everything but the disease

The reality of the ripple effect of my circumstances that make this journey more of a trip up. It is no longer about walking from a to b but navigating the waves and the undertow and not getting knocked down. 

The accommodations chosen by others for me, the perceived projected needed unneeded and unwarranted ones are tougher than the strength to withstand a withering body.

No one told me this disease would create an ambivalence within me or undo my sense of right and wrong, which is sad 
..and push me toward a more forgiving and grateful spirit, which is good 
...nor that it would undo me emotionally, not so good 
...create a weariness I have never imaged, which also is not so good
...but that it would create a sufficiency in Christ, which is very good.

The tears have come and again and again. the sadness of losing out sometimes is too much to bear. I watch my precious friends and family, longing to jump in and play along, and I sit and watch from the sidelines. Their laughter invites me to join in to record and imprint the merriment of memories. Their love is palpable and yet if love could heal me I would be a walking miracle!  

I have gotten to travel and visit quite a bit this summer, and as I say goodbye, each hug is a wave of raw emotion and the sadness and goodness that envelopes me reminds me I have so much to fight for. I not only fight for me but for you and the future for more reunions with girlfriends and the Cassels crew and I fight because love doesn’t give up or give in. 

I am grateful for all of the love and all the encouragement and all the helping hands. Thank you for all the memories made this summer. I will cherish these sun-drenched days of the summer of 2019. 

With love, Victoria

be of good cheer

be of good cheer

Making your way in the world today
Takes everything you got
Taking a break from all your worries
It sure would help a lot
Wouldn't you like to get away?
Sometimes you want to go
Where everybody knows your name
And they're always glad you came
------------------
Get away, make a way, yield and let go. And always be glad you came.

Always be glad you hug. Just hug to the right and yield to the left. Gotta be smaller so God is bigger. And I feel small. I feel weary, I want to scream and cry, and fume and stomp my feet and have a temper-tantrum, and instead I lie down, I scroll around on my phone, wasting time and wasting away my joy. To yield is to be okay with the rest my body needs and ... to take a break from all my worries sure would help a lot.

For me to yield is to make way for others and find new ways around. It is not to lie down, but to allow things to pass for the time being, for this season.

As I reflect on how I have yielded to the inconveniences of my illness—I notice small things like I no longer walk with an open container—alcohol or otherwise. I no longer wear heels or jewelry with small clasps, and I avoid speaking when it is an especially slurpy day. I yield to wait for help and easily yield to others so I can bring up the rear, and in that way, I am being refined. I also see others in a different light, with more grace, and a chance for them to go ahead and take the lead. And I ask for more grace.

I may yield but I will not give in to ALS, nor will I give up my laughter. I've got a joke box for that—thanks, Maggie Mae. I am fighting the good fight.

In yielding, I receive the goodness of others. I see God using other's gifts so that they blossom and glorify God. This is the only way I can understand the helping hands that came together to make our house a home.

I also yield in obedience to God’s word and trust Him to bring us together in unity when we feel wronged by our excavator who has taken our deposit and continues to delay our project, five months and counting. God calls us to yield and live right-side up in an upside down world—when your shirt is taken, give your cloak as well. It is not easy to yield, but yielding to God is always better because in Him comes freedom from vindictive, anxious thoughts, and in Him comes the peace that surpasses all understanding.

Updates
Health | I’ve had my first round of infusions and, with a needle poking in and out of me for two weeks, I’ve learned to yield to the right and offer sideway hugs to the left.

Home | Still incomplete and unfinished, including incorrectly painted and peeling kitchen cabinets. Yield to the experts and call in Sherwin Williams for guidance and confirmation that we aren’t crazy. And why am I weary? The perpetual two more weeks.

Access | Yield to God and trust Him as our provider. Remember Proverbs 16:9, and know that man makes plans but God directs his steps, and his ramps and his pathways. 

This has been one of the longest months and this post is one of the hardest to share. Today, please pray for Steve and me. Pray for restored joy, for our vision to be honored, for workers to be done, and for our backyard to be completed. And healing, always pray for miraculous healing.

love, Victoria

Ride the Wave

Inside out, upside down, starts and stops, highs and lows. It has been a roller coaster and a whirlwind—inhale, exhale. This has been the month of May.

Starts and stops
I have nothing but awe for all of you who believed I could and would finish an 8k, and for those who walked with me. I couldn’t have done it without your strength, laughter, and helping hands. I have a fab T-shirt to prove that I am the red engine that could, and lots and lots of balloons to remind me of those at home were cheering me on as well. vrooom all the way!

In and outs
The port is in and so are the moving boxes. The port has been painful, but not those who helped us move in and un-pod. You, team, are a force to be reckoned with. It was a sight to behold and the help keeps coming to put this home back together. I am amazed and humbled by your helping hands. “Thank you” is never enough.

A rollercoaster of highs and lows
Sleeping in my own bed—high.
Realizing I can no longer climb in alone—low.

Almost being done on phase one—high.
No gas, flooding, and new support beams and floor jacks—low.

Everything in bloom—a high.
Waiting on the excavator—a low.

Hope for slowing progression and a cure—a high.
A trip to the ER—a low.

Celebrating Steve’s birthday—a high.
Possibly saying goodbye to dear friends—a new low.

Adrenaline—a high.
Not sleeping—a low.

A cyclebar ride, 50 minutes, 9.6 miles—high.
And the playlist—a high.
The friends and family that came along for the ride—another high.

The laughter and the tears—both highs and lows.

The endless prayers that show up in my mailbox—a high.

Celebrating Joya ringing the bell. Cancer-free—my best and most cherished high.

And more highs than lows. A high five for sure!

Inhale, exhale
Inhale patience, exhale grace.
Inhale the goodness of friends and family, exhale the chaos of getting lost in the maze of boxes.
Inhale new surprises, exhale disappointments.
Inhale insurance rigmarole, exhale Steve’s on it.
Inhale community, exhale self-sufficiency.
Inhale welcoming new friends, exhale thanks-giving.

With love, friendship and gratitude, Victoria

Slow down...

You move too fast
You got to make the morning last 
Just kicking down the cobblestones 
Looking for fun and feeling groovy

------------------

Steve: Let’s go for Boba Tea
Me: Can we go for a walk?
Steve: Of course
Me: Can we bring Albert?
Steve: Do we have to?
Me: No, but he needs a walk as much as I do.

Steve relentingly agrees.  Our conversation continues as we go across the walking bridge to the Hunter Museum, and then down across Veterans bridge to a downhill slope back to Coolidge Park. That’s where it gets hard for me to control my legs so I move too fast. 

Steve emphatically says SLOW down

Did my husband just tell me, an ALS patient to slow down? uh-huh. In frustration, he says: “Everybody’s just gonna keep going and I have to watch both you and Albert. If something happens I have to choose between you and him. If that’s the case, Albert’s out of luck!”...in the tone of the only adult in the room. This has been the theme of our life and marriage. I was laughing so hard, slow down? I had to stop...I couldn’t even move or I’d pee myself.

Really, we both want the ALS to slow down. We want the morning to last.

By the grace of God, these are our days and our moments, full of laughter, enjoying the gift of life.

I once told my friend, I pray for the days before my illness, the days I never knew how short life could be. These moments with Steve, these laughs we share, and these days of Spring and sunshine, and peonies, and roses and azaleas, these are the days we live and forget I have ALS. 

Yes, it has been confirmed it is ALS, and even though we knew... It is very different having a confirmed diagnosis and beginning to live it out. The next steps are pretty intensive treatments with infusions via a port they will put in. The infusions will be for an hour a day, two weeks on, two weeks off, indefinitely. This is to slow the progression. We will be traveling to the clinic at the University of Alabama in Birmingham every three months to meet with a team of specialists.

In the midst of this news, I had a retreat, time set apart for the weekend before Easter, and we listened to Matthew recount the story of doubting Thomas. It was not the doubt I connected with but that part where Jesus showed up in a locked room. I continued to pursue the idea of being locked in and that led me to Job.

Where God says: Who kept the sea inside its boundaries? 

I circled the word sea and wrote vast beside it. I continued seeking God and how in the midst of my limits and boundaries of a body giving way to a  motor neuron disease He would be my vast reservoir.  Jesus shows up in the locked spaces, He makes ways across the dry ground, parting the Red Sea. and I live out my faith and my hope in Him. 

So, join me this Spring—just kicking down the cobblestones 

Looking for fun and feeling groovy!

Ba da-da da-da da-da, Victoria

Getting Real

Real close.

We are closing in on phase 1 and our fundraising and this home renovation are closer to being done, closer than I can imagine. It feels like the perpetual two more weeks and yet we are making plans to move to the back of the house and surrender the front for reinforcements to strengthen the floors for the weight of the wheelchair.  and that is no longer a distant reality. 

Real with you.

After two consecutive falls and a UTI this week. It is hard to say it’s a long way off. I have never been happier to get a diagnosis of a UTI and know it wasn’t just one more symptom of decline. That is how we measure our days. Good or bad. We also measure our days with the closing gap of what I think is doable and what the reality actually is. Like me walking an 8k. I am not ready to give up the fight and so with Steve’s encouragement and those walking with me I’ll give it my best shot. Slow and steady. 

I do now approach life slower, in contemplation, what shoes, what outfit, when and how I maneuver in and through my days. In this measure, I have come to realize, I live in fear, not the big fear, but fear as in safety and security. I surround my self with contingency plans and safety nets, looking for ways to adapt. This is a new stumbling block, emotionally and physically. I get frustrated easily and exhausted more readily—having to steady my thoughts and actions.

And the steady generosity of our friends and family

Really gifted.

Getting real comes from you. Really knowing the gift of your love and support.

Next up: ramps and parking. And to move and unpack our belongings May 18. The more the merrier. Many hands make light work. Please consider lending a helping hand. 

We will be ready to unload, unpack and really make this home again. If you are available on Saturday, May 18th, we‘d welcome the help. Please email us if you can spare an hour or two: scarlson57@yahoo.com

Love, Victoria 

Nitty Gritty

Surprised by the request of details for our renovation? Nope, or Not! as Aunt Pat would say.
So for the curious, the DIYers, the designers, and all future guests... I'll do my best to share the transformation of two closets to create a wheel-chair friendly bath and home. We stole a little space from everywhere to open up doors and make maneuvering a tad easier.

We believe double rainbows are a double dose of God's beauty, and so in keeping, we doubled the arches and opened up a sunroom. A concession Steve made for giving up his walk-in closet for a wall of windows.

Here is your first glance at the space.

And onto the exterior: the ramp and parking. 

We longed not to sacrifice the gardens but knew it was my turn to make some concessions. We walked, we prayed and we circled our property for 7 days. Sound familiar to any fans of Joshua?...all but the trumpets. Fortunately, I had a vision to keep the garden and the adventure swing, and to drop the parking from the alley to behind our house. After we plotted and sketched we enlisted more help from our friend, Dan, who helped us reimagine the ramps and back entrance. It was collaborative and the most fun I've had with this process to date. 

Take a look... after all our sketching, I cajoled Steve into building a 3d model. With what we had on hand—one sheet of foam core, cereal boxes, hot glue, and left-over garden magazines. 

Well, back to reality—rub a dub dub, washing dishes in the tub. 

As for my health, next up is April 17th with an ALS specialist at UAB.  Current status: still falling down yet getting better about using my cane for longer jaunts and trying to make time for rest throughout Lent.

Grateful every day for each of you, your encouragement, humor, brownies, surprises, prayers, and donations!

----

Love, Victoria and Steve

Crowned with Gladness

I was having a bad hair day. After a few attempts I pulled it up into a stub of a ponytail. On a verge of a bad day, I took to my beaded and beautiful headband and crowned myself—a reminder I am a daughter of the Risen Christ.

It was a reminder for me that no matter what God is always for me—today, yesterday and tomorrow.

It is these small gestures, remembrances and signs, like that of a cardinal, that help me pull myself out of the muddy mess and pick myself up—they also make me smile. And as Lauren Diagle, belts out: Look Up Child.

I look up on some days and others I get swallowed in exhaustion. I also get overwhelmed, by decisions—and they are so many with the house on reboot... and trying to eat healthy which I fail at miserably, and exercising, not a total fail, and all the ideas swirling around in my head and my endless desire to reach out and say hello to all of you. This happens more often than I want to admit.

So, today I say hello, and happy belated valentines and belated birthday to those I missed, and that I love being connected and reconnected to my friends and sharing your stories and your joys, burdens, and sadness...and being able to pray with you and for you. It is a privilege. Thank you for inviting me into your heartache. Persevere.

So what is up... the crown, molding that is, on top of the drywall and the renovations are coming along as are the donations. We have made great progress finding steals and deals at local consignment and antiques shops, namely our new back door, the transom window and lighting fixtures. 

Thank you for your generosity and kindness, we haven't quite met our goal but are inching towards it and are incredibly grateful and humbled by your outpouring.

So today, be crowned and receive the goodness of Christ—step out and Look Up, Child.
-----------------------

Next up: sashes—windows and our family tradition, the St. Patrick’s Day Parade.

reclaiming our home

Steve here… my turn to check in. [for the visual processors, scroll drown for photos]

Early in our marriage, we had an old cruddy toaster oven and for some reason we decided we would resurrect it. We washed and scraped until it became useful again. At that point, we named ourselves “The Reclaimers.” Ever since we have gone out of our way to make use of things that had long lost their purpose. Our home has never lost its purpose—and our aim is still that all who enter feel welcomed and loved. As we forge a new path together...we are “Reclaiming“ our future.

Hence our “Remodel.” Currently, the back half of our home is now the domain of our contractor, Jeremy, and his team. We are living, as Victoria has dubbed it, in the “Tiny House Project.” We have a living room, the guest bedroom, and a bathroom. For a while there was only a plastic sheet covering the opening from the construction zone to our space. When the heat kicked up the sheet billowed into the hallway and we’d have to squeeze by to use the bathroom. And we just heard that Albert would periodically pop through a little hole in the plastic to check on their progress. That’s just like the game Albert and I play. I lock down the backyard and Albert finds a way out. Here we think he is safely tucked away each morning and he is out and about visiting the crew. They have since put up drywall to contain him.

It’s been cool to see the bones of this old house. The workers found the kitchen floor had been leveled with mortar. As they broke it up they found newspapers dated back to 1950s! I should qualify what I mean by leveled. As a 1928 bungalow there is not one level floor or ceiling to be found. “Somewhat flattened” is probably a more accurate statement when referring to the floors. Victoria and I have watched enough Fixer-Uppers to expect that inevitable call with the said problem. We have had two. After jack hammering all the mortar out, they found the floor joists needed a lot of remediation. Then, the foundation under the back entry way was utterly rotted. Our contractor, by the way, has been fabulous! He has been uber communicative, and willing to wait for Victoria and I to get home to discuss next steps, and surprise us with an archway and ideas to make the space lovely.

After work one day, I was shocked when I got to the back and found the door gone. They had not only taken out the door but the entire wall, and replaced it with plywood. I was sad because I had put so much time into reclaiming that door over the years, Without a portico to keep the rain away it slowly rotted much like its foundation. I had rebuilt the bottom with a 2x4, painted and rehung it, not one but twice. I was quite proud of myself at the time—exploring new territory. It wasn’t pretty, but it was functional.

Today Victoria and I were in the back measuring out spaces and places for the vanity, the broom closet, and Annie’s litter box. I’m off Monday so I’ll continue the reclaiming process, bringing up the extra glass panel doors that match the patio for the new butler’s pantry.

As Victoria spends much time sourcing flooring and tile for just the right look, at just the right price, I am relegated to, and admit, the only way I can help in this endeavor is to drive her from tile store to tile store. One benefit of living in Chattanooga is we are only 35 miles from the flooring capital of the world...Dalton, GA.

Next up: built-ins, and paint colors which make my eyes go blurry.

This is the first chance I have been able to express my thanks and gratitude for your prayers and generosity.

Love, Steve—and Victoria

reflections

It's that what the New Year is all about—reflecting on this past year, looking into the future and seeing who you want to be. For me, I am learning to reflect reality. 

So often my mind continues to move at warp speed and my body lags—this is truly what trips me up. Literally and figuratively. I don't even stop to imagine what is doable, I just long to keep doing and going, but both are now exceptionally much slower. Like getting dressed, tying my shoes, getting in and out of the car...these are all things I took for granted. I am no longer my 26-year-old self—this is not just my disease but life—it happens whether I want to admit it or not. Often in my mind, I am in a different space, a different place—and sometimes I am content to be right where I am. 

Whatever I see in the mirror, or in the reflection of a pool of water—it is all reverse of what I think and sometimes distorted. Right is left, left is right, up is down and down is up. Like Jesus, last is first.

This year I want to align my head and my heart, my doing and my being, my thoughts and my actions, my timeframe and getting to work on time.

So as I reflect, I long to simplify, to slow down and make time for my slowness—and be okay with what I can do and what I can no longer do. I can no longer pick things up when I drop them—I have to ask for help, for that and much more. Try it, help is a great gift—it perfects humility. And I'll try and accept my reality, I can no longer make plans every night of the week. My body needs rest. And really, I couldn't ever sing or dance, even all your efforts to help didn't help—but that is not the help I mean. The kind that makes you and me realize we were meant for community and not self-sufficiency—this is the gift that transforms hearts and lives, especially mine.

And I also want to be more thoughtful of others and make efforts to reflect the beauty that surrounds me. Seeing your generosity is as beautiful as your friendship.

Thank you for your continued help and encouragement. We are three-quarters of the way to our goal and I am grateful for each and every dollar you have sacrificed to help us remake our wheelchair-friendly home. And so the rehab is underway. Steve and I are doing well among the dust in a make-shift kitchen and our own tiny house project. Thank you, Maggie Mae, for all the jokes—they remind us to laugh, at ourselves and the chaos. 

Happy New Year! May 2019 be joyful and triumphant. 

living life out loud

 These are the words I am determined to share—the good, the bad, and the ugly—to live my journey out loud.

Ugly is my bruise that cascades across my shoulder from a fall that did a number on my left shoulder; I sprained a ligament and am in a sling for four weeks. This is also the bad, as far as timing. We have been packing and preparing for demo day, and I am even more at a disadvantage... mostly because I’m a little like a one-armed accident waiting to happen. Unlike a flamingo that is beautifully balanced, I am not, and I keep falling over. Dang, it has been painful and hard to sleep each night.

More news: they are narrowing down my diagnosis to an atypical ALS. It is sort of funny that first I’m an anomaly, then I get downgraded to atypical. The good: there is a medicine that might help slow the progression; the bad: possibly side effects... and the journey continues.

And the goods get better—YOU! The encouragement, prayers, support, helping hands... it is so good and makes me so weepy. That is good too. Our last two weeks have been fraught with emotion, love, meals, and pain. Each night, we light the hope candle and are reminded of God’s hope and return to a place of peace. This season we hope your heart will be full of joy and laughter.

And the best for last, I finished my book—it is a book of my ponderings about life’s celebrations, reflections, and living from the inside out—mostly it is a picture book. The good: I received my first printing of the journal version today; the bad: the hardback has been delayed due to the holiday rush. There is a limited number, but I am ordering more so please order yours. It might just feel like you are sitting down with a cup of tea and me.

Check it out: Clumsy + Inconvenient: Embracing the Unknown.

Joyfully, Victoria

off to the races

It started as a glib url referencing wheelchair races, and as only God’s timing would have it this week’s bible study was on Hebrews 12. “And let us run with endurance the race God has set before us.” Go ahead and laugh, I did. I love when I am that closely in step with God, or when he intercepts by glibness to tell his own story. Unfortunately… it is not as often as I’d like. That’s about me, my distraction and sometimes my own faith that falls short.

This is where you come in—where you stand in the gap and pray for me and have faith for me.

What an amazing example this past week was! 

My two friends call me Saturday afternoon, GIDDY…absolutely giddy, like Christmas morning, jumping up and down, laughing and crying kind of giddy. They called to share that they bought 50/50 raffle tickets while at the Maryland football game… and when they bought their tickets they boldly declared when we win this money is going to Victoria. They were faithful to believe God could and would bless me. I am not suggesting God is a slot machine for prayers and blessings, but I am suggesting that he gets the glory, no matter what. Christine and Beth were bold in sharing their faith, bold in sharing my story to a suite filled with Terp fans—my alma mater by the way. 

Now, I’m not saying our circumstance will always turn out for out for the best just because we pray, because sometimes they don’t. The raffle winner could have easily been someone else. But I sure do love it when our faith and God’s provision collide. 

And God uses our story to tell his.

And yes, they won and so did God! For all the people that heard this story in the suite that day, I pray God pierces their heart and draws them closer to him, some renewing their faith, some being introduced to faith—even though small like a mustard seed can move mountains.

And yes, praise God, my donations increased by $3,384. I am grateful on this Thanksgiving for their donation and yours—for the 15 families that have encouraged me through their own generosity and the countless friends that are praying, and those who have shown up to help us pack, or send thoughtful emails and funny texts. 

This Thanksgiving, I am also thankful I can still walk a 5K, slow and steady. As I set out tomorrow morning, know that I will walk with endurance the race God has set before me. And as the verse continues…”We do this by keeping our eyes on Jesus, the champion who initiates and perfects our faith”—and so I walk forward and run with my eyes set on Jesus, as giddy as my friends—arms wide open.

I pray that your time with family and friends is full of laughter, delicious meals and real connections that draw you closer. May you be blessed with patience and grace for all who you celebrate your own kind of thankfulness with.

Joyfully, Victoria

Looking for practical ways to help? We are busy packing and getting ready to store much of our home in pods to make room for the renovations. If you are available on Saturday, December 8th, we‘d welcome the help. Please email me if you can spare an hour or two: victoria.carlson@gmail.com 

vrrooommm

All my life, I’ve been called the energizer, aka vrrooom, and even sassy at times. Now, I am called clumsy. And I am having to slow down — not because of age, but because I’ve been diagnosed with a rare motor neuron disease, one that mimics ALS (Lou Gehrig’s disease).

It is either FTD-ALS, SMA or SCA, and my muscles are becoming unable to receive messages from my brain. As it has advanced (more slowly than ALS, thankfully), it’s made everyday tasks — including sleep — more challenging and painful. Eventually, I will be racing around in a wheelchair — back to vroom. 

In the end, I am so fortunate that my illness is more an illness of inconvenience, requiring mostly humility and patience. Moreover, I am blessed with humor, amazing faith, a stellar husband and saint, and awesome, funny friends and family that are my champions.

With grateful hearts, Victoria and Steve