About a month after I hit my one-year mark, my husband Mark and I had a very serious and emotional conversation. He pointed out that due to the lasting damage to my spinal cord, it likely wasn’t realistic to plan on staying in our home long-term. We’ve had enough time post-injury to get a good feel for where my body is going to land, and what my long-term challenges are going to be, as well as how that impacts our family life and capabilities as a family. For example, we’ve realized that long road trips may be out of the picture for us, as I cannot sit for long stretches without a lot of pain. Anyway, we had been blocking out considering what my injury meant for our living situation until that fateful day.

When it comes down to it, I am the major driver of projects and maintenance around our home. While Mark does a lot of the heavy lifting, I do most of the everyday maintenance on our house and acreage. This past summer, our kids have had to do all of it. And while that worked, and they had good attitudes about their increased responsibilities, we realized it isn’t viable long term for two reasons: 1. Having acreage isn’t their dream, it’s mine, and we don’t feel comfortable hijacking their summers for the rest of their childhood to sustain my dream. 2. They will eventually move out, leaving everything to us.

It was a hard decision to make, but rather than stay as long as we can, we decided to move while our kids are still at home so that we can establish a new home together as a family. As a matter of fact, the day of that intense conversation, we found a house in Boise that we were drawn to and will be closing on that house this week. The house itself is larger than ours because it has a basement, but it has a moderate fenced backyard with a pool that I will be able to use for ongoing physical therapy and just enough space for us to still enjoy being outside. It will give our kids a bit more space to grow into adulthood with lots of room for gatherings and fun for years to come!

I never, ever thought I’d be entering this season. Even if you would’ve asked me six months ago I would’ve laughed at you. We designed our house, wrote Scripture all over the studs before it was sheet-rocked, and have raised our family here for nine years. We transformed the landscape from dirt, sagebrush, and goatheads to a beautiful oasis that has hosted numerous parties, Sukkot gatherings, and more with our own hands. Every bit of this home has our family’s handprint on it.

But I have peace. And I say all this to encourage you – if you are going through a season you never thought you would, God is still with you. Sometimes He asks us to walk through very hard seasons, but it is never without purpose or unredeemable. I know that no matter how painful these next few months are, He has a greater plan and purpose for our family that I cannot yet see, and He will carry us every step of the way. I am learning again in a new way to let go of the things I hold tightly to and trust God with them. May He use this season to breathe new life into our family and draw us all closer to Him.

• Constant nerve pain. I can usually tune it out, but it never actually goes away.
• Tightness and extra pain behind my knees when I straighten my legs to stand after sitting.
• Weakness and balance issues with my right leg. This includes random muscles in my core, glutes, hamstrings, and calves that are firing but barely there.
• Bladder disfunction. I’ve only shared about this a little on here before, but basically my bladder doesn’t empty on its own so I have to use a catheter.
• No sensation or regulation of temperature from my mid-back down. I can’t feel temperature on my legs and I also can’t sweat or shiver to help regulate. This makes extreme hot and cold conditions very challenging for me.

Moving Forward

As I look forward into the next year and beyond, I’m making goals and figuring out what I need to do to accomplish them. I’m working on losing some weight because the more sedentary lifestyle I’ve had this past year hasn’t been healthy for my body. I’m using Trim Healthy Mama as a framework for eating better and trying to get more consistent with walking. I’m still meeting with my physical therapist every other week, but will be phasing that out at the end of the year. I’m meeting with a personal trainer next week in hopes of moving forward in that way toward becoming more strong.

I’m also working on other goals in my life that pull my focus away from my crazy body issues. Over the past few months, Mark and I have redone our downstairs bathroom and our pantry, making them both more beautiful and more useful. This next year we plan on redoing a few other things in our house as well.

I’m also just about ready to release my first complete year-long Shabbat school curriculum out into the world in just another week! This has been a labor of love for a couple of years and will be followed with 2 more years of curriculum.

Working on a few creative projects has helped me stay sane and see results in other areas of my life this past year which has been really helpful for my emotional well-being.

As life moves on, I plan to continue to press on towards the goals I’ve set and the things God has called me to. What else can I do for the One who made me, saved me, and calls me His?

I just hit the 9-month mark the other day and I couldn’t help but think about the comparisons to pregnancy. God designed 9 months as the amount of time the human life takes to become ready for life outside the womb. And I think there are some poignant parallels between this and my experience over the last 9 months.

In the first trimester of a baby’s development (the first 3 months), he develops the fundamental and critical body systems including the heart and brain. In my first 3 months post-injury, I regained the ability to walk and deal with normal life needs. Things were hard and shaky, and definitely needed a lot more refining and development. I went from being paralyzed in a wheelchair, to wobbly with a walker, to gradually being able to walk unassisted. There was so much unknown, but also so much quick change.

In the second trimester of a baby’s development, he grows dramatically in size and all of those systems that began forming in the first trimester grow in complexity and capability. In my next 3 months, I got into a rhythm of physical therapy and hard work. I regained the ability to drive, and with it, more independence. I began feeling more like the person I was afraid I’d lost.

In the third trimester of a baby’s development, he continues to grow in stature and fine-tune all those body systems so as to be able to live outside the womb safely. Over the past 3 months, I have been fine-tuning my body a lot. Figuring out what is still not functioning properly and how to laser-target those things. While I’m still doing total-body exercises, I’m working with specific muscles that are lagging behind to wake them up, and trying to get the right meds to help the systems that won’t seem to work on their own.

In infant development, there is also this idea of a “fourth trimester.” This is the first 3 months outside the womb, when an infant is adjusting to life on this side. It is best for them, physiologically and psychologically, to be held or worn the majority of the time, to be nursed and cuddled regularly, and generally to be kept close as they adjust and grow. I’m now in my fourth trimester. I’m working on adjusting my mind and heart to accept that the condition of my body, ravaged by the attack on my spinal cord, might be permanent.

I’m not going to lie and say it’s been smooth and peaceful. But my Father in heaven has walked with me as I’ve grieved the life I lost. He’s helped me navigate through the pain and difficulty I face with my everyday life, and I know He will continue to do so. He’s given me hope for my future and a determination that this pain and difficulty will not define my life.

But I will still pray and trust God for continued healing. I know that my body is fearfully and wonderfully made by a Creator who loves me and is my true Doctor and Healer. And I am held up by the love and support of so many family and friends who I know continue to keep me before our Father. I appreciate all of you so much.

I’ve had a special disdain for that phrase ever since it became popularized a few years ago. All of us probably know exactly what I’m talking about. Generally speaking, I refuse to let outside forces dictate to me what I should accept as normal in my own life. I’m pretty stubborn like that.

But lately I’ve been hearing that phrase in my head a lot.

Waking up to the burning sensation in my legs that’s my constant companion every waking moment? This is your new normal, Judy.

Standing up out of bed not sure if my legs will hold me up this time? New normal.

Accidentally forgetting to straighten my legs every few minutes while I’m sitting, to find that my knees give out when I go to stand? Yep, get used to that, girl.

Forgetting to grab a catheter when I need to use the bathroom? Shoot – this is your life now – you have to remember!

Everything in my life is so much harder than it used to be. Nothing comes easy anymore. And heaven knows it wears on me. Oh, to run once more – chasing my kids around or playing with my dog. To dance… Oh I long to dance again. Even to be able to do yard work without so much pain. I just want to feel normal. Not “new normal”, but real normal.

Because “new normal” isn’t normal at all. It’s horribly restricting and unnatural. It’s broken and seemingly not fixable. At least not by human hands.

Yesterday I read an article about temperature control in spinal cord injuries and found out that my body is incapable of shivering or sweating below my injury level (T6/mid-back). This can make being outdoors in a cold winter or hot summer kind of sketchy.

I’m trying to be strong, but I’m so tired of it all. Tired of the pain. Tired of trying not to be terrified that I will spend my next 40 years like this. Will I be able to run around and play with my grandbabies? Will I age prematurely living in a constant fear of falling because my body is so messed up? I’ve never been a fan of living with a lot of unknowns, and this just ratchets it up into another level!

I know this is likely the whiniest post I’ve written, and I’m sorry for being negative. Part of me doesn’t want to post it because I want to come across as strong and capable. And I am strong and capable. But I wish I didn’t have to be quite so much.

Today in the car I heard a song that really spoke to me. It’s called Desert Road, by Casting Crowns. I’m going to post a few of the lyrics here:

I don’t wanna write this song
I don’t want this pain to be my story
I don’t want this desert road
Are you sure this is the plan that You have for me?
Out here in the dust and clay
God, if there’s a bigger picture
It’s getting hard to see today
But I know that You won’t leave me here

I don’t know where this is going
But I know who holds my hand
It’s not the path I would’ve chosen
But I’ll follow You to the end
Lord, as long as I am breathing
I will make Your glory known
Even if it means I’m walking
On this desert road

This really does encapsulate a lot of what I’ve been feeling lately. I don’t know how people without faith in the God of the universe cope with something like this. I really don’t. I’m pretty sure I would’ve broken a long time ago if it wasn’t for the deep-down knowledge that God is going to use this challenge in my life for His glory if I let Him. And I do believe that, with everything in me.

Yeshua’s words in Gethsemane have taken on a whole new meaning to me. “Yeshua came out and went as usual to the Mount of Olives, and the disciples followed Him… And He pulled back about a stone’s throw from them, got on His knees, and began to pray, saying, “Father, if You are willing, take this cup from Me; yet not My will, but Yours be done.”

I still pray for healing, and I still welcome those prayers on my behalf. I know my loving Father has the power to work a miracle for me. But I also know He can work miracles through me even if He allows my body to remain broken. Maybe He has miracles in mind that He needs my broken body for. I don’t know. At the end of the day, I have to hold tightly to His words, “Yet not my will, but Yours be done.”

I will reach 6 months post-injury in two days. It’s crazy to think about. I’ve spent half of a year recovering from paralysis and trying to live my life as best as I can in the midst of the greatest trial I’ve ever known.

This past weekend I went on my first road trip post-injury. Our whole family drove to Irvine, California for a Messianic conference. I knew the trip would be a test of my ability to sit for an extended period. Like I said in my last update, when I flew for the first time, I really struggle with pain and spasticity in my legs when I can’t move for a period of time. Even just working at my desk for a couple hours causes a fair amount of pain. 15 hours in a vehicle was guaranteed to be difficult, and we were driving through the night with minimal stops to get there in time.

What I didn’t know was that I was going to fall full-force onto my tailbone a few hours before leaving town. Yikes! Not a fun experience. I didn’t break it, and felt okay afterwards (just a bit off-kilter), but over the next 15 sedentary hours in the car the effects of the fall settled in. I also forgot a dose of my spasticity medication, and the two together really messed me up. I arrived in California exhausted, in pain, and struggling to walk.

Over the next few days, my mobility and pain level gradually improved, and today as I’m writing this I’m feeling pretty much back to normal. We arrived home from our trip last night after splitting the drive home into two days. I’m so thankful to feel myself again!

That’s the negative part of my update, but it’s very restricted to just the events over this past weekend. In the past few weeks before this weekend, I have been experiencing some exciting small victories! One of the things I have not been able to do since my injury is to jump. That might not sound like a big deal (not many 40-year-old women spend a lot of time jumping around anyway, right?), but it actually impacts my abilities in ways you might not think about. The core function of jumping is the ability to land heavily on your feet without your ankles or knees buckling. This is a required function for jogging and running, as well as catching yourself if you trip. As someone whose general mobility is less-than-awesome, not being able to catch my footing is especially scary.

Well, one of the exercises I’ve been doing for some time now is attempting to jump. My right knee always buckles and shakes like crazy, but one evening a few weeks ago it just didn’t! I took my normal little jump and landed like normal! I was so excited – I called Mark in and showed him, doing it over and over again. It’s funny how exciting such a simple movement can be!

When I went to physical therapy last week, I showed her that I could jump at last, and she said that it was time to try running – something I obviously haven’t done at all yet, or even tried. She hooked me into a harness and lifted me in a contraption over a treadmill that took a bit of my body weight off and supported me in case I lost my footing. In that harness, with 80% of my body weight on my feet, I ran at 4 mph for 4 minutes!! It felt amazing. It was invigorating, and felt so freeing! Now we have a new goal to work towards in PT – slowly lowering the harness until I can run with 100% of my body weight!

So, six months post-paralysis. This past weekend I met a man who many, many years ago had Guillain Barré – the syndrome I was first wrongly diagnosed with. He shared how he was completely paralyzed from the neck down except being able to move his index finger. He is completely fine now and was impressed with my recovery 6 months after paralysis. Obviously our diagnoses are different and the recovery process looks different, but I am still so thankful for the improvement that I’ve made. I am consistently reminded that it could be so much worse. Plus, I am surrounded by incredible friends and family who lift me up and breathe life into my spirit on a regular basis.

Setbacks or small victories, I am so blessed.

Reading her story, it gave me renewed hope and determination of my own to never settle for my current physical state, but keep working and challenging myself to continue improving. It’s hard, and often frustrating that my gains are so tiny now, but I have to keep reminding myself that they’re still gains! And I don’t want to give up hope that if I keep working at it, I will eventually see my goals of being able to hike, run, and dance again.

Hope is a hard thing. It’s fragile and easily broken. One has to guard it so closely. For me, ultimately my hope is in the Lord and I know that no matter what happens, He will carry me though. I know that He made this body of mine and can help me have wisdom in how to continue to strengthen it and rebuild my nerve connections.

And I know that there will still be seasons when I’ll struggle with hope and doubt. But today? Today is a good day.

And if you want to hear an inspiring story, take a few minutes and watch Victoria’s story below:

My biggest worry was the plane ride. The spasticity in my legs causes me a lot of pain behind my knees every time I sit for more than a half hour or so. When my legs are bent for more than an hour, it gets progressively harder to straighten them again and they hurt like the dickens. Of course, being on a plane equals being stuck in a very tight position with no leg room for hours at a time which is pretty much a worst-case scenario in my new world. And Orlando is almost as far as one can fly from Idaho! It’s not exactly a short flight.

On the way there, we had a short flight to Salt Lake City, which was no big deal. I sit that long on a regular basis. But then we had the flight from SLC to Orlando, which was a solid 4 hours! That one had me worried. However, my wonderful husband was able to get us exit row seats, which gave me loads of leg room, and space to stand up and move around anytime I wanted!! I can’t imagine a better way to have spent that flight.

The conference itself was wonderful and we were so refreshed and filled up by the end of the week. Plus, Florida in January. Enough said!

The trip home was a bit harder. We weren’t able to get any accommodations for my injury, just aisle seats on each of the two 3-hour flights. I definitely struggled with pain and lots of spasticity. BUT, I made it. And that’s what counts. I don’t know about flying overseas, but I am happy to know that I can manage stateside flights.

For the most part, things are settling into the semblance of something fairly predictable. 

I have constant minor burning pain in my legs. The best way to explain the pain is that burning you feel when your legs get really cold outside for a long time, then you enter a warm building and everything burns for a minute while you’re acclimating to the new environment. I can’t feel pain (or temperature) from external stimuli, but I can certainly feel that. It’s very strange.

I can walk without assistance, but I struggle with neuro-muscular fatigue where, for no apparent reason, my nerves decide it’s too much work to tell my muscles what to do, and my legs stop holding me up. Sometimes it happens when I’ve been on my feet for too long, and sometimes it’s first thing in the morning. Thankfully, usually it doesn’t last long, but it’s unsettling because I can’t predict when it’ll happen.

I also struggle with muscle spasticity (like what is seen in cerebral palsy, but much less severe), which means my leg muscles are really stiff most of the time and behind my knees gets really sore and spasms when I’ve been sitting for too long and move to standing. I take medication to help with it, but it also makes me sleepy, so I can’t take too much.

One thing I haven’t talked openly about on here yet is that I also have a neurogenic bladder, which for me means I can’t empty my bladder without assistance. Before I was released from the hospital, I was trained in how to self-cath, which makes me simultaneously feel like a rock star nurse and like I’m 90. It’s pretty wild. 

I know all this sounds so rough (and I certainly welcome your prayers for continued healing!), but let me share some of the sweet things:

1. I am NOT paralyzed. After getting my correct diagnosis I realized that there was a 30% chance of never walking again. After spending a month in a wheelchair I have an appreciation for mobility that only being immobile can give you. I am so thankful to be able to stand and walk freely. I can also drive now, and I’m so thankful for the independence that gives me (and for my handicap placard!).

2. I have a great physical therapist who is helping me figure out how to continue my therapy at home, as my insurance coverage is resetting and I won’t be able to go to PT as frequently. I bought a treadmill and a friend gave me a stationary bicycle, so I have some good tools to keep progressing in my stamina, strength, and balance.

3. I have gotten to spend a lot of time with my hubby over the past few months. All the time in the hospital, plus so many drives to and from physical therapy has meant lots of great conversations. I married my best friend, and times like this keep solidifying that friendship. I’m so thankful for him.

4. This is a big one – I have gotten to show my kids steadfastness and resilience, as well as faith in action, over the past few months. Sometimes I wonder if our lives have been too easy, too pampered. I wonder if my kids will be prepared to be faithful in hardship. I’m genuinely thankful for an opportunity to demonstrate faithfulness in tribulation and I pray this sticks with them for the rest of their lives.

At this point, my recovery has slowed down quite a lot. While I’m still working hard on therapy, I’m also settling into a place of contentment and peace with this life that God has given me. There are definitely days where I panic that I’ll be stuck in this broken body for the next 50 years, but I’m generally more at peace. I still happily welcome prayers for more healing, but I more than that I simply want God to use this crappy situation for His glory in whatever way He can. I’m recognizing that this life is but the blink of an eye compared to eternity, and more than anything I want to live for that.

I have been looking back and forward a lot lately. I’ve been editing down the last 3 months of live-streamed services at The Bridge (which I always do, but am super far behind in!), and it’s crazy to see myself first in a wheelchair, then a walker, then a cane, and finally walking without aid. There are days that the last three months hardly feel real. Every week I drive past the hospitals I lived in for 14 days, and it feels surreal. Don’t get me wrong – I definitely don’t feel fully recovered! But those days of paralysis feel like a blur.

As we move into winter I have big plans for recovery. I reassessed my goals with my physical therapist yesterday and plan to use this next season to make major headway towards greater movement and stamina. I will have to be very intentional – it’s easy in the winter to hole up in my house and sit around all day. Instead, I just got a black Friday deal on a treadmill and will have to discipline myself to walk daily. Right now, I can walk for 15-20 minutes and then my legs hit neuro-fatigue, which basically means they stop working. It’s quite the experience, LOL. My knees (especially my right knee) are very weak also, which translates to no ability to “bounce” in my movement – no jogging/running, hopping, dancing, quick foot reactions & compensations, etc.

My goal is that by next summer I want to be able to hike again, which means walking much longer and being able to handle incline/decline, as well as the quick adjustments one has to make to stay safe on a trail. One of my greatest joys is seeing this beautiful world that God created, and I’ve become a bit of a National Park junkie. I’m hoping to travel east next summer to see parts of the country we’ve never seen, and I want to enjoy it to its fullest.

While working hard on recovering as much function as I can, I am also trying to really embrace all that God has to teach me during this season. I was in survival mode for the first couple of months after my injury, and while I was depending on strength from God to pull me through, I didn’t have a lot of time to spend really digging into His word and seeking His heart for me and my situation. Now that things are settling back into some semblance of routine and “normalcy”, I am spending more time reading His word and trying to learn and grow as much as I can through this. I don’t want to look back on this season of my life and find that I’ve squandered a chance that God gave me for major spiritual growth.

I just devoured (and am going to immediately re-read) a book by Joni Eareckson Tada called A Place of Healing. This book was such a blessing to me and really encouraged/challenged me to look at my physical state through God’s eyes. Instead of seeing it as something God needs to heal me from, I’m encouraged to look at it as something God can use to heal others. And honestly, the fact is that God already has healed me in huge ways. I can walk! I am not paralyzed any longer. Yes, I have constant pain and other symptoms, but I can choose to let that hinder me, or I can use it for His glory.

And so, I am doing my best to move forward. I am trying to step out of my comfort zone and let God use me more, and I am working to make headway in other goals I have (like all of my book writing at messianickids.com). (BTW, If you want to support my work, I’d love it if you’d share what I’m doing with others – I want to get these tools into as many hands as possible!) And now, I need to get back to one of the most important jobs I have – homeschooling my little crew who are growing up way too fast.

Blessings on your week,
– Judy

Last night I was laying in bed and thinking about being paralyzed. It might sound funny, but as hard as it was to be paralyzed and wheelchair bound when I was up and wanting to active, the hardest time to be paralyzed was when I was in bed. You don’t realize how much you move in your sleep to stay comfortable until you can’t move. Every time I wanted to roll over in bed I had to sit up (which was quite the feat by itself using the grab bars on the side of the hospital bed), shift my hips to the position I wanted to be in, and drag my dead leg into that position, then carefully lay back down again. And *then* I had to try to fall asleep again with my heart pounding from all the movement.

I am so thankful to be able to move freely in my sleep again. SO thankful. I already feel so disconnected from those days of being fully paralyzed that it was really good for me to remember last night how far I’ve come.

I want to talk about the power of hope and faith. When I was diagnosed with Guillain Barré, I had the understanding that I would eventually fully recover. The vast majority of those with GBS do recover fully, though it often takes a very long time. When I was in the hospital, I fully believed that I would fully recover, and based on the rate of my recovery those first 2 weeks I was confident that it wouldn’t take too long.

Now that my diagnosis was corrected to Transverse Myelitis, I know that I actually had a 33% chance of never walking again. And I’m thankful that I didn’t know that when I was originally paralyzed. I don’t know how that would’ve affected my resolve or my hope for the future. Staying paralyzed was never an option for me. The wheelchair was a rental and I purposefully didn’t make any permanent changes (like handicap accessible things) to my house.

After 2 months of fighting for my strength and health, I know that I have beaten that 33%, but I still have a 50%+ chance of permanent spinal cord damage. And there are days that that knowledge is terrifying and overwhelming. I still have no feeling of pain or temperature in my skin from my chest down, and a strangely-heightened sensitivity to textures, which affect my daily life in real ways. I still struggle constantly with my bladder and bowel function. And I have constant burning nerve pain in my legs. The thought of being trapped in this very broken body for the rest of my life is scary.

But hope and expectation are powerful things. Last week I connected with a woman who is close to my age who had an attack of TM over a decade ago. She has permanent spinal cord damage that affects her in some real (and constant) ways, but she hasn’t let that stop her from fully living. She is going places and having experiences that are bucket-list type things for me. And seeing that reignited my hope. That I don’t have to fear being permanently disabled. It’s possible that I might be, and it’s possible that I won’t be. But either way I can live my life to its fullest potential and be happy.

A couple days ago I learned that the young daughter of a friend of ours prays for me every day and wanted to know how she could pray for me better. I about cried. I am still so touched by all the people who have been faithful to pray for me and are still praying 2 months later. I still desperately need your prayers. I haven’t given up, but some days it’s really hard not to. Some days I feel like I’m swinging on a pendulum between despair and determination.

But I know that my God is so good, and that no matter what, His goodness will be in effect in my life. I really hope that His goodness will be made manifest through a complete healing, but I also pray that no matter what, I will be found faithful.

– Judy