Each year on January 15th, I look back on my progress. I have much to be thankful for. I am not living my life from the couch as doctors told me I would be. I am living a full life filled with activities. When I look back through the years my progress is very clear.
Soon after my brain injury, I slept most of the day. I get through my days without a nap now. I do take time to rest several times a day. I no longer suffer the pain of a constant migraine that hovers between an 8 and 9 on a scale of 1-10. My migraine is now a 1 or 2. I don’t have to cruise the furniture like a toddler or have family members hold me up to walk. My balance is good and I can walk on my own.
I don’t stutter at all anymore. My word finding skills are much better too. I can speak fluidly without having to stop to find words to express myself. My special relationships are better too. I can read a map without getting turned around. The pain in my neck and shoulders is no longer debilitating. I don’t have to get in the spa 5 or 6 times a day to loosen them up. I can read and comprehend without reading the same sentence over and over. I can write legibly and rarely transpose letters. I have fully regained my sense of taste. I no longer have to load food up with garlic in order to be able to taste a slight hint of it.
I have more energy and am able to plan things out so I get the rest I need. I still over-do it, but plan a recovery day to replenish myself. I still have some memory problems, but I am able to cope with them well. I am able to remember well enough to carry on a conversation without asking for people to repeat themselves constantly. I do still hear “I already told you that,” but not multiple times a day. It happens once every week or so now. When I’m in the city where there are big parking lots, I still need to park close to the entrance so I can find my car.
I still have light sensitivity, but it is not as bad as it was. I don’t need to wear sunglasses in the house with all the curtains closed. I can go without sunglasses when I can control the environment. I am most affected by fluorescent lighting. The sunglasses I wear now are a lighter tint and they make it so I can spend a longer amount of time in other environments.
I don’t have to stay home to avoid overstimulation. There are still events that I avoid, but the list is much shorter. I avoid events with loud music. I can now handle crowds and busy environments. I still need to be aware of my limits and leave before I become too over-stimulated. I still use earplugs when I go to the movies and prefer to watch at home where the volume can be controlled. I still have to close my eyes when there are fast moving scenes or really bright scenes. That’s not really a big deal.
All in all, after 8 years I have had many improvements. My brain injury has been quite the learning experience. I have experienced first-hand what it is like to have a learning disability. I now know what a really bad headache is. I thought I knew before my brain injury, but I had no idea! Pain that makes you unable to function and causes vomiting is way different than any headache I had ever experienced before. I have experienced the fear of not ever being able to think clearly again.
We have all had the experience of not being able to come up with a word or someone’s name, but having that sort of trouble day in and day out is an entirely different story. I wanted to go back to the way my life was before my brain injury. As I moved through different phases of anger and grieving, I realized that I didn’t want to go back to who I was. Going backwards is never a good goal. I needed to move forward and become the person that I would naturally become through my experiences.
How did I make so much progress? There were many factors in my journey forward. One of the biggest factors was my refusal to accept less than I wanted. After lots of physical therapy, speech therapy, occupational therapy, massage, vision therapy , chiropractic and cranio-sacral therapy combined with every drug you can imagine, the results were not acceptable. I was still told I needed to accept that most of my life would be spent on the couch.
My neuropsychologist recognized that I was not willing to settle for that. He referred me to his college roommate who had gone into neurofeedback.
Neurofeedback was the missing piece in my recovery program. After only a few sessions, I could feel things starting to change. By the end of my first 20 session block, I could see that I was going to be able to have the life I wanted. I told my therapist that I had to learn how to do this and help other people experience the wonderful changes that I was experiencing. She said, “Rachelle, let’s get you better first.” I started doing daily neurofeedback sessions for myself with her guidance and things continued to improve. After 2 years of treating myself, I learned how to treat others. Being a neurofeedback therapist is extremely rewarding for me. I love helping people’s lives change!
Now I have mostly a hidden disability that I can manage with strategies and accommodations that people don’t usually notice. For instance, I keep my client load down so that I have enough energy to meet their needs. My office is a controlled environment with full spectrum daylight dimmable lighting. I continue with neurofeedback sessions for myself that keep me working at my peak performance potential.
Recovery takes time. Recovery has been difficult. And the further I get in the process, the harder it is for me to see the incremental changes. Looking back years helps me to see how far I have really come. Seeing the distance I have traveled gives me confidence, strength and hope. I look at life very differently now. Life is good.
