Apparently when I consume liquids, I bring the glass or mug to my face and as soon as the glass/ceramic edge touches my lips, my eyebrows scramble up my forehead and my eyes widen as though the endeavour was quite surprising. Well, I do like surprises and I especially like tea… but that doesn’t explain all that, does it? Oh well, I think you all know by now that I’m a bit of a silly one.
“Where there is tea, there is hope” is a saying I saw etched into a tiny, decorative sign in a cute, prairie gift shop in Brandon, Manitoba. It was the dead of winter, my joints ached, my fingers tinged yellow and purple inside my fists, my chest heavy and inflamed. I distinctly remember that I had to put on more make-up than usual that morning to quiet the fiery redness of my butterfly rash (hide it, Elena, make sure no one can see). The saying really struck a cord with me that evening. Maybe it was because I was so cold and the thought of tea brought me some warmth or maybe it was because it had been one of the hardest winters of my lupus life. My pain had been relentless. I couldn’t even remember what it was like to have a “good day of pain.” I had lost hope of ever getting one again. It was nice to be reminded that hope can be found in a cup of tea; something so simple, something so readily available, something I have everyday. We get so overwhelmed and exhausted with life that we close our eyes in search of rest and so we miss it, we lose it. But hope is a little trickster, it’s always there… it’s waiting to surprise you.
Having a cup of tea is an analogy that people who preach “mindfulness” often refer to. They say that when you have a cup of tea you must truly have that cup of tea. Celebrate with your cup of tea. Your entire focus should be the experience of sipping, of the temperature, the taste, the way it feels as the warmth travels down into your body, the texture and curvature of the mug as it presses into the skin of your palms. Your mind is actively engaged in tea drinking and nothing else. Mindfulness is about active participation in the “now moment.” If you’re showering you should be showering, not going through your to do list or rehearsing the speech you are going to give to the employee you’re about to fire or planning the outfit you’re going to wear once you’re dried off. The Dalai Lama says that you should enjoy every moment in life, including brushing your teeth. Be present, he says. Brush your teeth like you really mean it, people. The Dalai Lama cracks me up.
There is science behind what the delightful and wise Dalai Lama says. As I mentioned in my last neuroscience session blog post, meditation, a powerful form of mindfulness, has been scientifically proven to show distinct patterns of brain activity and mindfulness training can actually start changing how your brain works. By choosing “mindfulness” over “mindlessness,” we reduce stress levels, resulting in the creation of anti-bodies, a stronger immune system and something called the “left-shift.” The prefrontal cortex of our brains houses our emotions. The “left side” of the brain is the “approach” part of the brain. It is language and spatial oriented and is the mediator of positive emotions. The right side is the “avoidance” part of the brain. It’s angry, fearful, it’s job is to “protect” you and it’s where the negative, emotional states are housed. This is where mindlessness resides, where our stress festers and boils over.
The Psychology PhD teaching my last neuroscience session asked, “is this happilogy or is it science?” Well, apparently the best predictor of recovery from a heart attack is optimism. Other scientifically tested facts include: hostility increases likelihood of heart attacks, pessimists are more illness ridden, depression and stress lower immunity, psychotherapy lengthens life of cancer patients, family turmoil exacerbates asthma and jobs with high demand and low decision latitude increase coronary problems. He posed a very interesting question: Does the pain cause anxiety and depression or are we causing it by a right imbalance?
Positive psychology is the rediscovery of the psychology approach that promotes human flourishing, it studies the strengths and virtues that enable individuals and communities to “thrive.” Positive psychologists seek “to find and nurture genius and talent”, and “to make normal life more fulfilling,” not simply to treat mental illness. This type of psychology was moved into the background after WWII with all the thousands of soldiers coming home with severe post-traumatic disorder. We needed to get these men better quickly, get them back into the work force, there was no time to concern ourselves with general human “flourishment.”
The Psychology PHD that taught my last neuroscience session on “Mindfulness and Positive Psychology,” shared with us the positive psychology exercise that he feels saved his life. It’s called “Three Good Things.” He had shared it in countless lectures as his students fervently took notes in front of him, but he never tried it himself, not until he found himself paralyzed from head to toe unable to speak. The exercise is simple. Keep a diary. Everyday identify and record three good things that occurred and your role in bringing them about. He said the first time he did it was as he lay there in that hospital bed, he did it silently, writing three things on the inside of his head. He said that one of his three things was, “well, I’m not dead.” He asked the class why didn’t he die? What was his role in that? I sat there stunned. I instantly had a flashback to when I was in the ICU two years ago, my kidneys and liver failing from anaphylactic shock, a team of white coats holding me down on the bed as others plunged oversized IVs into the sides of my wrists. Everything is blurry because I don’t have my glasses, I feel my head nod downwards towards my chest and I am jolted awake by faces and lips moving closer to my own yelling, “Elena! Elena! Stay awake!” I only realized months later while recovering at home with my parents that I was dying in that moment, that the doctors did not want me to pass out for fear that I would not wake up again. I did not know I was dying the whole time I was in the hospital two years ago. I had no idea. I had no doubt that I would be leaving that hospital. Is that part of the reason I didn’t die that night? And then it got me thinking about why I “returned” to my body this time? Why wasn’t I one of the many lupus cerebritis patients that I’ve read about who go into severe psychosis, are lost to their loved ones and then die of complications? What was my role in that? I remember smiling in class. Of course the Psychology PHD had a role in him not dying. I can’t articulate it, but what he had inside of him that eventually had him talking, walking, teaching that very class is exactly what’s inside of me. A fighting spirit, maybe? Will to live? A knowledge that there is more to be done, that this is not the time? I don’t know, but I’m glad it’s there.
The “Three Things Exercise” helps promote an internal locus of control, increases positive emotions and develops an appreciation of your role in influencing good things in your life. The exercise takes discipline and must be done meaningfully, everyday. When done properly, the exercise produces significant improvement with moderately to severely depressed people. It is proved equal to antidepressant therapy in degree and durability of improvement. It even increased relationship and sexual satisfaction in the least positive quartile i.e. in subjects selected for level of emotions.
So, have I tried this exercise, you ask? No, not yet. Looking back on my week, I think it would have been helpful if I did. I couldn’t find hope. Maybe it was the chemo on Thursday, maybe it was researching case study after case study where the patient dies or never recovers full cognitive abilities (did I mention I kept leaving off the end letter of words while note taking in class?), maybe it was the fact that it was cloudy the majority of the week, maybe it was because it was the busiest week of the year at work and I wasn’t there. Whatever the reason, I was on the floor again. I wanted all my brain books to f*** off. I wanted all my manic emails and messages to disappear. I wanted my blog to disappear. I wanted to disappear. I felt so removed and isolated from everyone anyway. I felt like life moved on without me. Doesn’t that only happen when you’re dead, I asked myself as I sat on my bedroom floor… but, I’m alive, aren’t I?! I rapped on the inside of my forehead – “Hello?! I’m still here, people!!”
What I didn’t realize during that lovely, pathetic episode was that I wasn’t in my head anymore. The chair was gone. I’m back. I’m here. “I” am here. The manic feelings drain away more and more everyday and I feel myself shifting back into the familiar crevices of my mind and body. I reflect on the last two months and the delusions and illusions of my mania spring up in front of me, sparkling clear, vivid, waiting to be faced, to be searched for truth and more importantly, to be let go. And I’m scared and I’m shaking like a leaf because I know I need to wade through all that, I need to fully address what happened in order to be in a healthy emotional state, in order to take back my life. Like I said before, the physical part is easy. I laugh now at how easy I had it before, that I would trade a million sleepless, painful, chest heaving nights for filthy steroid-mixed lupus cerebritis.
The good news is that by venturing into the frontiers of neuroscience and brain biology I have discovered that I have the power to change my brain. I have the power to make this whole thing into the best thing that ever happened to me. I have a role in whether I live or whether I let lupus “take the penthouse” of my life. It’s a 24 hour job when you are in the office of health. It’s easy to forget that you aren’t dead yet.
A fellow lupie who went through lupus cerebritis two years ago generously offered this advice to me: Remember who you really are, I guess it’s easy to forget, especially when you hear stories of things you did that you couldn’t even imagine. Don’t lose sight of you.
Okay… deep breath. I need to stop telling myself that I don’t know who I am. At least “I am.” I am here. Isn’t that the most important thing?
And so the battle blazes on and I will keep my eyes open, widen them even, the way I do with every sip, so that I can see the hope in my cup of tea.
Let’s drink to that, shall we?