Independent Women, Pt. III

There are a lot of "hard parts" to being chronically ill. The kick to your finances is difficult to manage. The blow to your social life is mentally trying. Hell, physical pain is no picnic, either. (Mainly, though, I miss the ability to eat movie theater popcorn with a heart attack amount of butter.)

But one of the hardest parts for a lot of patients is the way being chronically ill can strip you of your independence.

I have always prided myself on being an independent person –– living on my own, taking care of myself, paying my own bills. Going to college where I didn't know anyone and once even attempting to move cross-country without so much as a friend. Not needing another person to take care of me has always seemed of paramount importance. That Destiny's Child wisdom really stuck with me, I guess. Whether that translates to being a strong, independent woman who don't need no man or just being a grown-up who doesn't need mom and dad footing the bill anymore, independence –– both emotionally and financially –– was always top goal for me.

I hear my healthy friends talking all the time about what adventure they'll go on next. How they'll quit their job to do some long term traveling, or what city they'll move to for their next chapter of adulting. There's a saying that goes "Health is a crown that the healthy wear, but only the sick can see it." The things that healthy folks take for granted –– like being able to pick up and go at any time –– are aspects of independence that sick people just don't have. And we see it. And we wish we had it. And we're jealous, even though jealous isn't always the coolest thing to admit to being.

While it's not impossible to do those adventurous things with a chronic illness, it's a hell of a lot harder. When you see just how bad your illness can get, and just how quickly your health can be taken from you, with little to no warning, you lose a little bit of that boldness. Traveling for a year turns into, "Well how will I get my monthly infusions when I'm in Laos?" And picking up to move to a new city where you don't know a soul goes from romantic and wanderlust-y to, " Who's going to be my emergency contact when I end up in the ER again?"

One of the biggest life-changers I've had to come to terms with since getting really sick is that I need help. Even when I don't want to need help. Sometimes I need my mom to drive me home from a colonoscopy, because they don't just let you hop on the CTA when you're fresh off anesthesia. Sometimes I need my best friend to drive me to the grocery store when a flare is severely fucking with my joints. Everybody needs somebody, sometimes, right?

When I was brand new to LA and barely knew a soul, I ended up in the hospital and supremely lucked out –– my dad just happened to be visiting that weekend.

And while needing people from time to time is a universal sentiment, chronically ill or not, it does make me occasionally mourn the badass life I might be living if I didn't need people in such a literal, immediate, and physically present sense. If I just needed emotional support from friends rather than literal caregivers. Maybe I would go teach English in South America for a year! Maybe I could risk a lapse in health insurance long enough to go be an unemployed, surfer-vagabond-guy in Australia for a bit! But as reality would have it I am here in Chicago, about an hour away from my childhood home, and trying to find other ways to assert that independence.

If chronic illness does anything, it makes you think outside the box.

It's okay to mourn the life you might've had. It's also okay to accept the life you do have. And I know in my soul I'm the same independent, adventurous girl I've always been –– now I just need to schedule those adventures around treatments.

May is IBD Awareness Month! (2017 Edition)

Happy IBD Awareness Month!

Or maybe “happy” seems like a slightly-off way to put it, as we would all be much happier if diseases such as these did not exist and we therefore did not have to be aware of them.

It is IBD Awareness Month!

Better.

Awareness months are a little weird, because you’re like 1 - why do I need to be aware of this? There are so many things to be aware of. And 2 - How do I help and become more aware? I’m busy and I have like three episodes of The Handmaid’s Tale to watch later.

Last year walk day was like 102 degrees and we still has a bunch of fun and braided each others' hair and ate tiny hummus packets

Luckily, I’m here to answer both! I operate on the belief that empathy is pretty much the most important quality that exists in the world. Without empathy for others we would all just run around doing whatever we want all the time and we’d be living in an IRL version of The Purge. Lack of empathy is how you get people like Paul Ryan existing out in the world.

And, to put it simply, awareness helps build empathy. You may have heard of a disease like Crohn’s disease in passing, or from one of those terrible commercials, but chronic diseases become a hell of a lot more real when you know someone who is affected and that person tells you their story. That’s why I’m here doing this whole thing –– sharing is hard, but if it helps educate people and bring a little bit more empathy into the world, I’m so incredibly down to take one for the team and share like crazy.

And now on to part 2 - how do you help? Well, if you’re a genius prodigy child, get to work on developing a cure, please. If you’re literally anyone else, I’m here to outline a few quick and easy ways you can help the cause. They will take like 5 minutes of your time, and you will feel good about having helped someone(s)! Like the nice warm feeling you get when you don’t let the elevator doors close on a stranger.

Action 1 - Talk to a patient

IBD affects a truly wacky number of people, but a lot of them don’t feel incredibly comfortable bringing it up in everyday conversation. Odds are you know someone with IBD, whether you realize you do or not. If you do, a quick, easy, and free way to observe the month is to reach out to that person and say hey. Ask about their health, their life, their new favorite binge watch. Chronic illness can be incredibly isolating, and having people out there who you know care about you goes miles in helping.

Action 2 - Buy a shirt!

Here comes some shameless self promotion, because I am who I am. From now until May 17th I’m running a t-shirt fundraiser with 50% of the proceeds being donated to my walk team, which directly benefits the CCFA. It’s a win-win for everyone because shirts are only $12, and you get to wear a badass design from a local artist while also helping colons. Click here to do the damn thing.

Action 3 - Wear purple on May 19th!

This is both easy and fun, because it doubles as your monthly memorial to Prince. May 19th is IBD Awareness Day, aka the pinnacle of the whole awareness month. Purple is the signifying color of choice, and if you wear it on May 19th and tag me in a selfie of you in your purple, I’ll donate a dollar to CCFA. And then you can walk around all day being like, “I’m wearing this color for charity,” and your friends and co-workers will be forced to acknowledge that you are good and kind. Last year 40 people (and a few dogs!) participated.

Action 4 - Walk with me! (Or just send money!)

For a lot of patients (especially kids), the annual Crohn’s & Colitis walk is an event they look forward to all year. It’s got a super fun field day type vibe that reminds me of the happiest days of elementary school, and it brings patients and their loved ones together in a celebratory fashion that isn’t all about being sick. If you’re in Chicago on June 10th you can come walk with me and my friends and make ill-timed intestines jokes with us. If you can’t make it, send me your pocket change! I’m a competitive fundraiser and .83 cents of every dollar donated goes directly to really awesome things like researching much-needed cures and putting on events that increase patient quality of life.

The fact that you’re here, reading my blog, probably means you’re already way more aware than the average bear (or American voter.) Pat yourself on the back, buy yourself something pretty, and then do one of the things on this list. Me and my colon thank you.

I'm Done Begging The GOP To See Me as a Person.

Jokey is my default setting. I very much subscribe to Sara Benincasa’s notion that if you can laugh at the worst moments in your life, you can transcend them. Even when the going has gotten really tough, I’ve maintained a certain level of sarcastic detachment about it all.

There have been a few occasions in life where putting on the humor mask hasn’t worked for me. One of those times was on election night. Another one of those times was this afternoon.

I have a lot of problems with the current political administration. I abhor their treatment of immigrants, I am frightened by their attitudes towards women, I fundamentally reject their loose grasp of science. There’s one issue, though, that gets really personal for me, even more than all of the rest. That issue is healthcare.

I’ve been especially angry lately, because sick people like myself have a lot to worry about from day to day. We have short term worries, like whether or not our blood work will come back okay or how we’re going to pay for groceries and this month’s prescriptions. We have long term worries, like whether or not our disease will take away our ability to have kids, or whether the meds we’re on for one condition might end up causing another.

But for the 217 members of the House GOP who voted today to strip millions of people of their access to affordable healthcare, those worries are not enough. They want you to worry that you’ll lose your house paying for your sick kid’s procedures. They want you to worry that you’ll die because you can’t afford your medication. I don’t find it one bit dramatic to say that if this legislation passes through the senate, people will die. A lot of people will die. They want you to know that because you got sick, even if it was entirely random and out of your control, that you don’t deserve your life. And they want all of this because it will get them tax breaks and a pat on the back from a president who barely knows basic geography.

Making pre-existing conditions uninsurable is turning non-lethal diagnoses into death sentences. It’s keeping diabetics from affording insulin, asthmatics from paying for their inhalers, and autoimmune patients out of reach of life-saving biologics. It’s telling me, a fairly accomplished young woman who happens to have a disease, that my life matters less than tax cuts. It’s telling a 5 year-old with cancer that even when they beat the tumors, they’ll spend the rest of their lives battling to keep a roof over their heads because they hit their lifetime benefits cap before they were old enough to drive.

But as angry as all of this makes me, I think today, an overwhelming feeling over despair took the place of anger. I truly believed in the last few days that this wouldn’t happen, because at least a few of those 217 people who voted yes would realize that they were harming real people. But then they didn’t, and I sat at my desk watching a livestream of politicians cheering as they sent millions of families to bankruptcy and patients to their death beds.

I’ve never felt more dehumanized than I have by this administration. They’ve made it perfectly clear, from their votes to their celebratory, “we just ruined the life of sick kids!” beers, that people with illnesses and disabilities are not worthy of life. They’ve made me beg to be seen as a whole person, and even then, they told me “we disagree, you are not.” They’ve gone on TV spouting narratives that sick people are lazy, that we’ve done this to ourselves by not taking better care of our bodies, that paying to keep your fellow humans alive “isn’t their problem.” And no matter how many good people you know exist in the world, I don’t have a humor mask to hide the way it feels to be told by your country that you are sick, and you are therefore not worthy of the basic right to life.

Tomorrow I’m going to try to re-channel the anger, because that’s what we need right now –– anger that fuels action. I’ll send every Republican who voted “yes” a picture of my diseased intestines. I’ll knock on doors, and write strongly worded letters, and donate to 2018 campaigns. Because angry me really wants them to know that if they’re coming for my health, I’ll spend every last drop of energy I have coming for their jobs.