Everybody hurts…sometimes (R.E.M.)

Human-Art-Brains-Made-With-Food

A fascinating and frustrating journey into my brain. (As printed in the Bridge River Lillooet News on Wednesday, May 27, 2015).

When I reflect upon writing to tell an audience about my health, I think of the song by R.E.M. titled, Everybody Hurts. I suppose I see the song as a preface to this article; my suffering is no greater than and, in several ways, is much less than the experiences of many.

In September of 2013, I had an intracerebral hemorrhage in the left thalamus region of my brain. The bleed measured 3cm by 4cm and precipitated a stroke. The bleed itself was caused by a cluster of malformed blood vessels in my brain, called a cavernous angioma. The abnormality consists of weak vessel walls allowing for blood to leak through and into the brain. The MRI also indicated two smaller, older bleeds had occurred, which explained my symptoms over the two years prior to 2013. For two months in Vancouver General and Royal Inland hospitals, I worked with professionals including nurses, neurologists, neurosurgeons, occupational, speech and language, and physio therapists, and a rehabilitation doctor. I still work with some of these individuals and, in Lillooet, I continue to receive exceptional care. Of course, to say family and friends have been supportive would be an understatement.

The journey into the brain has been a fascinating and equally frustrating one. With my husband and the neurosurgeon, we opted not to do surgery as the outcome may have extended my life, but would have greatly reduced my quality of life. This is because my CVM (cavernous malformation) is located in a deep (termed “eloquent”) area of the brain. Research indicates that between 35-50% of people with an intracerebral hemorrhage expire within a month of the event. I rarely need to remind myself that I am very fortunate.

But, there are those odd times where I am irked by the deficits caused by traumatic brain injury (TBI, also known as ABI, or Acquired Brain Injury) which are transient, progressive, recurrent, and fixed. Since the thalamus regulates many functions such as one’s sleep and awake cycle and body temperature, I have insomnia and sometimes have the most painful chills. I have right side weakness, numbness, neurological pain, and headaches. I have difficulties with memory, processing, noise, lights, multiple conversations, questions, and instructions. The most dominate issue is neurological fatigue; the brain drain can be excruciating and often affects me in my entirety.

In Canada, June is Brain Injury Awareness Month. Whether one has had a sports injury, been in an accident, had a stroke, or seizures many of the challenges can overlap. The healing is not necessarily linear in nature and the more we learn about the brain, the more complicated and dynamic we find it to be. TBI people often look fine on the outside, but find navigating their “new lives” difficult. The following is a list of websites (including my blog) which have useful resources and links:

http://biac-aclc.ca/2011/05/20/june-is-brain-injury-awareness-month-2/  (Brain Injury Association of Canada),  http://www.brainstreams.ca/  (British Columbia Brain Injury Association), http://www.kbia.ca/index.html  (Kamloops Brain Injury Association), http://www.normandoidge.com/

My May Stream of Consciousness

streamconscious

My meditation instructor is gone for a month…bummer because I get lazy when I am left to do it solely on my own. Mother’s Day soon. It’s the first Mother’s Day Michelle will have without Melissa, her only child. I loved coaching her. A year since she died…so young. I am taken back by how I feel. I visit her grave. Why did I survive?  Sometimes there is guilt about survival. There is guilt if I push myself too hard and put myself at risk of another hemorrhage…how would my children cope if I passed? I try to avoid thinking and plant a small garden. It hurts my brain to bend over and plant the seeds and weed. I may just observe it now and let it become a jungle. I write an essay for a Globe and Mail contest…that ends up being more tiring than enjoyable, but it’s a kind of “bucket list” thing I can check off. The big item is letters to my children should something happen; I keep avoiding that…besides – I am not dying…in fact, this month I am feeling like I am in a bit of a F-it mood to the cvm in my brain. The naturopath gives me B12 injections for energy, which last about a week, but not long enough, so we are going to try glutathione. Then, in all of my stubbornness, guilt, sadness, and longing, I join a group of women for some mountain biking. That was dumb. Dumb, dumb, dumb. Paying for it now. Headache. Odd feelings. I know it will pass, but now I am mad at myself. I guess the biking is another item from the list…to engage in an activity I used to do…but it is so ego centered. And 90% of the time I am absolutely, unequivocally, and genuinely happy to be right where I am at. So why do I sometimes feel bored – feel like pushing the limits? Mid- month. Sitting at a meeting about the planning of my daughter’s grade 7 Farewell Dinner. Too many conversations going at once and I can’t follow any. I try not to get frustrated. There is so much people don’t know about head trauma. It’s hard, I think, when someone looks healthy. I tried to write down what I could. Ending the month soon. My oldest daughter will be 27. My youngest daughter will play in a soccer tournament. My son should be getting some hours soon as an emergency fire fighter. My husband is almost done another school year and has started to golf again. I am feeling content again. Is it possible to avoid another cycle of sorts? I don’t know. June is just around the corner.

That Was Easy…Not!

easy

When I was still working at a local high school, the administrative assistant had an “easy” button that she had received from the office supply store, Staples. It was a fun, gimmicky item that was the trademark marketing tool for the company. When one pressed the button, it would state, “That was easy!”

At first, Sarah (not her real name) put it on her desk. I found that pressing the button helped in three different ways: first, it validated a job well done on a perceived “good day”. Secondly, pressing the button at the end of a “bad day” helped to lighten an otherwise tense eight hours, and finally, there were the random times where I pressed it for no reason, thinking I was funny.

Unfortunately, Sarah didn’t see the humour or understand my use of the button and tucked it away. I found it in a drawer, so she found a better hiding place and the button was never seen again.

I get why she hid it on me; I was quite obnoxious with it, like a little child with some noisy toy I was somewhat obsessed. Strangely enough, it had had quite a therapeutic effect, as if hitting the button and hearing the phrase, “That was easy,” was an instant fix to whatever I was feeling and experiencing. I grieved the loss.

Over the past two months, I had really wished for that button. I needed a reset button in a bad way and everything that I would usually do to bring me out of a slump was not working. December 2014 and January of 2015 had been such good months that I was setting new goals in a variety of areas and feeling more hopeful than usual. Then, I crashed. I suppose I may have been doing too much…I’m not sure, but whether I experienced a small bleed, or a neurological storm of sorts, I could barely function. Facial muscle spasms, myoclonus, muscle weakness and rigidity, weight loss, lack of appetite, and brutal fatigue were leaving me barely able to get through a lot of days.

Intellectually, I understand that the effects of brain trauma are complex and different for everyone. Although I have had a couple of weeks at a time where I would feel really unwell, I had never experienced a two month stretch of debilitation and had really overestimated my ability to handle assaults on the psyche.

Eventually, I decided to start from scratch. I went to the doctors and had blood work done to make sure nothing “new” was occurring. Then I went for a very long and detailed visit with a certified naturopathic doctor. These visits were beneficial.

Then I looked to my meditation practice and realized that I had really forgotten about addressing self-compassion. I find it fairly easy to apply compassion for others, but I don’t really think about it for myself. Most of the time, I spend more time feeling guilty for not being able to be closer to family, whom is spread out across Canada and the US. As well, I feel badly that I can’t do more for my immediate family both financially and otherwise.  So, when I came across a video and guided meditation for self-compassion, there was also some guilt around perusing this internet search for myself.

At the risk of sounding “hokey”, I was really surprised at the impact the meditation had and I can only say that one would have to experience it for oneself as I cannot put into words the profound effect it had on me. The video is ten minutes in length, which is a bit longer than the time it took to hit the Staples button, but the time to partake in the guided meditation for self-compassion is definitely worthwhile.

Here is the link http://www.yogajournal.com/meditation/guided-meditation-video-self-compassion/

I feel like I have turned a corner and my energy is coming back slowly. It has been quite a rude awakening to think that set-backs can last months. What can one do, but embrace all the support systems available out there and continue to learn? As Ellen DeGeneres states, “Be kind to one another,” but be kind to yourself as well.

The Beauty of Simplicity

cat box

I have had to back track a bit. By that I mean that I have had to remind myself about simplicity and the benefits of mindfulness on one’s physical and emotional health. I have been doing so much research regarding therapies, neuroplasticity, apps, etc., that I have lost sight of the whole focus of my blog…mindfulness.

The other day, my oldest daughter sent a picture of April, her and her boyfriend’s cat. April was snuggled in her favourite shoe box, not a cat bed, or expensive pet structure of some kind…a simple box. As a child and as a parent, I loved taking big boxes (ones that were probably used to ship a washer, or dryer, for instance) and turning them into spaceships, or what have you. It was “loads” of inexpensive fun.

Ancient philosopher and poet, Lao Tzu stated, “I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.”

The following information by Dr. Alice Boyes is a wonderful example of easy it is to come back to the beauty of simplicity. The link to the full article is listed at the end of the post.

6 Mindfulness Exercises That Each Take Less Than 1 Minute

Mindfulness exercises for people who don’t want to do formal meditation.

Post published by Alice Boyes Ph.D. on Feb 12, 2013 in In Practice

1. Two mindful bites.

Instead of attempting to do mindful eating all the time, try mindful eating for the first two bites of any meal or snack.

For the first two bites of any meal or snack you eat, pay attention to the sensory experiences – the texture, taste, smell, and appearance of the food, and the sounds when you bite into your food.

You don’t need to savor per se, you’re just paying attention to your sensory experience in an experiential rather than evaluative way.

2. What one breath feels like.

Instead of formal meditation, try paying attention to what one breath feels like.

Feel the sensations of one breath flowing into and out from your body. Notice the sensations in your nostrils, your shoulders, your rib cage, your belly etc.

3.Take a mindful moment to give your brain a break instead of checking your email.

Instead of checking my email in the 5 minutes between therapy clients, I spend a few seconds watching out my window. I usually watch the leaves fluttering on the big trees across the street.

Use mindfulness to give your brain a break rather than filling up every tiny space in your day by automatically reaching to check your email.

4. Air on exposed skin.

Pay attention to the feeling of air on your skin for 10-60 seconds.

This is best done when wearing short sleeves or with some skin exposed.

Why: You’re practicing being in experiential processing mode (as opposed to evaluative “judging” mode, which is our default).

5. Scan your body.

Scan your body from top to toe for any sensations of discomfort or tension. Attempt to soften to the sensations of discomfort. Next, scan your body for any sensations of comfort or ease.

6. Do one action mindfully.

Pick an action you do at the same time everyday and plan to do that action mindfully. For example, the moment you flick out your rolled up newspaper.

https://www.psychologytoday.com/blog/in-practice/201302/6-mindfulness-exercises-each-take-less-1-minute

My Word!

accountability

About a week and a half ago, I decided I was healthy enough to reduce my Gabapentin from 300mg to 200mg per day. I had little difficulty going from 900 to 300 mg a day many months ago. I had been exercising, reading, and writing more. I was feeling pretty good.  A week into reducing the dosage, I was struck with more headaches, increased neurological pain, reduced proprioception and feeling in my right foot, body jerking, extreme bouts of fatigue, and cog fog. I decided to check in with my doctor and she has suggested I continue for another month with the 200mg and see if my body adjusts.

In the meantime, there have been moments that I have been ready to give up and increase pain medication, or go back to 300mg, or skip meditation.  I have thought about what I have written here on the blog. I have contemplated what it means to ‘live by your words’; to be accountable to myself and others. This has been the beauty of blogging. I have made a new friend or two, received great feedback, learned new information, and now I am keeping my next goal in check by virtue of my own history in print.

I often read tweets posted by people who are stroke and traumatic brain injury survivors. I understand how difficult and tiring it can be to maintain the kind of stamina that is required to improve one’s health. However, I can tell you that I have never felt worse and have always felt better (honestly) after a meditation session even if it is brief. I have mentioned this before, but do check out YouTube. There is a plethora of guided meditations if you prefer that over silence. There are a variety of meditation apps, too. Check out this link for info http://www.healthline.com/health-slideshow/top-meditation-iphone-android-apps  An app not mentioned in the link is Insight Timer, which is free and you get to connect with people around the world who are meditating with you.

So, I shall take my own advice and persist in training my brain as best I can with meditation, nutrition, exercise, medication, and awareness that I will have to remain very cognisant about my body, mind, and spirit’s balance between an end goal and the journey. Wish me luck 🙂

The Road to Recovery

yellow brick road

Last week, while sitting in a group meditation, someone drove a knife into my skull on the stroke side…well, it felt as though a murderous event had occurred, but it was yet another bizarre moment of sheer pain from out of nowhere. This happens from time to time, and I am always struck by the pain’s ability to interrupt my thoughts, speech, concentration, and balance. What’s also extraordinary is its sprint from beginning to end; lasting only a matter of seconds, not usually longer than a half-minute, give or take.

So, what to do in a moment when I really don’t want to interrupt everyone meditating? I do the usual, which includes acknowledging the pain, breathing through it, and refraining from telling myself stories about it. But, the pain remains. This seems reasonable to me as I have had a busy week and a higher level of fatigue tends to reek a bit o’ havoc on the mind and body. Then, I go to imagery.

What sighs relief more than a camp fire being put out by a bucket of water? The pain in my head is the fire, my breath in is the water filling up the bucket, and my out- breath is the water being poured onto the flames. The sounds of the water extinguishing the flames and the subsequent hissing are the pain being defeated. I have to repeat this image two more times, and the pain is gone.

Perhaps, because the agony is generally short-lived, the discomfort would have passed despite the imagery. However, what I found was that, in the interim, I was calm and able to continue with the meditation. This is in stark contrast to the other times where I have had a death grip on a counter top, grit my teeth as I tried to remain focused on a conversation, or stopped walking and, bent over at the waist, hung on to my knees for dear life.

A recent article in Maclean’s reinforces the idea of using the power of our brain to heal itself and redirect those very powerful pathways of neurons down the yellow brick road and away from the five rivers of Hades.

         http://www.macleans.ca/society/health/how-your-brain-heals-itself/

yello

I’m confused; somebody tell a joke!

clarify

The title for this post are lines taken from the movie, Moonstruck with Cher and Nicholas Cage.

I would like to clarify some items and I will try very hard to not make things more confusing. The diagrams at the bottom of the last post regarding the body scan are supposed to show a front view (many circles) and a back view (three circles). Furthermore, the front view only indicates scan zones on one side of the body, but both sides are scanned simultaneously. For instance, one would breathe into both sets of toes, both feet, both ankles, etc. The back view centers around three points along the spine. If you wish, you can leave these points out of the scan.

I am including a link to Robert Peng’s Qigong work and I would also recommend his book, The Master Key. http://www.robertpeng.com/

As well, Sharon Salzberg is offering a 28 day meditation challenge beginning February 1, 2015. You may find details about it on her website. http://www.sharonsalzberg.com/

meditation

Body Scan

body scan

Hello! I have received some wonderful feedback and queries and I have taken the time to really think about my responses.

I hope the ten breaths have been working well and I hope you are ready for an “add-on”. If not, no worries!

A concern from a stroke/TBI survivor is with regards to loss of focus and forgetting which breath she is on. Here are two suggestions. First, place hands in a sort of prayer position on your lap. As you breathe in and out, gently apply pressure to your thumbs which are touching. In the next breath in and out, apply pressure to your index fingers. Continue this way through to your pinkies and then start again at your thumbs for round two. This eliminates counting and should alleviate some possible stress around memory.

Secondly, when I timed myself for ten breaths, the process took between a minute and a half and two minutes. In the whole scope of a day, a couple of minutes is not a lot of time. If you drop everything for a little bit of concentrated “you” time, you’ll be amazed at how much your focus will improve overall.

Regarding the add-on; this is an adaptation of Jon Kabat-Zinn’s body scan and Robert Peng’s Qigong work. Sitting or lying down, start at your toes. Take a natural breath in and out and imagine a warm, golden light surrounding your toes. Next, move up to your feet, breathe in and out naturally, and feel the heat of the energy wrap around your feet. Continue this process, moving up your body, to various points. The diagrams below indicate areas to focus on; however, if you have a particular areas that causes more distress and pain than others, you can always stay there longer before moving on. The diagrams also show a front view and a back view. The front view shows three spots along the torso. These are called your Lower Dantian, Middle Dantian, and Upper Dantian. The back view shows the same spots along the spine. You don’t necessarily have to focus on all of these spots. You may feel more comfortable simply scanning various points from your toes to your head. Just enjoy!

I believe that doing the scan in silence is optimal, but I realize that it can be quite difficult. There is a plethora of amazing instrumental music on youtube and you can also find guided body scans on youtube ranging from fifteen minutes long to an hour long.

Don’t fight the thoughts that come into your head, simply observe release them. If you forget a spot, no worries – go back to it later, or on another day.

Again, feedback is awesome! Take care.

body2body3

In 2015…

just breathe

I have always waffled on the idea of a New Year’s resolution. Some years I was quite gung-ho and other years I didn’t really think about making a resolution at all. It was clear, during this past New Year’s Eve at a friend’s house, that there was a sense of discomfort, stress, and pressures for some to not only create a resolution, but attain their goals or be viewed as a failure. It was a quintessential example of how we can be so unkind to ourselves and how our perceptions can really trip-us-up.

I have come to understand that it is not so much the resolution itself, but the stories we tell ourselves about our intentions and how we see unfolding events and experiences as linear. Such as, “If I do w, x, and y, then z should occur” and, if z does not occur, or turns out differently than the expectations we have predicted for ourselves, then we are a flop, and we, subsequently, scrap the whole deal.

Meditation can be like that for some people. They go in with a set of albeit wonderful forecasts, only to feel let down by a series of stories; they have attempted to guide the meditation rather than be guided by it. I hear things like, “Well, I tried it for a month and nothing happened”, or “I just can’t shut down my brain; it’s not possible for me”, etc. But, what if you went into it without any presumptions? What if one refrained from doing any “pre-commitment” reading on meditation or mindfulness? What if you just sat in a room and began to breathe?

This is my suggestion. Just start by using intentional breaths. Once a day, sit and take ten deep breaths, in through the nose, and out through the mouth slowly, but be comfortable with the exhale.  I live in a small house that can be very busy at times and I also did this in the hospital (no private room), and once you begin to breathe, and count the breaths, all the distractions tend to fade into the background enough that one can embrace the task.

I know some of you are in pain. Try not to get hung up on what you are supposed to feel, or not feel. Let everything just be and breathe.

Here is where the stories come in. You breathe deeply for a few days and it is feeling super. Then, on the fourth day, a child, or partner interrupts you, your dog scratches at the door to get in, the phone rings, or your stomach is growling…but who cares? Go back to the breaths later. There is no need to judge the situation, or become agitated. Don’t beat up yourself (or others)!

So, let’ try this for a few weeks and then, I will write more about where you may want to go from there. I would love to hear about what you are experiencing and, if you have any questions, I will attempt to answer them.

Reflections on…

pain

If you have ever spent a winter on the Canadian Prairies, or a reasonable geographical facsimile, you’ll know that the temperatures can elicit an immense amount of physical pain and mental anguish. But, as a kid, I seemed to be able to endure those weeks of daytime highs of -30C. Many times, we grabbed our skates and headed to our neighborhood outdoor rinks for hours of free ice time. The fun would always end abruptly when the boots came off at home and the feet began to warm. One would think this to be a welcoming experience, but au contraire, it was excruciating. The thaw created a burning sensation, much like one would expect to feel if you had simply stepped barefoot onto the coals of a fire to warm your toes.

I also broke my arm as a youngster, which is a common injury; however, what was not common place was my response. My class was going camping the next day and I wasn’t about to miss the trip. I decided the best triage included wrapping my arm in a tensor bandage, drinking some water, and going to bed. During the trip, my girlfriends helped me dress and undress, etc., and I participated in as many activities I could manage. When I arrived back home, I had no range of motion in my forearm whatsoever. I was taken to the hospital and it was discovered that I had broken both the ulna and radius in my arm. The doctor would have to re-brake the bones (as they had already started to set in the misaligned spots) and cast my right arm from the fingers to the underarm. This was to be my state of being for an entire summer. True story.

I look back at these events when I think about pain and wonder why I could seemingly bite the bullet on many occasions. I think a large part of my ability to face pain has to do with how my body reacts, which is something that I believe was never really in my control; a possible, genetic predisposition? The other tough stuff comes from my socialization. I didn’t grow up in a gushy family; you fall down, you pick yourself up, dust yourself off, and keep going. Whether or not this “refrain from validation” is an appropriate parenting technique is debatable, but it taught me that there was no point in whining and telling myself stories about my sorrowful predicament. Thus, my mental processes regarding pain were being altered and, unbeknownst to the young me, I was starting on a journey of recognizing the power of our thoughts on our health and overall wellness.

However, a specific injury and subsequent recovery is considerably different from chronic, long term pain. Chronic pain requires an approach that helps to change the perception of pain and the brain’s response to pain. In most cases, pain is measured by medical professionals based on what they can see with their own eyes, on a CT scan, X-ray, or MRI, but what’s causing the pain is not always visual. Take my thalamic pain syndrome in my right arm as an example. What’s more is the burden mentally. Chronic pain sets in motion a cycle of mental and physical anguish that can be unrelenting.

Approximately a month after I was home from the hospital after having a brain hemorrhage and subsequent stroke in September of 2013, I returned to my meditation group. Our usual routine includes 25 minutes sitting meditation, 10 minutes walking meditation, and then another 25 minutes. Afterward, we share and discuss a reading. I was worried; I was still weak and feeling out of sorts, how would I manage for the first hour? I felt all the discomforts, both physically and mentally, for the first ten minutes; I had a headache (as usual) and I still had a strong disconnect with my surroundings.  But, somewhere along the way I realized something: my headache was gone. Furthermore, my body felt centered, focused, and energized. I had done so much thinking about therapies, medicines, possible surgeries, death, my children, etc., that I hadn’t taken anytime to “be”. I hadn’t paused to breathe deeply and embrace all that life was presenting.

Here in lies the crux of mindfulness meditation: it changes our perception of, among many items, pain. I have heard many people state that if they sit in silence they will simply focus on all the negativity in their lives and what they could be eliminating from their to-do lists, which will simply make them more stressed. I acknowledge the impression they have formulated, but it is not accurate. Meditation does take work, but it is the kind of work that reaps benefits and is time much better spent than the ensuing logorrhea that can develop through our recusant story telling.

Don’t get me wrong. I still feel pain and I still complain from time to time. The difference may be in the fact that I try not to hang on to the thoughts streaming in about the pain. Through breath work, mindfulness, and meditation I am able to reduce the pain and the emotions, such as anger, sadness, and anxiety that can accompany the physical discomfort. What’s more is that this approach to health and wellness does not have to cost a lot, if anything. There are articles on the internet, YouTube videos, books (check out your local library and I really recommend Jon Kabat-Zinn’s, Full Catastrophe Living), and you may be able to find MBSR (Mindfulness Based Stress Reduction) courses in your community, or groups that practice mindful meditation. What’s more is that it doesn’t have to require a lot of time and, really, can be done anywhere. Even sitting on the commode can be a mindful experience!

Yesterday, I watched Jon Kabat-Zinn’s interview with Anderson Cooper on 60 Minutes. I laughed when Jon Kabat-Zinn stated, “We go, go, go, and then we die. How much of our time here was spent fully present?”  Unfortunately, we cannot be present if we are always raging, avoiding, and even talking.

In my quest to be a judicious writer, it is important for me to re-state that I attach much weight to a holistic approach to health. I still take Gabapentin for the thalamic pain, but I have weaned from 900 mg a day to 300 mg. I rarely take anything else for pain. However, I wouldn’t beat myself up either if my situation changed and I needed to increase or change medications. This is the beauty of mindfulness, the loving kindness and compassion we can learn to demonstrate not only to others, but to ourselves, which is essential to our physical and mental wellness.

http://www.theguardian.com/lifeandstyle/2003/oct/14/healthandwellbeing.health

http://www.theatlantic.com/health/archive/2014/04/treating-chronic-pain-with-meditation/284182/?single_page=true#disqus_thread