What I Wish Everyone Knew About Concussions
Most of you who have been following me for a while know that I suffered a severe concussion 12 years ago when I fainted during a stand-up X-ray, smashing my head off the concrete floor of a medical facility. I had been a workaholic who was trying to control so many aspects of my life, and finally, my body literally collapsed.
I would have never guessed back in those early days that the symptoms of that concussion would have still been around 12 years later.
I initially thought of it like a flu bug. I would rest, then I could push through and it would be fine. Except I wasn’t fine. I was far from my “old self” even after I emerged from 11 days spent in my darkened bedroom in quiet with my 1 and 3-year-old daughters sent away to live temporarily at my Mom and Dad’s house. My life equation of hard work = success, just wasn’t applying here. It seemed the harder I tried to get better, the worse my symptoms became. I needed to learn other ways to navigate life that were very different for me as a busy Type A person.
My symptoms of headaches (made increasingly worse with any sort of noise, movement around me, or thinking), blurry vision that was extremely sensitive to light with a bunch of floaters (black squiggly lines) in my line of vision, physical fatigue, dizziness, short term memory issues (I could remember things from years ago but couldn’t remember the conversation I’d just have with my husband), and a really challenging time multitasking. This means even multitasking at a very basic level (for example. there was no way I had the capacity to walk and talk or take dishes out of the dishwasher and think about what cupboard they belonged in. Then if you added a TV on in the background it was really game over for me. I would be down and out for the day or sometimes multiple days with bad headaches in a darkened bedroom whenever I tried to do a simple task. Then I would feel frustrated inside as I was previously so high functioning and felt I wasn’t of any value like this, just a weight on my family no matter how my husband tried to comfort me.
My continued healing journey has been a long one. But, I have moved mountains in terms of where I am now compared to where I was. I was told by many neurologists that I would not continue to heal anymore past the 2-year post-injury mark, and needed to just make the best of where I was at. I listened respectfully to them (and I didn’t have the energy to debate them on this anyway), but inside every fibre of me was saying, “Bull Shit.” There was no way I was going to continue to live out the rest of my days in a darkened bedroom, continuing to see my children only 15 minutes a day until my brain conked out with bad headaches.
I didn’t know if I would ever return to “normal” again, but I just knew that more healing would be available. I hung onto the notion of neuroplasticity tightly, and I learned that so many experts still actually don’t know a lot about brain injuries.
The first neurologist I had waited 6 months to get in to see, told me when she opened my file that she doesn’t touch brain injuries with a 10-foot pole. For someone who was so desperate for answers, that was crushing, but I carried on and waited for yet another doctor and another. I eventually learned I needed to carve out my own path. To take in the information from the “experts” that was helpful, and put aside the stuff I heard that I didn’t believe to be true.
To date, I have been in 5 brain rehab programs in Ontario and one 7-week clinical trial for the PONS device (a small pad with electrodes on it that was placed on the tongue during therapy) in Montreal, Quebec. I now have an amazing neurologist, Dr.Christine Lay, Leader of the Headache Clinic at the Women’s College Hospital in Toronto. She has never given up on me, and I still continue to heal year-over-year.
My amazing husband Jeff passed away 4 years ago of esophageal cancer at the age of 46. This loss has crushed me in so many ways. He was such an amazing support to me throughout our entire relationship, but I can’t say enough about how Jeff was there for me and our girls after my brain injury. Now I am raising our two daughters by myself. But as I reflect on my healing journey, I know there is no way I could have done that in my earlier years after my injury occurred.
I write this blog for those who have suffered a brain injury and are running out of hope or don’t feel others understand them. Or, maybe you have recently suffered a brain injury and aren’t sure where to turn for guidance. I am also writing this for family members and friends of a loved one who has suffered a concussion. It can be a very helpless experience to see someone you love in pain and not be able to know how to help them.
I am in the midst of the very long process of writing a book on my brain injury journey. I have learned so much over the years and I want to be able to help others at a deeper level. But right now, I want to share some high-level tips to help people impacted by brain injuries.
Please note: The first step of action should always be to talk to your doctor and to advise your medical professional of any of the steps you are interested in taking as part of your healing journey.
My experience has taught me:
Rest when recovering from a brain injury is key. Listen to your body and give yourself the space you need to heal. If you had a broken arm, you would be wearing a cast to give your arm the rest it needs to heal. We can’t cast our heads but the rest still needs to happen.
“You have to learn to ride the pony before the horse,” I was told by Dr.Wanda Millard, Sports Medicine doctor, Fowler Kennedy Clinic, and Olympic goal medal champion doctor for the Canadian Women’s Hockey team at the 2007 Olympics. This means when coming out of the rest stage of a brain injury even the smallest of pre-injury everyday tasks are massive undertakings. Starting very small, and then rest is a good strategy to build upon that small-scale momentum. Think the tortoise wins the race.
Get tested by an eye doctor and a hearing doctor who has some experience with brain injuries. As a result of the brain injury, I was diagnosed with Post Trauma Vision Syndrome which meant that the connection between my brain and eyes had been impacted and was leading to some of my symptoms. This led me to participate in vision therapy targeted at my deficiencies (but it is important to do this within your symptom tolerance as you don’t want to push too hard and feel sick after each therapy session). I also learned that prism glasses with a slight yellow tint were helpful for my particular case, just to help take some of the pressure off my eyes.
I also was diagnosed by a hearing doctor with Hyperacusis. This meant that the connection between my brain and ears had also been altered. So for me, I was extremely sensitive to sound. It caused a strong vibration feeling within my eardrums and led to headaches and a feeling of being overwhelmed. Imagine having a one and three-year-old during the initial phases of my recovery. Not easy! I learned in brain rehab that having Bose noise-cancelling ear phones was helpful to use at home during periods when I needed quiet. Also, I wore these out in public to reduce the stimulation coming in through my ears. The idea is over time to try to ween oneself off the earphones, but to use them as a tool to reduce sensory stimulation overload as needed.
When I started to come out of my darkened bedroom, I wanted to watch TV again. I was advised by my doctor to start with slower-moving dramas or romances versus reality shows or higher-intensity programs. Before I suffered a brain injury, I never realized how reality television has very quick scene changes with labels flying across the screen listing someone’s name or information about them. Also as my TV stamina increased, I was advised that watching one, one-hour show was better than watching 2, 30-minute shows as that would force my brain to use extra energy to focus on two different storylines and characters.
Do one thing at a time. I share this same tip with my Executive Coaching clients, too. This isn’t just for people with brain injuries. Research now shows it is less efficient for our brains to multitask. Focus on doing one task at a time and when it is complete, go on to the next (preferably with rest in between)
Decision-making can feel overwhelming for someone who has experienced a brain injury. It is a form of multitasking as you are trying to play out all the plethora of options available to come up with your final decision. Family members and friends, advice on this…when asking a person with a brain injury to make a decision. First of all, give them two options to decide between then they don’t need to think of all the possible options. For example, do you want pasta or fish for dinner tonight? Then after asking them a question, give them time to answer. Don’t rush in to try and answer for them, their brains are trying to make new connections so give them the quiet space they need to allow a decision to formulate.
Have your doctor put in a referral for you to a hospital-level brain rehab program. In Canada, it takes a long time to get into these types of programs. If you don’t need it at the time you are admitted for an in or out-patient program, great, you withdraw your name. But brain injuries can be slow healing for some, and you may be thankful the referral went in sooner versus later.
Patience. I was never a very patient person, and likely still able to learn more on this, but healing from a brain injury requires you to be patient with yourself and celebrate the wins. It is likely not going to be a linear journey with you feeling better each and every day. You will take a few strides forward and then feel like you have fallen way back in your healing the next day and it can be very frustrating. Know that you are not alone. I have gone through this, and continue to at some level, and many others are also suffering in silence with brain injuries. Keep going!
Communicate your needs, For the family members reading this, I get you may sometimes feel frustrated, too. Your family gatherings and dynamics might change due to having a person with a brain injury in the family. My family knows no background music or TV on when I am there for a group dinner. It wastes energy to try to filter out that background stimulation. I would rather focus my brain energy on listening and talking to the people I love.
For years during family gatherings, I would have to go up to a relative’s bedroom to rest with my noise-cancelling earphones on and then come downstairs as I could to socialize for a few minutes. Also, it is hard for me to focus with multiple conversations going on in the room so we all listen to each other talk one at a time. My family also has visited with me outdoors (which has been way easier for me than indoors due to acoustics and smaller spaces). I had to communicate my needs to them, and I am so thankful that although they don’t understand what I have been going through firsthand, they try their best to accommodate my needs so that our family can still all be together.
Remember family members, a person with a brain injury isn’t trying to be difficult when they ask for accommodations. Their requests may not always make sense to you, but their brains are working at superhuman capacity to try to rewire themselves to survive in this world again. That takes a supreme amount of energy and courage. If you are asked by someone with a brain injury to make accommodations, trust that they know their needs and they want to continue to heal. Expressing your love to them is around hearing their words and just trying your best.
Create an energy journal. This is like a Weight Watchers program where you experiment to find out what your ideal energy point expenditure is each day to feel the best you can at each stage in your healing journey. So for instance, I gave myself 20 points a day. 15 minutes spent with my kids was pretty taxing on me so that took up 8 points. Doing yoga felt really good for me so that actually gave me back a point. Doing a coaching phone call took energy, but also felt good so I spent 2 points per coaching call (and could control the environment with darkened lighting and a closed door to minimize other stimulation.) Resting in the dark for 15 minutes gave me back a point. Taking dishes out of the dishwasher was 4 points. It is not an exact science, but the more symptoms created by a specific activity, the more points they are worth, The idea is to not go over your daily point allocation or you will likely not feel your best and that can carry onto your next day’s symptoms too (which then your overall point allocation for the day may have to be adjusted to 15.)
Slow down. We are moving way too quickly in our minds nowadays. There are so many things we are trying to balance and it just causes stress and brain clutter. Having a brain injury has taught me the value of slowing down. I participate in the activities and work that play to my strengths and passions. I notice things around me more. And I feel deeper meaning in life and a greater connection with others. Slowing down doesn’t mean getting left behind (which is what I feared before the brain injury). It is about being mindful of your current moment experiences and not trying to cram so much stuff into your life.
Try not to worry about others judging you. It is hard for people to know what it is like being inside your body. From the outside, you look normal. I remember spending a fair bit of time in the past worrying that I may be hurting people’s feelings if they knew I went to a certain event but then didn’t go see them, etc. Or that people may see me out laughing and acting “normal,” but they are not seeing what happens when I go home and it’s lights out in the bedroom for me with headaches. I would worry that people would assume I am healed and then have expectations I should be doing more. If you have a brain injury, your energy is precious. Try not to waste it on what you think others are thinking. And the reality is that most people are so busy, they are probably not putting as much thought into you as you think!
Mindfulness. I never set out to be a mindfulness expert, but after having it engrained in me through all of the brain rehab programs I have been a part of, I now know the benefits it brings to the human brain around greater peace of mind, focus, increased executive functioning abilities, reduced stress, and it creates a neuro environment for healing and keeping our brains feeling their best. My wish is for everyone to learn about and practice mindfulness. There is a reason I incorporate mindfulness into my Executive Coaching as well as speak to groups on this. It is a game-changer for everyone!
Don’t give up hope. I know it can be very isolating to have a brain injury. Nobody really gets it unless they experience it, and you find yourself often locked away socially from others due to symptoms at a time when you desperately need support. Remember, no matter how beaten down you might feel, you are a warrior! And, I have seen some miraculous recoveries from brain injuries. I also have experienced slow, but continued improvement every year myself. Small steps are key. Always keep hope tucked inside. It is often darkest before the light.
