Tag: Multiple System Atrophy

suffering

Still Here, Already Erased

Hannah

There’s a particular kind of loneliness that comes when you realize people are already grieving you—even though you’re still here.

You can feel it in the way conversations change.

In the pauses that linger a little too long.

In the careful tones, the lowered expectations, the way plans quietly stop including you.

It’s as if, in their minds, you’ve already crossed a threshold that your body hasn’t yet stepped over.

People don’t always do this out of cruelty. Often it’s fear. Sometimes it’s love mixed with helplessness. Sometimes it’s their own attempt at self-protection—beginning the goodbye early so it won’t hurt as much later. But no matter the reason, the result can feel the same: you’re treated like a memory while you’re still breathing.

And that hurts in a way that’s hard to explain.

Because you are still here.

You still think, feel, hope, laugh, get irritated, change your mind.

You still want to be seen as a whole person—not a fragile symbol of loss.

When people grieve you too soon, it can feel like being erased in real time. Like parts of you are being gently set aside, boxed up, and labeled past tense. You notice fewer questions about your opinions. Fewer arguments. Fewer expectations. A subtle withdrawal, masked as kindness.

A dimming of the flames that used to be the most meaningful light to you.

There’s a quiet injustice in that.

Because anticipatory grief may prepare them, but it isolates you.

It can make you feel like you’re standing at your own funeral, listening from the back of the room, wondering when someone will turn around and realize you’re still part of the conversation.

What many people don’t understand is that being alive—even with a terminal diagnosis, even with uncertainty—still means living. It means wanting connection, normalcy, meaning, humor, and sometimes distraction. It means wanting to be included without an asterisk.

Not as “the brave one.”

Not as “the one we might lose.”

Just as you.

There is a deep ache in watching people move on emotionally while you are still doing the hard work of staying present. Of waking up each day and choosing to engage with the world, even as the world quietly practices letting go.

And yet—there’s also clarity that comes from this place.

You learn who can sit with you without rehearsing the ending.

Who can love you in the present tense.

Who understands that honoring your life doesn’t require stepping away from it early.

Multiple System Atrophy

The Sound of Survival

Hannah

As my muscles weaken and I spend more time on my ventilator, my voice is fading as well. After much frustration trying to gather enough breath to make myself heard, especially from another room, we came up with a new solution.

I was delighted that with my new amplifier I can easily be heard, even in my softest voice. It saves me a lot of breath, and makes it easier for the people around to understand me.

However, this didn’t necessarily go over well with everyone. When my young son saw the demonstration of my new device his eyes widened. “Please do not EVER use that in front of any of my friends.” Ahh, I’ve seen this hard embarrassment before. It happened when I initially needed a machine to support my breathing, and it happened when I first started using a wheelchair. Whenever we were headed somewhere, he would ask, “are you bringing your vent? Are you bringing your chair?” Earlier on I was able to provide some balance- leaving these behind to make it through short events with him so that he had one less thing to worry over. As my condition has progressed however, these helps are a more constant companion. But here we are with a new player on the scene, and my heart breaks for my boy who just longs for some normalcy.

And so I find myself holding two truths at once. I am deeply grateful for tools that allow me to remain present, to speak, to be heard, to stay connected to the people I love. And I am also grieving alongside my son, who did not ask for a mother whose body requires so much explaining.

His embarrassment is not cruelty. It is not rejection. It is the ache of a child who wants to blend in, who wants his world to look like everyone else’s, who is already carrying more than his fair share of difference. I recognize that look in his eyes—the same one I’ve seen when strangers stare too long, when friends ask questions he doesn’t know how to answer, when he realizes yet again that our family does not move through the world unnoticed.

So I try to meet him with gentleness. I remind him that it’s okay to feel this way. That loving me doesn’t mean loving every machine that keeps me going. That embarrassment and compassion can exist in the same heart. I tell him that these devices are not symbols of failure, but of persistence—that they are the reason I can cheer for him, listen to his stories, and whisper “I love you” at the end of the day.

And I also do the harder work of letting go of the bargain I once tried to make—of believing I could soften this for him by minimizing myself. I am learning that my job is not to disappear to make life easier for those I love, but to model what it looks like to live honestly within limitation, without shame.

One day, I hope he will remember not the sound of the amplifier or the sight of the tubes, but the way we kept showing up for each other anyway. I hope he will know that his mother did not give up her voice—even when it came out differently than before.

Christmas, Uncategorized

Holy Ground at Bedtime

Hannah

Last night my son and I laid near the soft glow of the Christmas tree, and talked as we have many nights at bedtime. We talked about all the typical things; what the bullies said to him at school today, why of all the people in the world did God allow me to be sick, and will the doctors tell us ahead of time when I am about to lose my voice, or will it just disappear without warning. I walked him through the emotions he feels about each of these things, and then we moved on through our bedtime routines.

It was after he was quiet for the night that it hit me how abnormal our normal is. I thought about my friends around town also tucking their littles in for the night, but their bedside conversations being about things like vacation plans, what they want in their lunch tomorrow, or what park or fun store they should visit after school the next day.

The unfairness rose quickly—that our conversations are rarely frivolous, that heaviness so often sits between our words. But as I lingered in the comparison, gratitude surprised me. I am not who I once was, and I’m thankful for that. This life has trained my eyes to notice what is delicate and fleeting, like the fine frost etched along the glass. The former version of me, busy and strong, would have overlooked it all.

I lingered by the lights that night before bed. Soaking in their soft, twinkly glow. Inhaling the last whiffs of an evergreen candle burned earlier in the evening. And in that quiet, I realized that this is how God has been teaching me to live now—slowly, attentively, reverently. My life has been narrowed in many ways, but it has also been clarified. When your world gets smaller, the meaningful things grow louder. The sacred becomes harder to ignore.

I don’t wish this road on anyone, least of all my child. I would give anything to lighten what he has to carry, to let him worry about ball court drama instead of disease progression. And yet, I can see how tender his heart has become. How perceptive. How brave. He asks questions some adults avoid for decades. He feels deeply, and he is learning that feelings— even the heavy ones— are survivable when they are shared.

Our conversations may not be light, but they are honest. They are full of connection. They are full of presence. There is a strange gift in knowing that tonight matters. That this voice, this body, this moment is not guaranteed tomorrow. It presses love into sharper focus.

As I finally turned off the tree and made my way to bed, I carried both grief and gratitude with me. Grief for the ease we’ve lost. Gratitude for the depth we’ve gained. I don’t think one cancels out the other. I think they coexist, braided together, teaching me how to hold joy without naivety and sorrow without despair.

This is not the life I would have chosen. But it is the life I’ve been given. And within it—between bedtime prayers and flickering lights, between hard questions and small mercies—there is still so much beauty to behold.

faith

Between Fear & Forever: A Mother’s Honest Wrestling

Hannah

This week I listened quietly as my youngest talked about how differently his life is going to look in the coming months as our family is growing and changing, and one of the things he included was the absence of me in his life. He quickly realized what he had just said to me and began backpedaling, trying to assure me that’s not what he meant, and that I was still included in his equation of the days in front of him. It was too late though; like toothpaste squeezed from the tube, the words couldn’t be stuffed back from existence.

My thoughts began racing. Fight or flight kicked in, and I definitely chose fight. Fight for more days, more time. Fight for presence at all the important life events he’s going to want me at. Fight to be here so he doesn’t have to imagine a life without me. And then… like a rush of calm water, a peace came over me and I heard, “this place is not your home. All of these things, these moments, are temporary at best.”

Heaven is my true home.

Then just as fast as the peace washed over me, a wave of fear knocked me from my feet. What if Heaven isn’t really real? What if we’ve made it all up to comfort ourselves, but this is all there is? Panic ensued again, but this time as I shared my thoughts with a trusted friend she spoke the truth to me so lovingly: “Don’t you listen to that. Those are lies from the devil himself.”

Her words settled over me like a warm blanket pulled up to my chin in the dark — not removing the night, but reminding me I am not alone in it. And slowly, breath by breath, the panic loosened its grip. Because fear may shout, but truth always speaks in a steadier voice.

I thought again of my son, of his unfiltered honesty, of the way children sometimes say the quiet parts out loud. And I realized it wasn’t cruelty — it was simply the collision of innocence and reality. He is trying to imagine a future that feels unimaginable. So am I.

But maybe this is where faith becomes more than a word we say in church or a verse embroidered on a pillow. Maybe faith is choosing, in the trembling middle of unanswered questions, to set my weight on the promises of God — not because I feel brave, but because He is faithful.

Heaven is real, not because I can prove it, but because the God who has carried me this far has never once let His character contradict His compassion. I see hints of forever in the kindness of friends, in the way grief and hope can coexist in the same breath, in the way my child still reaches for me even as he learns to release me.

I don’t know how many more ordinary mornings I’ll get to witness or how many milestones I’ll still be present for. But I do know this: love leaves a imprint that death cannot erase, and mercy writes a story that continues long after my final chapter on this side of eternity.

So I will keep fighting for the days I’m given, but I will also practice loosening my grip — trusting that the God who holds my future also holds my family, with a tenderness that outlasts time itself.

And when fear rises like a tide, I will remember:

this world is not my home,

but neither am I abandoned in it.

There is a Savior who meets me in the trembling,

steadies my steps,

and whispers the truer story —

one where love has the final word,

and where every goodbye is only temporary.

Uncategorized, Friendship

Curiosity & Caring

Hannah

There’s a sacredness to suffering that not everyone understands.

When someone is walking through the deep waters—when every breath feels borrowed and every day is held together by grace—questions can become sharp without ever meaning to be. Have they given you a timeline? What treatments are they trying next? How bad has it gotten? Have they told you when they expect you to die?

Some of those seem atrocious, but they are questions we have actually answered had to field at one time or another. Sometimes these questions slip out clothed as concern, but they land like cold hands on tender skin.

Curiosity is not the same as caring. Curiosity wants information. Caring wants presence. Curiosity circles around pain to peer inside. Caring steps into the shadows and sits down beside you. Curiosity tries to relieve its own unease. Caring is willing to feel uncomfortable just so you don’t feel alone.

I’ve learned there is a holy difference.

I don’t mind sharing pieces of my journey—there is beauty, even here, and God’s fingerprints are everywhere. But when the conversation turns to timelines for my dying or details of treatments that stretch my limits just to endure… that crosses into a territory my soul guards carefully. It’s not because I’m ashamed or afraid. It’s because this is holy ground for me and my family. We are living it, breathing it, praying through it. I am learning to trust God in the dark, and trust is fragile when handled carelessly.

What I welcome—what I desperately treasure—are those who choose presence over answers.

The ones who say, “I’m here.”

The ones who quietly hold space when the tears come.

The ones who don’t need to know the forecast of my future to love me faithfully in my present. The ones who walk with us without needing to understand every detail of the valley. This is the love that looks like Christ.

He never demanded explanations from the suffering. He didn’t ask the bleeding woman for her medical history or the blind man for an exact timeline of his decline. He simply came close. He touched. He healed. He stayed.

He showed us that compassion doesn’t interrogate—it accompanies.

And so we lean into the nearness of God and into the arms of those who reflect Him, the ones who simply show up. The ones who see us instead of studying us. The ones who offer presence instead of probing questions.

If you want to walk beside me, you don’t need to understand every piece of what’s happening. You don’t need updates or timelines. You don’t need the painful details.

You just need a willing heart and a steady step.

Sit with me. Pray with me. Laugh with me. Hold hope with me when I’m tired. Remind me that God is still good, still here, still leading us home.

Curiosity might reach for facts, but caring reaches for hands.

And in this season, hands—and hearts—are what hold me up.

suffering

Standing, when everything shakes

Hannah

🎶 “Standing on the promises of Christ my King, through eternal ages let his praises ring; glory in the highest I will shout and sing, standing on the promises of God!”🎶

Affliction has a way of changing the way we sing. Once, I sang this hymn standing tall, lungs full, voice rising like a joyful Baptist at a Saturday night revival—sure, strong, unquestioning. Now, I sing it slower from the quiet of my hospital bed, tasting each word, weighing every promise against the heaviness pressing on my chest. The melody hasn’t changed, but I have.

18 days. Eighteen days of one hard thing after another maddeningly marching through the doors of my life—uninvited, unrelenting. Health unraveling into painful new territories, relationships trembling under pressure that threatens what once seemed unshakeable, the future scattering into pieces I can no longer hold together. It feels like too much.

In a weary whisper only God could hear, I said, You are asking too much of me. This feels impossible. I don’t think I can do this. And yet—You must think I can.

So where, Lord, is the help You promised?

Promise. That word flickered through my tired mind and opened a remembered door: “This is my comfort in my affliction, that Your promise gives me life” (Psalm 119:50). There it was—quiet as a breath, clear as a bell: Hannah, this is your help. My promises. Stand on them.

So the words came tumbling—like a river breaking through a dam—every scripture, every promise I could catch hold of, spoken aloud over the noise of despair crowding my soul:

If I stand firm to the end, You will save me. You give strength to the weary. I will see the goodness of the Lord in the land of the living. Your name is a strong tower—I run to You. With Your grace, all things are possible. So help me do what feels impossible. Help me make it through this.

And this morning, something was different. The circumstances hadn’t shifted—the questions still hovered—but my heart? It stood. Courage where fear had sat. Steadiness where trembling had lived. God had kept His word. He renewed me. He breathed life where hope was thinning. His promises held me upright, where I thought I would fall.

My family woke to the sound of me—quiet, raspy voice —singing again like that happy Baptist at a Saturday night revival: Standing on the promises of God.

And this time, I am not just singing it. I am living it.

Uncategorized

The Dusty Stethescope

Hannah

Sleep evaded me again last night.

I reached for distraction—scrolling through ideas for Christmas gifts for my people. When I searched for something for my young STNA/up-and-coming physician, I stumbled upon a site selling the most beautiful stethoscopes I’d ever seen.

Colors like jewels.

Patterns like joy.

One in particular caught my eye—a swirl of pink animal print and sharp, gleaming purple— shining with all things girlish and lovely. And for a brief flicker, right before unconscious thought becomes awareness, I mused, “this is the one I’ll ask for next time.”

But then—

my heart caught up to my body.

And I remembered where I was sitting: in my hospital bed at home, a ventilator mask pressed against my face, small plastic cups of pills lined neatly beside me, guarding against the next wave of breathless panic.

In the thick, holy silence of 2 a.m., I swear I heard the sound of my own heart dropping back into the deep, heavy truth of reality.

I will not be needing a new stethoscope.

Not now, not ever.

No more pressing the cool bell to a grandmother’s arm, listening for the soft rhythm of life beneath her paper-thin skin.

No more playing peekaboo with wide-eyed children, pretending it’s a game while I listen carefully to the music of their lungs.

Those days—those glory days—hang preserved behind glass, my green stethoscope draped like a memory across the frame. The strength that once carried me into the chaos of sirens and smoke has long since ebbed away, leaving behind a body most people only know in its fragility, not its former fire.

Suffering has a way of testing what our hearts truly believe.

It presses heat against the places where we’ve built our sense of strength.

And when suffering comes for the strong, it is often met with anger—

not at the pain itself, but at the theft of power.

On my hardest days, I don’t find myself begging for suffering to stop.

I find myself begging for strength to return.

That’s the honest prayer.

Not fewer storms—just stronger arms to stand in them.

And yet, even that desire reveals how frail my own strength really is.

Paul puts it even more vividly;

“We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.” (2 Corinthians 4:10)

We love strength.

We polish it, parade it, protect it.

And when it’s gone, we question the goodness of God.

But I am learning—slowly, painfully—that the taking of strength is grace.

Grace that empties my hands of what I thought I needed,

so that I might cling more tightly to Jesus.

Now, as I face this new season of weakness,

with tiny bursts of ability to go and do,

I ask myself: how will I use this small strength?

I’ve been praying—for hunger on my well days.

For Scripture to taste sweeter.

For my heart to grow restless for the things of God.

For apathy to break, for grace to deepen.

And when suffering returns—as it will—

may my heart be ready to receive it.

To whisper, thank you, Jesus, for entrusting me with this new hard.

Help me be faithful in it.

Help me reflect your goodness in the ache.

Let me be a mirror of grace—

a witness to the beauty that lives

in the losing of strength,

and the finding of You.

grief

Midnight Tears

Hannah

In the ink-black hush of night, I lie awake, my body heavy with fatigue and pain, my heart a storm of grief and longing. Tears fall in quiet rivers, tracing the contours of sorrow I cannot name. I weep for my husband, for the weight this life presses upon him. I weep for my adult children, for the precious hours I wish I could stretch into eternity, to know them more fully, love them more completely. And I weep for my twelve-year-old boy—for the tender, unspoken ache of a mother who knows she cannot protect him from everything, and who feels the relentless pull of her own mortality. There are no words to capture this deep, trembling sorrow.

Yet even in this darkness, there is something sacred. Pain and wonder sit side by side in the same trembling heart. In these midnight moments, when the world is hushed and the stars are silent witnesses, I feel the faint brush of God’s own breath upon me.

As the dark gives way to morning’s first light I walk with my boy through grief toward hope, whispering truths we both need to hear: that this life is but a blink, fleeting, whether our days end at thirty or a hundred and five. None of us are promised tomorrow. Today is the gift—and even suffering, piercing and raw, is not wasted. It is the means by which God presses treasure into our hearts, treasure that lasts beyond the fleeting pulse of this world.

So I hold my boy’s hand and I murmur lessons meant for both of us. That Jesus is enough. That our story does not end in a hospital room or a grave. That heaven is not an escape, but a home we were made for, and sorrow is merely the shadow that makes its light possible.