Tag: Multiple System Atrophy
I am fighting for good days. I dislike the desperation in that sentence, but it is the most accurate. The pain that used to be a whispering reminder is now a roaring force that seems to sneer at my attempts to quiet it. It mocks me as I try to plan time with my beloved friends, and it smirks when I have to scrub my calendar to prop myself among my pillows instead. I did not expect for pain to be the thing that makes me feel so desperate.
I wish I was kind and gentle even in my hurting, but sadly it makes me irritable with the ones I love, and makes me say things I know aren’t true to my character. There are medications to help, and some of them work quite well, but change my personality and bring out a mean streak in me. In my mind it will never be worth easing the throbbing at the expense of my family’s feelings.
The medication that works the best to take the edge off of my pain makes me staggeringly sleepy. I’m so thankful to have something that works, but I find myself having to choose between being comfortable and asleep, or being awake and in agony. Sometimes I choose one, some days I choose the other. Neither one of them feel fair.
I am trying to find a balance; staying present enough to love on my people, and allowing myself respite from the agony that threatens to break me. Will you pray for me? That my moments with my tribe will be multiplied, and I will have the strength to ride out the hardest parts with grace and patience for the better days that are coming.
Under The Cover
We’ve all heard not to judge a book by its cover…
We recently had family pictures taken, and they turned out beautifully. I’m so thankful for the extra time taken to capture moments of me with each one of my little loves, as well as the man of my dreams. As beautiful as they are, when I look at them I swallow a hard knot wondering what the future holds. As I’m fighting for another Christmas I’m overwhelmed with thanks with each moment of time I’m given; we’re all given.
As I poured over our photos and soaked in the soft background light and the beaming smiles, something struck me. It looks like such a warm Fall day; our faces lit with sunshine, and I look so strong standing beside my people.
Well let me take you behind the scenes. It was FREEZING. I mean nose-running, eyeball-gelling, goosebump-shivering cold. This kind of cold is especially hard on my muscles, escalating my normal spasms into arms and legs that lock up and refuse to move.
This is how that day really looked: I was in my electric wheelchair bundled in a coat and covered in a thick blanket. We would roll to each new backdrop and I would be helped to pull off my blanket, yank stiff arms out of my coat, take my oxygen tubing off my face, shuffle to where I needed to stand, and then prop me up for the next shot. Then back to the chair, coat on, oxygen on, blanket on, roll to the next place. It felt so messy and chaotic, yet you’d never know that looking at our pictures.
That’s what struck me. It was such an important reminder about how appearances are deceiving, especially on social media. We can all be really good at hiding what is really going on. Unfortunately that’s usually our default; pretend everything is ok. Remember that many people are fighting hard battles even though you might not see them, so offer grace, extend kindness, and never assume you know the whole story.
Leave me a comment; it lets me know you’re listening!
Trying his best to make each special event an amazing memory for us, my sweet husband booked us an Airbnb for a short getaway a couple of cities away for our 19th wedding anniversary in November. This man; he is the king of making good plans, and the expert at rearranging them when life gets in the way. On our 19th wedding anniversary I was in inpatient hospice because my pain was so severe, and I was under quarantine because of a covid exposure. Draw a big scratch through those plans. He came up with a back up plan and made it wonderful and memorable, and I enjoyed every minute of it, but we still had these Vrbo reservations to see about.
Hubby reached out to the owner and explained our situation and asked for an exception, and they allowed us to move the dates of our Vrbo stay when I was out of the hospital. THEN I was invited by a friend to fly out and spend time with her getting her new condo set up in her brand new town. Now friends, my hubs is fiercely protective of our time together, but he is also the master of flexibility, and understands each moment and each possibility is truly a treasure for me and for my people right now. He reached out again, got another exception to change our Vrbo dates, double-masked me, and put me on a plane to make memories with my friend. My friend and I had a wonderful time, and then the day finally came that it was time for Mark and I to run away together. Giddy like a schoolgirl!
My husband is a rockstar at finding cool places for us to stay, and this weekend did not disappoint. He found us an apartment complex built in the earlier 1900’s that had so much class and charm, and was the perfect place to tuck away and socially distance for the weekend. He cooked for me, hauled around my heavy wheelchair whenever we needed it, let me sleep in, and gave me a heart full of special and lasting moments to tuck away.
We pretty much had the run of the place, hardly seeing anybody when we ventured down to play ping pong or snuggle in the hot tub. There were gorgeous details to catch your eye all throughout the building, but our apartment was simple and cozy and just the perfect place to hide away.
Throughout dating and on into our marriage Mark and I created a fun tradition of getting super dressed up and going out on a date. For our very first “formal” date over 20 years ago, we got dressed to the nines and Mark took me to a baseball game, build-a-bear, and then dinner at Morton’s; the best steakhouse ever. This weekend we were tickled to find just a few blocks from our apartment was a Morton’s, so naturally we made that our choice for our dressy dinner out again 20 years later! It was dreamy!
The wait for this trip was worth it, and thanks to Mark we had a wonderful and very special 19th anniversary. We celebrate often and we celebrate big; fully embracing each of these treasured moments I’m given.
I’m so thankful to my man for working so hard to make sure we could do something fun but still accommodating for me. I’m thankful he still enjoys pursuing me, and lets me play dress up . I’m thankful most of all for the quiet, rejuvenating weekend we had together and the new memories made with the love of my life.
It gets said a lot; you are so brave. When it is said to me I think to myself, “I am not brave, I am barely hanging on.” I have always self-described bravery as purposely doing something big and scary. Like something voluntary I think. I have always felt like brave is more of a choice rather than something you just are.
Recently my pastor came and sat at my bedside. His enormous hand swallowed mine, and he looked me in the eyes and said, “you are so brave.” I responded by telling him I don’t /feel/ brave; I feel like my anger and my fear and my disappointment is the opposite of brave. It planted a seed in my mind though. I started wondering what brave actually means.
Back in my day, before Google, we had these things called dictionaries. They were huge books that had the definitions of practically every word you could think of. So, I dictionaried the word Brave. Yes, I am making a new word because in this day and age of everything being looked up by Siri I feel like the good old dictionary deserves its own new description that I can convince my kids is real. Dictionaried. That’s what I did. The Oxford Dictionary said this under the word brave:
“Ready to face and endure danger or pain.”
It did not say you come looking for the danger or pain, but are simply ready to face it; assuming it has instead come looking for you. It was such a simple definition, but it resonated in my bones. It did not say that bravery is a lack of fear. Wow. This changed my whole perspective. It is ok for us to show up shaking and sobbing and scared out of our ever-loving minds, but being brave simply means being ready for the fight.
My danger and pain today is facing Botox. It is injected into my hamstrings and some of the muscles in my legs to loosen the spasms and help me retain more range of motion. The last time we did this I passed right out on the very last injection. Naturally that bad experience has me feeling extra apprehensive this time around. I know however, that I am putting up the fight of my life. That is my brave; still being afraid of what is going to happen, but showing up anyway because I know good will come of it. Courage is not fearlessness.
Friends, whatever you are facing today, just getting up and facing it makes you brave. You do not have to have good feelings about it, you just need to show up with the ability to endure. The world knows you are afraid, but you love more than you fear, and that is what we all remember about you. Let’s take on today, shall we?
All things must come to an end. Except suffering maybe. The verdict is still out on that one. I do not know anymore why I am so candidly sharing my heart-thoughts with a world unknown to me. When I first starting blogging, when our daughter died, I found it therapeutic. Getting my thoughts out and also believing they might help someone else who was going through trials somehow eased a bit of my grief. Then my life carried on and this horrible disease struck, and I kept putting it all out there. The good, the bad, and a lot of the ugly. What I’ve come to realize is I don’t know what the purpose for that is anymore. I am blaring my deep hurts, vicious disappointments, and strongest hopes to an audience who can neither see nor hear me, and the void of comforting souls doing life beside me remains vacant.
Perhaps one day my children will read my words and gain an understanding of the storyline that played in my head, hidden beneath the brave face I tried to put on for them, and they will learn the truth-depth that is woven in the coming and going of our every day.
Thank you each for being here to follow along and cheer me forward. For now it is time for me to step away, to let my silence be the echo of the words I have clung to for so long; Choose Hope.
Just Keep Being
I was scrolling through my photos and feeling pretty grateful. It was a day of strength. A shunt adjustment this week seems to have given me some reprieve.
I got to witness the joy of my little guy filling up a backyard pool.
I got to melt into a puddle of all the warm amazing feelings watching my boys head off together with their fishing poles.
I was able to stand long enough to make trendy sweet coffee drinks with my girl.
It has been good. /Good/
But then I swiped to the next picture and it hit me like an unsuspecting slap that stung like fire.
It was there because I had been going through some old photos a few days ago and I’d saved it to send to a friend. I had been building this incredible list of small mountains I’d climbed, and reveling in the joy and fulfillment I felt, and this memory of my past swiped my feet out from under me and sent me crashing through a wall of heartache that I was not ready for.
So much emotion tied up in that one simple picture. The immense joy that being on the fire department filled my soul with. The overlooked gift of being hold a brush to paint my nails. The ability to use my thumbs for a thumbs up. In a splinter’s worth of time, I went from great heights to a mind crushing low. I felt sad to have ruined my gratefulness, but as I talked myself through it, I came to realize that it was absolutely ok to feel what I was feeling. A hard memory doesn’t take away the joy of important moments with my people. Those two emotions can live together. I was reminded of a card I read this week…
“You can be angry and at peace. Curse God and whisper His name for help. You can be shaking and sobbing and strong. You can be grieving and grateful. Jagged and graceful. You can paint your nails and curl your hair. You can also not give a crap about any of that right now. You can hide quietly in your closet crying and dance to loud music in the kitchen while squealing in laughter. It can all hurt even when it feels good. You can feel so darn lonely in your head, and you can feel the vibration of the world holding you up in love and prayer. There is no book for dummies on this awful thing. I imagine your feelings change daily, sometimes by the minute. There is no wrong or right way to be. Just keep being.” -author unknown.
I cannot think of a more perfect way to say it. Just keep being.
Please leave me a comment, it lets me know you’re listening!
I have been bedridden since February. Not exactly how I hoped this year would start. I feel like I miss so much when I’m tucked away in the corner of my bedroom. Weeks tick by and I keep hoping to put the worst of this year behind me.
Enter Covid-19. Suddenly my babies are home all day every day, and I’m a first grade teacher lying flat on my back in bed. He hasn’t complained; each day he climbs up onto the bed next to me and we do math, reading, writing, science… nestled among the pillows. But my heart is sad, disappointed. I’ve been given this incredible opportunity to have my littlest boy by my side for weeks on end, and the reel of my mind spins fast thinking of all the creative and memorable things I could be doing with him during this most intimate season of learning. Instead I feel trapped; bound to the square corners of my king-sized bed and quickly losing my son’s interest in the monotony of the same assignments day after day.
My husband works overtime; committed to his full-time job while also managing all of the meals, the laundry, the errands, the breaking up of fights as the tension of this season wears on everyone. I see the overwhelm and worry in the lines of his face and in the soft hunch of his shoulders. He’s married 18 years, but acting the role of single parent to the children and caregiver to his young wife. It silently breaks me.
Like most people during these unprecedented times, I am grieving many losses. Cancelled trips, time spent with friends and family, going to my little’s viola concert, attending my firstborn’s high school graduation. All of the little daily comings and goings that make life seem “normal.” Add to that my inability to be up and around occupying myself, and my heart has felt heavy and anxious. I have intensely missed gardening. For years as the winter months dissolve I have started seeds in my windows that have grown to beautiful plants cradled in the warm earth and bearing armloads of delicious produce and extraordinary joy. During these months that I have spent studying the ceiling from my place in bed I have grown more and more sad that the therapeutic tending of a small vegetable garden won’t be happening for me this year.
Wood. Saws. Screws. Measuring and cutting and pounding and smoothing, and a triumphant grin from my big-hearted husband as he shows me the hearty garden bed he has built to coax me out into the sunshine. Since I hadn’t been able to start seeds this year, he brought home small potted stalks of green life, ready to place in the fertile plot of sunshine. Oh how my soul sang as I gave thanks for the opportunity to tend something so special to me.
It took days of reaching for strength, of practicing standing without being overcome by the pain and vomiting that has plagued my body, but one cool gray day it happened. I was gifted with a period of strength and calm in my body, and along with a first grader who was growing wiggly with math and phonics in my big bed, I grabbed my garden gloves and we made a dash for the large box of deep earth. Together with chilled fingers and dusty knees, my little and I carefully tucked the robust plants and some dry seeds into the well-worked soil. It took all of my portion of strength for the day, but when we finished I had such peace and an exuberant sense of anticipation to watch my garden grow. It was such a gift.
As I was closing the shades of my bedroom window that overlooks the garden, I peeked out at the neat rows of leaves and plant markers that I had finished a few hours earlier. I involuntarily sucked air in fast, sharp. My garden was in a state of upheaval. Plants toppled. Leaves torn. Stakes scattered. Ragged holes dug in the once smooth dark earth. After many days of not giving the raised box any notice, apparently our dog had decided today was the day to climb into it and go tearing around in circles, digging holes and trampling plants.
And I cracked.
In that moment, the future felt empty of all the things to look forward to. While I burrowed under my quilt and felt the hollow in my chest and the sting in my eyes, I thought to myself how absolutely minuscule it was in the big scheme of things. A garden. There are so many huge battles people are fighting around the world; cancer, unemployment, divorce, death of loved ones… the list is endless. My family is safe, employed, fed, and sheltered, and yet the toppling of my vegetable garden is what undid me. I started to feel a little embarrassed at my ungratefulness.
The more I thought about it though, the more I realized maybe we all are a little like that right now. Maybe we are all just one more thing from screaming at the sky and cussing out the dog for just being well, a dog. Let’s face it ya’ll, 2020 has been a loop-thrower for all of us. We are all faced with stress and change and uncertainty unlike any we have experienced. It’s not just the pandemic, it’s the pandemic plus all of the other little hiccups we normally experience as we go through life. For me it’s been surgery upon more surgery and complications that simply won’t go away and a flooded basement and a broken into camper and sick kid and a bunch of tiny little things that each on their own aren’t such a big deal, but when you throw them all on top of each other and then ice them with a global pandemic and sprinkle them with a life-altering illness, it’s enough to make a person crack. Cry uncle. Beg for mercy. Tell 2020 that we aren’t friends anymore, and maybe we never really were friends, and it should go straight back where it came from and take all of this crap with it.
Are you with me? I feel like there are a lot of yesses. We are in it together, so let’s get through it together. Let’s be gentle with each other. Let’s check in on each other even when we are the one that wants to be checked in on. Let’s look for ways to cheer each other on and hold each other’s arms up and scream our battle cry so loud and brave that it drowns out the fear and frustration and helplessness we feel and replaces it with the rising up of all the people who choose to believe that something better is coming, and that hope is worth grasping for.
Please leave me a comment, it lets me know you’re listening!