Tag: Multiple System Atrophy

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Walking Each Other Home

Hannah

To my ride-or-die friends who have walked with me through valley and mountain—

I know how deeply your beautiful hearts are wrestling with what you are being asked to do — to love so fiercely in friendship, and then hand me back to Jesus. To surrender our journey just as it felt like it was only beginning. How does one even begin to do that?

We have shared life together for about as long as the disciples sat at Jesus’ feet. Imagine how they must have felt, thinking their journey had only just begun — how desperate they must have been at the thought of losing their closest friend.

But as the disciples learned — and as you will too — God never asks us to walk alone. His Spirit of grace, His face in your friends, His voice in your heart, will comfort and guide you.

Yes, there will be tears. But there will never be a loss of hope or joy. The planting of you in my life is coming to bloom. We have loved deeply and served one another through many seasons, each with its own beautiful purpose.

Though I may slip away from this celebration a little early, it is only to join an even grander, more glorious one.

I ask that you continue in what we have learned together through this suffering: to show up, to love the brokenhearted, to carry hope into weary places. There are so many hurting hearts all around who need the same friendship, encouragement, and relentless pointing to Jesus that you have given me.

Our story doesn’t end here.

Go. Love fiercely. Serve joyfully. Laugh and grow richly, with hearts full of gratitude for the gift of friendship we are blessed to share.

I love you buckets. Xoxo

~Hannah

faith

Update and Prayer

Hannah

This past week has been scary and challenging. Saturday morning I started my IV infusion and it didn’t take long to realize I had an infection brewing in my port. By the time my wingman took a quick shower to get me to the ER I was wracked with shivering, puking, had pain everywhere, had spiked a fever, and my heart was thumping along over 130 while my blood pressure plummeted. It was a blessing we arrived at the hospital when they had just emptied 8 beds. As soon as they checked my vitals they called a sepsis alert and had me back in a room. Sepsis is one of the worst feelings to go through physically for me.

The next several days were filled with IV antibiotics, blood draws, beeping alarms, a transfer to ICU as my blood pressure dropped into the 70’s over 30’s, more medications to fix all of that, a transfer back to the regular floor, and then a rather abrupt discharge from the hospital when we least expected it.

During one of the worst days while I mostly lay still in bed, unable to interact much with the world around me, I realized something about my prayer life. When I’m the sickest of sick I don’t really pray. I try, but it’s hard to keep focused with so much barraging my weary body. My cell phone was clipped near my head during this phase, so I was able to turn on my “Fight Songs” playlist, and that’s when I realized that the worship lyrics are my prayers in times like this.

Lying there unable to string thoughts together, I would let the words of the songs wash over me, and I would repeat them in my mind with a “please Jesus, yes Jesus,” but I couldn’t pray for myself. This is when I was able to rest in knowing that so many people were already praying on my behalf, and it was such a comfort. Thank you for standing in the gap for me when I couldn’t, and for praying me back home. I am gaining my strength and getting ready to slay all day with this sunny weather!

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The Fight

Hannah

The past few days have been a hard-fought fight with pain. Not super proud of it, but I’ve found myself begging for mercy; that Jesus would just take me home and free me from this. These prayers then make me feel sad, and I start thinking what that would really look like for me and my people.

My mind wanders to the verse that talks about the blessings given to those who are obedient to God. “May you see your children’s children (psalm 128).” So if I don’t get to see my grandchildren, does that mean God is a liar? Or should I just skip over the verses like this?

It’s tempting to see scripture through the lens of my own emotions and experiences, but I am learning to look at God’s promises through the lens of the Gospel instead, and the Gospel tells me he keeps his promises. If I don’t get to experience these promises here on earth then I must believe these promises are pointing me to my true home, Heaven, where these promises will be fulfilled.

Matthew 19:28 tells me that for every promise I miss out on here on earth, I will receive a hundred times that along with eternal life. His heart is not dishonest, but generous in all that he promises and gives. Yes, I still grieve over the things and people I will miss out on here, but I believe God wrote my story, and is telling his Story through mine, and that is important enough that it is worth the losses experienced in the telling of it.

God tells me that the sadness and suffering I experience here on earth are nothing compared to the glory that awaits me in Heaven, and that his love is better than the best of what this world has to offer me. When my most cherished things in this life are taken from me, more space is created in my heart for him to give me far more than I could ever imagine, for all of eternity. And that, my friends, is worth my fight.

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Talking Points Podcast

Hannah

My church recently invited me to be a guest on their podcast, called Talking Points. I’m including a link if you’d like to listen to it, and you can also find many of their other podcasts on meaningful and important topics. If you give it a listen, let me know your thoughts!

UBC Talking Points Podcast

(Two of my favorites are the ones about worship. Check them out too!)

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Collecting Scars

Hannah

This week in my reel of photo memories this one popped up…

Immediately the words to Ellie Holcomb‘s song, “Just As Good” started echoing in my mind, where they lingered for the rest of the day. “Oh every ebeneezer points to where my help comes from.”

Who would have thought these painful slices would become my stones of remembrance?

The many scars my body carries tell a story of God’s divine assistance and mercy. Times when I have been wounded, but He has allowed healing. Some scars run deeper than others. Some are still in the process of healing, but all of them come with a story of challenge that was met with grace and healing.

At times I feel embarrassed by my wounds, but reality is that these and other marks paint a connect-the-dots picture of my hard-fought story—right on my own skin. They are reminders that I have lived a life not of safety, but of the opposite. I’ve pushed myself, and I’ve been pushed, sometimes too far, and I would not have it any other way.

When I see my scars, I remember the difficult challenges, and the opening of my hands to surrender to an attitude of trust. I see the reminders of accidents and falls where I couldn’t hold myself up, but I was still held. I see evidence of a plot line that included my defeat, but instead is a story of survival.

I am drawn to the lyrics of the song Scars by I Am They. “So I’m thankful for the scars ‘Cause without them I wouldn’t know Your heart, And I know they’ll always tell of who You are, so forever I am thankful for the scars.”

It takes some hard-fought determination to be able to see these red and white squiggles carved into my flesh as accomplishments, but that is what has gently happened as the number of my scars has ticked up with each passing year.

I can choose to let my scars only remind me of the pain, or I can let them remind me of the scarred hands that payed my ransom.

Tracing my finger over these raised little lines I’m struck by immense truths. A stunning canvas of struggle, embodied suspense. In every imperfection, strength that can be found; the echoes of hardship that shapes my heart and mind to know and trust a good Father who is writing a good story for me.

Please leave me a comment, it lets me know you’re listening!

endurance

Lament

Hannah

I reach my desperate hands toward the heavens from where my help comes. I cry out to God because I know He will hear me.

How long God, will I watch my family crumble? Why do each of my children have to suffer so hard? How long will we wait for our redemption story? Have you forgotten us?

Please strengthen my hope, it is weary within me. Please redeem your people with your mighty hand. Restore to us the years the locusts have eaten.

I remember full well the days you stood me firm on a mountaintop. I remember your deep compassion for me, and how you saw something in me I could not yet. I remember the glimpse of my story you gave me, and it is a good, good story.

I will continually praise you, because not a moment of my life is hidden from you. You know full well what the finished picture will look like, and you are trustworthy to take me there. My thoughts are but chatter compared to the steadiness of your all-knowing mind. You have led me this far, and I will yet trust your kind and compassionate heart to bring my story to completion.

Thank you friends, near and far, who have prayed and loved and carried me through this hard few weeks. May God richly reward you for your faithful kindness.

daily graces

The Most Difficult Gift

Hannah

I love giving gifts, and I enjoy receiving them, yet I struggle to accept one of the greatest gifts offered to me; the gift of receiving. It is a humbling place to exist, needing others’ love and care, and I find it difficult at times. I have realized because of my love of giving that it takes far more grace to receive than it does to give.

After years of priding myself on my strength, being humble is difficult for me. It’s hard to ask for help. Do you find yourself agreeing with me? Yet we are all in need in one way or another; broken and struggling but putting on the best brave face we can muster just to prove we can go it alone.

In this long, loooooong season of needing to accept the help of others I find that the luster of having it all together is wearing thin. I see the depth of brokenness within me and around me, and I long to connect in my brokenness. I long to be known and to know the true hearts of others around me.

At my core I am a doer. A server, a giver, a wear-myself-down-to-nothing all in the name of love kind of girl. Accolades for me, right? What if I told you it’s just a ruse for my pride and need for control? Control that blares I’m not needy, I can do it myself, I don’t need anyone— unless someone needs /me/, and then I’m there.

I have spoken with enough people to know that I am not alone in this. Well, maybe I’m alone in admitting it, but I’m not alone in feeling it.

For 35 years I basked on the pedestal of being able-bodied, capable of doing anything that needed doing. I spent decades believing my purpose was to wear myself out pleasing those around me. I knew the truth, but it was easy to ignore when I had strength on my side.

Culture convinces us that our success is measured by our strength. It’s a bold-faced lie that what we are capable of is what we are loved for. This isn’t living in the truth of the gospel. Thankfully God is continually gracious to keep showing me the sin of my pride and need for control. He patiently loves me back to the foot of the cross and reminds me of my need to be needy and not just needed.

It took the stripping of my strength by this awful disease to expose this to me, and I still have to seek grace often because my heart’s bent is on proving myself instead of letting myself be loved in my neediness. Jesus is breaking me of my strength and showing me the grace to be found in embracing my weakness, and the joy that it gives others who want to help.

I hope that you can find this truth in your own life. Don’t settle for being loved for your abilities instead of being loved for your heart. Resist the temptation to keep yourself busy in order to feel accepted. Look for the ways to slow and find your significance in something more real. Then notice how you find peace and rest in giving others the gift of helping.

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Speechless

Hannah

Here is a graphic about my illness to give you an idea of the things it has, does, and will affect.

Inability to verbally communicate.

I have been a spectator to this with my friend who has ALS, and it is hard. Talk about a massive loss of control. Imagine the amount of having to slow down and let your actions speak louder than your words, or in this case instead of your words.

Over the past few months my voice has begun to weaken. At times it’s raspy, or sounds like I’m hoarse or getting sick. With this new development my speech therapist started the process for me to get an AAC device as an alternative means of communication. Control Bionics and my speech therapist have been wonderful to work with. They were very efficient at getting me set up with a device that will meet my current needs, as well as my needs as my condition continues to change.

At first, life with my AAC was about getting familiar with it and practicing navigating between the pages and words and phrases to best communicate. My device has sensors on the front that either detect my eye movements, or a slight muscle movement of my hand, and it selects the letters or phrases I want to say. It’s amazing we have this kind of technology, and I’m humbly grateful to be able to use it. I even had the opportunity to bank my own voice so that when it speaks for me you will still hear my voice. This part is expensive, but we are looking for solutions!

This past week my voice has taken a turn. One morning I woke up and barely had a voice at all. Some of it returned, but I now sound like a quiet, scratchy record with the occasional skip where nothing comes out at all. Truthfully it’s been a little unnerving seeing how fast I could be plunged into silence.

Hardly anyone can hear me anymore, and the effort and breath it takes to make my voice loud enough to project across a room is exhausting and frustrating. I wasn’t expecting this part to be so hard, but it’s hitting me right in a tender spot I didn’t know I had. I feel panicked to not be able to explain myself, threatened by the thought of not being able to call out and get my kids’ or caregivers’ attention. And if you see me singing along in church I’ve fooled you. I’m lip-syncing.

Another practice in total surrender; in cupping my hands around what’s left and holding out all I have to offer. A chance to do more listening than talking. Another practice in giving up what was and adjusting to what is, and believing that regardless of the journey or the outcome, I am held.