10 Things I wish I knew when I first got my brain injury and Post-Concussion Syndrome (PCS)

"Everything will be all right in the end. So if it is not all right, it is not yet the end." 

 ~ Indian expression 

 from The Best Exotic Marigold Hotel 

 I wish as a former professional writer I knew it could take me a week to come up with this list. Nearly 7 years post-injury this is a list of things I wish I knew when I was first injured - not necessarily in order of importance.

 1) Get an Advocate - Find a good advocate to take with you to all doctor appointments: friend, spouse, parent, older child, co-worker - anyone that is willing to be your voice when you can't find your own AND will fight for you. This person should:

• Know you,
• have time or willing to make time for this invaluable task,
• take notes, 
• educate themselves on tbi/pcs to know what questions to ask,
• know your symptoms & your progress, 
• ask for copies of your records to keep for the future, 
• coordinate your healthcare when you cannot, 
• won't take "no" for an answer and do anything it takes for you to get the best care available. 

2) Find specialists in TBI/PCS - Do your research to find specialists in tbi/pcs. NOT all doctors are educated, experienced or specialize in the nuances of brain injury or PCS.

• I never thought to ask a local tbi specializing attorney for their doctor referral list, but hindsight allows me to see they know the right specialists to see for tbi/pcs. It doesn't hurt to ask even if you don't need an attorney. 

3) Contact your local Brain Injury Association - if in America here is the link where you can find local resources - http://www.biausa.org/

 4) It's Okay to ask for HELP! 

• Asking for and allowing someone to help can be a humbling experience. It's hard, I know. 
• Allowing others to help you can empower them with a sense of purpose which also empowers you. 
• Be as specific as you can regarding what help you require. 
• Communication is complicated when you can't find the right words to ask for your needs to be met in the first place. It's a learning process on both ends. 
• Keep asking. Don't give up until your needs are met. Understand that loved ones might fail you when you need them most. It happens. Let it go and move on. 

5) 10 steps forward, 11 steps back - My neighbor discovered and made me aware of this process at work watching me over the first 2 years post-injury.

• As the brain rewires itself making new neural pathways: some symptoms might improve while others regress.
• It sucks. 
• It is frustrating. 
• Don't let this discourage you. 
• It's part of the process. 

6) Humpty Dumpty Syndrome - All of the king's horses and his men actually can miss some pieces when putting you back together again.
You might feel: broken, that you lost yourself, confused, hollow, missing all your puzzle pieces, like an alien in your own body, not know who you are anymore, like you have memories of another person's life that is no longer your own AND are stuck in a strange body without the benefit of a users manual on how it operates. It is a surreal sensation.

• This sensation is more common than I thought. 
• You are not alone. 
• If you feel this way - Welcome to the adventure of a lifetime! You get to discover a new you. Hold on to this thought when depression envelopes you. 
• I wish I could see this sensation as a gift of rebirth when it hit me, but I had to go through the grief process to accept the loss of the former Kristy to see this new one is just as good, if not better. 
• Stop the negative thoughts and replace them with positive ones. My son put sticky notes on the fridge to remind me. 
• Fake It Until You Make It - does in fact work. 
• You will make it through. 
• Coping Tools I: Antidepressants, counseling, friends, family, furry friends, co-workers, classmates can pull you through - if you let them. Friends remind us who we are when we forget. 
• Coping Tools II: Find new traits, abilities, skills, interests about you NOW to fill the void of loss. 

7) Laughter IS the best medicine! Find humor in the small things, big things and ordinary things - laughter can pull you through. My humor can border on inappropriate, dark and twisty. I own it. It's mine. If other's don't understand, it's their problem. (My son nicknamed me "Brain Damage", my mom was outraged, but I laughed until I cried. It felt great!)

• Laugh at yourself. 
• Laugh with others. 
• Laugh with joy at your progress. 
• Laugh with tears if you regress. 
• Laugh when you cannot find your words - it beats frustration. Literally. 

 8) Silver Linings - Call it a playbook or embracing your inner Pollyanna, but find your silver linings. Seek them out anywhere and everywhere - especially when you don't want to.

• Fight for the positive. It helps. 
• In order to accept losses, it helps to fill the void. 
• List your progress so you remember how far you've come. I forgot, the reminders helped.
• Make a list of the bad and find a positive that came from it. Update the list. Sooner or later you will see the positive outweigh the negative. 

• * I lost: my car, career, house, income, lifestyle, ability to walk & talk, my brain doesn't do techy geek anymore. 
• ***BUT ***
• * I gained: the ability to draw, a profound inner peace I never knew, deep compassion for the suffering of others, inner strength, learned how to live in the moment, I learned how to really listen to others, I still have something to offer, I'm more knowledgeable about tbi/pcs than some doctors, I'm an excellent massage therapist that specializes in brain injuries. 

9) Coping tools! Sensory overload and beyond... 

• Fatigue - sleeping is ok. You're not lazy, you have a brain injury where sleep allows your system to repair damage. 
• Brain Fog - Bodywork like: Massage, Shiatsu, Reflexology help ground you in your body. WARNING: sometimes our body is in so much pain it copes by altering awareness. Once fully grounded in your body, you may become aware of how much pain you're body now feels. The pro is the pain can now be addressed. 
• Light sensitivity - Sunglasses. Try different colors and levels of darkness for inside and outside use. Go cheap and buy several for each purpose and multiple locations. 
• Noise sensitivity - Noise canceling earbuds, plugged in to music or your pocket help filter out ambient noise. See an audiologist who can diagnose if you have physical ear damage or possibly hyperacusis where your brain can't filter the noise - musician ear filters can be prescribed. The filters run about $80 US/ear. Earbuds are an alternative if you can't afford the custom filters. 
•      * Close your eyes to listen - Many times sensory overload prevented me from being able to hear conversation directed at me. I learned by closing my eyes (effectively shutting off visual sensory input), I could hear and better comprehend what was being said. It was a Duh! moment. WARNING: I advise explaining your actions to others before shutting your eyes as... ahem...they find it rude unless they understand what you're doing. ;-) 
• Focus - My neurologist (also ADD/ADHD knowledgeable since he's experienced misdiagnosis of ADD w TBI) stepped out of the box to try ADD meds. It took awhile to find one that worked. This is the closest to feeling clear minded since my accident 6 yrs ago. Not all doc's approve of this treatment, but hey - it's worth a discussion. 
• Limits or Boundaries - Learn your limits. Others might try to tell you not to set limits because you're setting a mindframe of limiting yourself. Limits are more like boundaries that change as we do: they are flexible, they expand, they contract. Limits are good. Limits DO NOT mean you are limited. Limits are a stop-loss boundary: They tell you where you need to stop before you find yourself drained, emotional lability sets in, you over exert your physical body, you drive before capable, you do damage, etc. 

10) Acceptance 

• Does not mean giving up! - Accept where you are so you know your limits for your own safety. Reset the bar constantly to move beyond. 
• Change happens: your brain constantly rewires itself, relationships come & go, you may lose and find yourself over and over again. It's all okay. Change is the constant! Make it work for you. 
• There are NO RULES - regardless of what doctors might believe. 
• "No" is not always the final answer. 
• TBI/PCS does not define you. 
• Others will not understand. It hurts. Let it go what you cannot change. 
• Others will want you to be who you were before. Life experiences change us, we cannot go back. Move forward even if others cannot. 
• Education on TBI/PCS is needed - become an educator. 
• You might never get the life back you had before PCS. Make a new one that suits you. 
• Anger can be a great motivator - use it constructively while not lashing out at others. 

While long, I hope my experiences can help another. Best wishes on your recovery.

 ~Kristy