As my baby sis and I chatted back and forth today on what would have been my nephew Angel’s 11th earthly birthday, my sister said something so incredibly true and equivocally profound that I am left pondering over it hours later.
“You know what’s amazing?” she said. “Angel refused to believe he was a burden (and he wasn’t). But by society’s standards, he was. He couldn’t move a single muscle other than his eyes. He was 100% dependent on others for literally everything–life, health, engagement, communication…all of it. Yet he never apologized for taking up space. He had high expectations for how he was to be treated and honored and considered and included and he didn’t tolerate those who saw him as worth less than anyone else. He KNEW his worth. He knew it so deeply. And I can’t say that for myself. I at times feel overwhelmingly guilty just for existing and have since childhood. But not Angel. He. Knew. His. Worth. No matter what. And that is really, really powerful.”
This struck me to my core, because I at times get caught up in how much of a burden I must be, and how I wish I didn’t have to depend so much on other people. But Angel never felt sorry for himself like that. He knew he was a treasure; a child of royalty, and he did not accept being treated as anything less.
While a lot of that came from being just the incredible little boy that he was, there is also loads to be said about the fierce way my sister and brother-in-law fought for Angel’s worth. He knew he was valued because he was constantly treated as valuable, and he was shown that what he brought to the table mattered. He was fought for, given a voice, listened to, applauded, and all of those things only cemented his knowledge that he was worth it.
As Angel’s 11th birthday winds to a close my heart is so tender, but so grateful that for a boy who could have felt less-than, he always knew right where he belonged, and now in Heaven, he has claimed his true worth, his royalty; the crown he fought so hard for and was bestowed by his King. And I can’t imagine a bigger smile than on the boy who always knew- I am worthy.
Most of you that see me see a small snapshot of me as a whole – usually on the best days- when I’m able to get out to church or to my kiddos’ performances. Because I’ve always been a kind of a private person, and I also fear being a burden to others, there are very few that have seen me at my most vulnerable as this awful disease has ravaged my body.
Maybe because the hard days are starting to outnumber the easier, or maybe because I am desperate for others to understand the depth of my need for help and prayers, or maybe because it’s so extremely isolating to live in this place of putting my best face forward, I am going to give you a glimpse of what it looks like and feels like to wake up and do battle against a body that is trying to kill me.
***I gave my husband permission to take some pictures of some of the hard moments***
A morning snapshot:
5:40 am. My alarm goes off. This gives me time to swallow a few pills to try to ease some of the pain searing through my body before I have to get out of bed. Snooze button a few times while the meds start to work, and then it is time to wake my littlest to start his morning routine.
Fatigue starts early, filling my arms and legs with wet cement as I go about fixing him breakfast and snuggling in on the couch to read our devotion together and watch part of a show.
7:00 am. My little is getting ready for the bus and I have to excuse myself as I’m dry heaving- my body rejecting the fact that I put pills and a sip of water into a digestive tract that has little function left.
7:29am. Last kisses and hugs before my little man heads outside to catch the bus. Worry creases his forehead. “Are you sure Mom? I can stay home from school and take care of you. All I’m going to do is worry about you all day.” I force a smile and convince him I am fine, that I’m just going to rest today. Reluctantly he walks out to the bus, stopping at least four times to look back and blow kisses and throw I love you signs. My heart could melt.
7:32am. I limp for my hospital bed that is set up in our den where I can be closer to the family. This is where I spend the majority of my time.
When you see me out and about at church or one of my children’s games or concerts it is because I have saved every bit of my energy that day and probably the day before in order to attend that event. It takes everything out of me, and I usually make it home and collapse for the remainder of the day, every bit of me used up on the best things.
8:00am. Through the shower and ready for work, Mark comes in to check on me and gives me any medicine I need, makes sure I am on enough breathing support, and starts a tube feeding if I’m not too nauseous. Then he goes around the corner to where his desk sits conveniently close to where he can hear me if I need help.
If I have no appointments, this is where the bulk of my day is spent. Resting and saving every drop of energy to be present for my family when they are all home in the evening. I have had to choose between the things I enjoy and feel like I should be doing- like keeping house and meal planning and grocery shopping- and instead spend time napping, writing letters for the futures of my loves, reading and sketching in my Bible, writing some works I hope to see published some day. This conserving of my limited strength allows me to be awake and upright to ask about the stories of my childrens’ days, and share a meal around the table, or attend their concerts or sporting events.
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Tucked in the binder that holds all my important medical papers, behind the copy of my DNR is a sheet that documents most of the complications that I am affected by as a result of my disease. It is a spiderweb of symptoms, doctors, and treatments that all fall under the same central header; Multiple System Atrophy. Some of these ailments are very visible, like having to use a wheelchair, or needing support for my lungs to breathe, but many of them are tucked beneath the privacy of my roof; wrestled with far from the view of my family and friends.
Pain and spasticity are big ones near the top. They are managed by a team of two of my kindest doctors who do their best to relieve my discomfort and keep me moving. It is a never-ending battle, trying to calm the muscle spasms and ease the pain that they create. One of the big guns I have for this battle is an implanted medication pump that sits in my lower abdomen and delivers antispastic medication directly into the fluid of my spinal canal.
Some of the worst spasms I experience are from my esophagus. These come on as crushing chest pain, making it nearly impossible to talk or swallow. The only relief is small tablets that dissolve under my tongue, and then I wait for the spasm to cease.
Gastroparesis is a fancy word that means the contractions of my digestive muscles are too weak to adequately push food through in the way it should go. This has resulted in a lot of weight loss and malnutrition, and frequent nausea and vomiting.
I have two feeding tubes currently. One that goes to my stomach that I can “vent” when I’m feeling sick, and one that goes directly into my lower intestinal tract where my feedings have the best chance of being absorbed. This means often not having an appetite, or if I do eat it sometimes comes right back up.
Another consequence of my digestive malabsorption is that the nutrient deficiencies cause anemia. This has resulted in the need for blood transfusions and iron infusions.
Not being able to eat enough to maintain my nutrition also means being chronically dehydrated, so I have a port implanted in my chest for receiving fluids throughout the week. This has to be accessed once a week by a sterile process of introducing a special needle that stays in the port for the week before changing it again. Fortunately this was one of the easier things I had to learn, and my previous medical career was a big help.
Impaired balance, weakness, and muscle wasting is a result of my nerves not communicating with their assigned muscles. Weakness and balance issues causes a lot of falls, and some embarrassing situations like squatting down in the grocery store and then not having the strength to stand back up. Some of these things I’ve learned to compensate for, and some of them just mean adapting to a new normal which involves a lot more frustration than used to be.
POTS is another result of having MSA. It stands for Postural Orthostatic Tachycardia Syndrome, and it means that when I go from lying or sitting to standing, my heart gets significantly less blood return than it needs, which causes extreme lightheadedness and fainting. My heart speeds up to try to compensate, but without the blood return it turns to a losing situation. I’ve gotten to where I can usually tell when I’m going to faint (so can Mark), and sometimes I’m able to sit safely before falling, but other times it results in goose eggs, an assortment of cuts and bruises, and an occasional broken bone.
Since this illness first took hold I have had to go under for 10 different surgeries. Feeding tubes, medication pump, port implants, repairing damaged joints, and some involving my brain. My body is a roadmap of scars, boasting of the battles I’ve won.
When I had a series of seizures after my second brain surgery I sustained damage to the part of my brain that allows for short term memory. When my memory was tested following this event, it was described as severe and profound memory loss. Daily it’s a frustrating struggle as I repeat myself and ask the same questions over and over.
The disruptions in my ability to think and concentrate makes it difficult to control my emotions, leading to bouts of depression and anxiety.
Neurogenic bowel and bladder means I can’t just hop up and use the restroom; I’m confined to making sure I have urinary catheters with me at all times in case I need to empty my bladder.
Fatigue. There are probably a hundred different reasons why I feel utterly drained most of the time. Pain is tiring. Sleep apnea is not restful. Using so much energy to breathe and fight spasticity every minute of the day is simply exhausting. The combination of all of these things leaves me feeling like I could crawl into bed and hibernate for months.
The most disruptive and serious of the symptoms of MSA for me is chronic respiratory failure. This started with me having low oxygen saturation and needing extra oxygen through a nasal cannula, and wearing CPAP and eventually BIPAP at night.
It has progressed as my breathing muscles have gotten weaker and weaker, and now I have to use a ventilator with a mask throughout the night and most of the day. My doctors have had to continue turning up the pressure of how hard my vent has to blow, which is not only uncomfortable, but it makes it difficult to hear and speak. At this point even with the higher support I’m still struggling to get a good breath, and the side effects of using my vent are becoming more bothersome. My doctors are working on the next steps I need to be able to breathe better and conserve my energy.
As the muscles in my legs have grown tighter and weaker it has gotten harder and harder to walk any distance. That coupled with the extreme shortness of breath that even a short walking distance involves have left me no choice but to use my wheelchair for getting around. As much as I would prefer to walk hand in hand with my people, I am nothing short of grateful that insurance worked so kindly with us to provide a chair that gets me around and provides comfort for my tender places.
These are the hills and valleys I battle on the daily. Some days it is easier for me than others, but on all of the days I have found myself constantly held and loved and comforted by my Heavenly Father, even in the pain and uncertainty. He has given me the privilege of being able to give him all the glory, and he sustains me and provides for me whether anyone else shows up or not. He is a good, good Father.
”For to us a child is born, to us a son is given; and the government shall be upon his shoulders, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of his government and of peace there will be no end, on the throne of David and over his kingdom, to establish it and to uphold it with justice and with righteousness from this time forth and forevermore. The zeal of the Lord of hosts will do this.“ Isaiah 9:6-7 ESV
A few days ago I was attempting to change the sheets on my bed. My dear hubs likes to use these heavy weighted gel pillows to sleep on that feel best on his neck. He was helping me put the bed back together and I reached for one of his pillows on the floor to hand it to him. Grabbing it with both hands I yanked it up almost to waist height only to have the weight of it slip from my hands and plummet back to the floor. Again I reached for it, and again it slumped to the floor as it slid from my weak grasp. And then I lost my ever-loving mind. “This is ridiculous!” I shrieked, and before I could even think I burst into tears. I know his kind words were trying to console me, but I could not hear them over the shame and frustration and despair that rang through every cell in my body.
I made a beeline to retreat to the bathroom where I hid behind the closed door and let loose hot tears of anger and deep sadness. All I could think was, “They used to call me Mighty Mouse because I was the strongest in my fire department, and now I can’t even pick up a stupid pillow. This isn’t fair, God. This was not supposed to be my story. Why can’t I have my life back?”
Silence screamed back at me as I finished having my temper tantrum and blotted my swollen eyes. Then there was a quiet whisper to my soul, “There are countless others who have that story; yours is one that will show my glory even more so because of your weakness. Just trust me.”
Peace seeps in like the gentle rocking of a newborn to sleep. My Abba Father has got me. He knows the pain, He knows the frustration and disappointment, and He promises to make something beautiful of my broken pieces.
As I crawled into bed I did the only thing I know to do when given the choice to despair or choose hope; lift my hands and praise Him for the many gifts in my life. I list them off into the stillness of night, and like a mighty shield, that act of thanksgiving pushes back my shame, my frustration, and my despair, until all that’s left is a calm assurance that I am exactly where I am supposed to be.
In what ways are you feeling your shortcomings? Are you able to leave those at the feet of Jesus and trust that He’s got you? It’s not always easy, but it always comes with a huge helping of peace.
“Swish!” The sharp, boxy machine sucks in a gulp of air and sends it erupting into a strong stream of gurgling water bubbles before sending it whisking up the plasticky tubing and into my nostrils. Brief spikes of pain take turns blazing up each of my legs, the depth of them an ache that feels like my bones are shattering.
I roll to my other side and tuck the heating pad back around my hips and thighs, trying to find some relief, and the effort of moving sucks the air from my lungs and leaves me gasping for each next breath like I’ve just run a marathon. Irritated, I reach for the pressurized mask of my ventilator and slip it over my nose and mouth. The rhythmic breaths it provides offers relief.
Sometimes hope is difficult to find in the lonely hours around 3am. The silent dark seems just the right habitat for all the doubts and big questions to seep into my soul and look for places to take root. I cry out to a God who at that moment feels very far away. “Can’t we just skip to the good stuff talked about in Revelation 21? God living with us. Death no more. Pain, grief, and crying a thing of the past?”
As I’m lamenting over my pain and isolation and how tired I am from these pain-filled nights, my thoughts are suddenly turned to the many stories I’ve heard and read of saints before me who suffered immeasurable losses and bore unthinkable burdens and didn’t whine or complain, but counted it all joy. I picture all of the men and women who have chosen to remain in hostile places to share the good news of Jesus, and suddenly my own resilience seems very soft.
I cry out for a bigger capacity to suffer well, with only joy, to make me tough, yet keep me tender, and to loosen my grip on my meaningless earthly treasures. God is gracious in His gentleness with me. He doesn’t mind being with me in my weakness, and He has written a good story for my life that He will see to completion.
So tonight in the lonely stretches of battling big pain, He gathers me into His arms and carries me through a room crowded with sorrows so that I can take up this cross again and deny myself, following Him down a road I never would have chosen for myself, but that leads to fulfilling and eternal life.
In a season of suffering and deep grief, a day set aside to give thanks can feel counterintuitive. This week as I have pressed into a list of tasks to prepare for a day of fellowship and feasting with my family I have faced endless hours of debilitating pain, a frightening drop in function on a repeat breathing test, a company that has decided not to provide my tube feedings anymore, and fatigue that binds me with so much exhaustion that a whole day slips by without me waking. Admittedly, it can be easier to find things to complain about than to be grateful for, but then in my morning quiet time I am reminded that thanksgiving is the way we enter into and experience His presence (see Psalm 100:4). To say “Thank You, God” is to perceive Him with us in our suffering.
In the dark, painful corners of a Nazi concentration camp, Corrie ten Boom wrote, “Thankfulness keeps us connected to the reality of God in our lives.” If a woman persecuted and tortured for doing nothing more than showing love and hospitality can find reasons to give thanks during the darkest days of her life, than I have no excuse not to be counting my blessings. So, I pull out my journal of daily graces and scrawl them down on the pages; the easy-to-miss but very present reasons throughout my days to give thanks to a God who is acquainted with my sorrow, and is fiercely present in my suffering.
Gratitude is not always easy to embrace. Suffering affords us endless opportunities to complain and despair and harden our hearts. For myself, some days are so acutely painful that I wonder how is there possibly anything good to be thankful for today? Yet I continually find that just that amount of belief is enough to gently turn my heart and head toward my Savior.
To those of you that are trudging through deep grief and fighting daily battles that threaten to consume you, I see you. I hear your desperation and I feel your pain. Still, I urge you to lift your head and look around. Find the daily graces, no matter how small. Your warm cup of coffee. The sunshine streaming through your window. No matter how small your capacity gratitude in that moment, you will find yourself inspired to thank Him for more and more of His gifts and His goodness.
You often get to see the good and miraculous in my life, and I love sharing those parts with you, but right now I am fighting from a pit so dark it seems to swallow my ability to find the streams of light I have grown accustomed to piercing the darkness. My heart and mind are tired. My body is exhausted. I have dared to hope that I am still here because God is going to bring about a miraculous healing in my life, but as time edges on and I feel the weight of not being even a shadow of who my people need me to be, I find myself dreadfully weary of this life hanging in the middle between the miracle of being restored to health and the seeming relief of death.
Red tape curls angrily around the care that I need; new rules preventing what I was able to get before, but the alternative of leaving the security of what care I do have is intimidating and perhaps foolish. I am tired of having to fight for myself; to advocate for things bigger than myself when I hardly have the strength to take a shower.
Come and save me Lord God, because you bless and protect your people, and I am yours. Give me a glimpse of the glory behind this wall of darkness to refresh my hope in you. You are my God and my protector, please answer my prayer and refresh my hope in you. Let my life be a living testament to your sustaining grace; whether by giving me the endurance to withstand whatever suffering will align my life with your heart, or by extending the grace of calling me Home.
I do not know how to gracefully live out what you have called me to, but I know you have been good all my life, and I trust that if hanging in the balance is what you have for me, you will help me find the strength to endure the calling you have set before me. So help me Jesus, I need your love to restore my peace.
Providence. A young wife stripped of her physical capacity, struggling to do basic things for herself as life moments pass by, leaving her behind.
Providence. A child living his entire young life consumed with the fear his mom is going to be taken from him. Calling her from school 4-5 days a week to make sure she is ok.
Providence. Two young girls swirling and giggling as they try on their mama’s wedding dress while she watches on, swallowing hard as she wonders if she will get to see them married.
Providence. A young boy looked over as having less worth because he is different, broken. Trying to scream his presence and purpose and his charisma for life from a body that won’t let him speak, or stand, or dance.
Providence. A thin sheet of water turns to glass as the tires screech across it, slamming the car into a semi, snatching away the life of a roommate, known, cared for, and needed.
Providence is a word I’d heard but not understood very much about until a recent sermon I heard from my pastor. I learned that Providence means God is in complete control of all things; there is no chance or fate.
This week I have rolled the word over and over in my mind, trying out its relevance, wondering if I have the guts to cling hard to the truth my mind knows even when my heart feels shredded.
What I am learning to believe about providence is that it is responsible for making an important story out of the hard path I am called to walk. When I view life through this lens it lends the hope I need to keep clinging even in these darkest valleys, though not easily.
Providence and I have come head to head this week. I have challenged why God’s complete control feels so out of control at times. I have pondered why if he is able to do immeasurably more than we can ask or imagine… why don’t we always get the answers we long for? It seems that sometimes when pursuing God, he cannot be located. What then?
I discovered reading the story of Esther this week that even in such turmoil God’s name was never mentioned, yet His fingerprints were all over that story! I knew God was trying to help me better make sense of the process and better accept particularly the things that we do not prefer or do not understand taking place in our lives. These things, hard as they may be are all part of God’s plan to develop us and take us from where we are to where he wants us to be. We may not see him, but that doesn’t mean he is not behind the scenes arranging every detail for His purpose.
Even the excruciating details. Even the ones that bring you to your knees, and the ones you don’t know how you’ll ever recover from. Every single detail with His loving heart imploring me to never give up hope that the hard parts I walk through are the beginning of something important and even beautiful that he is orchestrating.
Here I am, arms wide open, bleeding heart held out to You. Trusting you will take and use it for Your Kingdom, because I know You never waste our pain, and Your plans are so much greater than my own.
As this year’s backyard vegetable gardens have started bursting with tomatoes and herbs and every size and color of squash the past few weeks I have found a gut punch creep in when seeing the ripe harvests sprawled across social media. Gardening makes my heart sing. The fresh air in my lungs and the weight of the musky earth beneath my fingers just does something so good for my soul. Only this year it didn’t.
This year as the frosty months neared their end and it was time to drop seeds into plastic cups of soil I was neck deep in my blankets desperate for endurance and relief from debilitating pain. As I considered the planning, planting, tending, weeding, and picking that would go into my garden again this year I had to swallow the hard pill that my body was not going to have strength to do it this time. The planting weeks came and went, and I was still in bed fighting for more.
Every time I glanced out my window and saw the barren garden beds sitting empty of their Springtime sprouts it hurt my heart. I decided it made me too sad to stare out at boxes full of empty dirt all summer, so I had my wingman take me to the store and I chose packets of flower seeds in beautiful colors and patterns. I summoned the energy to rake through my garden beds and pluck the stray weeds from the tilled soil. The packets were torn open and sprinkled across the soft soil and covered in compost. Finally I gave the ground a thorough soaking with the hose, and collapsed back into my bed anticipating what would grow.
It didn’t take long for small green stems and leaves to start pushing their way into the daylight. I was thankful something was growing, but as I scrutinized the growing plants I could not tell the difference between something I had planted and just another weed, and I started to doubt if anything worthwhile would be coming from my garden this year. That was about the time I saw the first post of a friend showing all of the produce she had pulled from her garden, and I felt sad and resentful and just really missed working the earth every day.
I finally had the strength one day to go out and have a look around. Picking my way around the lumpy landscape to get to my garden beds, I could suddenly see past the tall tangles of green that had taken them over. Dotted among the foliage were colors; orange, pink, yellow, purple. As I took it all in I felt the Holy Spirit whisper to my tired heart, “this beauty is for you.” A hug that gathered all my disappointment and not feeling good enough and wrapped it up in grace that extended beyond what I could have imagined.
Those simple flowers in their elegant gowns were the reminder I needed that this life will not always be what I want it to be. There will be places I fall short and mountains I cannot climb, but in place of those if I look in the right direction there is so much beauty to be found. Beauty that says I am still worth it and I am deeply loved. I may not be bringing in baskets full of cucumbers and zucchini to prepare for my family this year, but every time I look out my window at the messy tangle of green that has taken over my garden I see those beautiful colors standing tall in all their glory and I know that I am seen and known and loved. So are you, my friend. In your deepest disappointments things may not look like you wanted them to, but look around and you will find that there is still beauty to behold.
PS- for those of you wondering what on earth FOMO means… fear of missing out 😊
Choosing Hope 