Category: General

Ears & Parts & Brains & Hearts.

Please keep in mind that all I can speak to are my own experiences, reflections, and ponderings; these are things that ring true to me.

Before we get to ears, let’s talk about what’s between them – that big, beautiful brain that just got bonked. Mental health HAS to be one of your considerations in recovery because it simply cannot be unaffected (which isn’t to say that a hit to your mental health is always going to be obvious). You’ve literally injured your brain, the seat of who you are. You’ve wounded it physically, chemically, and psychologically. We are holistic creatures, which means that the overused cliché is also completely accurate: mental health is health.

After dozens of concussions and years of therapy, I only just grew to understand that trauma is trauma, regardless of the form it takes. Head trauma (brain injuries) and heart trauma (mental health injuries, if you will) are both trauma, and as such, it has served me poorly to not apply concepts for addressing one to the other as well. In Brain Blame Games, part two., I shared about how reframing my perspective, particularly regarding deficits and limitations, made “such a tremendous difference”, and that absolutely still holds true (6+ years later!). However, it wasn’t until yesterday that I realized reframing my thoughts wasn’t the only change that transpired; what allowed for healthy, lasting change was moving from desperation to eradicate to striving to integrate.

Earlier this week, I was conversing with a wise man I am honored to count as a friend. In addition to being a top-notch human, he’s also a skilled counselor. I asked about a book I saw on his desk and was introduced to We All Have Parts, an excellent book on “healing trauma with internal family systems.” It’s a profound yet unintimidating book, and there are lots of lovely things I could say about it, but suffice it to say that the book made an impression on me. This elegantly simple little book helped me realize that the real shift was from a mission of eradication to a desire for integration. After years of fighting to eradicate the scars and marks of trauma, I was finally introduced to the concept of integrating the messages my somatic system is trying to send into my responses.

Here’s how I see eradication vs integration:

Eradication says that trauma responses resurfacing mean you’re already drowning; integration says that trauma responses resurfacing mean your system is trying to keep you afloat for as long as possible.

Eradication provokes fear and establishes negative connotations; integration provokes self-reflection and establishes positive connotations.

There’s no real choice to be made.
Logic demands it; acceptance and partnership are key.

Consider this: my ears ring all the time now, sometimes soft like the bell on a kitten, sometimes overbearing like an 8th century church bell. It used to make me angry; suddenly, it felt like work to listen. Eventually, begrudgingly, I detected patterns and accepted that my ears aren’t ringing to piss me off – they’re ringing to get me to listen up, to pay attention.  Something is wrong; my brain’s warning light has come on, so to speak.  I learned to appreciate the tinnitus and it has become a tool I can’t live without – I have a gauge for my brain wired into my ears! Instead of suddenly sputtering to a stop, I can now better calculate my current and forecasted capacity. It buys me time and helps me make informed decisions…or at least the best, most informed decision my broken brain is capable of making at the time. I have grown from getting suddenly stuck to understanding how to use the tools I have to efficiently maintain momentum and forward motion.

It turns out my integrative response to my tinnitus should also be the modality I employ on behalf of my mental health, too. The concept of integrating these somatic messages makes perfect sense. It also makes obvious that choosing eradication has inadvertently left me unprepared and caught unaware when trauma resurfaces. As someone who craves efficiency and always strives to make informed decisions, integration then becomes the only worthwhile choice. I’m trapped in a symbiotic relationship with this brain for the rest of my life; I may as well make sure it’s effective, because it’s clearly not going to stop trying to help (whether I like it or not)!

Hello blog site, my old friend…

Hi.  It’s been a minute.

What can I say – life has been happening.  To be honest, as much as I value and enjoy this blog, I really enjoy the times when I am able to not hyper fixate on all things concussion.  It’s nice to be reminded that my identity is more than my little glass brain.  It has been almost two years since my last concussion, which is a HUGE record for me.  That said: I’ve missed this space.  I have missed exploring and learning, seeking and understanding, growing and changing.

There are a few things I already know I’m looking forward to sharing, such as:

  • Why the Nintendo Switch is my favorite adaptive game console;
  • Why Legos have become one of my go-to activities for concussion recovery;
  • Why I believe that advocacy and self-education can make all the difference in recovery; and
  • Why I am grateful that my ears act as an early warning system of sorts.

I’m sure there will be a million other things to blog about, but those are the ones that have been bouncing around in my head for the last couple of years.  This space is therapeutic for me, but I hope that it’s helpful for others as well – even if it just helps someone feel a little less alone.  So stay tuned – good things are coming soon, I promise.

PT penalties.

Hey world. Sorry for the silence; it’s been about 2 1/2 months since my last post…or, as I tend to track time, one concussion.

What’s new? I’m back in the penalty box. For those of you who don’t know about the penalty box: it’s actual name is the NeuroCom Smart Balance Master. An aesthetically-insulting contraption developed by NASA grants, it’s the least fun you can have while wearing a harness. The walls and floor move (independently, with/without one another), and some activities are paired with feedback from the screen:

I’m going to pause, allowing you to work through and beyond your jealousy.

Sounds not all that bad, right? WRONG. First of all, you’re not in this thing just because it’s the closest you’re ever going to get to riding any sort of board ever again; you’re in it because you have the balance of an octogenarian (or worse!). Secondly, you’re actually doing more thinking than one realizes, plus tracking the cursor on the screen…and if you’re lucky, you’re doing this while fighting through nausea. If your eyes aren’t tracking well and your brain has slowed to a crawl, it can be a real hoot. My body/mind respond differently from session to session; however, it never ceases to amaze me just how exhausting ~45 minutes in the penalty box can really be! Pro tip: if you’re going to hang out in this thing, make sure you have a friendly, enjoyable Physical Therapist – it makes all the difference. I’d offer mine, but I don’t share (and, let’s be honest: I need him).

I have to admit that there is one thing I really like about the penalty box: quantitative results. Given the number of concussed athletes, I doubt I am alone in my frustration with concussion recovery: so many of the therapies can seem so subjective! Some of us want numbers: we want to know exactly where we stand (okay, sway); we want to know just how productive we’ve been and therefore how successful the therapy is; we want a number to identify, compete against, and ultimately crush!

So let’s talk through some of those numbers. At the end of an assessment, the penalty box spits out a number between 1-100. The first time I did a series of sessions in the penalty box, I started at 55. After several sessions, I ended with an 89(!), and no more ataxia. A couple more concussions meant another round of sessions: started at 34…plateaued at 55. We did some old-school therapy, then tried again: final score for that round of sessions: 86.

Yesterday was my first day of this session…and I’m starting at 36. Who knows what my progress will look like this time: maybe I finally break the 90’s…maybe I don’t even crack 80. Here’s the great thing, though: the numbers really don’t bother me. Several concussions ago, I would have gotten really down – people twice my age could easily manage a score twice mine; however, one of the many things all these concussions have taught me is that a low score is just a great start for an awesome comeback…or at least that’s what I’ve learned to tell myself…

Have you done work in the penalty box (NeuroCom Smart Balance Master)? I would love to hear about your experience!

Brain blame games, part two.

So what changed? I learned where else to place the blame. Oh, not what you were expecting to hear?

I slowly began to learn that blaming my brain was simply too broad a complaint, and that it (ironically) limited my ability to be hopeful about recovery. The biggest steps forward came from understanding how injuring my brain affects my eyes. Eye dysfunction can have a huge impact in life overall! If my eyes are sending completely different reports to my brain, my poor brain is having to work so much harder, as it now has to decode the messages and figure out what is actually going on; this, in turn, has a significant impact on cognition. If my brain is having to put so much work into figuring out what I am seeing, it’s that much harder for it to do other things. For example, if my brain is fighting just to figure out which line I am trying to read in a paragraph, of course it is going to be more difficult to actually remember what was written in that line.

This was a massive game-changer! I cannot express what a difference it made to reframe the thought “I can’t remember anything I read because my stupid brain is broken” to “OT will help my eyes do their job better, so my brain can do it’s job better; maybe then I’ll be able to curl up with a book again!”. I began to feel so much less helpless and frustrated; I finally felt like I was no longer hijacked by a broken brain, and had renewed faith in all the various rehab exercises I was doing. I could now face each new concussion with the thought “such-and-such is on the fritz, so I need to check in with so-and-so (OT, PT, SP) to get a tune-up” rather than “oh great – I just screwed everything up even more, and now my brain is that much more useless”. I cannot emphasize how important this has been: when you’re dealing with injuries that already have issues like anxiety and depression as symptoms, knowing that not all is lost can make all the difference in the world. Now, when I whack my head and find that the carpet appears to be rolling like the ocean, I remind myself that I have a super awesome OT and Neuro-Optometrist, and that we will work together to make the carpet stop moving.

Does this mean everything is rainbows and roses now? No. There are still things my brain cannot do that it used to be able to…but I’ve learned to accept that, and put my energy into fixing what I can and adapting to what I cannot. It’s a process, and I still have to remind myself to choose to embrace this perspective, but it has made such a profound difference already, and I’m looking forward to seeing the impact in the future as well.

Brain blame games, part one.

If we go back about three years/nine concussions ago, we would find a very different version of concussed me. EVERYTHING was frustrating and disheartening. Occupational Therapy made me want to cry: how can a string with some beads on it make me feel so broken?! Speech Therapy was soul-crushing: no, I really don’t remember the string of words you just read to me. The list of frustrations, “setbacks”, and deficits seemed utterly insurmountable most days…and it was just the beginning.

A couple concussions later found me in an even darker place. At one point, I was seeing four PT’s, one OT, one SP, one Neuro-Optometrist, and four MD specialists. When I would check in at the rehab desk, they no longer asked my name – they’d ask which therapist I was there to see (or, on bad days, tell me which therapist I was there to see). Life outside rehab wasn’t any easier. I couldn’t drive, so I would often take the bus everywhere. I couldn’t walk a straight line so I was often mistaken as being drunk; this led to some pretty unsettling interactions with strange men at bus stops (bonus: since it was early spring, it would get dark quite early, which really adds a special something to interactions with skeevy individuals). It was ~3 months before I was cleared to return back to work, so I was bored out of my mind. I tried to find things to occupy my time; for example, I tried to learn to knit. Despite learning the absolute easiest, three-step knitting technique, I would get stuck every few minutes, and have to ask my endlessly-patient friend where I was at in the process, and how to continue. I was in my early-thirties, failing at tasks demented senior citizens could do; I was despondent.

Since my brain was what had been injured, all of this fall-out must be my brain’s fault, right? At some point, it had all become clear to me: my brain was public enemy number one, and all hope was officially lost. What I failed to realize at the time was that my biggest challenge wasn’t my brain – it was my attitude. I had no idea how to move forward, what hopes or plans for the future seemed feasible; I had no idea how to go back to simply living life.

*Stay tuned for part two.*

Life after concussion(s).

used with permission: @mollyparkerpt

I really appreciate this illustration. While I cannot speak for others, I find that it rings quite true for me. Budgeting my life has become a necessity, more so than for others. When I think through activities I plan to partake in throughout the week, I have to assign them a value – an estimate of how much energy I think each activity will require. But what happens when your week deviates from your stringent calculations, and the realities of life don’t match your calculations on paper? What happens when a family member has a personal crisis? Someone you love has a terrible accident? Work takes more out of you than normal? Allergies knock you down? What happens when there are successive weeks of this?

NOTHING; nothing happens.

Dishes and laundry pile up. Grocery shopping doesn’t happen. Your car, once pristine, slowly begins to look as if you live in it; you start to suspect that the baristas at your nearby drive-thru Starbucks recognize your voice, and you’re too tired to think anything other than “oh good, they’ll know it’s me and my order won’t get too screwed up”. Before you know it, you’re buried beneath obligations, outstanding chores, dirty clothes and laundry, a stinky dog, a needy cat…and you’re still having to divert all your energy outside of your home, to the job that keeps your bills paid and provides you with the blessing of health insurance.

Life doesn’t stop. Obligations don’t dissipate, houses don’t clean themselves, blog posts don’t spontaneously appear. Look again at the illustration above. If you’re in the top row: be gracious and kind to yourself; it won’t be this way forever. It’s my experience that you’ll either learn to compensate or begin to recover; if you’re lucky, both. Hang in there, do what you can, and ask for help if/when you need it. If you’re in the bottom row: just be glad I made it to lunch. I say that jokingly…but also seriously. Be encouraging. Pretend you don’t notice I am wearing pajama bottoms. No, I didn’t shower before we met up…but please don’t take that personally – I woke up and decided that spending time with you was more important than freshly washed hair, and it really was an either/or that morning.

Why the blog?

Why am I writing this blog? What is the point?

There are an increasing number of resources out there for concussion recovery and Post Concussion Syndrome (PCS). Over the last few years, I have combed through and read over many websites and blogs; suffice to say, there are a lot of voices out there with a lot of different things to say. Nonetheless, as I read through all of this (particularly the blogs), I noticed one voice was missing – mine.

There is a tremendous amount being published for and/or by recovering athletes, caregivers, medical providers…but in all of that, I didn’t hear a voice that sounded familiar. I didn’t hear the voice of the average person who is fighting to figure out how all of this fits into a generic routine/life; the person who wants to get back to being able to go to work or school and still have a life outside those duties…the person who just wants to know how to get through each day.

I also realize that I have a somewhat unique perspective. While concussions vary from person to person (and concussion to concussion), I have collected enough concussions at this point that I’ve been able to identify patterns/recurring issues, and have had the opportunity to work through solutions/aids/workarounds concussion by concussion.

My unique perspective also includes the hard things: the crushing sense of defeat that comes when a therapy that lead to amazing results before is completely ineffective a few concussions later; the way lingering concussion symptoms chip away at your life and spirit; the grief that comes with being told you can no longer do the things you most enjoy. I have come to understand how an invisible injury is a double-edged sword: sometimes it’s nice to be able to hide your status as the walking wounded; other times, you wish you had a sign around your neck so that people would know why you’re having to do the things you’re doing.

On a personal level, I’m doing this for myself. As an intelligent individual who has always been articulate and eager to participate in stimulating conversations, developing cognitive deficits which limit me from being able to participate in these conversations has had a tremendous impact in my life. Though it sounds like a singular issue, the ripple effect this has had on my life is astounding…and devastating. This is my way of having a voice and engaging in conversation; this is my way of still being me. My life is impacted by concussions; my choices are informed by concussions…but who I am is not defined by concussions. I am still in here, and I still have a voice.

Redefining the win.

We live in a world obsessed with numbers and results. We want quantifiable data and concrete feedback. We want to know how we measure up – we want the win.

“Focus on the positive”, “be patient with yourself”, “give yourself time”…when you’re fighting through recovery, phrases such as these can seem trite. When your brain is struggling with even the most simple, straight-forward things, how do you take a concept like patience/positive outlook and figure out how to apply it to your frustrating situation?

Reframe your situation by redefining the win, and start with the small, easy things. One task where I’ve seen this concept make a big difference is changing my sheets. I always buy my bed sheets from the same place, because they are amazing: on the inside of the bottom sheet, they have tags telling you which are the sides and which are the ends. Initially, I could only view my reliance on those tags as one more sign of my brain’s brokenness. I chose to let my frustration drain me; all I could see was how hard something “easy” had become.

Slowly, I began to break this negative pattern. Instead of being short-sighted and focusing solely on that single task, I fought to broaden my perspective. Rather than looking at the tags as reminders of what had been “taken” from me, I began to focus on what those tags could give back to me. Objects are only negative or positive if we assign them a value. It became so much easier to view them positively once I began to ask myself “what can I do with the mental/physical energy these tags save me?” An extra chapter read, a sink absent dirty dishes, time for an extra-long shower – these things feel a lot like winning!

This perspective shift may not come easily; I certainly found it to be a struggle! You may find it is not an innate perspective; for me, it is definitely a way of thinking I have to choose to have. It is so worth it, though: in the world of recovery, where control and wins seem so few and far between, why not seize them at every opportunity?

The “new normal” is out.

“I miss the old me.” I cannot tell you how many times I have said or thought that over the last few years, as my concussion count has grown and my “new normal” has changed again and again…never reverting to the normal I thought would always be.

I’ve never really liked the term “new normal”; it feels simultaneously permanent and transient. It makes “normal” sound so fluid, yet is used at times when you just want balance and consistency – you just want to know what to expect so you can adjust and continue. I’ve decided to stop using the term, replacing it with just one word: homeostasis.

Homeostasis: a self-regulating system enabling both stability and survival. It’s not an average, it’s not a deviation from the norm – it just is. It’s a system built through merging how things must be with how things are now – how to maintain steadiness despite the circumstances. It’s the struggle and tension felt every single day you spend fighting against something no one else can see. It’s that pull between never wanting to settle or stop fighting for what could be, but knowing you will not adapt and thrive until you accept how things currently are. In reality, homeostasis is constant for us all…but I think the concept resonates more deeply for some of us.

I am not an expert. I am not a trained medical professional. I am a doofus who cannot stop hitting their head on things. I am a patient who smiles and nods when called “medically resilient” yet mourns the losses that even resiliency cannot protect. I am the person whose head hides a million little cracks. I am the girl with the glass brain.