Brain Overload

“You mention in your book that you’re sure repeated head injuries where one of the factors that lead to your Parkinson’s disease.  As a cyclist with a recent traumatic brain injury and the daughter of a man with young onset Parkinson’s, I’m curious, do you know of any research that supports this and shows a connection between the two?”

What followed was a long awkward silence as Davis Phinney tried to find the words to answer my loaded question.  When he finally spoke, he said one simple word, “No.”

For five months, I’ve been searching for an answer.  Countless hours have been spent online combing through neurology and sports injury publications to no avail.  That is, until yesterday evening.

Through a post made by Saul Raisin, I discovered brainline.org.  The site is dedicated to those living with traumatic brain injury, their family, and friends.  When I had some free time, I explored the site and found some very interesting information.  Two things in particular stood out to me. 

The first of which was a link to an outside article titled Traumatic brain injury ‘may lead to Parkinson’s’.  Wow, I finally have my answer and it’s certainly not the answer I wanted.  Only time will tell, but knowing this didn’t stop me from reaching a point of overload while reading the article and browsing other parts of brainline.org.  Having spent the last 20 years watching my father’s health deteriorate due to his PD, I’ve become more frightened of being diagnosed with PD than I am of being diagnosed with cancer.  They can cure (many) cancers, there is no cure for PD.

The second piece that stood out was an article called Lost & Found: What Brain Injury Survivors Want You to Know.  It pretty much sums up how I feel and what I’ve wanted to tell people, but I haven't been able to put my feelings into coherent words. 

There are so many times that I feel like I’m giving up because I find that I just can’t work anymore.  By the end of the workweek (or in some cases, the workday), I feel so mentally fatigued and overwhelmed with things I have to finish, that my ability to follow through with tasks evaporates and I shut down completely.  Since the new school year began, I’ve gone from hardly sleeping at all to oversleeping in the morning (I can’t remember the last time I slept through the night though).  As a result of being tired all of the time, my concentration levels are ultra-low, which only serves to make matters worse.

The challenge now is going to be getting my coworkers to understand that if I leave early, I’m not avoiding my work.  If I don’t volunteer for extra duties, it’s not because I’m lazy.  If something isn’t done in time, it’s not because I’m apathetic.  It’s likely because I’m feeling overwhelmed.  Each day is a struggle just to get through my immediate responsibilities with my students.  I simply can’t take on any more responsibilities or pick up their slack as I did prior to my accident.  I’m putting in the 100% effort that I’m capable of at this time.

I just wish I wasn't so uncomfortable that my 100% isn’t the same as it once was.

Recovery at a Glacial Pace

In a way, that last blog post was a bit cathartic.  I got some things off my chest and hope that some can learn from it whether they’re recovering from a traumatic brain injury or know someone that is.  The most important thing you can do as a friend or loved one is to understand that when someone has any type of brain injury, they may not act like themselves.  Instead of getting angry and cutting ties, talk to them and offer support while they’re working towards recovery.  They may not always listen, but it won’t be that way forever.  The last thing they need is to feel alone and abandoned by friends and loved ones.  Both parties will be stronger from the experience.

That being said, I’m slowly recovering from my recent episode of severe depression.  I’m not out of the woods, but I’m no longer wallowing in self-pity on a daily basis.  There are moments of emotional pain throughout the day, but my spirits are more easily lifted and I pull out quickly until the next thing goes wrong.

For the most part, what has been pulling me out this time around is throwing myself back into work.  The moment the first student walked into my classroom a week and a half ago, I lit up.  I felt like a different person – someone who is valued and needed instead of an annoyance to be cast aside.

My job is one of the most important things in my life.  It’s who I am, my identity – I’m a teacher.  The feeling of being appreciated by students and parents is one of the most heartwarming feelings I’ve ever experienced.  My group this year seems to be exceptionally warm and I’m getting word from other teachers that my students absolutely adore me.  The feeling is certainly mutual.  The only thing I can imagine that would rival this would be being deeply in love and being loved in return.  (But then, I have no experience in that department, so I can’t say that for certain.)

I’m still getting in some riding (in fact, I rode yesterday) and I’m probably feeling stronger on the bike than I ever have.  I think those 30 lbs I’ve lost since the accident account for some of that.  I’m supposed to be training for Levi’s GranFondo, the medio route this year, but the set backs I’ve experienced during my recovery are making that seem unlikely.  I suppose I’ll make the call when I get to Occidental after that first climb.

In related news, I’m considering taking yoga or pilates.  The hope is that it’ll help me improve core strength.  Because I’m still experiencing vertigo, I decided that taking a class might also be a good way to retrain my brain in order to regain my balance.  I suspect that a class will also be good to combat my depression and manage stress.  Problem is, I’ve never taken yoga or pilates and have no idea what to expect.  If anybody has an input for me on the subject, it would be much appreciated!

Still Fighting After Five Months

There is nothing about this post that is easy to say or admit, but I feel that it needs to be said because I’ve come across some people recently that just don’t seem to get it and I fear that I'm damaging relationships that are important to me.  Please be aware that I'm not looking for pity, I'm looking for understanding and patience.

At the time of my accident, I knew very little about traumatic brain injuries.  Never in a million years did I ever think that recovering from one would be such a great challenge both physically and psychologically.  Every injury is different depending on the part of the brain that was injured, and therefore, every person’s recovery is different.  One thing that seems to be in common is that it takes time to heal.

In my particular case, the psychological effects of the injury have taken a rather large toll on my life.  My personality has changed and my behavior has changed.  Social interactions are particularly difficult because I sometimes say or do something inappropriate or in some way odd.  I’m fully aware that I do certain things, but it seems to be after the fact that I realize Oh, I guess I shouldn’t have said that because it was kind of rude.

I’ve recently began to question the direction that some of my social relationships have taken since my brain injury.  A few friends have pulled away while some have gotten closer to me.  As a single woman with no children and a family that lives far away, my social relationships are very important to me.  There have been times when I sense a relationship slipping away and it’s as if I’m desperately trying to hold on.  I get the hints that I’m not wanted, but I can’t seem to let go because I’m so afraid of being alone.  I feel that I’ve become selfish and overly needy and it’s as if I’m driving a wedge between my long time friends and me.

As some of this has become apparent to me over the last several weeks, or month, whatever, I’ve slipped into depression.  I’ve fought it off and on during my recovery, but the last few weeks have probably been the worst in my life.  This isn’t uncommon for people who have a TBI.  I’ve often wondered if I was suffering from depression occasionally for many years.  However, this is different.  This isn’t depression where I feel sad for a few days because a few things went wrong.  This is completely debilitating depression that lasts day after day.  There have been days when it’s too much effort even to get out of bed and I’ve lost interest in most things I once loved.  I haven’t been able to eat, sleep, or focus on tasks.  I cry every single day and it’s not always just a few tears, it’s sobbing.  The pain is so intense at times that I become willing to go to great lengths to make it go away.

Unfortunately, during these times I sometimes act in a manner that’s even worse.  I’ll say or do things that are, quite frankly, ridiculous.  Friends will say something to me later about what was going on and I don’t always remember what I said or did.  In fact, more often than not, I don’t remember details of what happened.  For example, last week might as well have not existed.  Sure, I went into work, but I wasn’t at work.  I had lunch with a good friend, but I have no idea what we talked about.  Same goes for phone calls, emails, texts, tweets, Facebook status updates… it’s all a blur. 

I’ve had people interact with me that are clearly annoyed by my behavior, and the first thing I wonder is what I did to make them feel that way.  It’s obvious that I’ve done something, but I don’t know what.  I end up feeling hurt and rejected.  I’ve finally reached a place of feeling so lonely, inadequate, and pretty much worthless, that I’m starting to not blame people for wanting to cut ties with me.  If I met me on the street, I wouldn’t want to be my friend either.

While I’m seeing a psychiatrist, it’s not enough.  A dear friend reminds me frequently that this kind of injury takes time and I’m just an infant in the recovery process.  I’m not going to heal overnight and I should stop expecting myself to wake up one day and suddenly be the person I was before the accident.  Having a brain injury isn’t like breaking a bone.  It could take years for me to regain control of my behavior and emotions.  This scares me, but I have to accept it and friends need to understand that there isn’t any magic solution to speed the healing process.  It is what it is and will get better in time even though I sometimes think I’ll never be happy, loved, wanted/needed, or valued again.

I want to point out that some of my friends have been incredibly supportive during my recovery process.  In particular, Chris, Emily, Elizabeth, and Saul have been there for me regardless of how poor my behavior is.  They remind me that they’re available to talk no matter what.  I don’t always take them up on their kind offers, but it means the world to me that the offer is there in the first place.  I will forever be thankful for their friendships and understanding during my long road to recovery.