Five Years Later: A Love Note to my Brain

Weeks ago, I marked the fifth year since I felt that strange push back, the crackled snap of separation from who I thought I was and that person who was doing things I never said she could. I took quiet note of this anniversary, the day lupus-induced inflammation took over my brain. I was going to acknowledge it here the way we all do when we find ourselves traveling the cycle of time, pausing to remember the pebble stones we lay down along the way. How far have I come? What have I learned? What will I do now? But I didn’t answer those questions, I didn’t want to. That day, it was enough to say, “yes, that happened.”

Today, an entire month later, I found myself belatedly marking the occasion with a love note to none other than my fascinating, enduring brain:

Dear Brain,

I still don’t fully understand what happened to you and I’ve come to accept that I never will. I don’t know how you managed to keep me, the real me, conscious amidst the chaos and for the times I was not, I want to thank you for protecting me and making me forget the worst of what “she” did. Thank you for being resilient, for allowing me to not only return to myself, but to uncover the parts I’d long forgotten. I’m sorry for leaving you vulnerable through my denial and meager self-care. I promise I will never do that again.

You are amazing and I’ve been grateful, so very grateful, every one of the last 1,825 days.

Love, Elena



(Image Source)

5 Tips on How to Bring the Retreat Indoors

We all come to a point where we want nothing more than to wave the white flag, run for the hills, and nap (folded white flag = awesome pillow). Okay, the last part is Elena-specific, but you get the idea. Whether you’re running from work stress or the ups and downs of chronic illness, from time to time, we all need an escape. Fleeing the concrete jungle and freeing yourself out of doors makes sense, but what do you do when you’re stuck in an office or sun sensitivity has turned you into a 10 – 4, vitamin D deprived hermit? Here are 5 tips on how to bring the outdoor retreat indoors:

  1. In my 2010 post, “Me, My Brain, and I,” I discovered that “natural, tranquil scenes caused different brain areas to become `connected´ with one another – indicating that these brain regions were working in sync. However, the non-tranquil motorway scenes disrupted connections within the brain.” Remarkably, a painting or a photograph of a natural scene has the same benefits. My ninth floor office overlooks the heart of downtown, so I’ve set my desktop image to a lush forest pathway. When I take eye strain breaks, I clear my screen of documents and reveal my electronic get-away. Co-workers often linger for a closer look at the warm, rising sun pushing through the shadowy, dense mass of trees. Most walk away mumbling about changing their desktop image. Maybe you should, too!
  2. My desk is in a large room with other co-workers, so I usually have my headphones on to dull the noise and distractions around me. Lately, I’ve been listening to the nature soundscapes on Songza, especially the tropical waves playlist. It drowns out the noise and provides a background of soothing, natural sounds that allows me to focus on the large amounts of editing I do in my job. If you can’t go to the beach, listen to it!
  3. I’ve enjoyed the results of my father’s green thumb both indoors and outdoors my entire life. Because of him, plants are an integral part of my ideal living environment. The fact that I’m a sun sensitive apartment dweller has kept me away from the joys of an outdoor garden, so I’ve cultivated my own indoor version of hanging vines and terrariums, water plants, and other leafy varieties. According to an article by the Daily Mail, hospital patients with potted plants close by said they experienced less pain, anxiety and tiredness, while houses with plant-filled rooms contain between 50 and 60 per cent fewer bacteria than other rooms without plants. Have a murderous history with our green friends? Check out this link on 22 hard to kill houseplants. While you’re at it, add a few potted pals on your desk at work. Plants not only decrease stress and detoxify the air, they also increase productivity and creativity!

    Prednisone moon-faced and recovering from Lupus Cerebritis in 2009 with the aid of my dad's fabulous indoor garden in the background.

    Prednisone moon-faced and recovering from Lupus Cerebritis in 2009 with the aid of my dad’s fabulous indoor garden in the background.

  4. Take your laptop or book and grab a spot in a coffee shop with a view, or somewhere with lots of indoor greenery like a conservatory. You’ll get “out” for a good dose of natural world goodness while getting a break from that sun-sensitive hermit suit.
  5. Think inside the box when getting together with friends during peak sun hours. Recently, on a particularly hot and sunny day, I had a picnic lunch with a friend in her closed in front porch. Don’t have one? Pick a room in your home with the best natural view, roll out a blanket, and enjoy! Take a scenic drive to a tea house out of the city or for the parents out there, set a playdate and head to an indoor pool, water park, or aquarium.

A nature retreat from the stress and challenges of our lives can be hard to do, especially for those of us living fast, urban lives. Trying to avoid an ever present burning ball in the sky at the same time is even more difficult. If you can’t have it all, be creative and have a small piece!

In other news, I’ve added a new “About Elena” page to the blog! I’ve wanted to create one for a while now, so I’m happy to be able to give my readers a condensed timeline of my lupus experiences along with a few fun, fast facts about who I am beyond my lupus journey. Check it out on the top menu bar of my home page or click here. Feel free to visit this page anytime to post any questions or just to say hi. I’d love to hear from you!


The Secret to Hippocampus Happiness

My inner neuroscience geek and I couldn’t help but be pleased with the exclamatory greeting that welcomed us upon arrival to my most recent naturopath appointment, so naturally, I wanted to bring it home to you!   147  minutes of aerobic goodness per week was a pretty laughable goal back in the day with a busy work schedule and consistent flares.  I’m not at all surprised to learn my hippocampus was dwindling as a result.   Some Lupies experience short-term memory loss as part of their “lupus fog” and fatigue.  I’ve never experienced that (except for a short time during my last flare), but my long-term memory is terrible.  I don’t know if that has anything to do with Lupus, but most often when keepers reminisce and ask, “Elena, do you remember when…” my answer is no.  It saddens me that so many of my memories are not readily accessible to me.  The brain is an incredible organ, capable of mysterious ways of healing and regenerating, so I am hopeful this will not always be the case.  If I can make it happen, potential growth in my memory muscle is a definite bonus for me!

At the moment, my two summer dance classes and running put me over the top for aerobic minutes and with yoga twice a week, I’m the most active I have ever been in my entire life.  Don’t get me wrong, my body and I are still struggling to understand each other in this strange, pain-free state, so my physical adventures are still in the stage of slow and steady discovery.  In yoga class, my muscles and I are never more aware of this!  But, really, for me, it’s not so much about the minutes, it’s about sustaining the regular physical activity, something that I’ve never had the ability or the chance to do until recently.  To be honest, I’m happy with ANY amount of minutes!  My last week of summer dance classes end next week, so my high aerobic minutes will take a hit, but at least for now, I’m making my hippocampus happy and hopefully, all this activity is increasing my white blood cells as well!

In related news, this past Sunday, I completed the 2.6 mile run I committed to in a previous blog post. I surpassed my finishing time goal of 30 minutes by four minutes, and to my surprise, came in 6th in my age category!  The run included families, so most of the women in my age category were slowed down by their children, putting a pretty hilarious spin on my ranking, but it was still a lovely turn of events!  My next running commitment is a 10 km run benefiting the Canadian Diabetes Association in September.  It will be the longest distance yet (eek!), requiring an actual training plan and increased awareness of what my body needs in regards to recovery time and nutrition.  So, it seems I have a bit of research ahead of me, especially in light of the wear and tear Lupus has already caused my joints.  I can, of course, always consult my running guru (a.k.a Dad) for guidance!  Who knows, a new category of posts may be in order to record my “running newbie” high jinks!

Dance Diaries Wednesday: Keeping the Faith

According to The New England Journal of Medicine report on the effect of recreational activities on the mental acuity of the elderly, the greatest risk reduction of any activity studied, cognitive or physical, was dancing.

“The cerebral cortex and hippocampus, which are critical to these activities, are remarkably plastic, and they rewire themselves based upon their use.”

And from the study itself, Dr. Katzman proposed these persons are more resistant to the effects of dementia as a result of having greater cognitive reserve and increased complexity of neuronal synapses… Our brain constantly rewires its neural pathways, as needed.  If it doesn’t need to, then it won’t.

….. Dancing integrates several brain functions at once, increasing connectivity.  Dancing simultaneously involves kinesthetic, rational, musical and emotional processes.


Dance also improves memory by forcing you to recall steps, routines and dance patterns, most often with very little time to process before moving onto new choreography.

Okay, so that’s the science.  Makes sense, right?

Way back when I started this blog, I claimed that I was “the lab rat of your dreams,” that through me, you could all safely experiment with the mysteries of lupus and my, at the time, uncooperative and manic brain.  Things are less melodramatic these days, but I’m still down with some experimentation. I want to challenge every chunk of my brain to be more than it was.  I’m all about rewiring those neural pathways I keep reading about and lucky for me, I actually have the time to make a conscious effort to do it.

Tonight, more than any other night, I could actually feel the change in my brain from when I started dance class four months ago to now.  I knew I had a lot to catch up on from missing last week’s class, but I floated into the class, completely relaxed.  As I was laughing and throwing out silly commentary about myself, my brain was surprisingly sharp and focused.  At the end of class, my classmate commented:  “Wow, you caught on really fast.  You got more than me and I was here last time!”

And yes, I know, it makes sense that the more you do something, you get better at it, but for me, my classmate’s comment means much more than that.  After experiencing the inability to control what you say or do, to feel negative changes in your cognitive abilities, to know that your brain has lost it’s ability to understand what’s real and what isn’t, there’s a part of you that loses faith in your brain.  And even now, when I am “normal” again, I still wonder if there was a permanent loss up there that I can’t feel yet or whether or not my brain would be able to “survive” again if I went through something like that again.  I still don’t know those answers, but tonight I feel encouraged.  I feel happy.