Talking about past trauma isn’t easy - so we want to say thank you to Jess right off the bat. She’s a PatientsLikeMe member who suffered a TBI, and she recently talked with us about her experiences. Jess walked us through her accident and her diagnosis and went on to explain that even though you may not see visible symptoms, a person can still be suffering on the inside.
Will you tell us about your story and what happened?
On January 11, 2012, when my husband Tim, my daughter Amanda and I left home around 5:45 PM to pick up my friend’s children for church, we had no idea how much our lives would forever be changed. Statistics show most accidents are within 2 miles of your home, but I wonder what statistics are for accidents caused by your neighbor's teenage daughter.
I was driving and waiting to turn into the development where my friend lives, and as I looked in my rearview mirror, I noticed headlights coming closer and getting brighter. I started yelling to my husband that the car behind us isn't slowing down. I tried to hit the gas, BANG...I remember seeing the Ford emblem on my steering wheel, then next thing I knew...I was screaming for my daughter and husband. Then my husband jumped out of the car screaming at the other driver. All the while I'm stuck in the car and nobody realized how bad my injuries really were. My husband comes back to our car saying Jessie, it's our neighbors daughter. My heart sank.
The EMTs called for the "Jaws of Life," but I apparently wouldn't have that with our daughter there, so they somehow relieved pressure and got me out.
I was taken to the nearest hospital, where I was diagnosed with a concussion, neck and back injuries and sent home that same evening. Yes, same evening. The doctor instructed me to follow up with my primary within two weeks if I felt no improvements. So here's where it's gets interesting: went to primary within in couple days because I wasn't improving, and I was referred to neurologist and physical therapy.
I met with neurologist, and this would be the first time I would hear the term that would haunt me forever: Post-Concussion Syndrome. I was officially diagnosed, and I feel it's been a downward spiral since. I started PT shortly after, all the while I had perforated my colon during the collision and was never checked. It leaked for 4 weeks until it finally ruptured and I went into septic shock at home. The surgeon said if my husband wasn't home my daughter may have come home from school to find me lifeless in the bathtub. So the PT and head injury took a backseat to the rupture. That took many months of recovery, and my husband even put a temporary bedroom in our dining room because I wasn’t able to go upstairs to bed. That was the worse pain I ever experienced in my life.
I know I'm getting a bit winded here but there's just so much to my story, all because of a 17 year old driving while on a device...
Once I recovered from the rupture, the neurologist and therapists discovered how severe my other injuries truly were/and still are today. I've been diagnosed with Post-Concussion Syndrome, PTSD, vision issues, dizziness, short-term memory issues (which my last evaluation showed was severely impaired), and tremors, which we are hoping isn't Parkinson's. These are just a short list because I can't remember all of them at the moment.
How has that changed you and your family's lives?
This has changed everything! I was supposed to be going to school to be a dentist at this point. It's sad how somebody else can control your destiny for you and completely mess you up forever. I have God awful mood swings! I'm not the person I used to be, someone who my husband could count on that he could tell me a list of things to get done in a day’s time and I'd remember to do them. He doesn't like me to cook when I'm home alone because I forget things are cooking and walk away from them on the stove. I'm only 41 years young and trapped in the mind of a 90 year-old sometimes. This injury has put a lot of pressure on my husband to not only provide for us but to worry about me and my health. He knows my health is never going to get better, and there's always the fear of the long-term issues with head injuries. The unknown. All because of a 17-year kid, I'm sorry to keep saying it, but sometimes I can't believe it myself.
What are some ways you cope with your conditions?
I cope with my conditions by leaning on my husband, he makes me laugh a lot! I cry a lot. I would like to speak out more about not driving while on a device but I'm working on it. I've done therapy but I didn't feel as though the therapist "got it," if you know what I mean. I'm learning every day to cope with my condition and so are my family members. It's harder for them since this is a harder injury to see.
What is a good day for you, what's a bad day?
I wake up every day hoping is this the day I will be "normal" again? A good day is when I can fully function without snapping or flipping out on my loved ones, when I can actually complete a full grocery shopping trip in one trip, when I have the energy to do laundry and make beds, and when my vision issues don't act up to the point where I can't see.
My bad day, I feel I could dig my own grave and lay in it forever, when the ringing in my ears is so terrible (like this very minute) I have to drown it out with white noise just to sleep, when I have to take medication to sleep every night so I get brain rest otherwise, I only get 2 hours of sleep, the worst day is when I'm falling a lot and so dizzy it's like the drunk spins but without the party.
What do you want others to understand about living with PTSD and TBI?
The one thing I would like people to understand about PTSD is it's not something to brag about having, it's not glamorous, this is a very serious issue. I have panic attacks, nightmares and terrible anxiety sometimes so bad I won't leave my house because I want to avoid getting back into the car again.
I want people to understand about TBI. Think of it this way: go home, turn on every television in your home full-blast, radio same thing, have your kids play around you really loud, and have flashing lights - now get on the phone and try to pay attention. You can't. That's what's it's like to have a TBI for me. I can't filter things out, it's really hard to. Sometimes I just need a quiet break.
To sum it up for both, please don't judge a book by its cover, it may be masking a bigger issue. I hide my symptoms a lot more often than I should. Just because you can't see the injuries doesn't mean I'm not screaming on the inside.
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