On chronic illness, facing mortality, and building a life with the health I have

Sometimes I sit on my porch and watch my children play.

They ride their skateboards and scooters, wander around with their friends, laugh, argue, and do the ordinary things children do when they’re busy growing up. I don’t always join them. Some days my body hurts too much, and sometimes sitting on the porch is about all the physical activity I have left in me.

But I’m there. I get to watch them become the people they’re becoming. I get to hear their laughter, listen to their stories, and be part of their everyday lives.

There was a time when I wasn’t sure I’d get to do any of that. I was so sick that I didn’t even realize how close I was to losing my life.

The Years I Barely Remember

During the pandemic, I was living in Kewanee, Illinois, with my children while my wife worked in Minnesota. I was desperately ill, although I didn’t yet have answers for much of what was happening to my body.

I couldn’t shower or dress without help. Making plans had become almost pointless because I had to cancel at least half the time. I was even dismissed from medical practices for missing appointments, despite being genuinely too sick to drive myself there. There was a terrible irony in being denied medical care because I was too ill to access it.

I slept almost constantly, waking long enough to eat something, use the bathroom, and go back to sleep. Days blurred together, and entire stretches of time disappeared from my memory.

For months, I heard gospel bluegrass music coming from my closet. I knew the music couldn’t actually be playing, but I heard it anyway. More troubling was the way my dreams began bleeding into reality. I’d wake up angry at people for things they’d done in dreams.

Then I’d argue with them about things that had never happened.

Painful sores covered my body, including my arms and face. They left dark marks that took years to fade. Some of those scars are still visible today.

I was responsible for my children while barely managing to care for myself. Looking back, I can see how much danger I was in. At the time, I mostly just slept.

The Day I Almost Didn’t Come Home

When my wife returned, she knew something was terribly wrong. I kept insisting it was just another migraine.

I’d experienced chronic migraines for years, sometimes lasting a week or longer. Feeling miserable had become so normal that I’d lost the ability to recognize how seriously ill I was.

She called my dad, who insisted she take me to the emergency room, even if that meant calling an ambulance.

I didn’t want an ambulance. We lived in an apartment with a lot of stairs, and I was embarrassed by the thought of emergency workers having to carry my large body down them.

Even while my life was in danger, I was worried about being the fat woman who couldn’t get herself out of her apartment.

So I walked to the car.

That’s the last thing I remember for four days.

I don’t remember arriving at the hospital in Kewanee, being transferred to an intensive care unit in the Quad Cities, or being intubated and placed on a ventilator. I know those things happened because other people told me afterward.

When my memories resume, I’m waking up in the ICU on BiPAP.

I’d gone into respiratory failure. Severe obstructive sleep apnea and complications involving multiple medications had contributed to a medical crisis that nearly killed me.

While I was unconscious, my wife was trying to hold everything together. My brother was out of town, she had no backup help, and our children were young. Pandemic restrictions meant they couldn’t visit me in the hospital, so she stayed with them in a nearby hotel, frightened and uncertain about whether I would recover.

I don’t remember those four missing days. She lived through every one of them.

By my last night in the hospital, I’d improved enough that I only needed BiPAP while sleeping. My wife brought the children to the hospital parking lot, where they stood outside my window.

We waved at each other through the glass.

The next day, when they came to bring me home, they brought balloons and flowers.

I remember those moments more clearly than almost anything else about that hospital stay. My children outside the window, then coming to take their mom home.

Deciding to Live Didn’t Make Me Well

When I came home, I knew I couldn’t keep living the way I had been. I’d come close to dying at forty years old, with young children who still needed their mom. I wanted to watch them grow up and have a future with my wife. I needed to get as healthy as I could, whatever that ultimately meant.

But deciding I wanted to live differently didn’t suddenly make me capable of doing it. I was still seriously ill, with symptoms nobody could fully explain, and I still needed help with ordinary activities.

As I continued trying to regain my health, my neurologist recognized that something larger was happening. He was treating my migraines, but he could see that my medical problems extended far beyond headaches.

He told my primary care doctor that someone needed to connect all the dots. Something bigger was at play, and he was worried about what might happen if nobody figured it out.

Then he referred me to a rheumatologist he knew personally, whose office was in the same building.

That doctor ordered extensive testing and began looking at my symptoms collectively rather than as unrelated problems. Over time, the diagnoses became more specific, and we began finding treatments that helped.

It took years of appointments, medication adjustments, and trial and error. Some treatments helped one condition while aggravating another. Some didn’t work at all. Gradually, though, I started getting pieces of my life back.

What If This Is as Good as It Gets?

Today, most of my medical conditions are better controlled than they’ve ever been.

Before Botox, I had migraines nearly every day, sometimes lasting a week or longer. Now I can go most of a twelve-week treatment cycle with only an occasional breakthrough migraine. My inflammatory conditions are better managed, my diabetes is controlled, and I sleep with BiPAP.

I’m significantly healthier than I was five years ago, but I’m not well.

I still live with pain, fatigue, inflammatory flares, and mobility limitations. Vertigo occasionally makes the room spin, and my skin sometimes develops painful sores despite treatment. I use mobility aids, and there are days when my body refuses to cooperate with my plans.

But I can make plans now and reasonably expect to keep many of them. I can participate in family life, pursue things that interest me, and decide how I want to spend much more of my time.

I’ve reached a point where I suspect I’m probably as close to remission as I’ll ever be.

Maybe another treatment will become available someday. Maybe medical science will find better ways to manage some of my conditions, and I’ll experience further improvements. I certainly hope so.

But what if this is my healthiest?

What if I always have pain, fatigue, mobility limitations, and occasional flares? Am I supposed to put everything I want to do on hold until those things disappear?

I spent years living a life almost entirely dictated by illness. I don’t want to spend the years I have left waiting for a level of health I may never achieve.

I’ve spent enough time waiting to get better.

Building a Life Around the Body I Have

I homeschool my children. Sometimes that happens at a table with books and supplies spread everywhere. Other times we’re on the couch, or I’m in bed with a heating pad while we discuss something they’re learning.

It’s still education. It’s still parenting. And I still get to participate in their lives.

I make art, draw on my iPad, and work with pens, markers, and paint. I write essays, research subjects that fascinate me, and turn my experiences into stories. I’m developing projects and building plans for a creative business.

Some projects take longer than I want, and some days are spent resting instead of creating. Sometimes I have to change my plans because my body can’t keep up. I’ve learned to leave room for those realities without abandoning the things I want to do.

I no longer measure the worth of a day entirely by how productive I’ve been or how much physical activity I’ve accomplished.

Sometimes the most meaningful thing I do is sit on the porch. I may not have the energy to join whatever the kids are doing, but I can listen when they come over to tell me something, offer encouragement, and share a laugh.

After coming so close to missing their childhoods altogether, I appreciate the ordinary privilege of being part of them.

Acceptance Isn’t Giving Up

I want to be careful about something. I’m not suggesting that people with chronic illnesses can simply decide to be happy and everything will be fine. I remember being so sick that I couldn’t shower without help, and no amount of positive thinking could have changed that.

I needed medical care, diagnoses, appropriate treatments, and people willing to advocate for me. Without those things, I might still be spending most of my life in bed.

I also know that many people are still fighting to get the kind of medical care I’ve finally received. Some are waiting for diagnoses, some can’t afford treatment, and others live with symptoms that haven’t responded to anything they’ve tried. I wouldn’t tell someone in that situation that they simply need to change their attitude.

But I do think it’s possible to become so focused on getting better that we begin treating our lives as something that will start later.

After the next appointment. After the next medication. After the next surgery or treatment. When the pain improves, when we can walk farther, or when we finally have more energy.

Sometimes those improvements come, and they’re worth pursuing. But sometimes the most effective treatment still leaves us disabled, exhausted, or living with symptoms that never completely disappear.

I’ve made peace with most of my limitations, but I haven’t stopped wishing certain things were different. I would love to move through a day without considering how much pain I’ll be in afterward. I’d love to make plans without keeping an escape route in mind in case my body gives out.

Sometimes being chronically ill still sucks.

Yet I can wish for those things and still enjoy the life I’m living. I can appreciate how much better I feel without pretending the remaining challenges are insignificant.

Being at peace with chronic illness doesn’t mean I’m happy about having it. It means I’ve stopped requiring my body to be different before allowing myself to enjoy my life.

The Life I Have Now

I sometimes think about that hospital window. My children standing outside, looking up.

At the time, I didn’t know whether I’d ever regain enough independence to do much beyond getting through each day.

Now I sit on my porch and watch those same children grow. I write, draw, teach, research, and make plans for things I haven’t done yet. I still have pain and limitations, but I have enough control over my days to make choices about how I want to spend them.

I’ll keep pursuing treatments that improve my quality of life. I’ll keep working with my doctors and adjusting when my body needs something different. There may be improvements ahead, and I’ll welcome them if they come.

But I no longer think of this life as something temporary, something to get through until a healthier version of me can finally begin enjoying it.

For years, I thought I needed to get healthy enough to start living.

Now I understand that living was never something I had to earn by becoming healthy.