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Dear TBI Fund Committee,

THANK YOU so much for the Delaware Traumatic Brain Injury Fund approving funding to provide a really nice new computer to me with voice to text software on it that helps me complete every day activities and helps me to stay in contact with people without leaving home!

You have NO IDEA what this means to me.

Let me explain a little:

What having a brain injury is like for ME (and it has been explained to me by a WONDERFUL neurologist that while everyone’s brain injury is different, most brain injuries are horrific for the patient AND for the doctor because so little is understood about them and so little can be done to FIX or even understand what is happening to the patient.)

I am 48 and a single parent. I was a trauma nurse. I had a diffuse axonal injury, which means multiple area were damaged, but the chief injury occurred at the BASE of my brain with a contra-coup injury to my frontal lobe. Things like balance, vision, co-ordination, body position and stabilization, vision, vision interpretation, mood, personality, emotions, co-ordination and fine motor skills, memory, socialization skills and cognitive function were all affected.

I am NOT the same person I used to be. I don’t even LIKE some of the same things, foods, activities that I used to (not that I remember many of my pre-injury life.)

I wake up every morning feeling drunk and I don’t drink. The room spins, I am nauseated, I can’t stand upright and I often fall out of bed. I take a handful of medications which every few months my insurance decides they do not want to pay for and I have to spend several weeks on the phone, listening to awful music for hours, days in a row, waiting for doctors to fill out medical necessity forms, to ensure I get my medications. Without those medications, I can’t get out of bed. It is like a game for insurance to play. I have threatened lawsuits, taken my insurance to court and won my meds back. Ridiculously, one of my medications is $28 a pill and I take that med 4 times a day.

We lost our beautiful home last November because we couldn’t keep up the payments.

I lost my job because I can’t cognitively do the work and physically I now lack the ability to perform my duties as a nurse. I can no longer write my name because the tremors and spasms in my hand prevent me from holding a pencil anymore.

The waitlist to get into Brain injury physical rehab has me on a list until December 2019. That is a pretty long time when you hurt and can’t function.

The UPSIDE of brain injury is I have learned a LOT of patience. AT first, I was angry all of the time. I hated the world. I didn’t understand why someone like me…a NURSE, couldn’t qualify for ANYTHING, not even disability.

Now, I realize it is what it is. I can’t change it so I have to move on to things I CAN change.

My new found patience takes me out in nature where I spend time just BEING and quietly sitting in beautiful nature preserves. I have been able to patiently sit and get within a few feet of eagles and herons and kingfishers and take beautiful photograph of these incredible birds. My camera is old and not very good, but because I am so patient now (and I used to be a TRAUMA NURSE and a TYPE A personality) that animals don’t find me intrusive. I just AM and I just SIT and people find it incredible that I am accepted into this realm of wildlife so easily.

The computer you gave me helps me save the photographs that I am able to take. I can download them onto the computer and treasure them forever. I will send you a few as a token of appreciation.

It is hard to have friends when you have a brain injury. People got tired of me asking the SAME questions over and over. At first, it was a novelty and I was amusing. Now, I am just annoying. I don’t remember conversations I have had, people I have met, things that recently happened. And it isn’t a matter of trying to access them in some hidden recess of my brain. Those memories never got stored anywhere and they just plain don’t exist, like a computer that someone wipes the hard drive and memory every night and gives it a factory reset. You can spend hours attempting data recovery, but finally, you realize that is a waste of time because those memories never got backed up, they simply vanished forever.

It takes a very special person to befriend a brain injury survivor. My older son became angry with me.

I can’t even watch a TV show because if there is a commercial break, I lose what happened in the show. Or, on the week break between episodes, that last episode vanishes. My older son would become incensed trying to explain things over and over to me. He moved out and went to live with his dad. (he is 16).

My identity was linked to me being a good mother. When I could no longer do THAT anymore, the depression was overwhelming. I didn’t want to LIVE anymore. Can you imagine a life in which you cannot be a good mother, no matter how much you want to…and your friends AND your teenage son REJECT you?

Finding a therapist to help you understand is difficult. Brain injury is NOT like regular mental illness. Your BRAIN is broken, so all the things they tell you to do, like rationalize and examine emotions, doesn’t work.

My brain plays Russian Roullette with emotions. It picks one and that is what I feel, regardless of the reality around me. I cry because that is the emotion I picked. I laugh uproariously at nothing funny…my brain just stopped at humor.

There is a wonderful medication for these symptoms, but my insurance takes it away for long periods of time because it costs thousands a months and doctors have a hard time filling out pre-authorization requests. The longest has been five months I have waited for a request (one page, back and front) to be filled out by a busy physician. Those five months without that medication found me cycling so quickly through emotions I was laughing, crying, angry, anxious and terrified all in the span of an hour. EXHAUSTING. I finally wanted to just DIE already because the whirlwind of crazy emotions without rational basis was like a rollercoaster ride from hell. Well meaning therapists tried to tell me to grab these emotions and explain them away.

There was no basis in fact for ANY of them. I had been this mild manored person that never got angry and suddenly I was ANGRY…so angry I punched holes in walls until I broke my fingers and my hands were bloody. And then I hated myself afterwards.

I STILL do not know who I am. I can’t tell you what I like, my favorite flavor of ice cream or anything.

I have covered the mirrors in my house because I don’t recognize myself anymore. My younger son laughs and tells me it makes for some seriously bad hair days! (He is right!)

Social cues have become a complete mystery to me, sort of like an Aspergers patient.

I no longer have friends, or a support group. My family assumes I am lazy and they have nothing to do with me. It MAY have something to do with the fact that at my father’s funeral I burst into hysterical laughter and couldn’t stop. It was truly humiliating.

Unlike AA, there just isn’t awareness for brain injury survivors and we are treated like lepers, or even worse, totally shunned from normal society and often our own family because they do not understand us.

I often think it is because a brain injury is something that could happen to anyone at any given moment, and looking at someone like me is a reminder of that, so it is easier to blame me, pretend I don’t exist, or help someone like a drug addict, which most people are confident they could never become.

Like I said, the medications help, when I have access to them.

The headaches are a whole new experience in pain. I actually black out from the intense pain. We live in a society that is afraid to treat pain and doctors seem incapable of telling junkies apart from actual pain sufferers but I would do anything to have these headaches go away forever. Double vision, room spinning, ear ringing, squeezing headaches.

But, after five years of them, I am adjusting. I sleep. Usually 14 hours a day. The exhaustion of concentration on staying upright is hard to explain to someone.

I refuse to give up.

I fight. I walk. I swim. I believe I can get better. I believe I will actually get an appointment and get into a rehab and see a doctor that can help me. It has only been five years and I have made it this far. I am getting better in that I am learning to survive and actually enjoy life again, just a whole different kind of life.

And I realize there are people out there that can and will help. Like you.

You gave me a computer.

I don’t go out alone anymore. I get lost a block from my home. Nothing looks familiar to me. I use GPS to navigate, but it goes off line and I panic. I lose my car in parking lots. I try to photograph where it is but sometimes the photos don’t come out. I have used police to help me find my car in busy parking lots because I am scared and embarrassed and humiliated and can’t find the darned car. Sometimes the police are wonderful. Sometimes not. Easier to not go places.

A computer means I can order things online and not have to go out!

I have become disoriented when the GPS goes out and I pull over and cry and panic. I wont drive alone anymore in strange places, which is tough because most of my doctors are HOURS away. And I am TERRIFIED to travel to them. Medicaid cabs help, but they can leave you at appointments 3 hours before your appointment time and throwing up and being sick for hours in an unfamiliar doctor’s office is a nightmare.

This is my life now. Planning a nap after a shower because I am exhausted.

My phone never rings.

I have no friends.

Most of the time, I don’t like me because I don’t know me.

I fight constantly for care.

We sold off anything and everything we could to make ends meet. I haven’t had new clothing, a haircut or anything nice since my accident. We lost our home. We lost our car. I lost my career, my job and myself and my friends and my family and my son. I feel like a felon, a bad person or some sort of evil incarnate. When I tell people I have a brain injury they RUN in the other direction, as if I will become a burden on them or I have leprosy.

I had a very lengthy court battle to keep custody of my son. I wonder if people with cancer have to go through that or they actually get HELP. Or if drug addicts go through that or they get HELP. My younger son’s father is an alcoholic that abused both him and ME, but that was not an issue The court actually awarded custody to his father, who hadn’t seen my son in three years. My son refused to go. We just moved.

I don’t tell you this because I was pity. I DON’T. I want UNDERSTANDING. I kind ear or a kind word.

Which you have done, and I thank you like you cannot imagine. A group of strangers got together and donated money for me to have a computer. A computer to research doctors, treatments, rehabs, therapies. To write things down so I don’t forget. This is a LIFECHANGER for me and I am so appreciative.

I am no longer angry. A sort of peace has finally come over me. Acceptance. I can only do so much. Be so much. Try so hard.

I am way harder on myself than anything, because I REMEMBER who I was and what I used to be able to do but thinking about that is useless. I need to grow and make a new me, a new life.

The old me never would have sat and had breakfast with an eagle. Or a discussion with a heron. I am blessed. And grateful.

And thankful.

I hope I didn’t come across as depressing or awful. I write from the heart, which I have been told is depressing and unacceptable and inappropriate. I am so sorry if I came across that way. What I want to be is thankful and grateful for what you, strangers, have done for me.

You changed my life with the simple act of giving me a computer. You opened my world. You gave me hope.

For that I am sincerely thankful.
-- AB