Our Teach Believe Inspire Award winner for June is Linda Arms, an advocate for brain health for the past nine years. Arms has created a website, The Brain Fairy, that is a resource for TBI survivors and their families/caregivers. We applaud her for all she has done for the traumatic brain injury community and are pleased to bring you more insight into her story.
‘A Balancing Game’
Q: You have said that after your accident it became difficult to think clearly and keep thoughts in your head. Did it become easier over time naturally, or did you have to consciously work at the process?
A: I think it became easier over time, both naturally and as a result of working on it with prescribed therapies or me pushing myself to do things on my own. It has been a very slow, gradual process. It’s been nine and a half years and I’m still seeing improvements.
At first, it was all I could do to deal with just the very simple tasks of living such as getting up, getting dressed, eating and having some interaction with family members and medical providers. Everything I did was slow, methodical action which required me to focus on my movements and the process I needed to follow. Most things were no longer automatic.
I needed a very quiet environment and I needed to be well-rested when I did have interactions with people or when I did something that required some thought. I made lots of notes to help me keep on track when I did need to think about something. I made notes before I made a phone call to make an appointment with the doctor. It seems like a simple thing, but if the call did not go as I rehearsed, I couldn’t think about what needed to be said or questions I needed to ask. I would tell the person on the other end that I would have to call back.
The easiest thing would have been for me to sit back and let the world go by and not try. That’s not me. Even though it was very, very difficult I kept pushing myself but knew when I needed to step back and rest.
Q: Did you go through speech therapy after your accident? How did you overcome the frustration of not being able to communicate like you once had?
A: I did not have speech therapy after the accident. I could speak, but a lot of my vocabulary was gone. I spoke very simply and very slowly. As time went along, I slowly started remembering the bigger words. When I did, I had to concentrate on pronouncing them correctly. Even now I remember words I haven’t used for a long time, and it’s kind of exciting that I still keep expanding my vocabulary.
Q: Explain the nickname Mina Kitty. Is it a source of comfort when you hear it or more of just a lighthearted way to deal with your injury?
A: My middle name is Wilhelmine, named after my German grandmother. Before the accident, my husband would sometimes use the nickname of Willy. Somehow that seems to denote a strong person. After the accident I was no longer Willy. I was not the same person. I was weak and always tired spending most of my days at home.
A few months after my accident, I told my husband I felt like a house cat. I’d get up in the morning and slowly move about the house. I’d often lay down or nap several times throughout the day, usually finding a spot other than the bed so I wouldn’t spend all my time in bed. I’d sleep on a couch, a recliner or sometimes even on a thick rug in the basement where the sun shines in.
And so I became Mina Kitty – a new nickname more appropriate for the way I lived. I think I preferred this name because it was a more lighthearted way of dealing with my injury.
Q: Was there information you wish you would have had in the first year after your accident that would have helped you understand your condition better?
A: It would have been nice to see more on the web that was readily available and easy for someone with a brain injury to comprehend and to view with visual processing problems. I did have a very good neuropsychologist who, along with his occupational therapist, did an excellent job explaining my condition and the challenges I was facing. Unfortunately, I was able to work with them for only a few months because my insurance did not cover their services.
Q: Are you surprised that after your injury in 2006 there was still so little information easily accessible about TBI?
A: I can’t say I was surprised that so little information was available in 2006. I didn’t have any real expectations of what should be available, and I certainly did not “get it” when I heard about others with brain injuries having long-term problems. I have a friend who had a TBI several years before I did and, before my own accident, I can’t say I was sympathetic to the problems that my friend was relating to me. I just didn’t understand how her problems could exist after several years. I definitely understand now that I’ve gone through the experience myself.
Q: Why did you decide to create the Brain Fairy website? Can you explain who it aims to serve?
A: After my TBI, I was in disbelief about how little information and resources were available to me. I know I kept thinking “something has to be done” to help people like me. I hoped to establish some kind of organization along with help from others but that goal was not possible to accomplish for a variety of reasons.
Three years ago, I decided to attempt to create a website. This was a big challenge. I needed to acquire a domain name, figure out where to host it and how to build it with the tools provided by the hosting service. My background is in IT, but it was nearly 6 years since I worked in the field because of my TBI. My cognitive skills were better but still not anywhere near what they used to be. For many months I researched and made notes and slowly started putting the pieces together. Then I started writing some very short posts not really expecting anyone to pay much attention.
I was pleasantly surprised when I started getting visitors. In the three years since the Brain Fairy started, I can see the improvements in my ability to write. So, in many ways, the Brain Fairy was for me. It is therapy to get better. It has challenged me to stretch further and improve my capabilities without having a commitment to someone other than myself to succeed.
It is also very much something I want to share with others affected by brain injury. This includes the survivors but also their families and caregivers. I’d also like medical providers to pay attention to some of the articles I’ve written so they can understand better what we are dealing with and what we need from them.
I originally started the site for traumatic brain injury survivors but I quickly learned that our challenges are very similar to those of people who’ve had other events or medical conditions that affect the functioning of the brain such as stroke, aneurysms, brain tumors and neurological diseases that affect the functioning of the brain.
I’d also like to explain the Brain Fairy name. About four years ago, I was talking to my husband about some problems I had that day and I said “I guess the brain fairy just wasn’t helping me that day.” That’s where the name of my website came from.
How our brain works and how it repairs itself is still a mystery. Medical professionals can do much to help in recovery, but there is still a mystifying process that brings our brain back to a better place after a brain injury. For me, the “brain fairy” has been that elusive thing that has caused the problems and healing associated with my brain injury. I do not understand how it works, but slowly things have worked better in this mysterious world of my brain.
Q: You have said that your recovery process made you realize what is truly important in life. How do you feel now that you are able to focus more on the parts of your life that are the most important?
A: Right now relationships and experiences are very important to me. Before the TBI I was very driven in my career to excel. I had very high expectations of myself and everyone else both in my job and my private life. After the accident that all went away immediately. I could not think about my job because I did not have the capacity to think about it. Before, when I was sick I just kept going. With a TBI, it was impossible. The door slammed shut on that part of my life and never reopened.
I spent the first years staying at home as much as possible or supported by my family when we went out. There were many medical appointments that were a necessity. Other than that, I’d go out as little as possible because the world was too overwhelming. I’d go out for my family even though I did not enjoy it. I had to prepare by resting before so I could manage the outing. I wore ear plugs to filter the sounds. I faced the wall in the restaurants so I didn’t have to see everything and the movement of the people. It was really bad.
I feel I was removed from the world for several years, so now that I’m so much better I have been concentrating on rebuilding relationships and having good experiences in the world around me. In the last few years I’ve slowly rekindled friendships that I had to let go. I also look for opportunities to have rewarding experiences.
I’m also enjoying the freedom I now feel in being able to get back out there and drive to places I’d like to go to without having to feel like I’m taking a huge risk to go out driving. I just went through another year of vision therapy that has made a huge difference for me in getting back out and being more comfortable and confident.
Q: Traumatic brain injuries can vary greatly from one person to the next, but is there anything you learned or came to understand through your recovery process that you want others to know?
A: You have to expect a very slow recovery that can take years. You have to take good care of yourself by eating properly, getting sufficient rest and limiting your exposure to things that cause your brain to become overwhelmed.
Keep challenging yourself, but don’t go overboard because you pay for expending too much energy. When you do challenge yourself, do so appropriately so you don’t put yourself or others in danger or cause more problems for yourself. Know your limits. Realize your cognitive energy can be depleted by too much cognitive work, too much physical activity or by too much stress or negative emotions. It’s definitely a balancing game.
I also think you have to keep looking for ways to improve by learning about different treatments and finding ways to participate in them. I never had someone like a doctor or therapist who identified what needed to be done next in the last nine and a half years of recovery. I had a collection of providers who had suggestions and then I decided what path I needed to take.
Do You Know an Inspiring TBI Survivor?
If you know of someone who deserves to be nominated for the Teach Believe Inspire award, or if you need help in a case involving traumatic brain injury, please contact us by calling (877) 537-4340 or contact us online.