What I want you to know

Written September 8, 2016

What I intended to post on my facebook notes but decided not too yet.

Today is the day that I share my deepest, darkest demons, stripping myself of what little dignity I have left by baring my broken and fragmented self so that people in my life can know that I am not the person they judge me to be, to give them the answers that will hopefully set everything straight in a way that makes sense for them about who they have thought me out to be. There have been several reasons why I chose not to share my issues with anyone, I don't want people's pity or guilt, I don't want to feel more shame than I already do about why I am in the situation I am in, and I don't want or need to hear opinions about what I should or shouldn't' have done to not be in this situation because nothing can change what has already been and I am focused on moving forward and finding a way to be me again.

There is no easy or graceful way to explain the injuries that I incurred which are the direct cause of my illness now. I don't know the exact number of traumatic brain injuries I have suffered at the hands of someone I loved and cared for, but I know that it was enough to alter my life forever and it was enough to destroy my brain and the functions that are imperative to living a "normal" and productive life. The simplest way to help you understand what I am going through is to tell you to watch the movie "Concussion" as it sheds light on an issue that most would like to ignore or deny is becoming an epidemic among football players. What you may not know is that women who are subjected to domestic violence and abuse fall into the same category, but we seldom hear of anyone other than  Football players and Boxers as being affected by  repeated blows to the head and the devastating long term effects. The damages to the brain tissue are irreversible and a death sentence for most who suffer from CTE regardless of the efforts made to reverse the damages. For most football players the answer was not uncovered until after death when their brains were autopsied and showed astounding similarities to a brain of an old person who had dementia. The brain had deteriorated and the areas that had been hit were shrunken and full of holes, death of one's brain while they were still living and it was the answer that explained and made sense of the bizarre and unusual behaviors and traits of someone suffering from this type of traumatic brain injury.

While each person's response to injury is different, the symptoms are almost identical across the board as each section of our brains is responsible for the same functions in everyone. My worst injuries occurred to my Right Temporal and frontal lobes though I also have what is known as Coup Contrecoup, damage to the opposite side where the blow occurred essentially killing two birds with one stone. I suffer from Temporal Lobe seizures which manifest in the Temporal lobe of the brain and migrate to other areas, causing symptoms that differ from epileptic or grand mal seizures. I refer to mine as "Episodes" and one can last anywhere from a few minutes up to my longest one of 5 days. I have no memory of them after they have occurred but can always tell when one is coming on as they have always begun exactly the same. My speech becomes slurred and slow, I become confused and will speak the wrong words in the wrong context and when I start to stutter, that is when the physical symptoms kick in. It feels like I was hit between the eyes with a baseball bat, my eyes water and I cannot keep them open, they generally droop as do my facial muscles and expressions. My entire body will become rigid and my muscles will contract, leaving my hands clenched until my nails cut into the palms of my hands with no chance of relaxing until the episode is over. The reason I know that this is the process I go through every time is because Jim was smart enough to start video recording them in the hopes of showing it to my Dr.'s and finding out what was wrong with me. The only way that I am validated on my own is when I wake up and my arms, hands and stomach muscles feel like I did a 24 hour non stop workout.

Many things can trigger an episode for me but stress is the number one way to get there every time for me. The episodes are considered Somatic which means they're a physical manifestation of a psychological and emotional trauma in which there is an overload to your brain and it has no other way to release the energy the traumas have created.  My brain is stuck in hypervigilant mode which means that my fight or flight response was bypassed too many times so my brain remains in fight mode at all times. This makes me on edge 24 hours a day 7 days a week, it is why I seem rushed or why some people say I am intense or too serious. These are all coping mechanisms and learned behavior, both of which are not easily remedied and are a continuous work in progress for me.

I am learning to roll with the changes that keep coming for me but I have yet to understand any one of them enough to make sense of things on my own without worrying about what my friends think about me. I cry on a daily basis mostly for no reason that I can put into words, but because of the feeling that lives inside me that makes me angry and pissed off that this is what is happening to my life. If I leave my house I can guarantee that at least once while I am out that I will get confused and have to pull over to figure out where I am and where I need to go. I get turned around very easily even though I am traveling on roads I have driven for years, it doesn't seem to matter at all that I should be familiar because sometimes I am not. There are times when I panic because my mind starts firing off questions like, am I driving on the right side of the road? Am I supposed to stop at a red light or do I go? What if I turn the wrong way into traffic or forget which one is the brake and which one is the gas pedal? And yes, I even get lost finding my way to my own home it happens all the time which is ridiculous but just another part of my day.   I struggle with the fact that I no longer recognize the person looking at me in the mirror and I am unsure of how to be around friends where I don't feel like they are looking at me like I am on drugs or just plain crazy because I am not behaving in a way that is acceptable or understood. I could not list all of the little things that go on in my day that are not "normal" for anyone else but these are some things that are a constant for me right now  

Memory loss and forgetfulness, problems with special recognition in both time and distance, poor impulse controls, difficulty in problem solving, inability to plan and initiate simple tasks, unable to organize things, misinterpretation of words and meanings, easily confused for no reason, "freezing in time" moments where I stop and cannot speak or move, difficulty concentrating on one thing, forgetting that I have left the water running or the fridge open, putting objects in the wrong places like milk in the cupboards or cigarettes in the bathtub, constant numbness of my body, I dissociate most of the time which makes me unaware of where i am or that time is moving, I forget names and words and recently am unable to recognize people's faces that I know, my vision is always blurry and my colors appear different than before (white looks bright yellow now and lights look indigo blue with rainbow halos around them) i forget to check my phone sometimes all day then forget that i need to call people back or check my voicemail for days at a time, i constantly feel as if I am not real or alive and that i do not exist.  

In short I wanted you to know that I don't choose to be this way, I don't think anyone would choose this. I have become isolated from people I love because in their eyes I have become this ditzy, spacey, unreliable, unreachable flighty person who is uncaring or too busy to do things with friends. This couldn't be farther from the truth, these are things I literally have no control over as they are coping methods that my brain has become accustomed too after so much trauma. It has been far easier for me to remain quiet and suffer this battle with Jim and Jacob in private and leave everyone else out of the know because truthfully, I don't have the energy or the answers to help anyone begin to understand just how much my life has changed because of traumatic brain injury. If you are a part of my life, or used to be I would want you to know that it was never my intention to become this type of friend or person, it is the farthest place from who and where I want to be and for those who knew a little about what was going on with me I can understand if you gave up on me as a person and it is ok. I can barely deal with these things and I live it everyday, I am not sure how to make anyone else comprehend the fact that my kind of illness and struggle cannot be seen by you, it is not out on public display for anyone which makes it very challenging to face those who may think I am just fine because I am not and have not been for the past 5 years. So when I have had to break plans or I don't show up when I said that I would 99% of the time it is because I was going to have an episode, one had just started, or I was at  the tail end of one and I am pretty much useless once one begins.

I want you to know that it hasn't been anything personal if you have been let down by me, once an episode begins I lose the ability to speak, comprehend words, I cannot control my muscles, I am not even cognisant that I am having one, It is like my brain pushes me out and only lets me back in when it is through wreaking havoc on me. I would choose to be with those that I love and having fun over being sick and having seizures any day of the week but I know that for you, it doesn't seem that way at all. I haven't' made excuses or reasons why I don't want to go do things or hang out I just lack the ability to manage social anxiety on a level that I have never experienced before and this can too, throw me into an episode.  If I am lucky, Jim is home with me when one starts and I make it through without hurting myself. If he isn't' then it is a good possibility that I will awake on the bathroom floor sporting a black eye after having knocked myself out on the counter, or worse that I will wake up at 4am in my car with the keys in the ignition,seat belt on and parked on the side of the road in a place I had no recollection of even driving too. That is scary for me and for anyone out there while that is happening so I try to drive as little as possible on my own.

I apologize for how lengthy this has been, but I felt that I needed to just rip the bandaid off that has been holding in my wounds so that there can be an understanding that there is a reason why I have become this person. It is lonely as hell fighting this battle and without Jim and Jacob I don't know what I would do or where I would be it gets so depressing. I know that I am not the same person anymore, that I have changed a great deal, and I am aware of the fact that because i don't physically show my illness, some people don't think that anything is wrong with me and that I am just that ditzy, unreliable and scattered person on my own accord. I told my son that it would be like taking two oranges and kicking one of them around for awhile. Compare them next to one another and although they will look identical on the outside one of them will not be when you cut them open. I t will be damaged from being tossed around, bruised and mushy. This is my brain and to not have others understand this will only isolate me further than I already am and is not what I want. I feel incredibly exposed and vulnerable after writing all of this for everyone to see but after losing one of my best friends compassion and friendship this week because of my issues, it was more than I could handle and I was tired of feeling the way I felt. I would give anything to be me again, to feel and be intelligent and not struggle so much with all of these things, but mostly I would give anything for others to not look at me or talk about me the way they do and to have you understand that I am in the fight of my life right now and am doing everything I can to help myself. If you want to be here as a support on my journey I am grateful, If you choose not to be my friend through it thank you as well for being here while you could be and I am sorry if I have let you down.

I want to tell Jim and Jacob how sorry I am that this has become their life because they choose to love me and support me. I know it cannot be easy to be with me and be forced to fight this battle too even when you don't want too. I am so sorry that your lives are affected by this and that it takes away time and energy from the things you both want for yourselves. I am grateful and fortunate that you are here to help me, thank you for trying to help me keep my dignity and my sanity while you both have given up pieces of your own. You make my struggle one that I don't have to fight alone and while you may not understand what makes me this way, you always try and you make sure that I am ok as I can be when I get lost and scared. Thank you both for all that you do and for loving me, but most of all for not leaving me to fight this alone because without you I would not be capable of getting through one more day. I love you both so much, and I am sorry that your lives have not been your own.