Tuesday, April 21, 2009

Family just doesn't understand or refuses to

The family atmosphere is a great challenge for the brain injury survivor. There is no way to convey how it feels to be a TBI survivor to your family. This is particularly difficult when you have been raised in a family that does not give you emotional support regarding your injury.

My family shows no interest in trying to understand my injury or help me with it. My mother is always telling me I must get a job although I am unable to work due to my dizziness which can be severe at times and other injuries I am still challenged by due to being crushed.

Getting your family to understand that you cannot work, you have a brain injury and just why can't they understand this is nearly impossible. It wells up in frustration and anger. You just want them to understand. You want them to give you a hug, tell you that it will be better and that you will get better with time. You just want support. I can't get that with my family.

It wasn't too long ago that my mother told me how much of a financial burden I was to her and that I needed to get a job at Wendy's. I was just shocked. After trying for the first 2 years after my TBI to tell her what it has done to my brain and how it has affected my lifestyle, I felt as if I had done nothing more than talk to a wall.

I have to accept, somehow, some way, that my family will never care enough to give me the support that I desperately need from them. We can't choose our families, therapists say. But I can choose how to deal with this effectively and not let it get me down. But it sure is difficult to do.

With my TBI, I feel as if I am on an island and no one understands how much suffering is involved. I feel alone at times. Sometimes I feel I am not even from this planet because no one I know has suffered a TBI.

I am still hoping that I will be able to be seen by a neurologist to get treatment. The cost is great and I do not have any income. I am hoping for a miracle. And I am waiting to go before a judge for my Social Security appeal. It's all I have for now. I won't give up. Someone has to believe in me, even if it's just me.

Sense of smell

Suffering a brain injury is more traumatic than one might think. When the head experiences a very hard blow, the brain is jostled around inside the cranium. And there isn't much room for it to move around inside.
After my brain injury, my smell and taste changed very noticeably. Many foods I could no longer eat because they did not taste the way they were supposed to taste. Some foods I had to give up were chocolate, bananas, onions, fried foods. I guess in a way that can be a good thing. I tried to eat those same foods, just willing myself to pretend they tasted the way they were supposed to taste. I believed if I did this, I could somehow fool myself into believing the food tasted right. It didn't work. After three years, chocolate, fried foods and sometimes onions, depending on the type, don't taste correctly.
As for smell, that's a whole other ballgame. In a sense (no pun intended), the smell of bad odors no longer smelled bad. For example, one person I had been around didn't believe in deoderant unfortunately. I knew this person was emitting the familiar smell of body odor, but to me it smelled like a sort of soup. I then noticed that anything that smelled bad almost always smelled like soup. The soup smell wasn't necessarily a wonderful soup smell but more like perhaps one of those elementary school soup smells. I can now bear the bad smells that most other people cannot.

For a long time, gasoline didn't smell like gasoline. However I was aware that the smell I was experiencing was gasoline since I was filling up my car with gas. But it just didn't smell right.

One scent that can really make me ill though, is the scent of perfume. It is unfortunate that most people don't understand how deeply the perfume smell can upset or irritate a brain injured person. In my case, it can lead me to feel very irritated and almost as if I am dissociating. A little bit of anger or frustration can rise up as if I am really expecting that the person with the offensive perfume would ever understand that it is making me sick. It's difficult as it is to get people to understand what traumatic brain injury is.

Yesterday I was walking into a store and noticed a nearby fast food hamburger place that grills its burgers. The cooking fumes emanating from the pipe smelled to me like burned plastic. At times, I have to ask people around me what the smell is because I cannot determine it myself. Or they will remark that they smell something and I cannot smell it. Sometimes it makes me feel like I am missing a little piece of life that can be pleasant.
I wonder if I will ever be able to eat those foods again without them tasting strange. Only time will tell.
I'm willing my brain to heal.

Tuesday, April 7, 2009

Florida Woman Suffers Traumatic Brain Injury After Freak Accident: Three Years Later Is Still Unable To Receive Treatment

Traumatic Brain Injury is often described as the silent epidemic. I am part of that silent epidemic. I am a traumatic brain injury sufferer.

'Silent epidemic'
Experts call it “the silent epidemic,” in part because the official numbers most likely underestimate the size of the problem. A TBI can do significant damage without leaving any visible signs, so the initial injury is often dismissed as just a bump on the head.

“There are countless ‘walking wounded’ who look just fine on the outside, but who aren’t the same on the inside,” says Jonathan Lifshitz, an assistant professor at the Spinal Cord and Brain Injury Research Center at the University of Kentucky Chandler Medical Center.

The aspect of this silent disease is that an injured individual can show no outward signs of the illness but inside the brain, the injury rages on. Family and friends also view the brain injured person with misunderstanding which can create more challenges for the brain injured sufferer. In all reality, the brain injury sufferer wants nothing more than everyone around him or her to understand without judgment.

I suffered a traumatic brain injury three and a half years ago after my body was crushed in a trash compactor in a freak accident. Little did I know just how much this injury was to change my life physically and emotionally. Compounding this tragic accident was the unfortunate fact that I had and still have no health insurance to deal with the injuries and challenges I am facing.

Due to my traumatic brain injury where I suffered a severe concussion and also a head laceration, I also lost hearing in my left ear. I lost consciousness several times and have gaps in the memory of what transpired that unfortunate day.

Click here for a picture of my head laceration. WARNING: It is graphic

Due to the lack of health insurance, I was treated minimally at the hospital. I sustained 3 broken ribs, a broken collarbone, and my right leg was crushed. This Pensacola hospital whose initials are SH, pushed me out the door even though I was still vomiting up blood and was severely dizzy from my concussion. As the nurse was pushing me out the door in a wheelchair, she was expressing her anger and frustration to me and my friend that this was wrong and she couldn’t believe they were doing this to me. I could believe it. This is normal for anyone who doesn’t have the ability to pay.

An hour later I was back inside my apartment. I lost consciousness again and was taken by ambulance back to SH hospital, where I was pushed by two EMTs into the emergency waiting room. For the next two hours, I lay unconscious in a wheelchair with three of my friends by my side. Another doctor finally examined me after I was going in and out of consciousness for the next three hours and said I was okay and could go home. As I was moved into the wheelchair, I began vomiting up blood again. But they sent me home.

For the next two months, I lay in my bed. For the first two weeks, I needed assistance to get out of bed and go to the bathroom. I was unable to do anything on my own. I was in severe pain from my broken bones and suffering horrible dizziness.

I had to wait 6 weeks to get an appointment at the local community clinic. Without health insurance or financial means, I had no way of getting proper treatment.

Here it is over three years later and I still have not been able to see specialists. My broken bones have healed but I still have a hematoma in my right leg and my back muscles cramp up from being crushed. I still suffer from dizziness and have problems with my sense of smell and taste. I also have cognitive problems with memory. I desperately need to see a neurologist and get proper testing done. Treatment is available for dizziness and cognitive problems that I currently suffer from, but without financial support, I am unable to get the treatment I need to get well and get back to work.

This is the American nightmare. There are many people out there suffering just as I am because they do not have the financial capability to get the help they need in order to get well and get back to a normal life. There is no safety net for us. We have fallen through the cracks.

I am asking for donations to help me get the specialist care I need for my traumatic brain injury. Tests will need to be done to determine the type of brain injury that I have and the proper treatment for the specific type.

When you make a donation, 10% of the donation will go to the Brain Injury Association of America.

If you want to donate to my fund, I would greatly appreciate it.I want nothing more than to be well and get back to work and get on with my life.

Thanks for listening!

If you have any questions, please email me at: