What your life was like before your brain injury?
I finished college and wasn’t sure what I wanted to do, but I knew I wanted to go someplace new and have new experiences. So, I began thinking about teaching English in Europe. My mom and I had traveled to Budapest, Hungary the summer before and I loved it. So, I found a placement agency, that happened to be in Portland, to see what I needed to do to teach in Hungary. Turns out they needed someone in just 4 weeks! So, I quickly got my ESL teaching credentials, packed my bags, and I was off to a small town called Papa, Hungary. I immediately loved everything about it. I loved the town, the people, and the school. I taught history and English to kids in grades 1-9. I preferred the older kids because I felt I could do fun things with them.
Your brain injury happened in Hungary. Can you tell me about it? What happened? When?
My initial brain injury was 2 years ago while I was living and working in Hungary. I was out with friends and we were walking up some steep stone steps when I fell backward. I don’t know how it happened, or remember anything for the next 5 weeks, but I’ve been told the rest. Initially, it seemed I just had a subdural hematoma, and after surgery, I should be fine. Very quickly after that first surgery, my brain began to swell and bleed, and I needed another surgery to remove part of my skull to allow for swelling. I was put into a medical coma, and my mother was called and told I had a high chance of not surviving. She flew for 20 hours to get to Hungary and has been by my side ever since. I remained in the medical coma for 3 weeks until the swelling and pressure in my brain subsided and I was taken out of the coma. It takes quite a while to fully wake up from a coma. When I woke up, I could clearly swear but could only say “ma” and answered “puff faff” to everything because I had severe aphasia and apraxia. I was in the ICU for 6 weeks and then moved to a rehabilitation hospital for 3 weeks.
One day my mom noticed that I had the same bandages on my foot from several weeks ago. She took the wrap off and noticed I had a bedsore on my heal that went to the bone. It had not been treated. At that point, my mom decided to see if I could finally fly home. I was only cleared to fly ONE hour before our flight left for the United States! When we landed in Portland, we went directly to the emergency room. I was put in the neurology unit at Providence and later treated in 4 K, which is the rehabilitation part. Here’s something kind of cool. They printed a 3D image of my missing skull, and I had the bone flap replaced. So now part of my skull is plastic. Upon arriving home, I had a 40-degree bend in my right knee due to a contracture, which made walking impossible. I went from a wheelchair to a walker, and then a cane in addition to 3 surgeries on my knee and a lot of PT. Luckily, I can walk nearly normal, having only a 5-degree bend now. After being released from the hospital I spent about 3 months at a wonderful day rehabilitation facility. I received PT, OT, speech, and counseling. While at PRA I had my first grand mal seizure and I have had several since. During one seizure I fractured my back and had to wear a clamshell brace for 3 months. That was not fun. The worry and fear of having another seizure is hard.
The language and vision parts of my brain were damaged. While my speaking and mobility has improved a lot, I still struggle with spelling, memory, speed of processing and some cognition problems. I am learning to deal with my “new normal”, but at the same time continue to work to gain back skills that will allow me to get back to teaching.
Can you tell me your experiences working with different clinicians?
I have had many physical therapists (PT) both while in the hospital, and as an outpatient. Originally my leg, with the contracture, was the main focus. I had over a year of physical therapy on my leg to gain strength, range of motion, and mobility. Also, the PT’s worked with improving my vestibular system to help with balance. After my spinal fracture I had daily physical therapy to gain strength and mobility. Each PT had their own approach and ideas and I improved with them all. I have had and continue to have speech therapy. Initially they worked mostly on my speech itself since I had severe aphasia. As my speech improved, I now work on working memory, spelling, reading, and speed of processing. I have had several speech therapists and I feel it’s important to have different clinicians because each one has something different to offer. When I have so many areas to work on that is important. I had a year of vision therapy and I was so amazed at how much they taught me about how my brain drives my visual disturbances, dizziness, and double vision. In all I have nothing but gratitude for all the clinicians. Every single one was dedicated to helping me.
Are you only now working with a speech pathologist, or are you still working with OT and PT?
I graduated recently from both PT and vision therapy. So now I just have speech.
How has your life changed the most through everything you have been through?
My whole life has changed. I don’t feel like an adult because I can’t drive or do many of the daily basic things without supervision. The little things that everyone is able to do without thinking about are now things I have to pay attention to. So, it’s not just my humanity, but also my “adultness” that is lost- hopefully temporarily. Everything I do is related to trying to get better. I’m trying to get back as much as I can, but I know that I won’t necessarily get back totally to where I used to be, but I am working hard to be functional and independent.
There are a few positives with my brain injury. I have learned to share my feelings more and I’ve gotten more thoughtful and empathetic. I tell my family how much I love and appreciate them more now. I do what I can to help out without being asked. I have always liked animals, but now I’m crazy about them. Early on I often felt like a helpless little animal, or baby, that needed care. Animals are the same way. I have a cat named Hank who needs me and looks to me for all his needs.
Was there a turning point in your recovery where you started to feel, kinda like a “fire in your belly” where you felt invigorated to focus on your therapy?
Yes, there was. For the first year I wasn’t able to remember much. I couldn’t remember what I should be doing, or comprehend what was going on, so I just went with the flow. Then suddenly it was like my brain “woke” up and I was able to take charge of my schedule and understand why and what I needed to do to get better.
What accomplishments or achievements are you most proud of? (Both before and after BI)
I’m very proud that I was able to move to Hungary all by myself. I didn’t know anyone or have any family there. I just got on a plane to go to the other side of the world and I figured it all out and thrived. It went great and I’m proud of that.
Do you have any advice or wisdom you wish to share with others who are living with a brain injury? Any advice, not only for the individuals but their caregivers?
Post injury I’m proud of my ability to keep persevering, instead of wallowing in it. I will occasionally wallow in misery and feel angry about all I’ve lost, but it only lasts for a short time and then I’ll go back to work! When I get down, I just stop, take a deep breath, and reset. I’m also proud that I don’t get discouraged too often. When I make mistakes, I have to reset and focus again. Things don’t come quick and easily like before and I really have to work at things. If you are a caregiver, you have to be able to pick up on little things. I won’t say when I’m having a particular problem, but my mom or other caregivers will notice and help me with it. So, for caregivers check in often and ask specific questions. For the person with a TBI, you have to focus on one thing at a time. Also try to get involved in the outside world. With COVID-19 it’s hard, but it’s important to not be isolated.