Fish Don't Have Feathers

I have a TBI.  in November of 2017 I was involved in a highway motor vehicle accident.  As a result, I got a very small brain bleed-only about 8mm.  It was just to the right (I think) of center.  What this means is, I had  a brain hemorrhage is bleeding in or around my brain. It  a lot like what happens when you have a stroke. Causes of brain bleeds can include high blood pressure (hypertension), abnormally weak or dilated (aneurysm) blood vessels that leak, drug abuse, and trauma.    In my case, the trauma was being bounced between two cars.

Scary. I look the same but I feel like someone else.
—Ann-Michel

I didn't notice it at first, but almost immediately I started making strange and not the best decisions.  Over the course of a week or two, they tell me, I became irritable and anti-social.  I chalked that up to the horrible pain and soldiered through.  Then I woke up at 3am on my hands and knees about two feet from my bed, with blood everywhere.  Still not making good decisions, I insisted we keep our weekend plans.  By Monday my face was  purple and my doctor sent me to the emergency room.  They did a CT scan and found the little spot.  If it had been bigger, it would have killed me.  Fortunately, it was small and we took a "wait and see" approach.  It healed nicely, but the side effects linger.

I'm by no stretch a "spring chicken", but I'm not even 60 yet, but I felt like I had Alzheimer's.  My memory was spotty, even about thing that happened earlier in the same day.  Computing numbers, patterns, and sequences was nearly impossible.  I couldn't focus on a task for more than a few minutes.  My personality continued to change, and not in a good way.  I was completely unable to contain anger, and I was quite content to hide away in my room all day.  People were beginning to comment.

All this time, I thought it was from the pain.  When I'm hurting, it's exhausting.  It's distracting.  I figured once the pain was under control, it would be better.  Getting the pain under control meant ingesting quite a large amount of narcotics, so I figured when it didn't resolve when the pain was more tolerable, it must be from the drugs.  I soldiered on.

Somehow, and I'm not at all certain how, I ended up with Occupational Therapy.  In just over a year I had intense therapy; almost every day there were worksheets and exercises.  I worked hard.  I pushed probably too much because there were occasional setbacks that just felt like my brain was exhausted. I tried several times to just suck it up and go back to my old life.  I managed only one presentation, but I finished writing a cookbook I had started before the accident.

Now as I approach the second anniversary of the wreck, I can't help but wonder if the residual side effects will ever completely go away. I've learned to manage quite well-I use post it notes, my Alexa, and an online calendar. My family helps remind me when needed.  I write down everything.  Recently we travelled to Ohio to see our grandkids.  About 3 weeks before we left, I sat down and made a list of absolutely everything I had to do to prepare.  It included what (exactly) to pack, the logistics of picking up my daughter across town, and researching hotels along the route.  

I can live with that, if I have to.  I can continue to write down what pill I have taken and when.  I can semi-retire from speaking engagements.  I can take copious amounts of notes.  I can do all those things and appear to be a fully functional human being.  I have been doing that for over a year already.

What people don't see is how hard I work to be "normal", and normal isn't even close to what I used to be.  I was a bright, successful, nurturing, outgoing person.  I could work (and think) circles around my peers (with a few exceptions!).  These people responsible for my recovery and any compensation I may be entitled to can only see what I am now.  They never knew the "real" me.  They didn't listen to radio shows, or attend one of the courses I gave.  They never saw me make good decisions on the fly, sometimes under pressure.  They will never understand what I was really capable of "before".

Once in awhile, they do get to see the psychological effects.  I've always had depression, but this last two years has been the worst of my life.  I'm not actively suicidal though-I have prescriptions and therapy that keep me above ground.  I am, however, deeply, painfully depressed.  I also have PTSD which although I have worked on enough to be able to drive, that doesn't include going any distance by myself or driving at night.  I rarely leave my neighborhood.  So once in awhile they see me break down.  The see the tears roll down my face.  They don't get to see that that happens every single day, at least once, and usually before noon.  They see someone battling depression with moderate success.  The need to see me blubbering like an idiot for absolutely no reason and without provocation.  Staistically, A person with a brain injury is six times more likely to have suicidal thoughts than someone without a brain injury. 

Today I made tuna salad.  That's where the title of this article comes from.  I brought all my ingredients to my desk so I could sit and put it together.  I was adding the flaked tuna and noticed a tiny string-type thing.  I pondered that, finally deciding it was probably just feather they missed when they cleaned it.

What?

It wasn't until an hour or so later that it occurred to me that tuna doesn't have feathers.

That is how this feels.  I've published two cookbooks and cooked a million meals.  I certainly know that tuna doesn't have feathers. Yet here we are.

I still do my "brain exercises" every day, but the insurance cancelled my Occupational Therapy.  After a series of "exams" they ordered done, they have come to the conclusion that I am fine in that regard.  According to them this has nothing to do with the accident, and I don't need any more OT.  Fortunately I still get psychotherapy.  Having to try to prove my issues to insurance examiners is horrendous.  Even when the damage and disability is obvious, the report always says I'm fine.  I've had three examiners, a Neurologist and two Physiotherapists, blatantly lie.  I am thankful every day for my legal team who keeps all this straight and deals with what they can.  Just the Case Manager part of that service is worth millions to me.

I don't know if I will ever be able to return to work.  The job is there, and will be, when and if I can go back.  I desperately want to go back.  I can't; at least for now.

Prognosis?  This from brainline.org:

The effects of moderate to severe TBI can be long lasting or even permanent. While recovery and rehabilitation are possible, most people with moderate to severe TBI face life challenges that will require them to adapt and adjust to a new reality.

 Fortunately, my issues are relatively minor.  It could certainly be a lot worse.  But it used to be a lot better.

If you are interested in ways to help, read these:
https://www.brainline.org/article/lost-found-what-brain-injury-survivors-want-you-know
https://www.brainline.org/article/9-things-not-say-someone-brain-injury
https://www.blogger.com/blogger.g?blogID=1112431779865529130#editor/target=post;postID=1986379539142546291
And especially this one
https://www.brainline.org/article/10-things-people-brain-injury-would-hear