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

Survivor Anger

I’m so angry.

I just saw a piece on tv about a guy who survived cancer and his role model, a young girl, did not survive hers.  He talked about how he didn’t have the typical “survivor’s guilt”-the idea of feeling guilty after surviving when so many don’t.  The idea of not being worthy.  The notion that you don’t deserve to be the one to live.  I had a bit of that in the year after my chemo ended and I continued to have “all clear” on my follow ups.

This guy, who is a fighter pilot and basically a (now) healthy young guy with a family, talked about how he didn’t have that.  Instead, he has something he calls survivor’s responsibility.  He believes that he, and others, have a responsibility to “live their best life” and “live with intention”.  Well good for him.  I have a big dose of can’t.

Most people would never guess I battle with depression.  I’ve been upbeat and productive most of my life.  It hasn’t come easily. There were suicide attempts, long stretches of not being able to function, and the kind of muddled thinking that comes with a mental illness.  In my opinion, the depression is/was MUCH more difficult than cancer.  Maybe that is because the cancer went away.

I will have to be treated for depression the rest of my life.  Chemotherapy, then a car wreck with some brain damage, then life threatening pneumonia all in the span of just under two years has really triggered this round of intense depression.  I know it’s chemical.  I know never to quit taking my drugs.  I’ve had years of therapy and continue to see someone since the wreck.  I don’t feel like I’m “living my best life” by any stretch.

I do think I live “with intention” in that I do it on purpose.  I could have-maybe should have-died on so many times.  Most of the time I’ve done it out of being just plain stubborn.  Choosing to do chemotherapy when you are someone with chronic depression was tough.  I wanted nothing more than to be done with this life, but I have children, and a husband, and at the time had two elderly parents.  I had responsibilities and I wasn’t going to let those people down.

I went to 6 rounds of chemo.  Getting the treatment isn’t bad-it’s how you feel afterward.  The exhaustion is incredibly strong.  The hair loss, the being careful of germs, the inability to function independently-those are the real challenges.  And it took about a year after diagnosis to even begin to feel better.  Then I went back to work, very part time, at a job I dearly loved.  Three months later I was sidelined again by a car wreck.  This time it was more than physical.  I lost my ability to make decisions, to decide value, and to plan anything.  That, on top of constant pain, have made life pretty awful from day to day.  It certainly doesn’t help make me want to live.  It definitely isn’t “living my best life”.

All this is only my latest challenge.  I’ve already survived being bedfast for six months in a body cast at about age 9.  I’ve conquered the upheaval of my parents’ divorce, relocation in the middle of high school, and failing out of college my first year.  I lived through an abusive first marriage and the death of my first child.  I lived through being a single mom while going back to school and fighting for child support and custody and being stalked by my ex.  I stared down the barrel of his .357 and did not have a shred of fear. I reinvented myself over and over and over again, always shining through.  I’ve managed to survive moving out of my country, standing up to prejudices, an horrendous couple of Presidents, 9/11 and a surprise pregnancy at 38 years old.  Then the cancer and all that came with and after that since 2016.

Far too many of my friends have died in the past three years as well.  It’s an abnormally large amount, even in numbers rather than percentage.  Then my dad died, and I’m still “getting over” that.  Talk about abandonment issues! 

Good things have happened as well, so don’t think it’s been all bad.  I have a couple of granddaughters who I absolutely adore.  I’m closer emotionally to my three kids than ever before.  I have the unconditional love of a pair of schnauzers every minute of every day.  I’ve had the opportunity to teach, challenge, and protest with and for not only future generations, but past ones.  I have a fascinating career-even if it rarely pays a dime-and a great deal of public recognition.  I get to travel to speak at conferences, write books and watch people actually buy them, and entertain friends by cooking, which I truly love.  I have gone on two fabulous Caribbean vacations at Sandals and have booked two more in the future.  I have a husband who loves me beyond reason and a very comfortable lifestyle.  My mom is still in pretty good health as she starts to see her years approach 80 and I adore her wonderful partner.

With such blessings and joy for my life, how could I be depressed?  I am depressed because it is a chemical, physical condition.  It’s not the blues, it’s not sadness, it is the inability to feel content and happy because my brain isn’t getting the glutamate, dopamine, serotonin and norepinephrine it needs.  As I have aged, the need for those chemicals has changed.  On top of that, chemotherapy for lymphoma completely disrupted my system.  My body and its circumstance has made me depressed.  We’re still trying different combinations of medications and diet to address the imbalances, but it’s highly individualized and fairly complex.  It also leaves me very vulnerable.  Thankfully, because I have also had talk therapy, I understand all this and am safe in spite of myself.

That doesn’t give me any extra motivation though.  It doesn’t let me see the benefit of quitting smoking.  It doesn’t entice me to exercise.  It doesn’t get me out of bed and into the shower.  It doesn’t let me know the reward of a job well done.  It doesn’t let me hope I will get through the current challenges.  It also doesn’t tell my brain I can’t do all of those things, so I end up frustrated and not finishing projects-even the projects I truly enjoy when the chemicals are more balanced.

I’m vividly aware that I am not living my best life.  I also don’t have survivor guilt.  What I have is survivor anger.

Why Aren't You Screaming?

As the horror in an El Paso shopping are unfolds, I've discovered I've lost my empathy.  Aside from being personally mortified to realize that, it's also an horrific sign of how the mighty have fallen.

One guy went into a Walmart in Texas and shot a bunch of people.
My very first thought was, "Well, they got what they deserved."  

Texas is an open carry state. The Texas Department of Public without a license if the firearm is not in plain sight.  Local governments can not further restrict or regulate the possession or use of firearms. Texas does not restrict NFA weapons  (machine guns, short or "sawed-off" shotguns and rifles, and grenades, mortars, rocket launchers, large projectiles, and other heavy ordnance) that are legally possessed under federal law. The state does not require background checks for private sales of firearms.

Government can issue a License to Carry a Handgun to an eligible person. The license permits the concealed or open carrying of a handgun. Vehicle carry is allowed.

Just to be clear, it is perfectly legal to go to Walmart in Texas with a rocket launcher.

Hey TX, you still loving your guns and your tRump? How 'bout you, IL, MD, OK, MS? WI, PA, DC, KS, NY? OH, NC, FL, LA, NM, CA, NV, AR, MS, CT, GA, SC, VA, KY, IA, CO, TN? And more. All mass shootings in 2019 and it's only August.

Wikipedia has a list here:   https://en.wikipedia.org/wiki/List_of_mass_shootings_in_the_United_States_in_2019?fbclid=IwAR3DSzaIg7Q7WxGoZCoGaBY7QSQq0XNWnF-qdthNaxbVbqYcbd4QnviusVc

If you have not contacted your Congresspersons, you are just as guilty as the shooters. Demand gun control. Your "thoughts and prayers" are meaningless without action. Your "right" to own anything more than one single-shot gun for protection or hunting is NOT WORTH MORE THAN THESE LIVES.

This isn't a partisan thing. ALL politicians and ALL voters have
failed.

As of July 31, 2019, 248 mass shootings have occurred in 2019, resulting in 979 people being shot. Of those people, 246 have died. Their blood is on our hands.  

And Canada, don't even be smug. We've had 7 shootings in two weeks in JUST ONE NEIGHBORHOOD in Toronto. 35 Homicides in Toronto this year. And they happen in every.single.province.

Of course I'm angry at the shooters and the lawmakers.  But if you haven't taken a very public stand against automatic weapons and too much freedom to stockpile guns, no matter what country you are in, then I'm angry at you as well.  And even more so if you haven't bothered to contact your congressional representatives.

It's well past time we strictly regulate the manufacture, sale, and possession of guns.  It's a human issue, not a political one.  If you don't agree, meet me in Texas and we'll play catch with a grenade.