What Would You Say?

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.

E.

p.s. Leave me a comment with your words of wisdom to your past selves – I’d love to hear them!

The Gift of Unconditional TLC

Happy Sunday! I hope you enjoyed Valerie’s take on what we can all do to raise awareness in Friday’s post. Since the awareness mojo is already flowing, I thought I would share the article I wrote for New Life Outlook that lists ten more ways you can help raise lupus awareness. Click on the screen shot below and let me know if you have any ideas of your own to add to the list!

awareness article

It’s Victoria Day long weekend here in Canada, so many of us are at the cabin, campgrounds, or settled in for a comfy and relaxed few days at home. Where I live, May long weekend is notorious for giving us heavy rain or as is the case this year, a chance of snow (shudder). Yet, regardless of the forecast, there remains this determination and will to unwind, come hell or high water. The drudgery of daily life can be a black hole, so we cram all that TLC into small pockets of time; long weekends, Christmas holidays, vacation time. Somehow we believe that our worlds will balance in that small amount of time, which is why vacations can sometimes feel more stressful than relaxing. Even in our leisure time, we put pressure on ourselves to achieve instead of letting ourselves relax without conditions.

I like the idea of unconditional TLC, but I am realizing that putting that into practice is another thing entirely. I’m currently on a self-gifted, extended break to recover from several energy depleting months. I am two weeks in and I filled the entire first week with volunteer commitments and the second week, I managed to assemble a schedule that was just as busy. It’s a different kind of busy, which I think is okay, but I need to give myself some time to unravel and breathe first. No avoidance, no conditions, no need for justification, just BECAUSE.

Do you feel like you have to justify the breaks you give yourself? Are you able to create space in your life for “long weekend moments” everyday?

I know my posts have been few and far between in the last little while and most have been around information sharing of various kinds. I’ll be jumping back into my storytelling-focused posts very soon, I promise! In the meantime, I hope you all create some space today for some unconditional TLC!

The Art is a Science

Yesterday, I stumbled upon this article featuring “Neurocomic;” a graphic novel that uses whimsical black and white drawings to explain the inner workings of the brain. Delving deep into the anatomical nitty gritty can be a bit overwhelming for this naturally right-brained gal, so I found this innovative partnership between a scientist and an artist very exciting. Multi-disciplinary work like Neurocomic paves the way for a general re-imagination of how health-related information is given to the public. There is a disconnect between the knowledge of physicians and the public’s ability to process and utilize that knowledge in their daily lives. By working together, the creative sector can be the translator, the link that connects patients to the information, or the art itself can be an outlet for processing the emotional ramifications of illness or caregiving. Perhaps more importantly, it creates an opening for a sense of lightness and play; two things that are seldom found in the dark corridors of failing health, but so sorely needed.

I’ll leave you with Neurocomic’s lovely trailer and a quote I found on the blog, “Creativity in Healthcare:”

“When I come to the hospital for an appointment, I leave the doctor’s office with nothing. I have no idea what the diagnosis will be, or when I know, if I will live. I’m not me, I’m nobody, I am my illness. I’m nothing. Then I see the artwork and I walk down the gallery. I start to feel again…I am back. I am myself again. I have an identity, I have a life. That’s what your galleries do for me. I want you to know what they have meant for me.” (oncology patient at U. of Michigan)

The Hero’s Journey

Recently, a newly diagnosed friend asked me how I dealt with losing so many parts of my life without disengaging emotionally.  It was a weighty question, one that I needed several hours to ponder and properly answer, mostly because I am continually processing the Lupus-related loss in my life. One of my answers felt almost too silly to write down, although it was, during my darkest days, one of the strongest lifelines I had at the time. That lifeline was this book:

photo

At the time, I was numb, over-medicated, physically broken, and the most alone I have ever felt in my life. This book eased the loneliness, gave me a place of refuge, and started the slow journey back to hopeful and positive thinking. Engaging in Kay’s fantasy world allowed me to escape my current circumstances, while opening the door for me to look at my own life.

I think it’s important to have an escape, even if it’s for 10 minutes everyday, whether it be reading, cooking, drawing, knitting, DIY projects, going for a walk, etc. Your illness or personal issues should not be allowed to take over your entire life. Healthy, mind-focused, productive escape gives perspective, it reminds you that you are not your problem or illness, that there is so much more to you than that. It can create the space and the energy you need to re-engage with your life.

Escape is the way in.

Fionavar Tapestry made me reflect on the solitary journey each of us must take when trying to reclaim our will and spirit to carry on. Finding that will is the starting point to everything; to healing, to giving a damn, to getting through those times when there is no one there to help you decide, move on, or let go. At the end of the day, it all comes down to you. You are the hero you have been looking for.

What was the lifeline that helped you re-engage in your life story? Send me a comment and share your great escape. I’d love to hear about it!