Those of you who know me best know that I have a tendency to lean pretty deeply into the mystic. Yes … even more deeply than the tarot readings and the whole mercury in retrograde thing. I have a strong belief in the interconnectedness of people, places, and things. So deep in fact that it’s barely a “belief”. It just is. Something I don’t often think about and something that I rarely try to explain. It. Just. Is. That vibrational energy that pulls all living things to one another. Some of us notice it. Some of us don’t. Some of us even learn to harness it and use it to help guide the tiny little decisions we make each and every day as well as the big gnarly decisions that shape the course of our lives. (Yes … I admit that sounds an awful lot like “the force” in Star Wars. What can I say? George Lucas nailed it.)
My most recent encounter with this “force” happened a couple of weeks ago when Jay and I were returning from a camping trip in Pemberton. It was an important weekend for us. We had spent most of the summer running FAST on parallel tracks … busily going about our lives with very few opportunities to really connect or to catch our breath. We were moving a million miles an hour right up until the evening before we left … frantically (unconsciously) sprinting towards a finish line of which we were only vaguely aware. Anxiously moving towards an opportunity to hit the reset button and move into fall with a definitive end to our current chapter. It’s a chapter that has included A LOT.
For me it is a chapter that included challenges that required me to take a medical leave from work and adjust to the fact that I will have an autoimmune disease for the rest of my life. It included the death of my aunt – which was sad in of itself but also extra sad because of the tremendous grief I absorbed from my mother as she tried to cope with the loss of the last member of her birth family. It ultimately included leaving a job I had been in for more than 12 years and starting a new one. With all of that as a backdrop, I began summer feeling desperate for lightness, movement, and hope. I dove in with an energy that bordered on fanaticism. Throwing myself into my high paced new job, teaching yoga classes, taking trips for work and fun, spending time with friends, moving to a new apartment, hungrily drinking in all of the sunshine I could find, and exercising exercising exercising. Squeezing as much as I could into every minute of every day and most of the nights. Although it’s what I needed to do to shake off the darkness … the summer is a blur. When I look back at the past 10 weeks, there’s nothing but vague images and vapour trails. It’s all pretty and full of that sparkly stuff that I love, but it’s not solid.
For Jay this past chapter most notably included the death of his mother in late-February and the death of his father just 3 weeks later. On the weekend of our camping trip, his sisters and brothers who live in Calgary were getting together to lay his parents to rest. He couldn’t be there in person so he chose to use the weekend to sprinkle his parents’ ashes in places that reflected who they were to him.
So … that weekend camping trip was about closing a very heavy and tricky chapter in our lives. To do that we knew we needed to get out of our heads. We needed to ground and connect. With each other. With nature. With our surroundings. We knew we need to pause and get present so we could move forward on solid ground. I can’t say we were entirely conscious of all that but we we had a vague sense that we NEEDED it. On many levels.
“Okay. That’s all very interesting but what does any of this have to do with the mystical force you were babbling about at the beginning of this post?,” you may be asking.
I’m almost there. Be patient.
On our way back to the city at the end of the weekend, we paused at one of our favourite places. Porteau Cove. A little stretch of beach along the sea to sky highway where there are train tracks that run between the coast and the road. Jay had decided he would sprinkle some of his father’s ashes there as his dad had spent his entire life working for the railways and it defined who he was. It felt like a perfect spot.
We arrived just as the sun was starting its obvious descent towards the western edge of the world. I let Jay go ahead to collect his thoughts and settle into the moment. As I wandered, I came upon the most giant raven I have ever seen (pictured above). Almost 3 feet tall. No exaggeration (seriously – click HERE so I don’t have to argue with you when I see you next). He was so huge that I was a little nervous around him. But … he kept watching me as I came closer. He was still and calm. Like he had been patiently waiting for me to arrive. I said hello to him (yes out loud because I always talk out loud to ravens and crows) and carried on to be with Jay.
After Jay had sprinkled the ashes in the surreal and heart breaking orange glow of the setting sun, I walked back to the parking lot alone to give Jay some time. The raven was still there. I stared at him and he stared at me. I looked into his older than time itself eyes and said “okay then … what is it that you want to show me?” I swear he nodded his head. He hopped towards the ocean. He kept looking back to see if I was following him. Of course I was. Eventually he paused on a giant boulder so that he was positioned between me and the setting sun. In my mind I heard him ask “do you see? do … you … REALLY … see?” After the weekend we just had, I was feeling pretty good about my focus and clarity. However, ravens know best so I let my eyes rest on the point to which he was directing my attention and I literally said “ah” out loud as everything cracked open. The ocean, the air, the sun. The true beauty and magic of where I was standing really sunk in. I was truly there. Seeing. Being. It was incredible.
As I absorbed it all, the raven watched. When he was satisfied he said “don’t forget” and flew. Over the ocean. Directly towards the sun.
Given that we were there to lay Jay’s parents to rest, I knew the raven’s mission was not simply to get me to see how pretty everything happened to be that night. It was to see EVERYTHING … ALL THE TIME. It was to remind me to be present for all of the moments of my tiny little life. A life that will begin and end in the time it takes the universe to blink. A life that will be filled with moments that string together to create an existence of significance if I do my part. Moments that are harsh and stark and baked with devastation so brutal that they take your breath away. Moments that are complex and layered and confusing. Moments of technicoloured brightness and hope. Moments of beauty. Moments of love. Moments of grief, loss, rage, shame, guilt, fatigue, boredom, terror, and anxiety. Moments in which you feel your heart will literally burst with happiness or anticipation. They all count but only if you take notice and only if you let them integrate with all of the other moments that have already come and gone.
The weekend had been our practice run. We had let ourselves soften into it a little bit at a time. We had spent our nights under the crisp cool stars and our days by raging turquoise rivers and steady glacial lakes, under endless blue skies, and surrounded by trees that have spent more time on this planet than both of us combined. We had hiked into the mountains and breathed deeply. We had felt our lungs expand and had felt the armour we had both been wearing loosen and fall away. We had begun to truly notice our surroundings for the first time in a long time.
However, the raven had waited for me to issue his challenge. He sat in the spot where I was most likely to notice him … that place where the ocean meets the land and sky. He was there to challenge me to never EVER let another summer pass me by without being fully aware of each and every little moment. He was there to remind me to keep my eyes open. Always. To notice the beauty that is all around us in each and every moment. Even in moments of great sadness … even in moments that include saying goodbye to someone we have loved. Because at the end of the day (at the end of our lives) that is what matters. That we have noticed all that we were given. All that we have been so privileged to witness and experience.
So dear raven … challenge accepted. I will meet you there again soon. At that place where the ocean meets the land and sky. I will tell you what I have seen (what I have TRULY SEEN) since the last time we met.
I am 2 months into a brand new job. A big important high profile job that I am super stoked about. A job that allows me to be creative, provide leadership to a sector that I love, make decisions that draw on all of the experience I’ve had over the past 20 years or so, and work with lots of smart caring passionate like-minded people. A job that feels like it was designed specifically for me. Things were going great. The boss of all bosses even went out of her way to tell me that she was impressed with my “executive presence”. BOOM! Amazing right? Truly it was. Until …
I was on a skype meeting with about 60 people from around the province. The presenters started talking about one of my initiatives and asked if I wanted to provide additional detail but … the session was in lecture mode which meant the entire audience was muted. So I typed in the little group chat box (you know the one that’s visible on the screen to everyone who’s on the call?) to ask if they could open my line. They couldn’t figure it out and carried on to say something about my project that wasn’t quite right. Grrrrr. Because it would be virtually impossible for me to be doing just one thing at a time, I was also live messaging with my friend who was on the same call. (Can you guess where this is going?) In frustration, I typed something to my friend. Something that started with “fuck” and ended with “me”. Or I thought I had typed something to my friend that started with “fuck” and ended with “me”. I had meant to type something to my friend. But … when I glanced up at the screen … I saw my words flashing in the group chat box. Nobody else had typed anything so it was just there … all by itself … big black letters on a stark white background. For a moment the whole world stood still. I could feel everyone on the call holding their breath. The presenter paused and stumbled over her words. I mean seriously?!?! Who would type “fuck me” on a work conference call with lots and lots of people??!?!? She must have been more than a little ratted.
I couldn’t believe what had happened. I reached out with my finger and desperately tried to erase the message from the screen. As reality sunk in, all of the blood rushed from my body. I knew I needed to say something. Anything. Quickly. My brain rushed to my fingertips and I almost typed “oh shit”. Fortunately something along that well-traveled neural highway rerouted that message and I managed to instead type “OMG I am soooo sorry.” I spent the next 24 hours trying not to vomit and waiting to be fired. In the end, I reached out personally to anybody I could think of who was on the call. When I checked in, I was relieved to find that people generally found it hilarious and had massive amounts of empathy for what they knew I was going through. (Either that or they didn’t notice because they hadn’t been paying attention.) Many people said they liked me even more because of it. Maybe so but … I’m pretty sure that whole “executive presence” thing has gone out the window.
The thing is that this wasn’t a one-off incident for me. Not a completely out of character lapse of judgement. In fact, these kinds of things happen so often that people who know me best refer to them as “andrea moments” or “going full andrea”. I’ve tried to pretend they are “blonde moments” but truly they are the brilliantly messy and spectacularly high voltage ADD moments for which I have become somewhat famous. Moments when my brain moves at lightening speed and circumnavigates things such as consciousness, ration, discretion, tact, and care for my own happiness, safety, and overall well-being. (In fact … I’m kind of wondering if blogging about my ADD moment is another ADD moment. It’s a mental wormhole.)
So what is Attention Deficit Disorder (ADD) all about anyway? When you think of ADD, you probably think of the 10-year-old boy who can’t sit still, who is constantly disrupting others, and who has a kind of wild look in his eyes. The boy who is barely passing school. The boy who has jumped off the 2nd floor roof of his house, severed his brother’s ear with a homemade javelin, took out his best friend’s front tooth with a bb gun pellet, and burned down a shed with fireworks. The boy who got a bit older and started skipping classes just a bit more often than the other kids, partying just a bit harder than anyone else, bouncing from part-time job to part-time job, and driving a bit faster than his buddies. Maybe he started smoking when he was 11. Maybe he’s dating the hippest bad girl in school. Maybe he sold his mom’s brand new camera for $50 so he could buy beer for his friends. Instead of jumping off the 2nd floor of his house, he’s now cliff diving into shallow pools and long-boarding down steep city hills. He’s hiking in the mountains in the winter with nothing but a sleeping bag and 2 granola bars. He’s disappearing into on-line gaming for so many hours at a time that he misses dinner and then breakfast and then lunch and then dinner again. He’s surfing by himself in stormy weather because that’s when the waves are the most fun. If he’s really lucky, maybe he’s playing rugby to channel some of his energy or writing music to harness some of the creativity that oozes from his body and brain non-stop. When he graduates (if he graduates), he’s likely to take time to travel or work some sort of physical job. He’ll do that until everything starts to settle and he finds his groove. Biochemically and actually.
If that’s the image that comes to your mind, you’re not wrong and you’re not alone. That’s the image most of us come up with. It’s the image of someone we actually know. However, ADD is not just that little boy.
When I was growing up people knew nothing (literally NOTHING) about ADD and ADHD. Even now, it is hardly ever diagnosed in girls. That’s because girls with ADD don’t look a whole lot like that little boy we all know. Our ADD plays out against the backdrop of gender norms that pressure us to be quiet, sit still, be kind, think about others, and leave the heavy lifting to the boys. So … like many other grown-up (ish) girls, my ADD is self-diagnosed … a diagnosis that came after years and years of wondering why I was so flaky and why I did so many dumb-ass things. Things that messed with my self-esteem and influenced various life choices … diverting me from safe predictable paths that probably could have led to very happy endings. Probably. If I wasn’t so flaky and didn’t do so many dumb-ass things.
Before you start to roll your eyes at this whole ADD self-diagnosis (yeah I’m talking to you mom!) … let me tell you that I have some pretty respectable credentials. I have a masters degree in counselling psychology so I’ve studied this kind of stuff from an academic and theoretical vantage point. I’ve also worked in the community living field for 25+ years so I’ve actually delivered and designed services for people with ADD. Plus … you know that little boy I described above? That little guy we all know? Well … I raised him. “He” is a composite of my two stepsons who came into my life when they were 6 and who are now 23. Twin boys. Both officially diagnosed with ADD. Those things “he” did are all real things that me and my little guys lived through together. So yeah … I do actually know what I’m talking about. On top of that, I’ve started to research what ADD looks like for adult women. Turns out that my story is not entirely unique.
I wasn’t disruptive in class. At least not like the little guy above. But … I was a day-dreamer. Constantly looking out the window or doodling in my notebook. One of my teachers suggested that my parents get my hearing tested because she had to repeat herself for me so often that she assumed I might have hearing loss. (As an aside … it’s not true that people with ADD can’t concentrate. In fact, hyper-focus and immersing yourself in something for hours at a time is pretty typical for people with ADD. Books, video games, drawing, journalling, doing puzzles, playing guitar. Anything that lets your brain hone in on one thing and quiet the noise.) I got bored easily and it was physically painful for me to sit still for hours at a time. I couldn’t wait to move and run. I did well in school but it wasn’t without a lot of effort. Creative and theoretical and conceptual stuff came easily for me. But … if I had to memorize anything I was doomed (fuck me!). The only way I got through those kinds of courses was to take meticulous notes (because that kept my brain on task in class) and to rewrite those notes word for word multiple times (until they started to sink in and stick). Sometimes I would stay up all night writing and writing and writing. I’d drag my ass to school with basically no sleep and try to get as many facts as I could onto the page before everything started to fade. My brain wouldn’t hang onto that kind of information for long. As soon as a test was over … my brain would reboot and make room for more entertaining content. Speaking of staying up all night, like many other girls with ADD, I struggled with insomnia. I know I know. You have insomnia too. Nope. You don’t. NOT LIKE THIS. As long as I can remember I’ve had trouble sleeping – the trifecta of insomnia – where it takes hours to fall asleep, you have trouble staying asleep, and you wake up early. Even at the age of 6 or 7, I would be the last one to fall asleep in our house. Every night. I would call out to my parents to turn over album after album after album – Elvis and ABBA mostly through my earliest years. Until eventually they’d have to go to bed and I’d lie there awake with my mind still racing and my body vibrating with energy. The only thing that gave me half a chance at falling asleep even for a few hours was being active. Very active. All the time. Competitive sports saved me. I was always involved in something. Usually many things – skating, basketball, track, volleyball, racquetball, gymnastics. Honestly anything that kept me moving.
But, like that little boy above, I did dangerous things. Often by myself so nobody would try to stop me. Things like climbing the tallest trees in the woods behind our school. Things like putting on one rollerskate and launching myself down the steepest hill in our neighbourhood. And a bit later … things like driving my VW jetta 170 kph on a winding highway. Things like scaling the guard rails of the steep cliffs to get a bit closer to the wild atlantic ocean thrashing hundreds of feet below. It wasn’t just about the adrenaline or the physical challenge or the competition (although admittedly that was part of it). It was also because when I was doing stuff like that, my brain had to concentrate on one thing. Surviving. I liked that feeling of my brain narrowing it’s focus. All of the other mental distractions fell away.
Speaking of dangerous things …
As I got older, there were boys. Boys who liked that I acted before I thought things through. Boys who liked that I had lots of energy and didn’t sleep. Boys who liked that I was a bit flakey and got super lost every time I went somewhere (it made them feel very useful). Boys who could turn off my brain for a while simply by lying down with me in a sunbeam. Boys became my allies and my refuge. I felt more comfortable around them than around girls. By the time I hit university, I knew that they could be counted upon when the pressure of holding it all together got to be way too much … so much that my brain was pure electricity and my body was vibrating with tension ALL THE TIME. If you were paying attention, you would have seen the wild look in my eyes and you would have noticed the constant motion. Literally. Like the iconic image of the trapped wild cat … eyes darting pacing endlessly back and forth in her cage … waiting for the chance to burst free. Boys became my favourite escape. I made some of my best bad decisions with boys in my early 20s … ummmm and 30s and 40s. (We’ll skip over those details to protect the innocent.)
As an adult, I’d like to say I outgrew ADD but that idea of outgrowing it is (in my humble opinion) one of the biggest ADD myths of all. It’s true that there tends to be a bit of a settling that happens, but it doesn’t ever go away. The ADD brain is actually mapped differently than the non-ADD brain and that doesn’t change just because we’re suddenly old enough to drive and vote and drink. It’s just that most of us pick up some strategies and tools along the way. We learn how to manage. In many ways, that little boy we talked about earlier has an advantage. He was diagnosed and has a label to make sense of why he feels different from other people. That will help with his self-esteem. It’s possible that he even had people along the way who were intentionally supporting him to build up his repertoire of coping skills. That will help with his ability to manage and regulate his behaviour. It doesn’t often go down that way for girls. We just cruise into adulthood white-knuckling it all.
How has this played out for me as a grown-up(ish) girl with ADD? Well I continue to struggle with impulsivity (as you’ll remember from my opening story … fuck me). I get mentally and physically restless and start scanning for things (anything) to keep me from feeling bored and will do things like harassing my friends until they have no choice but to come play with me (as you’ll remember from my opening story where I was incessantly messaging my friend who was trying to concentrate on the call). I have trouble focusing and get easily distracted by all the shiny things … even if I’m in the midst of a metaphorical glitter pile my radar is always scanning for something even more glittery. I have a tendency to hyper-focus on myself in relation to others so I’m constantly polling to make sure I’m okay with my people. The good news is that I am a bit more aware than I used to be. My self-diagnosis came as a relief. So much fell into place for me when I was able to give it all a label and I have since been able to develop a few new techniques to help me deal with my trickiest tendencies. The latest addition to my toolbox are the photos above and they are hot off the press.
I love (LOVE LOVE LOVE) my new job and as funny as that little incident may seem, I really was devastated by what I had done. I felt I had jeopardized everything because of those ADD-isms that are managing to keep the party going long after there should have been a last call on some of those behaviours. So … I was VERY MOTIVATED to prevent something like that from happening again. I knew I needed a visual cue that would be right in front of my face to help interrupt my typical “decision-making”. I came up with powerful and personal images for my most common ADD errors. I have printed out each of the pictures above and put them in frames that now sit on my desk right beside my computer. Depending on what’s happening throughout my day, I move certain ones to the front. And … it has been helping.
Regina George (Mean Girls) – My Regina George error involves me assuming that everything is about me … that everyone is thinking about me ALL THE TIME. Haha that’s not quite as narcissistic as it sounds. It’s not usually in the realm of “everybody loves me”. It’s usually in the realm of worrying that something someone has said or done is because of something I’ve said or done (or not said or done). My people are SO IMPORTANT to me. They make me feel safe. So I constantly worry / wonder how they are feeling about me. That’s true in my personal relationships but also in my relationships at work … especially with my boss and my closest colleagues. I need to know they like me and respect me and value my contribution. I move this photo to the front of the line when I catch myself hyper-focusing on what other people are thinking about me.
Scrat (Ice Age) – My Scrat error is pretty straight forward. It’s the classic ADD “act before your brain kicks in” error. It’s the one that led me to type “fuck me” in a group chat box at work. It happens when I don’t pause to take a breath or think. When I just leap in without any consideration of my surroundings or potential consequences. I move this photo to the front of the line when I’m in danger of acting without thinking. It’s now at the front for all group conference calls.
Buttermilk (youtube sensation) – Buttermilk is a baby goat who runs around and annoys his friends just to keep from getting bored. He is fully aware that he’s irritating them but doesn’t care because he wants to have fun ALL THE TIME and knows that his friends love him. He banks on them forgiving him. My Buttermilk error occurs when I do that kind of stuff. I prioritize fun at all costs and quite often pull the people around me into the swirl. In my defence, I do actually work my ass off regularly. This one tends to kick in when I’ve been super focused on something for a long time and I just can’t take it any longer. It usually starts with a mental “fuck it let’s go” and then I’m off buttermilk-the-goating my way to some sort of mental and physical release. Often I’ll go right back to what I was supposed to be doing after I’ve exorcised some of the ADD energy (sometimes leaving my friends lying flat on their backs in my wake). I move this card to the front when I know that I’m feeling antsy and bored (especially if I have to concentrate on something monotonous or something that I don’t see as a priority).
Derek Zoolander (Zoolander) – My Zoolander error is another ADD classic. It’s the one I spoke about earlier … the one that involves constantly scanning for and getting distracted by the shiny things. Derek’s task is to walk down the runway with laser focus. Ignoring the pretty people and the flashing lights. Of all my ADD errors, my Zoolander error is the most pervasive and is the one that has been the impetus for some of my most memorable (questionable?) moments and big life shifts. It’s the one that fuels my gypsy soul. I struggle with it in the day to day and across the trajectory of my life. At work, I’ve been moving this card to the front when I have to get something important done. It reminds me that I need to focus.
Although I’ve been referring to these as “errors”, I have to be honest and say that these are some of my favourite parts of myself. They all have a positive side to them – a side that makes me lean into the bliss of life and see the positive in pretty much every situation. A side that makes me generally optimistic and empathic and fun. A side that gives me energy and a willingness to try new things. A side that lets me get a lot of shit done each and every day. However, I know that they are also some of my most destructive (and self-destructive) tendencies. My goal for the next little while is to try to rein them all in a bit … at least while I’m at work. I’m trying to remember that being present and careful and thoughtful is critical. Especially because this job is so important to me. I’m trying to remember that I can do this … that Regina, Scrat, Buttermilk, and Zoolander will all get to have many moments in the sunshine … that there will eventually be some sort of after-party that I can go to when my work is done.
Oops. Didn’t mean to leave everyone in suspense with my last post. I certainly chose a dark and gloomy place to leave everyone hanging but … this story will have a happy ending. I promise you that.
Let’s resume the narrative. AWoL part 2. I’ll pick up where I left off.
It was January 1st and I had just decided to go on leave. I’m not gonna lie. Things did feel pretty dark and gloomy at that point. I was entirely overwhelmed – overwhelmed with what was happening to me physically and overwhelmed with the emotion of it all. It felt so HUGE. Although I knew I needed to take a leave (like literally didn’t have a choice), the thought of all of those wide open days was terrifying to me. The only thing that kept me going was a deep stubborn desire to win this battle. I truly felt as though I was fighting for my life. Not fighting for life … but fighting for MY LIFE. The life that I wanted for myself. A life in which I could thrive and not simply survive. A life filled with vibrant energy and happiness. A life in which I could achieve and experience everything that was in my heart and mind. A life in which the best people in my world would get the best of me and not just whatever I had left over after grinding out my days.
I started researching. Everything. Autoimmune conditions, panulcerative colitis, psoriasis, holistic healing, nutrition, fasting, diet, supplements, medication. I read articles, listened to podcasts, trolled on line forums, and reached out to people who know a lot more about this stuff than me. I learned that my condition is not exactly life threatening but that it could definitely shorten my life and could continue to progress in some pretty awful ways unless I took it all very seriously. I also learned that there is no single approach that works for everyone. No “autoimmune handbook”, no “colitis diet”, no “psoriasis solution”. What helps one person will not necessarily help the next. I learned that I would need to find my own way. So … I took baseline measures of my health and started making little changes to see the impact they would have on that baseline. I documented and recorded. I made notes and evaluated my progress.
Staying in that realm … the realm of logic and discovery … was a (largely subconscious) coping strategy. It kept me on the surface and prevented me from being completely consumed by sadness, despair, and fear. I stayed within that realm of objective investigation for several weeks. I pushed the subjective aside. I suppressed my emotions. I actively resisted letting my brain take me down the “what does it all mean” wormhole until I started to see some progress. Until I had proven to myself that the changes I was making were actually starting to pay off.
By mid-February, I began to notice that the intensity of my symptoms was diminishing. I had more energy. I was sleeping (a bit) better. I was smiling and laughing more. I saw a sparkle returning to my previously lifeless eyes. My skin looked healthier and the dark circles under my eyes had begun to fade. I began to recognize the person I was seeing in the mirror. The progress was slow, but it was undeniable and it was enough to give me hope. Little bit by little bit. Week after week. I felt more myself than I had in months. Only then … when I had found some evidence to be optimistic … did I allow myself to dive more deeply into the meaning of it all.
I am not even close to completing that exercise but I can tell you where I’ve landed for now.
I originally feared that I would have to transform myself completely … that I would have to live in an entirely different way than I have up to this point. I had visions of myself lying in bed in a dimly lit room with the blinds closed and pill bottles by my side (very victorian era melodrama if you must know). I imagined taking naps and drinking tea. Having long bubble baths (THE WORST). I imagined people coming in quietly to visit me … not for too long though … just for a few minutes so that I wouldn’t get too tired. Maybe doing the occasional crossword puzzle or listening to audiobooks.
It was fucking terrifying!
It turns out that I might not need to Emily Bronte my way out of this mess. I (think I) can do this my way. Yes I will need to make some changes but I don’t need throw away my coffee pot or permanently lace up my rollerskates. I need to be quite rigid with my diet (what I eat and when I eat), I need to spend most of my time with good positive people so that my fight or flight response isn’t being constantly triggered, I need to regularly spend time outside (ideally in the sunshine by the ocean), and I need to put boundaries in place so that my schedule is more manageable than it has been for the past few years. For sure.
I have begun to accept that I am someone who absolutely needs to be in motion. Exercising, moving, and exploring. That’s who I have always been, it’s who I am, and who I will continue to be. It will keep me physically and emotionally healthy. It will keep me from sinking into depression and from letting this autoimmune disorder set up camp in my body. My research proves it. I feel better when I exercise. The new twist will be learning to be still … truly still … at peace and fully present … when I am not in motion. I need to provide regular opportunities for my body to truly rest and for my mind to have the space it needs to complete an accurate diagnostic assessment of how I’m doing and to determine what (if any) recalibrations are required.
I need to step away from some of the distractions in my life … away from the people, places, and things that are not bringing me joy. If it is true that I am not invincible and that I might only have a finite amount of energy to give, I want to make sure that I’m expending that energy wisely. Creating, connecting, and contributing.
That brings us to today. Mid-march. I am preparing to return to work. Very soon. I am planning to take what I have learned with me over the past 3 months and to continue my research. I haven’t yet managed to get my symptoms in remission but I think I can get there. I have a good plan of attack, a lot more awareness, and (most importantly) hope.
I will probably publish one more AWoL post for those of you who are interested in the gory details. As I’ve learned and as I’ve said, there’s no one way to tackle this stuff but I’m happy to share what has been working for me in the hopes that someone out there might find something that helps them too.
Thanks to everyone who has been so supportive as I have begun to tackle this. It means so much to me and has kept me on track.
ADVANCE WARNING – This post will be more personal than poetic … more raw than polished. Although a metaphor (or two) might end up weaving its way into the words, this will be accidental rather than intentional. It will be full on rambling narrative and will probably be devoid of any kind of literary structure. There may or may not be wisdom revealed and there may or may not be themes that emerge. We shall see. This post is for me. It is for me to start making sense of everything that has happened over the past few months. I’m sharing here because it will help solidify my thinking and because it’s possible that someone out there will be able to relate and ultimately benefit from my somewhat unhinged freeform musings. I have foreshadowed that this “part 1” as there might be more to come. There usually is. This instalment will cover the events that led up to my decision to take a leave from work.
But where? The story has no identifiable beginning … no crystal clear moment in time that can be used as a starting point. So I guess I’ll begin with the diagnosis … a diagnosis with multiple threads that can be followed into the nebulous web of the past as well as threads that will undoubtedly form part of the tapestry of what is yet to come.
I was diagnosed with an autoimmune condition in early December. Yes … that sounds super frustratingly vague to me too. People have asked me “what kind of autoimmune condition?” and I have no answer for them because I’ve been given no answer myself. I think that’s about as good as I’m going to get. As I’ve begun to wrap my head around it all and have begun to poll the “experts” (those with lived experience and those with theoretical knowledge), I have come to understand that this underlying autoimmune dysfunction is creating secondary conditions that have actual names. Names like psoriasis and panulcerative colitis. I have come to understand that there may be more names to add to that list … especially if I don’t start to take things seriously and do something about it.
I have learned that once you have triggered an autoimmune condition you will have it for the rest of your life. It is a disease “in which your immune system mistakenly attacks your body. The immune system normally guards against germs like bacteria and viruses. When it senses these foreign invaders, it sends out an army of fighter cells to attack them. Normally, the immune system can tell the difference between foreign cells and your own cells. In an autoimmune disease, the immune system mistakes part of your body — like your joints or skin — as foreign. It releases proteins called autoantibodies that attack healthy cells” (healthline.com). Your focus post-diagnosis becomes one of symptom management rather than achieving a cure. The goal is to create conditions within the body that encourage periods of remission. That is my mission right now. It has taken me a while to get here.
Over the past several months, my health has been compromised in a variety of ways that I kept well hidden from pretty much everyone … most determinedly from myself. A little over a year and a half ago, my body stopped working entirely. One friday in october of 2017, I got home from work and collapsed on the couch and literally couldn’t move for the next 48 hours. I had never felt so weak. The low point was when I said to my partner that “I feel like life is leaving my body”. I have written about that before but (to recap), I didn’t mean to be dramatic and I didn’t mean to scare him. I was actually quite relieved to have words to explain how I was feeling. My partner was not relieved. He was terrified. He forced me to call my doctor and make an appointment for monday morning. He drove me there and made me promise to tell her what I had said to him. He threatened to tell her himself if I didn’t. My doctor was incredibly supportive and told me that she wanted me to take a leave from work RIGHT AWAY. I honestly didn’t have a choice so I did. For 2 whole weeks. It felt so dramatic at the time … such a huge decision.
But really? Looking back I realize how ridiculous I was to think that 2 weeks was even close to enough. It was enough to get me back on my feet so that I could keep doing everything I had always done. I even added new things into the mix to really over-compensate … challenging myself to do more than ever before.
Despite my incredibly active denial about the big picture, that leave did put me on the path towards recovery. It triggered my doctor to order a bunch of tests to try to get to the bottom of what was going on with me. Between october 2017 and november 2018, I went through a tonne of blood work and countless other tests. I went through cancer screening – skin, breast, colon. I saw specialists. I did (most of) what I was told … which is definitely a sign that my deepest intuition was trying to be heard over my stubborn creative brain that worked overtime to keep my favourite delusion intact … the delusion that I am invincible and that there are no limits to what I can do physically, mentally, and emotionally.
I was tired. Tired in my bones. I didn’t even recognize the person who would stare back at me on those rare occasions that I actually thought to look in the mirror. There were permanent black circles under my eyes and my body had puffed up with cortisol. There was no sparkle in my eyes. My skin looked dead. My limbs hung weak and my muscles had begun to waste away. I was malnourished and sleeping no more than 1-2 hours a night. I was living on potato chips because it seemed to be the only food my body could digest. And yet … and yet … I continued to work 50+ hours a week in an environment that was not at all conducive to creating / maintaining physical and emotional health. I continued to teach 4 evening yoga classes and to pick up the occasional sub class to help my teaching community. I went to spin classes and practiced yoga. I made a point to visit with my people and remained active in my roles as a partner and as a stepmom. I was doing everything and then some.
Until I couldn’t.
I went to see one of my specialists (a gastroenterologist) in early december. I was expecting her to order more tests as the last ones had disproved her original theory about what was going on. I walked into that appointment with my guard completely down. I was expecting no real news. I was wrong. Instead, she gave me news that would turn my world upside down. She told me that I had an autoimmune condition that had been confirmed by biopsies she had done earlier in the fall. She said I had something called panulcerative colitis and that I would have the condition for the rest of my life. She didn’t pause for even a second to register the look of shock on my face. In fact she didn’t make eye contact with me at all. She scribbled notes in my file without ever looking up from her desk. I was just the latest anonymous person on her conveyor belt. She wrote up a requisition for a chest xray that I had to do as soon as I left her office (to confirm I didn’t have TB?!?!? random?!), a blood work order that I had to complete that same day (10 vials), orders for several other tests, and two separate prescriptions. She asked if I understood. I shrugged my shoulders. That was the end. The whole appointment lasted less than 7 minutes before she ushered me out the door towards her receptionist who booked a follow-up appointment for me to see her again in 4 months.
Then I wandered into the abyss. Alone. In a state of shock. Blinking against the bright winter sun. Shallow breathing. Heart racing. Teetering on full fight or flight mode for the next several hours. I did most of the tests that day and I dropped off the prescriptions. I went through the motions and kept trying to push away the awareness that was tenaciously and relentlessly forcing its way to the surface of my conscious brain. An undeniable fact. The fact that I had done this to myself. I had done this to myself by pushing myself too hard for too long, by never giving myself time to slow down, by avoiding obvious signs that something was amiss, by accepting things that were truly unacceptable for far too long.
I stayed in denial for as long as I could. I kept doing what I had been doing and I pushed aside thoughts of what all this would really mean.
The haze finally lifted when I picked up my prescriptions. I listened numbly to the list of side effects that I could expect when taking the first drug … an old-school steroid that was supposed to fast-track my healing. It was when the pharmacist pulled out the second prescription that my brain screeched “no fucking way! that is NOT me!” It was a giant bottle of giant pills … pills that I would supposedly have to take 4 times a day for the rest of my life. I pictured that bottle on my countertop and I had a full melt down. That pill bottle had nothing to do with how I see myself. It represented everything I am not – old, weak, fragile. A victim. I knew instantly that was not how I was going to tackle this. I knew there had to be a different way. A better way. A more sustainable way than simply managing symptoms with pharmaceuticals. I knew in my heart that I had to find a way to come back to life and to tackle the source of the problem – my autoimmune health.
So … I booked an appointment with my doctor and my naturopath and they agreed. Medication is not the answer or at least does not have to be MY ANSWER. My doctor ordered me to take a leave so that I could get on top of this. After one final failed attempt to reorganize my work life so that I could tackle this without taking time off, I had to officially throw in the towel. With the support of my doctor and my family and my friends, I chose to take a leave.
That was January 1.
What came next will be dished out in the next instalment of AWoL … if I get around to writing it.