Howdy Hydrocephalus

Understanding my unique gyroscope

Growth

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At the end of 2011 and through 2012 until I was diagnosed with Hydrocephalus was heartbreaking, confusing, as I lost my facilties with reversible dementia, my body strength with my right side going numb, fluid coming out my ears at night and nose during TKD and running. The initial lack of support from people due to the fact that everyone thought it was just a mid life crisis or was faking with my right arm not working properly and right leg dragging; fatigue; memory isues and neurgentic stutter.

After diagnosis there was relief that I was not losing my mind. I look back now and there was a cognitive break in awareness and understanding the severity of my brain and body. I had no fear of surgery and was hell bent on getting out of neuro icu and home that I was the wandering patient. Determined to pass all test to go home.

Then there was optimism of recovery at the Brain Injury Clinic. Being told not to drive….pshhh…whatever. I drove until my Brain Dr. called to let me know there was space for inpatient in Foothills. She gave me crap for driving. I thought she was crazy…I could drive no problem. I only had energy to go up and down the hill to drop my kids off at school anyway…my new visual world was almost like a surrealist painting, swirling, motion and blurs in a constant movement on hyper drive volume.

Inpatient was amazing. I recieve physical, recreational, cognitive, speech and life skill re-training.  Had to re-wire the zombie. I was alive but my ability to communicate was limited. There I found out that I had minimal Affect…thus no driving…if my Dr. had only explained that.

During the first three years, My hubby and I were in denial that there would be a full recovery. It through both of us for a loop as we slowly realized that no not a full recovery to the old me but a continual recovery for the new me. Let me tell you…yes there is a fulll on grieving process for this. You question your being…burden…useful/useless…where do you go when your entire being has been smushed in that damn brain. Well you can roll over and say fuck it – off yourself…drink…smoke meth or other drugs…run away and become invisible or try to pull up your big girl pants while saying suck it up sunshine and move on.

The moving on process is the most frigging frustrating. It is not like you will just get healthy, come to a finish line and say Hey I am done with a pat on the back and participation ribbon. Hell no. This is uncharted territory and you better be in it for the long haul. There are many hill climbs…some are easy….some you are stuck on a ledge for a long time…there are rockslides and tumbles down to the bottom…only to start over again. Then there is success you reach the peak, plant your flag only to look forward to see endless more mountain peaks. So you decided do I go back down and start the new climb or stay put and be happy/angry/miserable/positive/content/pissed…the choice yours to make.

I have learned to keep going even when hanging on by a thread, dead dog tired and feeling alone. Sometimes is for me, somtimes it is my pure red-headed viking stubborness, sometimes it is my family, sometimes it is for friends, but I stumble forward, backward, upside down, or sideways but I move and often it clicks together. The recovery process is not a straight line….it is a wacked out angry scribble drawing that doesn’t make sense at the time but when you pull it out later you see what makes sense in it.

I have found a new me. I am not completely new, there is some old me still mixed in with my wacky and wild new me. Most days I embrace and accept my quirks…hell there is no on this earth like me. I have found new meaning, direction, tribe and currently working on building my community.

I have been giving an opportunity run a volunteer peer art expressions group. We had our first meeting last Wednesday. I am enjoying the creative sharing and strategy sharing for all your challenges we have been faced with. I think with our digital age, we tend to minimize sharing and connecting and supporting a people who are needing help. Often people put the blinders on and ignore the fact that we are broken crayons but we all can still colour. This happens so much for work. Company’s mostly hire full time. I will never be able to do that. I think my energy levels and my time requirements to keep my body working will allow me only minimum part time at the most.  I am super excited to share my experiences and hope to bring  support to others who are at different stages of their chaotic life changing journey. So my Community growth so far for this year is being involved with this. I am so grateful For Medicine Hat Alberta Health Recreation Services for coming up with the idea and allowing me to participate.

I have gained strength mentally and spiritually. My physical side of me was still lacking. Since December 2017, I made it a priority to get my physical me into alignment. It has been a challenge for me not to push too hard. I still had days where I thought I could be like who I used to be and had to recover, but not as many as previous attempts. So my big growth and accomplishment physically so far in 2018 is me running the 3km Rattler Run. It was the 2012 3k where I came 3rd when my entire right-crapped out and went lazy, funky and irradict because of the pressure in my brain. Not a stroke, but pressure related damage That I have worked hard to minimze. If I don’t do my rehab exercises my brain will get lazy and then my arm and leg gets lazy again. Now it really only comes out when overwhelmed or overtired.

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The Rattler Run theme this is year is so appropriate. I am running for me! Whether you are on a health journey too or just an average joe happy, sad, going through other chaotic life events….I challenge you all to challenge yourselves. Let me know what you are doing.

Cheers,

Kelly

 

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