living with traumatic brain injury (tbi)
A lot of people ask what it's like to have a traumatic brain injury. I smile as I reply, "I don't remember"...which is my attempt of adding humor to the truth. Most don't get it. I suppose it's one of those things you only get if you've been there.
I have a hard time explaining what it's like to have my brain no longer function as it did. To learn new ways and strategies to be able to function throughout a day. The struggle and frustrations from feeling as though I lost who I was.
For those with relentless curiosity, I admit it's better than I thought it would be.
Here's my story...
I still remember the way the air conditioner hit my neck, blowing my hair as it blasted away the hot July heat.
I didn't mind traffic was backed up on the highway. I had taken the time to pray and ask God what He'd have me do.
Life was going great; I was supposed to be happy achieving what I wanted. While I was grateful, I also had a sense I was missing something. I wondered in all my striving if I had failed to be more, to do more, for Him.
What if God was looking for my willingness to do His work, but I was too caught up in mine? I didn't want to be that way. I didn't want God compartmentalized conveniently into my life. I wanted Him to move in my life, and I wanted to be used for His purpose.
As "Amen" left my lips, I felt the impact from behind. A kid texting and speeding in a SUV never looked up. The high speed sent my body whipping back and forth.
I should have prayed specifically. Obviously God slotted me into the wrong category. Getting hit by a car wasn't what I had in mind...I was thinking more along the lines of teaching Children's Sunday School.
The timing of the accident was too perfect. God can take months and even years to answer my prayers, but He must have been in heaven lining up cars, waiting for my final word.
Obviously this is a lesson in grace I thought. No, I would not throw the car in reverse, and back over the guy who hit me texting. No, I would not be irritated; he lacked manners and compassion, and didn't get out of his car to check on me. I would show mercy and grace, knowing he probably regretted a stupid mistake. God knew what would happen, so I'd chose to be thankful for His timing and the given opportunity to extend grace.
Having never been in an accident before, I couldn't believe I could be whipped around like a rag doll and not be hurt worse than I was. The officer on scene and the Dr in the ER warned me how bad it would be especially with such a hard impact.
I thought everyone was making a big deal out of nothing. They didn't know what I have lived through before and the pain I've endured. While it didn't feel great, I naively assumed a sprained neck would be similar to an ankle - I'd feel it right away.
The next morning, I couldn't lift my head off the pillow. I painfully lifted my sore arms and used my hands to support my neck so I could sit up. I shook as I opened the pain killers the Dr prescribed.
Standing in the hot shower, the water mixing with my tears, I didn't dare let go of my neck. Like an infant, my head was too heavy to hold up. If it tipped and I used my neck muscles, it sent me through the roof. I took back every thought I've ever had about a high pain tolerance.
something's not right
I started sleeping 20+ hours a day. When I'd eat, I'd fall to sleep at the table. When someone was talking to me, I couldn't keep my eyes open. I was told the whiplash was the most severe one could be, just short of snapping my neck. All I wanted to do was take some more pain pills and muscle relaxers and go to sleep so I wouldn't feel it anymore.
Everyone assumed my drowsiness was due to the prescriptions and bodily injury. A week and a half later I stood in the middle of an aisle at Target, and came undone. My body wash had been repackaged. I didn't know if it was the same, I didn't know why it was changed, I didn't know if I'd like it. As I stepped back and looked at all the shining bottles lining the shelves, I started to panic, what would I choose, would I like it? I started crying and couldn't stop.
The thing is, I knew it was crazy. I knew it didn't make sense. But it didn't matter. I couldn't stop.
I went in to see my family doctor. She mentioned something about brain injuries during accidents and how I'd have to go to a rehabilitation hospital and would not be going back to work for some time. I heard her words, and it terrified me. As a single mom I couldn't be missing work. I cried, knowing as an inconvenience I'd be fired. To me, it didn't make sense why family and friends were freaking out about a brain injury. My job was on the line.
crazy with a touch of paranoia
One of the worst days of my life, was the day of the appointment with the traumatic brain specialist at the rehab hospital.
I freaked out and didn't want to go.
There was something wrong with me and I knew it. I didn't need anyone else to tell me what crazy is. Besides, I would have to get dressed to go and I couldn't. I laid in bed in a heap of clothes crying. I didn't know if I should wear a tank top or short sleeves. Although August, I worried about the hospital being cold and if I needed to bring a jacket, or wear jeans. On top of that, there's so many colors to chose from. How do I pick the right things? How do I know what I pick is right?
I began wondering what the hospital does with crazy people. Do they lock them up, drug them, take away their children...I resented having ever read The Bell Jar.
traumatic brain injury diagnosis
I looked at the doctor debating if I could trust him enough to tell him what was going on. I couldn't keep my thoughts straight long enough to do so. My mind was so garbled. Humiliation burned my cheeks knowing the nurses probably told him I was in tears handing back the medical forms I was unable to fill out. Not seeing other options and knowing I needed help, I laid it all out.
The headaches which never go away. Feeling as though someone took a potato peeler to my brain, it hurts so bad.
Sleeping 20+ hours a day.
Nausea and dizziness. The bed spins and rocks when I'm laying down. Closing my eyes makes the bright lights come.
Ringing in my ears.
Static vision - it looks like I'm looking through an old tv.
Sensitivity to light, sound, movement.
Can't quit crying.
Can't follow conversations. Be talking and suddenly not know the next word I was going to say or what I had just said, or what the conversation was even about. I can't find the word I'm looking for or need to say but can define it.
Can't make decisions or know what to do.
When I finish speaking, the doctor looks up from his notes and tells me I'm not crazy. I don't buy it. He tells me I have a traumatic brain injury. He looks at me and I can see a sense of sadness in his eyes, but I don't understand why. I'm going to get better. I'll be just fine.
The first appointment I had with the Speech Therapist, she asked if anyone told me I sheared my brain.
Of course not. I did what?
She looks at me and says the doctor probably went over it with me. I'm at a loss for words because if he did, I may not have remembered.
She explains to me how the brain sits in fluid and when it's whipped back and forth suddenly, say hit from high speeds from behind, the fluid can't protect the brain. The brain hits and rubs against the inside of the skull.
Another word for it is Diffused Anoxal Syndrome. The pathways in my brain are strained or broken. Some will heal with time, some will reroute, but what I don't regain I'll be shown ways to handle and deal with it.
For the first time, it dawns on me I'm not going to be ok. This isn't the flu, it isn't a cold, or a broken bone. I'm not going to be the same.
I decide right then and there it's not going to be me. I'm not going to turn out like everyone else. I will do whatever I have to do, and I will figure it out and I'll be just fine again.
I was going to join the ranks of those who doctors told would never walk again, and then they did. I failed to consider all those the doctors told, and who never did, and not because they didn't listen or try.
I get worse, but they call it better
I leave my car running. I can't find my kids when they're in the basement playing. I get lost in my neighborhood, on my block, on my street. I blow dry my hair but don't stop until my scalp is burned and my hair crunches. I freak out in a thunderstorm. I lose my train of thought and can't remember what I'm talking about or what people are trying to tell me. I talk to someone I haven't seen in weeks and they talk about what we did yesterday. I'm a mess.
I tell the doctors they need to do something. There is something terribly wrong with me. I'm supposed to be getting better, but I'm getting worse. As I tell them, I pray there is something they can do to make it stop. To halt it's progress and get the damage to reverse.
The brain injury specialist smiles and tells me I am getting better.
Obviously, he's not listening. In frustration, I start over, telling him what's going wrong with me. I tell him he has to understand so he can figure out how to fix it.
His smile changes to a serious look as he tells me it only feels like I'm getting worse, but in reality I was so far gone before to know how bad off I really was.
I believe what he says. I lean against the back of my chair and take a deep breath. He continues to talk and I know I should be listening but I can't.
All I can think about are other times in life, I've been as truly terrified as I am now. There aren't very many.
living with traumatic brain injury
The hardest thing about living with a TBI is feeling what I do, doesn't feel like me. As though everything I do is wrong, merely because it's not the way I've always done things. The way I think and learn and retain information, isn't the same.
I always figured if I had to relearn how to think or do things, it would be in my old age from a stroke. Then, I'd have plenty of time to during the day. I didn't know it would happen from a brain injury in my 30's while I'm a single mom with young kids to care for, and a demanding job.
A lot of people try to be optimistic and hopeful. They tell me I'll figure it out. I'll get through this time and learn a new norm. It fails to encourage me, but it does strike a cord of anger and resentment. Like it's that easy.
It didn't feel ok. The last thing I wanted to hear was others telling me it was or would be. Not when it wasn't ok with me. Far from it.
Acceptance hasn't came as a sudden decision. Acceptance started to come in small little ways at times where it didn't hurt me anymore to have to use obnoxious time-consuming strategies. When my resentment of them diminished and against all odds, I started embracing them, needing them, and not hating myself for it.
I had to learn to lower the bar for myself. To give myself a break. It was hard. I wanted to be the same person I've always been. The problem is, I'm not.
I started letting go of frustrations and getting upset, I couldn't do what I thought I should. Being angry and upset wasn't getting me further along. As I did, I started to gain excitement in my accomplishments. Because there are accomplishments. No matter how small and pathetic they may seem, they're huge. They are what gets you to the next. They lay the foundation. Once I understood and felt it, I started to be proud of my progress.
There is also a discipline to learn. Sometimes I'm busy and I'll think I won't have to use a strategy, such as writing something down to remember. But I'll forget it. I have to do what I know will be successful no matter how small it may seem. It's worth feeling good and confident, instead of frustrated and upset.
not giving up
"The harsh truth is there are no benefits, no positives, for brain damage", I still remember the the pressure in my chest hearing those words. I snapped back at the doctor, "I like things sugar coated."
As the doctor went on to explain, even a heart attack can lead to someone feeling better, but brain damage is never good and doesn't provide benefits. Ever.
While he's right in the medical sense, I will tell you he's flat out wrong in others.
Life has never been harder, but I also love and appreciate so much more about it. I take better care of myself now than I ever have. I'm aware of how events and situations affect me.
Walking around feeling a little broken, can make you more aware of the brokenness in others. Even those who are blind to it themselves.
I thought when the year mark hit and I knew the vast amount of healing had taken place already, I'd be depressed. But I wasn't. I was truly happy. I wasn't where I wanted to be (back to pre-accident self) but I had made it. I had learned to live again. I thought about all 365 days I had endured, and my sense of accomplishment soared.
Having a traumatic brain injury, has made me fearless in ways. As hard as it's been to survive and get back to life, I know I can face anything. The empowerment I've gained has been unreal.
What I have to remember is I'm still me. Maybe I'm not exactly the same, but I don't need to be. God doesn't need my strengths and abilities to use me. He can use us all, right where we're at, in ways we never could have imagined.