“I’m not able to picture things in my mind. My son described what it feels like to remember what something looks like as like a TV screen in his brain, where he can see the object, rotate it and move things around. He describes it feeling as if it’s in the front of his mind. I have no understanding of that. When I try to remember where something is I feel a tugging at the back of my brain, but I can’t picture anything. For years, when I lost something my mom would say – just walk yourself through what you did, like this was something I could do. I can’t walk anywhere in my mind, or visually picture things, let alone recall them.
I’m not able to remember scenes in movies like other people. There is no movie where I could recite any lines from and most movies I wouldn’t remember what happens. This made socializing hard in high school, where recalling movies and events was a major part of connecting with friends! Whenever my group of friends expanded beyond 3 or 4 people I would get overwhelmed with trying to remember who I was with doing what, and couldn’t have any of the conversations of “recalling” things with people. The stress of trying to remember who was included, and who wasn’t, was overwhelming. I’m not able to recall sequential events when given memory tests, that don’t have triggers/and reminders.
Sorting socks is hard for me. Organizing drawers with lots of little things in is awful. It’s not just the visual memory that is hard, it is visually processing information. So I learned to do whatever I could to avoid those types of activities.
Facial recognition is also impossibly difficult for me! When my stress level (visual, physical, or emotional) is high, sometimes I don’t immediately recognize my own family members. When my children were little, and stress was out of control, I would be afraid to go to the park with my son and his friend because I would “lose” his friend, by not remembering what he’d look like.”
I wrote all this before I started vision therapy. My plan was to write a “how to” book for how to live without a visual memory because I did not believe it was possible to change any of this. For 30 years.
I have a Diffuse Traumatic Brain Injury and was in a coma for 8 days in 1985, when I was 10. I had significant head trauma, coma, seizures, and left sided motor paresis. Every two years I received cognitive and educational testing. I wore a patch over my eye for a year to stop me from seeing double. When I stopped wearing the patch, I just got in the habit of covering one eye so I could read.
In 1986 I was assessed by a psychologist and found “not to qualify for special education.” That year I had “significant difficulty reading, doing schoolwork and remembering;” according to the same psychologist. Difficulties were noted in auditory integration of complex information and attention was directed to possible difficulties in new verbal learning. I was diagnosed with auditory verbal dysnogsia (The recommendation was for monitoring of my “emotional well-being.”) At the time, my parents were focused on the positive, which was that my IQ was normal and that my “scores had changed very little prior to my injury and can be attributed to the effects of time and maturation rather than head trauma.”
I wasn’t able to play piano with my left hand. I was an avid reader, as long as I covered one eye.
In January 1988, I received a psychoeducation assessment from an MD. In this I was described as “sensitive, restless, impulsive and demanding; poorly organized, and difficulty concentrating.” I was described as “a 12 girl with intellectual potential in the high-average to superior range….Difficulties with organization are noted, particularly with integrating and utilizing her fund of information. …. Hopefully some accommodation could be made to allow her to demonstrate her knowledge under less stressful circumstances. Her emotional climate needs to be monitored.”
It was all good news for my family. My memory problems sort of became the family joke. Then, I started college.
The first time I saw a list of my symptoms, and personality traits, in was in an abnormal psychology book, my sophomore year in college, at Pacific Lutheran University (PLU). I had never looked at the symptoms listed out so clearly before. It was every complaint my parents had about me for the ten years before. Couple that with trying, over and over, to memorize bones and muscles only to fail brought me to the school counselor, who referred me to another neuropsychologist.
By the time I made it to the appointment, I was a wreck. I described all of my symptoms – all the times I can’t remember where I parked my car, where my keys are, the struggles with memorizing at school. He ran multiple tests on cognitive functions. I didn’t mention my double vision.
It was 1994, at that time you did not put the “individual” before the disability. He said I’m disabled and I had such a severe memory disorder that he couldn’t figure out how I had made it this far in college. I had no new trauma since 1985, so there was nothing available to me in terms of rehabilitation at that point, as far as I was aware. I used the educational assessment to transfer to the University of Washington and get set up with accommodations in school.
Still, just covering my eyes, preventing the double vision, as needed. I had just gotten used to my prescription changing every year and getting worse.
At UW I got to take tests in a private room, that didn’t have any fluorescent lighting. I also had a personal note-taker for my classes and I was taught how to work with accommodations. My grades jumped from C’s to A’s. The change in environment made all the difference. I majored in psychology and learned how to learn with a “severe memory disorder.”
I went on to graduate school, where I continued receiving accommodations, but there I had to go to each teacher to assess and see how the lighting was in the classroom, deciding if I needed to ask for them. After grad school, I worked in educational research and evaluation. My masters project was on an evaluation of high school principals implementation of IEP’s and then I worked for WestEd; conducting evaluations on school programs.
In 2004, I started having trouble keeping a job because my disability became unmanageable. Every position and job I’d had, prior to 2004 had been accommodating. Then I started working at a place that was making me very sick. I wanted to cut my eyes out they hurt so badly every day and I knew that seeing was making it so that I couldn’t think straight. It wasn’t enough to cover one eye anymore. I had to move between five different buildings and remembering where I was going, and where I started was interfering with my doing my job.
Near the end, when my eyes stopped working well, I couldn’t even walk in rooms with any fluorescent lighting without getting immediately ill. At work I was hazy like drugged. I had significantly and swiftly deteriorated since my interview that my boss was worried for my safety.
I couldn’t work anywhere. I was seeing migraine specialist after migraine specialist. I went to the ER so many times. Finally I ended up in an outpatient – treatment program for mental illness. They gave me medication that helped. I attended my first support group, but it felt weird. So many people with mental illness seem to focus on memories. Overcoming traumatic memories is sure not my problem. I was just talking about my head and my eyes. Everything was sparking.
Eventually, I made it a behavioral optometrist in Portland. After bothering him over and over again with appointments, he finally saw something. Optometrists have a hard time seeing the turn in my eye for convergence insufficiency, and esophoria, because I’ve had this for so long that my eyes know how to work around it. He finally saw it and reluctantly referred me to vision therapy. He warned me that it may not work because it has been so long. I did not have much hope.
Vision therapy was torture. I couldn’t read more than a line before getting a terrible headache. They said I was probably not the right fit. I wasn’t able to drive at all then, my eyes were so frequently doubling. I was getting dizzy and sick. When vision therapy didn’t work, they referred me to BIRC.
At BIRC, I found occupational therapy to be really helpful. Eventually, I got prism lenses for my eyes, but they still hurt a lot. My occupational therapist referred me to Vocational Rehabilitation. Here I had someone help me with getting a job, and how to communicate with the job about having accommodations for my disability.
I got a job through Voc Rehab, in Chicago, and learned to live again with this disability.
My first day in Chicago, I had to ask for an accommodation because there were fluorescent lights everywhere and I was starting to get sick.
Her response: “Can you even do your job? Getting rid of fluorescent lights is an undue hardship.”
I had just flown out there. This is a job for the Federal Government enforcing nondiscrimination laws. I had to scramble and figure out what to do. I called voc rehab, called the Agency’s HR office. I was both scared and outraged.
There were moments where I hated every thing about having an invisible disability. This was one of them. I was caught in a crosshairs where I have to “prove” my disability –and “prove” I can do the job. And I recognized that the person I was proving it to would put her ego into it. If I prove I have cognitive challenges that impede my daily life, then that itself means I can’t do the job. And if I prove that I can do the job, that proves I don’t really have a cognitive problem. These legal constraints are very difficult to maneuver with a brain injury, when you are new to a job. But if anyone knows how to maneuver with a brain injury, it’s me.
For so many years, I believed it was all fluorescent lighting that had caused my neuro-visual breakdown. When I requested accommodations for fluorescent lights, because I’d involved a lawyer, my boss dramatically, sent an email to the materials guy to replace the lighting on the “entire 5th floor.” This was my first sign that this wasn’t going to be easy. But I got my accommodation and kept my job. It’s been ten years that I’ve worked for the Agency now.
2016-2019: I had toxic mold exposure, in my house. It affected my eyes and the accommodations at work stopped working. I started hopping from optometrist to optometrist to try to take control of my eyes. It was starting to feel like I wanted to rip out my eyes again. I was told I had “older” eyes and maybe some sort of vision therapy would help. But it was unlikely. I didn’t seek out Dr. Medeski until I was absolutely desperate and feeling like I couldn’t drive or really live a normal life anymore. It was starting to feel the same way as it did back in 2004, just before I stopped being able to drive.
July 2019: Dr. Medeski accepted me as her patient and I started to work with Krista in vision therapy. Dr. Medeski did not make any promises, but she told me why this might be different than my last experience and she gave me hope. This time I started with the integration of primitive reflexes.
From the start of doing these exercises, I could feel a change in my thinking, seeing, and perception – and overall comfort with the world.
Vision therapy started slow, really, really slow and I was doubtful of how such small things could make a difference. But it did. It started working and then it started feeling really good.
- It is the first time since 1993 where I haven’t needed to work in absence of fluorescent lighting. I can work around the lights, for longer amounts of time, without it affecting my brain and my thinking.
- It’s the first time in ten years where I can handwrite for a while and not get sick, or dizzy, or tired.
- I started being able to drive again, without getting sick.
- The way I use my mind to get through daily tasks has changed.
- My future has become more open. I don’t live in fear of not being able to recognize my kid’s friends.
- My teenagers are commenting on how they’re just realizing I’m funny now. I’m relaxed enough to joke around my thinking is clear enough to find things funny again.
- I need much less accommodations at work. I can work through meetings with fluorescent lighting and be able to both do my job and have a life.
August 2020: I have graduated the vision therapy program. For over a year, I’ve gone to weekly appointments to my vision therapist, Krista, and Dr. Medeski.
It’s been about so much more than my eyes. I was mostly compliant with my home support, but some weeks were harder than others. Most importantly, when the weeks were harder, I felt empathic compassion. Of course doing the work is important, but Krista always looked for a reason why it was hard and adjusted the plans she had.
It has helped with things like “stuck thinking” and perseverations. I feel like I can understand other perspectives better without getting tunnel vision and I can attribute this to the vision therapy. The therapy has been psychologically more beneficial than any other type of therapist I’ve seen. It’s hard to say why but when your eyes team and accommodate not only do you see better, but other people see you better and treat you better.
I wish I knew about vision therapy when I was a kid, but overall I am so grateful to have finally found an answer to what has been hard for me my whole life.