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.
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.
Cancer doesn’t happen to bad people.
I have never heard a story of cancer happening to someone who deserved it, like to someone who burned down hospitals and stole millions of dollars from charities. Cancer always happens to good people. The people who take care of others. The people who clean up the messes. The people who loved the most, who sacrificed everything, who gave so much of themselves, only to have more taken by disease.
My family always thought we’d be exempt from cancer. Not because we’re bad people, but because we’ve dealt with so many other chronic health problems and cancer isn’t as widespread in our family as it is in others. My dad had a melanoma run-in but had it taken care of quickly—we thought that was our designated family cancer scare.
This May, my mom was diagnosed with endometrial cancer. Even a month later and days before surgery, we don’t know exactly how widespread it is because it’s all tied to a poorly performed surgery 12 years ago. (My parents and the surgeons know more but I asked them to spare me the details, I can’t handle knowing everything.)
I’m still struggling with how to comprehend the news because put simply, my mom is my everything.
mom & me in our happiest place, at The Colbert Report
My mom is beloved by everyone.
At her graduation from Georgetown to get her Ph.D., she was so excited that she hugged every single person on the stage, including the sign language interpreter, and then danced off stage. She was the only person to get applause (and laughter) from the entire arena.
My mom is the life of the party. And if there isn’t a party to be had, she’s happy to sit around and find something to laugh at. That’s all she wants in this life—is to laugh at something.
My mom is the type of mom that would pull my brother and me out of school to go see the first showings of the Star Wars prequels when they premiered. She’s the kind of professor who throws pizza parties at the end of the semester. She’s the kind of aunt that welcomes her nieces and nephews to live with her whenever they need a place in the area. She’s the kind of parent who wanted her kids to have dogs so despite being allergic, adopted golden retrievers for her kids and took Claritin. She’s the kind of wife whose husband laughs at every one of her jokes after 30+ years of marriage.
My mom is the kind of person who says “thank you” in the form of handwritten cards and candy. My mom is the type of person who starts dancing to whatever is playing on the radio, wherever she is, much to my chagrin sometimes. My mom is the type of person who can make friends while walking in from the parking lot. My mom has more Facebook friends than I do.
She’s the kind of mom who will go back to work, even when she isn’t healthy, so her kids can see whatever specialist they need to and go to any school they want to. She’s the kind of mom who will fight tooth and nail with her child’s school administration day and night until they agree to grant them the Section 504 they deserve, even if it takes three-and-a-half years. She’s the kind of mom who will go to 7-11 in the middle of the night to get popsicles when her kid has a fever and can’t sleep. She’s the kind of mom who has journals full of notes she takes at her kids’ doctors’ appointments over the years, she’s there for every single one of them.
She’s the kind of mom who can be her child’s best friend.
My mom is the kind of mom who is a safe space, no judgment ever, love always.
she’s the caregiver, the matriarch, the ringleader, the boss
She has been my primary caregiver for 23 years. (As well as the caregiver of my brother and my father.) And she’s damn good at it. She’s learned the ins and outs of every disease, disorder and syndrome I have. She’s tracked down the best specialists for me and has endeared herself to them so I get even better treatment. No one can say no to her.
However, anyone can be my caregiver. But only she can be my mom.
And because she’s so her, and such a mom, she does not want to relinquish her title of caregiver, even for a few days.
Even while she’s coping with cancer, while she’s preparing for surgery, she’s taking care of me. Checking in all the time. Making sure I’m OK, physically and emotionally. Letting me rant, which I tend to do a lot. Feeling my forehead to see if I’m too hot because there’s something wrong with the air conditioning. Making sure I’ve eaten and Shannon, did you really eat today or are just saying you did because you can’t remember?, and letting the dogs out so I don’t have to. Being present with me and making sure that I’m present, too.
I am so mixed with anger, helplessness and gratitude.
Anger that cancer is happening to my mom, a woman who gives so much of herself to everyone: her friends, her students, her family, especially her children.
Helplessness that there is nothing I can do besides sit by her side.
Gratitude that she has not changed, she is still my mom, she is still there for me in ways I can’t repay. That so many people love her the way she deserves and are expressing it in ways that help her feel strong. That she has good doctors she trusts and therefore I trust. That I have my own friends who are helping me feel less scared or at least more normal when I do feel scared.
There’s a chance that this surgery on Thursday can get rid of everything cancerous, and I pray to every deity that it does so she doesn’t have to endure any more of this stress and terror. All I want is for the person who has invested everything into my life and into my family to be safe, happy and healthy.
Update, July 7, 2016:
Mom had her surgery on June 23. It was complicated, it was difficult, but it went exactly as planned. There were no signs of “major cancer” but they removed everything and had to send it to lab for pathologies.
We went to her doctor for her post-op appointment and he said she was totally cancer free.
Best. News. Ever.
He told my mom that she really lucked out–he was so sure there was something there–but everything came back showing that she was in the clear. He said that she made his day because he finally got to give good news! And he rarely gets to give good news to patients.
Greatest day ever.
Thank you for love, for good feelings, for good vibes, for hope, for everything. I send all of them back, amplified times a million to people on similar journeys.
In one of my all time favorite pieces of The Colbert Report, Stephen goes on a journey to sell his portrait for megabucks at a New York art gallery. He goes the whole nine yards—he has it appraised by several art appraisers, he learns all about the art scene from the art curator Simon de Pury, he shmoozes it up at the pre-auction cocktail party, and he crashes the actual auction.
The whole time, he’s happy as a clam (and a little tipsy at the cocktail party) and keeps sing-songing variations of “it’s happening!”
After it aired, I immediately adopted the entire series of phrases. I was soon greeting people by calling out, “is it happening?” or “there’s a happening happening!” every time I felt excited about something. This was occurring at a time when I was coming out of some darkness and finally seeing some light, relief. And it was my spring semester of my senior year of high school, things were very much happening. (Although they weren’t as spectacular as Stephen Colbert dancing to “Gin & Juice” with a Frenchman.)
Stephen & Simon de Pury jamming to Snoop Dog (The Colbert Report/Comedy Central)
Dysautonomia Awareness Month kicked ass all because of volunteers. (Pardon my French.)
Times Square under an assault of Dysautonomia Awareness (Dysautonomia International)
I burst into tears the day I saw that Nasdaq billboard in Times Square was lit up turquoise with the word dysautonomia plastered all over it.
Two years ago, I’d never heard of dysautonomia. My mom and I had trouble pronouncing it—her proclivity for other languages and their rules had her falling over syllables. And I couldn’t keep track of what letters went where. But we got it right pretty quickly.
Two years ago, as we were learning what this disorder was, we were also explaining it to my doctors. We were shopping for cardiologists who had also heard of it, who had heard of POTS. Some would say “no” and offer up a treatment plan, a treatment plan that was completely wrong for me.
Now? Things are different.
Today, I’m getting e-mails from my cousin at a conference for anesthesiology with pictures of poster presentations on POTS.
Today, my friend who works for a T-shirt design company is getting tons of custom orders for Dysautonomia Awareness shirts.
Today, my doctors are collaborating together on new projects. There’s a lot that they do know, and everything they don’t, they’re making plans together to figure out and to treat me in the process.
I recently got some potentially incredible news that my insurance company might be coming through for me on something big. I’m staying ridiculously cautious in my optimism, but this, like seeing the Nasdaq billboard lit up turquoise, was one of those “cry your eyes out, this is happening” moments.
I’ve been pretty fragile lately. My doctors have been wonderful, reminding me that expectations change when circumstances change. I felt like I wasn’t achieving anything and like I was cutting myself too much slack. I should just push harder, that’ll fix it, right? I wanted results, I wanted to see something happen.
But there are some times when pushing won’t fix it. There are some times when you have to pull back a little bit. A lot of people believe that you have to keep goinggoinggoing all the time to treat dysautonomia, but on the advice of my doctors, I’m pulling back just a little bit. I’m just going to keep going at a slower speed and see if I can make things happen that way.
So I’m working on being good to myself, and I’m working on those happenings.
And in the mean time, big things are happening for dysautonomia.
And that’s pretty freaking cool.
“Let’s make it happen!” (The Colbert Report/Comedy Central)
(Please, do yourself a favor and watch all three parts of Stephen’s quest to sell his portrait–it was for charity, after all: part one, part two, part three)
Birthdays are so tricky. They’re supposed to be the best day of the year—where people celebrate you for just being—and you hopefully get showered with gifts and cakes.
But unfortunately, that means it’s a day filled with expectations that everything has to go well. And with chronic illnesses in play, that’s hard to guarantee.
I finally had the “It’s My Party and I Can Cry If I Want To” Epiphany when I turned 20. I had a ton of great events on the docket—I got to see one of my best friends for lunch in Williamsburg on my to Virginia Beach with my family. Unfortunately, that day I was hit by mood swings which turned into anxiety and I kept panicking, “no! I can’t be sad on my birthday!”
I kept trying the “fake it ’til you make it” approach at having the Best Birthday Ever but once I started getting a tension headache, it got to be too much.
I spent that birthday morose and quiet, upset that I was losing to my body. I was supposed to be happy and perky, but instead I was busy fighting my own feelings and the throbbing in my head.
And then, I finally remembered that I’m the birthday princess, and I get to do whatever I want. I call the shots. This could finally be the year of the grumpy, quiet birthday—something I’d never tried before.
Honestly, it kind of sucked to give in to the mood swings for a while. It sucked to stop fighting to keep them at bay and let them take over for a while. But it saved me a lot of energy. Having bad feelings is exhausting, but battling them when they’re in army gear is so much worse.
Birthdays since the great epiphany have been better informed—for the emotional side, don’t fight your feelings, they’ll probably pass a least a little bit when you have your birthday cake/cookie/brownie/ice cream/whatever. But the physical symptoms are harder to self-talk away, but you can certainly treat them the same way. And on your birthday, no one can truly begrudge you some full-scale drama queen “woe is me! pain on my birthday!” because guess what, you earned it. If that’s your personality, if that’s your style, go for it.
My big day this year started off great—my present to myself was going to be a Treat Yo Self day: sleep in, no exercise, no school work. Mom also surprised me with treats from Mom’s Apple Pie Company. I went through my usual routine but started feeling symptomatic and that led to feeling some heartbreak. I got nervous that it would continue throughout the day—what if I didn’t feel well enough to go out to dinner with my family that night? Thankfully, there’s nothing like fear of feeling unwell to get you to chug water and get your salt.
I rested, got such nice messages from friends (and my mom’s 4 billion Facebook friends), and TWO CAKES!!! And aside from the several pictures my mom insisted we take at dinner, I didn’t force any inauthentic feelings. So yes, I felt bummed and symptomatic for a while. But it was my birthday and tons of people texted and wrote on my wall and liked my mom’s photos of me to tell me they loved me, so there was plenty of time to feel important, too.
This was written last night at 1:30 a.m.
Erin, one of my very best friends in the world, came from Philadelphia to spend my pre-birthday weekend with me. We got breakfast–I had gigantic fluffy pancakes and Erin got a delicious looking omelette. We went shopping and discovered a crazy antique shop. (If you’re in the market for for some old political campaign memorabilia, I’ve got a store for you.) Then, we took on the task of a trip to Target (the seasonal section is having an identity crisis right now–a battle between Halloween and Christmas) and I thought I was going to lean over against a shelf of towels and fall asleep.
Every moment, standing upright, it was like I could feel gravity’s pull on every molecule in my body. -9.8 m/s^2, right? That’s the pull of gravity on Earth? Even though I remember next to nothing from Physics, next to nothing about the practical application of it, all I could think of was, “Yep. -9.8 m/s^2 of gravity is pulling on all of me, but it feels like more.” But at the same time, I was enjoying myself. I loved being out of the house. I loved being with Erin. Maybe I could just ignore the gravity away, because there’s no way I was succumbing to it.
We reenergized with hot chocolate and a break at my house before venturing back out for the main event–seeing Hasan Minhaj (from The Daily Show) do stand-up in Arlington. I laughed loudly and shamelessly. It was absolutely spectacular.
We got home, exhausted and spent. It’s pretty validating seeing a non-POTSie tired from doing the same things you do.
But in the hours since, it feels like every muscle in my limbs has started aching. And not those dull, throbbing aches, it’s the sharp and constant aches. The ones that are loud. The ones that say, “Hey!!! We’re still here! You’ve done all of your easy fixes, but we’re not leaving!” And your only option is to get as comfortable as you can because you just have to ride it out.
These are the ones that make it difficult to sleep. These are the ones that the term “painsomnia” was invented for. (High five to the person who first coined it.) Instead of fighting against gravity like I was this afternoon, I’m fighting against muscles that ache, limbs that are fidgety, a head that hurts, and a heart that feels stressed. And there’s also confusion–because I had such a lovely day with pain that I endured–and now the pain feels like it’s too heavy. Gravity and heaviness wins this time, but at least I made it this long.
I’m going to try to rest now. Because no matter how much my arms and legs hurt, it doesn’t take away how good my pancakes were, how hilarious Hasan Minhaj was, and how good it is to have a friend come visit you for your birthday.