Tag: MSA

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.

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An Honored Rite of Passage

Hannah

When I met with my counselor recently she said, “If you were given the space and peace I think you would succumb to your illness very quickly, but out of sheer stubbornness you continue to exceed all of our expectations.” She’s not wrong. As far as the stubbornness scale goes I’m way up there near the top, and I do have quite a number of things I want to feel like are going to be ok in my absence. I realize that may sound arrogant, and some of it probably is, but I also think most of us if we accepted that our time is limited have things we want to settle before we leave this world.

I think there are pros and cons to this stubbornness to cling to life. As a culture we really look at death in a strange light considering it is something that happens to all of us eventually. We measure the length of a person’s life and state that they were taken too soon, or they died much too young, but what if it was exactly the right time? What if your story hangs heavy on the thread of /this/season, /this/ loss?

We seem to live in a mutually accepted denial of the fact that we and those we love have an expiration date. This has a tendency to rob us of a joy and peace we can experience in the face of anticipated loss. We can all probably find a little purpose by leaning in and loving like crazy and then graciously walking our loved ones Home with our presence, our honesty, and our understanding.

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Words with Weight

Hannah

At the end of each year as I spend some time reflecting on the year before, inevitably a new word saturated in meaning is impressed upon my heart for the coming year. That word remains the theme of my photo album, and the compass to how I hope to lead my family to grow throughout the year.

This past year our word was Shalom. Many of you may already know that Shalom means peace. I was longing for peace at the beginning of this year, but it went even further to define our year as not just an absence of war, but an overall sense of fullness and completeness in mind, body, and estate. To make full restitution; RESTORE! This brought to mind one of my favorite verses, Joel 2:25. “I will repay you for the years the locusts have eaten.”

Every time I passed the 6 letters framed upon our front door I prayed for peace both within our home, and outside of its doors. I prayed that God’s peace would bring a sense of completeness to our home; to our relationships, our walks with God, and our friendships with others.

As 2024 drew to a close and I started seeking and praying for our word of this new year I began seeing it on repeat, the word chosen for this year. This year’s word is JOY. I anticipate we will be blessed with an abundance of joy, and we will also see it woven in and out of many of our daily experiences. Perhaps we will learn better how to give joy, and we will become accustomed to receiving joy even in circumstances we might not think to look!

As we wind down our time in Shalom, though still activity seeking where we can give and take peace, I excitedly welcome this 2025 season of all things Joy!

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.

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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.

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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?

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What Not To Say: Part 1

Hannah

Through my own good/hard story, and the suffering I have walked with family and friends, there have been some important nuggets I have learned along the way that I have tucked away in my heart to help me be a better friend/sister/daughter when I am with others who are really going through it. For a long time I have mulled over sharing these, even entertaining publishing a booklet something along the lines of “How to Help Someone You Love Through Grief.” Because truly, there are many things that unless you have walked through it you simply just don’t know, and that’s not always your fault.

I decided with the help of some of my closest people who have or are walking a hard road to share some of these bits of wisdom. And please, if you have had an experience you feel is worth adding; send me a message about it! I would love to broaden my perspective and help prepare others to respond with kindness and compassion.

What not to say…

When my friend and pastor’s wife was dying of breast cancer we had many honest conversations in the inviting safety of her cozy bed. One day one of the things she said to me was, “it’s so weird when people say to me ‘well you look good!’ As if somehow looking good negates the fact that this cancer is growing rampantly throughout the corners of my body daily.”

At the time I shared empathy with her, but in years following as I have been down the road of my own hard diagnosis, I have come to understand this even more than I could have imagined. It happens to me all. the. time. Especially true following hospitalizations or when experiencing down ticks in my level of functioning.

Two things come to mind when people exclaim to me, “well you sure *look* great!” in the midst of me feeling anything but. The first is that it somehow diminishes the validity of the illness I deal with every day, as well as the ever-impending life expectancy. When I hear people say this it feels like, “well it can’t that bad,” or “you must not really be /that/ sick,” or “you look good, so you must be ok!” Hearing how amazing I look the Sunday after a hospital discharge also manages to plant a tiny seed of self-consciousness… “well goodness, if I look so good now gracious knows how awful I must have looked three days ago when I didn’t have makeup on.”

The other thing to know is that when it is possible, the days I feel the worst are often the days I try my hardest to look my best, because you know, we all have this insecurity about gut-level honesty and just showing up unshowered or unkempt, in the comfy clothes that give our hurting bodies permission to feel however they are feeling.

The way I look on the outside is typically not a great representation of how I’m feeling on the inside, so keep that in mind when you’re having interactions with people who are battling illness for the long haul.

Not to say don’t give a compliment… I appreciate a good compliment as much as the next person! However, instead of a statement that lumps together how I look in spite of my illness, try to separate the two, like: “your hair sure looks good done that way,” or “your eyes really light up when you wear that color!” Approaching things this way removes the impression for a sick person that people’s barometer for how sick we must be is related to how put-together we look.

A friend of mine who has ALS invited my family and I to accompany her to the zoo recently. When she met up with us she looked amazing. She was pushing her wheelchair as a walker; fighting for each step while she is able, but understanding she would likely need help as the day wore on.

I commented on how good she looked; I told her how pretty she was in dangly silver earrings, and I gushed over how the lipstick she chose was the perfect vibrant shade for her brilliant smile. I knew, however, from our conversations the evening prior that she was fighting for energy and rest, and likely didn’t feel as perky as she looked. I chose my words carefully to compliment and encourage her without diminishing the elephant in the room- that despite her beauty, she is in the fight for her life.

Maybe that all sounds ridiculous, but I promise you it’s a whole thing. I’ve heard it from others, and I’ve experienced it myself.

Now you know a little something that will help grow your empathy and sensitivity to someone living with an ongoing illness! What are your thoughts?

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The Last Good Breath

Hannah

January 10th had been a good day. I had a few visitors, which always lifts my spirits, I had been working on a few orders for my Etsy shop, and we were getting back into a routine again after Christmas break. I went to bed a little early because I had worn myself out a bit.

A few hours later I woke unable to use my muscles to get a big enough breath. I couldn’t swallow, couldn’t breath, and knew I needed help fast. I quickly woke Mark, and motioned for help, and then got far away from our sleeping littlest hoping not to frighten him awake. That was about all I had left, and I collapsed on the floor, trying to conserve energy. It wasn’t long before everything faded to gray and I could hardly hear.

I was vaguely aware of the paramedic boots that tromped across the floor and scooped me up, carrying me into the night air. The next thing I was aware of as the stretcher bounced across the potholes of town was the excruciating pain and sickness that crept over me as the paramedic pushed a full dose of Narcan, throwing my body into instant withdrawal from my chronic pain medications, bringing on a slew of muscle spasms, and constant vomiting. My fight to breathe became more desperate as I choked on my own vomit gasping for each breath.

After some agonizing time in the ER, I lost all touch with reality, and woke later the next day in the ICU, biting and choking on the hard breathing tube that was down my throat, my hair a mess of blood and vomit. My respiratory muscles had weakened to the point that I could not breathe as deeply as my body needed me to, and I had been sedated and intubated.

We had already been having conversations with my pulmonologist and met with the surgeon to discuss it being time for a tracheostomy, so it was natural for these topics to surface again. They actually had time to do the surgery for me the next day. At first I objected, panicked at the rush of it all, and the lack of having my mind wrapped around it. After some reassuring conversations with friends who are doctors though, it was clear this timing was divine, and it was time to go ahead. I asked to be further sedated until surgery, so I didn’t have to spend the long hours fighting the tube.

Along with my wingman, my “Mama Sandy” was there with me to encourage and read scripture with me, and despite the embarrassing state of myself, I welcomed the presence of my dear pastor as he came to pray with me.

Despite the rush of it all, I felt peace; held in my fear and my questions, and comforted that God was walking every step along with me.

The wait for surgery felt long, but finally it was time, and I smooched my hubby as they rolled me away for a new airway. I was immediately more comfortable upon waking; the tubes removed from my mouth and throat, and now just one directly into my airway through the front of my neck.

A few days later I was transferred to a rehabilitation hospital, where I have remained for the past two weeks. It has been steps forward and steps back, and a tremendous amount of boredom and missing my babies, but each day is one day closer to home and this new way of life. My trach and vent have provided me much more relaxation with my breathing, and as we learn the routines it brings us more confidence managing this ourselves at home.

I cannot wait to get back to my family and my tribe… that comes next!