Love, Butterflies, and Ginger Ale.

There are certain things in life you don’t appreciate fully when you’re young. Like taking naps, or having a spring break. Or your relationship with your grandparents.

I was very close to my Gramma as a little kid–– she babysat us often, and I remember doing puzzles with her, or taking the bus to the mall (she never, ever drove), or watching soaps in her living room. I remember playing rummy with cards that had baby zoo animals on them, and that she always had snacks we liked at her apartment. I remember that she had a popcorn ceiling–– something I didn’t have a name for until many years later, but that I always just associated with Gramma’s house.

She liked butterflies, and anything made of pewter, and reading, and she really loved Taco Bell, which in retrospect is hilarious for its incongruity. And she was sick, pretty much always. Not in the alarming way most people’s grandparents are sick, where it signifies that death is coming–– the chronic kind, where most of my childhood was spent in the back of my mom’s van, chatting with her while we drove her to doctor’s appointments.

I was young when she developed dementia, and while she technically lived well into my college years, all of my viscerally happy memories of her are squeezed into my childhood. I was diagnosed with Crohn’s disease when I was 17, long after her mind was already fairly out of sorts. And now, at 24, when a flare has taken me into the territory of truly, chronically sick person, I find myself missing the relationship we could have had now that I am an adult.

When you’re sick, you seek out people who might best understand. It’s not anyone’s fault if they can’t understand–– in fact, it’s great news for your loved ones if they can’t fully understand. It means they’re healthy, which is all I want for the people in my life. But sometimes, when symptoms are bad and you need a commiserating ear, another chronically ill person is the best possible option. Especially when that person is family.

I know if my Gramma were around, we could sit around and watch TV, and I wouldn’t feel bad at all bitching to her about how my steroid taper is making my hips hurt so bad that I can’t sleep. She would probably tell me about her own joint pain, and messed up sleep schedule, and how getting from point A to point B leaves her winded. We would probably make a joke of it and drink some ginger ale and then she’d force me to take home a stuffed animal she had in her apartment.

But even though she’s not around, I feel like I can learn about living with sickness from her even in retrospect. While she definitely didn’t live life mistake-free, she did a lot of things I can take away for myself. She threw her energy into loving her grandkids. She made us feel special when I’m sure she wasn’t feeling that way herself. She read a lot, and tried to keep her mind up even when it was fighting against her–– the nurses in her assisted living facility had to repeatedly clean out her room because she was hoarding books, a fact about her last years that I love a lot.

So on days like today–– her birthday–– I will get my own struggles together and take away the things she would have wanted me to. And I will also drink a ginger ale in her honor.

Friends With (Medical) Benefits

When you’re chronically ill, it’s easy to get caught up in your own stuff. When you spend most of your days in some level of pain and discomfort, it’s easy to think you’re the only one struggling. But lately I’ve been thinking more about how my struggles with Crohn’s affect the people around me, and the ways caring about a sick person can make you feel kind of helpless.

While having a chronic illness is definitely a huge daily challenge, I can also easily see the challenge that comes from seeing someone you love sick with no light at the end of the tunnel. That’s why I don’t get offended (or at least I try not to) when people ask if I’m better. While I’ve come to terms with the fact that I will never be “better” by traditional standards, I can’t necessarily expect my loved ones to come to that acceptance so quickly.

Luckily I’ve been surrounded by some exceptionally supportive people. My friends and family prove to me every day that even if not everybody “gets it,” I am at the very least blessed with people who care enough to try. I could easily write a novel about the many ways in which these people have helped me, and I hope I tell them enough how appreciative I am of them.

Kelsey (front and center) has been my best friend since I was 10, and she does  things like having her whole PA class wear purple for World IBD Day because she is a better friend than any human deserves.

So for anyone with a chronically ill person in their life, here’s the best advice I can give you on how to be a good friend to a sick person, as evidenced so flawlessly by my wonderful best friends.

Listen up. Honestly, the biggest thing you can do is provide a commiserating ear. One of the biggest issues I deal with in terms of my illness is guilt–– guilt that I’m bothering the people I love with my complaints about my symptoms. But when you’re going through a patch of bad health, new symptoms can seem like they’re popping up every day, and it gets incredibly lonely if you have no one to vent to. Luckily, I have a few friends who I know I can text no matter what with unsolicited complaints such as “My joint pain is making it hard to eat my cereal. Send help.”

Don’t Question Limitations. Listen–– people with chronic illnesses probably already feel guilty about the various accommodations they need. So if they tell you they can’t spend long amounts of time out in the heat, or that they need a certain amount of rest between activities, don’t question them or pressure them to push through.

Be a cheering up squad. People with chronic illnesses often suffer from depression, because having a chronic illness sucks. It isolates you and makes you feel like you aren’t in control of your own body or life. I’m very good at hiding my own bouts of sadness because I don’t want to burden anyone. That being said, it means the world when a friend sees through the facade and realizes I’m in need of some encouragement–– whether that means a care package from my mom or a nice note (I adore snail mail.) My best friend Sarah recently brought me back a stuffed Baymax from Disney World, and I was so freaking touched to have my own personal healthcare companion that I pretty much tear up every time I look at him.

Not only do I have my own Baymax friend, but I have evidence of his adventures at Disney!

Celebrate small victories. For the average person, going on a walk or staying up past 10 isn’t an accomplishment. But for a chronically ill person, these little things can be huge. I recently got the okay from my doctor to taper off my steroids, and my best friend Kelsey has texted me every. single. day. To wish me a happy taper day 5, or 7, or what have you. It means the world to know that someone cares enough to check in, and also that someone else gets how exciting this seemingly small step is for me.

If you’re grossed out, don’t show it. I have Crohn’s disease. Gross stuff happens. A good week for me during this flare involves not having internal bleeding. There are plenty of people in my life that I have to lie to in order to spare them from the unfortunate GI symptoms that are my daily life. You know who I don’t have to do that with? My best friends. If they ask me to hang out and I can’t because of some strategically gross Crohn’s symptoms, I now send them this video and no more questions are asked.

Show up. The amount of friends and family who came out to my CCFA walk was overwhelming and lovely. The amount of friends who have given up a Saturday night to watch movies with me on my couch until I fall asleep at 8 PM is heartwarming. I’m of the opinion that bar-hopping friends come and go, but the people who will hang out with you when you aren’t very fun are forever.

So if you’re the friend or family member of someone with a chronic illness, know that we love you. We love you when you get it, we love you when you don’t exactly get it, and we even love you when pain-induced insomnia makes us cranky jerks. So thanks for being extra kind in a world that needs it. And to my sister–– thanks for the cookies.

Love and Light and Purple Tutus

Meet Lizzie, the most fabulous girl at all of Take Steps Chicago

Sometimes the world can seem like an irredeemably sad place. When surrounded by hate and injustice, after I cry and get angry, I like to take a turn to focus on the small pieces of my life that bring love and light to the world.

It’s a concept I learned in therapy to cope with the day-to-day mental struggles of chronic illness–– on any given day, you can list three good things. On some days, they might be huge happies: you got a promotion, you welcomed a new baby into the family, you finally found a new medication that works for you. On other days, it can be much harder to think of three positives. But I find if I dig a little, I can always find something: the bus was there right when I got to the stop. My favorite song came on the radio twice today. I ate a really solid bagel sandwich.

Listing things that are good may sound silly–– believe me, I’ve had many friends and family goodnaturedly roll their eyes at me when I push them to find three things to be happy about when they’re having a bad day. But as it turns out, life is actually made up of these little, seemingly trivial things. Sure, promotions and babies are great–– but if you live your whole life seeking big things to sustain your happiness, it will probably continue to elude you.

So here are my three happies for today:

1. I discovered a really great new dog Instagram account.
2. I got to chat with my sister for a bit.
3. I had a really great burst of creative inspiration.

See? Nothing life altering. I didn’t cure cancer or win a million dollars, but listing out the little things is an immediate mood-booster, and a quick way to find the good in a day that maybe seemed like actual garbage before. And when that doesn’t work, I go back to some old “good days.” This past weekend was the best weekend I’ve had in a long time–– not only did I go buy stacks on stacks on stacks of used books at the Printer’s Row Lit Fest, but Saturday was finally Chicago’s CCFA walk.

I’d been looking forward to the day for months now, as I’m sure anyone who follows me on social media can attest, but it truly exceeded my greatest expectations. Over 20 of my closest friends and family showed up to walk for me, from my parents to my cousins to my co-workers to my childhood best friends and everyone in between. I’ve never felt so much love in one steaming-hot city park.

My cousins even decked out their adorable babies in homemade team shirts, a move that almost brought me to tears I was so excited and heart-warmed. I might be biased, but it probably made my team the winner in the cuteness category.

We raised over $1,700 for CCFA thanks to almost 40 amazing donors who all came together to support a girl with some malfunctioning intestines, and I can’t thank everyone enough. I’ve never been so excited to have so many thank you notes to write. I even got a chance to be interviewed about my experience with Crohn’s in an effort improve life for other patients, so in addition to raising hella cash, we also raised a lot of awareness.

So to the CCFA employees and volunteers who helped out to make the walk happen to the donors who consistently made my day to the friends who basically walked a 5k in 100 degree heat–– THANK YOU. YOU ARE THE LOVE AND LIGHT THIS WORLD NEEDS.