Unfiltered, 7:00-ish a.m.
This is the part of being sick nobody sees. It’s also the part of me I never show.
While sitting on my toilet, covered by a blanket with the heater on me in the middle of a Florida summer throwing up into a trash can, expelling undigested food from yesterday through cold sweats and fierce pain, I hear the voice of my cousin David telling me recently the bravest thing I could do is show what being sick is really like, because maybe then other people who are sick wouldn’t feel alone. Maybe people who have never experienced “sick” could understand it, and maybe then we could work towards a better future.
So here it is. This is the me behind “I’m fine.” This is what living with a disease (or multiple diseases in my case) that are trying to kill you is really like. This is why I try to never make plans before 2:00 p.m. This is why I missed all the LBL breakfast meetings this year. This is why I missed your show, or rescheduled, or cancelled at the last minute. This is my reality. This is what happens behind closed doors. This is what it’s like to be sick.
A side note – “I’m fine” doesn’t mean I (or any chronically ill person) is suddenly not sick. If we say I’m fine it means “I am fine enough to be where I am doing what I am and I don’t want to talk about my sick parts. It’s an invitation to be present in the now and not dwell in the before.
Today, at least right now, I’m not fine.
Today I woke up with intense pain in my left leg, hip and foot. When I say intense pain, I mean the kind of pain that feels like the insides of your bones are being chewed on by little monsters with sharp teeth. Having pain is not really in itself something I consider as a sick thing anymore. I’ve been friends with pain so long that for me, it’s just a side effect of living. I wake up with pain of some degree every day. Today the pain actually woke me up. That also isn’t that unusual. In fact, this kind of pain is so usual that despite it, I woke up feeling OK. I hugged my dogs and human. My lovely fiancé made me coffee as he does every morning. I skimmed through Patreon and read Amanda Palmer’s latest blog. I thought about my day ahead and at that moment felt like I would be able to get through most of my original plans.
And then, Sick came calling.
Out of nowhere and yet back from somewhere because she is always lingering, Sick arrived. Because I am used to Sick showing up without an invite, I am always prepared for her visit. I sleep with a bag of medicine to offer Sick like a refreshment when she shows up. She is always hungry. I feed her pain pills, steroids, zofran, seizure meds, ice chips and all sorts of other goodies like a create your own tapas tray customized to whatever her delight is today. I try to bargain with her. I offer Sprite and soft pillows. Sick is often cold, so I keep a sweater with me at all times and dress in layers. I keep a heater and blanket in my bathroom to keep her warm. I bargain again, “You’re warm now Sick, and you’ve been fed all my best pills. I’ve given you my best pillows and cancelled my morning. I know you are tired, so can we call truce if I let you sleep?” Sick will never respond right away.
When Sick is present, my entire existence becomes about the comfort of Sick. I stand a passenger in myself, hoping she doesn’t destroy too much and watching helplessly while she invades my home, my body, my life. Everything I do is a bribe to encourage her to go away. Sometimes Sick stays for days. Sometimes for weeks, and sometimes months or years. Often Sick stops by for a few hours to feast on organs and steal some strength, leaving just as suddenly as she came. I know she is never far away though.
One of the hardest things about being chronically ill is introducing Sick to people around you without pushing them away. Sick is very private and possessive, and honestly, I don’t really want to tell you about how I sat on my toilet covered in a blanket vomiting and expelling food after waking up with crushing pain, but I don’t want you to be mad at me for cancelling plans again either. I don’t ever want to sleep for 16 hours in a row and miss your baby shower or birthday party, but it isn’t something I get to decide; and so, I would like for you to understand.
Being chronically ill and living with incurable disease strips you bare. I am so much more than my illness, but living through today takes priority over everything and sometimes just today takes all the energy I have and then some I borrow from tomorrow. Sometimes it takes that much to live through this hour.
When I see people out, I often hear some version of “Well, you look good.” Yeah, well, you didn’t see me throw up on my shirt and change my clothes twice because I had expelled my body onto myself uncontrollably from both sides earlier. You didn’t see me shivering in a hot shower with purple toes and fingers trying to get the blood to flow to my appendages. You didn’t see me wake up disoriented in a cold sweat when my sugar and blood pressure dropped at the same time. You didn’t see me last night when in the middle of walking my legs stopped receiving messages from my brain and I stood in one place willing myself to move. You didn’t see me when my lungs filled with fluid and I sat down where I was and my fiancé came running with the medicine. You didn’t see him carry me to the couch and work me through an Addison’s episode waiting patiently for me to come around again. You don’t know that I woke up four hours early to put preparation H on my swollen eyelids, clear my stomach of vomit, take extra lasix to pee out the fluid trapped in my swollen feet, peroxide brush the thrush from my mouth, oil my dislocated joints with medicine and heat, take a basket full of pills to make my body work enough to get by and cover all that up with carefully layered makeup and specific layered clothing that seems eclectic and fun to you, but really is just a colorful way to keep myself warm just to make it here to spend this hour with you. And how could you know? I’ve never told you. I’ve only said I’m fine or not said anything. The silence is deafening to me.
I don’t want you to see any of that, so I accept your compliment as a compliment and disregard the question mark. I talk animatedly about things and listen with true interest. When we part and I awkwardly fumble over saying goodbye, I try not to listen to Sick telling me not to love you too much because I belong to her. Loving people when Sick is around can crush you both.
What you also don’t see is how after that hour or two with you when I looked well, I am completely drained. I go home with the kind of fatigue that only someone with chronic illness could understand. I don’t just need sleep or a better diet. I need a new body because mine is giving out. Over time I have traded broken parts for new ones and gotten adjustments to this or that. I’m a like an antique car that is really beautiful when it’s working and really expensive and irritating when it’s not. And like that car, I am always needing or about to need a repair that isn’t in the budget.
Today, well, right now really, because I’m still hoping to get an afternoon out of today, I am not fine. Today I woke up in bone crushing pain and ran to the bathroom suddenly to vomit in a trash can while expelling yesterday’s undigested food from my other end and shivering under a blanket in a cold sweat in front of a heater in the middle of July in Florida.
Today I am unfiltered. This is my life. I’m not even going to edit this post and try to make it wittier or look for grammatical errors because I’m too fucking tired and this is my reality. I’m not going to try to take a more pleasant picture of me sick either, because Sick isn’t pleasant.
My love just pulled in with my new heating pad, my birthday present of choice, and I’m going to try to bribe Sick to hit the road. Sick was kind enough to leave my hands unfurled today so that through my stomach pain while lying under blankets on the couch I could write my truth. So that maybe my silence wouldn’t keep feeding Sick.
I hope you hear me.
Sick keeps me in fear of talking about her. I am afraid that by sharing my truth about my relationship with Sick, you will love me less because fear of losing me will encourage that. I am afraid by sharing my truth you’ll be disgusted that I keep a blanket in the bathroom. I am afraid by sharing my truth you will stop inviting me out because now you know that underneath Fine I am not fine, and Sick is always going to trump your invite if she so desires. I am afraid that if I keep sharing my truth I will disappear and all you will see is Sick in my place. I am afraid if I share my truth, you will also see that Sick is friends with Dying and both of them are in my life whispering to me taking my attention and time from you. I am afraid if I share my truth you will see that I feed Sick because when she leaves for good it’s because her friend Dying took over and their friend Death will be near. I am afraid sharing my truth will be too much and you will go silent because Hallmark didn’t make a greeting card for this.
I am afraid if I don’t share my truth though, “I’m fine” will be swallowed by Sick far sooner. Mostly, I am afraid if I don’t introduce you to Sick that time will run out, and space between us will grow until Dying takes over and Death is down the road.
So here is my truth, gross and bare. My truth is my weapon against Sick. The more I speak my truth, the more space opens for Love and the less room Sick has to inhabit. Love is the fuel my body depends on to fight her. Love has pieced me back together more than once. Love is friends with Hope, and Hope reminds me of his friend Miracle who has come around before and maybe will again. Love and Hope are also friends with Joy and when Hope and Joy accompany Love, Sick takes smaller bites and I feel less Pain and Fear. Love is warmer than Sick, Hope is bigger than Fear, and Joy is stronger than Pain.
This is my truth about Sick, but I want the rest of my story to be about Love, and Hope, and Joy, and you and me and us. And maybe with that kind of story, Miracle might just stop by.
This post originally appeared on Upcycled Jane.
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