Tag: Multiple System Atrophy

Multiple System Atrophy

Dog Years & Borrowed Time

Hannah

I never say it without a smile, “I’m living in dog years,” and I’m the first to say it’s not lost on me that I’m living on borrowed time. The diagnosis spoken over me came also with a projected expiration date, but what those doctors may not have known is that my life belongs to God, and he will have me here for the perfect amount of days, regardless of any curse spoken over my life.

Some days a long goodbye comes with torment; an aching to be done with all the hard parts, a desperation for deep and restorative rest. Most days though, I stick to my belief that a prolonged goodbye is a gift entrusted to me by God—a sacred window of time to point a captive audience toward His goodness, faithfulness, and grace.

Over the years, I’ve learned that living in this tension—between the exhaustion of the body and the eagerness of the spirit—is where the real ministry happens. It strips away the frivolous noise of the world and leaves behind a sharp, beautiful clarity: every breath is an intentional choice, every morning a deliberate mercy, and every conversation an opportunity to leave behind an echo of eternity.

A sudden departure leaves little time for final words, but a slow walk home gives you the space to write love letters with your life. It allows you to wrap your arms tighter around those you love, to forgive faster, to laugh freer, and to speak the name of Jesus with an urgency that only a ticking clock can forge. It lets you demonstrate that peace isn’t the absence of pain or the presence of a clean bill of health; it is the unwavering presence of God in the middle of the storm.

I don’t know how many pages are left in my story, and truth be told, I don’t need to. The Author of life has never miscalculated a single chapter. So on the hard days, I will lean heavily on His strength to carry me through the pain. And on the good days, I will use whatever breath I have left to remind anyone listening that death has lost its sting, grace is entirely sufficient, and the God who holds my tomorrows is worthy of every single praise I have left to give.

daily graces

Holding Both

Hannah

My dresser drawers are an awkward level of stuffed right now. You see, the calendar says we are between Spring and Summer— the time of year when the temps warm up to a delightful cozy warm, but still cool enough to enjoy being outside without your face melting. This year however, we seem locked into some eternal cold front of a winter that is reluctant to release its grip. So I have all my cozy cool weather clothes, but there have also been handfuls of days warm enough to unpack some short sleeves and other summer clothes, so slowly my dresser has become a mish mash of three different seasons. My shoe basket is piled high with a mashup of boots, flip flops, baseball caps, and beanies, lending no real clarity to which season we are actually in.

And honestly, I think my heart has looked a lot like my dresser lately—a strange mixture of seasons all occupying the same space at the same time.

There are things in my life right now that feel deeply good. Prayers being answered. Unexpected joy. Moments that make me laugh so hard I forget, for a second, how heavy life can be. There are relationships growing, little victories worth celebrating, reminders of God’s kindness showing up in ordinary places.

And yet, folded right beside those things are grief, uncertainty, exhaustion, disappointment, and questions I still don’t have answers to.

I keep wanting to organize it all neatly. To separate the winter from the summer. To decide whether this season is hard or beautiful. Joyful or painful. Hopeful or heartbreaking. But life rarely fits into tidy drawers.

Scripture is full of people holding both. The Israelites carried promised land hope while still wandering in wilderness dust. David wrote songs of praise with tears still wet on his face. Martha confessed deep belief in Jesus while standing beside her brother’s grave. Even Jesus, on the night before the cross, broke bread with His friends while fully aware of the suffering ahead.

Faith was never pretending one season didn’t exist. Faith is trusting God enough to hold all of it honestly.

Maybe maturity in Christ looks less like “finally getting to the good part” and more like learning that God is present in every part. In the celebrations and the sorrow. In the healing and the waiting. In the warmth of summer days and the lingering chill that refuses to leave.

Maybe the goal is not to force our lives into one season at a time, but to recognize that sometimes God grows things in the tension of both.

So for now, my drawers remain overstuffed and confused. My shoe basket still looks ridiculous. And my heart still carries both gratitude and grief at the exact same time.But I’m learning this; the coexistence of joy and pain does not mean God is absent. Sometimes it is the clearest evidence that He is gently teaching us how to become people who can hold both hope and heartbreak without letting either one define us completely.

And maybe that messy middle place — where winter and summer overlap — is holy ground after all.

Uncategorized

Who Remains

Hannah

As my illness has not so quietly crept into new areas, the clear, trustworthiness of my world that was semi-predictable has faded as well. Despite what my energetic heart and mind have had planned, my body is simply not getting the message, often doing the opposite of what I’m asking it to. This was especially evident this past week.

Sunday I slept through most of the sermon and parts of worship. Again. It had been a tiring week—being in the middle of a 2 week stretch where my husband was traveling, but I honestly felt like I got a decent night’s sleep on Saturday. My fatigue continued though, and I found myself either missing things, or having to cancel plans because my body was determined to sleep more whether or not I was at an event or behind the wheel.

Tuesday a dear friend came over to visit. After just a few minutes chatting I dozed right off mid conversation . I jostled awake shortly, and profusely apologized for my rudeness. My friend was as gracious as could be. The next thing I knew I awoke a significant time later to my friend still sitting at my bedside. She had brought her Bible, and as she read she took notes that she compiled into a beautiful and encouraging 3 page letter that she gifted to me on her way out. I was sad and upset that I had missed out on visiting with her, but her words were a gift to my heart.

“Please don’t be embarrassed. It was an honor you let me in today and I enjoyed the time by your side even if it was a quieter visit. Love you!”

I had another friend visit recently with her kids in tow. The littles sat at the dining table and kept busy while their mama and I visited. I didn’t even realize I was sleepy until I startled awake to see her hustling her littles quietly out the front door.

That moment sat heavy with me long after the door shut. Not because she was unkind—she wasn’t. She was trying to be considerate. Trying not to embarrass me. Trying not to wake me. But what I woke with was the reality of it all. The quietness of it. The careful escape. The unspoken understanding that the visit had suddenly become awkward and there was no graceful way to recover it.

Illness has a way of turning normal interactions into strange little social negotiations nobody knows how to navigate. That may be one of the loneliest parts of this illness for me lately—not just the symptoms themselves, but the way they alter the atmosphere in a room. The way people start adjusting around me. Whispering around me. Watching me carefully. Exiting cautiously.

I know the people who love me are doing their best. I know they aren’t judging me cruelly. But it is still difficult to repeatedly become the unexpected thing everyone has to accommodate. I miss being easy to be around.

My friend who stayed while I slept gave me a gift I didn’t even know I needed; the gift of presence.

Not fixing.
Not rescuing.
Not trying to force the moment to be less uncomfortable than it was. Just staying.

There is something profoundly Christlike about that kind of love. The kind that does not flee weakness or rush past suffering, but settles beside it without demanding it hurry up and become easier.

I think so often I have imagined God’s love primarily through the lens of intervention—that if He loved me, surely He would fix this. Relieve this. Wake me up from this exhausting fog my body keeps pulling me into. But lately I am beginning to wonder if sometimes His love looks less like removal and more like companionship. A God who remains.

A God who is not embarrassed by my limitations. Not irritated by my weakness.
Not awkwardly slipping out the front door because He doesn’t know what to do with me.A God who stays at the bedside.

Maybe that is why the presence of faithful friends has ministered to me so deeply in this season. Because every quiet act of patience, every unhurried moment, every person willing to sit in the strangeness of this illness without recoiling from it—they are reflecting Him back to me in ways I desperately need.

Not every act of love looks dramatic.
Sometimes holiness looks like simply staying when it would be easier to leave.

Terminal

Drifting

Hannah

There was a time when they were the new couple. The friendly girl, not afraid to take on a bleak prognosis, and her wingman, always at her side helping her along.

Then things started to change. The wingman was often tied up elsewhere, and eventually wasn’t available to pursue the same life she did, so she continued showing up on her own, often with a kid or two in tow. And then that dwindled too, the kids stopped wanting to get up on Sunday mornings, pushing back against beliefs they once embraced.

The girl continued to push herself to be there, sometimes through difficult obstacles. A wheelchair ramp that often did not work. A car door that jammed half the time. But instead of resolution, she had to soldier on in the best way she could, piecing things together to work so she could still show up.

Being in that place made her come alive, surrounded by likeminded friends journeying together. Eventually though, even that got too hard in a body that was fighting against her in every way.

When she tried to use her gifts in the ways she still could, she was nothing more than an inconvenience. Where her phone used to light up if she left a vacancy in the front row, it now sat gray and silent, as if the empty space had simply backfilled in her absence.

She hoped that the community she worked hard to build around her would continue to surround her in this new season and new capacity, but things grew quiet.

The walls of her room that used to echo with presence and laughter now felt more like walls of a prison, as visits became fewer and further between. Still she clung to the hope that her heart and her home would be full as she journeyed toward Home. Then came the realization that this road was going to end just as lonely as it had begun.

But that wasn’t the whole truth—just the part she could see.

Because somewhere along the way, she had quietly started measuring love by footsteps and phone calls… by who showed up and who didn’t. And while those absences were real and painful, they were never the full accounting of her life.

What she couldn’t always feel—but had not lost—was presence.

Not the loud, bustling kind that fills a room on a Sunday morning. Not the kind that depends on functioning ramps or willing friends. But the steady, unrelenting presence of a God who does not require her to “get there” in order to be near.

In the stillness of that room, where the walls sometimes felt too close and the silence too loud, there was Another who had never once failed to enter in.

The One who saw every effort it took just to show up.The One who noticed when no one else did. The One who did not measure her faith by attendance, but by endurance.

And maybe—though it took time to admit—her life was not a story of abandonment, but of being held in ways she didn’t expect.

Because the truth is, community can falter. People can disappoint. Even the most well-meaning hearts can drift when life gets busy or uncomfortable or unfamiliar.

But God does not drift.

He sits beside hospital beds and wheelchairs.
He remains when invitations stop coming.
He speaks in quiet when the noise of life fades.

And He does not wait at the finish line—He walks every inch of the road. So while it may have looked like her story was ending the way it began, heaven would tell it differently. It would say she was never unseen.
Never unsupported. Never alone.

It would say that every hard step she took toward Him that felt unseen mattered more than a hundred easy ones taken in comfort.

And it would remind her—gently, faithfully—that “home” was never something she had to gather people to reach. It was always where He was. And He had been there all along.

Uncategorized

Leading my Limits

Hannah

When I opened my arms wide to welcome in a community that would keep us afloat on the days we need it, and hold us up on the days we are too frail, I also opened my arms to a whole range of perspectives, experiences, and opinions. It stands to reason that with so many different brush strokes making up my tribe, there will sometimes be tension when considering my situation.

I am a terminally ill young(ish) mom, wife, medical professional, friend, and relative with an awful lot of people who care deeply about me and want the best for me. And each of those “best wishes” is shaped by that person’s own knowledge, fears, and life experiences. I’m genuinely grateful for that—it means no stone is left unturned, no possibility ignored, no concern left unspoken. That kind of care is a gift.

But if I’m honest, it can also be a lot to carry.

I have been offered the full spectrum of doctors’ names and specialties, an impressive number of healing stories shared from personal experience, and a wide array of remedies that are “sure to help”—from expensive teas and elaborate oils to unconventional rituals and everything in between. Each suggestion is given with love. I know that. I feel that.

And still… it can be overwhelming.

Because underneath all of it is an unspoken assumption: that I might not be doing enough, considering enough, or protecting myself well enough.

The truth is, I am living inside this body every single day. I am the one weighing the risks, measuring the energy costs, and deciding what is worth it and what is not. I am constantly calculating—what will give me more life, and what will simply take more from me.

I need the space to do that.

I need the freedom to say, “Thank you, but no,” without feeling like I am letting someone down or missing something critical. I need permission—not from others, but from myself—to trust my own judgment.

Because I am not passive in this. I am not unaware. I am not neglecting my care.

I am choosing, very intentionally, how I spend what I have.

Sometimes that will look like pursuing treatment. Sometimes it will look like resting. Sometimes it will look like saying yes to something that feels worth the risk, and other times it will look like protecting my peace at all costs.

All of those choices are valid.

So if you are someone who loves me—and I know you are—please hear this gently: your care means everything to me. Your suggestions come from a place of compassion, and I don’t take that lightly.

But the most supportive thing you can offer me is trust.

Trust that I am listening.

Trust that I am thinking.

Trust that I am choosing with both wisdom and intention.

And trust that I know, better than anyone else, what my body and my life require in this season.

Walk with me. Sit with me. Pray for me. Laugh with me.

But please, let me lead when it comes to my own limits.

suffering

Life in the Margins

Hannah

Someone recently asked me what my favorite tangible thing is. It gave me pause, because I don’t think I’ve stopped to wonder over that question, but the answer was clear. My pink journaling Bible.

It’s hard to explain, but my pink art journaling Bible isn’t just a book to me—it’s the place where my life with God has actually taken shape in a visible, tangible way.

Every page holds more than printed words. It holds prayers I’ve prayed when I didn’t have the strength to say them out loud. It holds questions I’ve wrestled through, verses that steadied me, and moments where something finally “clicked” and I knew God was speaking to me personally. The notes, the colors, the artwork—they’re not decoration. They’re a record of relationship.

Over time, it’s become a kind of memorial. I can flip back and see where I was struggling, where I was growing, and how God met me in those exact places. It reminds me that He’s been faithful, not just in general, but to me—specifically, consistently, and patiently.

It’s also one of the few places where I’ve been completely honest. No performance, no editing—just me showing up as I am. That makes it deeply personal in a way that’s hard to replicate anywhere else.

So when I say it’s my favorite tangible object, it’s not about the Bible itself being pink or artistic—it’s because it carries the history of my walk with God. It’s worn in all the right ways. It’s lived in. And it reminds me who He is, and who I am in Him.

Multiple System Atrophy

I wish I could pick

Hannah

This morning I sat perched in my bathroom and let out a raspy wail. “Ugh, I just wish I could plan a fun and special thing and not have this disease wreck the day and ruin it for me!” My “woe is me” meter was on full tilt as I lamented the evening I had conjured up in my head, even though I still had a solid eight hours until go time.

That’s right where the enemy would have us be, isn’t it? Catastrophizing every ordinary miracle today has to offer because we haven’t taken a moment to stop, give thanks, pray for mercy, and trust that our good Father wants us to experience the good parts just as much as we want them ourselves.

I realized, as I sat there staring at my own tired reflection, that I had already decided how the day would end before it had even begun. I had written a story of disappointment, frustration, and limitation — and then handed it the microphone before God even had a chance to speak into it.

How often do we do that?

We trade possibility for prediction.

We surrender joy to fear.

We allow what might happen to rob us of what is happening.

Illness has a way of shrinking the horizon. It teaches you to measure life in energy units, in symptom flares, in “maybe” and “we’ll see.” But what it doesn’t get to do is dictate where hope lives. That part still belongs to God. And, if I’m honest, sometimes it belongs to my willingness to loosen my grip on expectations.

The truth is, special moments have rarely unfolded the way I imagined them even before sickness entered the room. The most meaningful memories in my life were almost always disguised as interruptions, detours, or completely rewritten plans. Somehow, God has always had a way of sneaking beauty into spaces I was convinced were ruined.

So I sat there and did the only thing I knew to do. I prayed a very unpolished, very honest prayer.

“Lord, I’m scared this day will fall apart. I’m frustrated that my body feels like it has veto power over things my heart longs for. But I trust You more than I trust my fears. Help me to receive whatever today holds — the joy, the disappointment, the laughter, the fatigue — as something You can still use for good.”

Peace didn’t rush in like a tidal wave. It rarely does. Instead, it trickled in like a slow drip from a faucet that someone finally remembered to turn off. My shoulders softened. My breathing steadied. The day didn’t suddenly become guaranteed or predictable, but it became held. And that is often better.

Maybe the miracle isn’t that our plans go perfectly.

Maybe the miracle is that joy can still show up in imperfect circumstances.

Maybe the miracle is that God wastes nothing — not the setbacks, not the symptoms, not even the bathroom floor meltdowns before noon.

I don’t know how tonight will unfold. If I’m honest, part of me still wants to script it, control it, and protect it from disappointment. But I’m learning that tightly gripping expectations often squeezes the life out of the very moments I’m trying to preserve.

So today, I’m practicing open hands.

Open hands to receive whatever strength God gives.

Open hands to release whatever I cannot control.

Open hands to hold joy gently, without demanding it perform perfectly.

If you’re living in a body, a season, or a circumstance that feels unpredictable, maybe this is your reminder too: you are allowed to hope without guarantees. You are allowed to celebrate even when outcomes feel uncertain. You are allowed to believe that goodness can coexist with limitation.

Our Father is not waiting at the finish line of a perfect day to meet us there. He is walking beside us through the messy, rewritten, grace-filled middle of it all.

And sometimes, that is where the best parts are hiding.

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.