What It’s Like To Be B.I.P.

BIP Brain Injured Person

How often have I been told “you really should write a book”?

I can’t even remember or count, I just know that it has constantly cropped up in my life. “You are a teacher….. You have a gift….. You are awe-inspiring…..You make it safe to try….. You are truly an old sole…..Humanity needs you…..” “You need to write”

I hear the words and just shrug. I do not know that I am all of this. I feel I am average, I know I have a kind heart, I know I will fight for injustice and the underdog. I know I will sacrifice myself for another. I know I will stand true to my principles regardless of the cost. I know I am loyal, trustworthy, and reliable. I know I am capable. I know I will survive. I do not know that I am this great teacher that makes huge impacts in other peoples lives.

Here I sit, after half a century, finally writing. I’m not sure where this will lead, but I hope it is all that it is supposed to be.

I guess it all started with my birth. I was supposed to be a boy as that was what was wanted. I never knew it at the time, but innately I must have sensed my mother’s disappointment as I spent most of my life doing boy things and boy careers if there is such a thing nowadays. A constant struggle to prove I was worthy and deserving of love. From where I am now I realize it was a waste of my energy and youth. Having realized what inner peace, happiness and total contentment can really feel like has been the best thing I have ever achieved — not saying I manage to stay there 24/7!. If, I am supposed to be the great teacher, I hope that my writing helps you to achieve the same. I have chosen to call my book “Me and…Who? This book will take the form of many different episodes of my life all compiled under  Me and …Who? It is up to you the reader to put them in order if you want order. Me and…Who? is about me and all that I knew or thought I was, and the discovery of who I am after traumatic brain injury(s). I  was suddenly faced with having the same body, totally different eye colour, and no knowledge of who I had become. To this very day I still refer to the “old” person or the “new” person.. Every time a situation arises that this new person has not yet encountered, I can only make decisions based on my knowledge of the old person, and these of course are always wrong decisions for the new person. On the bright side of this, these situations are getting less and less as now having lived for 17 years as the “new” person I am getting a handle on who I am. I struggle even today with “liking” this new person. It is very easy to let the “old” person put her values on this “new” person, and this “new” person has no way of measuring up to these values, no matter the desire or effort. There is another bright side as well. because I have to focus so hard to do even simple things I for the most part live in the moment. this is very good as life in the moment is pretty much all good. On the humour side of all this, many people pay lots of money to be able to achieve living in the moment and here I am focused and in the moment.

This journey has found me having to learn how to do the simplest things and finding ways to do the hardest things, even things I thought were impossible. I sincerely hope that my trials, tribulations and struggle to find truth , happiness and contentment give you my reader the inspiration to climb high.  Lets laugh and cry together on this crazy journey called life.

Miss Victoria

 Grade 2   I can vividly recall one day in particular. Everyone was being rowdy, not listening and generally being as kids can be. Our teacher, was a small delicate, soft spoken Philippine who was so very young. No one was listening to her; she tried to get the class under control but to no avail. I was watching, but no one was listening to me either. Our teacher, our leader, our protector, our inspiration, burst into tears. I could feel the utter frustration, anger and helplessness. I wept in empathy as I was sharing her pain. I felt so bad for her, I just knew I needed to fix it; I needed to take care of her, to make sure she would be alright. I didn’t know how, I just knew I had to do something. I had to make her feel worthy; we were the uncaring bunch, not her. I left the classroom and phoned home and told my Mom I was bringing Miss Victoria home. After much pleading, I got the “oh, alright, but you will have to help with supper”. Back to class I raced. Miss Victoria was just wiping the tears from her face and I placed my hand in hers and whispered, “I would like to have you come to my place for cookies.” I sat for the last hour up at her desk waiting for the bell. It was the longest hour of my life.  We walked hand in hand to my house. I vaguely remember the cookies and supper. I remember learning all about her, her brothers and sisters, her home town, it was magical. She quit teaching and left at the end of the week. We wrote and kept in close contact, exchanged gifts, and visited each other for the next 45 years.

I have always been very sensitive to others energy (feelings).Growing up was difficult. I had a very hard time sorting out what was mine and what was someone else’s. Parties and huge gatherings were nightmares for me. I had no one to talk to about this. It was one of the unspeakables back then. Consequently, I spent too much time trying to figure out what was wrong with me and ended up attempting suicide. I was a pretty screwed up person. I remember how mad I was when I woke up and saw the white walls of the hospital room. I could have spit nails. “I didn’t make it!! I couldn’t kill myself right either!!!” My mom came into the room and in a very angry voice, filled with disappointment said, “I wish you had succeeded. Do you have any idea of the pain you caused your father?” About then I felt like a million bucks and was even more determined to check out of this hell hole. Later that afternoon, in walked the doctor. Much was said, but the part that I grabbed was,” You know, you can either make your life something you want to live, or keep doing what you are doing and end up dead, the choice is yours!” For what ever reason that statement stuck. I was voted the most likely to succeed by my peers and here I was at rock bottom. No support, no help, on my own.

I began at that point to heal my life. The journey included too much stuff I didn’t really want to get into, but bit by bit I chipped away. I learned so much about myself, others and life in this journey. I learned how incredibly strong, determined and courageous I am. I learned how much work self-improvement is and understand why so few take this journey.

Mad all the time

 There I was trying to make supper for some friends. Friends I wanted to see, friends I invited over and I was mad. I don’t mean a little irritated; I mean mad. Frothing at the mouth mad. Strangle some pencil necked geek mad. The rage I felt was all-consuming appeared to come out of nowhere. I felt like I was caught in the middle of a tornado. If you would have asked me what was wrong, I would not have been able to tell you. I didn’t know. I had no way to explain.

Rage, uncontrollable rage that goes from zero to plus 100 in a Mila second was just waiting to rear its ugly head. Scared the shit out of me. If you can believe it the little fireball (that’s another story) was afraid. I never knew when it would happen.

Now don’t get me wrong I wasn’t a stranger to anger. Take the time I was trying to fix the fence, for instance.

The chainsaw wouldn’t run. I cranked and cranked and finally ripped the cord out. The entire while swearing like a banshee. Off the get the tools to fix it. Finally get the cord rewound and the thing started and the phone rang. I was on call and could not ignore the phone. I tried answering the phone, but I couldn’t hear who was on it, I was too far away from the base unit. Have you ever tried walking with a phone in one hand holding it to your ear while trying to keep the saw going with the other? Saw quit, line went dead. I grip the phone trying to squeeze it to death. I crank and crank and crank. I try to smash the saw with a log that is laying there. I crank and crank. RRRRRR , I am fighting with the choke and trigger trying to keep the piece of shit running. The phone rings…… I run up the hill ( I had left the phone closer to the base unit) Fifth ring, I am out of breath, I answer, the saw quits. I want to scream. Wrong number. I want to sit down and bawl. I hate the saw, I hate the telephone, I hate being on call. I need to fix the fence. I stride back down the hill looking for something to really smash the saw with. Can’t find anything. What happened to that log you ask. Well it is in bits about 1 ½ feet long lying by the fence. Log vs. saw with raging idiot and log lost. I crank and crank. Swear and crank. Scream and crank. RRRRR I finally got it running again, I cut the tree off the fence, and am heading for the 2 branches that are on the fence. The phone rings. I stomp up the hill, white with rage and with the saw revved to the max I saw the phone into bits. Sod is flying, I am bent on destroying the phone. The saw quits. I walk my shoulders tight, my teeth clenched, just daring anyone to step in my way. I glance around, the horses, dogs and cats are all observing from a distance. I get the hand saw and sledgehammer. I walk back to the saw and proceed to smash it to bits with the sludge hammer. I feel good. The tension is all gone. Using the hand saw I finish removing the debris from the fence. Whoooo!! Walk back up the hill, crawl under the electric fence, the fence hits my head. I am knocked to my knees. My room mate hands me the sledgehammer and I burst out laughing. The difference is that through this whole rage attack I felt in control not like now.

It has taken me the past 12 years to finally figure it out. I was mad because:

I was trying to hurry

I was trying to do more than one thing at a time (multi task)

I was having trouble focussing

I was trying to stay on task

The cat and dog were moving around and causing a huge distraction

I was mad I did this too myself ( invite)

I could not bear any more noise or distraction

Too many things were happening at once

I wanted to hide

I was tired

I felt trapped

I am not having fun

I wasn’t ready

I didn’t know if I added the sugar or not…

I had no sense of smell or taste, I couldn’t tell anything

I finally processed a conversation a week or more old only to realize I did not like how they spoke or what they said to me.

Living with a moderate traumatic brain injury has been a learning experience. A journey that is not for the weak. I live my life enjoying the moment while avoiding, when at all possible, the triggers that make me mad. If it can’t be avoided, I have strategies for keeping the rage at bay.

I let my partner do all the grocery shopping. Saves lots of people from ending up in the orange bin.

If I must grocery shop, I go early in the morning when the store is mostly empty. I make sure I am not in a rush. I look at the floor until I am in the general area of what I am there for. ( Keeps down the stimulation- helping with fatigue) I block the isle so no one can walk in front of me causing distraction. (Helps eliminate flash anger episodes) If at anytime I feel any agitation I leave the store.

I cook very basic. I make my own breakfast. May or may not make myself lunch. I make supper which is a huge salad and meat. Every Monday I cut up assorted veggies for the week. Each night a huge handful of organic greens go on our plates, topped with veggies, nuts and feta cheese. Any more than this and I need time to plan and organize.

The things I make for company now are all things that I can make in steps. For example, if I was going to serve mashed potatoes, broccoli salad, roast, and a desert I must have at least one week to prepare this meal.  Monday- shop for the ingredients & grate the cheese, Tuesday, cut up the onion and broccoli, Wednesday, fry the bacon, Thursday make the dressing and peel potatoes. Friday mix it together and cut up fruit. Saturday whip cream for fruit and cook potatoes and mash. Sunday guests are coming. I cook a roast, heat mashed potatoes in oven. Serve with broccoli salad and fruit with whipped topping for desert.

If I must work on anything requiring concentration, I do it when I am alone, no music, no noise, no TV etc. If I cannot be alone, I wait till my partner is outside or is staying still in the house. I unplug the phone. ( Wise choice)

I guess as humbling as it is,  I should make it clear that for me there are NO TASKS I can do without that task taking all of my undivided attention. I cannot wash dishes and talk, I can not wash dishes and daydream, I can not wash a dish and remove my concentration from that dish until it is in the rack other wise, if I even glance away I will drop the dish.

From my observations and interactions with others, I am not alone, when it comes to how we must function. Brain dysfunction can come in many forms— traumatic brain injury, stroke, haemorrhage, blockage, dementia/Alzheimer’s, high fevers etc..

If you want my help on a task  the following must be adhered to:

1) You must be willing to give me one task, and only one task. EG. stack those boards right here, like this. When you have all the boards stacked, come and let me know.

2) You must never change your mind midstream. Doing so will short circuit me, and I will be done for the day. This is so embarrassing for me, and I feel so useless when this happens, but I can tell you all the effort in the world has not made a difference here for me.

3) You must be willing to stop what you are doing should I need to ask a question, I am unable to do anything until the question or problem has been solved.

In the event, you give me a task, and I am to complete the task, you cannot, must not, ever come to where I am working and start helping, unless you ask me what you can do. WHY? If at anytime the sequence in how I planned is interrupted or changed, I can NOT return to the plan. I am now completely immobilized and will require step by step instruction in order to finish the task.

I have the complete understanding of what is happening to me in these situations, but I am absolutely unable to recover instantaneously from them. I have no words to describe the frustration this causes me and those around me. Trying to keep a healthy confidence, and my ego from going into hiding is very trying.

Over the next while, I will write about me and the telephone, the shower, money, bikes, horses etc. I will also be uploading some cartoons I had a friend from college ( Paul Bourke) do for me quite a long time ago. One of the cartoons is a caricature of me. I named her BIP (Brain Injured Person)

I hope you enjoy them.