Tag: Motor Neuron Disease

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.

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!

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.

Gratitude

For Such a Time as This

Hannah

Throughout the debilitating process of this disease I admit I have wondered from time to time what good this trial could possibly teach me. It seems unfair. I have been wrestling with this question more so as I see the effect it has on my littles and my husband lately. What good is in it for them? God promised to use our circumstances for good (Romans 8:28). As the resulting wounds have grown deeper I have been asking more often; what are you doing God??

In typical fashion, He is faithful to point out His hand in my life and quiet my unbelief. Esther 4:14 runs through my brain on a constant loop; “perhaps you were created for such a time as this.” Then I was brought to John 9. Jesus and friends are with a blind man, and His friends asked why this man was born blind; was it because of something he or his parents did? The answer Jesus gave is everything. He replied, “No, this happened so the power of God can be seen in him.”

Wow. Talk about humbling. To think that God thinks enough of me to use me to reflect His power. This does not make the journey easier, but it makes it worth it. When I’m tempted to complain and long for the healing of Heaven I want to remember that His power is at work through me. It really is obvious, but sometimes I’m a slow learner. Look at how long I have been fighting! The average life expectancy with this is 6-10 years… I am in year 12! Why would God keep me here and allow the suffering to continue if not to bring glory? If you need proof of miracles well, you’re looking at one!

To God be all glory for allowing me the gift of being His and giving me a purpose beyond all I could imagine.

Christmas, Uncategorized

Enough

Hannah

I hardly have any photos from Christmas this year. Christmas Eve I missed our candlelight service at church because I was too weak to sit up or stay awake.

Our candlelit tradition of “shepherds’ meal” on the night of Christmas Eve only kinda-sorta happened, because I wasn’t well enough to remember, or to get up and make different choices of soup and bread like I usually do. The night was rescued by a frozen tub of tomato soup found in the bottom of the freezer, and the calming glow of our advent candles. I lay in my hospital bed in the next room listening to the chatter, and chiming in silly questions like “what ever happened to the sheep after the shepherds left to see baby Jesus?”

Late on Christmas Eve I still hadn’t managed to wrap more than 4 gifts to tuck under the tree. Anyone who knows my personality knows that is the polar opposite of my checklists and neat packages tied with string weeks before December 25th. My husband and daughter came through by busting out all the wrapping (with the help of a healthy stack of gift bags) in the late hours as Christmas Eve melted into Christmas morning.

Christmas morning… well, really most of the whole day is a blur with more chunks missing than I’d like to admit.

What I /do/ know is all four of my babes were under one roof again.

My silly dream of a Hannah tree finally happened, in all her pink glittery glory.

Even through sickness and pain, the cozy warmth of a crackling fire still brought with it the memories of Christmases past, and the anticipation of more to come.

Zero kinds of Christmas cookies or fudge happened, but “Kitchen Trash” sure as heck still did.

I did not capture my traditional “photo every hour” series of Christmas Day, but I did manage to grab the still-frames of the most important moments of joy and togetherness.

And as the day wound down and the doubts crept in with the quiet, my wise sweet little sister typed out the balm that my soul so badly needed; I need to adjust my definition of the word tradition from “every,” and “have to,” to “some years,” and “like to.”

When I sifted through my unmet expectations I found that though I didn’t get the Christmas pickle unpacked this year, there was just as much joy and gratitude and wonder in the exchanging of the packages. And even though we weren’t able to visit the lights at the bell tower or drive the neighborhoods looking for the best displays, the twinkling in our own window was enough to cast that magical glow that makes you feel warm with anticipation.

This Christmas started out feeling like I dropped more balls than I caught, but as the day unfolded and the story of the Light coming into this dark world permeated each of our moments and traditions, all of it was suddenly more than enough. I was enough. Because He is more than enough.

Uncategorized

Exhaustion

Hannah

I’m grumpy. Last night I threw every trick I had at my pain. Every essential oil, medication, balm, massage, heavy blanket, heat, and desperate prayer. Yet it managed to throb steadily on through the night hours and into the morning without a moment of drifting off to sleep. Now as I count the minutes until my alarm goes off, it hardly seems worth trying to snatch any last seconds of shut eye against the roar of pain. I’m sure each of you have wrestled sleep deprivation at one time or another, and you know how your usual problems seem 10 times harder when you’re running on coffee beans and daydreams. So yeah, I’m grumpy and I know it and I’m praying sweet salvation over my soul.

Today I will need the strength to care for a husband who isn’t feeling well. I’ll need the wisdom to meet with a school counselor to plan the next semester in a way that’s most beneficial for my child. I’ll need the patience to help with missing homework, and the clarity to stay alert while driving kids here and there. It would be easy to despair before the day has even begun.

I’m reminding myself I am carried though. Carried by my Father who will never leave me, and the prayers of my people who never stop helping me press on. Please meet me there. Meet me in the fight, the grueling repetition, and the endless prayers, because goodness knows they’re needed today.

Uncategorized

Slipping & Held

Hannah

I wrote this post a few years back, but came across it in my drafts today…

Sometimes it gets easy to not really think about being sick. In the day to day my normal becomes so routine that it just feels like things have always been this way. Then there are days like yesterday that have an ice cold slap kind of way of reminding me the fragility of my every day.

In the cold drizzle of early morning Mark drove me to my neurologist’s office for my 3 month Botox appointment. My doctor is one of the kindest I’ve met. His gentle demeanor and tender concern have a way of making me feel seen, remembered, heard, and valued. We began the appointment as we always do, bringing him up to speed about any changes in my condition since my last visit. This is where I’m reminded that this disease presses on. We compare my movements and symptoms, and he questions me about my cognition and memory. I have to defer to Mark because, well, I can’t remember.

“How does she seem to be doing?”

Mark’s eyes dart to mine, and I sense a hesitation before he answers.

“She’s slipping since the last time we were here.”

I listened as my groom of 21 years explained how I repeat myself, asking the same questions and going through the same motions over and over without any clue that I’m doing it. My face flushed with embarrassment as I squealed, “Babe! You should tell me when I’m doing that!” And his reply highlights the kind of gentle and selfless loving he showers me with day in and day out. “Telling you would not change anything, it would just make you feel bad.” He went on to explain to my doctor how he and the kids patiently listen to me say and do things multiple times and they play along like it’s the first time so that I can feel more normal and less afraid. And that, my friends is the truest love, and I am the blessedest blessed for having a man who is so thoughtful with my heart as we wade through these sometimes intimidating waters.

Uncategorized

Invisible

Hannah

In recent years thanks to lots of advocating by people with various handicap challenges as well as rules set by the ADA there has been a shift in many communities regarding the inclusion of people who can’t quite do things like everyone else. I both appreciate and applaud these efforts, because as a wheelchair user I can appreciate the many ways that I am able to participate because of the ways things have changed in recent years. What about when it’s not about the curbs and ramps though; what happens when it’s the people surrounding you that are the stumbling blocks to feeling welcomed and included?

For the better part of the past 5 years I have had to use a wheelchair when venturing outside of my home. While I can get away with a cane or “furniture surfing” around my house, the weakness, spasticity, and shortness of breath that kicks in after a very short distance is just not feasible to going out places away from home. So we’ve just packed me and my wheels into our van and gone about life as normally as we can. Recently though I’ve noticed the closed doors aren’t just the ones without a handicapped button.

A few weeks ago I was volunteering; wearing my badge and my shirt setting me apart as someone who could help, while sitting in my wheelchair. Two others were helping with me, and I noticed that regardless of how I engaged or smiled or said hello to people, if they needed help with something they went to one of the other two volunteers 100% of the time. I couldn’t figure it out; not seeing me there wasn’t a plausible explanation. Did they see me and just assume I was incapable because of my limitations? Did they just want to avoid a situation that felt awkward to them?

Fast forward a few weeks to when I attended a social event with several other people I knew. While two people said a brief comment or question to me, there was no one else in the entire group of people who spoke to me that day; not even a hello. I found myself frequently looking at the clock anticipating the time I could get out of there because it felt so incredibly awkward.

Perhaps someday I’ll be brave enough to ask people what it is that prevents them from engaging with me. I feel like even as an introverted extrovert this would help give me some perspective on how to help people see the real me. For now though it stings a bit. I find myself anxious about attending events and gatherings. I catch myself questioning what value I offer people, and that’s not somewhere I want to stay.

Fortunately I know who I am to God, and I’m confident he accepts and wants me regardless of my shortcomings, and despite my bumpy hard story. I know He is not afraid to meet me in my mess, and so I cling to Him there while I ask for the courage to show others who I am and what I can be besides my illness. God tells me I’m worth knowing, and His opinion is the one I hold closest when the reactions of the world around me sting.

Have you been in situations where you feel like you’re not noticed or wanted? How do you handle those closed doors that don’t seem to have a way in? Do you know your worth, other than what the world has to say about it?