I’ve been trying to decide how best to introduce myself to you and I can’t choose the way that is most genuine to who I am and what will also be fun to read… Conversation comes very easily to me, but this feels like a strange mix between an autobiography, a dating profile and a work interview. So instead of agonizing over the perfectly original and most interesting way to begin, I’m just going to start listing off some random (but important) facts about myself:
– Anytime I write or say, “to keep a long story short” you can expect a lot of words to follow.
– I’m an Aries, Aries ascending with an Aries moon and I was born in the year of the Dragon. That’s a whole lot of fire signs, which explains why I’m very feisty, energetic, enthusiastic and driven.
– I was born to be a performer. I don’t remember a time when I wasn’t trying to put on plays or dance shows. If you came over to my house for a play date, we were most definitely going to force your parents to watch us in some creative performance when they came to pick you up. My babysitters had to watch me repeating the same choreography for hours. My extended family members knew that any and every party or gathering would include me interrupting their conversations to alert them to the fact that “the show was going to begin in five minutes.” I began my official professional career at age eleven when I signed with an agency, started auditioning for productions and working on real sets and stages. I’ve been hooked ever since. I went to a performing arts high school, graduated from a conservatory classical theatre program in NYC and have been lucky enough to work as an actress in French and English all over Canada and the US. Next year, I will be celebrating my twentieth year in the industry!
– When adults would ask me what I wanted to be when I grew up, I always answered “a vegetarian,” as if it was a viable career path. It took me a few years to figure out that I would never get paid for eliminating meat from my diet, but I am stubborn (see random fact about my astrological signs) and when I was twelve I prepared a full presentation for my parents. In it, I explained to them how I had done thorough research and was now going to pursue my childhood dream of vegetarianism. They were impressed and convinced. I never looked back and have been vegan for over 6 years as well.
– I am a mermaid.
– I love moving. I know! Strange hill to die on, but it’s true. I’ve moved 28 times in the past 13 years. Yes, that number is accurate because I counted them once when my friend made me make a list. For the record, I had underestimated a reasonable 15 times. I don’t own a lot of stuff, so moving isn’t too complicated for me. Plus I love the purging experience of going through everything you own and deciding what to keep and give away. I truly love discovering new places, meeting new people, experiencing new things. New = Good. I get bored easily and have always felt comfortable with change. I’m independent to a fault and I definitely pride myself on being a nomad.
– I am very, very, very curious. I was that kid in school who constantly asked “but why?” and I have never stopped. I am a very avid Google-er. I’m notorious for mid-conversation searches to confirm theories, get accurate dates/heights/ages/facts and to better understand words. (English is actually my third language, so sometimes I need some help!) Controversial opinion coming up: I even think it’s more than okay to Google your symptoms, possible diseases and diagnosis.
To keep a long story short, Google-ing my first big diagnosis almost three years ago led me to an article by Christine Miserandino then to the word “spoonie” and ultimately to discovering an incredible community.
I was finally officially diagnosed with Fibromyalgia on October 28th, 2015 after years of strange symptoms, inconclusive tests, hospital visits and crippling pain that I thought was a normal part of getting older. In true stubborn and resilient fashion, I had spent a very long time ignoring signals my body was sending me, because I thought I was just getting lazy or weak or old. I needed to “toughen up!” I worked quite a few busy late night shifts in a cocktail lounge through migraines with auras where I lost my vision and my hands went completely numb.
Most days, I collapsed onto my bed or couch after showering because I just needed to rest after such strenuous activity. I ingested more ibuprofen and acetaminophen than anyone should consume in their lifetime. In the morning, I woke up often paralyzed by stiffness, pain and inflammation and had to wait around twenty minutes before I could move again. And in one of the final straws, I fell during a trip to Los Angeles and hurt my wrist. The pain was not fun, but I could handle it and figured it was only a sprain, so I proceeded to tape it up for the following three weeks. When the swelling wasn’t going down and I was still unable to use it normally, my parents forced me to see a doctor. After a couple of tests and an X-Ray, the physician asked me why I had waited so long to come in with a badly fractured wrist. I shrugged and told him I had no idea that it was broken. He asked me how I was able to function with this kind of pain for weeks. I explained to him that I could point out many areas of my body that were in sharper, deeper, more pronounced pain at that very moment. He looked visibly upset and told me that this was not normal. And I burst into sobs.
I wish I could tell you that I was then bandaged up, given a prescription and a lollipop and sent on my way – but my health journey is more similar to any of the patients on House, MD. You know, the ones who are always on the verge of collapsing, somehow allergic to most medications and who only produce more contradicting test results. If there’s a one in a million chance, I’m always the unlucky one.
Over the following two and half years, I was diagnosed with twelve more chronic or autoimmune diseases/syndromes/conditions/illnesses. I rarely list them out because I find it upsetting, but here we go: Anxiety, Depression, Endometriosis, Interstitial cystitis, Hypermobility Syndrome, Ovarian Capillary Congestion, Autoimmune Urticaria, Chronic Migraines with aura, PTSD, Postural Orthostatic Tachycardia Syndrome, Chronic Pancreatitis and Polycystic Ovary Syndrome. My body definitely inherited my need to overachieve.
But back to my point and what happened when I Google’d Fibromyalgia and found The Spoon Theory. (I warned you about the length of my stories.) If you haven’t had a chance yet to read Christine’s article, The Spoon Theory is a disability metaphor she created to explain the reduced amount of energy available to people with chronic illnesses for all daily activities. Anyone who identifies as having that limited access to energy because of illness can identify as a “spoonie.”
Facing chronic illness is immensely isolating. It is very rare for me to interact in person with people who understand the frustration, the pain, the anger, the heartbreak, the struggle and the fear that I face every single day, but by typing “spoonie” in the search bar of my computer I found countless allies. I found people who were living through hardships so similar to mine that we could share our rage and our irritation without the dread of judgment. I found the kind of knowing support system that never needs to ask any questions, but is constantly strong and vocal. I found a whole new group of friends who can share their experiences with me, with a specific drug trial or treatment or how they’ve faced what used to be an easy activity now that they are no longer “normal civilians”.
It is also in great part because of my fellow “spoonies” that in January 2018, I was able to start working again and that I moved back to Toronto (lucky move number 29?) With their help and my wonderful team of doctors, specialists and therapists we have created a cocktail of medication, therapy, acupuncture, CBD, habits, diet and thoughts that now enable me to function – and at times thrive – in society. It was a long road, but I am so proud of where I am today.
Additionally, talking to people who also live with chronic illness has really opened up my eyes to the variety of treatments available. One person I spoke to likes to use medical marijuana for pain relief and has recently been trying dabbing a green gold shatter to relieve his nausea. Quite often it’s a case of finding unique ways to relieve your symptoms, especially if your illnesses doesn’t yet have a cure.
Okay, so I’ve rambled on for paragraphs to basically say this: the Internet can be a scary place where you can find scary things, but it can also be a pretty magical place where you can find amazing people. And I already know that you, the DTD family, are magical people and it is so nice to officially meet you! I think we’re going to have a lot of fun together!
After two and half years on bed rest or visiting hospitals and doctor’s offices, I’m thrilled to be truly alive and back in the real world again! I’m trying to balance being a good #spoonie patient with chasing my dreams and I’d love it if you followed along with me on my journey. You can find me on Instagram or on Twitter – please come say hi and tell me about what is important to you!
I hope you are having a lovely day + I can’t wait to speak with you soon!