Howdy Hydrocephalus

Understanding my unique gyroscope


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4 Year Anniversary

On September 4, 2016 I celebrated my fourth anniversay of my brain surgery. I thought about writing that day but I couldn’t bring myself to write. 

There have been some amazing hurtles that I have overcome in the last four years. I have become a stronger, wiser person. My brain continues to heal as I push myself. Life have become liveable and enjoyable again now that we have found suitable meds. I have overcome on the other side of some very dark questionable times as well. I held out and did not quit or give up. I have enough awareness now to be blown away. I know in my head what I have accomplished, but so many people do not because having a disability that is not visible leads to many assumptions.

I still have my sketchy quirks to work on. I notice them now more than ever. For example, my sense of time is often out and I still have not found a good calendar program that has a great nag alarm for my android phone. I still think I can remember a lot more than what I can so I decide not to put items in my calendar and of course I forget. I often forget what I promise to do…mmmm three weeks of saying I will put the boys phones up for sale and I still haven’t done it. I remember, then start and get distracted and then forget until  I am reminded. I have a hard time with conversations still. I will get nervous and keep talking and talking and talking. I often forget the clues that the conversation is over. I still have a hard time with ending a conversation. I am not too sure if the person has ended the conversation or how to end without being rude or too abrupt.

My organizational skills of planning and connecting from a to b to c to d is still a work in progress. I am not walking in a circle in my room trying to figure out what I need to do first but I will go from basement to upstairs to get one specific thing and in that two sets of stairs, I will forget what that item was. I will look around and grab something, walk back down stairs  and start working on what I was doing again until I remember what I wanted from up stairs. The process then repeats itself numerous times  or days. So sometimes getting things done is painful.

I tend to hyper-focus on new things and block out everything…like kids, meals, laundry. I bought a cricut which has been taking up all my time. I am loving the fact that I am suing Adobe Illustrator, manipulating graphics and fonts to create items to sell. I am looking forward to developing my crafty hobbies into a small biz. I am even looking into furthering my education. I am looking at my art therapy post diploma rather than recreation therapy certificate. The post grad diploma is a step forward rather than backwards with a general certificate where they want you to take their technical communications course even though I could probably teach it. How to write an email, proposal letter, make a brochure, resume….yawn. No challenge there. The only problem is to pay for my course. I have no idea what is available out there for resources to help pay.

So many steps and mountains climbed. A few more to climb but it all seems achievable now. Here is to how great and adaptable humans are. How strong we can be and how we can continue to learn on a daily basis. I am truly grateful! I am truly grateful to have been faced with all of this. If I hadn’t been challenged, I would not have grown so much. I look forward to tomorrow, the next day and to see how fare more I will come in the future. 

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Acceptance

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.

 


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Yes it has almost been a year since I took fingers to a keyboard and wrote in this blog.  I wanted to write but I also wanted to take the time to allow myself to recover.  Well of course TBI recovery does not come over night or in the first year or so.  You and your family can read the words but to fully understand what recovery means is to actually be apart of the snails pace, accept feelings of anger and frustration, accept the long declines and plateaus and celebrate the upswings!

Here is a letter I wrote to someone who is doing a photo project on brain injury and recovery:

“Hi Audrey:
 
my name is Kelly boreson.  I was diagnosed with congentital hydrocephalus after a long period of trying to figure out what was wrong with me at the age of 40.  I had ETV surgery September 2012 and went into inpatient rehabilitation at Foothills hospital in Calgary for 7 weeks at November 2012-January 2013.  I am recovery from a TBI which include right-sided weakness, executive function, head pressure and pain,fatigue and aphasia-like symptoms with stuttering quirks added to my life. I did experience a bit of right-side neglect as well.
 
In my former life I was a full-time wife and mother,  part-time environmental specialist, part-time college instructor and part-time stock photographer.
 
In my new life I have learned to be grateful of everything. Hope and Preserverance are number one for both me and my family for my recovery. I a new view for the struggles of people with dis-ease and dis-ablity. It is about adabtabilty and coming up with new solutions to do things. Rehabilitation is everyday.  I have to practice my words, think of categories of objects, think if what I am going to say ahead of time for conversations.  I am quicker at writing as my fingers and brain use different paths but computer time is limited due to my visual overstimulation. I have to exercise at a new level  – slowly at 120hb/minute. I have to practice balance, I am doing art for therapy, I am in counselling for anxiety and learning about the new me. I go to Occupational therapy to help with planning and working out steps for things.  I look normal and I am normal just a new normal with a lot of quirks! My old life seeps in and I feel that I want to take on lots and then I crash big time.  It has only almost 2 years and I still feel like a toddler in this new way of doing things.  I am not the only survivor in my family; My entire family are survivors and each day we are taking steps to survive. My life is a 5000 piece jigsaw puzzle that is a little overwhelming but slowly I am putting the pieces together.
 
This photo was the last studio photoshoot I did November 2012.  I have revamped my studio to an art room. I remember doing this shoot and another shoot where the studio lights were so overwhelming that they made me mad and I couldn’t figure out why I couldn’t get the right side of photo in picture.  So the photo is almost 2 years old.”
 
Image

 I admit that with my lack memory unless I am cued, I did forget about this blog at times but then I would have fleeting moments where I wanted to write but I knew I couldn’t. I hope to write in short spurts more often.  Out for now as I am creating a larger headache & vision going – gotta listen to the signs!


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All I want for christmas

In the dining lounge this morning, there is the television blaring with news of more funerals for the kids and adults who were shot down last week. No one here really has paid attention to what has happened. There have been a few discussions about gun control but most, I think, like myself know that it has happened, but are currently being greedy and focussing on ourselves and on getting better.

Two of my table mates who both have had strokes begin to talk about what they want for christmas from Santa. It is funny because the one person begins by saying “All I want for christmas is my left arm again” The person next to him says the same thing. Both have seen improvement in the arms in a week so they are hoping by Christmas they will have their arms back. This is the place where you can see amazing improvement in people in short amounts of time. It blows my mind! I am in awe of all the people who are re-learning way more than what I have to re-learn. The people in here are the true warriors. They have so many things to re-learn that they use to do unconsciously, but now have to make conscious efforts until they each step becomes unconscious again.

The breakfast conversation made my morning because I was still wiped from three hours of neuro psychological testing yesterday. I slept after the test, got up for dinner, then watched a bit of a movie then slept all night. Today both my eyes are giving me grief – fuzzy vision (not just my right eye); I feel still tired and have a monster of a headache. Moral of the story is that when I think too hard or do too much physical I get slammed preety bad.

At least my CT scan from yesterday showed my ventricles have shrunk back down a bit which is good! That I am just experiencing a bit of chronic pain from my head. I hate the word chronic pain; people think you are a faker when that word is used.

It is awesome that I am learning about what my brain has disconnected for my speech. Apparently, my muscles in my lips need to be re-taught how to work and release. So words that begin with W, F, V, B etc. I have been hitting too hard and my lips get tense so I stutter or hit the letter too hard. I have been learning how to breath the speak and now I am learning how to soften the words. It is amazing to see and hear it work. I know that Wy noticed the way I was saying his name, but not too many other people. It probably always sound like I was angry at him, but now I am working on saying Wy’s name properly! I am learning new stuff everyday. It is just being able to remember and coorinate it all so the techniques will work.

So what do I want for Christmas…is that everyone stay safe and healthy so they do not have to visit this place too!


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Small Miracles

So what is it like here in Unit 58?  Well the first week was intimidating and somewhat overwhelming.  This unit is a short term rehabilitation floor for stroke patients, spinal cord injuries and brain injuries.

First of all, I really don’t like hospitals – that is where all the sick people are you know!  I knew coming in that I would have to suck it up and get over being in the hospital part.  Second I was told there would be people of all abilities.  I thought I could handle it because I used to to work with people of different abilities but that was a long time ago.

Boy I had to get over my discomfort quickly.  You sit in a communal dining hall with people at various stages of recovery.  There are people who are in wheelchairs who may or may not be getting the use of their  limbs back.  There are people stuggling to eat, eating via a tube. There are people with canes, walkers and mobile like me.  There are so many things that run through your head like “feeling sorry for them, feeling uncomfortable about where to look, what to do, and getting over the feeling of that I was lumped with these people”.  Yup accepting that took a day to get used to it.

So why are other people here.  There are people who have had strokes & brain bleeds.  There are also people that have suffered just dumb luck accidents.  For example, a older man was tying his shoes at top of stairs and then fell and broke his neck. He expresses that “he is lucky not to be a quad”.  I forget the guys name that told me that and would ask him but he was transferred to an extended care place last week.  There are people who have been in vehicle accidents as well.  The youngest person here at the moment is a girl in her early 20’s and she suffered a stroke.

I know when you read all the stats about stroke victims and car accidents and every wonder if they are true. Yup they are.  Most of the younger stroke patients are woman and most of the younger spinal cord patients are guys.

I think we are lucky to have this great facility especially when you see small miricales of watching a person walk for the first time around the unit yesterday and my neighbour walk down the hall to the dining hall today.  I can not even imagine how much happiness they are feeling, but I could see it in my neighbours face.


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Grateful and a Big Shout Out!

I just wanted to give a big shout out and thank you to all those that have been reading this blog.  I have had people from 11 different countries read this blog.  I am amazed.  I know that I search the Internet every night looking for someone going through the same thing to connect with and so far I haven’t found a similar story.  I have read so many stories about parents finding out their child has hydrocephalus in utero; their emotional struggles; their child’s physical struggles once born.  Or I have read stories of older people, one step away from being put into a home & being misdiagnosed for years; to being successfully being treated for Normal Pressure Hydrocephalus and gain their life back. It has given me a new perspective on the word perseverance and strength that makes my journey pale in comparison.

September is hydrocephalus Awareness month in the United States. The Hydrocephalus Association is an amazing resource for support, stories and research. The Hydrocephalus Association is the organization that developed the only guide for the unique SHYMA group which I fall into. In Canada there is the Spina Bifida & Hydrocephalus Association of Canada which I thought would be a great resource until I received an email from the Alberta representative indicating that they only support people with Hydrocephalus as a result of having Spina Bifida; so I am shit out of luck!  Nice no other help from them or suggestions. I was ready to help support and promote, but now I feel that the Spina Bifida & Hydrocephalus Association of Canada can kiss my arse! (vent done!)

I am appreciative and very grateful of the support shown to me online and in person.  This experience has allowed me to re-introduce myself to writing again. I had moved away from writing for me to putting out technical reports.  Now that the fog has lifted, I am excited to continue writing as it is my re-introduced love and to begin to shoot photographs again.  There are a couple of contests that I would like to enter.  Once my kitchen is done, I see a stock shoot calling my name.  I am always looking for models for this – family, couple, cook etc….  I just have to get better to be able to set up the lights and move freely from downstairs to upstairs.  I can not wait! In the meantime, I have about a 1000 images to upload to edit and upload to stock – if only I could remember how to edit efficiently again.  Damn brain misfires!  I think this may be a hint for me to move from Photoshop CS3 to Photoshop 6 – dare I take the plunge to learn a whole new platform…maybe…but not in the next couple of  weeks, but soon I think.