Diagnosis

on news I didn't want, holding space for being fully human, and what strong really looks like.

I had no idea I had taken the entire month of September to write this letter to you. You know those seasons where time stands still and passes in a breath, all at once? Yes, well, about that.

Most times when I sit down to write, something is stirring within my heart or has been on my mind, and I begin there. Today, sitting in the dappled light atop my couch, “resting’ because I am supposed to, I come to my keys, having no idea what I have to say.

I suppose I have written long enough to trust what comes out of my hands, and so we will do that today…and it will be enough.

There’s no easy way to type such things, other than to simply spell them out. I have not been well for a few months. I felt fine, great, actually, but when I finally made my way at the end of May to the doctor for the UTI from hell, and scans were ordered before our New York trip, we got some odd news. My spleen was enlarged. Like, really enlarged. I could go on about the four doctors I saw for the next four months, trying to solve what was causing this, a very low platelet count, and some liver abnormalities. I could share each tiny step of all the tests with you, but the long and short of it is this:

I finally made my way to UAB (a research hospital in Alabama, and a great one at that) a couple of weeks ago, and they told me one of the things I had been hoping not to hear during this whole business…they think I have cirrhosis. I am forty two years old and I may have cirrhosis.

I’m pausing to let typing that sink in for myself, and feel free to take a pause if you’re as confused as we have been the last few weeks.

Some of you know I was diagnosed with PTSD in 2021, and I began taking medication for panic attacks. It was absolutely the right the only thing to do in that moment for me, for my family, and for my brain to reset. I took it for two years, and also kept going to therapy. During that time, I rapidly gained weight despite having changed my diet or intake zero, and apparently, due to some genetic predispositions, my liver just flat out didn’t like it. It got pissed off, to use multiple doctors’ words. The truth is this: you can get cirrhosis (or other liver diseases) just as easily from fat finding its way to your liver combined with other factors: weight gain, genetics, moderate alcohol use, etc. You can watch other people around you consume loads more alcohol, or gain more weight, or, or, or…but it can still just happen, like many other illnesses or diseases.

And so it may have. Tomorrow morning, I go in for a liver biopsy (I know they do these everyday, but poking around in the jugular vein does not sound super exciting to me). We have told the kids, and they were beautiful. Scared, but hopeful. There for me. We gave them time to ask questions, showed them scans and pictures, and then asked them how they felt about it. We were making jokes by the end, because that is who we are.

a silly pic I snapped for the older kids in my hotel near UAB…I got no response for my effort. teenagers.

They are each facing so much on their own, with us beside them. They face their own diagnoses, and I have to say, our world has been filled with one trauma after another for the last 12 + years. We have gone from divorce to a tumor to court to emotional trauma to PTSD to court again to the kids’ diagnoses to living in recovery to a new health scare. And those are just the big bullet points. (This would be a whole separate story as we none have the emotional bandwidth to unpack this, too.)

Writing about these traumas in our life is not simple for me. One, many of the details are a part of a story that is not mine to share. Two, I have to prioritize which pieces are a gift to myself and even one other person if I share them with the internet, and which pieces are for us, and us alone, to walk through and live our fullest, most beauty-filled lives. Our lives have been full of so many of back to back major life “hard,” writing personally about a lot of our lives is simply off the table.

But this one? This last little cherry on top (chuckling as I type) is mine to share or not, and it occurs to me how deeply I miss writing when I have to step away from harder truths of the seasons we are in. It also strikes me (as it always does) someone out there is likely walking through a very similar life to my own, and maybe sometimes, all we need is the reminder that we are not alone. Our pain is unique to us, but our struggles and traumas are very universal so much of the time. We are not the only family sharing a world of grief and seeking to cultivate a world of beauty at once.

The evolved part of me knows the things. I know I will face the extent of this the same way I face everything. I will put my head down, do all the things I am supposed to do to help take care of myself. I had already lost most of the weight gained, and I cut alcohol months ago, just for general health reasons. Outside of that, I will listen to my doctors, I will go to my appointments, I will do the surgeries or tests, and gratefulness and beauty will find me the way they always do in moments of pain.

But, I guess for the sake of being truly human, I would be a liar if I told you I’m not angry. I would be lying to say right now I feel thankful. I am not simply “happy” it’s not this or that or another. Yes, I am grateful my leukemia tests came back negative. I am grateful all the other big scary tests came back negative. But this one didn’t. And it just sucks.

It is slightly possible I do have some mild scarring instead of full blown cirrhosis, and we are hopeful for that. Maybe my liver only got a tiny bit pissed and skipped over pure rage. If it is the big bad, sure, I am afraid of the specifics…how bad is it? How much of my liver is actually working? Will I have to get on a transplant list, now or later? Mostly, though, I am afraid of what this may mean for my children. What would happen in their lives if something happened to me? We all worry about this, I know. For me, as many of you, it means uncertainty around how they would navigate a life where they do not live in our care and custody. It is terrifying.

And yet, I will turn towards this the only way I know how. One moment, one breath, one day at a time. I’ll trust what has been laid out before me, and when I cannot feel it, I will trust the deep truths of this universe. I’ll fall apart and let love pull me back together over and over. This is how we embrace the diagnosis of being human.

this is one way I know I am alive…I snap a photo of a gorgeous building after hearing tough news because I just cannot help myself.

I suppose I say this out loud, in this sacred space of community I call part of my home to say this to you: If you are facing a big diagnosis, or a mountain of “small” problems, or about five really large ones…you get to say it’s hard. You get to feel scared, brave, grief-stricken, hopeful, terrified, moxie, exhausted, enraged and at peace. You get to hold space for all of that. The truth is our bodies are feeling it, carrying it all, even when our coping brains tell us otherwise. Might as well say it out loud. We don’t get points for pretending these seasons are not devastating. We are not only strong when positive words come out of our mouths. We are strong when we are living fully present in our bodies, in the darkest and brightest specks of our souls.

had Andrew chuckling at me the morning of my biopsy…I asked for a quick photo because “the lighting was good and we were alone for once.” The biopsy was not fun, but it is done and I am happily at home now.

When you have wiped up the last dish of the day, after facing a treatment on your body, trying to care for your family, get all the people from here to there, all the while working out the logistics of your next appointment (or theirs), and a tear falls down your face and there are no greeting card words left, you are strong. You are in it. You are in the arena. You are in your own body. You are not just plowing ahead, blinders on. You are facing inward, facing yourself and your fears and your anger, your pain…and you are washing the dishes anyway. You are moving forward anyway.

I don’t know about you, but that kind of strong, the human kind…that is where I want to find myself. Any one of us can fluff ourselves up by talking the talk, avoiding pain in the moment and subjecting ourselves to quiet suffering, but good Lord, can we give ourselves a break and just say it sucks? Life gets to be hard, impossible sometimes, and we can still be grateful for the big picture.

You can find yourself collapsed in a heap in your kitchen floor and be the strongest you ever were.

You are built for this. God made you for this. You are infinite. We all are.

Love to you,

S

*I will share updates along, I’m sure, but for now, please know my only hope in sharing this possible diagnosis with you, is to share what is happening inside me with you. I suspect something magical will come from allll of this that has lasted so long for us. I want to call it what it is: painful, and I want to know people who will do the same. I gave up looking the part a long time ago, and became more interested in the deep work of being fully human, and fully divine at once. I guess you could say writing this is one way I am looking for other souls to connect with who are doing the same. Enough for now. 😉