Saturday, September 11, 2021

My Letter to Disabled Folks for Suicide Prevention Month

 Content Warning: Mention of suicide, ableism, mental health conditions

September is Suicide Prevention Month. Mental health is of particular concern for disabled people, who face additional obstacles like systemic ableism, increased risk of poverty and isolation, and higher rates of chronic pain. Because of these factors, people with disabilities also struggle to access mental health services as easily as their peers without disabilities. Even with a bright, vibrant disabled community, even on the days I feel proudest to live in my disabled body, navigating the world with a disability is hard. I’ve learned over many years of advocacy that disability pride is not a perfect science. You can sincerely find joy in this life, you can refuse to have your disabled being marked inferior by the world, and still, some days will feel impossible.


In 2018, as part of a project inspired by the LiveOn Movement, I wrote a letter to my fellow disabled folks struggling with their mental health. Today, in 2021, I’m sitting down to write to them again because I have learned so much in the three years that have passed. I hope you will read along and remember how much the world needs you, exactly as you are.


Dear Disabled Friend Who Feels Depressed, Anxious, and Hopeless:


I have been in the place where you are. It’s a scary feeling to be there and you probably feel so alone. It’s not easy to be disabled, especially in a world that constantly tells us we don’t fit anywhere. Non-disabled people easily underestimate the toll of discrimination, of fighting for basic needs, of searching for a competent personal care worker so you can do something as simple as change your clothes. 


Some days, it all feels like it will crush you. Disability pride, on those days, feels like a faraway concept. Like maybe it can only belong to the lucky ones. When I developed a new spinal condition in the fall of 2018 that left me with debilitating nerve pain, it was a major gut check: could I be proud in this body, the one I thought I knew, that now felt like it was burning me from the inside out? How many more gloved hands and clinical gazes could I bear on my skin, especially when most of those doctors implied that the chronic pain ruling my life wasn’t real? 


Sure, I’d spent my whole adult life rallying for pride and acceptance, but on those mornings that I welled up with tears from nerve pain caused by my once innocuous pajama pants, I felt like a fraud.


It grew harder and harder not to compare my life to what I saw on Instagram, where former classmates posted photos of marriages and babies, while I tested the fabric on washcloths to see which kind wouldn’t feel like I’d poured acid on my skin. 


Amid all this, when it felt like the whole world should be frozen and weeping with me, the pull of regular life still yanked at me. Phone calls, training home care aides about how to shower me, paperwork, paperwork, what to eat for breakfast. One of the hardest parts of being disabled, chronically ill, or some combination thereof is the loneliness. 


Oh, the loneliness. 


The feeling that you are a pit stop that other people will make only when they have some time out from their real social lives. 


Several surgeries and many months of reflection later, I know that anxiety and depression are liars and thieves. I still struggle with loneliness from time to time and I know the stress of ableism will never fully dissipate. But I am here. That in itself is an accomplishment, although a society obsessed with productivity will try to tell you otherwise. 


If you are reading this, you are still here too, and my god, I feel honored to be with you. I don’t care if all of your quarantine plants died, if you didn’t learn a new language this year, or if your sourdough bread attempt was a dumpster fire. The grades you earned in school, the job you have or don’t have… all of those things are so small. One of the greatest lessons I’ve learned in the time since my last letter is this: if we stopped celebrating people for what they do, and instead celebrated who they are, the whole world would feel so much healing.


My dear disabled friend, I’ve loved you from the beginning. Even if we never meet, my love for you remains. 


Because despite our varied lives, you share with me a sense of knowing. Knowing what it feels like to be the one who stands out in every room. Knowing the stares. The questions. The bureaucratic chokehold of systems that are supposed to help us but hold us back instead. 


With that shared knowing is a sacred kinship between you and me.


If you don’t feel proud in every moment, you are not a fraud. You are a human being who understands that joy and grief live together. 


You are a person who matters… and I’m proud of you…even in the moments you don’t feel proud of yourself. 












Monday, August 16, 2021

To the Disabled Students Heading Back to School, I See You

 Today I came across my 7th grade ID photo, in which I am a tiny 12-year-old girl in an aqua tank top, smiling and trying to convince myself that junior high seems like a good idea. The anxiety I felt when the picture was taken is still so real to me that it’s hard to believe 16 years have gone by. I occasionally ask myself why I saved the long-expired ID card, and I still can’t settle upon an answer, considering that it is a relic of one of the hardest, most awkward times of my life. The best answer I can come up with is that perhaps I need to see how far I’ve come. To have evidence that I really did make it.


As the back-to-school Walmart commercials flash across the television and first day of school photos are posted, it’s so easy to be transported back to what those first days felt like. As a disabled student in a school system still trying to catch up decades after IDEA, the first day of school was often akin to being dropped in the jungle. Among the color-coded binders and sticky, creaky lockers hung heavier questions: 


Will the accessible desks be in place? 


Will the elevator work? 


Will my wheelchair fit under any of the lunch tables? 


Will the person who helps me use the bathroom treat me like a human being?


Inevitably, the answer to one of these questions, or many of them, was a resounding “no.” 


Navigating an educational system that frequently leaves disabled kids behind made me the advocate I am today, and I will always be proud of that. 


But a piece of my heart will always be broken knowing that disabled kids should not be burdened with fighting tooth and nail for basic accommodations. 


The little girl in the ID picture couldn’t have a carefree first day of junior high because she was busy fighting dozens of little battles: ill-fitting desks, heavy doors, inaccessible lab tables, the epic search for a competent note taker. I know my story is not unique and for millions of disabled students, the same anxieties that haunted me in my school days persist. 


When I watch those Walmart commercials, I want to shout at the TV that for students with bodyminds outside the mold, the first day is never as simple as jauntily walking through the schoolhouse doors with a cute backpack.


 But oh, I dream of that day…when all that disabled students must worry about on day one is if their new sneakers fit. 


Until that day comes, my heart remains with the disabled kids breaking back-to-school barriers that simply should not exist. I salute the courage and grit it takes to wade through the system, to keep showing up in places and spaces that too often suggest that you don’t belong. I’m here to tell you that you do belong, in all your perfect wonder, and you always have. Anyone who believes otherwise has so much left to learn.


To those disabled students, wherever you are, the first thing I think of at “back to school” time is you. I know the feeling of waiting for a perpetually late short bus with an ancient wheelchair lift. The feeling of hoping for classrooms that you can freely navigate. Of crossing your fingers that someone, anyone read your IEP. As someone who needed personal care assistance in school, I know the bravery it takes to trust new people with your body. And I pray with everything in me that the people chosen to care for you will be kind.


I was once where you are, my head spinning with the same galaxy of worries. You are not alone, although it may feel that way right now. On your first day of school and on every day forward, you make me proud. Get out there and show the world how worthy, beautiful, and fulfilling disabled lives can be.


And to the non-disabled educators, classmates, and parents reading this, ask yourself what you can do to dismantle ableism in school. Ableism harms everyone and it ends when we all commit to fighting it. 


The fight will have been worthwhile if one day, not long from now, the next little girl in a wheelchair finds herself rolling on a much smoother path.


Old ID photo of me at age 12. I am a white young woman in a wheelchair with a blondish ponytail, glasses, and an aqua tank top.

Image: Old ID photo of me at age 12. I am a white young woman in a wheelchair with a blondish ponytail, glasses, and an aqua tank top.

Wednesday, July 7, 2021

An Imperfect Miracle: Tarlov Cysts, Chronic Pain, and What I've Learned So Far

 When I was diagnosed with symptomatic Tarlov cysts in March of 2019, I was simultaneously terrified and relieved that my pain wasn’t imaginary. Those little uninvited hitchhikers on my sacral nerve roots explained the hellish invisible burn I experienced on the back of my thighs that made transfers, sitting on a toilet, and pulling down pants feel tremendously painful in a leg-shaking, breathtaking kind of way. Because of their proximity to essential nerves, they are notoriously challenging to treat. I am tremendously privileged to say that I was able to have cyst repair surgery with one of two surgeons in the U.S. willing to operate on them in October 2020. 


It’s a long, ongoing recovery that is as much about the mind as the body. 


I mentioned in previous writings that chronic pain changes you. It’s hard to trust your body to move without sending out a zap of pain lightning. Hard to let go of things you may never do again. Hard to realize that your body is an example of human fragility. Hard to reconcile a body that once moved more freely with the cautious, measured movements of your current vessel. 


Growing up with cerebral palsy, my movement had always been more limited. I’m tremendously proud to have CP and in so many ways I love the way it’s sculpted my body. People with CP, I always say, have beautiful hands, with fingers that twist to the side and pulse with the energy of overexcited muscles. But CP can also sculpt the body in ways that are challenging, no matter how deep my pride. With age, cerebral palsy becomes more and more physically unkind. Arthritis creeps in. Feet turn. Hips drift and gait slows. Joint pain is a familiar visitor. Needless to say, when I also developed Tarlov cysts, I felt betrayed by the universe. 


Hadn’t I already paid my disability dues? Did I win some sick game of Wheelchair of Fortune? Alas, having one disability does not exempt you from all others. That was a hard lesson to accept. And even in the midst of acceptance, I’d be lying if I said a “why me?” never creeps in. 


Nearly 9 months post-surgery, I’m happy to report that I’m doing well. My nerve pain is still present, but drastically improved. The gastrointestinal issues I battled have also improved and my incision is beautifully healed.


 My mind has healed more slowly. Nerve pain is unpredictable and nerves that have been surgically disturbed take a while to calm down. Waking up every morning not knowing what my pain level will be is probably the hardest part. When you have that kind of chronic pain, the brain is always on defense, screaming “Oh no! What if it’s a 10!” even though you think the 1-10 pain scale should be replaced by 1 to flame thrower on your leg. Even in places that no longer hurt as they once did, the ghosts of old pains remain imprinted in the mind, as does the anxiety that they will sneak up behind you and come to life again. It’s like the height of your pain won’t let you forget what it felt like. But the monsters in our heads scream as they’re dying, and I know that one day, I will chase out their last shudders.


Unfortunately, the S1 cyst could not be fully removed due to its location. Luckily though, it is prevented from growing and has even shrunk some. On my higher pain days, its hard not to fantasize about ripping the remaining piece of cyst out of my back and harder not to fantasize about the body I once had before this tiny cyst that no one has heard of stole so much from me. But as I’ve said before, I am in awe that my body continues to fight for me. Proud of the storms we have weathered together. I do my best to focus on how far I’ve come instead of how far there is to go. I am a human being and sometimes I fail in that effort.


I was talking to a friend recently, explaining that my remaining nerve pain goes up and down like some kind of unenjoyable log flume. There are days that are “better” and “worse” for no apparent reason and sometimes, I joke that breathing the wrong way upsets my “tenant” at the S1 nerve root. My friend said she was sorry and that she had hoped I would be pain-free, that the surgery would deliver a miracle. If I’m honest, I want that too. I want it so much it’s hard to fathom, unless you have also stood among the broken pieces of a once pain free body, digging through the wreckage for the parts of you that are survivors in the rubble.


But then I thought for a moment, and I wrote back: “I’m trying to think of it as maybe I already got my miracle. That I’m still here.”


 It’s tremendously hard not to want more, not to want the magic wand version of a miracle that pops up in Disney movies. 


But my conversation with that friend revealed something to me: the miracle has already been delivered and I am standing in its midst.


 I am still here. 


The pain ghosts didn’t snatch me in the night, though they try. I scoot to the side of my bed every morning, at times with a little boost from an anti-inflammatory and get up. I laugh a lot and my latest burst of dark humor is an idea for a spin off of Michelle Obama’s cooking show, Waffles and Mochi… a show where people eat while complaining about chronic pain called Waffles and Motrin. I am thankful to have no additional nerve damage. Gratitude is not a salve for loss, and it does not invalidate the very real pain that is unfortunately a part of being human. Pain too, deserves to be felt, without being slapped down by a “just be thankful.” But gratitude sure makes a lovely friend to keep “this sucks” in check.


I’ve learned from this odyssey that healing doesn’t always look exactly like we want it to. Healing is slow and its messy, but I can feel its presence. While shouting at the horizon line for an “As Seen on TV” miracle, I nearly missed the one that has already arrived. It’s a little more dilapidated than I pictured. A lot more. It likes super soft comfy pants that don’t provoke angry nerves. 


The miracle I seek is here, imperfect but present. May my eyes be open to see it.

MRI image of a large cyst on my spine

Image: MRI image of a large cyst on my spine

Sunday, May 30, 2021

Uber's Lack of Accessible Vehicles Leaves Disabled People Seeking "Free Vaccine Rides" Behind

On May 24, 2021, I was excited to receive an email stating that Uber will be offering free rides to COVID vaccination sites from May 24 to July 4. The email cheerily announces, “Your free vaccine ride is waiting!” I think this is an excellent promotion, especially given that lack of transportation is a huge barrier to vaccine access. But… pun totally intended; the email got my wheels turning. 


What about people with mobility disabilities?


Anyone who has met me for more than a millisecond knows that I get around in a 450-pound power wheelchair. I have lost my ability to safely and comfortably transfer into a typical vehicle and cars without modifications can’t accommodate a heavy non-folding wheelchair like mine. And finding a wheelchair accessible Uber, especially in the suburbs, is about as easy as finding a unicorn. Most areas, especially those outside of major cities, don’t yet have access to wheelchair friendly Ubers. At home on Long Island, I have never been able to call an accessible Uber; thus, the idea of riding in one still feels like some fantastical urban legend. 


That’s right—I have committed a millennial mortal sin. 


I, Kathleen Downes, have never been in an Uber. 


For this country to address the vaccine transportation issue with a largely inaccessible fleet of vehicles is disappointing, to put it mildly. I am fortunate to have my own accessible van and parents who could drive me to the vaccination site when I was vaccinated this winter. I am aware of how wildly privileged I am to have such support. And I am thinking of the millions of mobility-impaired Americans who deserve the same opportunity. The Uber promotion fails them, given that Uber Wheelchair Accessible Vehicles (WAV) are only available in select cities nationally. Lyft's accessibility record is similarly dismal. 


According to my search, WAVs through Uber are only available in New York City, Austin, Boston, Chicago, a small part of Houston, Philadelphia, Los Angeles, Washington DC, Phoenix, Portland, OR; and San Francisco. Even within these cities, locating an accessible Uber is not as easy as finding a typical Uber ride. Folks often report a longer wait time and a significantly more difficult experience when searching for an accessible vehicle.


Never far from the front of my mind is that if my parents or an aide were not around to drive me, I too, would have extremely limited transportation options to get a vaccine or to go anywhere. 


Amid a pandemic that has disproportionately claimed the lives of disabled Americans, a “free vaccine ride” promotion without a guarantee of accessible Ubers in every place across this country leaves a bitter taste in my mouth. Considering that people with disabilities and chronic illnesses have an elevated risk of COVID infection, it simply makes sense to facilitate our access to vaccination sites. To do otherwise, when the virus has uniquely devastated our community, is exceptionally cruel. 

The vaccination process in general has already been rife with challenges for disabled people and we certainly don’t need any more stumbling blocks. For those who are multiply marginalized, such as BIPOC or low-income wheelchair users, the barriers are even greater. 


It’s easy for those who are non-disabled to casually suggest mass transit as a solution if accessible Uber is not available. But many folks remain unaware that public transportation may not exist outside of major cities. Further, the public transit systems in most major cities are only “sort of” accessible. In New York City today, approximately 25% of MTA stations are accessible. Navigating them is a labyrinth of broken elevators, janky ramps, and trying not to gag from the scent of mass transit’s signature fragrance: urine infused garbage on a hot summer day. For disabled people with spatial impairments or those unable to travel without an aide, mass transit is often out of reach. Paratransit, the door-to-door accessible bus service for disabled riders, is notoriously unreliable and highly likely to take a detour to the seventh layer of hell.


Mass transit discussion aside, if people without mobility impairments can easily get a free Uber to a vaccine site, disabled people should get the same chance. 


Uber’s lack of accessible vehicles makes their attempt to provide equity through free vaccine rides feel incredibly ironic.


If Uber truly wants to promote equity, it won’t do so by leaving a whole group of vulnerable people behind.

Biden tweet
Image: Tweet from Joe Biden says "Help spread the word: From May 24 to July 4, Uber and Lyft will offer everyone in America free rides to and from COVID vaccination sites.

Sunday, March 28, 2021

Spotlight on "Social Fitness:" A film by Anna Pakman

 Written by Kathleen Downes


March 25, 2021


Over the past year, we’ve all had to adjust to “the quarantine life.” The snacks we left in our now abandoned offices are on their way to becoming ancient ruins. We’ve nearly forgotten about this strange concept called “pants.” We’ve adapted to acting like we are allergic to other humans. Quite simply, since COVID-19 changed everything last March, we are in an alternate…Zoomiverse. 


With our lives changed beyond comprehension and our hands raw from Purell, this situation has brought to mind an old saying for when things get absurd—“we may as well laugh or we’d cry.”


New York City based filmmaker and digital marketing executive, Anna Pakman, is choosing to laugh. Her upcoming film “Social Fitness” puts a humorous spin on the prospect of adjusting back to “normal” life as the pandemic begins to show signs of easing and explores the hallmarks of pandemic culture, from awkward Zoom weddings to the widespread abandonment of concern about our outfits, through an uplifting and witty comedic lens. 


Social Fitness” was created as part of the Easterseals Disability Film Challenge. Founded by disabled actor Nic Novicki in 2014, the challenge provides a platform for new voices in the film industry and strives to amplify diverse narratives around disability. Pakman is excited and thankful that Easterseals is paving the way for her and other disabled professionals.


The film features internationally renowned comedienne Maysoon Zayid, known for her viral Ted Talk “I got 99 problems…palsy is just one,” in addition to appearances on General Hospital and Adam Sandler’s You Don’t Mess With the Zohan. Joining her in the star-studded cast are Bree Klauser (Audible Original Phreaks,Apple TV’s SEE), Anita Hollander (National Chair, SAG-AFTRA Performers with Disabilities Committee, Law & Order, FBI: Most Wanted), Liz Simons (Broad City), Eric Stafford (The Blacklist, Alpha House), BJ Lange (Jimmy Kimmel LIVE!), Shashi Bangera (Sesame Street, Kelly & Cal), Mary von Aue, Josey Miller, Sylvia Longmire. On production are JD Michaels of michaels.adams, Liz Pritchard (A & E’s The Employables) and Stefanie Parish. 


Both Zayid and Pakman have cerebral palsy and they are joined by a talented and diverse cast including performers with a range of disabilities such as autism, multiple sclerosis, PTSD, osteogenesis imperfecta, and ADHD, among others. Seven of ten people you see in the film have disabilities, while the rest are non-disabled allies.


For Pakman, the inclusion of people with disabilities in front of and behind the camera is personal. When asked why disability representation matters so much in her work, she recalls growing up in the 1990s and early 2000s, wondering why no one on TV or in movies “looked like her.”


On the rare occasion that people with disabilities were referenced, she told me, the stories told fell into stereotypes, either “super tragic stories of some poor cripple in the news or some super heroic feat that the average person can’t achieve.”  Through her work, she seeks to tell authentic stories of people with disabilities leading ordinary lives. 


However, make no mistake, Pakman is emphatic in reminding audiences that performers with disabilities should not only be featured in media about disability, but instead, in all types of media, in all capacities. She states, “People with disabilities can play any role, in front of or behind the camera.”


However, the industry has been slow to recognize the talent of the disability community. Pakman spoke of a recent study by the Ruderman Family Foundation which found that despite being about 20% of the population, only about 2% of primetime characters are disabled, and of those, only 5% are played by disabled actors. 


The practice of casting non-disabled actors in roles written for a disabled character, sometimes called “cripping up” has caused controversy in the community, most recently with the casting of the non-autistic actress Maddie Ziegler in the title role of Sia’s Music, about a young autistic woman, a casting decision Pakman calls “so offensive.”


So-called cripping up has real consequences for performers with disabilities looking to enter the notoriously competitive industry. Pakman says, “when someone who is not disabled is cast in one of the very very few roles actually written for people with disabilities, you deny the opportunity of employment to an actor with a disability.”


 Pakman points to the markedly lower employment rate of people with disabilities, which stands at about 31% and has been significantly impacted by the COVID-19 pandemic. Real representation, however, has industry-wide benefits beyond providing jobs to disabled employers. More importantly, Pakman asserts, the casting of disabled performers creates more authentic material that is more enjoyable for all.


When naysayers challenge that notion, claiming that disabled actors won’t be marketable, Pakman, no pun intended, doesn’t buy it. She stresses that audiences gravitate towards authentic portrayals and those who don’t believe that they will sell tickets are underestimating the public’s appreciation for real, human stories. She cites the accomplishments of Oscar-winning Marlee Matlin in Children of a Lesser God, a film she argues would not have been nearly as successful if Matlin’s role had not been played by a Deaf woman. Given a pipeline, she says, performers with disabilities are more than capable of working among Hollywood greats. Also coming to mind, she says, is actress Ali Stroker, who won a Tony award for her 2019 performance in Oklahoma! and has since become a household name.


Although Pakman and her team are passionate about disability in film, “Social Fitness,” she says, is not just a “disability film.” The project is meant to highlight the universal struggles of the pandemic, and was created with the hope that all people can find a relatable moment in this tale of… wait for it…these unprecedented times. Of her characters, she says, “they are just regular people, who happen to have disabilities, dealing with regular things” from cat obsessions to our collective hesitation to wear anything but sweatpants ever again. “Social Fitness” defies the trope of disabled folks being inspirational for leaving the house. However, Pakman jokes, in these corona times, anyone leaving the house, especially in (gasp) jeans, “kind of is an inspiration.”


Although Pakman and her powerhouse cast hope to bring some levity to the situation, she acknowledges that not everything about the pandemic has been sunshine and roses. She describes her own moments of depression, as well as her own fears about medical rationing endangering people with disabilities in a system that does not value our lives. She is “grateful to have the basics: a home, food to eat,” knowing that many have “suffered much more” in the past year. Given the many immensely painful aspects of the COVID-19 pandemic, the quirky, spirited, and delightfully snarky “Social Fitness” aims to deliver the laugh ‘til you snort break so many are craving.


While it can be difficult to imagine anything positive about this challenging era, the cast and crew felt excited about the ways in which the pandemic allowed them to try new filmmaking techniques. The film was largely shot on cellphones, which Pakman states now deliver “cinematic quality footage” in a handheld device. The learning curve of making a film in quarantine forced new levels of creativity and highlighted just how essential strong communication is in making a successful project. Quick thinking— and you guessed it—Zoom, enabled collaboration between folks from New York to Los Angeles and Florida. In many ways, a cast and crew of majority disabled people was uniquely prepared for this moment. For people with disabilities, adaptability and innovation are inherent given the constant need to problem-solve and to navigate a less than accessible world.


With light-hearted quips about emerging from our Zoom caves, “Social Fitness” hints at the end of corona captivity. However, Pakman warns, the pandemic is still very real and she hopes audiences will come away understanding the importance of mitigation measures like masks and social distancing.


She also hopes that the project will encourage the inclusion of disabled folks in the industry and provide more opportunities for her actors. Says Anna, “I’m hoping that when people see someone with a disability, they judge them solely based on their talent and what they say they are capable of.’”


To those who are hesitant to welcome performers with disabilities on the stage and the screen, she has a warning: “You will miss out on a lot of talent!”


“Social Fitness” is available to stream on the Easterseals Disability Film Challenge YouTube and Facebook pages now!



Don’t worry; your cat, your homegrown basil, and your sourdough bread are all cordially invited.


Social Fitness Movie Poster     
Image: Social Fitness: A film by Anna Pakman. An image of a bandage and the text "It's time to rip the bandage of comfort off the hairy back of complacency." Featuring Maysoon Zayid, Shashi Bangera, Anita Hollander, Bree Klauser, Liz Simons, Mary Von Aue. #SocialFitnessMovie

Friday, March 19, 2021

"On A Scale of 1 to 10": Tarlov Cysts, Chronic Pain, and Me

 It started with a dress. 


In the fall of 2018, while trying on a dress for a wedding, I remember feeling like the fabric was pressing on a bad sunburn on the back of my legs. Thinking I had a rash, I went to a dermatologist who found nothing. The weeks passed. The months passed. The odyssey began. Seeing as I already have cerebral palsy (CP), complaining of leg pain in my case seemed fairly unremarkable to most doctors. 


“Muscle tension”. “Tight hamstrings”. “Pinched nerve”. “Bursitis”. “You sit a lot”, they mused. 


Slowly, casually, it was implied that perhaps it was all in my mind. 


I knew this wasn’t just CP. The doctor list grew. The frustration grew. The pain ripped through my skin, to the point where putting on a pair of pants felt like fire. Every transition between sitting and standing became taxing, like an awful pain lightning. Getting on the toilet and off the toilet became a chore. 


And harder still, the fact that this “invisible sunburn” gripping my body had no name, but cast itself over everything at once. 


Chronic pain changes you. 


It rewires you, a silent puppeteer that dictates your movements, if there are any movements at all. It makes the place that has always housed your soul feel unfamiliar, strange. 


The body I now lived in felt like it no longer belonged to me. At the same time, the steady beat of my heart reminded me that I was still here, still me, and if getting out of bed was all I could do, that was enough. 


With every failed appointment, every “never seen this before…” I grew more and more dejected, uncertain if I should even believe myself about this nameless fury dancing through my nerves. 


Rate your pain, they’d say, offering a corny chart of cartoon faces that progressed from looking “vaguely annoyed” to “fully despairing.”


And I’d choose one, knowing full well that none of them represent the feeling of being burned from the inside out. 


Knowing full well that squishing my untamed pain under one of these cookie-cutter labels is one of the rules. 


Chronic pain is quick to teach you the rules.


Perform your pain clearly enough that men in white coats see you as worthy of their help.

 Show your pain, but not too much, or they will call you “hysterical,” “dramatic,” even if they only use those words inside their own heads. 


The rules require a sweet smile, to ward off the “just think positive!” folks. But don’t smile so much that the men in white coats can decide you “don’t look like a person in pain!” 


I wish I could tell them that a person in pain may look like themselves, sound like themselves, “have such a pretty smile!” and still want to curl into ball amid what feels like the wreckage of a former self. 


The truth is, the pain storm is constant, but you learn its choreography. Because there are still dogs to be walked. Emails to be answered. Texts to be sent. The cruel reality and the splendid miracle of it all is that life ticks forward even when it feels like the pain may consume you. 


When I neared two years since the onset of the mystery pain, I finally convinced a doctor to look at my spine.


When the MRI came back, there it was. March 9, 2020. On my sacral nerve roots were a series of neural cysts… that no one had ever heard of.


 My initial thought, like many others, was what the ever-loving f*ck is a Tarlov cyst? 


Put simply, a Tarlov cyst is a sac of fluid that presses on a nerve root and makes it scream. Some folks with Tarlov cysts have no symptoms at all. 


Others have debilitating symptoms ranging from burning, stinging, and limb weakness to pelvic pain, urinary and bowel issues. I fell in the latter category and was just beginning to understand the magnitude of my challenge with a devastating disorder that isn’t even on most people’s medical radar.


I quickly learned that many surgeons don’t believe that Tarlov cysts can be symptomatic, if they acknowledge the cysts at all. It was vindicating and validating to have a name for the “invisible sunburn” after nearly two full years of insisting that something was very wrong. 


At the same time, it was terrifying to ask “what next?” in the face of a poorly understood disorder that sent lightning through my legs and was evidently unrelated to my CP.


 All the while, I couldn’t shake the feeling that if I were a super athlete who suddenly doubled over in pain, my symptoms would have been taken seriously. Instead, I had been too often dismissed, as if my pain as a disabled woman were just a matter of course.


 It seems that disabled folks, especially women, are expected to simply accept their physical pain, because “well, you’re in a wheelchair anyway.” That unspoken but ever-present sentiment hurt nearly as much as the zips of fire that pinged off my skin like the signal off an overzealous cell tower.


I was fortunate enough to have surgery last October in Sacramento, CA with one of the two surgeons in the United States trained in Tarlov cyst removal. I am fully aware of my tremendous privilege and dream of a world where others who suffer from this disorder can quickly get help.


Six months onward, healing is not a linear process. It’s more of a dizzying zig zag. The physical scars of the surgery run through my flesh—but more difficult are the unseen wounds from medical trauma, gaslighting, and the feeling of being a stranger inside myself. 


My old spastic, but fairly free movements are gone, replaced with careful, measured steps. Getting out of bed is a lengthy and cautious routine of moving a once unified being part by part as not to perturb my still-frazzled nerves. 


I live with the ghosts of past pain episodes; they show up uninvited in the form of involuntary gasps when I move in a way that once hurt. I equally live with the fear that old pain ghosts will come back to life and snatch my hard-won healing. That they will sneak up behind me and show me a true “10” on that infamous pain scale.


I feel tremendously better, stronger, and more grateful each day for the opportunity to learn my body’s new rhythm.


Still, I am grieving and I think a part of me always will be. Living with a disability, I’ve learned, is a series of rebirths, as wear and tear and achy joints and funny- named cysts no one knows about make irrevocable marks on my earthly dwelling. 


Hiraeth is a Welsh concept of “longing for a home to which you cannot return.” I find myself filled with a kind of body hiraeth, a longing to return to a body that takes springier steps, one that doesn’t wince while swinging into bed, one that doesn’t have 6 plates and 12 screws coursing through a fixer- upper spine.


I wrestle daily with the struggle to reconcile two contradicting truths. I feel both betrayed by a deteriorated body and utterly in awe of its strength. 


No platitudes can lessen the sting of what I’ve lost, but no loss can diminish the wonder of this body’s resilience.


Grief and joy can live in the same house. And most times, they do. 


I long for a body, a home, to which I can never return…and yet, I listen to the beat of my heart and I know that I never left that body at all. It is changed… but it is still here… and so am I.


 One day, it will feel like home again.

Image: Me smiling in a mask and hospital gown, seated in a wheelchair

                                 Image: Me smiling in a mask and hospital gown, seated in a wheelchair

Saturday, January 2, 2021

A Poem About 2020... Because What On Earth Was That?!


As 2021 begins, rather than subject you to a blow by blow summary post on social media, I offer you this poem about 2020, a year that was a collective "WTF?" In the spirit of "womp womp womp," the poem is accompanied by a photo of the seeds I planted during quarantine that.... grew into thriving sunflowers, a metaphor for our resilience and strength amid the pandemic. Er... just kidding. Most failed to sprout and the ones that did quickly withered and died.

Happy New Year! For the love of God, may this one be better.

New Year’s Eve


2020 wasn’t great

In fact, not good at all

For most, the year was just a string

Of bummers big and small


We made our vision boards

But they soon came crashing down

Our to do lists were upended 

When corona came to town


The brand-new year before us

Didn’t match up with our plans

The universe called out to us

“Shut up and wash your hands!”


In March we made some #Goals

Grew plants, baked homemade bread

By May, we barely brushed our teeth

And all the plants were dead


Our Pinterest boards

Once full of clever projects

Soon went stale

Our “recipe a day” collections 

Deemed an epic fail


Now we Google “what are days?” 

Is time even a thing?

And thank the Lord that Taylor Swift

Still felt like she could sing


The news shows are a mess

But the memes just keep improving

Our pets are glued upon our laps

And swear they’re never moving


We’ve taught our elders how to Zoom

At least, we’ve bravely tried

We’ve worn our crusty sweatsuits

Watched old TV and cried



Spent too much time on WebMD

Had acne from our masks

 Felt wildly accomplished for doing basic tasks


Refreshed our browsers many times

And realized, with despair

That the same five Apple news alerts 

And emails are still there


And somehow, here we sit

Another New Year’s Eve

No platitudes can change the fact

That there’s a lot to grieve


But maybe we’ll come through this

With a little more compassion

With fewer judgey comments

On one another’s fashion


…I truly think that you look hot

In gray from head to toe

And I still think you’re awesome

If your basil didn't grow


If you didn’t do Zoom yoga

Pick up French or learn to skate

If all you did was cry and eat

I still think that you’re great


It’s a legendary feat

To make it through the day

Can we all agree that Pinterest 

Is bullshit anyway?


One day we’ll look back 

And we won’t think about our hair

Our neighbor Karen’s sourdough

Or pictures in neat squares


We’ll remember all the loved ones

Who helped carry us through

All the folks who lent a hand

And all the hearts that grew


And all the healthcare heroes

Who gave their very best

Whose brilliant minds and gentle hands

Helped conquer this great test

Here’s to 2021

With better days ahead

We’ve all had our fill

Of existential dread


So, let’s make room for joy

Push this shitshow out the door

And think about a future

Full of hugs galore!



I have a bunch of hugs 

That are sorely overdue

And you can rest assured 

That one is meant for you.


Stay safe. Wear a mask. Thank you healthcare workers.



An egg carton full of dirt, containing seeds that never grew
Image: An egg carton full of dirt, containing seeds that never grew. Next to it is a spray bottle of disinfectant that I almost squirted on them instead of water, which is in the other spray bottle.