Let’s set the stage. Before my head injury I was studying dance and voice. However, before that I was a graduate of Northwestern University in Economics and Urban Studies (one major wasn’t enough); and then went straight to Columbia Business School were I completed my MBA (concentrations in Organization Design and Finance). Out of business school I did some consulting for a Big 10 Accounting Firm (this was a while ago…); then was an internal consultant for E.F. Hutton; then an organization design consultant for Delta Consulting Group (which was later purchased by Mercer).
However, when I hit about 28, living in New York City proved too much for my urge to dance. I had been an Irish Dancer as a kid and was a North American Champion twice. Those competitions were held in NYC, and as a girl I fell madly in love with New York. And in the days before Riverdance, the burning question for an Irish Dancer when watching dancers on TV was, “Could I do that?”
So I quit my job and started studying jazz, ballet, voice, and theater dance — and had a blast. I did some consulting for a bit after making this decision, but then wanted to focus solely on the arts; and I needed a “Day Job.” The day job I ended up with was actually a position on the night staff of an investment bank (Wasserstein Perella when I first joined). I temped and then ultimately was an employee of WP, which was a good thing because it provided health benefits. The job worked like this: you could sign up for the hours you wanted to work at night — say 6-10PM or 6-12AM or 6-2AM or you could be available for an all-nighter. When you walked in the door that night you didn’t know who you’d be working with, because the work was distributed based on your schedule and what the bankers needed. However, no matter what you did, the job would be a rush — because investment bankers are always in a hurry to meet a deadline — the FedEx deadline, the car delivery deadline, the early morning meeting, or the ongoing meeting. The coolest thing about this job, from a dancer’s perspective, was that you could take the late in the day classes where you dancing with people who were working on Broadway, go to work, get dinner and ride home. And the way it worked early on, if you worked your 35 hours early in the week — you were done. So two long 12 hours shifts on the weekend were the coveted shifts. I was very good at this work and while it could get intellectually boring, it was fun to be working with fellow staff members who tended to be aspiring actors, musicians, playwrights, or parents who needed a split shift to care for their children. The bankers were quite interesting as well, running the gamut from bright and friendly to truly obnoxious — but hey — that’s why they call it work!
One morning in May 1994 I woke up with what I thought was a bladder infection (that burning sensation while urinating); I may have had a slight fever. The last thing I remember was thinking, as I rose from the toilet was “Damn, that still burns.” The next thing I remember is arguing with the EMTs that I didn’t need to go in an ambulance. The thud of my falling body alerted a friend in the apartment that something was wrong. He found me lying flat on my back in the apartment (unfortunately on a thin carpet over linoleum over cement). He started asking me questions and when he asked where I lived, and I said Youngstown, Ohio — he called the ambulance. I went to a local hospital and recall being just a bit disappointed that there was no siren.
I was in the hospital for a week. They never did find out what caused the fever (lost the first urine sample). I have incomplete memories of that week. But I did have bleeding in the right temporal lobe, a hairline fracture on the bones that support the middle ear, and the diagnosis of concussion. They said I’d feel better in a few months.
I went on full-time disability for six months, believing that I’d be cured in that amount of time. Little did I know. Things I noticed in the first few weeks — I couldn’t read complicated texts, so I went from reading Alice Miller to finding the joy of the regency romance. (I still enjoy them). While I could write and talk OK, I couldn’t focus for long. Things that I used to do without thinking — for example, when I did my laundry in my building I’d run out once my clothes were in the washer and go to the grocery story, then come back and throw stuff in the dryer, then go upstairs and put the groceries away…now I took my laundry down and sat there. Certain types of bass sounds made me hysterical — I mean I would start crying and couldn’t stop. I’d know there was nothing to cry about, but those noises would set me off and I couldn’t stop. This meant that riding busses, being in a restaurant, sitting in the back of a car, being in a mall were incredibly painful. When visiting family (I come from a large extended mainly Irish Catholic family) I’d have to leave whatever room I was in and find some quiet place to sit. I had vertigo when I looked at a rear view mirror or side view mirror. I couldn’t remember the steps when I made the attempt to try a dance class — let alone do a turn. About the only thing I could keep doing from my “arts side” was sing — luckily my own voice didn’t reverb in my ears. However — in those first six months the funny thing was I wasn’t too worried about any of this. I was observing it, but lacked the capacity to be concerned.
I’ll go into this in more depth below, but one of the other strange things going on was my craving for very fatty, high cholesterol foods. When I was upset with something, I’d be craving a cream cheese and peanut butter sandwich. When I was getting overwhelmed in the city, I’d go for an egg salad sandwich (on rye) with provolone cheese. I noticed that eating these types of foods would calm me down. A friend who was a doctor said that it made sense to her, because the endings of the nerves in the brain are coated with a cholesterol-like substance. This was in the days before the about the “grain brain” and before I heard about the Zone. Whether it was the food or lack of dancing or both, I started to put on weight. I’d never had a weight problem before.
At about the six month point I began to be aware of just how impaired I’d become. I was trying to get back to the “day job” — and I found that I couldn’t work more than 4 hours at most in a shift — and if I worked two days in a row, I couldn’t remember how to do simple word processing steps that I knew how to do the day before. So I couldn’t work two days in a row. If I tried to use a copy machine I’d start to cry from the noise that it made. I needed a quiet place to work. Wasserstein Perella, by then Dresdner Kleinwort Wasserstein, was wonderful at accommodating me. I was extremely lucky in that regard.
I had moved rather often in NYC — for various reasons — and I was ready to move again. Prior to the head injury I could pack up all my stuff in about 10 hours — then move in 2-3 hours — then unpack in 10 hours. I started to pack up my current apartment and found that I couldn’t pack for more than 2 hours at time. I simply had to sit down and stare at the walls for a while. When I finally moved into my new apartment, I started to unpack and was looking at this wonderful large closet — and I stopped because I just couldn’t figure out how to organize my stuff to fit into the closet. This scared me because organizing things had always been a strength of mine. In fact when I was in fifth grade I used to organize my teacher’s supply closet for her, she was hopeless at it. At this time I contacted a neurologist at Mt. Sinai in NYC to have myself tested to see if I could find out what was going on.
Since I couldn’t work long shifts or more than one day at a time, the doctor stretched out my testing over a couple of days. I tested well in some areas, but very poorly in others, particularly auditory memory. If he said a series of numbers I could remember up to about 6 numbers. When he gave me 7 numbers I spaced on all of them. The same with a story, if it went on for too long, the entire story disappeared from my memory. I remembered differences in shapes (98%) but human faces were very poor. It was the first time I heard the words “Traumatic Brain Injury (TBI).” He told me I had a Mild Traumatic Brain Injury (“MTBI”). He also told me that it was people who were very high performing before their injuries that tended to suffer the most, because they could remember the differences from before and after. He also suggested drawing a picture of my closet to help me figure out what went where. That worked.
I am nothing if not persistent. I was using every possible option to help myself get my life back. I found that bodywork was very important. I used a couple of different types: Chiropractic (restored my peripheral vision, among other things); Osteopathic Manipulations (got rid of vertigo from front and rearview mirrors while driving, and restored my flexibility); and Cranial Sacral work. The Cranial Sacral work was particularly wonderful for short-term moodiness. I would notice that on overcast, gray days my mood would plummet. I was lucky enough to have a wonderful friend who was both a Rolfer and a DO. She’d squeeze me in for a 30 minute Cranial Sacral session and my bad mood would disappear. I believe in my laywoman’s terms that the atmospheric pressure affected the plates on my skull and caused the mood swings. But my experience was that cranial sacral work was wonderful. I still see a DO for cranial sacral work from time to time because my head and neck tend to get locked up over time (from using the computer, etc.).
Noise: Auditory Integration Training
Another huge symptom that created all sorts of problems was my sensitivity to noise. As I was sitting in my Ostoepath’s waiting room one afternoon I was talking to the mother of a child on the autism spectrum. When I mentioned the noise sensitivity she told me about Auditory Integration Training (“AIT”). She said that her son had been extremely sensitive to certain noises as well. After he went through the AIT treatment she was still responding to the noises when he no longer was. I immediately went online to find out more. There are practitioners all over the country and I found one in Brooklyn. However, that would have meant a 40 minute train ride each way and I was sure that sitting on the subway for 40 minutes would undo whatever good had been done. I found one that was near where my sister lived in California and I arranged to go see her. First the practitioner did a hearing test and I was amazed to find out that I heard certain sounds as buzzes, not tones. She also explained to me that my hysterics in response to certain noises was a physiological response — the noise/vibration hit the wrong part of my brain. AIT consists of 20 20 minutes sessions over 10 days (2 sessions per day, separated by at least 20 minutes). The technique involves sitting with earphones on and listening to random types of music with random volume level changes. It desensitized the brain by changing frequencies before the physiological response can set in. So if I heard a loud base noise and my whole body would start to flinch, the music changed and I could relax again. Since my body got used to relaxing after hearing the loud bass noises, gradually my system calmed down and I could listen to all types of noises without pain. Over the course of the 10 days the volume was increased, so the random noises were getting louder, the goal in my case to get as loud as a noisy truck or bus.
It’s strange to say that a miracle can occur in a McDonald’s — however, that’s where I experienced the miracle of AIT. I walked into a McDonald’s on about day 3 of my training for a snack between sessions. As I walked in, I simply heard children playing. It was not torturous or tense, it was actually a pleasure to hear them enjoying themselves in the play area. It was the first time since my head injury that I could walk into a noisy restaurant environment and not have to leave as quickly as possible. I don’t think I’ll ever forget that feeling. When I left California, I could still be irritated by extreme bass motor noises (the back of an airplane on a long trip for example) — but I could sit in restaurants, enjoy family gatherings, go to shopping in large shopping areas — and I no longer needed to work in a room all by myself.
I won’t go into detail here about what else was happening during this time, fighting with the disability company, getting tested all over again, trying to work two days in a row and failing miserably. But I had reached what was probably my maximum level of recovery. I could work four hours every other day. I could not work two days in a row. If I had three or four days off — I felt like my old self again. I continued to work on my voice now and then — but it wasn’t truly my gift and it was a struggle.
However, it was in working on my voice that I found neurofeedback. I had an audition with a vocal coach, and she felt we could work together after hearing my audition piece. I told her about the head injury, and she said, “Oh, but you have to go work with Margaret Ayers.” This woman had been a vocal coach for Maxine Andrews who had had a stroke. Ms. Andrews had worked with Margaret Ayers and regained her abilities quickly. I of course went online to do some research and Margaret Ayers had four case studies on her site. I no longer remember the specifics of these cases, but I remember thinking, “If this can work for them, I know it will work for me.” I spent the next couple of months setting up my trip to California to work with Margaret Ayers. (Lucky for me, I have relatives everywhere. My Aunt and Uncle graciously let me stay in their home during this time). I went to California for 3 weeks and every day that Margaret had office hours, I was there. I basically did two sessions on those days, about 20 minutes each.
In those days neurofeedback was simple. You saw your brain waves roll across the screen, ID’d what you needed to change — and the brain would do its work. Margaret hooked an electrode up to the right side of my head, and pointed out the big spiking brain waves that were running across the screen. She said that I needed to bring those spikes down. They were the sign of a serious brain injury. And that once I brought them down, the changes would be permanent. It was the first time my brain and I could see the problem. Margaret worked with Theta waves, and I worked on bringing down those theta wave spikes. My aunt, who had been concerned that I was getting involved in quackery, could see a difference in my after my first two sessions. I was more alert, a little more focused. Margaret’s office was an amazing place. She had at least four treatment areas, including the front desk. She’d put her ADD folks at the front desk as they progressed in their skills, so they could train in the midst of distraction. She said she’d had luck with dyslexics as well, a local client had fired the person who was writing for her. People there with their parents reported that their aphasia was gone. One couple came in with their 18 year old son, wheeled him in an extended wheel chair. They were from someplace like Oklahoma and Margaret was working with them for a few weeks until they could go back home and work with a local person. Over the course of a few weeks I could hear the boy begin to try to talk. She’d give a child who did well either $1.00 or a small toy if they had done well. It was a place of miracles.
When I went back to work I was able to start expanding my shifts — working more than 4 hours a shift, although not two days in a row. It took about a year and a-half before I found out that there was someone local who did neurofeedback. At that time the web wasn’t what it was, and there were competing softwares, and no central area to search for practitioners. In my search to find the CPT code for neurofeedback I contacted some folks in the San Francisco area who told me, much to my surprise, that there were neurofeedback practitioners in NYC. I called the person they referred me to who gave me the name of the person I’d work with for the next couple of years: Dr. Merlyn Hurd. One of the first things Dr. Hurd did was do a complete brain scan, a QEEG. This gave me pictures of what was happening inside my brain for the first time — and when I saw a picture of my brain reading — and saw the black hole on the right side of my head, I felt like crying. But not for the reason you might think — it was because I finally had something I could point to in order to validate and/or show other people what was wrong. One of the many frustrations of a brain injury is that one is inarticulate about what exactly is wrong, and sometimes people just think you’re a nut case, or lazy, or a whiner. When in reality, there is an issue that can be seen. And even better — fixed!
Dr. Hurd also explained that I had a preponderance of Delta waves in my waking state. Delta waves are the brain waves that usually involve deep sleep. I needed to reduce the delta waves. In addition, when my eyes were closed, what one would expect is that the alpha waves would increase. This wasn’t happening for me. The third thing, which she fixed very quickly, was that I had some over active Beta brain waves. This meant that I was over thinking some things. I had noticed, but couldn’t do much more than notice, that after my head injury I needed to attach a time to everything I needed to get done during the day: At 1PM I’ll do this, at 2PM I’ll do that, etc. I didn’t have to honor those times, but I had to set them. Also, if I needed to divide a number for some reason (sharing a lunch tab, setting a treatment number) — it had to be precisely even. A few cents one way or the other would cause me to be quite emotional.
When we retrained my beta waves, I walked out into Greenwich Village and simply enjoyed my walk — for the first time in years, with no nagging voice telling me what I needed to do next. When we finally uptrained the alpha waves, I saw a movie that week, and had that wonderful feeling one gets from seeing a good movie — and I realized that I hadn’t had that feeling since the head injury either. This is another challenge of a brain injury, and my heart bleeds for the head injured, or stroke victims or children on the autism spectrum — it’s incredibly difficult to know what isn’t happening. You know that something isn’t right, but you can’t articulate what the problem is. Neurofeedback’s gift, in my opinion, is that place of allowing a person to see what’s happening in his or her own brain. The practitioner or technician are the facilitators, and your brain does the work itself.
By now I had finally gained 70 pounds from my pre-injury weight. During the middle of my neurofeedback sessions, I heard about the Zone diet from two different sources, so I decided to try it. In NYC at that time there was a company that delivered meals that were in the Zone and I had enough room on my credit card to try it for two months. I only needed one month on this diet to figure out that it was really great for me, I felt wonderful on the diet, and I could lose weight. I proceeded to start to drop a couple of pounds a week until I got close to my preinjury weight again. I don’t know if the neurofeedback facilitated the weight loss or not –but it did facilitate the ability to calculate the Zone methodology (read more about the Zone here). I really got into measuring my food and figuring out what I had a “cravings gone wild” reaction to — and what foods just let me feeling full. As I stated earlier, this was well before The Grain Brain book that came out recently — that would have certainly helped me back then.
It took more than a few sessions for me to restore my brain. And as you can see, I did more than just neurofeedback on the way. However, neurofeedback was the most profound. We trained the delta waves down, then Dr. Hurd helped the right and left sides of my brain get in sync and cohere better. Ultimately we arranged with my disability company to pay for me to have a home unit, where I did my sessions at home and Dr. Hurd supervised. During this period I increased my shifts to 8 hours — and then was able to try working two days in a row, then three days, then full-time. People were telling me that they were noticing more awareness behind my eyes; and my supervisor at work noted that I was no longer hanging out in the back of the room by myself. Finally, I could tell the disability people I no longer needed them, what a wonderful feeling that was! I decided to move to California and get back into organization behavior work. My timing to move couldn’t have been worse, but I’ve been happy here in California since 2001. It has long been a dream of mine to train other people with neurofeedback. I’m happy to meet or talk with you, make an appointment with you or refer you to someone if you’d prefer. Feel free to give me a call or email me at info @ mindpath.com (remove the spaces).
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