Tag: ALS

endurance

Heavy

Hannah

The past few weeks have felt HEAVY. One of my dear friends was diagnosed with lymphoma. Chemo has started, and with it the constant fight against weakness, sickness, feeling worse than the actual cancer makes you feel. It doesn’t seem fair.

Another of my friends was also diagnosed with lymphoma, and we are in the waiting of what treatment is going to look like. A period of time suspended, feeling strangely well despite the cancer that has invaded many corners.

My sweet friend with ALS had a bad fall and ended up with a broken shoulder. A long road ahead of healing and rehab and wondering if strength will come back enough to return to her home, or if a new, harder season is beginning.

Friends with children who are trudging through broken places, with exhausted parents who aren’t sure where to turn next, who just want to shoulder these trials so their children don’t have to.

My kids are struggling with some painful battles, and I have to stand back in silent prayer and watch them fight through it, knowing there is nothing I can do to take the pain from them; it’s a road they have to walk.

My husband is on several weeks of travel, which always feels lonely and scary and takes a cumulative toll on my strength. And of course it is always when he is away that Murphy shows up in all the ways like car trouble and kid injuries and leaks under the kitchen cabinet.

It all feels so heavy; suffocating at times. Multiple times this week I have found myself in tears, overwhelmed by the sheer weight of it all. Sometimes I have forgotten my /first/ defense is to reach for my Heavenly Father. I finally remembered that in a simple prayer yesterday; “please send help.” I’m sure you know even before the end of this sentence that of course God has shown up in the ways I knew I needed, and even the ways I had no idea I did.

He has given me the energy to go visit my friend between chemo treatments, the simple presence of each other’s company being enough to reassure me of God’s presence in this story. And a smile that even in his weakened state he cut the grass and welcomed me with my own parking spot. Daily graces.

My friend with ALS does not have much of a circle, and she has spent many long days and nights sitting alone in her hospital room. God gave me the strength and the creativity to go spend some time with her and to decorate her room with color and love, as my own friends have done for me.

He has given me wisdom, discernment, and patience to assess the needs of my hurting littles, and provide the best support I can at the right times. He has given me the privilege of coming before the throne in prayer for all of these things.

And all of a sudden, with praise music playing in the background, and friends who are willing to show up both in person and in prayer, the anxieties of my heart melt into deep gratitude for all the ways I am held and carried, and the ways I can hold and carry my own people.

As I cracked the book of my quiet morning devotion today, the words specifically chosen for this date wash over me like the healing balm that they are: “Come to me, all of you who are tired and have heavy loads, and I will give you rest.” Matthew 11:28.

Another daily grace, God whispering my name, saying “I see you. Let me carry your heavy loads.”

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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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Incurable Hope

Hannah

It has been a long six years trying to find a diagnosis. Based on my symptoms and the way they have progressively worsened, we’ve known it was some kind of degenerative neuromuscular disease, but we haven’t quite known the prognosis. Early on it was thought to be MS, and I was able to work through it, making some modifications to how I did things, but vastly able to continue life as normal. Things continued to decline though, and I found myself losing the strength and endurance I needed to continue working as a paramedic. This is when I cut back to part time paramedic, and also took an office job in organ donation. As fulfilling as that was, I eventually found myself no longer able to make the drive, or even remain upright for the hours that it required. Eventually I had to face that I could no longer safely work in any job, and I needed to save what little energy I had for my family and friends.

It’s been a frightening journey at times, especially with the unknowns, but we are beginning to have some clarity. A recent brain MRI showed significant damage to my brain stem, and basal ganglia, which are responsible for many of the automatic functions of the body. This information shed light on why I was having symptoms related to that area of the brain, like trouble regulating my breathing. All of these pieces started to fit together and pointed to Multiple System Atrophy. In some ways this was a relief, as the contenders like ALS have a very short length of survivability. MSA comes with its own fatal prognosis though, typically within 5-15 years. Being at year six, I already feel blessed for the time I’ve had and continue to enjoy. I’ve tried to stay in the moment and be continually grateful, although I’ll admit that sometimes my attitude stinks and I fall into a grumpy state of forgetting the gifts I’ve been given.

I know that God knows my heart and hears my prayers, and those of so many who love me. I know that He can take this suffering from me if He chooses to. But even if He doesn’t, I will still choose hope and thank Him for every moment He allows me to have earthside.

I hope you’ll help me, dear readers, to continue to find Hope and Grace in the day to day. I know that it’s there, and sometimes I just need help to lift my eyes up for it. Please don’t treat me differently; let’s laugh and dance and do big and small things without fear of the future. I’m ready for today, how about you?

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

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Home, the Place Where I Belong…

Hannah

My tribe and I are elated to be spending some time in our old stomping grounds, Colorado Springs. Mark had to travel out here for work, so we made him drag us along! There is so much good to be found in the bright sunny skies and horizon full of majestic, towering peaks. This is our place.

We have seen so many friends this visit. So many. There are still more we couldn’t even squeeze into our days, but we have dearly enjoyed each heart we’ve been able to reconnect with during our time out here. Old friends are the bestest friends.

My little people have enjoyed days full of swimming, playing with friends, visiting their favorite spots, and then snuggling in for crafts, movies, and massage trains. It has been a wonderful break for our hearts and minds, and we have found joy in our minutes.

Our visit is too short to fit in all the goodness we left behind here, but our love tanks are full as we wrap up a wonderful week packed with sweet memories. Thankful for the Giver of such gifts.

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

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Waves of Today

Hannah

Lying in bed with big medicine, praying the deep throbbing would settle down, but still reveling in the amazing of today. It was such a good day. I was met by the prayers of my people, and it was wonderful to feel wonderful for awhile. We basked in the sun and rolled in the sand and splashed for endless hours in the big salty ocean. My body felt at peace and so relieved in the cool, clear waves. Visions of sand castles and beautiful shells and tiny fish and a giant stingray dance when I close my eyes, and I’m so grateful for the lasting grace of this day.

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

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Leaning In

Hannah

This past week we wrestled as we processed some new information. The brokenness can seem so overwhelming at times when we forget to give over control. We had a hard conversation with our little people, and we leaned in hard over the weekend to find the good in our story.

Saturday we supervised as our new high school freshman invited over several friends to celebrate saying goodbye to middle school. It was a mess of s’mores, slip n slides, rain, and lots of smiles and laughs.

Sunday was the first time I’ve made it physically to church in months. It was wonderful to sit among community, and to get to visit with a few of the kind women that have been reaching out to help meet our needs at home.

Monday morning we loaded up to watch a small parade in one of our neighboring towns, and then visited the dairy farm nearby to feed the animals and enjoy the most delicious freshly made ice cream.

Every time I push past the exhaustion and hurting to get to see joy and connection on my babies’ faces, it eases the discomfort in my bones and brings me the richest joy I can imagine. I’m so thankful I can still get up and embrace the best of our days. If you’re sitting on the sidelines, would you get up too? I promise it’s worth it. We’ve been given so much beauty to enjoy, let’s not miss it!

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

family

For the Love of Palliative Care

Hannah

For the better part of a year or more my weeks have had to revolve around appointments. With 14 separate specialists each handling a different aspect of my health, you can imagine how the calendar filled up.  Most of these doctors have done me well, and helped me cope with the different challenges of  having a degenerative neuromuscular disease, but the past several months have left me exhausted each time I’ve had to leave my home, and resenting the several times a week that I had to spend my daily energy on seeing a doctor.  Helpful, yes, but the truth is there is no cure, and they’re all just doing their best to help me be more comfortable and handle the unpleasant side effects of my condition.

My husband and I had a very honest conversation about all this, and agreed it was time to get hospice involved.  Instead of running all the time from doctor to doctor, I wanted to spend more time at home with my loves spending what energy I do have on them.  I needed all the doctors consolidated into one master plan. It was the /best/ decision. 

The palliative care people? They’re a different breed.  I remembered this from my days working on the ambulance, but it was reaffirmed to me the first time I met my new team.  They aren’t out to find me a cure; their goal is to keep me as comfortable as I can be with what I’ve got, and that is exactly what I needed.  I was met with such kindness.  They weren’t rushed and bothered like so many; they took the time to see and understand me. They acknowledged and affirmed everything I was going through and feeling, and they committed to only do what I needed most.

Our days have slowed down.  I have found myself with more energy because there is less running around.  I’m so deeply grateful to shift our goals and focus on loving each other even more. My doctor is so kind, and readily available when I need something.  When I landed in the hospital with septic pneumonia recently, my palliative care team was there, and they were the ones who stayed extra in my room and laid comforting hands on me while we spoke, asked me how I was feeling, and truly sympathized with the pain I was experiencing and wanted to help.  I am learning a whole new level of compassion from these people, and I can’t help but wonder if I show the same love when someone needs me.  I sure aim to, and I’m thankful to have such incredible examples showing me the way.

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

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Hard Fight

Hannah

I am here.

Head down, fighting hard over a perilous week, but still crawling to stand to chant the victory cheer.

It’s going to take some time for me to recover, but I will get there. In my quiet spaces, know I am deeply grateful for every kind word, thoughtful gift, and whispered prayer. You are my people.

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