The Women’s March on Washington and why I wish I could be there

Jennifer Maravillas, "Our Bodies, Our Minds"

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 Women’s Rights are Human Rights.

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.

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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.

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Artwork by Jennifer Maravillas, “Our Bodies, Our Minds”

The ADA is a right, no matter what state you’re in

This is not a blog post about dysautonomia. This is political, and if that upsets you, I’m only a little sorry.

There aren’t words to describe how upset it makes me when I watch an Education Secretary Nominee say that complying with the Americans with Disabilities Act, a federal civil rights law, should be left to the states to decide. Whether she understood the question or not—it makes it clear that students with disabilities are not her priority, and that’s so many layers of unacceptable for the person leading the Department of Education to believe and say.

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

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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.

I won’t be quiet about this. I am so angry.

Sorry I didn’t answer your question

I’m a rambler when I’m nervous. And when I’m not nervous. When I’m perfectly fine, when I’m happy, when I’m angry, when I’m every emotion, I usually talk.

When someone gives me a question I don’t have a good answer to or don’t want to answer, I still answer. I’ll give them an answer to a related question without addressing the fact that I’m not even answering the thing they inquired about. If I’m slick enough, they won’t even notice.

But maybe now, after this declaration, they will.

Sometimes friends ask me about how I’m doing with POTS—and even though I’m always game to talk about Dysautonomia International and the work they’re doing, or maybe cool new research, or the fact that my arm fell asleep in under 30 seconds last night–I know my friend is kindly asking about my chronic health problem.

And here’s where the real baggage comes in.

chronically wide eyed and vulnerable

When there’s been no progress with POTS, I don’t want to tell them that. I hate that there’s been no changes. I hate that there’s nothing new to report in my health, I hate that sometimes it’s even getting worse, because then I’ll have to explain that yeah, sometimes that just happens, and no, it’s not my fault (even though I occasionally blame myself when I shouldn’t) because I don’t want them to blame me either (even when I know my friends and decent humans would never do that).

I run away from the reality of “chronic”, I run away from the reality of life and I divert their attention.

They ask about POTS, I answer about something else.

Sometimes I answer about the progress I’m making in therapy, how I’m not standing still or regressing. How I’m moving onward, forward; how I’m doing something that they can be proud of—even though the very act of getting through a day with one chronic illness, no less a handful, is something they can be proud of their friend for.

Because the vulnerable side of me feels like if I can’t produce results in one area, I better produce results in the other.

Today is a day where I can see things clearly, and I want to say and reaffirm to myself and to anyone who might struggle like I do at times: please don’t feel like your life has to be strictly results oriented. Making an effort, taking care of yourself, being a kind person matters so much more than producing tangible results in work or in health or in any realm. If you have a chronic illness, leave the results to the doctor. All you’re responsible for is effort, that’s all anyone can ask of you.

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I didn’t make any formal resolutions for 2017 on New Year’s Eve, but every year as I get older, I realize how important it is for me to be nicer to myself. I want to treat myself today like I would treat the younger version of myself—protectively and with patience and compassion. I look at my younger self and want to wrap her up and say “it’s going to be OK, just hold on!”

I want to have those same feelings for myself now, and by having those feelings, I think I’ll be able to be more honest with myself and with my friends.

And maybe I’ll get around to answering your questions head on.

2016 Dysautonomia inspired gift guide

Happiest of happy holidays, friends!

The gift giving holidays are rapidly approaching and I’m procrastinating my holiday shopping like nobody’s business. That doesn’t mean I don’t have time to help you guys in your holiday shopping for your loved ones with dysautonomia.

And if nothing here strikes you, check out last year’s guide, because I feel very confident that something will strike you as a good gift.

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Shopping reminder: when you use Amazon, shop through smile.amazon.com and select Dysautonomia International as your charity of choice! 6% of your total purchase price will be donated to them at no extra cost to you!

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Terry Cloth Robes

Some people feel invigorated and reenergized from a shower. POTSies are not those people.

Bathing can be beyond exhausting, and since you can’t change that fact, you can give the gift of a comfortable calm down in the form of terry cloth robes. POTSies can sit and dry off in warmth and comfort rather than shiver in the cold in makeshift towel coverings.

I got the pictured Lands End robe for Christmas last year and it’s my favorite robe that I’ve ever had.

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Himalayan Salt Lamp

POTSies live on salt, so it’s no surprise that so many of us are intrigued by the possibilities of Himalayan Salt Lamps being helpful. Allegedly, the lamps produce tons of negative ions which are supposed to help oxygen travel our brains more easily, help us feel more alert and even clean the air we breathe.

According to all of the research I’ve done, there’s no basis for the claims that Himalayan Salt Lamps can create negative ions strong enough to produce any of these benefits. That doesn’t mean it isn’t an awesome looking lamp, and that people on high salt diets won’t appreciate having a giant salt rock as a lamp and decoration. For that reason, I still recommend it as a great gift to give. They come in tons of different shapes and sizes.

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Swanky Box for Pills & Supplies

Most everyone I know with dysautonomia has a personal pharmacy. Some of us use clear plastic storage boxes, shoe boxes or large trunks if it calls for it. Still, it’s nice to be offered alternatives to our personal pill storage (or even storage options for our other medical supplies, because we got ‘em).

This is the perfect time for a gift buyer to give us the “ooh, pretty!” options we didn’t feel like we could treat ourselves to before.

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Spoon Ring

The Spoon Theory is huge in the chronic illness community—it started as a way for us to explain our limited energy supply in terms of spoons—and has evolved into an identity. The chronically ill are Spoonies, we need more spoons (or energy) in order to get through the day.

A quick way to pay homage to the Spoon Theory for your chronically ill friend is by gifting them a spoon ring—rings made out of old spoons that are great as thumb rings in particular. I’ve had one for about five or six years and have gotten endless compliments on it. Etsy is the best place to find them in my experience—and here are some great ones.

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Artwork

One of the good rules of gift giving is to get someone a gift that they wouldn’t buy themselves. When you’re chronically ill and strapped for cash, you’re not going to spend your limited money buying artwork for your bedroom, no matter how much it improves your morale.

I can’t say what your friend/brother/sister/daughter/son/girlfriend/boyfriend/acquaintance/secretsantaperson will like best in terms of art.

If you’re going with a dysautonomia fighting theme, look for turquoise, ribbons, spoons, zebras if they have EDS. Otherwise, just look for something that looks nice, something that reminds you of the best parts of them.

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Hat, Scarf & Gloves

Give me a room full of POTSies. Half will be shivering and half will be sweating. Temperature control does not exist where dysautonomia is concerned and winter does nothing to help matters.

Even though a lot of POTSies run warm (or even sweaty—myself included), if it gets cold where you live, hats, scarves and gloves are the classic gift for everyone, dysautonomia or not. They’re festive, they’re pretty, it’s hard to go wrong.

Also, a common comorbidity with dysautonomia is Raynaud’s Syndrome which leaves peoples’ feet and hands feeling numb or freezing cold due to poor (or truly just garbage) blood flow. So if your friend is constantly rubbing their hands together complaining that they’re freezing, this is your time to shine as a thoughtful gift giver.

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Lap Desk

Some people with dysautonomia are bed bound. And even the ones who are not bed bound still tend to spend a lot of time in bed or lying flat on their backs because they’re least symptomatic that way.

All of us who have used laptops are familiar with how quickly they go from computers to searing hot irons of white hot burning pain without proper ventilation when sitting on your legs which is why a lap desk is necessary to use a laptop. They’re also great for setting up pills in your room, doing homework and coloring in coloring books (a perennial favorite of humans everywhere.)

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Aromatherapy Diffuser & Drops

Essential oils are tricky. There are some companies trying to suggest that their blend of juniperberrycitronellaspruceetcetera is going to help me forgive people if I rub it on pulse points and heart. But I do know for a fact that I feel a little calmer when I take a deep breath and inhale peppermint very deeply.

So with that in mind, that I’m not suggesting that grapefruitpeppermintcinnamongingerspice in water will cure dysautonomia, I’ve heard some nice things about diffusers—if nothing else that they make your loved one’s house smell amazing and that’s a nice gift to give.

Plus, I found a diffuser that looks like a WHALE. If that doesn’t excite you, nothing will.

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Headache Essential Oil Roller & Cream

So another thing about aromatherapy. These things (an essential oil rollerball and headache cream) will not make headaches go away. But they help so much and are as important to my routine of treating headaches as ibuprofen and drinking lots of water or consuming caffeine to fight off a headache.

I’ve become a bit of an evangelist about these two products (I don’t get any kickbacks from them, but I’d love to), and while it might seem weird to give as a Christmas gift, I can guarantee you that even though these are things I buy maybe once a year (because yes, they last that long!), I would also love to receive them. They cool your skin on contact and help ease the tension you feel during headaches and migraines. I love them and maybe you should buy a couple for yourself, too.

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Miscellaneous dysautonomia themed gifts

And some things I found online that just looked cool

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Did I miss anything awesome dysautonomia themed gifts this year? What’s on your wish list or shopping list? Share in the comments!

I’m grateful for fuzzy feelings on Thanksgiving

Thanksgiving turkey

Hey, hey, hey!

I have fallen off the face of the earth in regards to this blog, but now is the perfect time to come back and write the most basic of blog posts, the “what I’m thankful for” post. And also, it’s good to have these things thought out before it’s my turn to say what I’m thankful for at the dinner table.

I can get very cranky, (blame it on the chronic pain), I generally employ an attitude of “ugh, well at least it’s not THIS” instead of “oh hooray, this happened!” in terms of optimism—but my mom did raise me to go over my favorite things at the end of the day. We used to keep a family journal of our Favorite Part of the Day when my brother and I were kids, and now it’s more of a nightly meditative ritual for me before I fall asleep and a yearly “OK, these things are good and don’t suck” inventory around the holidays.

So here we go—these are my happy, grateful or non-sucky things that I’m grateful for this Thanksgiving and this holiday season and most days.

Group chats and Skype sessions

I became a champion of long distance friendships in middle school and keeping in touch is a helluva lot easier which is great, since I keep missing the people I love more and more and more.

I love group chats, I love the fact that I can almost hear my friends’ voices in their deliberate choice of capitalization and use of emojis.

I love Skype, I love that my friends and I can eat dinner together in our rooms on weeknights in our sweats and hair piled on the tops of our heads and do BuzzFeed quizzes to verify which quiz is totally rigged and which one is, indeed, scientifically accurate.

Doctors who are generous with their time and resources

Overly compassionate doctors are hard to come by. Probably because I found all of them and I’m hoarding them up from the rest of you. SUCKERRRRS.

I really hope I don’t jinx anything, but I’m outrageously happy with my team of doctors. Several of them have gone far and beyond their call of duty in getting me the treatment I need and I couldn’t be more grateful for them not only as doctors but also as human beings.

Every service that lets me watch videos ever

I am drowning in an embarrassment of riches in entertainment. As a passionate lover of television programs, this is all I could ever want. I am never without something to watch, something to distract me, something to entertain me. AND something to suggest to others, thereby proving how fancy and cultured I am.

I can’t tell you how big a difference good entertainment makes when you’re sick, when your body feels like it’s falling apart. When your mind at least stops hurting along with it, flares don’t last nearly as long.

My friends

I’m grateful for all of my friends, their time, their faces, their existence.

But ohmygosh my heart bursts and grows a million billion sizes when I’m with a friend of mine and we’re out and about then they ask, “hey, do you need to take a minute to sit down?” or we’re planning something and they’re choosing a location and say something like, “oh, this place will be fun, there’s tons of seating!”

It means the world, I feel like the whole of me is remembered and accepted, and it’s sweet. It’s thoughtful. It’s important. It’s everything. It’s a moment I want to document and package in a Hallmark card sell to people at an extremely high markup because it would definitely sell. Because that’s the spirit of Thanksgiving.

My family

The most classic of things to be grateful for. But I’m so grateful to be born into a family whose empathy and experiences allow them very often to understand what I’m going through, or at least provide them the patience to give me time to deal with my plethora of problems. And if it’s all a ruse and they really don’t feel that way, then they’re damn good actors, and I’m grateful for that.

The basics

Safe home. Clean water. Food to eat. Necessary meds to take. Health insurance. Comfy bed. The daily essentials that millions live without that for whatever reason I’m lucky enough to have every day.

Progress

It’s slow. And I don’t always see it, but the people around me remind me of it. And it’s happening.

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I hope your Thanksgiving is lovely. I hope no one brings up the election, I hope everyone is on the same diet as you so there is no confusion as to whether the stuffing is GF or not, I hope if you’re a young adult, no one asks you what your life plans are and I hope that you get the the exact amount of dessert you desire.

Happy Turkey!