Wordless Wednesday
Tag: Multiple System Atrophy
Heavy
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.”
Buckets
As I’ve considered the things I’d really like to do before my illness progresses enough to eliminate possibilities, I’ve kept kind of a bucket list of sorts in my mind of things I hope to get to do. At the top of the list was going to the beach with my family again. As time has slipped away though that has seemed out of reach, so when I discovered we essentially have a beach and sand dunes just a few hours from us by Lake Michigan, I jumped all over making it happen.
For months I saved up the earnings from my Etsy store so I could pay for us to rent a campsite and a comfortable RV that could power all the medical equipment that has to trail along behind me. I managed to snatch one of the last groups of days left for the popular camp spots at Indiana Dunes State Park, and started harping on my family to black out the days and make sure their bosses knew they wouldn’t be working. When one of my kids got pushback from their boss about taking the days off I even composed a carefully written letter about how important this was to our family, and praise Jesus he consented to approving the vacation days.
We planned for months… meal planning, gathering up our boogie boards, kites, and buckets for the beach, and rounding up sleds we could use to fly down the nearby sand dunes. Lists of medicine and machines I needed to have with me. I found an amazing RV nearby for us to rent, and got everything settled. I was so excited and looking forward to this time for all of us to escape our busyness and make memories together.
I don’t know if it’s sad humor or irony or what, but a few days before our trip I landed in the hospital as the result of a mistake made by the healthcare professionals. It was serious, and my hopes for a quick prescription and release were dashed as I was admitted and prepped for surgery the same night. Buckets of tears later I had begged and pleaded with each doctor, explaining the significance of the trip, urging them to let me go. It was not to be.
Father’s Day morning (and also my son’s birthday) was the day we were set to leave. The rest of my clan packed up the RV and came to the hospital to have a makeshift celebration with me before they hit the road for our vacation. There were to be no refunds for what we had paid, and by then there were no other days available to rent camp spots, so it made the most sense for them to go ahead without me.
The disappointment mixed with excitement in my hospital room that morning was palpable, and I felt genuinely joyful they were still getting to go, while at the same time deeply disappointed I would have to stay behind. There was a flurry of hugs and kisses as I sent them on their way, demanding many photos.
In the stillness of a familiar hospital room my frustration burned hot rivers down my cheeks. All the things I have lost to this disease, Lord, why did this trip have to be one of them too? The whole point was for it to possibly be one of my “lasts.”
In the painful silence of a room that overlooked a brick wall, I remembered the story of Nehemiah. A man who had worked so hard for something, and then had seen it come crumbling down. He says he sat down on the ground and cried. He mourned for several days and refused to eat. Then he got up and dusted himself off. He thanked God for keeping His promises, and he prayed for restoration. This is the heart posture I desire to have.
Charles Stanley said, “Taking time to lament what we have lost can be an act of worship. Nehemiah allowed his distress to lead him into deeper communion with God. Offer your tears as devotion to Him.”
I pray that through the many disappointments and missing outs of this disease that I will learn more and more to press into Jesus through my frustration and discouragement. I know He sees far beyond what I am able to, and I trust that He knows how to write more good into my story.
The Gift of Suffering
Last night in my Growth Group we came across a verse in 2nd Timothy 4 that gave a charge to “endure suffering.” It was such a simple statement, tucked in among a small list of things we are called to do as believers in Jesus. I found irony in how matter-of-fact the command was.
Suffering has barged in on our most important dreams and deepest desires. We try to avoid it at all costs- dodging this way and that to ensure our happiness, comfort, and contentment. Enduring suffering is probably not at the top of our to-do list every morning. What if Christians believed what we preach though; that God is enough?
Psalm 146:5 says, “But joyful are those who have the God of Israel as their helper, whose hope is in the Lord their God.” He is enough to bring us joy, to make us happy, regardless of our circumstances, but we need to lean into Him.
Leaning into Him is something I have to practice hard at daily. I am sloppy in my suffering. However, I realize the gift that it is to me, because suffering easily strips away the things that become substitutes for my happiness, and it opens me up to the indestructible happiness found in God. When my hope is in Him I find I can more freely enjoy the good things He gives me, because I am not dependent on those things to make me happy.
When our lives are spinning along without the interruption of pain or sadness it’s easy not to feel a need to seek God’s help; He often doesn’t hear from us until we are weary and crying out for mercy. When suffering comes along we realize He is our only hope, which sends us running to Him. This is why I can be grateful for the suffering He has called me to; it keeps me dependent on Him.
What about you? When the burdens you carry have made you weary and sad, are you able to find happiness and contentment by letting God fill up your empty places? It can be hard, but it’s also liberating. Let’s do it together today. Wherever you are in your suffering, lean into Him. Give Him the chance to show you that He is enough.
If Pain Could Kill
Daily I live with a certain amount of lasting, chronic pain. My doctors have worked long and hard to try to manage it enough that I can function as much as possible. This week has brought difficult new challenges though. Regardless of what I do in a day, sometime around 4 or 5pm I’ve started having the most unbearable pain. My medications don’t touch it, neither do the handful of topical rubs I apply, or the essential oils I take by the capsule full. Obviously sleep evades me during this time, as I can do little to get comfortable with my muscles and bones screaming at me that something is very wrong.
There are a lot of effects of this disease that I can push through. I can go from puking to putting on a smile and showing up at church on a Sunday morning. I can be super short of breath and hook up to my vent and still make it to my babies’ concerts and ball games. I can go from fainting to re-orienting myself and carrying on with the responsibilities of my day. But this pain. Sometimes I don’t know how to push through.
After working in healthcare for so many years I’ve always tried to be really realistic when asked to rate my pain. I have the best chart ever, and often I refer to it to make sure the number I’m blurting out is on par with how I’m really feeling.
Most of time I’m sitting around a 6 or a 7. Nighttime lately is an 8-9. I find myself anxiety-ridden and begging for mercy. There are times I feel like I can push through anything but this pain, and I think to myself that if pain alone could kill, I would surely die.
I beg God that if He can take one thing away it would be my pain, because I feel like it’s the thing that makes my world stop turning. It’s the thing that prevents me from meeting my people.
Then I remember that pain is the thing that most brings me to my Father’s arms. It is what ushers me into the sacred places of other’s suffering, allowing me to be a channel of Christ’s compassion, comfort, and love. This season has been long and intense and piercing— but all of these tears and pain and desperate prayers have been not only for my own good, but for the good of other individuals entrenched in suffering. It is 2 Corinthians 1:3 in action:
“He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”
Even living in the cruel agony of a terminal illness God is continually showing me how He turns my pain into lasting and eternal gifts. And so I find a way to cling to the shreds of hope and the miracles He works on behalf of His suffering children, and I can trust that He will hold me together and work these wonders together for the good of my soul.
Making Lemonade
Ever the entrepreneur, my boy is an experienced lemonade slinger. His delicious recipe and adorable smile keep people stopping , and most days he turns an impressive profit for a 11 year old.
As he started gearing up for the first sales of the season he said, “hey mom, you know how I was going to save up my lemonade money and buy a motor bike? Is it possible for me to save up all my money and use it for a cure for your sickness? Utterly humbled by his compassion and thoughtfulness, I did my best to explain that there is no cure; it’s just doing things to try to make my body as comfortable as it can be.
Flash forward to today- he was setting up his lemonade stand, and he paused to come talk to me. “You know how you said there is no cure for your sickness? Is it ok if I use my lemonade money to pay for the next few medicines you need?
There are few things in life that prepare your heart to be absolutely melted and shattered and hugged and twisted all at once like that. I’m so thankful for the empathy and gentleness that my boy is learning, even in the midst of such heartache.
What Not To Say: Part 1
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?
Wordless Week
Fury
Tonight I’m angry. I was looking back at pictures of my amazing birthday party in August, and suddenly seeing myself in a flowery sundress, my long, slender neck kissing the curves of my collarbones without any tubing jammed in it was too much. I’m angry that I have to live with a hole in my neck to have more time. I’m angry that I can’t ever snorkel again, or go anywhere without lugging a bunch of medical gear around with me. I’m angry that my family has to deal with the fear and the routine and the stares I’m going to get out in public.
When is enough enough? Are the prayers of my family and friends just vapors that disappear into the atmosphere? Have I not surrendered enough of myself to trust God and believe he will use my story for good? Why does it have to strip literally everything from me first? Can’t I hold onto a little of my dignity?
I remember Lamentations says “pour out your heart like water in the presence of the Lord.“ So I do. All of my agony and my questions and my fear I dump like buckets at His feet. I stomp in the puddle just for good measure. Then I wait. All is quiet. My shattered pieces spread like cracks in a deep, frozen lake. Nothing.
Then as I tidy up my area for bed a notecard slips from the pages of my Bible. The curvy handwriting is not mine, and I have to strain to read it.
“Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, ‘the Lord is my portion; therefore I will wait for Him.’”
I flip to the page in my Bible and it continues; “The Lord is good to those whose hope is in Him… it is good to wait quietly for the salvation of the Lord.”
Wait. Quietly. At the bottom of the card is scrawled, “in the waiting it can be hard to trust His faithfulness.” Yes Father, it can be. Thank you for showing me that you know that. Thank you that you see me, and my struggle is not unknown to you.
With a serene peace replacing my recent fury I have a new thought to chew over. Waiting. Waiting expectantly. Knowing that my rescue is coming, and all I have to do is quiet myself and be ready for it.
He has never failed me yet.
The Last Good Breath
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!
Choosing Hope 