Leading the Life I’m Told I Led

I have always had a very strange relationship with the Americans with Disabilities Act. I grew up what appeared to be completely healthy. I played, went to school, watched TV and lived a relatively normal life. Periodically issues would arise. I was acting up in class, not paying attention, saying and or doing weird things, (or so I was told). I thought it was strange, but at first I worked around it. 

Some teachers loved me, one literally hated me, and several others were simply confused by me. On several occasions, I was told I had said or done something that had me scratching my head thinking they were crazy or simply cruel. Several times I was accused of taking actions that I honestly had no memory of doing. 

After several of these occurred, my mother took me to multiple doctors and psychiatrists and we ran through the whole circuit of diagnostics including multiple Electroencephalographic (EEG) exams and computerized axial tomography (CAT) scans & all of them came back normal. So for several years, I learned to simply ride with whatever crazy story line should happened each day, and I grew to consider these quirks of life “my normal”. 

By high school, I had formed habits that helped accommodate my unavoidable absentmindedness. I took massive amounts of notes, kept datebooks and journals with the names of people I met, activities I wanted to remember doing, photographed whenever possible and kept those to this day. After three attempts, I finally scored an acceptable score on the SATs. (Twice I made it halfway through and suddenly 2 hours had passed). I figured that was also simply mindlessness and just worked to study harder.

I ultimately got in to one of my top three choices, and the next thing I knew, I was off at college, in a dormitory on a city campus starting the next stage of life as an adult. Less than one month into undergrad, I was walking back from dinner in the campus cafeteria (I believe it was dinner, but it may have been lunch also). In a camel colored coat, jeans and clogs, when the world instantly changed.

The testament of multiple people (some of whom became lifelong friends that day), was that I had a grand mal seizure. I don’t know who kept my skull from hitting cement and I don’t know who called 911. I think I remember the ambulance; and the rest of that week became very vague.  I was referred to National Institute of Health (NIH) shortly thereafter. I was a bit skeptical; (having been through similar scenarios and multiple tests in the past from various medical experts). So, I expected similar results would likely be the case this time as well. They placed me in a long coffin-shaped tube they called a Magnetic Resonance Imaging scanner. 

The resulting images were a rainbow of every imaginable color throughout the brain. It was fascinating to look at. Then I began to realize that two significantly large areas were white and matte. I looked right at my neurologist and technician and pointed to the image stating, “Let me guess, here and here?” Thinking to myself; “Are they malignant and how long do I have to live?!) They quickly replied, “No. They’re already dead.” That made me both relieved and incredibly confused, but I began to absorb the information. 

The neurologist had a great time looking at the imaging, he and his neuro-diagnostic technologist both trying to understand how I was able to speak, form memories, knew my own name, etc. (all of which were normally located in the portions of the brain that were now dead). I had no answer for this, but my doctor then went to grilling me assiduously stating; “Look, there is no way on earth this was your first seizure.” I replied, “What IS a seizure? “ We went round and round for about an hour, when he finally said, “Explain parts of your life that don’t make sense.  Situations that there are gaps, missing chapters, confusion…” All of the earlier experiences came to mind, but my first thought was actually, “How do I get my mom out of here before I tell him about these?” My mom (then and now) was much more astute and way too determined to hear everything, so I started talking. It was simultaneously the most vindicating and troubling moment I can remember.  The diagnosis became Epilepsy, the cause Traumatic Brain Injury and I went back to school and went on with my life. 

The seizures worsened over the next several years and after working five internships and 3 jobs while in undergrad to be prepared to go into the workforce, I was unprepared for how unlikely I was to be hired after having a seizure, and how a pre-existing condition could be an amazing barrier to getting a salaried full-time job.

A typical daily scenario can be summed up in one episode at DuPont Circle Metro in 1992. I was waiting for the subway and was standing with several others around me; then I was instantly standing in the metro kiosk speaking with the MTA manager. I asked, “Hello. I’m all the way back now, can we start over?” He looked back at me like I was an idiot or psychotic saying, “We’ve been talking...” I interrupted him saying, “I figure around 15 minutes or so. Yes, I understand that. That is about how long it takes short and long term memory to reconnect, so yes. I am back now. Let me know what happened.” He yells, “Woman, you fell on the tracks and we had to go get you off of them!” I was standing, so I paused and looked down and began checking my limbs and yes, I was quite bruised in multiple places. The only thing I could think to ask was, “They’re not electrified all the time? How am I not dead?” The MTA manager was livid at that point, retorting, “No they are NOT electrified all the time and you should not be out in public. It’s too dangerous.” I had been through this scenario multiple times now, so I simply replied, “Sir, I am safer in public than somewhere that I can fall down a flight of stairs where no one can help. I must confess that it is also never the same experience for me. I am at the closing credits of the movie and I know the lead actress lived. It’s not the same movie for me. Fill me in on what I missed.” 

I went on to get a master’s degree and took active steps to do everything I could to begin a career. I spent the next decade working as a graphic designer and desktop publisher for the full spectrum of nonprofits, corporations, government agencies, associations, theatres, hospitals, newspapers...you name it and I probably worked for it. My reviews were overall positive and frankly, if it were not for the time sheets I kept for the past two decades, I am unlikely to be able to tell you much about all of them. Some stand out and some professional friends are still in my life from various companies. My husband and I even met during one of the assignments, and married almost 10 years later.

I won’t deny that I was remarkably lucky in many ways. I came across multiple people who under other circumstances might have been predatory or criminal. The only hypothesis I have been able to support over the years, is when I was experiencing a post seizure state I did not react like a victim typically did, so perpetrators chose not to commit criminal acts against me. I met hundreds of people over several years every time I returned to the current moment. People included all types from gigantic physically intimidating men to people speaking multiple languages that I did not recognize, even a scared looking first grader holding a Chihuahua. The alternatives were to continue or not; so throughout it ultimately became easier to simply be. So I dusted myself off repeatedly and moved onward and forward while trying to improve myself and adapting to an ever-changing world. 

I worked in the DC area for around six years, then the Baltimore area for around four. I lived on my own a good portion of that time, and other than the bruises and the occasional scrapes, I fared relatively well. In Baltimore, I got to know two EMT teams who I saw more and more frequently—one from University of Maryland, another from Mercy Hospital. They almost always arrived right as I was coming back to full consciousness and I would quickly ask them for the form I needed to sign each time they arrived stating that “It is not your fault if I die after you leave;” so they would go away.  Every time a major seizure happened, my current contract (more often than not) mysteriously vanished. So I went on to the next company,  the next project and worked it one until the next episode where the EMTs arrived again and the cycle continued for several years.

In 1998, neurologists at Johns Hopkins determined that my seizures were continuing to worsen  and the best course of action was for them to to do frontal lobe surgery to remove as much of the dead tissue as possible.  So I took their advice and went under the knife.

While all of 1997 is basically gone, I was conscious during the surgery and vividly remember the conversations with the surgeon and neurologist asking me constant questions like, “What’s your name?” “What’s 5 x 5?” “What’s your mom’s name?” “Where do you live?” etc.  This continued several times throughout the surgery. 

When I awoke post-op, my first reaction was that I missed my hair (they chopped it off entirely). As it grew to just under a half inch long, my mom convinced me to have it dyed a reddish magenta color (which looked remarkably like Sinead O'Connor in her 1990 video, "Nothing Compares 2 U"). 

It was still an extensive process to get the seizures under control, but thanks to a lot of hard work, and some very good doctors, the seizures have been medically controlled for almost 22 years now. I was ultimately able to get through a job interview without having a seizure and have been able to help others who have not reached that stage yet while moving into a rewarding career. While I was able to drive after the seizures became controlled in 2003, I still take precautions and live in generally urban areas where if I suddenly have a seizure and can no longer drive, I have access to mass transit and can get myself around (as I did for much of my adult life).  

When the Americans with Disabilities Act became law, I had just graduated with my Bachelor’s, and was rather alarmed at how much blow-back there already appeared to be at the time. It was possibly due to the extremely tight market in the early 90s where upper management became middle; middle became entry and recent grads were pretty much out of luck. I was employable at a decent hourly rate due to graphic software and basic programming knowledge I possessed at that point in my life (before it became more common) and was both fortunate enough and unfortunate enough to be the invisibly disabled. While due to safety precautions, I let clients and coworkers know about potential seizures, this generally caused both cynicism and concern. Until someone saw a seizure, it wasn’t real. Once they saw one, generally they were less than they feared and I went back to work. It rarely had me removed, but did generally prevent the offer of a permanent job due to fear of high health insurance benefit costs due to preexisting conditions.

I admit that I was young and despite my experiences was rather naïve at that point professionally.  At first, I honestly thought that the public perception of disabilities in general and in specific cases would slowly but surely improve as more and more people began to contribute to society. Instead, employers ultimately seemed to get lost in two rather inconsistent messages: 1) Disabilities must be accommodated; 2) Hiring disabled people requires employers to do things that are not required to do if they don’t hire disabled people. Technically they were right about both. So if they could prevent a potential problem, it was better to only hire temporarily to prevent potential accommodations being necessary.  While my accommodations were rather minimal (i.e. if I was to lose my balance, I needed to be set in a chair and told in around 20 minutes or so what had happened); those accommodations could appear significant in the eyes of an HR professional or a corporate attorney.

As we reach the 35th anniversary, the same concerns are still rather daunting when I look at blow-back from so many Americans regarding the Affordable Care Act in 2010. I am surprised that so many do not value the protection that comes from being able to purchase health insurance despite a preexisting condition and without the requirement of your employer doing it for you. Many Americans, young and old, in varying degrees of health, all disregard entirely the freedom that results from your health insurance not being directly linked to your current job. It is the most freeing thing in the world knowing that I am not depending on one employer for the ability to go to a doctor or to be prescribed my anti-seizure medications. The ultimate irony is that, unlike some conditions that are primarily genetic, TBI can happen to anyone, anywhere. When you couple that with the significant percentage of Veterans returning with various levels of TBI; it is a bit terrifying that so many Americans take their health completely for granted and cavalierly assume that it would be better to eliminate requiring health insurance than for Americans to be able to buy health insurance with preexisting conditions; preventing millions who need medical assistance to control seizures and to provide many other Americans with the ability to get and maintain gainful employment. Personally, I will never take for granted the gift of each day that I am able to work and to help others to do the same.  I am well aware that (due to the very nature of TBI and epilepsy), my situation could change in an instant.  I’ll take on that challenge when it comes, but for now, I am enjoying the time I have.