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!

Blurred Words & Past Selves

She flipped through the booklet, looking up and around, it seemed, after almost every word. The letters blurring, blending, and incomprehensible as she struggled to hang onto composure. The plastic numbers fly off the hook as the white coat pops in and out of the hallway executing the daily count. Today, it felt like everyone was speaking in numbers, non-sensical sounds accompanied by papers with checked off tests and endless paragraphs about things she never thought she would have to know. There were so many, too many, these alien words that now, somehow, factor into her life. She closed the booklet. She didn’t want to know.

The passage above could have been about the woman who was sitting next to me as I was waiting at the rheumatology blood lab. The lupus diagnosis booklet was in her hands, her eyes only able to scan the page for a minute or two, before staring blankly into the space ahead of her. My memory of a similar day 13 years ago immediately overwhelmed my senses. Suddenly, before I could even think about why I was moving, I leaned in and offered the woman my email address.

For when you’ve had a chance to process or at some point in the future… if you need someone to talk to, I said.

Looking back on the exchange, I realize that I was presumptuous in thinking that she would want to be interrupted during such a private moment. I was moved by the hope that I could ease some of the panic that comes with a fresh diagnosis, but in the end, it was my past self that I was doing it for; that twenty year old girl who would have given anything to have someone to talk to.

The Chance Encounter

During my solo trip to the mountains, I had a chance (or perhaps, not so chance) encounter. Hoping to benefit from the healing waters, I rented a car and drove to the site of the oldest established hot spring in the park.
I had been in the shallowest and shadiest spot of one of the two hot spring pools for at least an hour, trying to enjoy the water despite the blaring heat of the sun. The splash of nearby water drew my attention to Edith, a elderly woman, her hands clenched tight around the railing on my left. She slowly lowered herself onto the submerged step beside me. I think I may have started speaking first, sharing my dislike of the excessive heat and asking where she was from. A small farming community, she said, and that she was here with her husband to celebrate their 59th wedding anniversary. I congratulated her, commenting that it made me feel happy to know that such a wonderful milestone can still be achieved these days. She wasted no time telling me that it was hard work, that there had been much pain and many challenges throughout the years. At that point, her sharing became intense and intimate almost immediately. She started to tell me about the loss of her baby daughter, about how all the doctors were unable to tell her why it happened. She asked incredulously, “and you know what it was?” She paused for maximum effect. “It was because I had Lupus!” I couldn’t believe what I was hearing, but instead of slipping into shocked silence, I practically jumped on her words and exclaimed, “I have Lupus, too!” as though we were two young girls gossiping about a shirt we both had.
From there, she shared how she had suffered a stroke and how, due to a delayed ambulance and lack of immediate care at the hospital, she had been written off as a vegetable by her doctor. Her doctor had taken her husband aside and said, “put her in a home, she will never be the same again.” In my own head, I immediately recalled a similar statement made by my own physicians four years ago during the brain trauma I experienced, a warning to my family and friends: “She will not be the same person you knew.” Edith’s husband scoffed at the doctor and took her home immediately, eventually helping her to learn to walk, feed herself and function as she did before through love and prayer. She looked at me and smiled, “well, I’m here, aren’t I?” I smiled and thought, “so am I.”
By this time, it was as though the heat, the dull murmur of swimmers and lapping water had ceased, that it was just Edith and I and this strange surge of emotions that told me I was experiencing something, for a lack of a better word, special. We then talked of many things, relationships, of how she lost two of her other children as adults, how she is estranged from her remaining daughter. I marvelled at her strength and resilience. She paused. “Do you have a bible?” I fumbled my words, unsure if she would judge me knowing that I was not as religious as she. I lied and said no. I did have one, my parents’ bible, the one that I don’t remember writing and drawing on when I was sick. “I was raised Roman Catholic, but…” I started to say, ready to share how I had fallen out of faith because of my feelings on gay rights as a teenager, but she stopped me. “It doesn’t matter what religion you are,” she said, “the bible isn’t religion. The bible is just Jesus.” She proceeded to quote scripture, most of which I don’t remember, but my emotions were boiling over at this point, listening to this stranger trying to give me hope and comfort in the way she knew how.
She asked me if I would go with her to the second, hotter pool before I left. I agreed, walking slightly ahead of her and her husband, who quietly and chivalrously offered Edith his arm. She leaned into him, half whispering, “she has Lupus, too. It’s no accident that we met.” After that, I had the pool attendant take our picture and I left in a haze, driving back to my hotel feeling a bit confused, but also feeling oddly comforted.
In essence, the encounter spoke to me in the following ways:
You are not alone.
You will be okay.
And perhaps it sounds strange that I would feel the need to go away on my own in order to feel as though I’m not alone, but in truth, that was the very thing that happened.
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Into the Woods

Into the Woods

I’ve been absent lately, neglectful of writing and missing the fourth birthday of this strange, little online memoir. How it still manages to stay with me, tagging along in the quiet, post-crisis lull of food recipes and white blood cell count lamentations, I have no clue. I am glad though, to say that we are both still here, struggling as we are to understand what story we now have to tell.

I did, however, celebrate the four full years since my last major flare up (the longest flare-free period of my lupus life) by spontaneously hopping a train to the middle of the Rocky Mountains. I went by myself; hiking, trail cycling and kayaking (for the first time), immersing myself in the aqua blue of glacier lakes and the deep stillness of backcountry woods. The trip reminded me of how integral being outdoors was during the first six months of my recovery four years ago. Everyday, I went for walks with my parents, then eventually, when I was well enough, I would go on my own. I’d been so busy training for my run, I had forgotten the merits of slowing down, the healing power of a leisurely stroll in the woods. Since I’ve been back, I’ve been doing just that with friends and on my own. It has helped me prepare for this next stage of my wellness journey: Taking a real stab at my impossible dream – being medication-free.

A month ago, my white blood cells were up from 1.4 to 2.1. Since I was at 1.4, I’ve reduced my dosage of plaquenil one day out of seven, which leads me to believe that plaquenil isn’t a major factor in keeping my white blood cell count at a safe level (not that 2.1 is a safe level, but you know what I mean). It’s too early to tell, though. I can’t ignore that I’ve been on “Constant P” for twelve years. It will take a while for the medication to take leave of my body, especially with such a small reduction. My inflammation rate in my body rose from 5 to 24, which isn’t the greatest, but my naturopath says there’s no need to be alarmed. I may have been fighting some kind of infection that day. Presently (and thankfully), the rise in inflammation hasn’t manifested as pain of any kind.

The next steps are a very slow reduction, herbal supports and blood tests every three months to monitor my progress, very much like the process we went through getting off prednisone. There are risks, of course, and I have my eyes wide open. I am ready to solve the mystery of what plaquenil is doing to help (or not help) my body, so I can better understand what it takes to make my body a chemical-free zone. All the medication experiments/purgings and life-style changes of the last four years have come to this final test. It involves a lot of commitment, supplements and lifestyle modifications that I need to stick to, all of which can be quite overwhelming at times, but I am determined to purge twelve years of pharmaceutical toxicity. As my followers know all to well, I love an epic battle.  Bring it on!

And if I ever need a reprieve from the exhausting 24-hour job in the office of my own health, I will remember to take my tea break into the woods, where this is nothing to do, no risks to take, no sacrifices to make. Just trees and sun and moving forward, all at your own pace.

 

The Discomfort Zone

rain-water-falling

(source)

I eased the door of my apartment open, the mad percussion of the downpour reaching full volume in my ears. I stood there for a moment, in the way we all do before heading into the storm; my hood tied tightly, my chest lifted from a deep, preparatory breath. I was steeling myself, eyeing the driest path, taking the time to fully accept that I was leaving my warm, cozy apartment for the wet and windy world outside.  I scurried to my car, the fog creeping up my windshield as I plunked myself down into the driver’s seat. As I sat in my little puddle, I realized that I’ve been in the middle of that deep, preparatory breath for the last four years. I’m on the threshold… and apparently, I don’t want to get wet.  I’m taking that as a sign that it’s time to get uncomfortable. It’s been a while since I’ve pushed my boundaries or tried something new, so I’ve just booked my first solo trip in 8 years (paid completely with points!) and have put in inquiries about an intriguing herbal medicine workshop here at home. As of late, my crafty, talented friends have inspired me to rediscover/find my inner crafter (if she exists). Who knows, I might try and dig out my old knitting needles, although I’m pretty sure the skills that earned me my knitting badge in Girl Guides have long since dried up! I guess you wouldn’t necessarily term those things as “uncomfortable,” but for me, the “discomfort zone” encompasses any experience outside of your “wheelhouse,” the very specific list of things you think you know and are good at (so you keep on doing them and nothing else). These experiences can be as small as trying a new type of food or taking a different route to work. It’s about bringing the newness and excitement of traveling and discovering a new place into your everyday life. I believe that those little discoveries ultimately lead to the broader answers we seek.  And so, I’m ready to release my preparatory breath and make the mad dash into my discomfort zone. After all, it’s the only way to get to the warm and cozy place on the other side.

On a more sombre note, I realize that my rainy metaphor for reflection coincides with the devastating flooding that is happening in Alberta. I have fond memories of that province, especially living and hiking along the Bow River and surrounding area. My thoughts and love are with those who have been affected.

It Is What It Is

On May 26th, I crossed the 10 K finish line six minutes faster than I did last year, thanks to the magical presence of my amazing running buddy. Ever since I started running, I have been adamant that I would never run with anyone. The pressure and stress of keeping up with someone else was the complete opposite of the tranquil, solitary experience I was looking for. I wanted to be able to listen to my own body, to stop when I needed to, to go the pace I was comfortable with. So, when my friend offered to run the 10 K with me the week before the race, I was hesitant. My friend is a much faster runner and at a level of fitness that more than surpasses my own. When she assured me that she was willing to go at my pace, I happily accepted her offer, grateful for the support and the company. My left leg had been acting up my last few training runs, with shooting pains running up my thigh. I had resigned myself to walking most of the race, but with the distraction of great conversation and the shouts of encouragement and motivation from my running buddy, I stopped only once. It was a surprise for both of us to cross the finish line at 1 hour and 8 minutes. I had forgotten to wear my watch and my friend had left her pacer at home. It was a great feeling to go into it with no expectations and realize that I was able to achieve a personal best. As it always is in life, I couldn’t have done it alone and was grateful for the love and support I had that day, including my parents, who were waiting for us at the finish line.

This personal victory was balanced out by my most recent test results, which once again revealed a very low white blood cell count. This time, it’s 1.4. The up and down of my white blood cell count has been a pretty consistent thing in the last two years and I’m at a loss at how I can be pro-active and preventative. I asked my rheumatologist what I can do to increase white blood cell production and she looked at me apologetically and said, “unfortunately, all you can do is eat well and rest.” She said my low count means that my lupus is active, that it is affecting my bone marrow’s ability to produce a normal count. The reality is that as a lupus patient, my count will always be low, but 1.4, of course, is in a bit of a danger zone. The drill is the same, with me re-testing in a few weeks and hoping that my count will go up so that I’m not prescribed another medication.  I had been working with my naturopath, hoping to come down off my current medication. Sadly, it seems that I’m not as stable as I seem to think I am.  I may not be ready for that kind of step for a while. In the meantime, I’ll try to eat as cleanly as possible and try to do better at normalizing my sleep patterns, which has been a huge challenge over the last four years. Regardless of the fact that I’m prednisone-free, those sleep deprived nights of four years ago are still in my body’s memory. I can’t seem to wean myself off of my night owl habits, regardless of how tired I am. I sometimes feel like I’m addicted to staying up late.

I have been more tired than normal this past week and a little tender around some joints, perhaps in part because of my low white blood cell count, although I can’t be entirely sure. What I can say is that I’m feeling content to go with the flow and deal with what happens as it comes. The lupus in my body is just doing what it does and it’s not my place to judge that as good or bad. It is what it is.

Where I Am

soraya nulliah opening to grace 2

(source)

Seven days from now, I will not achieve the wellness challenge I announced in my last post. Due to a schedule conflict, I switched to an earlier half-marathon event, condensing the slow and steady training I had carefully planned.  When I reached 8 miles, my body started to give me messages: Headaches, nausea, increased fatigue, night sweats, and finally, a case of thrush.  Four years ago, my first experience with thrush was due to a high dose of prednisone, a drug that’s been out of my system for a year and a half. Without steroids to blame, my decision not to run the half-marathon was immediate. 

An oral yeast infection can be painful and unsightly, but compared to other lupus symptoms, it’s minor and manageable.  So, why give up so quickly?  There were other factors that were affecting my health besides running long distances, but the message was clear: “Stop. Slow down. This is not the time.”

Fortunately, I was able to cure my thrush naturally with an apple cider vinegar rinse (1 tablespoon of apple cider vinegar in one cup of water) and probiotics. I went easy on the running and with additional rest and nutrition, all the symptoms I was experiencing disappeared. I plan to do the 10 K next week instead, with the goal of running or walking it according to how I feel.  I still want to run/walk a half-marathon one day and although I can’t say I completed this year’s wellness challenge, I feel I’ve passed an important test. When I told my brother about my decision, he said, “if this had been 4 – 6 years ago, you would have gone ahead and done it anyway. I’m proud of you.” So, this is where I am; a long ways off of that half marathon finish line, taking a nap on the side of the track.  If that’s where I am, then it’s a good place to be.

On another note, you’ll notice I’ve been experimenting with a new look for the blog.  Let me know what you think!

Fitness Goal 2013: First Half-Marathon

“Only those who will risk going too far can possibly find out how far one can go.” - T.S. Eliot

My first week of training for my first half-marathon looms before me and I can’t help but feel anxious.  Can I really run that far? Are my joints strong enough to handle it? Am I?  The 10 K I ran last June feels like someone else’s dream.

This fitness goal is not just about running in the same race as my Dad, although that in itself is a huge, meaningful motivator.  To be honest, it’s not even about running. I’ve spent the last three years in an intense state of learning how to heal and listen to my body.  I’m down to one prescription drug, but where am I at physically?  Have I learned enough from my experiences, both in health and illness, to achieve this goal in a safe and healthy way?  Do I have the wisdom to adjust or stop my training if can’t?  I need to try.  I need to know.

In the last little while, I’ve been prepping meal plans for my 17-week training schedule.  I want to focus on mainly vegan, protein rich dishes but will be eating fish, eggs, and some chicken, as well.  I don’t feel knowledgeable enough to go entirely vegan while training, so I thought it would be safer not to make the attempt.  Here are a couple of vegan dishes I’m thinking of including.  If you have any super fuelling dishes you’d like the recommend, please send them my way!

Corn Chowder Quinoa Casserole (Let Them Eat Vegan - Dreena Burton)

Corn Chowder Quinoa Casserole (Let Them Eat Vegan )

Plantain & Pinto Bean Stew (Veganomicon)

Plantain & Pinto Bean Stew (Veganomicon)