CBC Wire Tap‘s bittersweet video compilation of life’s lessons stirred me to pose this question to all of you: What would you say to yourself at different points of your lupus journey? At diagnosis? After one year? On your last hospital visit?
As most of you know, my most powerful lupus lessons were learned almost exactly six years ago, during my last major flare. This month, my lupus cerebritis anniversary passed unnoticed until a friend mentioned it days after the fact. The shock of not remembering was quickly replaced with elation. Memory has had too much power over me the last few years. To feel its grip loosening in this way is what I’ve been waiting and hoping for.
Thanks, brain! This is the best anniversary gift you’ve ever given me!
That being said, I don’t think I should let six hospitalization-free years pass by without some kind of recognition! The video inspired me to come up with my “How to Age Gracefully with Lupus” words of wisdom for the Elena of six years ago. The perfect way to mark this milestone!
Dear 28 year old,
Don’t panic. Take it minute by minute if you have to. No matter how dark and full of pain your life feels, seek out gratitude – it will anchor you, it will keep you fighting. When in doubt, NAP. Saying no will give you more yeses. Seriously, you need to trust me on this one. And most importantly, there are people out there who do understand. FIND THEM.
Love, 34 year old.
One more message, before I go:
Dear YOU (yes, you!),
So glad we found each other.
p.s. Leave me a comment with your words of wisdom to your past selves – I’d love to hear them!
The pursuit of consistent self-care lives in the penthouse of my mind, ever present, most often personified by the wagging finger of guilt and dread. Are you sure you want to eat that? You don’t really think you can handle all that, do you? You’ll get sick if you do that. Stay home. SAY NO.
Sometimes I get defiant and turn that voice off because it’s exhausting to care so much about the consequences of everything. I eat what I want. I take on too much. I go through cycles and each time, I pay the price.
A self-inflicted hectic pace has resulted in my absence here and as I start to feel some space opening in my life, I can hardly wait to fully embrace a gentler pace. Ever since high school, I’ve taken on multiple jobs and projects at the same time, my energy and attentions constantly divided. I’ve come to the sad realization that I’ve never given 100% to anything. How could I? It’s time to simplify, to focus in: I need to take care of this moment. I need to figure out what that means in the context of my life. Big decisions lay ahead…
In other news, I’ve missed this tiny corner of the blogosphere! I’m looking forward to spending more time blogging and connecting with you! In the meantime, here are some FACE FORWARD updates:
- I’d like to give a huge shout out to the winners of this year’s WEGO health activist blog awards. Congratulations to everyone involved! It was such an honour to be nominated for two categories and to have had the opportunity to discover the advocacy work of so many amazing individuals.
- I also want to spread the word about a fabulous Facebook group called “Changing the World When You are Chronically Ill, Disabled, or Housebound.” According to creator, Esther Smith, it’s a “collaborative community of chronically ill, disabled, and housebound individuals, coming together with ideas to make small differences in the world, changing the world together.” How awesome is that?
- Lastly, I’ve created a “Links: Get Connected!” page located on the top bar of the blog. I’ve listed a variety of sites ranging from lupus blogs to my favourite food bloggers, to some awesome blogs that will give your brain a break from health-related reading. If you want to be added to the list, email me at firstname.lastname@example.org!
This blog is overdue for a lupie confessional, so here’s a peep into my most recent stumble into a lupus mental trap:
Last night, I changed my twitter handle from the name of this blog (@_face_forward) to @ElenaAnciro because living with lupus is just part of my story. I was in need of that reminder, of the room to expand beyond the deficiencies in my blood, the ever present defiance of my body. I’m proudly shaped by it, but I struggle not to be defined by it… especially last night, for no particular reason at all. Because that’s what happens when you have a chronic illness, it makes you question who you are, or more so, who you could’ve been without it. It’s a silly social media switch up, but it makes me feel less compact. The name change is a statement: There’s more to me than that.
The last month has been chock full of milestones: 13 years since my official diagnosis with Lupus, 5 years since my Lupus Cerebritis flare-up, and just last week, the 5th birthday of Face Forward’s strange and unexpected emergence into the blogosphere. To celebrate, I’ve compiled a list of my favourite posts from each of the last five years:
- 2009 – 2010: Where There is Tea, There is Hope and Goodbye Evil P – Yes, I’ve broken the rules already, but considering the first year of this blog has the most posts, I thought it merited two picks instead of one. My earliest posts are arguably the most intriguing in light of how my brain inflammation affected the content, but neither of my choices were written during the height of my manic episodes. “Where There is Tea…” is probably my favourite post of all-time. I fell in love with neuroscience in this post, a strong fascination that has stayed with me to this day. It is a reflection on tea, mindfulness, positive psychology, and brain power, but more importantly, it the first time I express a sense of hope and empowerment when it comes to my health. “Goodbye Evil P” marked the beginning of the end of taking Prednisone, something my long-time readers will know as a huge turning point in my physical and emotional recovery.
- 2010 – 2011: Face-Off: A New Name for a New Game – As my brain and body healed, the clarity of mind spurred a huge transition in the look and direction of the blog from an inward, hyper-personal focus, to one of reflection, but with more of an outward focus. I had finally escaped the confines of my mind and was determined to re-enter the world and my life. The dark and brooding theme of “Lupus Face: One in a Sea of a Thousand” was stripped away and the lighter, horizon-focused Face Forward was born.
Original blog header graphic for “Lupus Face: One in a Sea of a Thousand” (as of Sept. 2009)
New blog header graphic for “Face Forward: Finding Life in Lupus” (as of July 2010)
- 2011 – 2012: E’s Wellness Emergency Kit – The third year, I was immersed in re-engaging with movement through running and my Dance Diaries: Awkward Adventures in an UnCooperative Body series, teaching myself to heal my body with food through my Cooking for the Wolf posts, and starting to share my “Lupus taming” tips and tricks. This post lists the small comforts that have helped me through the Lupie cycles of fatigue and pain.
- 2012 – 2013: The Chance Encounter – During the fourth year, I was focused on setting health goals and the role that stepping outside of your comfort zone and creating new experiences for yourself (ie. varying degrees of epic adventure) can have on overall wellness. In this post, a stranger in a hot spring teaches me lessons in resilience and reveals the surprising conclusions one can only discover when traveling alone.
- 2013 – 2014: Redefining the Mission to Remission – The fifth year, I was very reflective and conscious of how the last few years have changed the trajectory of my life and the way I perceive my disease and my future. This post examines the evolution of my “mission to remission” and the merits of quiet victory.
I hope you enjoy visiting my favourite ghosts of Face Forward past. Comment below to share your favourite post with me, as well as your suggestions on what you would like to see in Year 6. I have some big plans in the works, including an exciting monthly feature by a guest blogger who will provide the unique insights of a medical professional with a personal connection to Lupus. I plan on strengthening my commitment to providing relevant, useful info combined with descriptive storytelling, improve the ease of navigation on the site, and begin to bring in other perspectives and tips on wellness that may not be Lupus specific, but still apply to our goal of sustained health. I also want Year 6 to bring the caregiver’s voice to the forefront, because really, where would any of us be without them? And lastly, be sure to check out my new “Blog Philosophy” page on the top bar menu to read about what I hope to accomplish in the Face Forward future.
So, happy belated fifth birthday, dear blog! You’ve remained one of my only constants in a time of great change and uncertainty. We’ve had a tumultuous relationship, you and I, but I think we’re at a point where we can say that we’re in it for the long haul. Year 6, here we come!