For every person living inside a body that is fighting against them – and for everyone who loves them.
The first time I heard about my stepmother Jean, she was helping my father hang sheetrock in his pole barn.
That was their date. Not dinner and a movie. Not a walk in the park. Sheetrock. A pole barn. Two people who had found each other later in life, sleeves rolled up, doing the work side by side – and from everything I have come to know about Jean, she would not have had it any other way.
She was a nurse for most of her adult life. She cared for her late husband through his illness until he passed. She cared for her mother-in-law until she passed. She has spent the better part of her life being the strong one – the capable one, the steady presence, the woman who shows up with her sleeves already rolled up and does not wait to be asked.
She has Parkinson’s Disease now.
And today I sat beside her in a speech therapy room while she did exercises to strengthen the muscles in her throat.
Not to sing. Not to speak more clearly, though that too.
To swallow.
To do the thing that every person reading this has done ten thousand times today without once thinking about it. The thing that happens automatically, invisibly, effortlessly – the thing that healthy bodies do without requiring practice or demanding courage.
She was practicing how to swallow food without choking.
And I burst into tears.
I did not plan to. I could not stop it. The therapist paused. Jean looked at me. And I sat there in that small room with the weight of what I was witnessing pressing down on my chest and trying to swallow the lump that formed in my throat – the weight of what this woman, who once hung sheetrock on a date and cared for everyone around her before she ever asked for anything herself, endures every single day just to do the things the rest of us take completely, thoughtlessly, shamefully for granted.
She is still fighting.
This piece is for her. And for every person like her – living inside a body that has become the hardest place to be, still getting up every morning, still showing up for the exercises and the appointments and the thousand small battles that nobody outside that room ever sees.
I see you.
I want you to know that.
The courage it takes to keep fighting a battle that most of the world cannot see – that is not small. That is one of the most extraordinary things a human being can do.
What Nobody Talks About
There is a particular kind of suffering that the world does not know how to talk about.
Not the acute kind – the crisis, the diagnosis, the dramatic moment that everyone rallies around. The world knows how to respond to that. Cards arrive. Casseroles appear. People show up.
The kind I mean is the chronic kind. The daily kind. The kind that does not have a beginning and a middle and an end – the kind that simply is, day after day, requiring more than most people will ever be asked to give just to get through the ordinary hours.
The kind where swallowing is an exercise.
Where projecting your voice takes effort it never used to take.
Where the body you have lived in your entire life – the one that carried you through decades of work and love and ordinary Tuesday mornings – has become a place that requires negotiation. That asks more of you than it gives back. That makes the simplest things the hardest things, quietly and relentlessly, while the world outside continues at its ordinary pace.
This is what chronic, debilitating illness looks like from the inside. Not the dramatic version. The daily version. The one that most people living with serious illness know intimately and that most people around them can only glimpse.
I got a glimpse today. And it broke something open in me.
The Things We Take for Granted
I want to name them. Because I think naming them is one of the most honest things I can do.
Swallowing. Breathing without effort. Walking into a room without calculating the distance or the terrain. Speaking loudly enough to be heard across a table. Picking up a glass. Buttoning a shirt. Writing your own name. Getting out of a chair without planning how you will do it.
These are not small things. We treat them as small because they cost us nothing – because they happen so automatically that we have forgotten they are happening at all. But they are not small. They are the infrastructure of a human life. They are the things that make independence possible, that make dignity possible, that make the ordinary rhythm of a day feel like your own.
When those things begin to require effort – real, deliberate, exhausting effort – something changes in a person’s relationship with the world. Not just physically. Psychologically. Emotionally. The grief of losing function is not only about what you can no longer do. It is about who you were when you could do it without thinking. It is about the version of yourself that existed before the body started asking so much.
That grief is real. It is legitimate. And it deserves to be named out loud by someone who is not afraid to sit with it.
We forget that the ordinary things are extraordinary – until we watch someone we love fight with everything they have just to do them.
What Fighting Actually Looks Like
We use the word fighting easily when we talk about illness. We say people are fighters. We put it on ribbons and fundraising posters and in the kinds of inspirational phrases that mean well and sometimes miss the point.
I want to tell you what fighting actually looks like. Because I watched it today in a small therapy room and it looked nothing like the poster version.
It looked like a woman doing throat exercises with quiet determination.
It looked like showing up to an appointment that will not cure anything – that will only, hopefully, slow the losing – and doing the work anyway. Doing the repetitions. Following the instructions. Trying again when it doesn’t work the first time. Trying again when it doesn’t work the second time.
It looked like enduring the presence of someone who loves you bursting into tears in the corner of the room – and having the grace to pause and look at them with something that was not irritation but something closer to recognition. I know. I know it is hard to watch. Imagine living it.
Fighting, for people with chronic and debilitating illness, is not dramatic. It is not triumphant in the way movies depict triumph. It is quiet and repetitive and costly and it happens in small rooms with fluorescent lighting and it does not always feel like winning because often it is simply the refusal to stop.
That refusal is one of the most courageous things I have ever witnessed.
What the People Who Love You Want to Say
If you are living with Parkinson’s, or MS, or ALS, or cancer, or lupus, or any of the hundred conditions that make the body a daily negotiation – there are things the people who love you want to say and do not always know how.
They want to say: I see you. Not the illness. Not the symptoms. Not the version of you that needs help with things you used to do alone. You. The person who has always been there, who is still there, who is more present in many ways than people whose bodies make no demands at all.
They want to say: I am in awe of you. Because watching someone continue to show up – for the appointments, for the exercises, for the ordinary mornings that cost them so much more than they cost everyone else – is genuinely humbling. It recalibrates everything. It makes the things we complain about feel very small and the things we take for granted feel very precious.
They want to say: your suffering is not invisible to me, even when it is invisible to the world. The chronic nature of serious illness means that after a while, the people around you go back to their ordinary lives. The casseroles stop coming. The check-in calls become less frequent. Not because they don’t care – but because life continues and the crisis has become the baseline and it is easy, from the outside, to forget that the baseline is not easy at all.
It is not easy. We know that. We just don’t always say it.
Consider it said.
Your suffering is not invisible – even when the world has gone quiet around it. You are seen. You are not alone in this. And what you carry every single day is not small.
What the Tears in That Room Were For
I have been a clinical social worker for thirty years. I have sat with people in profound pain. I have learned, professionally and imperfectly, to hold my own responses steady in the presence of someone else’s suffering.
Today I could not.
And I have been thinking about why. About what it was, specifically, in that small room with the fluorescent lights and the throat exercises, that broke through everything I know about composure and professionalism and being the steady presence in the room.
I think it was the ordinariness of it.
Not a crisis moment. Not a dramatic turn. Just a Tuesday afternoon appointment in a world where this is simply what Tuesdays look like now. A strong woman doing exercises to swallow. A therapist guiding her patiently through repetitions. The quiet, unglamorous, relentless work of fighting a disease that does not fight dramatically – that simply takes, a little at a time, the things that used to be free.
The tears were for all of it. For her specifically and for everyone like her. For the woman who hung sheetrock on a first date and spent her career caring for others and never once asked the world to slow down for her – and who now sits in a small room practicing the things the world used to do for free. For my father, who watches the person he loves navigate a body that is changing in ways neither of them chose. For every caregiver sitting in a room like that one, feeling the weight of love and helplessness arriving at the same time with no clean way to hold both.
The tears were, I think, the most honest thing I had to offer in that moment.
And she received them with grace. Because that is who she is.
This Is for You
If you are reading this from inside a body that asks too much of you –
If you have spent today doing something that the person next to you did without thinking –
If you have sat in a small room with fluorescent lights and done the repetitions and shown up for the appointment and kept going on a day when stopping would have been completely understandable –
I want you to know that your fight is witnessed.
Not just by the people in the room with you. By everyone who has ever loved someone fighting the same battle. By everyone who has ever sat in the corner of a therapy room and wept because the courage in front of them was too large to hold quietly.
You are not invisible. Your suffering is not ordinary, even when it has become your ordinary. The things you do every day to stay in your life – to remain present, to keep your voice in the world, to swallow your food and walk your steps and button your pants – those things matter. You matter.
And you are so much more than what this disease has taken.
You are the person who is still here.
Still fighting.
Still showing up.
That is not nothing.
That is everything.
To Jean – and to everyone like her.
Thank you for showing me what courage actually looks like.