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?
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.
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!
A little over two weeks ago I said at two different times; “I really miss sunrises and sunsets.” I mean, we have them, but they are pale and washed out, not the brilliant fluorescent colors of my hometown sky that I loved. “it’s just not the same,” I said, “and I miss it.”
The next morning I awoke in the ICU after some some serious respiratory struggles the day before. The first thing I noticed when I opened my eyes was the hot pink morning sunrise streaked across the sky.
God cares about the big things, like saving my life that night. He also cares about the little things, like the colors that take our breath away. I think he delights in saying, “I heard you, and I got you.”
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.
………………………………………
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.
Looking around at the faces in my coming and going these days, it hits me that the majority did not know me before I was sick. The me that they know has always been the me that needs help, that is in and out of the hospital, and navigating much of life from bed or a wheelchair. That makes me sad. I miss my strength.
I wish all my people could know the strong me that could hike a steep mountain trail. The me that loved to do all the creative Pinterest things with and for my little people. The me that was social, driven, confident, and strong.
It has been a gradual and subtle loss. The landscape of life being destroyed slowly, one square inch at a time. Suffering lingers on and on, and pain wears me down like friction wears down metal. On the best days, little inconveniences, like having to drag a stool into the shower to sit remind me that I’m sick. On the worse days I don’t make it out of bed; strapped to a ventilator and dependent on someone else to wake me round the clock to swallow the pills that give me some semblance of comfort.
I have no idea what is going to happen over the next 3 months, or even the next 3 weeks. It looms over me, casting an ominous shadow over my entire world. No matter what I am doing it is always taking up a portion of my thoughts. Yet I push it away, determined to suck every grace drop and dribble of joy from my moments.
In the sleepless dark hours I wonder over the future of my husband and my little people. I pray the loss of me will not stifle them. I replay the losses we have already been through. I weigh the scars that have already been created, and I hope that these new ones will heal too. I compare the losses and try to estimate the outcome based on what we have been through. Anyone might agree this is a waste of my time.
Loss is loss, whatever the circumstances. All losses are bad, only bad in different ways. No two losses are ever the same. Each stands on its own and inflicts a unique kind of pain. We tend to quantify and compare suffering and loss. So, I shift my thinking and pray that meaning can be gained by this suffering, and that we can all grow through it.
I pray that the scars tell a story that changes lives for the better and points to the God of my salvation who has carried me through every hard step. I pray that louder than the story of devastation, people hear the story of grace woven through it; how each time I met the end of me I was met with the grace to fight a little more, to grasp hold of more moments, and to turn broken into beautiful.
I echo my friend who was dying of terminal cancer when I say, “I feel like a little girl whose daddy has come early to pick her up from a party. I’m not afraid to die, I just don’t want to go.” I want to be here for the mundane afternoons after school; racing through homework to get to indulge in the better parts of the day. I want to be here for the sending off of each of our birdies… sending them soaring in the directions of their dreams and always having a soft-landing place back home when they need it. I want to be here for the blush-faced budding relationships, and the promises and the ceremonies and the rings. I want to get to be Grandma Nanny, with long grey hair and crinkly smile lines, rocking my grand babes to sleep.
A slow stripping of my pride and my dignity leaves me vulnerable and weary. The people I meet now have to take me as I am, with the understanding I may not have much to give back. This changes the landscape of my relationships, because those saints willing to walk into my mess with little promise of gleaning anything for themselves out of it are few and far between.
Still, here I am— hands open, life open, ready to embrace any who are brave enough to walk this life with me. And the times when my invitation is met with the sound of crickets, I know I am held and I am kept in perfect peace in the arms of my Abba Father, who takes me as I am- all my pieces-and traverses this bumpy, winding road alongside me. I have never been alone, in my strength or in my fading.
“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.
Today a nurse and doctor from hospice came out to my house and assessed my condition and the things that have declined for me over the past few months and weeks. We talked in depth about my goals and my family’s needs, and the reality of the days ahead of me. They interjected hard conversations with compassion and kindness and humor, and in the end as they admitted me under home hospice care, I felt as though I had been given a great gift rather than something to grieve.
How perfectly that word describes the jumble of days that has been this week… “the period between daylight and darkness.”
Thank you for hanging in there with me this week. I realize now that I dropped off the planet in the middle of conversations, appointments, and even in the middle of uploading a photo to Facebook! I know many of my friends and family members were wondering what on earth was going on and why I wasn’t answering.
Rendition of a photo I posted this week without knowing it. No one knows what it is… to me it looks like twilight.
This weekend my respiratory drive decided to take a vacation, and my family found me unresponsive. For my medical peeps, I had a GCS of 3 when paramedics arrived. I spent the first part of the week intubated in the ICU.
In the haze between sedation and full consciousness I was so blessed to know that some of my dearest people were there with me praying over me, reading scripture over me, and just holding space for me on some very scary and unsteady ground. Unable to talk, all it took was me scratchily scrawling out a name or two on a piece of paper, and my people came running to be by my side. I am so incredibly thankful.
My medical team worked hard with me, but it was obvious my body was tired. Each time they turned off the ventilator to try to get me off of it, my chest remained silent, and they had to turn it back on. What changed this was overhearing my husband ask what the next step would be, and seeing my doctor motion to his neck that I would get a tracheostomy. I scraped up what fight I had left in me and scribbled out “try breathing again.”
For the next hour I breathed, but it was like trying to come up for air when the pool cover has already been put back on. I fought and fought, but eventually I heard the doctor order the medications be drawn up for rapid sequence intubation; they were getting ready to intubate me again. Somehow in that moment of defeat I sucked in a thin stream of air, and then another. Little by little I was able to take each next breath on my own until I was finally resting back against my pillow, only a bipap mask supporting me.
I made it very clear to my doctors that my daughter was graduating high school on Thursday, and I would be leaving the hospital by then with or without their blessing! Thankfully my team was very supportive and worked hard to get me out of there in time. That seemed an impossible feat at the beginning of the week, so my heart was overjoyed to be able to celebrate with my girl.
Sola Gratia!
I was there to listen to her beautiful singing voice peal across the arena in perfect harmony, and my heart sang. I was there to hear her name announced as she walked forward for her diploma, and my pride thumped swollen in my chest. I was there to giggle at the cute, triumphant face she made as she walked by the cameras with her prize in hand, and my spirit soared. The joy of the Lord is my strength, and he truly has shepherded me through some of the deepest valleys and the highest mountaintops this week.
I also delighted in the fact that my little sister and a few of her littles drove out for the graduation and I was able to spend time loving on them.
Seester LoveThankful for my girls helping me get fancied up! 💕
This will be the way forward for now, and we are grateful for the help to better manage things that have gotten frightening and difficult, like my weakness and breathing. I am grateful for this roll in seasons that brings these beautiful blue skies and warm breezes; ready to soak them all up with my people! And I am thankful for each of you who have faithfully walked us along this journey in so many ways. ♥️
Choosing Hope 