Five Things I’ve Learned From Post Concussion Syndrome (PCS)

Friday marked my five year mTBI anniversary. It’s been five years since I hit my head playing roller derby and got a concussion (details here). Symptoms from that concussion and another mTBI haven’t disappeared. Yet. Every day from January 25, 2014 until today I’ve had to deal with physical and mental fatigue, impaired memory, and a whole lot more.

I don’t want to talk about my symptoms or injuries today. I want to talk about what I’ve learned. Perhaps it will help you. Perhaps you have things you’d like to add. Feel free to post in the comments section below. For those newly injured, check out 10 Things I Wish My Doctor Had Told Me About Mild Traumatic Brain Injury (mTBI).

Now ~ drum roll please ~ my list!

Five Things I’ve Learned From Post Concussion Syndrome (PCS)

1. The Brain Rules

I’m not talking about my mind, about my thoughts, ideas or feelings. No, I’m talking about my physical brain, that organ that makes almost all other functions possible. It wasn’t until after my first concussion that I began to appreciate how important the brain is in every aspect of my life.

That great head for numbers I use to have? Well, I still have that affinity, but I no longer have the memory to hold 132 and 259 in my head long enough to add them together. Or how about my physical strength and fitness I was so proud of during roller derby? Pretty worthless when lifting a gallon of milk gives me a headache that lasts for days and plunges my thinking into a deep fog. Or how about my innate efficiency that allowed me to work faster than anyone else I knew? Turns out that skill was based on having lots of brain power available to use. Now there isn’t extra available, so speed and efficiency aren’t even a possibility.

The brain is important. My brain and how it is functioning each day is important to what I can or cannot accomplish. Hell, it determines what I can or can’t think. So. I must make healing, protecting and supporting my brain my #1 priority.

2. Rest Is An Action Word

You think it’s easy to rest? It isn’t. Slowing down when all you want to do is live a normal life? Extremely unpleasant. I promise you.

Resting is about making active choices to support my healing. It’s not just about laying on the couch and watching the birds, although that is an important part of it. Resting requires redefining the limits of my life to reflect my current reality.

I tell you, I fought changing my expectations of myself for years. I didn’t (and don’t) want to be impaired! Maybe if I denied it long enough, it would go away. Well – spoiler alert – it didn’t. And so finally, I had to deal with it. I shrunk my life until what was expected of me, what I expected of myself, fit with the energy I had available. That allowed me to finally stabilize my symptoms. And slowly – oh so slowly – it has allowed me to regain function and increase my energy.

Every day, I actively make choices of what I will or won’t do with my extremely limited energy. Most of the time, by focusing my energy on what is most important to me, I feel satisfied by my day. I may not have control how much energy I wake up with, but I can choose what I do with it.

3. Most Things Can Wait

Turns out, most things in the world can wait. There is actually very little that can’t wait a few hours, a few days, or maybe even a few months or years. Really. Since my energy is so limited, in order to have enough energy to make the most important things happen, other things have to wait. Or, perhaps, don’t need to be done at all.

It’s an enlightening shift of perspective. I put things I want to remember to do on my calendar. If I don’t do it one week, it moves to the next week’s calendar. After something has been on my “to do” list for weeks or months I realize – I’m just not going to do this. Either it’s not important enough, or it will take away energy from what is vital to me, or it is just too hard. So I drop it off the list, forget about it, and move on. So many things clamor for my attention, my energy. If something isn’t yelling loud enough or my heart and mind don’t want it enough, I let it go. Turns out, the world doesn’t end.

4. Adequate is Enough

Pre-injury, I had high standards. High standards for my behaviors, my work, for how I showed up in the world. Post-injury, that just isn’t possible. Life is a lot more haphazard, my functional level varies widely, and I don’t have enough energy to do… well… much of anything.

So, I stopped trying for the A+. Instead, I go for adequate, for the participation award. I don’t want to waste energy trying for something that is unreachable now, or that is only reachable at the sacrifice of all my energy for the day. It’s a better investment to set the bar low enough that I can always jump over.

Post mTBI, going out at night, driving somewhere, and showing up at a mixer, a housewarming party, a dinner is challenging in and of itself. I can’t know how well I’ll function once I get there. Will I be able to follow a conversation in a room full of voices? Can I think of a question to ask a friend to start a conversation? Will I be able to access my past fast enough to carry on a conversation about this place or that place I’ve lived? Maybe, maybe not. So I decide beforehand that being there, standing there with interesting people, listening, with a glass in my hand – that is success. Someday, I will probably be able to do better. Now, adequate is good enough.

5. Life Can Be Satisfying

Not to get too hallmark greeting card on you, but this is true. For a long time, I wondered – how can my life have meaning when it is so small, so limited? My big accomplishments today were making dinner and filling the bird feeders – how does that matter to anyone? Why do I keep going? I’ve talked to other people living with brain injury, who struggle with the same sense of limitation, and learned a few things.

Human beings are adaptable. We can adapt to any circumstance, any situation, any level of impairment. When all the purposes of our old lives are taken away, we have to find a new purpose, a new way to contribute. I had to figure out one thing I could do that mattered. For some, that might be volunteering a few hours a month with hospice or teaching kids a sport. For me, it is writing. Writing is one thing I can do that matters. I don’t know what my future holds, how much I will heal or not heal. What I do know is that as long as I can contribute to the world in some small way, I feel satisfied.

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A walk in the woods at the local park helps the winter go by faster. Thankfully, spring always follows winter.

Five years, and that’s what I’ve learned… the highlights at least. I still need to remind myself of these lessons, once in a while. Take this blog post, for example. Hitting my own deadlines is a point of pride for me. I planned to finish this post three days ago – a day early – but Mary is recovering from a concussion and needed my care. Two days ago – my proper deadline – I wrote some but had a root canal in the afternoon. Yesterday – my actual anniversary – I was exhausted and worked diligently, but my brain wasn’t able to bring things into focus. Several angry exchanges and my storming out of the house led Mary to remind me, gently, it really could wait another day. Now, with more time, caffeine, and a bit more energy, I’ve been able to finish. It hurts my pride to miss my deadline, but it turns out… hey, most things really can wait.

About csequoia

I am the writer of The Foggy Shore blog, with a professional background in Environmental Science. Right now, I'm working on a book about living and healing from post concussion syndrome.
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24 Responses to Five Things I’ve Learned From Post Concussion Syndrome (PCS)

  1. Liz says:

    Thank you so much for sharing – by sharing this, you have shared a gift 😀. I can very much relate to your blog and your experiences, I’m nearly 2 years in and still learning …..
    Keep on going
    Thank you for using some of your energy to write and share this.
    Liz x

    Liked by 1 person

  2. Penny says:

    You wrote an excellent list! Especially the section about rest which sums up exactly where I am after 7 years much better than I could articulate. Thank you!

    Liked by 1 person

  3. Liz says:

    Hi
    Are you ok if I share this?

    Liked by 1 person

  4. Jena says:

    Excellent Clarity Charlie!
    Reading your experience and learnings helps me better understand my own, and encourages me to set more workable goals, and then to hold them lightly, and in spacious time frames. Many thanks.

    Liked by 1 person

  5. Alison says:

    Thank you Charlie. I’m coming up on my 3 year anniversary and everything you said about resisting rings so true with me. I have a hard time finding balance and establishing boundaries for myself so that I don’t over-do. I’m constantly testing those limits and pushing myself to do more, somehow thinking it makes me stronger. Periodically I will get smacked with a reality that causes me to reassess and the cycle continues. I’m trying to grasp the concept of being more patient with myself and recognizing how far I have come. You can imagine the choice words I had for the poor OT who once suggested a morning checklist to make sure I had brushed my teeth and washed my face! So yes, I have conquered some hurdles, yet it’s hard not to get frustrated when something else pops up. After all, someone once told me that a brain injury is a gift that just keeps on giving.

    Like

    • csequoia says:

      Hi Alison
      It sounds like you have had a rough time adjusting, just like me. I found it helped me to learn to tell the difference between what my mind thought I should do or wanted me to do, and what my body/brain actually felt like. The first had endless opinions and options about how I’ll spend my day, the second actually gives me feedback and guidance about what is safely possible. If something doesn’t “feel” interesting or fun to that physical part of myself, I know it is too much.
      Good luck in your healing. Your phrase about a brain injury keeping on giving. Funny/not funny. So damn true.

      Like

  6. Selby Minner says:

    Re definition of Self. Not easy. I saw my husband go through it as he dealt with the challenges of illness. Great blog!! My sister Jena sent me the link .

    Like

  7. Kate says:

    I’m two months into a concussion now and my world has been turned upside down. Thank you for writing about this!! People around me don’t understand- then if I’m experiencing symptoms still -they think it’s my fault- that I didn’t take good enough care of myself in the beginning.

    Liked by 1 person

    • csequoia says:

      Kate, we all have different recovery timelines. If you still have symptoms, it is definitely not your fault. Be sure to listen what your body needs, and don’t get pressured into overdoing it. It’s really hard, but resting now works in the long run. My lady got a concussion six weeks ago. Since she didn’t spontaneously heal in the first 2 wks, the next threshold is 3 months. There’s a big chance she’ll be healed completely by that point. Don’t give up hope! And if you’d like to email or video chat, feel free to contact me via my email on this site. Blessed be.

      Liked by 1 person

  8. Alicia says:

    Thanks Charlie! Great timing for me to remember and your words ring so true as always! My 5 year anniversary is 2/7 so you were actually ahead of schedule for me 😉

    Liked by 1 person

  9. Thank you for sharing! Thank you for honesty, candor, and your openness. I admire you, and I always have from the time I met you, when we were met at college. Life is weird and hard and beautiful and unexpected. I’m sending you love from New Mexico.

    Liked by 2 people

  10. Thank you for sharing, I can relate to a lot of this, I learned a lot after my concussion and PCS, it changed my life for the better.

    Liked by 1 person

  11. Pingback: Rest is an Action Word (VIDEO – TBI Rockstars) | The Foggy Shore

  12. concussedwarrior says:

    I’ve been living with PCS for a little bit more than two months now, but I know about people who became completely symptom free after six years! However, they usually went to certified concussion clinics either in US or Canada (which is unfortunately not close to me). I don’t know your whole story as I just found your blog, but maybe look into these certified clinics, if that’s possible for you, and if you hadn’t already.
    Good luck with your recovery, and thank you for writing about it!

    Liked by 1 person

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