Category: Multiple System Atrophy

Multiple System Atrophy, Uncategorized

Losing Vision, Finding My Offering

Hannah

If you watched my video this week about getting new glasses, you undoubtedly noticed its lighthearted tone . I try to add an underscore of humor to all of my videos there, since the goal is education and awareness about MSA, not to garner pity or sad feelings from people. In reality, this latest change for me has been a little more heavy than humorous.

It started when I noticed my vision had pretty rapidly gotten very blurry. I wondered if it was a side effect of one of my medications, or if the slight glasses prescription I already have needed to be updated. When I went in for an eye exam, I learned it was neither. The reason for the profound vision loss I was experiencing was because my disease has weakened the muscles controlling my eyes so much that the blurriness I have been noticing is actually me seeing double.

The doctor that saw me that day was so compassionate and kind-hearted; I could tell he truly cared about my situation and wanted the best outcome possible for me. I sat staring through the giant robot-thingie while he dialed in lens after lens, trying to make it strong enough to correct my vision. It got better— the two birthday candles that started a few hand widths apart from each other moved in closer and closer, but even at top strength the candles never merged into one.

So I left the office with a new pair of thick bifocal glasses, feeling very much like the rug had been yanked out from under me by this new development that had not even been on my radar. And truth be told, even with my new specs there is a lot that has been lost as far as what I can see in detail, which in turn affects what I can do.

It was a disheartening blow at first, that left me wondering what I had to offer now. My Etsy business would be affected, my art, my writing… what was left for me to give to the people I love and care about?

For a little while, my mind went to the same place it always used to go when something was taken away from me: What am I still useful for?

Illness has a way of asking that question over and over again. Every new limitation feels like another subtraction sign—another thing crossed off the list of what you once could do.

And if I’m honest, I realized something in the middle of that discouragement: somewhere along the way, I had quietly started believing that my value to God and to other people was tied to my abilities. My productivity. My output. What I could make, build, write, organize, or contribute.

But that has never actually been the way God works.

God never needed my abilities.

He never needed my Etsy shop, or my artwork, or my words, or my capacity to juggle responsibilities and keep producing things that look impressive on the outside. None of those things were ever the offering He was asking for.

What He wanted was always much simpler—and much harder.

He wanted my heart.

When I started reading through Scripture again with this in mind, it was everywhere. Over and over, God makes it clear that He is not impressed with human strength or skill. In fact, He seems to go out of His way to work through weakness.

He chose shepherd boys, stutterers, widows with two coins, fishermen with no education, and people who openly admitted they were afraid and inadequate. Again and again, God reduced the resources so that no one could mistake where the power came from.

Which means my declining abilities are not a surprise to Him.

They don’t disqualify me.

If anything, they strip away the illusion that I ever had something impressive to bring to the table in the first place.

The truth is that my offering was never supposed to be what I could do.

My offering was always supposed to be me.

My trust.

My willingness.

My obedience in whatever small space I’m given today.

The older I get and the more this disease takes, the more God keeps narrowing things down to that single point: Will you still give me your heart when the things you used to rely on are gone?

And the surprising thing is that there is actually a lot of freedom in that question.

Because if God only wanted my abilities, I would eventually fail Him. Bodies break. Energy fades. Vision blurs. Talents come and go.

But if what He wants is my heart, that is something illness cannot take away.

Even on the days when my eyes won’t cooperate, when the candles refuse to merge into one clear image, when I can’t do half the things I used to do… I still have something to give.

I can still choose to trust Him.

I can still choose to love people well.

I can still offer the small, quiet faithfulness of a life surrendered.

And maybe that was the lesson hiding inside this unexpected trip to the eye doctor.

My vision may be fading in ways I never anticipated.

But in a strange way, the picture itself is becoming clearer.

God never needed my abilities.

He just wanted my heart.

Multiple System Atrophy

Losing Vision, Finding my Offering

Hannah

If you watched my video this week about getting new glasses, you probably noticed the lighthearted tone. I try to keep humor woven into my videos because the goal is education and awareness about Multiple System Atrophy (MSA)—not to make people feel sorry for me.

But the truth is, this latest change has felt a little heavier than humorous.

It started when I noticed my vision had gotten blurry very quickly. I wondered if it might be a side effect of one of my medications, or maybe my slight glasses prescription just needed updating. When I went in for an eye exam, I learned it was neither.

The reason for the vision problems was that my disease has weakened the muscles that control my eyes. The blurriness I was experiencing wasn’t actually blur at all—it was double vision.

The doctor who saw me that day was incredibly kind and compassionate. I could tell he genuinely cared about what I was facing and wanted the best outcome possible for me. I sat there staring into the giant robot-looking machine while he dialed lens after lens into place, trying to make the prescription strong enough to correct my sight.

It got better.

The two birthday candles that started several hand widths apart slowly moved closer and closer together.

But even at the strongest setting… they never merged into one.

I left the office with a pair of thick bifocal glasses and the unsettling feeling that the rug had just been pulled out from under me. This development hadn’t even been on my radar. And the truth is, even with the new glasses there is still a lot that has been lost in terms of what I can see clearly—and that affects what I can do.

At first it was a discouraging blow.

My Etsy business could be affected. My art might be harder. My writing could become more difficult. I found myself wondering a question that probably sits quietly in many of our hearts at one time or another:

What do I have to offer now?

When our abilities begin to shrink, it’s easy to feel like our usefulness is shrinking too. Our culture trains us to believe that our value lies in our productivity, our skills, our accomplishments, and the things we create.

But the longer I walk this road, the more I realize something important:

God has never asked me to offer Him my abilities. He has always asked for my heart.

In the Old Testament sacrificial system, people brought offerings to the altar—animals, grain, oil, wine. But even then, God repeatedly reminded His people that the physical offering wasn’t the thing He truly desired.

He wanted their hearts.

Scripture says that “a broken and contrite heart… you will not despise.” (Psalm 51:17)

In other words, the offering God values most is not what we produce, but who we surrender.

That realization has been quietly reshaping the way I think about loss.

If my art becomes harder… I can still love people.

If my business slows down… I can still encourage someone.

If my vision fades further… my heart can still belong completely to God.

None of those things require perfect eyesight, steady hands, or impressive talent.

They simply require willingness.

So maybe the question isn’t “What do I still have to offer?”

Maybe the real question is:

“Am I willing to place my heart on the altar?”

Because that offering never becomes obsolete.

It never weakens with disease.

It never diminishes with age or limitation.

And it is the one offering God has always wanted most.

So if your abilities feel smaller than they used to… if illness, loss, or circumstances have taken things from you that you once used to serve others or serve God… take heart.

Your most valuable offering has never been your strength.

It has always been you.

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.

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.