about their own struggles and their own disability.” -Nicole Vigiano, co-organizer.

“This [event] is a really great way for us to celebrate people with disabilities and to create these Wikipedias to show that there are a lot of successful scientists and clinicians out there with disabilities and that these people can serve as positive role models and inspirations for people with disabilities who may not be sure if they belong in science or medicine when they do.” -Nicole Pannullo, co-organizer.

“I hope that when a little kid who has some kind of disability and their parent google ‘disabilities’ or ‘someone in STEM with disabilities,’ we can make something pop up.” -Nicole Vigiano, co-organizer

“We want to normalize having a disability in the workforce and really reiterate that we’re everywhere; we’re all around you and you just don’t know it. So when you go to read that book or look up this famous person, that you can see that in addition to having all of the success they’ve had, they also have a disability,” she said. “Hopefully the people participating and writing can take solace in knowing that they are providing that for a greater community than just ourselves.”-Erica Avery, co-organizer

Erica Avery wins National Disability Employment Awareness Month Achiever’s Award!

Click Here to read about Erica’s award announcement

Erica Avery maintains a leadership position in Equal Access in Science and Medicine Committee, an organization dedicated to students with disabilities at the schools on the
East Baltimore campus. The group has held book clubs, documentary watch parties, social events, a celebration for the 30th Anniversary of the Americans with Disabilities Act, and seminar series given by disabled researchers. In addition, they were recently awarded a “JH Needs U” COVID-19 Well-Being Grant from University Health Services Wellness, allowing them to hold a two-day panel discussion event with a variety of students who are disabled to discuss with the Johns Hopkins community how their education, research, and everyday lives have been impacted by COVID-19. Subsequently, Erica was asked by the dean of biomedical graduate education to present the summary and conclusions from this event to the masters/Ph.D. committee to discuss improvements in accessibility and accommodations for students. The committee is established under the Graduate Student Association, and as such Erica is responsible for working closely with the association, speaking to the student community at meetings and listening to questions and concerns. She works closely in collaboration with disability coordinators and Homewood’s Students Disability Justice Club to make improvements to student disability services as well as enriching student life according to the Diversity Innovation Grant EASM.

As an advocate for the disability community, Erica has published essays and op-eds in publications such as ASBMB Today and Scientific American discussing her chronic illness and the needs of the community to spread awareness and reduce stigma. These publications included discussions on the lack of health care options and research into
misunderstood chronic illnesses and what living with a chronic illness is really like. Erica also wrote two essays for the American Chemical Society about focusing on improving
mental health struggles due to the pandemic. Additionally, she’s written for Johns Hopkins Technology ventures to highlight Johns Hopkins students and physicians working on health care and medical tech ventures such as devices for portable oxygen, dialysis, asthma, mental health apps, etc. Erica works closely on projects in collaboration with Johns Hopkins Disability Health Research Center, a center established to address health care disparities, representation in academia, and inclusion in medical and public health research. As one of the main student leaders in the disability community, Erica has often advocated for the health care needs of students to the university administration in meetings and listening sessions. She’s expressed the
feedback from many students that their disability has made them reconsider if they can financially afford graduate education or balance the unreasonable demands and expectations of their degree and not exacerbate their health struggles.