This Is the World We Live In: Reflections of a Reluctant Adult in the World

 I had hoped to have my kitchen counter clear of clutter, polished to a shine, and ready for making holiday treats and feasts by now. But instead, it is completely covered in gallon zipper bags, a case of water bottles, fleece blankets, multi-packs of lip balm, peanut butter pods, sanitizing hand wipes, breakfast cookies, tuna packets, potted meat pop-tops, squeeze packs of applesauce, plastic spoons, tissues, Tide pods, and feminine hygiene supplies. Why?

Because there are just too many people standing at street corners, cold, hungry, lonely, and hopeless right now. So my second daughter and I began building these bags of goods. Her friend Mia keeps several in her car, so when she comes upon someone asking for help, she has something to offer. The gift bags equip her with a kind of freedom we rarely think about. With one of these in her car, she is free to make eye contact, to share a word, to offer something more than a blank stare as she hits the accelerator. And if it has to be this way, then I want to be like her.

At first, I thought I would just make four bags. But researching protein sources led me to buy in bulk for dramatic per piece savings and now the kitchen counter is swamped and I don’t know when or how I will find that surface underneath again. Except that I know all these will be gone too soon—because there are that many people out there, without their own tribe picking up the pieces after it all fell apart.

None of them have the same stories—how they got there. In my young adulthood, I always heard really simple summaries, assumptions really: It was drugs. They get on drugs and they spend all their money and lose their jobs and end up on the street. I have heard that story. It is the story for some, but it’s not everyone’s story.

Some trusted the wrong person without a safety net of their own. Some were scraping by, already on the margin working low-wage jobs in our high-rent area, when >insert random trauma< happened, there was nothing to cover the gap. For more than one, grief landed them here. Grief. Did you ever think about that? “I was taking care of my mama,” says M as we stand shivering on the pavement on a cold Saturday morning, “and then she died. I didn’t have anyone left in the world after Mama died. I couldn’t live in that house without her, so I came here. I had a job for awhile, but I lost it. I didn’t know how to fill out the paperwork so I got that wrong. I think I got it right now, so there’s some money coming, but until it gets here, I’m sleeping in the post office or the bus station most nights. The shelters are full on cold nights. Someone stole my backpack the other night. I lost my clothes.” He’s holding a black trash bag now with a few “new” things in it. He picked them up here, where donations are spread on a tarp.

He’s young. He looks strong and fit enough, but his teeth are missing and he speaks with a strong local dialect. He’s not dirty, though it’s surprising to me how it is that he’s stayed so clean on the streets for the last week. He asks if there are any gloves. They’re all gone, the few that were available taken already. The woman beside me whips off her own and gives them to him without a thought. There’s another one. If it has to be this way, then I want to be like her.

I think about my own company’s hiring processes—how much alike everyone is. I wonder… if an accident took my two front teeth and I couldn’t afford to get them repaired, would I be safe here? Would I ever be hireable commensurate with my education, ability, experience, and aptitude if my front teeth were gone—in this culture? Appearance matters so much. There’s an assumption about where a person belongs based on how well they’ve been able to care for their physical shell.

All the gift bags we assemble at home contain soft foods. Nothing with seeds or grains. Not even soft oatmeal bars with their flaky, grainy topping. Dental issues are rampant and many of these people are living in pain, unable even to chew an apple. My former boss’s wife had an abscessed tooth once. It went on for a long time, as they first tried homeopathic treatment over the standard (and very expensive) root canal option. I had one long ago too. I remember the intensity of the pain—and I lived with it only a few days before getting it resolved. There was pretty good insurance back then. My boss’s wife was in agony much longer. I remember talking with her about the sense of being “shaken” that one has to work through after suffering tremendous pain over time. There is a kind of trauma that you’re left with even when the physical pain is over. And for many of these, it doesn’t get to be over.

I don’t have solutions. Something’s not working the way it’s supposed to. The problem seems to be growing. Shelter is just not reachable for far too many people—even the “working poor.” Just simple shelter. That doesn’t even begin to address something like restorative health care. I can’t see where I have much of anything to give into the problem, to make a real difference. I’m thankful for those who do have resources and will use them—will use real estate in this high-demand area to provide walls and a roof sometimes. I’m sure those properties could be sold at enough profit to make some individual more than safe, more than comfortable, but lavished in luxury. Somewhere, someone is making a sacrifice, setting aside his or her own potential gain to serve those who can give them nothing in return. I know there’s beauty in that. But I can’t help but wish it didn’t have to be this way.

For the Kid Who DIDN’T Get Acknowledged This Awards Season

It’s that time of year. End of the school year. Time to acknowledge all the “mosts” and “bests.”

Most valuable. Most improved. Highest average. Best in sports, math, second languages, music, debate, character, virtue, integrity, helpfulness, setting an example… best in being the best of the best.

Superlatives abound, and at every gathering, exemplary versions of today’s youth are carrying away certificates, plaques, trophies, ribbons, medals, cords, and tassels.

And exemplary versions of today’s youth are not.

I know one of those exemplary overlooked youths very personally. I can’t understand how others don’t see what I see, but I know it to be a fact in her case. Therefore, I know it to be a fact in the cases of many, many others as well.

I suppose it’s simply impossible for finite humans to acknowledge every aspect of what borders upon infinite uniqueness in the variety of traits, attributes, gifts, talents, skills, and efforts imbued in an entire generation. I’ll acknowledge that to be true. Still, we do enough of the pointing out and awarding that at this time of year in particular, those who walk away empty handed can’t help but feel as if their absolutely adequate (and ultimately essential) existence just… isn’t.

This isn’t a post to oppose honoring effort or achievement. Believe me, it isn’t. Nor is it a post to support the now-ubiquitous “participation trophy.” Maybe that means something to a four-year-old just starting out in this world of competition, but to the more experienced, it quickly loses any luster and even rubs worse at the wound: Here, have a prize just for existing because there’s nothing else nameable about your worth.

What is this wound that comes with being overlooked? I think most of us at some point experience it—a longing to be seen, known, accepted, affirmed. And when we aren’t, the wound deepens. And when we try harder—serving a favorite mentor, teacher, parent, coach, friend—even joining our goals to his or hers—and then get skipped in the ceremony, it can feel like a blow of an existential nature. 

Have you ever had one of those days in traffic when your car seems to be the invisible one? Someone changes lanes and almost side-swipes you. Moments later, another person turns in front of you and in a screech of rubber-on-asphalt, you barely prevent the inevitable T-bone. While you wait patiently at a red light, the car behind you almost rear-ends you as if there really was an extra car’s length before that painted white line signaling the boundary of safe existence before the intersection. 

Does it make you want to scream at the universe, “I exist!”

Stephen Crane, an American poet who is considered part of the “Realism” movement, wrote as much:

A man said to the universe:
“Sir, I exist!”

“However,” the universe replied,

“The fact has not created in me

A sense of obligation.”

Does the overlooked athlete who showed up at every practice unless (s)he was too sick or injured, who ran coach’s errands and refused to be unsportsmanlike to the teammates carrying a sickening sense of entitlement for fear of damaging the overall esprit de corps want to say the same thing?  Or the plugger of a student who took the hard classes and studied late and managed a solid GPA along with extra-curricular activities but not only didn’t receive a single scholarship applied for but also didn’t get accepted to more than one of the schools applied to? Or the kid who not only managed to pass everything with effort, but also worked a job outside of school to help pay for his/her basic necessities and managed never to be tardy—not even once—but no one noticed that. No one noticed the kid who stayed off drugs all through high school though the parent in the home didn’t set the same bar of expectation for him or herself. The quiet one who never ran for student government but held the door without fail for the kid on crutches, picked up the paper towel on the bathroom floor instead of adding another to it, whispered, “I understand” far more often than spoke, “Why didn’t you…?” The faithful, persistent, diligent background people of all levels of performance and participation—but unseen. Unacknowledged.

As a youth in my own life, I had a foot in the camp of each of those. I made good grades and got acknowledged for that, but there was so very much more to me that no one saw way back then. As I have now reconnected with several from my childhood and teen years, I feel pretty confident in saying that we were all that way: known for one or two characteristics but nothing at all of the great width and depth to each of us. It’s far too easy to just attach a label to a person and think that’s enough. It isn’t.

When I look back, I see myself as just an embryo then, but full of potentials unseen, and longing to be known for all of me. I was not particularly athletic—and still am not, though I would love to be—but I was exuberant and positive about others’ performance and efforts, and so, in keeping with my personality, I tried out for and was voted onto one of the cheerleading squads at my school for most of my teen years. It was far too important to me—all out of proportion for its actual value—but it was an area that I felt equipped for and wanted to be integrally important to. There was one year in which I did not make the team and I felt crushed for it. I remember an older girl turning in her seat in math class to ask me about tryouts the day after decisions were made. “T,” I said as bravely as I could, “I didn’t make it.”

“What?” she responded, with genuine surprise. “Something is WRONG,” she said. And that’s all she said, but it helped. I had not been seen, but T, right then, saw me. No one else ever said a thing about it, and I suffered, at the time, through that year of being cut off from the activity that I loved, and tried again.

At the end of the next year’s season, at this time of year we're in right now, awards were being given, and for the first time ever, that year, I did receive an award for my part on the squad. The trophy still stands on the dresser in my childhood bedroom in my father’s house.

“Most Dedicated,” the plaque at the bottom reads.

I don’t recall exactly how that award was chosen. I don’t recall if it was just my squad-mates voting, or if voting included team members from the sport we supported, teachers, coaches, etc. I do recall that when I returned to my seat with the trophy, my hands shaking a bit, my sweet squad-mate J turned to me and said, “I never even thought of you!” She didn’t mean it in a negative way. In fact, she went on to affirm that OF COURSE I was the one who deserved that honor—“OF COURSE YOU DID,” she said, but again she emphasized, “I never thought of you for it though.”

And that was so honest that it stuck with me. I really was there. I really did exist. I was showing up to practice and games, staying on, doing my part, doing the extras, putting notes of encouragement into cubbies on game days, painting banners, putting myself out there in every way I knew how to do—and not being seen for it. “I never even thought of you.”

But the fact that she, a friend, a good person who cared for me, didn’t notice my consistency in that area did not in any way take away from the reality of the fact that I was there and doing my part and that it mattered. 

Nor does the absence of an award in this season for any of the non-acknowledged youth who have been showing up and doing their thing faithfully for the last four years in any way take away from the reality that they matter. And it most certainly doesn’t mean that their existence and value and uniqueness will never be seen and acknowledged either.

In fact, it already is. 

Oh, to believe that high school is just going to be a dusty memory one day, and that all the shining you’re going to do is still ahead. The opportunities to be the “you-est you” are still coming and you’ll rise to meet them—maybe even surprising yourself.

But even now, today, this moment, I wish I could make you know that you’re seen. Seen, loved, accepted, sung over loudly—and being used. Even when the limited humans surrounding you aren’t seeing clearly, loving well, accepting fully, acknowledging joyfully, or opening doors for you they might have authority to open—
There’s one who does, who knows exactly what he made you for, who is guiding, developing, directing, and providing. He’s not a cold, distant, clockwork universe without a sense of obligation to you. He’s a personal Creator and a Good Sovereign who refused to move into the very future he rules over without his beloved individual human children in it. He was called “the God who sees me” by an outcast who had received no favor at all from mankind. He saw her truly.

He sees. He knows. He has plans for you, now and in the days ahead. He made you for good works that he prepared also for you to do and his eye is never off you. Your story is not the same as anyone else’s, but it is yours and that is enough, because it is being written by one who knows you intimately and cares about every detail, who created you and equips you for every chapter. So be strong and courageous and in all your ways acknowledge him and he will direct your path—and say to you, “Well done,” and rejoice over you, no, even EXULT over you. This is the greater reality—greater than anything thought of in our modern philosophies.

You do exist. You are seen. You matter.

On Waiting for God

Life Lesson

Our homeschool Bible lessons have led us now to John’s gospel. The girls and I are taking this beautiful book in small, savory bits. We’re listening carefully to the Spirit-inspired voice of an insider, a bosom buddy of our Lord. And we’re hearing reminders and encouragements that address deep issues of aching human hearts.

We’ve imagined the reality of walking with the Lord, eating with the Lord, wiping his feet with our own hair. We’ve re-enacted reclining against God incarnate and sharing a whispered exchange. John makes Christ’s physical presence so prominent, personal, and appealing. Oh, how we long to see him face to face!

And yet, John makes sure we hear how the physical presence is not always as important as physical distance. He is careful to prime us first, in Chapter 11, for what is coming, knowing we’ll need the reassurance. “Jesus loved Martha and her sister and Lazarus. So…”
Don’t miss that preface: Jesus LOVED the sisters and Lazarus. SO. Believe he loved them before you read on.

The one Jesus loves is sick. The sisters have sent for him. Their confidence is in his presence. After all, he told Martha—in gentle rebuke—that Mary had it right when she planted herself at his feet for his earlier visit. Now they need him. And he loves them.

But he doesn’t go. And they can't see it. They can't see that the reason he doesn't go is actually because he loves them.

Can’t you taste Mary’s shock and sense of rejection as she sits in the house, four days past her brother’s death? The Lord has let her down. She called, she expected, and he didn’t come. And when he did finally come, she is too numb, paralyzed by disappointment, to go at first to meet him.

The Lord doesn’t take this lightly. There is no patronizing pat on the head, no smug “watch and see.” No. He knows full well that his delay, though for everyone’s greater good, has been deeply painful. It causes him great anguish in his own spirit to see Mary and the others weeping. I believe he also knows her grief is not just over the death of her brother, but the death of her expectations as well.

While the sisters wait and Lazarus dies, Jesus tells his disciples “For your sake I am glad I was not there, so that you may believe.” His absence will be more valuable than his presence. In hindsight, we can see why. It is good for all who wait on the Lord to have this example before us.

Fast-forward to Chapter 16, where we hear something like this again. Jesus tells his friends that he is going back to the Father. The disciples grieve. (Whisper it in our ears again, John, as we get the bad news. Remind us that he loved them. So...)

“I tell you the truth,” he says. “It is for your good that I am going away. Unless I go away, the Counselor will not come to you.”

How is it, I ask the girls, that the presence of the Holy Spirit can be better for the disciples—and by extension, better for us—than the bodily presence of Christ himself? To my small mind, it is difficult to grasp—and grasp is exactly what I want to do!

Oh, how I long for a God with skin on! I want to cling to him in the garden. I want to crawl into my Abba’s lap. I don’t immediately care so much about the omnipresence of the Spirit.

I long for the tangible in part because I am still immature. But to walk by sight and touch alone is to stay little. My heavenly Father who loves me does not want me to stay little. It is for my progress toward maturity that I live now outside Christ’s physical presence. It is for greater things—greater glory, greater knowledge of the fullness of his power—that he left in body. But he did not leave us alone. He loves us and so . . . he left us—left us indwelt with the one who will guide us into all truth. Believe it! And yet his physical absence is only for a time. He will return, in bodily form.

Remember, John says: He loves us. And so it is for our greater good that we learn to walk by faith, and for his greater glory that our maturity comes to completion.

--Rebecca Cochrane

From November 2010.

Update: Improving and Adapting

The sun comes up, it's a new day dawning, it's time to sing your song again. Whatever may pass and whatever lies before me, let me be singing when the evening comes. -- 10,000 Reasons, Matt Redman

I suppose it's also time to give you good people an update about me. I want to start off by saying that I am SO MUCH BETTER, and while not fully restored to physical abilities, I have seen progress. Not everyone does. I'm still hoping for more progress, but if it comes, it will come slowly, and so every day, I have to consider: What if this is the most improvement I will get? Can I live and work with this? The answer is "Yes." So each day that I get to see even a tiny tick of betterment--slightly less tingling pain, slightly more sensation, more stamina on stairs or during a longish walk or while standing to deliver a presentation--each day something like that presents itself is a bonus to me.

I would not qualify my physical condition as a result of the transverse myelitis attack on my spinal cord as debilitating.

For that, I am so very thankful. Many people who are hit with this and similar rare spinal cord diseases suffer with paralysis, long-term pain, and loss of use of limbs and/or digits. My residual effects are minor in comparison to what I have learned about many others.

My condition is not debilitating, but it is still challenging. Pain is mostly under control with medication, but the medication does not help with the numbness that I still have in my lower left leg and foot. I have recently regained sensation in my left heel, though, and that has been super-encouraging. That numbness is a matter of the nerve damage in my spine, and there is no drug that can repair the damage. Only time, good nutrition, and the power of God can address that. 

In my case, I have insecure footing that comes from that numbness, pain in the form of tingling that is generally manageable with gabapentin, taken three times daily. The perception of movable bands of weakness and fatigue in both right and left legs--which is a phantom weakness--is getting less and less. I'm hoping that continues. My muscles are actually fine, but the damaged nerves in my spine are firing off desperate and inaccurate signals to my brain telling me my legs are shaky, weak, about to buckle under me. I keep climbing those stairs to prove to my brain that it just isn't so. 

So, I'm continuing in hope that I might see more improvement, but at the same time making some smallish changes around the house and office to accommodate my particular challenges and make regular, daily life as manageable as possible.

Most of these are taking actual physical form, but some are activity oriented. Eventually, I'm told, I will need some physical therapy, but in the meantime I try to get as much normal movement in as my legs and heart (cardio was a mess while on prednisone--heart rate and blood pressure stayed elevated no matter what I did; I am now off the steroid and already see a slight decrease in resting heart rate; hoping blood pressure will follow suit and drop back down near my previous normal range). My brothers and friends help me with this by constantly challenging me to FitBit steps competitions and I'm keeping up with them as best as I can right now. It takes a team and I'm grateful for mine!

As the weather warms, I plan to tackle some altitude in the real world.

I shared in another place that the wonderful man in my life (his name is Chris) and my good friend Jordan, with other friends Cathy and Jack and Ashley and Woody stopping in to see if they could help too, tore out and replaced my stepping stone walkway to my back door. They did a wonderful job of removing a path that was gappy, uneven, and treacherous for not-so-nimble feet, and now I walk safely and as smoothly as possible to and from my car and home. I am so thankful.

But I'm not going to be able to easily mow the steeper parts of my yard this spring and summer, and already, the grass back there is beginning to rise up in scattered clumps that demanded attention. (Chris did the initial mowing for this year for me.) The sloped area is not large, but it was already difficult for me to manage on my own with my small but hardy Murray lawnmower that I depend on to partner with me in that job. Murray and I struggled even when my legs and feet were fully in this game. So some landscaping is on the horizon, and soon.

Front slope

Back slope, where the rainwater also collects.
We've had actual algae growing on the mud at the base of this one.

A small portion of my tax refund is going to some more mulch, gravel, dogwoods, azaleas, and groundcovers. I'll have to stage the landscaping plants because they are so expensive, but the plan is to put in a few feature items, groundcovers, and then mulch the slope and use gravel at the base to turn the muddy areas (one even has ALGAE growing on top of the clay mud after all this rain) to make them as maintenance free as possible. I will still be able to mow the flat grassy strip above and below each area, but the slopes will hopefully be mostly hands-off after this project is done. A married couple who are also outward-thinking, sweet and supportive friends, have offered to come over on "planting day" once I set the date, to help dig and plant and mulch. That will make it so much more fun and help the project move along quickly as well. It makes me look forward to it. So I told Dave and Christine I would let them know after I "call before I dig" to have utilities marked, and then purchase the plants that I'm able to do in phase 1.

Dinnertime prep and aftermeal cleanup have gone fairly well with the exception of one hard day last week. I am giving myself a little bit of grace in this area while I learn how to do the same things I used to do when they do contribute to a building of late-day fatigue or pain. I am allowing paper plates at the dinner table at least once per week. But I decided that it might help me to invest in an anti-fatigue kitchen mat to remove some of the standing pressure that increases the tingling pain. Just as I was researching those, and finding them MUCH more expensive than I expected, I got a promotional email from Brad's Deals with a deep discount on a selection of cute mats. I couldn't believe it. I was looking at 1/2" mats on Amazon with mediocre reviews for $50 each, and here on Brad's Deals was a 1" mat with a number of cute, kitcheny decor patterns, for $16.00. I snapped one up and it arrived earlier this week. After using it in my sock feet for a couple of days, I must say it really does help relieve a bit of pressure. So I went back to the site to see if there were any left and whether the promotion still worked. It did, so I ordered a second one. My plan is to have one permanently between the sink and stove, so that whether I am washing or cooking, I can have a mat always there. Then the other will go at the end of the kitchen bar--the "prep" area, so that if I am chopping veggies or making lunches, I can always have one to stand on there. An easy, inexpensive bit of assistance!

I traded out my desk chair at work for one made for a shorter person and put a lumbar support pillow in the seat of it. Now there is no chance of my legs "dangling" from the seat and possibly putting pressure on any blood vessels to reduce circulation. In the past, if that happened, I would just adjust position and restore circulation. But today, if that happens, it is almost immediate pain. Let's just try to avoid that entirely.

This is adaptation. These are small adjustments. No matter how long this condition lasts--whether it is months or years or the rest of my life--there are things to do to adjust and to keep moving forward in the tasks we're called to keep doing. Life is still worth the effort.

And I can stand and walk to do almost anything I need or want to do. Running--such as in playing backyard baseball--is still really not an option. I'm sure to stumble and fall. I hope this improves. But if it doesn't, I'm still gratefull.

My perseverance is so small in comparison to others and what they are working through. I think of the Wounded Warriors. I think of those paralyzed in accidents or illnesses. I think of children born with harder hardships than mine.

But on some days, if I'm honest, I still ask: Wasn't it enough already? It seemed like enough already. I'm not whining, but I think it's realistic and a cause for me to look at others with more compassion, no matter what level of challenge each faces: No one really has it easy. To diminish one's burden with a "could be worse" response doesn't actually help encourage them. It may be true that it could be worse, but that doesn't in any way mean it isn't what it is. Lord, help me see them too. Help me see what they're carrying and say, "I know; me too; soldier on--it's worth it." And maybe, if enough knowledge and insight is afforded, also lend a hand. At least my hands and arms are strong and working. There is that.

Let me be singing when the evening comes.

Transverse Myelitis: The Culprit Was Coxsackie

Quick update following a neurologist appointment again today.

Earlier in the week, I experienced some new sypmtoms related to the myelitis and/or the medications I've been taking, so I had another appointment today to get those checked out and try to determine whether there was new lesion activity going on.

The symptoms that showed up were some fuzzy issues with my vision, a burning sensation up and down the thoracic segment of my spine, radiating small spasms coming at close intervals on both sides of my upper back, mild numbness in both hands plus my tongue and cheeks, and a slight tremor in both hands resulting in very poor dexterity and fine motor skills.

So I called, and went back in today.

While there, I learned that results of the last two tests were in and I do not have neuromyelitis optica, when the myelitis is present on the optic nerve. This is VERY good news. My neurologist says the vision issues as well as the tremors and hand numbness/dexterity issues are almost certainly related to the high dose of prednisone I am on and should resolve as that amount is able to come down over time. She wants to get me down to 40mg as soon as possible, as long as the inflammation in my spine can afford lowering the dose. We'll start on that again soon.

She also prescribed me more sleep, and I am required--if I am to get well--to say no to some of the household and personal responsibilities I am trying to always accomplish. I must get more sleep, as well as 30 minutes horizontal with eyes closed at the end of every work day for a bit.

Now, the cause:
We learned that I have active antibodies operating right now in my body, looking for a coxsackie virus to attack. These antibodies have been known to attack the brain and spinal cord in the past, causing types of meningitis and myelitis. The neurologist is quite confident that it was exposure to the coxsackie virus, followed by an immune response that turned autoimmune, that caused my transverse myelitis.

I had coxsackie--commonly known as the generally mild and reserved-for-childhood disease hand, foot, and mouth--when my oldest daughter was about 18-20 months old. I thought I was immune to it, but apparently there are two strains (A and B) and numerous varieties under each of those strains. We do know that my two younger daughers had the disease this past late fall/early winter. It was almost epidemic in both their schools. So it was also in my house. It is likely this exposure that my body responded to. I did not have sympoms of the illness, but it must have been in there somehow. Perhaps my earlier exposure had something to do with how it failed to present this time.

So, there are some answers. The good news about the coxsackie response is that, while it does do serious damage, it has never been documented to be multi-phasice. That means I do not have to worry about a recurrence of lesions. Unlike multiple sclerosis, which can produce new lesions over time for a person's entire life, this should be a one-time thing.

The other really good news is that myelitis from coxsackie is more likely to affect people much younger than I am, and I nearly was brought to my knees thinking of how close it might have been to harming my young and active girls, with all their years of life ahead of them. I am thanking God that it came to me instead of to them.

I do not know if the scene in Job, in which our enemy comes to the Father asking for permission to afflict others, still occurs. But it occurred in my imagination today. I could see him coming and asking to give this disease to my track-running and hurdling Miriam, or to my always tumbling or unicycle-riding Jill, and seeing my Father flare up in absolute resistance, responding, "By no means may you touch one of those children," but then, perhaps, knowing how much I would prefer it, and knowing how I have asked him before to let me know what it is to carry a cross, and how I have gone to the mat with him in the past and asked for him to transfer Jane's illnesses to me, that he might have answered, knowing he was going to give me more of himself, "But have you considered my servant, Rebecca?"

If a parent can carry an affliction for her child, she will. Every single time. Like I said, I do not know if such a conversation happened, but if it did, so be it. I say it again: SO BE IT. Let it be me and not one of them. I will stand or sit or crawl in that gap.

As to healing: The prognosis is still the same at this early point. Roughly 33% of people's bodies can heal from demyelinization. Roughly 33% will attain partial healing. Roughly 33% will not heal. Only time will tell. The doctor today said again, at least two more months before we should even try looking with a new MRI. At least a year and possibly two before full healing will occur.

So, rest, eat well, adjust medicines, exercise and stretch as much as possible to keep muscles healthy, pray, rest some more, and keep putting one clumsy foot in front of the other.

Right now, I'm encouraged, and thankful, and I can do what's next.

Love you all. Thank you for reading.

Past posts:

1. The Surprise Diagnosis: Transverse Myelitis
2. High Hopes and High Places
3. What's on Your Nerves? An Update
4. Meal Train for Our Family--service opportunity we won't turn away yet
5. More Changes--in the Wrong Direction

More Changes... in the Wrong Direction

Today has not been a good day, illness-wise.

Yesterday, I began experiencing some spasm-like sensations in the thoracic area of my back. They radiated out around my ribs in both directions. I had trouble sleeping due to the spasms.

Today the spasms are gone but the intensity of tingling in my left foot is steadily increasing again. Additionally, I am experiencing some numbness in new areas: both hands and my face, particularly my mouth, tongue, cheeks, and jaws.

I have a call in to the neurologist about the changes. They might be related to changes in the prescriptions that I am on. The NP reduced my dosage of prednisone from 60mg daily to 50mg daily, beginning yesterday, and increased the gabapentin from 500mg daily to 700mg daily at the same time. I am not sure what effects those changes could be having.

I'm a little scared, to be honest. I wrote out a notecard today and found handwriting to be very difficult. I learned to letter in college and have had good handwriting that pleases me to look at. Today, my handwriting resembles that of my grandmother's when she reached her 80s. Dexterity for fine motor is just not there.

Does this mean new lesions are forming in the myelin somewhere? Or is the a side effect of the medication? I have left a detailed message with the NP and am waiting for her response. In the meantime, perhaps providentially, the imaging center called to set up my next MRI. Upon talking to the scheduler, she chose to secure the next available spot for me, which is less than two weeks away, rather than wait for a May/June option that was in the original instructions. She told me I could change it to a later date after talking with someone in neurology today, given my current situation. I can see that only as an act of providence--God's provision for me in advance, before I even asked him--and take encouragement from it. He sees. He knows.

Please pray for improvement and no new attack. Please pray for prompt care. Please pray for my eyes to be set on things above, because I admit it: I'm scared. I want to get better and worse was not on my agenda for today, or any day. Please pray for peace.

What's on Your Nerves? An Update

Thanks to my friend Renee for this meme and the chuckle that came with it. We have to keep a sense of humor, no matter how hard it gets or how long we're asked to wait. Wait on responses. Wait on answers--even those that might not ever come. Wait for healing.

And that's basically what yesterday's one-month post-hospital followup with the Outpatient Neurology office was. An appointment to help me know how to wait some more.

I promised an update, so here it is:

It's been two months since the mysterious bite or wound that may or may not have started this strange process rolling, and 49 days since I woke up with a tingling, painful, numb left foot. It has never "woken up."

My appointment didn't go exactly as I expected. I had been told in the hospital upon release that I would get another MRI yesterday to see if the spinal cord lesions were settling down (less inflamed), disappearing, or (hopefully NOT) multiplying. But upon meeting with the NP there, and reviewing my situation, she decided an MRI would not provide any valuable information.

That's because my symptoms aren't showing up in new places--except very possibly in my vision. It does seem softer in focus than it was before all this started. The NP decided we should check for neuromyelitis optica just in case. But the numbness and tingling and pain are all still in the same area: primarily left foot and leg; secondarily right foot and lower calf. Though the presentation varies--some days there's overall numbness; some days localized bands of tightness with weakness; some days intense tingling; some days a buzzing sensation that comes and goes intermittently, as if my cell phone is set on vibrate and stored under my skin. But though the sensations vary, they present in the same areas, and that, she says, means there are no new lesions at this point.

So yesterday, I had my reflexes checked again and reflexes are still working. This is still good news. She checked muscle strength and that is decreasing. I can tell and was confident she would discover that. My legs do feel weaker. I stood a longer than normal time at church on Sunday because I had opportunity to teach, and by the time I got to the main worship service, I really could not stand comfortably through all the worship songs. I could feel a little shakiness that suggested I should sit down before doing so became embarrassingly automatic and unavoidable. Physical therapy was discussed briefly. No appointments were set up for that yet, but that will be in my future and probably soon.

My medications  have been adjusted some more and this is good. I am down now to 50mg of prednisone daily (from 100mg intravenously in the hospital, to 80mg and then 60mg orally at home) and that will continue to taper down over the next month or two. But she took me up on the gabapentin for nerve pain, in hopes that some more of this tingly and tight-bandedness that I feel all the time might decrease. It will take several days to ramp that dosage up gradually but I might find some relief from it by the end of the weekend.

I'm to continue with the nutritional cautions of before to provide the nutrients needed to restore myelin and to avoid the foods that would affect blood sugar levels negatively--a side effect that prednisone can cause and really exacerbate. So I'm low, low carb, no sugar, high on proteins and good fats, omega-3s, with some vitamin and other supplements. I am trying the Lion's Mane mycelium along with the purified fish oil, B12, D3, collagen, folate, etc. that I have been using for the last month. I've added beta carotene now that eyesight seems to be doing something weird.

I gave another hearty donation of my blood for testing yesterday. There are a few different things the NP wanted to look at that would show up in blood. One is the presence of ANA antibodies--the markers for autoimmune issues. I had elevated ANA levels a month ago, suggesting strongly that the demyelination was the result of an autoimmune attack. Usually, that's a one-time thing and if so, ANA should be going down. If it is not decreasing or if it is even increasing, then there could be concern for a future attack and different therapies--such as a blood plasma replacement--would be considered. The second test has to do with my eyesight. Apparently it is possible for something like this to hit the optic nerve, and some marker for it would show up in a blood test, so she wanted to check for that. I do not know at this time what kind of treatment would follow if my eyes are being affected by this whole thing, but would ask for prayer now for not just legs but eyes too. As an editor, my vision is critical to my job, and my job is critical to my (and my children's) survival. (And that's not to mention that at this point, my job is also my ministry, and I would hate to consider that I might not be able to do it well enough to continue on in it.)

In all of this, the NP kept reminding me that we are talking about months and maybe even years--and not days and weeks--in managing and watching and tracking and treating this. I need to be realistic about that. This is reality. This won't be over by summer time, most likely. I need to set appropriate goals and expectations and not get discouraged when it does take the actual time it's going to take.

In the meantime, I am truly thankful for the love, support, prayers, encouragement, and practical help that so many have literally lavished on me and the girls. Meals! And a new sidewalk that isn't treacherous to walk on with numb and uncertain feet! I am truly thankful that my condition isn't worse. I have heard from others who were attacked just as shockingly by transverse myelitis and Guillain-Barre syndrome and similar spinal cord diseases who lost much more mobility and experienced much more pain for a longer time than I have. I recognize the mercies I have received and do not take them for granted. And whatever this turns out to be, it is, eternally speaking, temporary. I know that. I'm still asking for healing here and soon, but I know this isn't all there is.

His grace is sufficient. What does that exactly mean when you're suffering and wondering about the now and the next and the effect it will have on the life you are trying to live? I'm asking him to make that clear to me. What does it mean that his grace is sufficient when my body is not doing everything it used to do well? Right now, I would say that it means that my focus on the "necessary tasks" of my life might not be as eternally significant as I think they are. If I can't do what I thought I would do with these legs and these eyes, my place in his eternal fellowship is still secure, because I don't earn it, and my purpose isn't lessened. I'm still his. I'll still be in the throngs, with a role. I've lost nothing, really, in that big picture. So here and now, I'll love him still.

Strengthen the weak hands,
    and make firm the feeble knees.

Say to those who have an anxious heart,
    “Be strong; fear not!
Behold, your God
    will come with vengeance,
with the recompense of God.
    He will come and save you.”

Then the eyes of the blind shall be opened,
    and the ears of the deaf unstopped;

then shall the lame man leap like a deer,
    and the tongue of the mute sing for joy.

                                 --Isaiah 35:3-6


The Surprise Diagnosis: Transverse Myelitis

Meal Train for the Cochrane Women

What Is Transverse Myelitis? (Mayo Clinic)

High Hopes and High Places

I suppose I can point back to my belief in "no coincidences."

For more than a year, I've been looking out my kitchen window at the view of Little Pisgah and Bearwallow Mountain and telling myself I will get new hiking shoes, so that climbing those and the other high vistas in this area will be easier to do. I haven't owned hiking shoes in many years, and my sneakers and duck boots don't give too firm a footing for those kinds of inclines, even when my feet are healthy. But I have a love of high places, and I have meant for some time to keep returning to them.

Then this happened. This attack on my spinal cord. This numbness and nerve pain. This lack of coordination. I stumble in the uneven block and gravel walkway from the drive to the house steps. I have to look at my dead feet when I use the stairs to be sure I'm actually stepping onto a tread, up or down. Slippery wood planks after all this rain make me gasp in public--am I on solid ground? I can't actually tell.

The high places seem farther away because of the new situation. But farther away does not mean unreachable.

Last week was the most painful I've had in this experience with transverse myelitis. At times, pain was excruciating. As I passed the four-week mark, I admit, my spirits were not in high places. I had some moments in the pit. Worried. Wondering. Am I strong enough for this kind of chronic pain? What if it never leaves? What if this is what I have to face daily from this point forward? How can I function? I need to provide for my children. I need to be present for my children. I want to keep serving in my church, job, and community. I have a new relationship with a kind and caring man that I would like to progress in. But this pain was all-encompassing, consuming. I would say it "bore into my brain." Maybe that helps you understand what it was like in its relentlessness.

I am hoping that I have turned a corner in the pain department now. It's early. I don't want to be unrealistic. The future in that regard is still uncertain. I have had some better days since that low, however. I am now approaching five weeks in and the broad window for when most transverse myelitis sufferers begin to see relief from pain is between two and 12 weeks--if they are going to have a recovery (and 33%-67% do experience some healing). I'm solidly in the middle of that window, then.

But in the midst of that excruciating pain last week, something popped up that I chose to see as a sign. A sign that I am to work toward reaching those high places again and not let this issue stop me in my tracks, or keep me below the horizon forever.

There was one pair of Merrell women's hiking shoes that I've wanted for this whole last year, to use to reach those high places more readily than I would have in my other options. But hiking shoes are very expensive, and I'm a single mom with a lot of kids and someone always needs shoes or jeans or braces or field trip or retreat fees or something else. So the full retail price tag was just a 100% deterrent, and even though they would pop up as an ad from time to time, I never even clicked on them after the first exploration. I just scrolled past. Until last week.

At the darkest point, the hardest pain, the time when I was watching the clock for the next opportunity to take a prescription opiod painkiller and anti-nausea medicine to get through the hours, those Merrell hiking shoes, in my size, went on sale at REI. Good old REI. I love the store but haven't actually spent money there since I was a single adult with no kids more than two decades ago. But once a member at REI--even if it was two states away and a lifetime ago--always a member at REI. And there were my shoes. On sale. And no small sale either. 70% off retail. My Merrell hikers that I'd been wanting had dropped down into the range I might find for my young teen's shoes at Target.

I really didn't think much about this purchasing decision. I know. I'm an intuitive, not a senser. Everything MEANS something. So I just acted on it. I ordered them. I took it as a sign and a motivator, something to work toward: You WILL reach those high places. You will walk with sure feet again. This is going to be the reminder of that goal, and it's being offered to you at bargain basement prices! If that's not testing of the spirits for a money-saving-mom with dreams, I don't know what is.

The shoes were a tangible representation of my goal to get better, to heal, to regain solid mobility and enough freedom from pain to function in places of joy after challenge.

I bought the shoes. They came today. I will put them out in view instead of in the closet to wait, and I will think about reaching those high places.

Habakkuk 3:19 is on my mind as I do this. For a very long time, it has been one of my favorite verses to cling to, to return to, to hold on to, to let change me.

God, the Lord, is my strength;
He makes my feet like the deer's;
He makes me tread on my high places.

I see double meanings in this verse, especially as it comes out of the Prophets and to our ears, our lives. My ears. My life.

I live in the mountains. High places here are good things. Long-range vistas. Breathtaking imagery. Wide open spaces. Lush vegetation. Freeing, return-to-Eden-like stuff. I have no doubt that to the deer, and to Habakkuk, there are similar parallels of beauty, freedom, GLORY associated with high places.

But not all high places are set apart by us for God's glory. In the Old Testament, the high places were often sites of idol worship. And oh, don't I have my own idols set in high places? Isn't even my own self-sufficiency one of those idols I set in a high place? Do I like to admit I am down, in need, injured, removed or limited in service? I do not. I admit it. Pride, my own superficial definition of myself, the health and active life and "It's REBECCA; she's always on the go" labels are things I thrive on. I put these images on altars in the high places of my life.

But look. Look at what God, the Lord is: HE is my strength. Not my shrines to my mobility and activity and service and efficiency. HE is my strength. And what does he do with those places of idolatry for me? He MAKES ME TREAD ON THEM.

I love this idea that he causes me to stamp out, crush (like he will do, has done, to our ultimate enemy) these fixations of my own. Anything that will take from him his glory in my life, he will remove from me, because he loves me. Because I am his. I can have no other master; no other lover of my soul. So he will cause me to tread on my high places of idolatry that put any semblance of my own strength in view of his work in me, for me. So he and I can have the closeness we're supposed to have, with none of my idols in the way.

Because he loves me.

But because he loves, because HE LOVES ME, he will give me back even higher places, and because he is my strength, he will strengthen my feet. LIKE THE DEER, who traipses cliff and cleft with tiny, sure feet to reach those upper limits. Sure-footedness feels far from me right now. But HE is my strength. It is not out of reach. And when I do reach it again, it won't be the Merrell shoes, but the healing of my Creator and my Savior who gets me there.

I believe it.
I believe he will make me tread (as in trample) the wrong high places and then set me surely to tread (as in walk securely and confidently) the ultimate, glorious, triumphant high places too. And I believe it will be both spiritual and physical. I will see the goodness of the Lord in the land of the living--and that land may just include Bearwallow Mountain and Mt. Pisgah and Little Pisgah and Mitchell and Craggy Pinnacle again. So be it. I'm all for it.

In the meantime, I am seeing some improvement, as I mentioned above. Pain is far less severe. This morning, I took my last of the largest doses of prednisone. I do think it is helping, and I will continue on a 25% smaller dose for the next several weeks. I'm glad to take the dosage down. Prednisone has side effects and I've had several, with nausea and vomiting being the worst, but also bloating, facial swelling, some hair loss, and 2:00am sleeplessness with the munchies involved. It can also cause an increase in blood sugar, so my diet has to be low-carb and carefully monitored. But as long as it is working, I will follow my instructions. The last two days, I have had discomfort but not what I would call intense nerve pain, like it has been. This is a tremendous blessing and makes me hope with some reason behind it that perhaps there is actual healing and not just pain management at play here. (Feel free to pray for my Schwann cells by name. Those guys are on call to make a big difference in my healing, and as my brother says, "Demo day is over. Time to start the rebuilding." Schwann cells are fascinating. They do different duties and miraculously, by their Creator's hand, know when to change jobs. I literally do pray for my Schwann cells.) I can only trust in the dark right now that something good is happening. My feet remain numb, prickly, unstable, but less painful. I think my left leg is less numb. A repeat MRI on or about March 11 should show whether the lesions are less inflamed and stable. We hope to see no new lesions in that scan, and less inflammation than there was in the first one.

But also in the meantime, I am beginning to learn to come down from my pride's high place and ask for the help I need. I need a more stable walkway into my house. This is the current walkway to the back door. It is a single-file line of pavers spaced far apart and uneven with large, loose gravel scattered between. The gravel easily gets kicked up onto the pavers, making even the flat parts rocky soil. I have ordered enough flat pavers and some sand to redo the walk so that it is two pavers wide with no spaces between. A flat surface will make a huge difference for a person who can't feel the bottoms of her feet! As it is, I have stumbled too many times to count--and it's worse if I am carrying something that blocks a clear view of my feet while I'm walking. It's a humbling feeling--always looking down and not up and out into the world, and still being unstable! My good man has offered to help replace the walk on Saturday morning. My good friend Jordan says he thinks it's highly possibly he can come around to help as well. I plan to ask my church if maybe one or two other men with shovels, a level, GLOVES (by all means, GLOVES), and a servant's heart would help as well. It's a little under 60 square feet, when all is done (2' wide by about 27 feet long), and I think 3-4 guys could probably make quick work of the walk--which would be a relief.

Finally, in that area of humility, I will say that I have been blessed, relieved, helped, and delighted with the meal train that my dear Ashley set up for us, and for every person who has so lovingly created these beautiful, nourishing, and satisfying meals. I really didn't know how much a meal train could benefit, but under these circumstances it has been a life saver. It is still going on at a rate of 2-3 meals per week, and I am humbly asking that if it is possible to keep it going until right after my 3/11 checkup and MRI, it would bless us still. Self-sufficiency can take its rightful place for a time. Standing on my feet at dinner time HURTS, and I really can't even yet imagine navigating a grocery store for a big shopping trip yet. I can get in and out for fill-ins for breakfasts and lunches, but I just don't think I can yet put in the time for a full, family-sized grocery trip yet. Soon, though. Soon.

So that is my humble but hopefilled update.
And these are my new hiking shoes.

I wish I could tell you how they feel. I can't, because I can't feel my feet. But maybe that too will come one day soon. They'll still serve as an inspiration to keep hope and work hard and obey instructions and BE STILL ENOUGH AT TIMES TO KNOW THAT HE IS GOD AND I AM NOT. And I'll post pics again when I wear them to tread on some more high places. Or maybe you'll come along.

The Surprise Diagnosis: Transverse Myelitis

This is going to be an informational blog post, just to help get an update out there in one attempt, rather than rehashing the story over and over.

This won't be much of a reflective post. I'm not far enough along in this journey yet to even begin to process what it might mean, how it might work for good. This is a "just the facts" post for those of you who have been so kind and thoughtful to ask into my life over the incidents of the last few weeks. (Update: I've begun a bit of that reflection plus seeking and accepting inspiration to focus on healing since writing this. You can find that post here. )

So here goes. PLEASE NOTE: I am going to talk specifically about physical symptoms.  Some of those reach into the pelvic area. If these kinds of details make you uncomfortable, you might want to skim lightly and/or skip bits of this post. But I am not going to edit out important details because others suffering similar rare conditions might need to know everything that is going on, to compare for their own health.

Absolutely out of nowhere, in January, I went from being active and healthy to exhibiting a series of strange and disruptive health symptoms. I am going to start at what seems to me to be the beginning, though I am also compelled to remember that "correlation does not equal causation." What I note as the starting point may simply be coincidence, and we may never actually know with certainty what caused my condition.

I have been diagnosed with transverse myelitis, a rare and incurable (but highly variable) condition that attacks the nerve cell covering called myelin in the spinal cord. There are other forms of myelitis or demylineating diseases, some with known causes. Polio, for instance, is a type of myelitis. I do not have polio. Multiple sclerosis is a type of myelitis. Due to the acute nature of the onset of my lesions, my condition is not thought to be multiple sclerosis at this time, but it is not 100% ruled out. Only the passing of much time will be able to unequivocably rule out MS, but it looks unlikely.

The first health condition of note occurred on Sunday, January 13, 2019. It gets noted in this story because it was an unusual event and the doctors I have seen at the hospital (both neurologists and infectious disease doctors) took careful note of this event, documented it, but could not say that it was the initial cause.

On that cold evening, I had just assembled a decorative firewood rack for my mud room. I was filling it with firewood from outside, planning to have wood dry and available inside for numerous cozy fires over the next few winter days. I failed to put on gloves, which, in hindsight, was quite foolish and careless of me. I would do that differently if it was possible to turn back the clock. But here we are now...

After a few armloads, I remember reaching down for a log with my right hand. My hand went under the log and I did not see what it came in contact with, but I felt a single brief, sharp sting on the first joint of my middle finger--the spot where your pencil rests when you're handwriting something. It wasn't even severe enough to make me put down the log right away. I brought it inside, set it in the rack, and then examined my finger. The pain had already stopped. I thought I had gotten a splinter, but nothing was visible except a single, tiny, barely pink dot. It didn't hurt immediately, and I thought no more about it that night.

But the next morning, Monday, January 14, upon waking, the spot had turned into a prominent, raised, thick-skinned, hard blister. It was about 2 mm in diameter. The top of the blister was white but it wasn't filled with pus. The white was simply the thick, raised skin with clear fluid under it. It was quite sore at this point. The white blister had a small dark red ring around it. The ring was at most about 2mm additional encircling the blister. It was not yet raised or puffy. Over the course of the day, that ring spread wider and began to swell and thicken, like a raised pad of flesh surrounding the blister. It turned darker red--not quite purple but burgundy. The radius of the swollen pad reached about 5mm in any direction around the blister and a thickness of about 3mm elevation above typical skin level. The blister opened. Clear fluid, like water, drained immediately. It did not continue to ooze. There was no pus. The skin seemed to close back up and stayed white for a time. The interior of the blister was quite sore--too sore to touch. Pressure of any kind drew an immediate reaction to make it stop.

On Tuesday at work, I found I was very uncomfortable. My chair was uncomfortable. My back was uncomfortable. I was fidgety. My neck gradually grew slightly stiff. I began to get chills. I recognized this as a fever coming on, causing chills, body aches, general malaise and discomfort. I took my temperature after work and it was close to 100 degrees. It continued to rise gradually, reaching 103 by Wednesday, January 16. I made an appointment to see my general practitioner, suspecting influenza, even though I did have a flu shot last fall. But I also wondered if the sting/bite/splinter could be related. I showed a picture to my boyfriend, who suggested it could be some type of spider bite and perhaps it was causing the reaction. I am mildly allergic to wasp stings, but I've been stung only once in my life. The reaction was extensive skin-surface level swelling that created a raised pad of flesh almost 7 inches long and 4 inches wide around my upper arm and to the elbow that lasted six weeks. I had no nerve issues or breathing issues from that wasp sting then, but was told it was possible that reactions could get worse or change with repeated exposure to insect toxins.

The doctor looked at both the wound on my finger and my other symptoms. He felt they were unrelated. He suspected I had pricked my finger on the wood and introduced some earthborn infection that was limited to a skin infection, but wanted to treat it with an antibiotic. He did an influenza test for the fever and body aches, which now had added headache to the list of symptoms. The flu test came back negative. He still presumed that I had some type of virus that was flu-like and that I would develop a respiratory illness over the next day or two. He prescribed rest and fluids and over the counter medication for that illness when it did show up. But it didn't.

I started the antibiotic (a sulfameth something or other) on the evening of January 16. By the end of the day on January 17, I began to detect the symptoms women often get when on a strong antibiotic, suggesting that a candida yeast imbalance was beginning. I ate whole yogurt and took a probiotic supplement but by Friday the 18th, I was in true pain that felt like a yeast infection. I emailed my doctor again, and he wired in a prescription for two doses (a week apart) of fluconazole antifungal. I took the first dose that day.

On Friday evening, another new symptom emerged: urinary retention. Late in the evening, I had the strong urge to urinate but was unable to get the urine to let down for almost 20 minutes of frustrated trying. I thought it was probably just a condition of swelling and irritation from the fungal infection, and was relieved when it finally did happen. But that wasn't the end of it. Even as the pain and irritation from the yeast subsided, urine release continued to be difficult for the next several days. Sometimes it would take minutes--5 to 7 minutes was normal--to concentrate, relax, run water, breathe deeply, and eventually be able to go. But on Monday morning, it got worse. It took a full 30 minutes and involved getting into the shower to let hot water provide a muscle-relaxing massage before I could go. I was getting scared now.

Additionally, over the weekend, I developed another short-term symptom. My wrists, palms, fingers, ankles, arches, and toes all suddenly took on elements of what I think arthritis must be like. I've never had arthritis, so I am speculating, but hands and feet both became stiff, tight, sore, and painful. It was difficult to stretch or bend digits. I wanted to rub and rub and rub my hands and feet to try to relieve the discomfort. It lasted 36 hours and then disappeared as suddenly as it had come on. All day Saturday the 19th and half of Sunday the 20th, and then I was back to normal in that regard.

Still, no respiratory illness had shown up from the suspected virus of the days before.

The wound on my finger began to show minimal signs of tissue necrosis, but no more than one gets from a normal blister achieved from hard work. The top layer of white skin simply died and peeled off, leaving a small crater in the still-raised fleshy pad. It was too sore to touch, like raw new skin. The peeled spot was about 5mm in diameter and its center had a dark red spot about 2mm in diameter, darker than the surrounding swelling. It remained open for more than a week and then gradually began to scab over. Today, February 18, there is still a red tone to the skin there but there is no raised matter. The scab had dried and come off and the skin is healed. Pressure on the spot does give a slight sensation of a pain center still but it is not disruptive.

I continued to monitor (and worry a bit) the urinary retention issue from Monday to Wednesday but it did get gradually better. Urination still took effort and concentration but I was able to go and didn't need to catheterize, so I didn't seek any medical help at that time. But on Wednesday, January 23, another new symptom arose. When I woke that morning, the first three toes and the ball of my left foot were asleep--in pins and needles. Very obvious, pronounced, prickly pins and needles.

I got out of bed and tried putting pressure on the foot. That segment shot pain through it. I waited for it to wake up, expecting circulation to flow with gravity and pressure and for it to right itself, but it never did. To this day, that foot has not yet "woken up." Over the course of the day, the prickles spread to all my toes and the full underside of my foot including arch and heel. The prickles spread to the top of the foot that evening. On Thursday, a general numbness began creeping up my left leg. By Friday, it had reached my pelvic area, left side.

Friday was the wedding of a couple of dear friends. I was determined to dance at their wedding and did so. I'm proud to say I did not fall down, and there was really no shame at my clunky dancing either because I never made any suggestions to be good at dancing--just that I would do it. But I was aware the entire time that only one foot/leg was in that game. I had no idea why I was experiencing this, but my left leg simply felt numb and dead. I could move it. I could put pressure on it. It would stay in place and hold me up. But the bottom of my foot was in intense pins and needles pain and the rest of the leg felt heavy and numb to the touch--as if I'd had a too-strong epidural that took on only one side of my body. I faked my way through the evening and had a great time, but I was worried.

I told my boyfriend about the growing numbness and we speculated that I had pinched a nerve. Maybe it was sciatica. I didn't have back pain though, so it wasn't a spot-on fit. But I made an appointment with my chiropractor for Monday, January 28. My chiropractor is very practical about joint adjustments. For the last 18 years, I have been to see him a few times a year just to keep my spine in good alignment. If something is pinching a nerve, he can almost always relieve that in one session and send me on my way.

The chiropractor found a slight misalignment in my pelvis (just a slight rotation; it's common in active women) and made an adjustment to that. We both hoped that would solve the problem, and that evening, I did think that I could feel more sensation in my upper thigh and one segment of my foot. It didn't last, though, and now I am not sure if that was just a fluctuation in symptoms or a "wishful thinking response."

I emailed my doctor on Tuesday to tell him about the growing numbness. He suggested I give it a day or two and come in if it didn't resolve. It didn't. I made a second appointment with the chiropractor for Wednesday, January 30. He did not find misalignments and was puzzled by the symptoms. The lack of back pain suggested to him that my situation was not likely to be a pinched nerve or herniated disc. He saw no signs of sciatica. He said he believed my condition was something medical beyond frame alignment and that I should return to my doctor for more advice.

I made an appointment with my doctor for Friday, February 1.

After recounting all the details about urine retention and the extent of the pain from the jangling nerves (which by this time had moved far beyond discomfort and into real disruptive pain, alternating between sharp stabbing pins and a sensation of debilitating frostbite in my foot), my doctor truly paid attention. He told me me feared a herniated disc and wanted me to go immediately, nonstop, to the Emergency Department at the hospital. He said he would call ahead to tell them I was coming and he wanted me to get an MRI on my spine right away. He told me to expect to be admitted and to keep all options open. Surgery might not be out of the question.

I reported to the ER at about 11:15am on Friday, February 1st and spent the entire day there. It took hours to get in for the MRI, and the initial MRI that was ordered was not actually for the needed area. The ER doctor orderd a lumbar spine MRI, basic, without contrast dye. It came back clear--and there was some good news in that if even not a solution. I had no herniated disc, no spinal stenosis, no misalignment, no tumor.

The ER doctors changed shifts. A new one had me retell the entire history. He repeated the reflexes tests on my legs and feet (tickles, taps, muscle resistance, pricks) that were done earlier. Everything was responding even though it felt painful and weird. I told him on Friday evening that I thought I might be feeling some prickling in the toes of my right foot now but I was unsure. It wasn't obvious, and it could have just been my head playing tricks on me out of fear. He listened and agreed that I was probably imagining it, but he wasn't condescending either. He was thankful to have the information, even if it wasn't scientific yet. But it would become that way very soon. The new doctor said he wanted to confer with the on-call neurologist to ask about a lumbar puncture to test spinal fluid. He was considering multiple sclerosis and Guillain-Barre syndrome--though he felt my reflexes were too good to be Guillian-Barre. He talked to the neurologist who did not want to do the spinal tap yet, however.

The next step, then, was to order a CT of my brain. There was suspicion that perhaps I had had a minor stroke, causing some level of neurological damage to my left side--or perhaps that there might be a brain tumor affecting the nerves on that side.

The CT likewise came back clear. No evidence of stroke, brain tumor, or tangled blood vessels. Blood tests were next. Basic tests showed no sign of heart attack or any obvious active infection. The ER doctor and neurologist (whom I did not meet but got reports from through the ER doctor) said infectious disease was also being looped in. More indepth blood tests were ordered. Results would take hours to weeks to compile, I was told. No lumbar puncture was ordered.

I was released from the ER around 9:30 or 10 that night without a diagnosis. I was told that the outpatient neurology would set up an appointment with me on Monday morning for more study, and that if I had not heard from them by 10:00am, I was to call to set the appointment myself.

On Saturday, the prickles began in my right foot in earnest. By Sunday, the right foot was tingly with pain almost as severely as the left foot, but the numbness did not progress up my right leg. It remained in the sole and toes of the foot, with the sharp sensation and not the dull, numbness.

I contacted my doctor again on Monday and told him it was still progressing. I made another appointment to go in to see him on Tuesday, February 5. I did not hear from outpatient neurology, and so I called them to get my next appointment. The scheduler was coarse and difficult. He told me I needed a referral to get in with the practice. I told him I thought that was what their neurologist and the ER doctors were talking about on Friday. I told him I had paperwork they had printed for me with instructions, that phone number, a plan. He seemed exceedingly annoyed and put me on hold while he "went to try to figure this out." When he returned, he told me they had a very busy practice and could not just take on new patients with a phone call, but that he could find one neurologist that he could work me in with in late April. I took the appointment with great discouragement.

At my doctor's appointment on Tuesday, my general practitioner said he was not happy with the April delay. He called the neurology office and left a message. He asked me to wait in the office there for a response because he thought my situation required some urgency. It took about an hour for a doctor from the neurology practice to call back, but she suggested that he set up a direct admission to the hospital for me for that same day, so that I could get back in for full analysis there without having to come to the practice. So I went home, got my kids home from school and fed, packed a bag for two nights in the hospital (I was thinking optimistically) and went to check myself in.

I was told to expect another MRI of a different section of my spine and a lumbar puncture over the next 18 hours, and I received both, plus an additional MRI of my brain. Both MRIs were done using contrast dye to "light up" any areas of lesions or inflammation. The MRIs were easy. The lumbar puncture was hard. Every single staff member at the hospital, from nurses to aids to transport staff to lab techs to whomever it was that put that spike in my spine were wonderful: communicative, compassionate, concerned. I cannot complain about the care I received while going through this. But answers are still hard to come by.

The thoracic MRI with contrast dye showed the problem. 5-6 new lesions, all about equally inflamed, suggesting they are the same age, on a section of my spinal cord. The lesions reveal that something has caused the fatty, protective myelin sheath on the nerves to deteriorate. An uncovered nerve goes haywire, sending false signals of discomfort, pain, sensation. The lesions on my spinal cord occur on both sides--the transmitting and the receiving side of the nerve fibers. Hence the name "transverse" myelitis. (Mayo Clinic: Transverse Myelitis) The brain MRI was presumed to be clear, however the neurologist reporting back to me said there was one tiny spot on it that could be a lesion or "could be a bit of fluff on the image," she said. It was too small to be taken seriously enough to re-run the MRI but will be checked in the next followup MRI in March.

Both the neurologist and the infectious disease doctors said they would keep looking for an actual cause of the lesions, but both agreed that such a cause may never be found. In many cases, transverse myelitis is an autoimmune response that hangs on and attacks the body AFTER the body has fought off some real threat. It seems to happen randomly.

I was put on intravenous steroids daily while in the hospital to try to reduce the inflammation and calm the activity around the lesions so that hopefully they will begin to heal on their own. While there is no cure for myelitis like this, about 1/3 of patients with it will see healing and restoration of the myelin covering of their nerve cells. Another third will receive partial healing but may be left with some odd pains or sensations or limitation in function. Yet another third see no improvement at all. I am told that improvement usually takes place between 2 and 12 weeks of onset of symtoms. I am on day 26 right now since the first sign of pins and needles. I do not yet have improvement that I can point to as progressive or obvious. Pain comes and goes but is present every day. It is worse in the afternoon and evening.

I stayed in the hospital for a week and was released to home on Monday, February 11 with prescriptions to continue the high-dose steroid orally, and some other medications for nerve control and pain management. Out of fear of becoming dependent, I don't think I have been taking enough of the pain management medication. Last night, I hit a real low with intense pain and a sense of emotional fatigue that I may not be able to endure under it. I took more medication and got some rest. Today, I think I can make it through today.

I've been advised to follow a nutrient dense diet to give my body what it needs to rebuild the myelin if it becomes ready to do so. I've been advised to keep my diet very low carb too because the high dose prednisone can prevent the body from processing blood sugar correctly, and a carb-centric diet while on the steroid can mimic diabetes. We definitely don't want that. I was told to supplement my diet with high quality Omega 3 fish oil, vitamin D3, vitamin B12, good quality collagen, green tea, turmeric, folate, avocado, spinach, kale, olives, blueberries (low on the glycemic chart but loaded with antioxidants), salmon, tuna, whole eggs, nuts. I am following all the instructions. I want to get well.

Today I have a slight burning sensation in my spine in the thoracic region. I do not know what this means. It could be simply muscle fatigue from compensating differently for a "dead" leg and foot. The body will adjust to still do what it needs to do, even if that means moving in new ways that aren't exactly natural or ideal.

There's a whole lot of "hurry up and wait" in this scenario. Wait for the steroids to help the inflammation. Wait for the next MRI (which will be on March 11) to see if inflammation is down and hopefully--NO NEW LESIONS ARE FORMING.

If the steroid therapy does not help--or doesn't help enough--there is a possibility of doing a blood plasma replacement. In this case, my blood plasma would be removed and replaced with much donor plasma. The idea behind this is to remove the aggressive autoimmune antibodies my body made--and which might still be attacking me--with antibody-free plasma, and hope for a reset. I am open to that therapy and will welcome it if that is what needs to be done.

I have beautiful friends in the Body of Christ who are taking care of me. Meals are coming about every 3 days--generous meals--and this helps so much as being on my feet to cook in the evening is the most painful time of day. Prayers are being poured out. Offers to help with groceries and visits and anything needed are constantly on the table. I am thankful. I need my Tribe.

I don't yet know how I actually FEEL about all of this. I'm not asking "Why?" right now. I'm just seeing this truth: "This happened." I want very much to get well and not hurt like this. I want to return to service and I want to enjoy my life, of course, but I can't do much in the way of processing until some more information comes in. So I desire your prayers over me as much as you are willing to give them, and I will update on this blog to reach as many people as possible whenever I have anything relevant to share.

Thank you to all who took the time to read this.

--Rebecca