Monday, December 20, 2010

Closed Head Injury: The Invisible Disability

Memory loss. Horrible pain. Vertigo. Anxiety. Panic attacks. Tinnitus. Agoraphobia. Loss of senses. Speech problems. Acute sensitivity to light and sound. Balance and coordination issues. Fear of falling. Depression. Nausea. Cognitive problems.

These are just a few of the symptoms I've experienced since my head injury, and they all have one thing in common: they are mostly invisible to others.

Closed head injuries don't manifest themselves like other injuries or disabilities. Everyone can see someone with a cast over a broken bone. Someone using a wheelchair or crutches or even something as small as a hearing aid is immediately recognizable to others as having an injury or disability. And, for the most part, people are accommodating, understanding or helpful to those with these outward signs.

The same can't be said for a traumatic brain injury/closed head injury. You can't see the fracture in my skull, the bruising and blood on my brain, or that I have limited abilities to do or handle certain things. In fact, the usual reaction when I tell someone about my injury is, "If you hadn't told me, I'd never have known. You look great." It's not that I don't love hearing that - especially the last part - it just embodies the nature of my "disabilities."

Granted, those people who have seen me in serious pain, having a vertigo or anxiety attack, a random crying fit, a sudden loss of balance, etc., have captured glimpses. But those glimpses are like the tip of an iceberg - the biggest problems lie under the surface. Having said this, unless you are willing to explain to every person you encounter what is going on inside of you at every moment - especially the bad ones - the extent of your problems is never going to be fully understood, even by those closest to you.

Perhaps this is why there is such a need to heighten awareness of the effects of closed head injuries. By their very nature, they don't advertise themselves in a way that brings about sympathy or understanding. We are seeing more in the news recently about concussions received in sports accidents and the gradually increasing awareness of how severe these injuries are. Because of this, many are starting to realize that even with a mild concussion, the pervasive attitude of "Just tough it out and get back into the game," is entirely counterproductive and even detrimental.

In my case, "getting back into the game" was something I desperately wanted to do after my fall. But the reality was I could barely do anything in the immediate aftermath, and even reading was difficult for me for several months. Going out into public was a veritable nightmare, especially to stores and supermarkets where bright lights, overstimulation, distracted people, my poor balance and coordination, the combination of medications and pain, and the constant fear of slipping again, all made for an extremely unpleasant experience. If I happened to bump into someone or something, had to grab a hold of someone or something, or just went into internal anxiety mode, I got nothing but strange looks and unfriendly words from strangers. I looked normal, so why was I acting so strangely?

Like reading, driving was at first impossible (and for the first time in my life I experienced motion sickness as a passenger). So was walking up or down stairs or even managing slight grades by myself. I didn't go anywhere alone.

About a month after my fall, David and I took a short trip to New Orleans, which we had planned months before. I was determined to go, and the doctors gave me the green light. Flying for the first time since I fell was a nerve-racking experience. Thankfully, the kind people at Southwest Airlines allowed us to pre-board so I didn't feel rushed or pushed getting to and on the plane. They were kind enough to recognize that I DID have a disability that required extra time, even though they couldn't see it. An experienced flier, I nevertheless spent the short flights between Dallas and New Orleans in a semi-conscious, medicated state, gripping the armrests.

It was a fun, but exhausting trip. Just three nights. Medicated and uneasy. Staying away from crowds. It was also liberating in a way. I had accomplished something, and I realized that my great passion for travel did not have to stop because of what had happened. Relief.

Over time, this relief came in other ways. After a while, I started driving and reading, a little bit at a time until I became fully functional again in those regards. I began doing more social activities. During this time, I went through vestibular therapy, which helped me get through the worst of the balance, coordination and vertigo issues.

As time passed, what external symptoms I had began to diminish, and I learned to control them better. This was good in a lot of ways, but it also meant that the more I appeared normal, the less I appeared to have problems. Those problems, however, were merely internalized. And, as I've mentioned before, I suppressed a lot of things because I didn't WANT to be treated differently or seen as having problems. I wanted desperately to be my old self - fully and unconditionally. I know now this is not to be.

Many of my remaining problems will improve with time, treatment and therapies. Others will stay with me for life. Right now, I revel in small victories - and big ones, too, like when I realized that I hadn't lost the ability for two of my other passions: research and writing.

Unfortunately, I also have the occasional nasty surprise. Like the first time I went to the dentist after my fall and discovered my jaw was knocked out of alignment. Or today when I went to the eye doctor and found out that a year after the injury, I still have brain swelling that causes field vision problems, among other things. But in those little surprises, I manage to find gratitude in what I haven't lost. Today the eye doctor told me that the ocular nerve is very close to the olfactory nerve. The head injury severed my olfactory nerve, leaving me with no sense of smell or taste (anosmia). Miraculously, my ocular nerve is fine. In other words, I may not be able to smell, but I can still see. I don't take this for granted.

I write all of these things because I want people to understand that although the symptoms of closed head injuries are invisible to others, they still create disabilities for those affected. As Sir Francis Bacon said, "Knowledge is power." And now you know.

5 comments:

  1. Thank you for sharing your point of view. It affirms my thought that when people act in an unusual way, we have to say to ourselves "we don't know what their situation is." Maybe they are just selfish, hateful or ignorant people but there's always that chance that some hidden trauma (injury, illness, grief, etc.) may be brewing in their lives.

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  2. wow, tori. this one has left me speechless. i relate to all of it. not a day goes by when someone doesnt say, you look sexy and fantastic, i could never have known that half your brain is gone or that you had open brain surgery or that you're half-blind!'

    they also can never know how damaged i am inside because of my brain injury.


    i know its great that i made it through without any visible physical damage/deformities. but it is frustrating that nobody knows how injured i really am. just last week i went to sit on the far-left back seat in the movie theatre (the only place i can see the screen) and someone on crutches ordered me to get up, and yelled that im supposed to give it to the handicapped!!!

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  3. Thank you, anonymous, for sharing. We're on the same page. All the best to you, and thank you for reading.

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  4. I too have suffered a TBI, in June/July 1997. At this moment I cannot even calculate how long ago it happened due to the incredible headache I have at this moment and the total confusion I am feeling. Most of the time I don't want to wake from sleep for fear of pain or another medical issue that has evolved. I'm told frequently how beautiful I am--appearances--sometimes I want to sing, "I'm dying inside and nobody knows it but me.." thanks for sharing!

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Thank you so much for your comments and support! -Tori