27 Aspects of Chiari Malformation I'm Learning to Live With

On November 27, 2014, I began my journey with chronic illness. When I first got sick, pain was a challenge to overcome. Constant illness was something to be fought and won. I received my diagnosis of Chiari malformation a year and a half ago and my life has changed drastically since then. Pain is still an inconvenience, but it is survivable. If I were to spend every single day in a battle against my body, there would be no time left for living. So instead, I’m learning to embrace the mess and keep on going amidst it. I’m learning that it’s OK to fall down sometimes and stay down, as long as it means I’ll be able to get up tomorrow.

Here are 27 things I’ve learned to live with every day:

1. Gagging is not just a sign that you’re about to throw up – it may just be a casual reaction to brushing your teeth.

2. My body is covered in bruises because I walk into everything. I suspect everything below my eye height just wants to touch me.

3. If you can lean your head to the side and touch your ear to your shoulder, I think you might be an alien. My muscles — while flexible almost everywhere else — hold my head like it is a prized artifact in some Indiana Jones movie.

4. Swallowing a pill for nausea (or pain, or anything else) is usually what makes my body recoil and vomit. Anyone who can get an Advil down without tossing it back up with some bile deserves a round of applause.

5. Having my period is literal hell. It’s like having every symptom on hyper mode, plus hoards of dizziness, and let’s toss in a bit of blood to make it interesting and then try to function for two weeks (it’s not just period week — we have to include the pre- and post-week) because you don’t want to be “that girl.”

6. I think my legs disappear when I’m not looking at them. Seriously — I can’t feel them, I can’t tell you where they’re landing, but somehow I’m still moving.

7. A headache is an everyday, all-day thing. The pain levels of my headaches are the only thing that changes. (Why is that so surprising to some people?)

8. Trying to work out is like asking to be punched in the face repeatedly. (But major shout-out to my awesome ballet teacher who only lets me be punched lightly so I can still feel like the normal human being I was before.)

9. I don’t even register nausea anymore until it’s impossible to ignore because *ding* it’s always there.

10. Doctors always want me to walk a straight line and stand on one foot. (And they don’t read just their test when I tell them I was a ballerina before I got sick.)

11. My purse is a pharmacy of drugs I may need to survive from moment to moment. Seriously, anything you could ever want, I got it.

12. Ninety percent of people will ask me why I’m wearing sunglasses inside when they see my prescription tinted glasses – the ones that are specifically designed to block out some of the light that causes me pain and limit the severity of my daily headaches. And when I tell them they’re prescription, 75 percent of those people will laugh and suggest I forgot my “regular glasses” at home. (It is always, always better to tell people I have laser vision.)

13. Other spoonies and chronically fabulous human beings are instantly my new best friends, regardless of their conditions. Because normal people just don’t understand in the same way.

14. I drop everything. Everything. Probably because…

15. …I can’t feel my hands at various points throughout the day. (Typing this has involved a ton of backspacing to correct all the fumbles.)

16. Sitting up sucks. And it’s painful. I don’t know why all chairs don’t have built-in neck pillows. If you want to hang out, we are either going to spend the day lying down or we are going to exclusively stand.

17. My life will forever be divided into two parts: before I got sick and after I got sick. To the human beings who were in the before and have stuck around for the after…you are the best of the best.

18. I will never again expect a doctor to know anything about my condition beyond what they’ve read in a book. And I will never assume they’ve seen another patient with the same condition.

19. Good days are a blessing not to be taken for granted. Bad days are a chance to stop and think about the good days that are just around the corner.

20. Some people will never understand what I’m going through, and trying to explain it to them is just exhausting for the both of us. It’s OK to leave some people out of the loop sometimes when my illness isn’t something they can handle – it’s nobody’s fault when that’s the case.

21. Spending the day on message boards and reading all the information I can gather is almost always a recipe for disaster, but sometimes it’s necessary. If I’m not armed and ready, who will be when it’s time to fight?

22. My mother is literally my white knight. She is the one who holds onto me when I can’t walk, who undresses me when I can’t move, who tucks me into bed in absolute darkness when I can’t function for a minute more. I wouldn’t get through the tough stuff without her. (That’s not new since getting sick, but it’s the truth.)

23. Bedtimes are necessary. As a teenager, I reveled in the adultness I had and avoided sleeping at all costs. I know now that going to bed at 9 p.m. is a small thing if it means I can make it through the whole next day without needing to stop for a nap… or two.

24. Showering is a privilege and stinky people shouldn’t be turned away from. Embrace my sweat stank and greasy hair! (Because sometimes it is too much to stand in hot water and that’s OK.)

25. Netflix is my new best friend – because everyone else is at work on the days I can’t get out of bed.

26. Nobody can pronounce Chiari without five to 10 minutes of coaching and they will never, ever guess how to spell it.

27. Every day is a new beginning – it has to be.

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