living and training with a brain injury

It's difficult to understand brain injuries until you have one, and it's a club you really don't want to be a member of.  It's a type of injury that is fairly easy to identify with a number of common symptoms, such as, difficulty remembering new information, difficulty thinking clearly, fuzzy or blurred vision, dizziness, headache, sensitivity to noise and/or light, issues with balance, drastic mood swings … just to list a few.  Determining the extent of damage, and it's long term effect, on the other hand is extremely difficult.  Unless you have a brain bleed, nothing is visible on MRI or CT, two of the most common methods of imagining the brain.  It's really a new frontier for the medical world.  We simply can't wait for people suffering from brain injuries to die, in order to physically look at their brain and see the CTE, or other damage that's a result from head injuries.  They're just starting to gather the data, and test how to find these problems while the person is still alive, which can lead to better rehabilitation, and change any many full contact sports/jobs.

I've spoken about my accident before, but some readers might be new or unaware.  Back in 2015, while out riding my bike, I was hit head on by an SUV.  A driver who, for some reason, decided to cut a corner and enter on coming traffic not knowing I happened to be riding in.  I've been told I was thrown a good 30, 40 feet, or more,  off my bike, and every part of my head took the blunt of that distance against the pavement.  If it wasn't for my helmet, I would not be alive today.  It was determined that I had a diffuse axonal traumatic brain injury, meaning every part of my brain took trauma, and every aspect of brain function was affected; speech, movement, memory, mood, etc…

That single event changed my life, and the lives of everyone around me forever.

That was two years ago, and here we are today.  I'm still recovering, still healing, still learning limits and how to adjust my life to accommodate my on going TBI and symptoms.

It's not a be all end all.  I've had to adjust many things, I had to relearn how to do the simplest of things, and even how to do the simplest of things differently.  I'll talk about some examples of how below.

Most people have no issues remember specifics of the previous days, weeks, or months.  If you asked me what I did a day, week, month ago before my accident I would be able tell you verbatim, would hesitate on remembering anything (at least, that's what I've been told).  Today, I need to write everything down.  I've learned, and come to term with keeping a daily journal so I can remember.  I can't rely on my memory in general, so it's a lot of writing things down, taking notes, creating reminders on my phone, entering everything in my calendar, and telling people to email me or text me to help keep my day going forward, and something to reference for when I can't remember.  A lot of people joke with me that everyone has this problem, but really they don't, and they really don't understand.  Why?  Because they haven't experienced it.  You choose to not remember, or you allowed yourself to not remember.  For me, I don't have that option, or luxury.  An event or action will happen, and the actual memory won't even be created, so it's like nothing even happened.  I didn't cause this to happen, it happens all on its own.  I'll have a conversation with my ex-wife about something.  She'll then bring something up from that conversation, or wanting to return to a topic we were talking about before, and I'll have a blank or confused look.  She'll ask me, "don't you remember the conversation we just had?", and I won't have a clue.  It's pretty frustrating for both of us, so we have the conversation over again.  There's nothing you can really do about it, other then work on your memory exercises … work that part of the brain, and hope it figures things out.  We both know this happens, and we just deal with it.  Lot's of times, she'll just text or email me, or we simply just talk about it again.  Thankfully, with all the effort and work on memory specifically, things are getting better ever so slowly.  Which is fine by me, because the alternative is pretty shitty, as people hate repeating themselves ;)  It's actually ironic, because people repeating things was a big pet peeve of mine, haha!  Damn irony!

I used to get so frustrated reading books after the accident, and for the longest time I absolutely refused to read any books.  I hated them and I was afraid of them.  Can you believe that?  A grown woman afraid to read a little book.  It's because returning to a book the next day I couldn't remember anything that was going on, or who the characters were.  So I would start the book over again.  I wouldn't get anywhere.  I would read the first chapter of over, and over again.  I felt hopeless, and it made me angry and afraid because it reminded me of the simple thing I enjoyed, that was taken away from me.  I lived that way for two years!  Despite still having the problem, I couldn't allow myself to never read a book again, or allow myself to let this aspect of my brain injury to win.  So, I just recently started reading again.  I've come to terms with my limitations and adjusted.  I just read in the now.  I don't dwell on what happened leading up to where I left off, or who/which characters are.  I just start where I left off, and enjoy what I'm currently reading to where I decide to stop for the day.  I couldn't write an essay, or tell you anything about the book beyond what the back of the book says or what happened in the pages I just read.  The approach of letting go all the weight of need to remember allows me to enjoy literature again, just in a new way.  More importantly, it works the muscle.  Just like with fitness, if you don't workout those muscles, you'll get weaker, slower, fatter, etc…

Even though the brain is not a muscle … it's a muscle :), if you don't exercise it, it will never get better, and those neurons won't start firing again.  So I started reading to workout my brain, and who knows, maybe after some time that part of the brain will get repaired and I'll started remember the books I read, as well as improving my memory overall.  One can only hope, and try.  If not, it's not the end of the world, I'll still get something out of it.

Continuing along the topic of working the brain, it's very critical for people recovering from brain injuries.  At the beginning of my rehab it was "easy" stuff like just standing up, say this word, put this card here, put this ball in this cup, count to 5, etc…  It's very degrading, it makes you feel like a child, and heart breaking, because you'll fail A LOT.  I can't count the number of times I just broke into tears in front of therapists, then then go home and cry in front of family members, telling them I couldn't count to five.  It's fucking degrading!  But, it's also SUPER important!  Depending on the extent of your injury, you may just have to learn how to do the simplest things again.  That was me, and I'm sure many others.  You really start taking a lot of things for granted that the majority of people never even think of not being able to do.  And yes, many times you get very jealous of people that can remember if they brushed their teeth in the morning without having to write it down ;).  You have to start somewhere.  But if you don't work those areas of the brain, you won't get anywhere and you'll be stuck in the state your in.  At the beginning I refused a lot, and I gave up a lot.  Telling myself that this is my new normal.  Thankfully I had people in my corner to push me to keep fighting, forced me into those rehab sessions (well didn't have a choice, because I couldn't go anywhere without someone taking me, haha), and now I'm back to riding my bike, and even finished an Ironman.  If I ignored those people and just gave up, I would probably still be laying in a hospital bed being fed and bathed by nurses or loved ones.  You need to do brain puzzles, reading books, playing the Memory game, read that list of words, do your standup/sit down exercises.  Fucking stimulate that brain and it'll start remembering how to do things.  Maybe not the same way as before, but parts of it, and that's better than nothing!

From a training and fitness perspective, a lot of it had to do with learning, and overcoming the above stuff first a foremost, and then mostly discovering your physical limits for when symptoms start to appear, and how to train around those limits, and yet still continue to improve.  I didn't have a book on the subject, or many resources, and my doctors just didn't have the knowledge to give much guidance beyond them saying "take it easy", and it was impossible to find a coach or personal trainer that understood brain injuries, and how to work with/around them.  It was a lot of trial and error sadly enough, but it mostly worked.  Let me ride for a little bit on a stationary bike…  Okay, that flared up these symptoms: dizziness, headache, blurry vision, emotional outburst, etc...  Okay, dial that workout back a little bit, and work in that zone for a while.  Go back to the level where symptoms flared up before, are they still there?  If yes, go back and keep working.  If no, then it's time to go up levels until you hit that limit again.  Rinse and repeat.  After I finish physical therapy, this was the formula/approach I took to return to, and even improve my level of fitness than before the accident!  It might not work for you, but it might be a ground foundation, or something to talk about with you doctor or rehab specialists.

It took a long time, but it shows you need to flex those muscles or you'll never get anywhere.  I went from someone who couldn't stand without falling, to finishing my very first full Ironman back in August of this year.  And, you know what?  Doing that Ironman got me to a new limit.  It took a 2.4 miles swim, 112 mile bike, and a chunk of a 26.2 mile run for my symptoms to flare up while doing a physical activity.  Now, I'll take the same approach I've been doing … dial it back, work in that level so more, and try again.  But to be fully honest, I'm kind of okay with the fact that an Ironman is my new ceiling.  I can't ask for anything more then that.  Ironman is the hardest endurance activity you can do on an amateur level (yes I know there are ultra Ironman, and ultra long distance running, but those are just crazy, haha!)  You'll find your comfort zone, when everything feels right, and no symptoms flare up.  Aim for that, and if you're find there, great.  For me, I need to feel those symptoms start to flare up.  It reminds me I still have work to do, and in a sick sort of way it makes me feel alive.

I'm not sure if I got any points across, or in fact provided anything helpful or useful to individuals suffering from brain injuries.  The only thing I can truly pass along is to never give up, do what your doctors and rehab specialist say.  Doing nothing is far worse then any exercise, no matter how degraded it may feel, will do.  Improvement is not going happen if you don't put it the work.  Your goals maybe different then mine, I'm not saying you need to race in an Ironman, or ride your bike.  Those are my passions, and I wanted to get back to what I loved.  Your goal can be as simple as getting out of bed, walking to the front door, lifting up your baby, going back to work, going to Disneyland…  Whatever!  You need to exercise your brain so it can relearn how to do things again.  That's what I want you to take away, and that's what I want to prove with my story, and that's why I'm sharing a lot about it.

If you put in the work, anything is possible.  Don't let anyone tell you differently.

Some other notes, that fit with the overall subject, but also stuff I'm still trying to learn about, and deal with; and I can't really offer any helpful advice on, or maybe I can.  Or maybe someone who is dealing with similar stuff can off advice on how they deal with the below.  That would be awesome!

There's a bunch more of just normal life stuff that you have to deal with, but I don't want to go into too much detail about them.  Mainly because there's really nothing you can do.  There are no workouts, no rehab exercises, or anything to help you improve.

One of those is the loss of past memories.  All the stuff above, wasabout the creation of and retaining new memories, and working those parts of the brain.  I'm talking about past memories, like your childhood, marriage, birth of children, distant relatives, names of grand parents, birth dates, anniversaries, vacations, milestones…  You can't simple go back in time to relive those events to create those memories again.  All I can say is thank god for pictures!  Now the pictures don't suddenly spark the memories back, it just shows me that the something actually happened, and I create a new memory base off that picture.  That's the double edge sword though.  When I recall one of those events it's only what I was able to construct from the picture, and that's it.  I really don't know if it's common of people with brain injuries to suddenly remember or never remember things from the past, but this is probably the biggest part of my injury that I'm still dealing with the most.  I'm confused, sad, angry, frustrated, and it's one of those gremlins that still hinders me from moving all from it all.

Another is dealing with random symptom flare up, that isn't pertaining to working out, rehab, or anything.  It's just stuff that randomly pops up for no reason.  I'm talking about dizziness, sensitivity to light and sound, vocal stuttering, brain lock ups, and headaches.  They can come out of no where, and without warning.  Again, I'm not talking about symptoms that flare up because of exercise, or doing rehab homework.  This is just sitting on your couch, and one of these, or all of them hit you all at once.  The last two years I've just learned on how to keep myself going when they do flare up.  Most of the time I just need to stop as much stimulation going into my brain as possible, and wait for it to pass, and it does pass eventually.  Light sensitivity, I put on sunglasses, or close my eyes.  For noise sensitivity, I either cover my ears, put headphones on, or put in ear plugs.  Dizziness, I just stop what I'm doing and lay down.  If the vertigo is lasting longer then normal, or is really bad, I'll go see some specializes in specific head movements you can do to fix the issue.  Headaches.  Well I live with a never ending dull headache since the accident.  I've tried medication, which worked, but it seriously effected my mood, and my doctor felt it wasn't safe.  So that has made me hesitant on trying anything else.  So I've learned to live with it, and it's now apart of me, haha!  I live off a 0 to 10 pain scale with everything.  0 being nothing hurts to 10 is going to the hospital.  If it hits a 5 or 6 then I take some Advil.  Can't take too much Advil for a reason my doctors told me that I now can't remember.  I think it has something to do with developing a tolerance, and no longer is effective.  I don't know, they said don't take it regularly, so I'm not.