Let’s talk about fear. Ah that wonderful emotion that dictates most of our decisions but we very rarely acknowledge. Fear is interesting because even when we convince ourselves it’s not there, it sneaks in from the shadows at the most unsuspecting moment. This is what happened to me this week after a visit with a new doctor.
I’ve touched upon this in other blog posts but just to summarize, my body has Multiple Sclerosis. If you’re unfamiliar with the disease, my immune system can go into attack mode and destroys the myelin sheath of nerve cells in the brain and spinal column which disrupts communication between the brain and the body. The symptoms vary person to person and moment to moment but can include vision loss, fatigue, impaired coordination and function loss. I have relapsing-remitting MS which means that I have “flare-ups” and then go into remission. These flare-ups come and go at unsuspecting times and sometimes I have years without a full blown episode and sometimes they come more frequently.
I have been feeling great in my body for several years which is why some people in my life have never even heard me mention MS in conversation. I really try not to identify as someone with this horrible disease because I don’t want it to be all consuming and I have learned that the more I focus on it, the more it focuses on me if you feel me. But as I mentioned before, I’ve been struggling with some exaserbations for a few months now which led me to find a new neurologist.
I thought we’d have a nice introductory visit and he’d take a look at me and see how well and able I am and that would be that. Maybe he’d order an MRI since it has been years since they’ve peeked into my brain. What I was not expecting from my visit was what felt like a punch to the gut. You see this well-meaning doctor walked into the room and in his thick Russian accent told me that he fully expected to see me in a wheelchair after looking at my charts and brain scans. I don’t know how (or why for that matter) I didn’t melt into a puddle of tears because that’s exactly what I wanted to do. He told me that based on my prior MRI’s that he would’ve thought the disease would’ve progressed by now to the point where I would’ve lost my ability to walk. Holy shit. WHAT?!? My former neurologist never said I was heading in this direction and I certainly never think this way about myself.
But there it was. The fear that lingers beneath the surface. The knowing that I have a disease that could impair my entire life. That with one new lesion on my spine, I could lose my ability to move my body. My body that I love. My strong, beautiful legs. The legs that have carried me across stages and shuffled their way into yoga studios. My legs that so effortlessly now float into 3 legged dog or support me in warrior 2. It’s my livelihood and my grounding to move this amazing body of mine. I won’t be told by someone I’ve just met that I SHOULD be in a wheelchair. I call bullshit.
So I got in the car and called my husband and fucking lost it. I cried the entire 30 minutes home. I could barely get the words out to tell him what that doctor expected to see when he met me. The fear. There it is. The fear is real.
But you see, my husband offered the most beautiful perspective and thank god I was in a space to truly hear it. He rejoiced when I told him what the doctor said. He told me I had defied the odds and that whatever I’ve been doing over the last 5 or 6 years since my last MRI must be working because not only am I NOT in a wheelchair but I’m a damn warrior. OK he didn’t use those exact words but you catch my drift.
And you know what? He’s right. I’ve done things my own way since the last time they took pictures of my brain. I haven’t subscribed to the doctor’s way of treating my disease and instead have taken a holistic approach. I am certainly never going to rule out needing to go a more traditional route and would never judge anyone who does but for now, I am going to celebrate how strong I am and my plan is to keep proving this doctor and the fear wrong. He doesn’t know me and as a wise friend pointed out, he should’ve been asking me what I’ve done over the past few years to treat myself because clearly it’s working.
I’m going to go in the next couple of weeks to get an updated MRI and I can’t help but think that I’m going to be pleasantly surprised. Maybe I can be the one who sees some reversal in this terrible disease. Maybe I can keep defying odds. Maybe the teacher can become the student. What I know for sure is that I’m going to keep doing things my way.
So here’s the thing. I find myself increasingly tired of the highlight reels. I crave deep connection with others and we only find that by being truly vulnerable and showing each other our humanness. It’s lovely to see everyone’s pictures on social media of fun with friends and moments of pure bliss with our loved ones but I want to know what makes you feel. I want to talk about frustrations and faltering. I want us to truly honor each other’s journeys and not just the outcomes. Let’s open up about our hardships. Maybe that’s dark but so be it. I’m here for the realness.
In that vain, I’d like to talk about my body with you all because it occurred to me that as a fitness professional (it feels douchey to call myself that by the way), that perhaps it can come across like there aren’t physical challenges for me too. Let’s start with the fact that I’m not a fitness buff. Ha! That’s weird, right? I don’t go on ten mile jogs on the weekends or take spin classes for fun. I wish I had the energy for that quite frankly. Becoming a fitness instructor happened naturally since movement has always been a huge part of my life. I grew up spending most of my time in a dance studio and later on that organically morphed into barre and yoga. Moving my body has always been medicine for me. It’s an absolute requirement for me to feel mentally stable-ish. But when I’m not moving, I’m just a human who really enjoys lounging and eating all the foods and I’m also someone who needs to be super vigilant of how I spend the little amount of energy I have.
You see, my body has Multiple Sclerosis. I recently learned to word in that way because it’s such a better narrative than to say that I have it. Because of that, I have to consider the spoon theory on a daily basis. What’s the spoon theory? Read more about that here if you desire but the idea is that I start each day with an allotted number of spoons and each daily activity requires me to cash in spoons. Some days I start off with a boatload of spoons and I feel great and some days I start off with just a few. I’m working every day to not live like someone who has this disease but it’s been front and center recently with the fear of Covid lingering. On top of that, I’ve been fighting a relapse that has been unrelenting since the start of the year that includes cute symptoms like temporary paralysis. I’m not sharing this information with you to get sympathy or even to draw attention to it but rather to show you that I’m human. Some days I teach a class and after I feel like I could conquer the world like I do today and some days I teach a class and I have to allow time for rest.
I’m actively working on becoming one with my dis-ease and honestly feel tremendously grateful for it sometimes. Other times I want to punch it directly in the throat. You see, MS has taught me a ton about caring for myself. It’s taught me to slow down and be kind to my body. It’s also taught me to create major boundaries because stress is a huge trigger for trouble and I have to set limits for myself. That’s damn hard. I want to do all the things. My heart wants to climb mountains and dance until the sun comes up but my body sometimes has other plans. So I listen, I get quiet with myself and I do what I can handle. And on days when I do more than I can handle, I try to tune into the subtle and not so subtle signs that my body sends me to knock it off.
Again, I share this with you because it’s easy to look at other people and wish we had some of what they have. I find myself watching TV and wondering what certain people do to have those levels of energy. I’m jealous of energy. But for all I know, the director yells cut and that actor has to take a nap because they’ve used up their spoons for the day.
So let’s talk about these things. Not for pity or to wallow but to remind each other that we are all imperfectly perfect. We all struggle with loving our bodies even though they are so remarkable and squeezeable. Let’s celebrate our soft tummies because maybe it means we’ve finally given ourselves permission to rest and our strong hearts because it means we’ve seen some shit. Let’s not take those days when we rise with extra spoons for granted and let’s be patient with ourselves when there’s only one spoon in the drawer.
I have a hand-me-down mentality. When I was a child, I got a lot of my clothes from my older cousins. The big bags would be sent home with us after a family gathering and I’d be all excited to open them up and see what surprises waited for me. We didn’t have much money growing up and my parents are practical people so it was either hand-me-downs or the most stylish of KMart layaway items. My Mom and I always joke how torturous layaway was because you’d get all excited “shopping” only to have them take away your purchases and store them in the back room until you were all paid up. It was kind of confusing as a kid but I’ll tell you what, once that pink slip was all paid up, it was like shopping all over again because chances are, you’d forgotten what you had bought. Fast forward and I still think like someone receiving hand-me-downs. In fact, I just had this realization that most of my clothes in my wardrobe are STILL not mine originally. Luckily, I have fashionable friends who have passed things down to me but what the heck?!? Why am I still acting like a broke girl? I don’t even fit in some of those clothes and a lot of them aren’t my style to begin with. What is my style? I don’t know. That’s something to figure out another day. These days it’s anything that’s comfortable. I just want to live without a constant wedgie or underwire of any sort.
Anyway, I was trying to fall asleep last night and it all hit me. I am just sitting around waiting for people to give me their leftovers. This is unacceptable. We can apply this same thinking to other areas of my life. It’s not just my wardrobe, it’s my career, it’s the way I approach finances. I have been thinking for a long time about this deficit mentality but I didn’t go back into my time machine far enough to understand where it comes from.
I have turned into an adult who knows I have the skill set, drive and passion to make it on my own and yet, I keep spinning my wheels waiting for someone to hand me the power.
“You had the power all along, my dear.” -Glinda
Totally, Glinda, totally. I have the power. So instead of sitting here waiting for my next bag of hand-me-downs, I am going to buy my own damn pants. Ok this isn’t really about pants but maybe you’re catching my drift. It’s time for me to step out on my own. So I’m going to do what I should’ve been doing all along. I’m going to take a step forward into building my business. I’m going to put out the content that I’ve been holding back for a long time now. I’m going to step into my power.
So what does this mean? It means I’m going to be offering a membership to my classes and online offerings and continue to work with the wellness community that has started to band together with me over the past few months. I’m also going to offer more services doing something that I love which is working more with fellow movement educators, providing mentoring and continuing education. I’m also going to trust myself enough to know that this has been building inside of me for a long time. I don’t need someone else to pass it along to me. I’ve got this.
It’s been a month since my last blog post and a lot of you have been reaching out to me asking when you’d hear from me again***. I sat down to write last week and my heart wasn’t in it. Frankly, I’ve been trying to deal with my anger and frustration. It’s been upsetting to me to see people out there carrying on as if the virus doesn’t exist while I’m over here taking every precaution. I find myself feeling like a kindergartener and wanting to tattle on my fellow schoolmates who aren’t listening to the teacher. “Mrs. Coyle!!!! Karen is hugging her Mom and you told me I can’t hug my Mom!!!!” I’ve had to take lots of deep breaths and remind myself that I am not the Covid-19 police. All I can do is stay in my lane, protect myself and help to “flatten the curve” and what not. So here I am, staying home, getting my groceries delivered, not going out into the world and feeling grateful as hell to live in a happy home surrounded by all of the things that we could ever need.
Speaking of having everything we need, am I the only one who’s now thinking about all of the things that we don’t really need but would really love to have? My list as of lately has included a hammock (I’m still very committed to this one), a pool, every single planter known to man, expanding my yard to be a full grown farm, painting the shutters, putting in a new front walkway, and replacing the floors in the entire house. It’s an expensive list but we’ve got the time for some serious nesting. Now I just need sponsorship for my visions!
Besides dealing with my anger and my ever-growing list of home improvements, I have been spending a lot of time being extraordinarily grateful and very present. I’ve also gone straight to elderly status over the past couple of months. We spent quite a bit of time following a Scarlet Tanager around our yard the other day, watching it flit from branch to branch and being in total awe of it’s beauty. I don’t think I’ve ever been a bird watcher until now. In fact, I thought the bird was a cardinal for quite a while until we saw it’s black wings. I also like to do what I call my daily “walk-about”, where I walk around our yard seeing what’s grown from the night before and oooh’ing and ahhh’ing over the tulips, budding rose bush and sprouting seedlings in the garden. I mean, have you ever really spent time looking into the center of a tulip? It’s pure magic. My other activities include laughing hysterically at my pups, laughing hysterically with my husband who is still tolerating my daily nonsense and is doing a great job checking me when I think it’s a good idea to build a greenhouse or wanting to buy every plant on the planet. Honestly, I’ve been treasuring this time. Sure, I miss some people and I really wish I could give hugs to my family but I have really been enjoying time without obligations and requirements of my time.
My personal hygiene isn’t what it once was but I honestly give way less F’s than I did a couple of months ago. Sweatpants and messy buns and I have become such close friends and I don’t really know how we’ll be able to be separated after all of this.
So the next time you see me out in the world (which seems like it might be years at this rate), I’ll be the one in sweatpants and a messy bun holding a tulip and as many plants in my arms as I can, trying to figure out how to have a normal conversation and missing the birds in my yard.
***this detail has been added for dramatic flare and to boost my self confidence.
So the first step is admitting you have a problem, right? Well here’s (one of) mine. Social media and the news have been messing things up for me lately. I have become so consumed with both that I’ve noticed it’s started to have a very negative effect on my mental health. I’ve also been using it as a coping strategy to numb certain feelings while simultaneously working myself into a rage. Rather than sit with my feelings, I’ve been glued to my phone. Instead of diving into my fear and anxiety and sifting through it, I read news articles that create more fear and anxiety. So I’ll just be over treating myself like a child and limiting my screen time and creating rules and boundaries about how I consume.
I had a complete meltdown last week. I’m talking yelling, sobbing, boogers flying, curse words spewing meltdown. You see, I have an “underlying health condition”. We don’t need to get into specifics because honestly it’s not important and I don’t believe in what I call “feeding the beast” which gives my disease more attention than it deserves. This is a topic for another day but I instead choose to focus on my good health and good looks. Haha! Just kidding! But seriously, the more attention I give it, the more I feel it and that just doesn’t work for me. So until last week I hadn’t seen my condition mentioned in any articles about COVID-19 that would bring me alarm and I was hopeful that since my immune system overreacts that this would actually be a benefit for me. Silver lining to an auto-immune disease? Sure, I’ll take it!
Well guess what? If you search enough, you will eventually find what you’re looking for. So sure enough, I scroll through an article and I see my condition listed. SON OF A! Coupled with the fact that it was the day after Easter and I was so frightened by the amount of photos I saw of people not social distancing for the holiday and I was beside myself. I felt like people had given up. That they were no longer caring for themselves and their neighbors and were putting everyone at risk. Did I wish to be sharing a meal with my family for Easter? You betcha! Do I want a giant hug from my nieces right now? Absolutely. But I’m not going to because I care deeply about myself and my community and staying apart is what we need to do. So anyway, that’s when the boogers started flying. When it all amounted to too much. When I started to feel that people not following the rules were putting my health at risk. Because to me it’s simple. I stay at home for you and you stay at home for me.
And then there’s the posts I’ve been seeing about separatism online. It might seem like funny, cute things you’re sharing but maybe you can ask yourself if it’s creating more divide between us when we need togetherness more than ever. I’ve seen a few posts recently from moms with young kids. One insinuating that people without children are just casually sitting home learning new hobbies and one that asks those of us without kids to check on those who do. And yes, I will check in on you because I can’t imagine how hard it is to be without your network of support and to be caring for your family 24 hours a day without a break. But you know what? I’ll also be checking in on my friends without children and maybe those of us who wish we were safe at home with little ones but aren’t blessed with them. And I’ll check in on my friends who live alone cause that must be a whole different kind of struggle. And I’ll make sure my friends who are unemployed, struggling small business owners, people with underlying health issues, those who are pregnant, friends who are worrying about how they’ll pay their mortgage or about the future of their careers, people who are struggling with learning new technology or working from home. I’ll check in with you all because you know what? This shit is hard. It’s hard for all of us so let’s think twice before we add more separation. And let’s think about our privilege here. It’s a privilege to have children, it’s a blessing to have a home full of food and warmth. What a gift to have family and friends to miss and that you’re longing to hold. There are lots of people out there without any of that. And there are healthcare workers sleeping in their garages or not coming home for fear of infecting their families. There are people getting paid minimum wage and putting their health on the line every.single.day. So what is my point if you’re still reading? That there is no one who is untouched by this so the best we can do is to support each other in any way that we can. Let’s reach out, let’s check in, let’s speak, post and make our decisions out of love. And yes, it is an act of love for you to STAY SAFE AT HOME.
When all this quarantine business started, I felt paralyzed. I didn’t know where to go or how to process my feelings so I just sat with it. Let’s be honest, a lot of the time I still feel that way. In recent days, I’ve realized that movement has been key for me. I move and I feel better, it’s as simple as that. So I decided to venture out and offer some virtual barre classes. I asked for $10 donations from folks if they could spare it. I told them not to pay if they or someone in their household is under or unemployed right now due to this godforsaken virus. I figured it was a nice opportunity for me to move my body, make a few extra bucks and connect to the incredible people in my world.
And then the payments started rolling in...one for $30, $25, $60, $15. So many members of my beautiful community contributed not just to me but to help support those around us who can’t swing the extra money for a class right now. It might not seem like a big gesture but to me, it’s everything. And then there was a sweet surprise left on our doorstep a couple of days ago. Some lovely humans from AG Fitness (where I’ve only worked for a few months by the way) all got together to send us instructors a gift card to Laney and Lu...one of my absolute favorite spots. I am still absolutely blown away. I don’t know if I can accurately describe how full my heart is.
A couple of weeks ago, like so many of us, my world got turned upside down when the businesses I work for and love were forced to close their doors. I myself am my own little small business as a fitness instructor and I immediately started worrying about the future, finances, and what might become of the industry that I’ve dedicated so much of my life and energy to. And just when I began to worry, you all showed up. Without saying a word, you reminded me that I have your support. With a small gesture, a click of a button, you gave me back my motivation. With your kindness, I know that we’ll all get through this together. So thank you.
In a time where we’re afraid of being too close to each other, I feel in some ways closer than ever to you all. Our love and kindness knows no bounds. Let’s remember that even in the darkest times, we can still support our friends and neighbors.
So let’s think now more than ever about where our money is going. Before we spend our cash at a big grocery chain, maybe we consider buying from the local farmer who is busting their hump right now to get fresh food to you. Or think about your favorite massage therapist or hair stylist and grab a gift card for yourself or a friend to use when we can get back out in the world. If you want takeout, let’s rally round those mom and pop places like Laney and Lu. When all of this is over, we want our favorite spots and small businesses to open their doors and welcome us back in. Trust me that Target and Walmart will still be standing at the end of this but how about all of those other people in your community who are completely adjusting their business models to continue to support us? Let’s wrap them up and show them how much we admire them and need them in our world.
So thank you for supporting me. I can only hope to repay it in the ways that I know how (mainly through cheesy jokes and funny faces). Love you, friends.
If you had told me I’d be titling a piece of my writing “Corona Diaries” years ago, I would’ve thought it would have been the tale of a summer night spent with light beer and limes. Perhaps it would’ve been a day on the sand with good friends laughing and sharing stories. But alas, it’s just me cleansing my soul because a virus has swept the world, leaving us all to second guess all that we ever knew.
I haven’t felt inspired to do anything until I started typing today. Sharing my feelings on social media feels small to me, laughing about it or trying to “stay positive” is absolutely infuriating. So I am left with myself, riding the waves of my feelings from one moment to the next. I find myself wavering between gratitude for quiet and stillness and absolutely debilitating fear. When I’m in the moment, I can settle myself but as soon as my brain starts going towards thoughts of the future, I start to freak. What will happen to my family? What if someone I love needs help but I can’t get to them because of exposure risks? What if the businesses I love and work for never reopen? What if the world as we know it never looks the same again? Well, I hope the world doesn’t go back to the way it was. I hope that at the end of this we find that our “old ways” weren’t working for us. I hope we never take our time together for granted again. I hope we all stay slowed. I hope when we hug our loved ones again, we remember that our connections are truly the only thing that matters.
So I’m not focused on politics or running workshops or coming up with new sequences for my virtual classes. I’m focused on checking in with the people that I love. I’m focused on checking in with myself. I’m snuggling my husband and my pups harder than I ever have and breathing in the fresh air outside with more gratitude than I’ve ever felt. I’ve been talking to the trees and rocks more. I’ve been asking my Dad up above (or all around or wherever he is) for his help. I’ve been looking for signs. I’ve shed a lot of tears and I know there will be many, many more. I’ve been burning sage like it’s my job. I’m not worried about money (there’s a first for everything). I’m worried about living. So each night as I try to fall asleep, I will keep my mantra of “we are safe and healthy” going. I will not be staying positive so please don’t try to come at me with that right now. I know we’re all coping in our own ways but for me, I need to be sad and frustrated and so full of love I can barely stand it. It’s where I’m at and I won’t deny myself of it.
I’ll continue to clean the shit out of my already clean house so that I feel some semblance of control. I’ll get on my mat most days because it’s familiar and makes me feel like me and I’ll be graceful with myself when I don’t want to. I’ll keep daydreaming of warmer days when I can get back out into my garden and feel the soil between my fingers. I’ll listen to the trees talk and admire the buds on my rose bush and remind myself that life continues and that nature is still there to guide us. I’ll keep kissing my husband and making up random songs about the irony of wiping down lysol wipes with a lysol wipe and being absolutely astonished that this is the new norm. I’ll laugh when I feel like it and not be quick to wipe my tears away. Now is the time for feeling.
So reach out to me and I’ll reach back. None of us are immune to this. I need you and you need me. Let’s be great friends through this. I love you.