Howdy Hydrocephalus

Understanding my unique gyroscope


Leave a comment

Creating My Opportunity

I have had my fair share of people questioning me about my ABI. Those people often only see me for a small amount of time. I expend a great deal of energy to act normal. Okay I know that I am not abnormal, but it takes a large amount of effort to have a conversation with people who I really don’t know especially if Chris is not there to let me know that the person does not want to talk anymore. I have come a long way but the cue reading and may not always be there. Some days I just do not have the energy, patience or gumption to even socialize. I often hole myself up at home and socialize online. 

My fingers type way faster than my trying figure out what I want to say outloud. I have spend the last three months coming up with a great business idea that I feel deep down will work awesome for me. I have applied and been accepted into an Entrepreneurial program for disabled people. I am just waiting to see when I start. I have started putting things on the computer, making my website to the point to where I will need help to finish…long way to go yet; and I have used Airtable to make an amazing spreadsheet to help with Market Analysis. I have the brains…okay I am slower at processing, have attention issues and my science side has been disrupted. This does not affect my overall intelligence. In fact, it has really increased my creative side even more than what it was before all this began. 

Lately I have had some brain function increase (okay I forget what I was going to write, but I was so amazed that some science stuff spewed from my mouth effortlessly like it was locked away and a key was finally found). But then as I improve in some areas, others started to crap out again. My short term memory has been giving me more grief. But oh well…with an ABI you body and brain may function awesome for part of the day and then crap out for the rest. It is that ebb and flow of life long recovery the frustrates others around me. I have to laugh at their frustration because they are only annoyed by little things like stuff I have forgotten. I have to live with it all for my entire life. Do you know how hard it is to maintain that smile, be positive and carry on. To take the continual words of “you must of misunderstood” (often that is the case but not always. Maybe You misunderstood me and I actually know what I am talking about) Or that you can not be productive or worthy…that you are a leach or one of those people wasting our taxpayers money. Or that people only see you for the disability and not see your talents.

I openly speak out about my disability now. I advocate for awareness and inclusion. I write about my struggles so that others who read can gain understanding or support that they are also not alone in this. 

Okay I finally remembered about one part I wanted to share…I recently watched the movie Wreck it Ralph with the kids. I wanted to watch it for two reasons. First, I like animations movies and second it has a great analogy of a brain injury.  The locked secret files (where the evil king hid the games memories that he was not really the leader) in the computer game brain are a great visual of how a brain can be after an ABI or TBI. Where information that has been stored in your brain is all of sudden locked away because the neurotransmitters have lost their connection. This connection may re-wire itself with no help; it may re-wire with lots and lots of rehabilitation or it may never re-wire. It means you may have to re-learn the information again or that you just say screw it I will find a new way to do/think/act…it is apart of the new me and you own it. 

Then the Boys and I watched Finding Dory…okay I only saw about half of it but it was the first time I had seen it. Another great ABI, TBI type of movie. I totally understand and love my boys even more because when the first time the boys saw the movie they kept calling me “Dory” in their little boy loving ways. They are perceptive and accurate and just call it like they see it. They saw me pre-surgery, post surgery in neuro ICU…at home struggling until I could get into in patient Unit 58. They saw all the other residents in Unit 58 in all shapes and capacities. They saw me when I couldn’t drive; when I could drive only to the school and back to now where I can drive to Coleman or Calgary. Next will be my trip with them to Vancouver, BC. It may take me three or so days to get there but we will!

So instead of trying to fit in….I am going to stand out. I am making my own legacy. I am going to make my family proud. I am going to make this business work for me and not just work for a business. This business is not just about money. It is about giving back and to hopefully include people who are often excluded in the workforce. I believe I will be able to help make at least one or two people feel that their lives are meaningful again. Maybe even help more. I am setting my sights high. I am positive that my hard work, persistence and re-learning of who and what I am and what valuable skills that I have to offer over the last five years has cumulated to now where I feel comfortable knowing this is the right move for me. 

I am moving forward with the new me and I really do like her alot.  This is the right time to take the risk, jump in with both feet and just go. I can create a legacy by being stagnant….especially since it is Brain Injury Awareness month and I have been overloaded with the negative news posts and research about how exponential the chances of me acquiring Alzheimer’s are after a severe brain injury. Geeze thanks alot…Hydrocephalus, ABI, Steven Johnson’s Syndrome, Pituitary, Sleep issues, Mental Health issues…hell I am not taking that kick in the pants. I know I have amazing genes on one side of family. I am living as long as my Gran Gran.  So I hope that you can discover and create your own legacy. 


1 Comment

Volunteering the Next Step

I hope to take big steps in my life for 2016. I am wanting to volunteer at the hospital to help with the recreation department. I know it will be portering and just helping out, but at least I will be able to see what the job entails and how I react in a hospital situation.

I am saying that I can only volunteer five hours max a week and those five hours can not be done in one day. So I am thinking two days a week for 2.5 hours. I know I can handle that…or at least I hope that I can handle that and maintain doing it for a period of time.

I am so excited…..BUT! I had to fill out an online volunteer application. This weirded me out. For example, it asked about me. Now what do I say there…I had no clue. I am human, female, breathing, alive but a little kooky and broken at the same time. So I scrolled down to the next question. Work experience.

Easy Peasy! I listed off that I worked in the environmental industry. Did contract management ranging from tree planting, silviculture, bridge and road engineering. My largest project was 20 million road to help get approved, built and inspected. I worked in compliance and enforcement where we inspected activiities and tried to work out problems without resorting to enforcement. However, I have and written crown council reports and investigation reports. I worked as a website coordinator for a government organization and had a budget for 120,000 for one website and 40,000 for another website. I took photos, worked with film crews and interviewed people. I also taught at MHC for one semester before my surgery as I experienced hydro induced dementia like stuff. (I still feel guilty for not being a good instructor…showing same video like three times) I loved my work. Work was my life that is the green in me coming out. I am a Green/Orange mix with True Colours.

However, after I wrote all that I was like wow…impressive but I am no longer that person. I can’t even pretend to fake who that person was. Although it never looked like I was organized, I was. I was able to problem solve and think on the fly. I could remember legislation and understand it when I read it. I could easily navigate, read maps, GPS, drive long distances, work long long hours and get up early and do it again. I supervised fire fighting crews and even been on nine wildfires as a sector leader. I could remember regular and scientific names of plants, shrubs, trees, soils, rocks etc… I was able to stand up for myself and hold my professional standards & practices even if it meant pissing people off. I was good at that . I would frustrate the bejesus out of contractors and companies because I would take any shit for their short cuts. I was a fierce one and passionate to boot!

Then it asked for education and awards. So I fill out scholarships,, awards, and my degree, diploma and certificates that i have earned. So now I know the meaning of looking good on paper and really sucking in real life. You know the potential hire that had a great resume and interviewed well but when they got into the job, they just plained sucked and you know exaggerated the truth…god I look like one of those people. How embarassing except I am not lying.

I am at a loss. How do I represent myself now? I have no clue. It almost feels like I am lying when I put down my work experience and education because it seems like so long ago. I struggle with so many things that used to come to me instantaneously and now requires time to think about thinks, process, work out, organize steps etc….

When the person interviews me for volunteering, I am really not too sure what to say. I really no idea how I will perform, if I will make it to every volunteer day or anything. It is like a blank slate in my head. I have nothing to go on.

But I need to go through this; it is the next step in my recovery to get back to the “real” world. I will figure it out and find out what the new me can do successfully at this time and find small goals to work for in the future. It is just today I once again realized the truth in what the Docs saying a seven year recovery time. I am almost half way where.

IMG_4915.JPG


2 Comments

Limbo

I just love hanging out in limbo especially since I am not supposed to drive.  I have had to rely on wonderful friends, Sara, for getting Wy to school and TKD.  I did drive once to get Wy to a b-day party and boom instant head pain.  I think it is a disconnect between brain and visual reception. We went out for dinner.  I could hear the fajitas sizzling from across the restaurant.  Then there was the grating noise of sweeping of a broken glass at the bar.  It was crazy.  I was wiped after that and had the worst case of insomnia that night.

It has been a hard week. The medication makes me feel really tired and out of it in the morning, but was still waking at night. Following directions, upped meds last night and I did sleep with only fleeting periods of waking but still felt like a truck hit me in the morning.

I have also struggled with feeling down and completely non-motivated.  I think not having the freedom of just getting in the car and going really affected me.  I know that I could take the bus…yup I could…but haven’t talked myself into doing it yet.  It would take two buses to get the boys to school.  Mmmm…still need to work myself up for that one! D & I did go out for walks, even on the cold winter afternoons, but we mostly just hung out and did nothing. I think I played army and baked cookies.

I haven’t been on the computer very much.  Today has been the most and I can feel it already.  Need to get family christmas pics edited, christmas newsletter and some long overdue blog posts done.

I am told that a bed will open up this week.  I really hope a bed opens up quickly so I get everything started.  I will then have a better idea of what I can do or not do at the moment, the reasons for getting tired and maybe some idea what all my newfound quirks are.  I need to have all the assessments to figure out if I can go back to my old job or re-structure a new career path. Having little strategies is what pisses me off the most.  Yes I know I can hang out and be a hermit but really is that productive.  Some days I feel yes that is and others not so much. Here’s hoping getting in this week so I don’t have to be in the hospital for Christamas.


Leave a comment

RAM needed Please

I must say that my memory has always been somewhat sketchy – always good for work but super bad for birthdays etc…. Then the sleep deprivation of having kids added to the mix so it wasn’t until probably about a 1.5 years ago I had noticed it getting worse.  Thank goodness for my iPhone.  I would use it for everything.  I would set my calendar timers, used the note feature to remember everything.  Then it got to the point where, I would forget where my phone was, not hear the alarms, forgot that I heard the alarm and start missing important work, school and family stuff.  I stopped using my phone and went to paper lists.  Paper lists for everything. This sort of worked for a bit too then  I would make a list for groceries and forget the list at home.  Then I would email myself stuff, only to forget about the emails.

I would make a list at work of projects that I needed to do and then forget about the list.  I would miss deadlines, forget about ongoing projects and even lost a client for my work.  Yes I felt bad!  At work, all I was doing was apologizing.  I was on the verge of getting fired – nothing I did was right anymore – I no longer was fast, accurate and field ready.  I was alive but not functioning mentally or physically anymore – basically a useless tit! I know that some people at work thought I was acting the way I was because I didn’t want to be there, I was dragging my feet on purpose. I had warned them for months that I needed help because something was wrong with me but no help came. I did not comprehend how badly I cheesed off some people at work until basically now two weeks after surgery.  I remember that at the beginning of August when I handed my medical note in at work and said I would finished the project I was working on.  I completed that and then left to be on leave.  After I received my ROE, I checked the website, because I knew they were doing changes and wanted to have a look, only to discover that I was no longer on the employee page.  I couldn’t understand why and I still don’t know why completely; but oh well that is life.  I had loved my job and the main owner of the company.  I loved how the company was originally built on a family feel approach rather than corporate entity.  I have no idea if I will be able to go back.  I know that at the moment if I had to go back to work I would be a disaster again.  It was membership time with CAPFT and I had to decide to renew my professional status for 2o13 work permit.  I had to decide if I be a practicing or non-practicing member. I registered as a non-practicing member for now.    I am not negative or upset or frustrated with anything that has happened, but now I see the situation from a clearer headspace.  I am accepting of where I am today and know only positive changes will happen with time.

I am no longer in a fog and physically I am getting stronger and stronger everyday.  I am working my brain by writing, and when I talk no one would know that I have some RAM and a few short connection issues.  My short-term memory has a lot to be desired at the moment – BBQ caught on fire – oops about those burgers; Fill bathtub and forget about it; kids request food/drink – oops just to name a few.  If you want to have a conversation with me, better get my full attention or you will have a one-sided conversation to yourself! Even if I have responded I probably didn’t hear you or processed what I responded to. I feel that I am way better than before the surgery, but still have a ways to go.  I know that when I look at words that I have known for a long time I question if they are spelled correctly because the word just doesn’t look right.  I used always ace the reader digest word definition quizzes and now…well…I tried.   I know that it gets worse as I get tired or when I get stressed or have too many things happening  at once.  I just need to step away and recharge when I feel a little overwhelmed.

I am looking forward to my brain schooling next week, and I know  that it will help me out.  So I will fill up my backpack just like the kidlets and head of to do a bit of ol’ book learn’n! I am opening up new doors  and allowing  for change and opportunities to come my way.

Raise a glass of fizzy water and toast to new beginnings!