Living with Traumatic Brain Injury
by Kimberly Carnevale
Author/Motivational Speaker/Disability Advocate
President, Canine and Abled, Inc.
"Taking The Dis Out Of Disabled"
"But You LOOK Fine … Uh, why are you wearing your bedroom slippers?"
It's time to take my daughter to preschool. I check myself in the mirror one last time, just to make sure that everything's in place. The image I see of the seemingly well-put together woman belies the internal storm that rages inside my injured brain.
My daughter is still half-asleep and wants to stay home from school today. The temptation to let her teases me with the thought of falling back into my still-warm bed, but I don't dare. I'm not going to be much fun today, and I know she needs to go to school. The mere thought of getting her dressed and driving her to school overwhelms me, but the thought of having her home and having to entertain her all day terrifies me, and so I seek comfort in the quiet support of my service dog and push forward.
By some miracle, we are finally dressed and headed out the door, service dog by my side, keys in hand, and child clean and dressed appropriately. We're late (again), but we're on our way. Just as we step outside, my observant five-year-old points out that I'm still wearing my bedroom slippers. They feel just like shoes, so my brain couldn't tell the difference. I run back inside the house, trying to calm down so that I can create the picture in my mind of what my shoes look like, find them, and put them on. I remember when processing was automatic, and oh, so much easier. My brain is on manual operation status these days, and sometimes the engineer isn't able to operate it very well … like today.
Last week, I was the picture of health. My daughter got to school on time everyday, all her projects were completed and turned in, and I was productive and able to cross things off my to-do list.
This week is different. My life's on hold until my injured brain rests and readjusts to whatever it is that got it overwhelmed this time. It doesn't matter that I have a list of things that must get done, appointments to schedule, or mountains of laundry to do. It doesn't matter that I have a child to raise, and that she requires the time and attention of a fully functioning brain.
It doesn't matter. No matter what priorities I have, no matter what responsibilities I have, my brain is in shut down mode, and no amount of coaxing, prodding, or willing it to do what I want it to do is going to work. I'm at its mercy; but hey, at least I look fine. At least that's what the image in the mirror tells me. I may look fine, but I'm anything but fine.
Cognitive dysfunction stepped in and took over my life yet again. It's like an unwelcome guest that shows up without warning, takes over your home and life, creates havoc and refuses to leave until it's ready. I know my life is not my own until my functioning returns to an acceptable level, and that the ride ahead is going to be a bumpy one.
It all started yesterday, without warning, without a telltale sign it was coming; BAM! I had plans to have my taxes done after I dropped my daughter off for school. I realized that I'd forgotten her social security card, and swung by the house to grab it. While in the filing cabinet, I saw a book that I was supposed to send out last week. I'd forgotten all about it. I reached for an envelope to put it in, but couldn't find one. I then remembered that I was out of stamps, and went to search my purse to see if there were any left in there. While on my way to my purse, I saw the prescription for an ultrasound that I was supposed to get laying next to my laptop. I had put it there to remind me that I needed to make the appointment. It took me a year and a half to finally get the help that I needed; and only after an exhaustive search turned up a social worker who fixed my insurance issues and arranged the initial appointment was I able to finally see a doctor.
I'm pretty sick and need three abdominal surgeries, and the ultrasound is my first preparation. I picked up the prescription that had the office phone number on it, and began to dial the number. The recording on the phone said to have all social security numbers and insurance information handy; and I realized I didn't have my insurance card on me. I hung up the phone, just as it started to beep. I'd forgotten to plug it in last night to charge, and the battery is going dead. I go into the other room to plug in the phone, and go back to the other room. What was I doing there? I didn't remember. I saw the drawer of my filing cabinet still open, and was reminded that I needed my daughter's social security card. I grabbed it, and started to put it with my other tax papers when I noticed the prescription sitting by my computer. I realized I'd never finished that task, but now with the phone in the other room, my insurance card in my purse, and needing to get to the tax preparer; that seemingly simple task loomed large and overwhelming.
I took a deep breath, called my service dog, and headed out the door to the tax preparer. I got to the building's parking lot, which was empty, thinking to myself, "Great, I'm not going to have a long wait!" But then I realized there were NO cars there at all. The building was closed. I felt myself get really angry, after all, I had put so much into getting ready for this appointment, and the nerve of them not to show angered me. I went to the office next door and asked the girl there if she knew why the tax preparer wasn't there today. She said, today is Wednesday; they're not in today. I started to protest, when it suddenly dawned on me, TUESDAY! I was supposed to go to get my taxes done on Tuesday! Feeling totally overwhelmed and deflated, I returned back home, back to the mess that I'd created looking for my daughter's social security card, and back to that blasted prescription that taunted me; a blatant reminder of my cognitive dysfunction and subsequent meltdown.
Wearing the proper foot attire, and now a full twenty minutes late leaving for my daughter's trip to school, I finally get my child, my service dog, and myself loaded into the car. On most days, we chatter about what the day might bring, say good morning to God, and sing along with the radio. Today is different. Today, the sound of my daughter's voice, which usually makes my heart leap with joy, grates my nerves like fingernails on a chalkboard. When it doesn't stop, I feel overwhelming anxiety bubbling up and tears spring to my eyes. I can't turn the radio on, because mixed with the sound of my daughter's voice; the cumulating sounds would be the end of the control that I'm holding onto by a thread.
I hear my daughter say, "Good morning, God!" a blatant invitation for me to continue our morning prayer ritual out loud, but instead, I tell her, "Honey, lets talk to God silently in our hearts today, okay?" Her little face falls with disappointment, but she just says, "sure, Mom." and I'm sure that she's praying that God gives her Mom a new brain … one that works.
We finally arrive at school, and I take a few deep breaths to prepare for the plunge into the cognitively assaulting environment. "It's only for a few minutes" I tell myself, picturing myself signing her in, helping her hang up her things in her cubby, and clearing out of there as fast as I can, not engaging anyone in a conversation that I can't hold right now. Everything goes according to plan, and with a final hug from my little one; I'm able to make my escape. But her teacher, who had been helping kids off the bus, catches me in the hall. "Hi! How are you this morning?"
"I'm struggling," I say, as a means of apology, trying to escape the engaging young woman. "But you LOOK great!"
My interpretation? "Ah, you LOOK fine, so you must not be all that bad … buck up, things aren't that bad!"
"Looks can be deceiving," I manage to choke out, completely and totally overwhelmed and now upset on top of everything else. I flee for the door before I embarrass myself with the tears that threaten to fall.
I nearly run to my car, which is parked in the handicapped parking spot. I'm sure that the casual observer would mock me for this; as I LOOK fine, so I must not really need a handicapped parking space. It would never occur to an outsider that because of having a service dog, I need to have extra maneuvering space the larger spots provide, or that being closer to a building means my dogs feet stay cleaner and free from debris, and that by saving steps everywhere I can, I rest my injured brain and am better able to get through an entire day. But they can't imagine what it's like, and I'm in no shape to explain it to them.
Once in the quiet haven of my car, I quickly pull out of the parking lot so as not to be flagged down by someone who knows me. I try to listen to my favorite station on the radio to distract me from the overwhelming panic that is overtaking me, but the DJ's voice that I normally enjoy listening to, hurls spikes into my brain, and the music feels like needles in my head. I turn off the radio and try to talk to God instead. Even my own quiet voice inside my head is deafening, and so I force myself to concentrate on the road and my driving.
By this time, I've graduated from mere sound sensitivity to movement sensitivity - not good. With every car that passes by, I feel like someone is punching me in the stomach. The trees that pass by taunt me and push me even further into the great abyss of anxiety. I want the world to stop and let me off, but of course, that isn't happening.
I finally arrive back home, and I rush into the quiet sanctuary of the house. I have a mountain of things to get done today; but they'll have to wait, again. In order for me to be able to function at all this afternoon when my daughter gets home, I need to do nothing, look at nothing, think of nothing, and heal. The thought of going back out into the world terrifies me, but I can't think of that now.
My stomach growls, and it dawns on me I haven't eaten breakfast today. My daughter eats breakfast at school, and I usually fix myself something after I get home from my daily walk in the park after I drop her off. I'm very hungry, but the thought of trying to fix myself something to eat is overwhelming, and I give up trying. I must rest, for after I pick my daughter up, dinner, bath time, and bedtime rituals loom ahead. It's a daunting feeling, but as I head into my room back to the quiet serenity of my bed, I pass by the mirror and catch a glimpse of myself. "But you LOOK fine." I think to myself. Looks sure can be deceiving.
Traumatic Brain Injury affects millions of people, their family and caregivers. It disrupts lives, breaks up many marriages and puts a strain on relationships. The fact that many symptoms are behavioral, emotional, or cognitively based makes it difficult for the casual observer to be compassionate, and many times, TBI patients are wrongly accused of "being lazy, irresponsible, have lack of control, or just plain crazy". TBI patients feel a sense of loss over their lives, and feel badly for the behavior that they have trouble controlling. Many are misdiagnosed, and suffer symptoms for years before proper treatment is provided. Others have trouble accessing resources, and get lost in the system, never fully able to take advantage of programs/assistance that is available to them due to the lack of advocacy.
If a person doesn't have close friends or family members to navigate the very limited resources that are currently available for Traumatic Brain Injury, they miss out on health care, daily support, and even basic care needs.
Traumatic Brain Injury is often invisible to the casual observer; but just because a person doesn't show outward signs of a disability, doesn't mean that he/she doesn't suffer from it; and all the challenges that go with it.
Education and awareness is key to patients with TBI to find the compassion, tolerance, and assistance they need.
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