Maybe She Isn’t Gone. Maybe She’s Tired.

Lately I’ve been thinking a lot about who I used to be. Not in the nostalgic, “life was so much better back then” kind of way. Because honestly, parts of my past were a complete disaster. There are chapters I would never willingly relive. There are people I loved who hurt me deeply. There are choices I made because I was young, trusting, desperate to feel accepted, or simply doing the best I knew how to do at the time.

But there was also a version of me back then that I miss so much. She was loud. She was ridiculous. She danced in the kitchen for absolutely no reason. She sang at the top of her lungs in the car. She laughed until she couldn’t breathe. She made stupid jokes, acted goofy, said whatever popped into her head, and didn’t spend nearly as much time wondering how much energy something was going to cost her.

She was a lot. And I loved her.

I think one of the things that drew me toward certain people in my younger years was how easy it felt to be completely myself around them. I didn’t feel like I had to shrink. I didn’t have to monitor every word or wonder if I was being too loud, too weird, too excitable, too emotional, too much. They met crazy April and basically said, “Yep. We’ll take her.”

There is something incredibly intoxicating about feeling fully accepted when you have spent much of your life wondering whether you are too much for people. Unfortunately, some of those relationships eventually became painful in ways I never could have imagined. Being accepted by someone does not automatically mean they will treat your heart gently. Someone can know every strange little piece of you and still hurt you. They can make you feel safe enough to hand them everything and then turn around and use what they learned in ways that leave you rebuilding yourself for years.

But even knowing all of that, I sometimes find myself missing the version of me that existed before some of those experiences changed her.

My husband does not keep me from being myself. He doesn’t tell me to quiet down. He doesn’t tell me I’m embarrassing. He doesn’t make me feel like I’m not allowed to dance or sing or be goofy. He isn’t standing in the way of that person.

That isn’t what happened.

I think life happened.

My health happened.

Pain happened.

Exhaustion happened.

Appointments and procedures and medications and feeding tubes and surgeries and trying to hold a family together while my own body requires constant management happened.

Somewhere in all of that, being bubbly started requiring energy I didn’t have. Being spontaneous became complicated because I have to think about how far I’m going, how long I’ll be gone, what my body might do while I’m there, whether I have supplies, whether I’ll have somewhere to sit, whether my pain will tolerate it, whether my tube will leak, whether I’ll make it through without completely crashing afterward.

There used to be a time when dancing around the kitchen was just dancing around the kitchen. Now sometimes standing in the kitchen long enough to make dinner feels like an accomplishment.

There used to be a time when I could randomly decide to go somewhere and simply go. Now leaving the house can require calculations.

I don’t think people always understand what chronic illness takes from you because so much of it isn’t visible. Everyone understands losing physical ability. They understand missing work. They understand medical bills and surgeries and hospital stays.

But nobody really talks about losing pieces of your personality.

Nobody tells you that pain can make you quieter.

Nobody tells you that exhaustion can steal your silliness.

Nobody tells you that constantly managing your body can turn spontaneity into something that feels almost foreign.

Nobody tells you that eventually you might look in the mirror and realize you haven’t danced around your house in months.

And then you start wondering where she went.

Where did that girl go?

The one who was loud and ridiculous and always singing something. The one who could laugh until tears were streaming down her face. The one who had energy left over after simply existing.

Sometimes I worry that people who meet me now will never know her.

They will know this version of me. The tired one. The one constantly checking the calendar for another appointment. The one who says, “I’m hurting today.” The one who has to sit down. The one who cancels plans. The one who sometimes gets overstimulated and snappy because her nervous system has been screaming for hours. The one who has become so accustomed to rationing energy that she sometimes forgets what it felt like to spend it freely.

That makes me sad because I know that other April is still in here.

Every once in a while she sneaks out.

A song comes on and I catch myself singing louder than I have in months. Something makes me laugh so hard that for thirty seconds I forget what hurts. I say something completely ridiculous and watch my family look at me like, “There she is.”

For a moment, I feel like myself again.

Not the patient.

Not the mom managing everyone’s schedule.

Not the wife trying to keep a household functioning.

Not the woman counting appointments, medications, symptoms, and responsibilities.

Just April.

And man, I miss her.

I miss dancing. I miss singing. I miss being the goofball. I miss having enough energy to be annoying. I miss laughing without immediately noticing that my stomach hurts. I miss doing things simply because they sounded fun instead of deciding whether they are physically worth the aftermath. I miss being able to pour myself into the people I love and still have something left over for myself.

Maybe that is one of the hardest parts of chronic illness for me.

I haven’t completely lost who I am, but sometimes I feel like I have lost access to her.

And there is grief in that.

There is grief in loving your life while missing parts of yourself that existed in an entirely different one. There is grief in being incredibly thankful for the husband you have, the children you adore, the home you are building, and the life you prayed for while simultaneously aching for the energy and freedom you had years ago.

Those things are not contradictions.

I can love the woman I have become and still miss the girl I used to be.

I can be proud of everything this body has survived and still be angry about what illness has taken from it.

I can be grateful for my life and still mourn pieces of myself.

Maybe she isn’t gone.

Maybe she is tired.

Maybe she has been buried under years of surviving.

Maybe she doesn’t need me to go backward and become exactly who I was before everything happened.

Maybe she just needs me to start making little spaces where she feels safe enough to come back out.

Turn the music up.

Sing badly.

Dance for thirty seconds if thirty seconds is all my body can give me.

Laugh too loudly.

Say the ridiculous thing.

Let my daughters see the goofy version of their mom.

Let my husband see the woman underneath all the appointments and pain.

Stop waiting until I “feel better” to start looking for myself again.

Because maybe I’ll never be that exact girl again.

Honestly, I probably won’t.

She hadn’t lived through everything I have.

She didn’t know what I know now.

She hadn’t survived what I’ve survived.

But maybe I don’t need her back exactly as she was.

Maybe I just want to take the best pieces of her with me.

Her laughter.

Her weirdness.

Her softness.

Her ability to be completely herself.

Her refusal to apologize for taking up space.

I miss her terribly.

But I think she’s still here.

And maybe, little by little, I can teach this tired body how to let her dance again.

#MomWithATube