It's A Hard Knock Life

There has been a great deal of attention in the media regarding Post Concussion Syndrome, although for decades, it is not something which has gone unnoticed within the medical field.  It has eluded doctors and researchers for years, and continues to do so currently. Post Concussion Syndrome (PCS) is an important subject matter to me, for more reasons than the impact on mental health. I've decided to share my story, to raise awareness and possibly help others who may have or know someone with PCS.

In 2007, I suffered a closed head injury.  I was on a long board, which for those who do not know, is a very fast skateboard designed for just that, going fast.  Without helmet, my head hit pavement at approximately 35-40 m.p.h.  I lost consciousness and came to about 100 feet from the spot I wrecked.  There was no CT done, no MRI, and I absently attempted to carry on with my daily routines.  Or so I thought.

The first month I don't recall much at all. I have about three blurry snapshots. In the initial two weeks, standing for more than a few minutes resulted in nausea. I operated without awareness or understanding of why or what I was doing.  In the wreck, I also separated my shoulder, tearing through all three ligaments attached to the clavicle. Because of this injury, I also was taking pain medication, though sporadically.

Post-surgery for my shoulder, the next nine months was a test of courage, perseverance, and the most painful months in my life. I'm no stranger to injury. I was the child for whom you paid your insurance deductible on January 1st, because you WILL use it. My days as an athlete brought torn ligaments, displaced joints, and numerous other mishaps.

However, well off pain pills, the migraines emerged.  Everyday. My mood was unstable, and from what I've been told, my speech was, interesting.  I would begin talking, abruptly stop, and then either be dumbfounded for my thought or unaware that I had stopped speaking at all.  I was briefly in a relationship, and would ask my partner for a head massage daily. I am not a high maintenance person, so this was not an attempt to be pampered religiously. It was, at the time, the only comfort for the migraines.  Yet it barely took the edge off.  My heartbeat would pound in my head every night, and eleven to twelve hours of daily sleep was never enough. Impulsiveness, anger, crying, dizzy spells, headaches, apathy. Knowing what I know now, this is well within the norm for PCS.  Back then, I was a mess.

I began working with a doctor who was as uncertain of a treatment as I was.  For the next year, I was essentially her guinea pig.  We tested medications, researched through medical journals, and finally came to a conclusion of PCS.  This was a relief of sorts, yet terrifying.  Dementia, Alzheimer's, Parkinson's were splattered everywhere in medical literature. The sobering news of all was my realization that the symptoms of PCS, if lasting more than a year, were most likely permanent. At this point, I was heading into my eighteenth month.

My first attempts to get back into routine were clumsy and embarrassing. Social anxiety plagued me. My moods were still erratic. I began to understand my tolerance, or lack thereof, for noise and light. The light from a desk lamp was manageable.  My actions continued to be impulsive.  The headaches were a constant, yet dampened by medication.  For a brief time, I was happy in every aspect of my life, yet I had suicidal tendencies. This was bigger than "normal" depression or anxiety, I didn't want to end my life, but my moods were uncontrollable. The trigger, I learned, was stress.

When you have PCS, stress is your worst enemy. Alcohol ranks right up there as well.  Driving and talking on a phone, unbearable. Two people talking in the same room, overwhelming. Being interrupted in normal conversation, nerve-racking.  Needless to say, the smallest tasks I had taken for granted were sources of stress. You can only imagine what a "normal" stress could cause.

 Fortunately, my doctor found medications that keep my headaches to a minimum. I began to learn my limitations, which was a battle in itself. I do not LIKE limitations! My doctor provided the perfect analogy. My brain used to run like a Mac, now its more like an Apple IIe.

Five years later, I still have a daily low-grade headache. I would like to put my PCS in the past, but it's impossible. It is taxing, and is WORK.  Everyday I work on managing symptoms. Avoiding multi-tasking, pushing through lack of motivation, and thinking through every conversation. Words don't come easy anymore, I have to search for the next one to come out of my mouth. Happiness was once intrinsic, but now I work to get through the haze that is a part of my life. It is not a depression. It is a continuous process of reminding myself to display my genuine joy and happiness when my headaches and cognitive struggles stifle my reactions. An ex partner thought it was she that made me unhappy. No, the work involved to show my happiness gets exhausting.

However, I keep fighting.  There is always another potential solution, my latest grasp for straws involves treatment through a Chinese herbalist. Sure, I'll drink tea that tastes like, what I only imagine, is urine mixed with mulch. If it works, it's worth it. Although my recollection is fuzzy, I haven't forgotten what I was before the injury. Support is necessary. My biggest obstacle to overcome is acceptance. To face the difficulties and accept what comes with PCS. Understanding my injury is not visible to those around me, or those who care about me. Accepting the burden that I will be the one to make adjustments.  Most importantly, I have become vocal and a self-advocate for my injury.

With this being said, there are thousands of people whose symptoms are similar or far more debilitating. There are children and adults who will end up with PCS, who will need support. As a therapist, my job challenges me. But having PCS provides me with greater insight and awareness for myself and clients.
Here are some steps to take if someone you know has a head injury, even a minor one.

• Have a baseline assessment. The Rivermead Post Concussion Questionnaire  and the Standardized Assessment of Concussion are free on the internet. Establishing what is "normal" is key to determining changes. I have attached links to the questionnaires, and can be used before injury, immediately following injury, 24 hours post injury, and then 30 and 60/90 days post injury. 

• Ask for an MRI. This can rule out bleeding and second impact syndrome. A clean MRI does not guarantee a problem-free future though. This is the enigma of PCS.  

• Rest. Keep brain activity to a minimum. Even if a person can do daily activity, the brain needs to heal, immediately. 

• Seek support. Friends, family, a therapist, and/or online groups. It is critical to ask for assistance. I've provided links for associations and groups here too. 

• Be selective with doctors and professionals. There are those who believe PCS is imagined or an attempt to seek compensation (pending lawsuits). Find a physician who is supportive and understanding of your various symptoms and needs. 

• Seek information. Medical journals are chock full of studies relating to PCS or head injury. Heed my warning: There is disheartening and scary information to be found. Again, ask a friend to help and be aware of the stress involved in this task. 

• Never give up. There is hope for those with PCS. The spotlight on brain injury and concussions in the media has ignited the medical field, and will result in awareness, funding, and research on PCS.  

Fortunately, only a slim minority of those with post concussive symptoms will develop chronic or prolonged PCS such as myself. We are discovering the effects of concussions everyday, and I believe there will be a protocol or standard of care to emerge to reduce the likelihood of lasting damage.  The human body is resilient. If neuro-pathways are damaged, the brain will create new ones.  It may be a slow process, as i compare it to hacking through a jungle with a machete to create a walkway instead of following the trail.   I have shared my experience with others, but this was not always the case. I felt ashamed, weak, and terrified of ensuing judgment.  I made the decision to share my story, because it may help others and is a part of me.  I realized it is my strength that has brought me to this point, not a weakness.  With this comes greater control, acceptance, and hope. With this, I can be myself and discuss my injury freely.  Usually, this includes a sense of humor, as I am not afraid to poke fun at myself.  And laughter really can be the best medicine.


Links:

Rivermead Post Concussion Questionnaire 

Standardized Assessment for Concussion

Brain Injury Association of America

NeuroTalk Support Group

PCS/PPCS Facebook Support Group

Sowing Seeds of Play

I took a bit of a sabbatical from my blog :)

Looking back through my posts, I thought this one would be important enough to re-post.  We all have moments in our lives when we need to find our roots.  Whether that is spiritually, physically, mentally, or emotionally.  Of course, sometimes our roots have sprouted from seeds planted in soil which is not suitable for growth, leaving us with a false sense of stability.  Our flowers sure do look pretty, but underneath we are fragile and easily susceptible.  

At what point do we pull ourselves up from the ground and replant?  When do we realize that it is more important to plant the seed in good soil so our roots can support us, than it is to have the pretty flowers for all to see?

My reasons for this post, originally, was about using some basic concepts of play therapy in daily play with children to "plant a seed".  This still applies.  It is one of the principle reasons for which I am a therapist.  If I can be the one person in a child's life who accepts them unconditionally, after they have come to me having endured severe abuse, then I can possibly plant a seed of hope or doubt.  Hope that someone accepts them for who they are as a person.  Doubt that "everyone" dislikes them.  There is that seed that one person has accepted them unconditionally.  

However, I realized that this post and parable has always been important to me.  When we were scattered, where did we land? What do our roots look like?  Is it more important for our flowers to look pretty, even if the roots are brittle?  And maybe we our roots are strong, but it just is taking a long time for the flower to come out and bloom.  

I'm not going to change anything else in the post, so here goes:  
 
Although in this blog, I would like to keep religious views separate, I personally have always loved this parable:

³ Then he told them many things in parables, saying: “A farmer went out to sow his seed. ⁴As he was scattering the seed, some fell along the path, and the birds came and ate it up. ⁵ Some fell on rocky places, where it did not have much soil. It sprang up quickly, because the soil was shallow. ⁶ But when the sun came up, the plants were scorched, and they withered because they had no root. ⁷ Other seed fell among thorns, which grew up and choked the plants. ⁸ Still other seed fell on good soil, where it produced a crop—a hundred, sixty or thirty times what was sown. ⁹ ~Matthew 13: 3-9

This week, I was given the opportunity to attend a banquet to honor foster parents and children who had excelled, in spite of the challenges placed before them. As the county judge read their accomplishments, their eyes lit up, they sat up straight, and my boss stated the overall sentiment perfectly, "Seeing that makes it all worth it."

I hold firmly in my belief that children are incredibly resilient. This is based on my time spent, the hours being there with my clients as we work through the trauma, sexual abuse, fear, anger, and uncertainty under the cloak of play. 

But it takes so much more.  A therapist doesn't have a magic wand.

Sometimes I come across foster parents, bio parents, guardians, teachers, etc, who are hesitant to follow a guideline I provide. I am aware of the strain they are already under, and my requests are minimal, proven, and uncomplicated. Moreover, I assure them I am there to see it through. Yet still there are those who see the scattered seeds and point the finger when they will not grow.

An old friend and coach told me, at one of many low points in my life, "Everyone has a story." My head went down. "No, you'll make it. The great ones always have the best stories of how it came to be. Go tell em your story."

Everyone has a story. Carl Rogers believed every person has an inner desire to be better, and in turn, even the most poorly behaved child wants to be heard. Every child wants to be the seed that is planted and cared for, yet it is so difficult for children to tell us (with words) the reasons behind their actions. That is why play, and play therapy, is so important to me and my focus of work with kids. It is the best way, as of yet, to allow kids to tell their story and be heard.

I would like to share, for those who aren’t familiar with the basics of child-centered play, some of the fundamentals of the theory.  These are simple skills that can be applied anytime, with any client actually.  

For those not working from a therapeutic angle, try them out with a niece or nephew, a grandchild, your child.  Anyone.  Make it a special time set aside.  You can honestly start with 20 minutes a week and witness the child begin to tell his or her story. 

If you are setting time aside, let the child know that he or she can, “Say anything they want and do ALMOST anything.  If there is something they cannot do, you’ll let them know.”

This way, you aren’t setting the limitations ahead of time.  Normally, no hitting, nothing pointed at the face.

 

Then, follow these basic guidelines:

• Refrain from giving advice
• Let the child lead the action and conversation
• Avoid using praise words, instead, reflect the child's emotion upon achievement
• Accept the child’s expressions, feelings and choices exactly as they are
• Allow the child to make the decisions and direct, and avoid providing instruction
• Again, set limitations that are necessary to maintain safety

Think of yourself as a play-by-play commentator watching a game in action.  Pay genuine attention to the child’s actions, expressions, and thoughts.  Then, simply try to mirror these, verbally and expressively, back to the child.

Here's a link to the National Institute of Relationship Enhancement for more info: 

http://www.nire.org/

The Forest Through The Trees

In a therapy session, when I find my mind drifting, I remind myself to focus on one thing. One thing the client is saying or doing. If I can center all my attention on one thing, even for a moment, it will pull me back in. And I am, again, attending to the client. I'm in their world.

The past month has been a challenge, personally, and I find my thoughts wandering in and out of session.  This happens to all of us. We are influenced and distracted by thoughts, emotions, fears, etc. on a daily basis. As employees, spouses, parents and friends. One of the philosophies of being a therapist is "know thyself". And as I am aware of a shift in my focus, I am once again reminded of this important mantra.

Without observing yourself, our perceptions of the life we are living and our sense of self is skewed. Our emotions take over, and our ability to remain self aware is greatly decreased. I was on a teeter-totter today, yes...a teeter-totter. And in between my moments terror at the thought of sending my little client shooting out of her seat like a rocket, I realized how "knowing thyself" is much like a teeter-totter. Emotions balanced with self awareness. Tough. A balance between well being and personal integrity. Even tougher!  I read in another blog..."Even if we’ve gone off the beaten track, once we’ve found ourselves, we may still be in the woods, but we’re no longer lost."  Being a sucker for analogies, I had to include it!

There are several ways to increase your self awareness and find your path, but mindfulness is (relatively) easy and can be done anywhere.  It's a process of open attention to the present. You let your thoughts, feelings, and sensations pass before you, observing them fully. The key is to be aware of them, not to judge them. When emotions (any emotion)  seem to be teetering too much in one direction, for a minute, a day or several days, mindfulness creates center and totters you back out.  Obviously, more practice makes perfect, but even a quick check-in can help you focus and possibly be the catalyst needed to change your situation.   

 

Here are examples of mindfulness:

 

Notice Five Things 

1. Pause for a moment
2. Look around, and notice five things you can see.
3. Listen carefully, and notice five things you can hear.
4. Notice five things you can feel in contact with your body. (E.g. your watch against your wrist, your trousers against your legs, the air upon your face, your feet upon the floor, your back against the chair etc)