What is your Name? Rachel 

 

Please tell us what happened that caused your Traumatic Brain Injury.: My daughter was a passenger in a daytime car accident, 400 yards from her high school. No drinking of drugs, but the driver was just going 83 miles an hour in a 25 mile and hour zone. The car took flight on a turn, and my daughter's side (Open Jeep) hit the telephone pole and my daughters head. The telephone pole broke into 3 places.

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When was your TBI?: 05 27, 15

 

Did you have any others since then?: No, thankfully

 

What progress have you made since then?: Immense progress. She died at the scene, was revived, so not only had the brain injury but blunt force trauma, but also from lack of oxygen for about 4 minutes. She broke her Neck, Her pelvis wasn't attached to her spine and broke so many other things. Interesting that on the outside of her body, she had really only one bit cut and that was on her chin. She was in a coma. For about 5 weeks she was in the hospital if I remember correctly (those days are so very blurry) and during that time she didn't move at all. That caused her coma scale to be so low, that no rehab would accept her. We were told she would be quadriplegic and in a coma for life. That we needed to put her in a nursing home. We had many comments on how because she was already 19, her ability to heal was very limited and not to expect much. If she had only been younger... etc. We understood, but were not ready to give up on her, and we pushed and pushed until we found a rehab that would take her. They were far from our home, but we were lucky to get in. Upon arriving at the rehab, she began to come out of her coma, into a vegetative state and then one day....she was mouthing the words to Mama Mia. WE KNEW SHE WAS THERE AND AWARE! It was a life changing moment.

 

How has your life changed since the TBI?:  Just about everything has changed. Work, where we live, how we live, the way we see the world. I am not the same person I was before. In some ways I have learned many things, and in other ways, the suffering has been intense for us all.

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What have you had to adapt to live your life with a TBI?: When dealing with my daughter, I know I cannot overwhelm her with multiple things at one time. Or if she is upset, then not at all. That emotions rise and fall very quickly once you have a TBI and to learn to ride that wave. We are responsible for so much more for her than we were or would have been at this age. We need to consider when we go anywhere, if they have elevators, flat ground, how far one needs to walk and so on. She is truly amazing, walking, but she tires easily. We don't travel much anymore. We stick closer to home.

 

Can you share some of the treatments or therapies you've undergone for your traumatic brain injury?​: She had anything that came our way and we could afford, We sold our home and cars in order to get her any treatment. Medical Massage is a very big help, as is sitting in a Sauna. Hyperbaric Chamber is amazing and she always said she felt the most clear and rested after a session, but they are not approved yet through insurance so it is crazy expensive. Wish we could work on that, because it is approved for other conditions. Neurofeedback is amazing. Vision therapy has been a huge help. Reiki, Healing, vitamins, Neurofield, and many more. We are just open about looking into every possible treatment that she is willing to do. We are trying to get a registry up on this site so that we can find and share trials so that people who are interested can learn about them. That is such a hard thing for locate, at least that is what we have found. I believe it we make this community strong and vibrant, those type of things will come to us. We were able to be part of one study and that study has changed her life!

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From your perspective, what has been the most effective treatment or approach in your traumatic brain injury recovery?: I believe it was the combination of both her endurance, strength and will power, and all the different treatments together. Each contributed in it's own way.

 

Do you feel you have recovered from your TBI? And if so, to what degree?:  It is a process and I believe the recovery continues and continues. We were told that she would plateau at 2 years and that definitely is NOT the case. We see improvement all the time. And we are 9 years out.

 

What has been the most challenging aspect of dealing with a traumatic brain injury?: That life as you know it ends. Yes a new one begins, but you have to mourn the old one and get through that. It is a process. The loss of friends is a really hard one also, life, gets very small and focused on only the healing. The effect it had on my other kids and how it took me away from them at very important junctures, even though I did my best! There is a lot of pain (in her case she had the brain injury and bodily injury and that we worry what will happen when we are gone. That I made some huge mistakes on the way. I was a momma bear and could come across pretty strong in protecting my daughter and trying to make her life better.

 

How do you navigate through those challenges?​: We have become very close. We talk and work it through as a team. The whole family. We also realize that everyone is doing their best, but the best isn't always great, it just is.

 

Who has been your support system? Tell us about them.: We have had so many people show up and provide help in different ways. My husband and I took care of her full time for the first few years, because a glitch caused us to, not qualify for the benefits in our State. It was 24 -7 work and my husband and I did shifts. Our immediate families were and still are amazing. Doing whatever they could to help. Friends and the community have really shown up to take on important challenges with us. But what you realize is that at the end of the day, we all have our challenges and it comes down to just a select few who can actually see you through the toughest spots. Everyone tries, but everyone has limitations. I have learned that I was probably terrible at this before the accident. now I believe my eyes are more open and understanding of other peoples suffering.

 

Are there any misconceptions about traumatic brain injuries that you've encountered, and how do you address or educate others about them?: Oh yes, when people talk to her, like she doesn't understand, Slow, spread out quiet speech. She remembers who she was and knows who she is now. She just wants to be treated like everyone else, but most often people shy away from conversing because they take her exhaustion of sometimes going on her phone as if she doesn't want the contact. It's the exact opposite, it is just everything drains her quickly and you have to allow her to get her energy back up. That people don't understand injuries if they are in your head and not visible, and have little patience regardless of how we try to explain it to them.

 

Can you share a particularly high (or low) point in your recovery?: When we realized she was "in there" and was mouthing the words to Mamma Mia. When her Halo was taken off. When her fixature was taken off. When we arrived home. When she was able to move out on her own. When she went SKYDIVING!!!, The day we woke up and didn't even realize it was the anniversary of her accident. Oh and so much more.

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The hard times were numerous, starting with the original phone calls, to the original emergency room stays, to being told that she would be unable to make progress. The rehab when she didn't sleep and was in so much pain all the time that they could not control it in any way. When she would become terribly down and friends would stop coming to visit. They were going away to college and moving on as they were intended to, but she was being left behind and it made her extremely sad. Every morning in rehab having to tell her (by morning I mean after a 20 minutes sleep because she never slept) what had happened, where she was, that her boyfriend broke up with her by phone, and that no, she could not get up and leave the rehab.

 

Now, in your own words, tell us anything else you like about your journey with TBI.: Wow, I feel like I shared everything above. I can tell you it was extremely lonely and confusing. That is why we wanted to start this non profit. Because everyone deserves a hand, understanding and some good buddies that really get it!