Howdy Hydrocephalus

Understanding my unique gyroscope



There is a large tribe if TBI/ABI/PCS (Tramautic/Aquired brain injury, post concussion syndrom) on Twitter. We tend to like online social connecting sites becuase when we are feeling like shit, stuck in bed in a dark room these sites may be our only source of connection to the outside world. I remember, I had relied on social site for four months once. I could barely get out of bed without feeling like I would pass out.

6181aee523d4e4937731bfac6e6b48bcThere was this post “How do you cope with TBI/PCS symptoms?” yesterday. Now this may seem to an easy answer for those that are clinical…look it up on the Net and list off…rest, eat healthy, follow your medicine, blah…blah…blah. However “How do you cope with TBI/PCS symptoms” answer is not so simple. It is really a big whoop ass can of worms.

First off people who are “normal” will just say here is a list just follow it and you will get better. These are innocent, well-meaning people who really have not walked this journey before but instead are taught what to say and do.

f118d7a457ea10f91cc29d9648c1df35When you are knee deep on this new life adventure (so much nicer to write than sucky life-long condition) is to grieve. I mean grieve the loss of who you once wore. Believe me this is not easy at all. I am over three years in and I still grieve.  I still get mad and frustrated at where I am that it often clouds how far I have come.

I mean who wouldn’t want their old life back where everything was easy peasy; thoughts swift & quick; anyltical skills and crital thinking intact; planning & organizing there; coordination; strength; energy to work, look after family, have hobbies & social life at a moments notice and above all live pain free…But I am not that person anymore and I accept that I am not that person most of the time.

cf07f453bef187cb4c57a7e706c33b45So we have our pity party for a bit then I mentally kick myself in the ass & my drill sergeant tencacity kicks in. I mentally say suck it up sunshine; usually something about not quitting and other motivational stuff to get me out of a funk. I take responsibility for getting myself out as no one else can except me.

  1. I read motivational pictures & quotes images
  2. I watch motivational videos. Unbroken or Why do We fall
  3. I read Motivation Facebook Group Bright Side or website Elephant Journal
  4. I focus on anxiety reducing activities such as breathing. (I do alot of this)
  5. I remember I how I have come. The challenges that I have overcome.
  6. I focus on the positive. It really becomes easy after a while. For example, the biggest positive is that I get to become a new me. I am learning what I like and don’t like. I get to experience things for the first time that were old hat for me. Trying foods to see if I like or dislike etc….
  7. I move forward.
  8. But above all I am grateful. I am grateful to re-write my life. I am grateful that I have learned alot about myself with the journey. I am grateful that I am here living. I am grateful that I have found who my true supports are. I am grateful for a new approach to living. I am grateful to explore each day with new perspective (literally & figuratively). I am grateful that my kids are hopefully learning about compassion and empathy (no zombie comments lately – LOL) I am greateful allowing myself to fall & get back up again. I am grateful that I am able to express myself via writing and art (verbally and body language not so much). I am grateful for the opportunity to start fresh each day.

So really to “cope” is not simple there are many emotional and mental steps. There is a lot of time needed. And I didn’t even include all the physical, organization, planning steps that you learn via OT (occupational therapy) that help you function. This is a vast black hole of a subject that just can’t be thrown around in a black & white fashion. It is more of a comfortable grey blanket.




New Me…old me…who – TBI & the great identity crisis.

I am fortunate to be a part of a group brain injury wellness program. I am glad there is finally one in the community but I am a little saddened that it is only seven weeks long. It is weird that there is such a short time limit on it when brain injury recovery is such a turtle of a beast and recovery moves slowly.

There was a lecture on personality changes after brain injury. I think my overall personality is much the same, but there are some noticeable things that did change. I do still reflect, but no longer focus on who the old me is. I am still however trying to get used to the new me. The upside is that I get to start over and really I am only three years into the new me so it really hasn’t been to long for me to adapt. However, it is all not rainbows and happy parties, nor is it a pity party either. It is just plain weird and that’s it. It is uncharted territory as I don’t know if this is how I will be forever, or will neuroplasitiy take over and re-route neural activity over time.

Somethings that I miss about the old me are:
The energy I had,
always on the go & doing something,
going out and enjoying it,
my quick wit and sense of humour,
enjoying people,
being easy going,
love to have fun,
and playing with my kids.

The new me tends to:
Get frustrated easy,
embarassed and humiliated (less now, but I did forget how to tie my shoes, now more so if I fall),
go from patient to snapping if done too much and are overwhelmed,
stares off when can’t keep up with conversation or distracted,
don’t show much enthusiasm,
will not think things through & impulse control,
lack a sense of humour – don’t get jokes or sarcasm,
slower uptake on significance of conversation,
awareness of limitations,
seem serious because I am concentrating so hard,
feel that everything I do is for rehab purposes and forget what fun is,
and have a hard time playing with my kids.

Today, I watched the Lego Movie for what seemed like the first time. Although I know that the kids have seen it so many times that I have lost count. I don’t know if I zoned, missed legitimately, or slept through all the other times, but this time I thought the movie was funny. After the boys wanted to play Lego. I didn’t really want to but did. We build a couple things and then the boys got involved in another movie.

I continue to try to re-learn coping skills, acceptance and re-adjustment. I only hope that we as a family is muddling our way through it in a decent way.


After Brain Injury: The Dark side of personality change part one

After Brain injury: The dark side of personality change part 2

Helping Children Cope with a brain injured family member

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Land of the Misfit Toys

I found this from the last days of being in Unit 58 & thought I would post.

I think Land of the Misfit Toys is from Ruldolph the Red Nose Reindeer. I jokingly thought this as I went into Unit 58’s dining room this morning as another guest waved for me to sit down by him. I wander around the room trying to find a chair to drag over for breakfast. Holy cow – lots of mobile people in here now. You know you have been on the unit for a while when you have your “dining room gang” I don’t hang with the overly chatty crew but instead we have some conversation and understand each other’s uniqueness’, as well as, feel comfortable eating in silence because “I UNDERSTAND”. I know what people mean when they say “they have been here for five & hold up five fingers instead of saying it). I understand when we talk about our kids. I understand when someone says “it is a good dinner” & know they meant to say breakfast. I understand the effort to control a body part to put food in a mouth. I understand the effort to speak more than one word answers. I understand when you eat and leave without saying anything you are not being rude (plenty of other things going on in our heads & I do the same thing). I can understand when you speak, even though others may not & remind you where you are when you are confused. I now feel at home with this gang and can laugh at myself more

This week I have been enlightened to see challenges overcome by other people on the Unit, as well as, overcoming my own challenges. I am learning to be patient. I know not to push the driving thing now and wait until my visual stuff calms down or goes away.

Then I went home a week or a few days later – I forget. I missed the safety of the Land of the Misfit Toys when I got home. There was so much going on & a lot to process visually & cognitively; there was no routine; no working on me time – it was full on kids and family first. My meds were not working so I was contingually in pain – 24 hour headaches (doc says like migraines) & 24 hour burning/fire ants crawling on my right side.

I know I found it strange for me to be missing the safety of the Land of the Misfit Toys, but there is this grand allure of being in a controlled environment. Yes in this controlled environment we were all impacted by either spine, brain or stroke, but not so much that we should always live in isolation such as the land of the misfit toys, but are instead taught the skills and strategies to venture and make a new life for ourselves. Transition has had its ups and downs and thankfully more ups for me. I am more cognitively aware now (my mass amount of medicine working out? healing brain?). I know that inclusion and acceptance happens easily for me because I look the same. I only hope that it happens easily for everyone else who has left from the unit as well.

I know that most people look at me and I look normal – no I am not drooling at the mouth – the injury is on the inside of my head – duh! My physical stuff is minor and I work hard to keep rightside working. If you look hard I may not swing my right arm as much as my left and my right side has more dropsie moments than the left. My right foot may slightly walk different when I am tired. My right side tires out more easily and the coordination is not always there than the left. It is harder to see the differences, as I am left-handed. My speech has good days and bad days! My internal brain stuff is a little quirky. I am still learning weird stuff about myself everyday. I know that I have word and spelling issues more than before – For examply, I didn’t know how to spell drowsy and lots of other words. I now ask for the spelling or look them up. I am slower at the math stuff too, but thank goodness I have a little guy in grade one…we get to practise together! And I still can’t count backwards from 100 by 7 but I have memorized the first two 93 & 86 (had to use my fingers on the second number). The biggest thing is how fatigued I am. I hope to have the same energy as what I had before all this went down, but that may take a long time but I hope to get back to the same energy levels. I am a two time a day napper these days.

I remember that I used to pity or feel sad about the Land of Misfit Toys when I originally watched Rudloph the Reindeer, but now I have a who different perspective. The Land of the Misfit Toys serves a purpose if there is growth, renewal, skill building and hope. Hope to be accepted and included when they take the courageous steps to forge their new lives outside their little island.