Exactly eleven years and three months ago, I wrote this:
Welcome to my acquisition-based language teaching journey. Let’s call it Musicuentos. And let’s get started.
Nearly seven hundred posts later, my Musicuentos journey is coming to an end.
I made the decision to end my Musicuentos run last January, a month after I was diagnosed with multiple sclerosis. Many of you who follow me on Twitter or Instagram or have seen me (and my cane) at conferences know this already (and even contributed to my Walk MS team because you’re so amazing!), but if not, it’s time to let you in on another piece of my journey.
When I was 21 years old, I lost a quarter of the vision in my right eye for no apparent reason. I bounced from optometrist to MRI to neuro-ophthalmologist and was eventually told that, by process of elimination, a virus must have caused what’s called “optic neuritis.” I was sent off with the encouragement that almost all people who get optic neuritis experience a full recovery within 6 months, and I was told that if it ever happened again, I should see a neurologist, because it can be an early sign of multiple sclerosis. Honestly, I didn’t give it much more thought other than “what a waste of money on all those tests.”
Over the next 17 years, I did have a couple more times when I sensed a vision change and the optometrist identified another hole in my vision.
Get an MRI,
he said. But then there were pregnancies, including one where I suffered a severe bout of vertigo. The neurologist took one look at my history of optic neuritis and said,
We can’t do anything while you’re pregnant, but after delivery, get an MRI.
But the baby was born and life was hectic and two months later I found out we were pregnant again (yes, for real). Then that baby was born and I called up for the MRI and was told this neurologist couldn’t see female patients anymore (and is currently in prison). Dodged that bullet, I thought, and moved on.
Then I took up running, and pretty much every time I exercised (or got too warm), I got a flashing sunburst in my right eye that lasted until my body would cool down. (Now I know this is called Uhthoff’s phenomenon.)
And then I fell running and slammed into a parked car.
And then I fell running again and banged up my leg on the sidewalk.
I also still felt like my vision was… off. I had 20/15 eyesight but damaged vision, like holes in my sight. Why? The last time I saw my optometrist, I mentioned the optic neuritis and he got more serious with me than I had seen before.
The number of women your age that have optic neuritis as the first presenting symptom of MS is so high,
he said. “You’ve got to get this MRI. There are so many medicines now that can delay progression, but not if you don’t take them.”
Around the same time, my doctor’s office called with an automated message that I was due for a checkup. Fine, I thought, and went in and said, “My optometrist wants me to get this MRI, can you make that happen?” That was the end of November last year. The week after the MRI, a receptionist called and read it to me over the phone:
Demyelination consistent with multiple sclerosis, that’s what it says, so we have this referral to a neurologist who specializes in MS and she can see you Friday because of a cancellation, or if not you’ll have to wait months.
I was reeling. (Do receptionists think about what they’re saying before they read it off to you?)
That Friday I sat in the neurologist’s office with my husband and looked at scans and talked around symptoms and results. Getting an MS diagnosis requires tests that show change over time, so many people take months or years to get a diagnosis, and I felt blown over by what had happened in a week’s time (and at the same time, it had happened over a period of 17 years). I was a little numb as she pointed at the pictures of my brain and said, “And here’s a lesion, and here’s a lesion, and here’s a lesion,” and Joshua counted, about 13 times. Finally I said, “Look, I’m new to this, but I just don’t understand, are you saying that I have MS?” I don’t remember her exact answer but it was something like all the evidence shows that, yes.
The process since diagnosis has been a bizarre mind game. What is the MS and what is normal? My family will even point out to me when they do something off, like putting the wrong thing in the freezer, to remind me that these things happen to everyone.
Still, I spent 17 years passing off symptoms as normal. Symptoms like days I would lie on the couch and tell my husband, “I feel so worn, like my body is fighting a virus, but I’m not sick.”
Symptoms like the most bizarre sensory problem in my legs that makes wearing jeans very uncomfortable, like I’m trapped and can’t escape. (Now I know this is exacerbated by stress and is called the “MS hug” and is why I hate winter. Leggings don’t bother me so much so I have quite a collection of brightly patterned Lula Roe leggings.)
I’d be in the middle of a conference presentation and forget what I was talking about. I’d be in the middle of playing the piano for a church service and forget how to play a D chord.
I’d miss an appointment or meeting because I’d forgotten it – not like you forget to go to a meeting you’d scheduled, but like I had absolutely no memory of ever scheduling it in the first place. Not like “Where are my sunglasses,” but like looking at the sunglasses I’ve been wearing for the past six months and wondering whose they are and where they came from.
Talk about terrifying.
I’d see someone at a meeting I have every single week and couldn’t recall her name. I’d get stressed over trying to get my kids in the car and feel like I’d completely lost the ability to speak Spanish. My husband got used to hearing me say,
I feel like I’m going crazy
I feel like people talk about this stuff, but they don’t talk about it at 38.
My kids got used to me saying,
Give me some space
Mami is done with this day, I have nothing left for this day.
And this year, we finally had some start of an explanation of why. (Maybe even of why I can’t lift the left side of my mouth when I smile.)
What is Multiple Sclerosis, anyway?
MS is an autoimmune disease. Essentially, my body is attacking itself. I have the most common kind of MS, relapsing-remitting (RRMS). There are times when, for unknown reasons, the disease “switches on” (relapsing) and my immune system attacks the myelin that protects the nerves in my brain and spinal cord. Depending on where the attack happened, this shows up as problems with vision, numbness somewhere (usually arms or legs), weakness, muscle spasms, trouble with speech, balance problems, etc. Then, it switches off again (remitting). The symptoms may seem to disappear, which is why many people have it for years before they know what is happening. Like me, they think
that was weird
and move on. Usually, though, that myelin is permanently damaged, so the nervous system has to find another way to transmit messages or can’t do it as efficiently, like finding a way around a roadblock. This takes more effort and time, which means that after an attack (flare, or relapse), the incremental damage continues to show up, and over time, the overall level of disability increases.
MS is not fatal, though it probably has shaved about 7 years off my life. Also, depending on which (very respected research) website you look at, I have either a 1 in 3 or 1 in 4 chance of ending up in a wheelchair. So far, my accumulating demyelination has affected me in subtle ways that sometimes feel very big. I recently tweeted that the best way to support me is to treat me the same as I was treated before MS, but the difficult thing is that I realize I actually need to be treated differently. I need some compassionate understanding if I forget something important I was supposed to do with/for you or if I stumble over my words or even stutter (I hate this). I am a different person at 5 p.m. than I was at 7 a.m., especially if it’s been a full day, so I may have to turn down evening invitations or ask you to meet me a little more than halfway (or a lot more). I am also different person in 50 degrees than I am in 90 degrees, so please understand that you may see me on Instagram posting about my February 5K and also using a cane to make it through a Labor Day festival. I may lean on a wall or touch the back of a chair while we talk so I stop swaying. I drop things and even my handwriting is worse thanks to measurable weakness in my right hand (I switched to plastic glasses in my kitchen because I got tired of breaking the glass ones- thanks for that tip Laura :). I try not to drive at night, especially in rain or snow, because my crazy persistence of vision makes streetlights and taillights streak across my vision when I look around.
There are a limited number of things that experts agree help delay disability with MS:
- DMTs, or disease-modifying therapies. These are medicines that don’t usually heal previous damage but prevent further damage. I’ve been taking Tecfidera since February and am very grateful to Biogen who provides this $8,000/month medication to me at no charge as part of their free drug program because my insurance doesn’t cover it.
- Mediterranean diet. I’ve been eating less red meat, more fish, more whole grains, and am still trying to break my sugar habit.
- Vitamins D and B12. Both were low for me and I have to take supplements for them.
- Exercise. Late last winter, I fell at the gym. (Note to people with MS: when the Bootcamp coach brings out the little hurdles, don’t.) I sprained my ankle so badly it still aches sometimes, months later. I fell twice in the 4 months after that, once off a platform at the (different) gym and once off my front porch, and it got to where if I went out for a run I spent the whole time obsessing about every bump in the sidewalk or stick in my way. When am I going to fall again. Will it hurt. Will anyone see me. With every.pounding.step.
So I took the preventative measure of giving up running in the summer heat. If the weather is cooler and I feel good, I still run short distances (with my eyes on every trip risk). I joined a gym where I could be anonymous and no one would ask me to jump over anything. I could use the elliptical and the recumbent bike and still be “normal.”
- Stress reduction. And that brings me to the reason for this post.
I had some tough conversations, with myself and with people I love, about the issue of stress. I had already pared down my life to the things I love: what else was there to cut? But the more I realized that I could be trading years of the ability to walk (or, FYI, to pee normally) for the stress I “loved,” the less I loved it. The more I realized that shaving projects and responsibilities could push me farther and farther into that 2 out of 3 or 3 out of 4 who don’t end up using a wheelchair, the less difficult the decisions became.
Is this goodbye?
First, I quietly ended the consultation portion of Musicuentos and removed any reference to it on the site. I told the group that hosted me in Little Rock in January that they were my last. And I started saying “no” to almost every project opportunity after that. (If you need a crash course in how to say no, I’ve become somewhat of an expert!) I’m honored to be writing the front matter for the print version of the NCSSFL-ACTFL Can Do Statements and wow, what an amazing “capstone” project for me as my last contract opportunity.
I spent one last very stressful spring semester teaching both a college course in linguistics to preservice teachers (so fun! so stressful!) and the two homeschool Spanish classes I’d taught for four years. And then in May, I was done. I left the classroom and don’t know when I will return.
As for conferences, I went to Central States last spring and by 4pm my legs were so tired that I went up to my room and took a hot bath and a nap. I knew I didn’t have a lot of conference stamina left in me. (I’ve wondered for a long time why they didn’t put chairs around grocery stores, in fact – when did grocery shopping get so exhausting?) I used my cane all through ACTFL last month, and that helped me have a lot more stamina, but I still plan to attend no more than one conference a year, usually my state conference and maybe an ACTFL here or there when the geography and finances work out.
If I’m in a new place, walking for a considerable amount of time – which means a festival, an airport, or a conference – you’ll see me walking with a cane. It’s a weird transition for me, because I knew I needed a cane when I was trying to get around on my sprained ankle (and I looked like it). But now, I don’t actually need it to walk – I just need it to stabilize me and to help me go farther than I would otherwise. So if you see me and think,
Well, she doesn’t seem to need a cane,
you’re in good company – this thought is in my head, too. It kept me from using the cane longer than it should have because it’s been difficult for me to get over thinking that people will think I’m doing it for attention. Honestly, there are a lot of MSers on Instagram who seem to make their whole life about MS and go on and on about how “maybe you’re tired but you don’t know MS fatigue” like people with MS have a monopoly on being tired. Then there’s the message “I have 99 problems and all of them are MS” (nope, pretty sure that’s a straight up victim mentality). I hope you won’t find me talking about spoonie life (I had to look this up) or posting dramatic lists of symptoms- just believe me,
the last thing I want attention for is using a cane at 39.
What else am I still doing? I will still score AAPPL tests and participate in their educator panel as I’m able. Professionally you can still find me at Calico Spanish. As I transition to take over managing that company, I’ll continue creating story-based curriculum for young children and blogging tips for that audience. For personal ministry and outreach, my avenue is COFFEE: Community of Friends Focused on Effective English is an ESL program for refugees in the Louisville area and I am the director. I have a post about that scheduled for before the end of the year. Then, you’ll still be able to access 11 years of Musicuentos posts right here (though you won’t be able to comment); it’s just that the only piece that will be updated is the resources page if I release a new resource.
And you know, I leave you in amazing hands. When I started Musicuentos, I don’t know if there was a single blog designed to foster conversation on effective language teaching. Among currently active blogs, I think I even beat out my amiga Martina Bex by a few months. And now you have powerhouse longtime favorites like Laura Sexton, Bethanie Drew, Allison Weinhold, Carrie Toth, and Maris Hawkins. I think of all the music we’ve gotten from Sharon and fantastic offerings that maybe fly a little under the radar like Cynthia and newer blogs from Kristine and Viviana and now even vlogs like those from the very energetic and prolific Sarah Breckley. There’s so much free online help out there, dare I say the conference model is on its way out?
Stay with me…
I also want to help you the way others have helped me, by distilling the wealth of information that’s available. I’ll be doing a monthly newsletter with features like:
- a tech tool summary
- a blog post (from someone else)
- an old Musicuentos post you may have missed
- a resource that seems helpful
- a research report
- a newsworthy item
- a tweet that caught my eye
- a podcast episode you want to prioritize
Musicuentos isn’t part of my job anymore, so there’s no economic motive behind this newsletter. There will be no sponsors or advertising. I plan to keep creating materials for TPT if I have a great idea, and I may post an announcement about it here and there, but otherwise there will be no commercial feel to this newsletter. I just want to keep in touch in a helpful way that’s hopefully manageable for me. If you’d like to join me, click here to sign up.
Through the end of the year, I have a few usual book review posts and a list of top posts (this time, of the whole journey), and then we’re done here, I suppose. I pass the torch to the amazing bloggers mentioned above, and others, and you – yes, you, teacher out there with something to reflect on in public but hesitant to do so. I challenge you to start, and I pass the torch to you.
Musicuentos readers, I love you. This journey has been a blast. You’ve made me laugh, you’ve made me think, you’ve made me grow.