I want POTS to have the same recognition and funding as MS, as Parkinson’s. I want every disorder that affects and take so much from so many to have adequate funding for research.
I want it so badly that I’m willing to do what I hate most in the world—
In the middle of June.
So, will you sponsor me?
I know a mile doesn’t seem like much, but I currently do about 15 minutes of cardio every day on my recumbent bike—and walking a mile will be a huge challenge for me.
One of my cardiologists told me, “You will never enjoy exercise, your body was designed to hate it.” I suffer from excruciating back pain when I go walking in addition to tachycardia, sweating, joint pain, weird tingling sensations and general grumpiness. (Tell me you wouldn’t be grumpy if everything in your body hurt.) But the statement this makes: that I’m doing what I can, that I’m on my way to recovery every day, and helping Dysautonomia International in the process? Let’s do it, man.
It would mean the world to me if you could spare a couple of dollars for Dysautonomia International—I volunteer what I can to this amazing organization that changes lives, and if you could help us continue what we do with a donation—I would appreciate it so much.
Last April I went to the mountains (well, the valleys) of Utah, where I spent my childhood summers for some R & R with family.
And then I got violently ill.
I went to Utah to recharge. I started up Round 2 of TMS last October and even though things were going well in treatment, I was struggling. Things came to a head in January when I felt like I was being crushed under the weight of dysautonomia, relationships, treatments, plans for my future and my own fatigue. Every part of my body and soul was tired.
Mom suggested that I needed a change of scenery for a while. The best place she could think of was Utah, a place where I could be surrounded by family as it’s where the majority of our gigantic family is concentrated. She made the plans for me and I was set to fly out the second week of April.
my view of the Rocky mountains from the airplane
I was beyond excited to go—I was nearly crying on the plane with my face pressed up against the window staring at the Rocky Mountains topped in snow. I hadn’t been back to Utah in almost 11 years since my grandma’s funeral which has been weird for me—as a kid I spent anywhere from one to six weeks there in the summers.
picking pinecones with my mom’s dad, Papa, in Logan, Utah as a tiny one
Traveling was nerve racking. It was only my second time flying alone and first time flying with my POTS diagnosis. My parents insisted that I make use of as many disability accommodations as possible—and that included having someone push me in a wheelchair from check in to the gate. I felt embarrassed (did I really need it?) but it ended up being a huge help.
During the flight, despite staying hydrated and doing everything to keep my blood flowing, I was dizzy and dealt with more heart palpitations than I’m used to. (I usually have less than a handful a week—I had about five that day). I was optimistic though. I was determined that I was going to be good—great, even.
But once I arrived—literally, that night—I got sick. I ended up having three IBS flare ups in the 10 days I was there and they sent me through the ringer. They lasted all night and required me to spend at least the next day or two recovering.
My aunt and cousin each went above and beyond taking care of me when I was with them. I was showered in Gatorade, saltines and chicken noodle soup which was heaven. They were perfect hosts.
What worried me the most is that my flareups were unlike any other IBS flareups I’ve had in the past. (I’m skipping details because I already hate mentioning IBS but I’m working on moving past that—the rational part of my brain is rallying me to work past the shame because why be embarrassed about an illness I inherited?) Anyways.
When my stomach doesn’t act as usual, when my flareups are different than my version of normal, my mind begins to spin out of control.
I was Googling possible things it could be, possible complications—it wasn’t altitude sickness. It wasn’t anything I ate—I was eating carefully, and even when I did eat something close to a trigger food (like some fries), my stomach held out that night. Could it have been a reaction to local water? (If that was even a thing?) Was it a reaction to the fatigue I felt from travel? Was it anxiety about being away from home?
What was happening? Why was my body doing this? Did this mean my body and Utah, my literal ancestral homeland, were no longer compatible? Would I ever be able to come back to my family without getting violently ill every three nights?
And would I be able to get home without getting sick?
I was terrified. And we all know that fear is awful for illnesses.
Utah looking generally beautiful
my extended family is outrageously fantastic, I’m slacking.
Despite all of this happening, the days I felt well and wasn’t sick were lovely.
My very first day in Utah, I got to hang out with a cousin who is a fellow chronic illness patient and catch up. We both got to share that “this sucks” sigh with each other and exist in the same space of understanding, with that unspoken “hey, I know you get me because we’re both chronic” even though our illnesses are nothing alike in nature.
I had dinner with two of my cousins on my dad’s side of the family who I hadn’t seen since I was eight. They’re fun and kind and gorgeous and we had so much fun comparing funny things our dads do that they must’ve started together as kids.
I stayed with my cousin Catherine’s family—she and her husband, Jamie, have four kids and they’re all winners. Their oldest son turned 16 and went to his junior prom while I was there. Their oldest daughter (who is an amazing chef) got a brand new crepe pan and I got to enjoy the fruits of her labor my first night there. Their younger daughter and I had deep talks about life plans and books and entertainment and their youngest son and I were both sick—him, with a nasty cold. We watched a ton of movies together. (Disney Channel is SO different now it’s nearly unrecognizable.)
Catherine, Jamie and their family just got back from a trip to Europe and had the most amazing chocolate.
Easter was untouchably perfect, though. We went to church and came home to rolls, mashed potatoes and ham. I harassed my only younger cousin on my mom’s side into coming from school and joining us for dinner (hi, Zach! do you read this?) and immensely enjoyed his company in addition to several of Jamie’s family members who joined. I may have gotten carried away when we started talking about The Office and Parks and Recreation, but that’s not my fault—those shows are just so good.
I got home without getting sick which was a huge relief. I had to cancel a second leg of my trip which was a huge disappointment, but returning to my house, my room, my bed was a huge comfort.
I’ve gotten sick in the same way I did in Utah once since I’ve been back and my stomach has just been pretty unstable—so I’m on the waiting list to see my gastroenterologist (she’s very popular so it takes forever to get in.)
I’m still nervous about what getting sick meant though—
Is my body incompatible with traveling now? Was it food poisoning? Am I in a new era of problematic health?
But at the same time, the trip was good for me.
I conquered one of my biggest fears—getting sick away from home.
So fingers crossed for better health, and I’m so glad for the good time and good days I did manage to have.
A month ago, I had one of those big nights you remember forever.
I’ve felt nervous writing my recap blog—I wanted to do it justice—but I realized I’ve worked myself into so much of a tizzy that I haven’t written anything at all now because I’m in a writing paralysis. (Isn’t it fun being perpetually stuck in your own head?)
So now’s the time to share—forgive me if it’s a bit long, but when you get your 15 minutes of fame, you document it thoroughly, even if it’s belatedly.
Last January, you could say I was a bit distraught about Trump’s inauguration. Thankfully, my uneasiness propelled me into action and I spent a lot of nights with insomnia writing letters to senators and representatives on committees about issues that mattered to me—the Affordable Care Act, disability rights (especially pertaining to education), the travel ban…
My friend and I protested the travel ban at Dulles International Airport on January 29
A few weeks later, his staff got in touch with me and asked permission for Senator Kaine to share my story. I fell over myself saying “yes! of course!” because that’s one of the many (many) reasons I’m open about my life. If anything I’ve been through can help someone else, if my story can be shared to help others for a bigger, positive purpose, then yes, share it.
(I also asked his office to send along a lot of my personal feelings about cabinet nominations to which they kindly obliged. I’ll say this until I’m blue in the face: Senator Kaine’s staff is the best.)
On February 9, during Tom Price’s hearing to become the Health & Human Services secretary, Senator Kaine read a selection of the 1,000+ letters sent to him about the ACA and mine was one of them.
I nearly fell off my bed when I watched the video, my hands were shaking watching my senator, a man who was nearly Vice President of the United States, read my words and have them entered into the senate record.
Throughout my life, so many things I have said have been brushed aside and ignored by countless people in various positions of authority—doctors, teachers, school administrators, church leaders, bosses, group leaders in peer projects… For me, validation of my feelings and experiences from individuals I value is particularly significant and in a very real sense, healing.
I don’t know how much more validated I could possibly be: I was being supported by a high ranking government leader, vowing to take my side and fight for the ACA because of my story and stories like it.
Phrases like “hell yeah!” came to mind. (As well as “suck on that!” to all of the people who have doubted me throughout my life.)
I was flying high for the rest of the month, assuming these were my 15 minutes of fame. Then, I got another phone call at the end of February inviting me to be Senator Kaine’s personal guest to the Joint Session of Congress, basically the State of the Union lite.
NO BIG DEAL EXCEPT THAT IT IS (and then my brain short circuited.)
So how do you prepare to attend a Joint Session of Congress?
For me, it involved:
You could say I was a bit nervous…
getting my hair cut
buying a new outfit because I own almost exclusively t-shirts, jeans, yoga pants and a denim jacket
buying makeup to make myself look presentable
spending hours writing, writing, writing because I had to come up with something smart to say
FREAKING out because even though I’d done lobby days with Dysautonomia International, and one of my childhood friends’ father was a congressman, this was so different—
I got to bring my parents to the Senate Russell building on February 28. We arrived in the late afternoon and got to know several of Senator Kaine’s staffers who went over my schedule for the evening.
We talked about how his office works—my family and I got to grill them on what they do, the inner workings of Senator Kaine’s schedules, and everyone was so kind and patient with us. (This says a lot about what they go through on a daily basis—my dad’s questioning is very long, very inquisitive, very thorough.)
What nearly every person said is that constituents’ stories are what drive them to do their jobs. No one I spoke to has a personal agenda or even an axe to grind—they’re doing their jobs to make the country a better place.
I did an interview for a local TV station (I never got to see if they used it, but the reporter and cameraman were awesome), had some snacks (three cheers for free Virginia products—peanuts and Pepsi beverages) and kept trying to think of things to say that would make me sound smart.
Tim Kaine is my new best friend, even if he doesn’t know it
Senator Kaine met with my parents and me for a good half hour—he’s the real deal. He took so much time to ask my parents about how and where they grew up and met, about if they had any other kids (my brother couldn’t come because he had to work, we’ve given him endless grief about this)… and when it came to me, I felt heard.
I explained my journey through Fairfax County Public Schools—I told him how we struggled getting a Section 504. That surprised him, given what a successful school system it is, but we shared some other facts about it, and he really took the information in. I told him about POTS and dysautonomia and he picked up on the blood flow problems of POTS quickly—it was beyond heartening and made me think that he’s heard quite a few medical stories like this before. (I also got to give him a dysautonomia awareness pin which he graciously accepted!)
I’m sharing this not to necessarily convert you all to be Kainiacs (another Tim Kaine nickname we can attribute to John Oliver), but to remind you guys that good members of government exist despite Congress’ terrible approval ratings. Yes, some members are nothing short of disconcerting, but others are fueled by constituent stories and want to stand up and fight. I’ve got some really cool senators for my state–find out if you do, too.
After our meeting, Senator Kaine and I did a tele-town hall, where a software system calls Virginia residents and invites them to join in on a conference call. The Senator gave me the opportunity to again share my story about what the ACA meant to me before he answered people’s questions.
I was nervous and scared but daaang. I did it.
I told everyone how for a long stretch of time in my teenage years, I felt more comfortable in a doctor’s office than I did in a classroom. How I realized early on that it didn’t matter what I wanted to do when I grew up—I needed to choose a career that was stable, lucrative and had good health care benefits, not one that made me happy. I told them how the ACA changed that and gave me hope—it gave me the comfort that I could take extra time in school because I would have my parents’ insurance until I was 26. I could even take time off to work on my health and health only if need be. How it meant I could buy insurance and be my own boss, freelance as a graphic designer, a dream of a job I had in my mind.
I also told them that the GOP calling the ACA into question with rallying cries of “REPEAL!” without a solid, safe replacement had brought all of this crashing down. I’m now terrified that my loved ones and I will lose our insurance and our futures—we all have pre-existing conditions. Will we be OK? Will we ever have health care again?
I told them that I’m an active participant in my health, I follow my doctors’ orders, I’m a big volunteer in my patient community, I don’t take my diagnoses lying down. But for whatever reason, the plans I’ve heard from the opposition party seem to promise that I’m going to be punished for illnesses I did nothing to deserve and have done everything to get rid of but cannot.
I reminded everyone that health crises happen to all of us, and if not us, to someone we love, it’s just the nature of life. Whether it’s a chronic illness, cancer, an accident—everyone needs extra care at some point in their life, and that’s why plans and laws with protection are so important to me.
After the tele-town hall, I got ready to head over to the Capitol for the grand event. When the Senator’s office heard about how much difficulty I have with standing, they arranged for a senate doorkeeper to bring over a wheelchair and assist me from Senator Kaine’s office to the Capitol.
I couldn’t bring my phone into the house chamber, so this is the only real proof I went
This was the first time I’ve ever used a wheelchair (and the first time I’ve ever even considered using a wheelchair.) My parents were the ones insistent on me using it but I felt guilt for taking it at first—at the time I was having a good energy/health day and I felt like I was somehow gaming the system by accepting an accommodation I didn’t at the time desperately need. But when I thought about the standing in security lines, I accepted.
For those of you unfamiliar with Capitol Hill—the congressional office buildings are connected to the Capitol with underground tunnels and and a trolley system. But even with the tunnels and trolley, it’s a ton of walking and standing. That night, the route to get to the House Gallery was longer and more convoluted with at least three metal detector security check points along the way.
I was feeling great after the town hall. Top of the world, having the one of the best and most memorable nights of my life. And I got to continue that feeling by accepting the accommodation of the wheelchair. If I hadn’t, I would have been sick as a dog, panting, tachycardic, sweaty, confused, shaking. (I know my body.)
How appropriate to have that continued realization that accommodations matter at an event where I represented the ACA as a young woman who’d been living nearly her entire life with chronic illness.
After the labyrinth of halls and security checks, I arrived at the house chamber and got to my seat. I was tucked away in a back corner of the room which I thought at first was a terrible place to sit but turned out to be a huge score—I was next to several family members of members of Congress and got to network by sharing a short version of my story and told them about Dysautonomia International. I also sat 10 feet away from Sean Hannity—that was a huge trip for me seeing as my dad exclusively watched Fox News when I was a kid.
Leading up to the speech, it was hard to make out who was who on the floor of the House—from my seat with a few exceptions, everyone looked like the same old white man. (Sorry.) Thankfully, I had a great view of Senators Kirsten Gillibrand and Elizabeth Warren, two of my personal heroes and women I’d love to both see run for president one day.
The speech itself was surreal.
I live for the State of the Union, and even though it was just a Joint Session address, it sure felt State of the Union-y to me.
It was very different to hear President Trump, a new person, a new president, deliver this type of speech–President Obama was the president of my teenage years and young adulthood. It felt foreign to (1) be there in person and (2) witness a president so polar opposite to the one I was so familiar with deliver remarks in his place.
The most challenging part of the night for me, even more so than the physical strain standing up and sitting down repeatedly to clap for respected guests and a couple of issues I agreed with was the deafening applause from the Republican party when Trump brought up repealing the ACA in its entirety because it’s been a disaster, period.
I was seated on the Republican side of the room and getting caught up in their applause was painful. I closed my eyes, willing them not to cry because hearing “repeal of the ACA” leaves my future uncertain, bleak, nerve-racking.
The ACA is far from perfect, but its provisions have given me hope and security:
protection for pre-existing conditions
the ability to stay on my parents’ plan until I’m 26
mental health parity
no lifetime coverage caps
I’m publishing this post after the AHCA was thrown out before a vote. It looks hopeful that the ACA will remain the law of the land for a while, and even if that leaves me feeling a little safer, I still feel the need to advocate for it. Because health insurance is the difference between life and death for millions, my loved ones included.
That’s why this matters.
OK, and just to end this on a lighthearted note–
This is the face you make after you crushed it networking, did multiple interviews, had a great time with your senator, advocated for what matters to you, and feel like you’re on top of the world. NO BIG DEAL.
What I want everyone to get out of my experience is that this all came from writing a letter to my senator. I know that attending a Joint Session of Congress might not be the dream night to other people that it was for me, but it made some waves–I showed up in my local newspapers (and a couple of national ones!) and the issues I advocated for got some light. If there’s something you care about, start writing.
Call your members of congress. It’s scary at first, but it’s not so bad. E-mail them from their websites. Write letters. Fax them online. There are so many services that make these things so easy. If there’s something on your mind (even if it’s contrary to what I’m promoting!), let them know. Be active in your government, just like Schoolhouse Rock taught you.
AND! Please be nice to the staffers! Especially the ones on phone duty!
I can’t march at the Women’s March tomorrow, even though I’m only an hour or so away from Washington D.C.
Not because I don’t want to. No, I desperately want to.
As a little girl, feminism meant my mom was having her Mormon Feminist Book Group over and they were going to laugh and be loud, but if I lurked in the hallway, my mom might see me and they’d have a cookie or mint brownie for me.
When I was eight, I declared that a women’s right to choose was very important to me after seeing the phrase listed on a poster about Al Gore’s campaign promises my brother made for school. My mom laughed and told me to tell that to my dad.
When I was in my early teens, my mom had talks with me about the concepts of modesty and “purity”—about how it wasn’t my responsibility to keep a boy (or even a man) from having “impure” or inappropriate thoughts about me. She protected me from unfair burdens society wanted to put on my small, preteen shoulders.
Anytime my mom took me anywhere, she’d point out women she thought were special or significant. “See, you want be like her when you grow up,” she’d tell me. Occasionally she’d throw in, “she’s gonna be rich,” with a smile.
These types of moments shaped my childhood, my teenage years and my young adulthood with memories of being taken care of, being taught by, and being mentored by strong women I respect, admire and love. I’m proud of this history. This history has taken my definition of feminism from free mint brownies to equality of genders, kindness and respect for everyone.
I would love to march tomorrow because I’m in the process of learning how to grow my activism and advocacy. I’m getting more involved in the democratic process, I’m calling my representative and senators, I’m sending e-mails, I’m signing those petitions.
I want to march because I’m learning more about feminism beyond my suburban white girl feminist context; I’m trying my best to study intersectionality with race, gender, sexuality, etc. while also learning about how feminism and disability intersect for myself. I’m doing my best but it will be a lifelong journey.
I want to march in honor of my favorite teachers who broke through the brain fog and anxieties I had with their patience and compassion. I want to march in honor of the mentors I had at every job I’ve ever held, who have helped me learn to be a better person and better employee. I want to march in honor of the doctors and nurses I have entrusted with my health with–and the study that says female physicians might save more lives.
I want to march because I have been loved, cared for and raised by strong women. (Mostly one woman. Hi, Mom. You reading this?)
I want to march because I am so passionate about protecting young girls and their futures. Interacting with teenagers in some of my volunteer work is one of my greatest joys and the young women I have met suffer through so much but still offer their time and support without a second thought.
I want to march because I want to represent disabled women, particularly those with dysautonomia. I want to march because I want to champion how important the ADA is and how critical it is for the health of our country and our people.
I want to march because I want to be a part of something bigger than myself. And also because their graphic design team is totally on point.
I’m not well enough to march on Saturday though.
My body is too symptomatic to make the trip. I can only stand up for about 15 to 20 minutes right now and can only manage walking a couple of blocks before I need to rest for a while.
My heart will be at the Women’s March in D.C. and at all of the sister marches where I have friends—and in New York City where a lovely couple is marching on my mom’s and my behalf through the #MarchingWithMe program.
My gratitude is with everyone there, showing up in numbers to make a point: that we are stronger together, that we believe that everyone deserves a healthy and happy life just because they exist. I thank those representing disability rights and health care rights from the bottom of my heart.
It means everything.
Artwork by Jennifer Maravillas, “Our Bodies, Our Minds”
School was not easy for me because of my health. I was undiagnosed with dysautonomia growing up, and had several other very diagnosed, very real illnesses happening concurrently with the undiagnosed malfunctioning of my autonomic nervous system. I dealt daily with a digestive system that didn’t like me very much and a cluster of mental illnesses—ADHD, OCD, anxiety and depression. Oh, and I was a teenager. (Mix until blended.)
I missed school frequently. Not because I was lazy or a bad student, but because I could barely function so many days.
I had a difficult workload—honors and AP classes. Difficult extracurriculars—I was on my school’s newspaper and had a leadership role every year I was on staff. It was my passion and it challenged me like nothing else. But I wanted it that way.
My guidance counselor told me to take it easy, that I wouldn’t be sick, that I wouldn’t be stressed if I took an easier course load—but I knew myself better than she did. I knew I would be stressed no matter what, because that’s how chemical imbalances work. I was going to do this my way.
It took me four years to get my Section 504 (another story for another day) but it was the best blessing I’ve ever received—it enabled me to customize my education to best suit my needs. My teachers were given the allowances and rights they needed to help me. They were allowed to give me spare textbooks to keep at home and in my locker, they were allowed to give me an extra day for my papers every now and then, they were allowed to let me work on things a little bit differently, so long as we kept in touch.
Because of my Section 504, we were able to switch my schedule half way through my senior year to half-days to try and promote my health. We were allowed to drop classes that weren’t necessary for graduation that were too much of a hindrance at certain points.
I missed over a month of school my senior year because of illness and disability. My assistant principal told me I may not graduate. But because of the accommodations my teachers made and the plans we made together, I graduated with a 3.7 GPA and as an AP Scholar with Distinction from the CollegeBoard.
My high school graduation, one of the happiest days of my life
I share this story because I am not special and should not be a special case or special story.
My graduation success should be the norm.
Students with disabilities across the country should be granted Section 504s (much sooner than I was, because four years of fighting is absurd) and experience every bit of protection from the Americans with Disabilities Act, as it is a federal civil rights law.
It should not vary by state. It should not vary by county or by school or even by guidance counselor.
The Nominee for Education Secretary should feel these things passionately in their heart and be the strongest proponent for them. The disabled are marginalized members of society and to be disrespected this way is unacceptable.