an excerpt from It Sucks Being Brown in a Reservation Border Town
Chapter 1: My TBI
I love this concept of masks, because I am still healing, but I do not want to read this outloud to the group at tonight's Traumatic Brain Injury event by me because it’s still too emotionally close and I really do not trust people like doctors, social workers, counselors who might be read this. So very few really understand what it’s like to have a damaged brain, are judgmental and I do not want any more of my freedoms taken away from me. I am doing very well now, and would like to keep my privacy until I can trust again.
In 2014 I had an official diagnosis that was a correct diagnosis for issues I've had my whole life. I have had trouble concentrating, sitting still, interrupting people when talking, tapping my feet or fingers, sensitivity to rejection, and trouble getting started or finishing things anything. So for over 20 years I was on medications that had terrible side effects and did nothing to really help me. I got a diagnosis of ADHD and my life changed completely.
Suddenly I knew what it was like to feel normal I could wake up in the morning exercise, organize my day, have everything ready. I wasn't forgetting or losing my keys, my phone, or important documents. I was remembering appointments, deadlines, and my mind suddenly didn’t feel as if I was in a fog and it was wonderful. I was a rock star at work; my projects were organized. I was on top of everything, ready for meetings, prepared for future projects and was very happy to have a fun job, but was excited about moving out of state to start a new chapter.
I planned on moving to Boston/Cambridge area and taking my son out there to explore University life and enjoy a different cultural atmosphere. I had my house completely empty --all furniture was moved out it was clean and on the market ready to sell.
On July 4th 2015 my whole life changed dramatically again. If I told you that my TBI occurred from a car accident from a hit-and-run that left me in the ditch bleeding until I passed out in front of my young child, how would you feel? It be very sad to hear. But I acquired my TB I from my fiancé, and I believe that the care received in this manner is shall I say different, maybe its just my experience.. On July 4th we had a couple beers and it was getting late I want to go to bed and didn’t want to drink more than 4, so went to my bedroom
My fiancé came in and said “you don't love me anymore” and the next thing I knew my body was being thrown all around the bedroom. Everything was spinning. He hit me all over my head, and grabbed me by my hair punching me in the temples and my face. I was in complete shock because he had a 100 pounds of muscle that I didn't and he had never been violent towards me in the 5 years we were together. It was surreal and yet here it was happening and I was so scared and I didn't know how long it would continue.
I'm not sure how long he punched me but when threw me on the bed and jumped on my chest choking me, I was screaming louder. he put pillow on my mouth and face and suffocated me until I was unconscious. I don't know how long i was out but I woke up sometime in the middle of the night, saw him in the living room, hands shaking, I grabbed my keys and grabbed my son and drove out there. I didn't know what to do because I was too scared to think rationally. I was in shock. The whole next day completely in shock I talked to a coworker and she said I really needed to press charges and hold him accountable, and go to the emergency room to be seen right away.
What should have occurred that night is my neighbors who were living very close by heard all of this. They could've at least come over and checked on me, try to stop him when I first started screaming for help, or just to see if I was still alive. But they didn’t even make an anonymous 911 call and they knew I was getting beaten up badly. That was probably the hardest part about going through the assault, screaming for my life, terrifying my 6 year old, left for dead and the people who were always friendly towards me, knew me, knew my family didn’t care enough to even call for help and allowed my son listen to all of this so scared in his room wondering what happened to his mom and what was going to happen to him.
I won't get into all the details about how awful I was treated just by being assaulted in a domestic situation, but let me just tell you that when a head injury occurs because of domestic violence the victim always gets blamed and there's never a fair amount of attention given to their immediate medical needs or psychological needs when PTSD strikes. Somehow in some people's heads, they think that person deserved that beating and it’s very sad because I did finally go into the hospital and they only did a quick X-ray and sent me home with pain pills and said I'll be fine and I thought OK I'll get over this and after move on. moving on was the most difficult mental and financial challenge I've ever encountered until that point.
1st thing I notice says besides the pain I was having nightmares every night I couldn't breathe. I would wake up at 3:15 in the morning so scared looking around wondering as he coming after me again. I went to the police and after about a week, they did finally decide to issue an arrest warrant. immediately I got threats from his family. I found out after I was beaten and suffocated that he did that to his previous girlfriends and then I understood why it was important for him to keep our relationship a secret and that was the red flag that I overlooked because I was head over heels in love with him.
Intrusive thoughts about how I could have predicted, prevented, or defended myself plagued me. But he had never pushed me, shoved me, or threatened any violence and we were together 5 years. He avoided the police for about a month, and when he turned himself in, he was not put in jail. A few months later, he accepted a plea, and never sat a day in jail for doing this. After the court case was over, I felt like I was actually dead and existing and some sort of purgatory.
People treated me differently and a lot of my friends and colleagues just quit talking to me and avoided me when I was in public. My symptoms of forgetfulness, disorganization, remembering appointments, depression from not knowing what I should be doing or overwhelmed just getting a task started and getting any sort of normalcy in my life was impossible. I had to quit my job because I just couldn’t function.
I could write a book on PTSD alone because for years I would wake up and I wasn't sure who I was since my brain split into 6 different distinct personalities. II didn't know who I texted and lashed out at for memories that were not mine. I blamed the people close to me for thing's they didn't do because my memories were so mixed up. Living with multiple personalities is a very scary thing, and I did whatever that person inside wanted to do on any particular day--whoever was in control it's like I wasn't even there. I tried very hard to keep this secret from anyone because I feared being locked up in an institution for the rest of my life.
The personalities did finally merge this spring and healing has been a very long process. I was obsessed with chronic pain research and advocacy, TBI treatments, and frustrated that no one took me seriously. They kept telling me I am acting like a child. I should have had a doctor follow up, and send me to a facility that specializes in brain injuries but I never got any special care. To make matters worse, the medication I was put on following this trauma exasperated my pain so I experienced severe pain day after day after day for over 3 years, and no one believed me.
The worst part about it was I would ask the doctors tell me what's wrong with me but all they would do is treat .me rudely, look at me as if I was seeking drugs that's not what I wanted. I wanted the pain to go away because it kept me bedridden day and totally destroyed my morale. The only place I was able to ignore the chronic pain was in a casino. I thought about suicide and made plans nearly every day.
It wasn't any of the 10 doctors or so with that I went to who discovered the cause of my chronic neck pain and headaches, it was me. I decided I was so angry at all the doctors for all the medications I was on and a year and a 1/2 ago I went off all of my meds. 1 of my medications I should have been tapered off very slowly and got a condition called protracted withdrawals which had its own awful symptoms and that lasted a whole year of sleepiness and panic attacks. But t 6 weeks when all medications were out of my system, I felt like a brand new person. THE CHRONIC NECK, shoulder, and back pain and headaches were gone and have been gone since. I researched and found out that the drug Klonopin also caused many other people on the internets this type of chronic pain. I was so happy to be off those dangerous drugs quickly fired that psychiatrist! But, I had trouble sleeping, and my anxiety was unpredictable, so I gradually added a few more on a slow basis to get stable. That process has taken 1.5 years.
Things that trigger so much anger that I never used to have are the doctors, not wanting to find a cause/cure, treating me like a drug addict it just made my ability to cope with people almost impossible because I was so angry for being treated for a behavior I wasn’t aware that I was doing, and people who had the skills and ability to help just made me feel awful about myself. It’s strange how someone can label a person with a socially acceptable code word to treat them like shit, and being called an addict is one of them. Nobody wanted to hear it or believe that it was my injury that was causing all my problems.
I am very happy to report that today, I am feeling really good about life again. I set goals, I have support, I meet small goals, reward myself, and when my needs are met, I have no room for self harming behavior.
I still get tired very easily and sometimes I need a lot more sleep than what is “normal”. Other physical things are vision problem: my eyesight has changed and now I have a hard time reading things close up and also have this issue where I can't see the THING in front of me. I’m looking for something and it’s embarrassing when I need help because it may be right in front of me but I can't see it. I have poor balance a lot, and people tease me calling me clumsy. Another symptom is my mouth has no filter, and I can get intense emotional reactions. I really want to control it because I'm sick of their stares, or the old “Are you on drugs?” which only made me hate myself and other people.
I also have short term memory problems that were worse than before because people could take advantage of me one day and I wouldn't remember it so I was taken advantage of a lot. The worst being a family member promised to help reestablish my life with my equity when my house finally sold, happily stole almost $40000 and the police did nothing. Told me no crime was committed!! But I have no power to change it. I can’t afford an attorney so I have had to live with this, accept it, and it nearly destroyed me and my 10 year old son this past few years. . When you are missing teeth, homeless, and have no car, the world treats you like the scum you are. So I really gave up trying to improve my life because I haven’t had any justice in any of this, I don’t know why I’m not a worthy citizen to be treated like a criminal by police or prosecutors, and I really want to know why.
Today, I’m very careful who I talk to, hang out with, go in a car with, and rarely invite people to my house. I keep my guard high, and protect my child zealously I have dental insurance now and am getting my teeth fixed because when my front tooth broke, the cold shoulder, discrimination, nasty comments, and worse things said behind my back just took a life of their own. I wanted my teeth fixed, but had no money to do it so I just wanted to die.
I have difficulties with concepts of time time goes by very very quickly sometimes sometimes way to quick so have to set timers and alarms. Some days I wake up and I don't realize it's really really early in the morning and I get started and I'm out of sync with the world again and so with the time perception, it's a new symptom. the ability to estimate how long it's going to take me to do something is hard because things that were simple before are challenging now. especially with technology and I used to be a programmer and a network and systems analyst for 10 years.
Sometimes I have very little patience and get frustrated when people don't understand what I mean or what I'm trying to say and I get angry. Mostly at myself but when I'm ready to be away from somebody and cannot handle conversation, I have to cut it off immediately and walk away. It may seem rude but I just don't want to yell at anybody and I don't want to be angry and sometimes people try to force me to talk things out but that only makes me worse.
I really wish my family was more understanding with my symptoms of TBI. They said too many times that I just wanted to act childish, and was on drugs, like everyone kept saying. Even though I was tested every month at my doctors I too got paranoid that someone was drugging me. I would even buy drug test kits at Walmart just to make sure. Of course I never tested positive for drugs and never been a fan of them in the 1st place. But sometimes my behavior may be like someone who is, and it's hurtful when people even ask that or they stare at me in public and so I have become a recluse.
I work very hard today on staying positive. Things are working out well and am doing difficult tasks every day to build my life back. I am very thankful for getting to this point in recovery and for the people who have been with me or that I just met and have been helpful and asked me instead of assumed. I appreciate being given a chance again and being treated like a human with dignity.
I've learned to let go of so much anger I had especially about bystanders or people who victim-blame or shame when it comes to domestic violence. I am still angry at the police for how I wasn't able to get medical help but treated like a criminal in a time of need. Flashbacks can occur anytime, but police trigger the worst ones in me. Others in the court system seem to have no compassion or concern for me.
My TBI pretty much destroyed my reputation and I'm working to rebuild that again. I have been frustrated with health care workers, mental health workers, social workers because nothing they have done has helped me at all until getting to a good psychiatrist 5 months ago. Yet, I am learning to say positive words and I have to work very hard at that because the emotions are almost on the surface most times and when I get triggers or reminders of how I was treated or harmed, I might fall into a flashback and then life becomes very difficult for me and those around me.
The good news is I have been recovering and I felt a lot of success so far and patience and acceptance in this community and sometimes I forget that my brain got hurt. My faith in people is being restored one kind soul at a time. If things get really tough I just put on my headphones pump the music really loud and dance until I feel better if I'm awake. If I’m tired I have to just go to bed and most issues in my brain resolve.
So my recovery has been pretty interesting and nothing what I would have expected over the last 4 years and I think a lot of the damage that was done due to lack of oxygen and blows to the temple and back of the head and so I try not to focus upon my injury but focus on where I am at right now and how can I make today better-- this week better --this month and look forward to a future again and that’s the biggest blessing I could imagine.
I'm having my writing published, and that's exciting. I'm training to fight in a cage match, and I am happy to be alive.
Thank you for listening.
Shannon Avery: "I am a trained professional technical writer who is going to be a phenomenal writer and movie producer. I have two sons, and was born and raised in Minnesota, the granddaughter of Indians and immigrants. I have a B.S. in Business Administration and M.S. in Education. I have extensive experience as a computer programmer, database manager, systems administrator, construction management, the responsibilities of being an owner’s representative on multimillion dollar commercial construction projects, and has brought in nearly 10 million dollars for a northern Minnesota Tribe. I enjoy poetry, creative fiction writing, and spending time with her child and grandchildren."