|
|
I am wondering how many others with epilepsy have been to college and had to deal with the limitations put on you by the college/university system.
I began college in 1976, and after 10 years, I made it through two bachelor's degrees programs quite successfully and several years of post-grad training in a medical school MD program. Up until my tenth year of college, my epilepsy was little more than "an inconvenience" due to its limited impact on my learning and test-taking performance. In 1985, when the seizures began to take their toll on my academic skills, I found it nearly impossible to obtain the support or help necessary due to the few numbers of people with seizures who were then in contact with student disability/handicapped student services. This included my inability to obtain any support or assitance from even special needs non-profit groups devoted to my type of problem, a major surprise for the time, but in retrospect now (20 years later), a simple consequence of the status quo--back then, people and agencies really didn't expect epileptics to be able to make it into medical school, for if they did, the financial aid and support services needed by these students would have already been in place.
Since my departure from medical school, I got through ten more years of seizure experience and underwent a surgery that was only in its early post-experimental phase at the time it was performed. (I am told I was easy to remember at the meetings because I was case #100.) Just before undergoing surgery, I applied for a university instructorship position to teach a course on pharmacology and plant chemistry that I wrote the outline for. Beginning 6 months post-op, I taught these undergrad pre-med student 3 and 4 credit programs for the next 17 years, which ranged from reviews of the obvious (medical chemistry, the evolution of herbal medicines and bioengineered products) to the more eccentric fields like the philosophy of herbal medicine, herbal cosmetics/aromatherapy and health, and the history of plant medicines on the Oregon Trail.
As a result of this phase of my life (and the necessary recovery from the surgery that followed), I was finally able to make it back to college 7 years post-op and get on with my career in the medical field. It took me three attempts to get admitted, due to the various barriers that exist in the college application process for someone with epilepsy, who underwent surgery, and now receives a social security check each month, except when he is teaching. Neither the social security office, nor the various education and non-education-targeted non-profit organizations (npos) were ready for my first attempt to return to college back in the winter of 1991/2, just two years after my operation. Expecting this to be the case I applied to the Yale and Harvard history of medicine MA/PhD programs, due to their more liberal application requirements. As I anticipated, this resulted in a legal dispute between myself and my former medical school following my request that a copy of my grades be sent to these institutions. With luck, I managed to receive pro buono assistance for my problem through a legal firm in New York City associated with the Clinton Administration about 18 months into this dispute, and so my legal case was settled and closed.
With the resulting legal repercussions of the first application process totally behind me in 1993, I tried again to get back into graduate school. By this time, I figured the passage of ADA would have made the school more ready for my application this time. Unfortunately, this time it was the the SSI policies and procedures that got in the way. Neither SSI or ADA activities had resulted in the changes in policy needed to allow me to return to college and get off SSI.
Like my first legal mess, getting rid of this SSI administrative problem required a little bit of luck and just the right assistance from the Clinton Administration both legally and administratively to return to graduate school. The first problem was that there is a law prohibiting people from re-activitating the student loan program if for any reason they are forced to resign from this program midway and then subsequently go into default (i.e. due to disability onset). The second problem was there were no prior cases like my own in which a person with a history of neurosurgery wanted to go back to graduate school; administrative policies were just being developed at that time to allow disabled people on SSI back into the academic setting, and the Plan For Achieving Self-Support (PASS) Program produced by the Social Security Administration was pretty a token offer that was very much inactive and non-existent.
My final admission to graduate school for Fall of 1996 came due to the right timing and a little bit of luck. I applied to a program without mentioning the epilepsy history, except to the US Department of Education staff managing my case and the university financial administrator already made aware of these ongoing communications by myself. Since there were still no new grants or scholarships out there for epileptics (except the rewritten scholarship I no longer qualified for), I did not apply for any financial assistance aside from the regular student loan program. My admission and student loan reactivation processes actually required a copy of my letters from the White House and the US Department of Education to be initiated.
Since then, my study topics for the two Masters degree have included sociology/medical geography, medical anthropology, environmental medicine, disease ecology and mapping, epidemiology, biostatistics, complementary-alternative medicine (CAM), and mindbody healing.
Recently, at a local EF peer counselor's training meeting, I met a person in undergraduate school with seizures; she rekindled my interest in how this medical condition is interpreted by academicians. She made me wonder: during the mid-1980s, the academic system was poorly educated on epilepsy, is this still the case? Have they improved much on the inside since I was an undergraduate student? Do they have any supportive services targeting specifically people with epilepsy? What if any improvements have been made in the financial support services out there for people with epilepsy?
Based on my years of experience trying to get back into graduate school following the total elimination of my epilepsy (1993-1996), I have learned that the following to me would be true indicators that the academic system is more understanding of the issues related to epilepsy and college education:
1. The development of a program designed to facilitate and assist people with epilepsy trying to make their way into the college or university setting.
2. The development of a reasonable grant program that supports people with epilepsy who have college-related needs to be meet in order to reach their career goals; this means they should receive more than the few, small college grants that we find are currently available to people with epilepsy (college costs $12,000-15,000+, per year, a $2500-5000 single grant/award is simply insufficient and lacks true meaning or substance for people with epilepsy trying to make it into college).
3. The development of a similar grant program for people with epilepsy trying to make it into graduate school. The cost for grad school is even more than undergrad, and the ability to make it into grad school with epilepsy can be a unique accomplishment for people with epilepsy. People who develop seizures when they are past the typical college years (and yet have some work experience and so try to get back into school or find a career more fitting of the seizure-life years) might need this even more, due to the forced work or career changes they have to endure due to epilepsy.
4. The development of more active, support programs for people with epilepsy who wish to enter a career school such as a medical school, law school, dental school, veterinary science school, nursing school, etc. The ideal program would again include some form of grant support program and the development of some more supportive non-profit organizations with the professional and financial services, utilities, staff and leaders experienced in assisting college students with epilepsy.
Quite recently, I completed two more degree programs as a graduate student (MS and MPH). I now find it extremely interesting to note that little change in the system has really occured since the early 1980s when I was a medical student. There are a number of complex factors at play in limiting the ability of this part of academia to change. The administrative components of this issue pertain mostly to how much money is available to produce these services and how that money is allocated--for the most part, most of the money families donate for the epilepsy cause go into administration and developing the programs that now exist to help individuals make their way into some sort of self-managed way of living and children and parents through the child's primary and secondary (pre-college) education years. Currently, very little money exists to assist the epileptic with enough ambition to make it into college, much less a graduate degree program.
Unlike students who experience different, more physical forms of disabilities, people with epilepsy have little more to assist them, aside from the token student assistance program or two which currently exist. People at college do not know the other students who have seizures, since they are not as visible as students who are blind or in wheelchairs or in need of a notetaker, and so do not have support programs or services readily available to them. The need for these programs is not fully known, and so they remain not fully met. And since Epilepsy, itself, is not really recognized fully as its own disability, due to its association with other types of medical conditions with disability-related support services already in place.
One of my degrees is related to education in public health, and I think that Epilepsy and College is a worthwhile human potential issue to begin discussions with. The human potential philosophy states that each individual has a potential that he or she is capable of reaching. One reaches that experience by enduring each of life's challenges as they present themselves, always making the best of what happens in the end. This way, problems due to seizures can themselves become learning experiences, in turn enabling victims to learn more about how to make it through to the next stage of life. More importantly, epilepsy often lacks the physical limitations that other medical problems present people with. For this reason, it is best to manage the seizure problem as if it were not there most of the time, making use of your time and excess cerebral energy to be more productive. This makes the epilepsy experience less a physical limitation placed on the body, and more a condition that can result in increased cognitive ability, mental and emotional endurance, positive change, and the human potential.
The other pages/blogs I produced provide more detail on each of these periods in my life. They focus on both my personal and professional experiences during the pre- mid-, and post-college years.
Add your comments
When i went to college at Eastern Oregon University, I was told about a department called the Learning Center, and they help people with Disabilities, and Epilepsy was one of them that they help out with. I actually have had to drop from school because of illnesses that couldnt be avoided and I missed so much school that I am lost and am not planning on going back. With Epilepsy I have lost alot of my ability to retain information, and I am hoping that I can get a job and put my Associates Degree to work.
I am curious about disability services at school. A friend of mine who is studying to be a disability counselor said I can register with them and they will send an email to my classmates and teacher at the biggining of the semester explaining I have epilepsy and what it is. I wouldn't normally want this but they have called the ambulance on me three times this month at school despite there being no need to, this mornings seizure being a short complex partial. I'm hoping that a bit of outside education will ease them since they get so freaked out. It's a bit odd but I'd rather that...
Although maybe only her school does it- it's a bigger school.
Your friend's ambulance corps experience is not unusual.
It is probably impossible to keep teachers and students from calling the ambulance corps when a seizure occurs. A lot of times staff people/teachers make the call in order to cover themselves legally. Students call because they are uncertain of what to do--and are sitting next to you, etc. And by the way, seizures are often misconstrued by college students and professors as a result of some sort of drug or alcohol experience, even if your problem is complex partial and all you are doing is mumbling or walking around. (In my case I left an organic chem test once, an advanced bio exam which I couldn't read for a while afterwards, and in the dorms, I even left my shower stall 2 or 3 times and wandered about the hallways and onto the wheelchair ramp.) When you are having a seizure, it's that look in the eyes or misbehavior that makes many uncertain about what state you are in, so be ready for any possible types of issues to arise after this type of thing happens.
As a college student with epilepsy, I worked as a crew chief and training officer for the campus ambulance corps for 6 years at a large state university (population 35k), and am quite familiar with premed student and student EMT attitudes and comments behind the scenes about people with seizures. If the ambulance corps is on campus, you have a bit more control over how the ambulance corps staff will deal with you, so long as you try to inform the officers of that crew about your situation. Just tell them that their arrival will most likely result in you signing a waiver, in most seizure cases, in order to allow you to go back to classes or to your studying (and they'll cover this in their training updates and such with their members afterwards). This doesn't mean you won't get an ambulance arriving . . . they'll arrive anyway, just in case, but hopefully know who to suspect and have their waiver form ready. Contrast this with the opposite scenario: if they keep getting calls about someone with seizures, from other teachers, staff or students, and are never really kept in the loop about the person's seizure history and typical medical needs, they wind up getting somewhat judgmental and critical about all the "false calls." (This behavior is kind of ironic I found, since many of my classmates and ambulance corps members I witnessed doing this were pre-meds and the like.)
If the ambulance corps is not a campus-run operation, it's a bit harder to have the ambulance corps crew members understand. But I still recommend you try to get in touch with them, and talk with a chief or officer there, but not be surprised if there are members who don't care what is recommended and will still try to follow what they think is the best protocol, according to their teachings and judgments regarding the management of seizure cases. For these types of crews, see if you can get from their corps one of those waivers to keep on hold (already signed even), in case they show up, and you are out of it, but alert enough to give them their signed waiver. (A doctor's signature on the same item saying he/she is okay with you doing this might be of help as well.) I know of a few people who kept a doctor's letter on hand instead. The tags around the neck or bracelet are fine, but sometimes just make matters worst, because this leads some EMTs to think the worst is happening (a status epilepticus emergency). [How many EMT's out there actually know the difference between complex partial seizures and partial complex seizures?. Typically, unless well informed, EMTs don't understand that being charged for an unneccessary ambulance transport for a problem as self-contained as most non-generalized seizure states is not the best patient-friendly outcome.]
As for the professors in college, try to find out which profs are more likely to be "understanding". and talk to them one-on-one during their office hours, preferably ahead of time. In highly competitive pre-med classes like Intro Chem, Organic Chem and Intro Bio, where attendance can be 1000+, I found them to be "less available to you" concerning this matter, so getting some assistance from the handicapped students services office helps--especially for testing and concerns regarding rights to laboratory access. Going to the TA is sometimes helpful, but again there is the personality issue you often have to contend with when it comes to TAs.
If there is a campus infirmary, talk with the staff there.
If the seizures tend to result in problems that impact test-taking or writing performance (i.e. post-ictal amnesia, post-nocturnal seizure side effects, aphasia-induced writer's block, and such), see if handicapped students services can provide some neuropsychology testing and assistance, especially if short term-long term memory loss and Wernicke's/Conduction aphasia end up interfering with test-taking/essay performance. Profs have a hard time understanding this (with the exception of biopsych/neuropsych majors, grads and staff), and whether or not they actually do depends on personal attitudes and beliefs--not necessarily what they may have been teaching in the classroom. So, involving disability services enables you to establish a baseline setting, should their assistance be needed in the future.
Excellent observations! I also put myself through college during that era when epilepsy was looked upon as a mere "inconvenience" rather than a true disability. I then went on for two Master's degrees and found, like you, that nothing else had changed later.
How can students who may be afraid to go to a grocery store because of losing their bodily fluids due to a neurological condition that is none of their fault proceed to a state of full independence and reach their full potential with the pitiful systems that are in place now?
One other area, though, is that further work needs to be done educating the academic staff as to what epilepsy is and what to do if a student has a grand mal seizure in thier classroom, especially with people's perceptions.
Trying to put what I have experience regarding my college experiences with epilepsy together . . . I think that educating academicians on seizures could certainly help them so long as they have an open mind about this.
Professors have to be taught two things: how to properly deal with grand mal/convulsions and not mistreat or misapply first aid to these people, and how to understand and acknowlege the limits seizures can have on learning and especially test-taking performance in the classroom. It is not the history of seizures that does you in as a student, it is the occasional recurring seizure that interferes with your ability to recall and messes up your performance on tests and during projects due in a very short period of time that does you in.
Traditionally, we grow up learning about petit mal and grand mal seizures, and learn little to nothing about psychomotor/temporal lobe/complex partial seizures (my problem) or myoclonics. Professors have the same experience. This means several classes (2 or 3) would have to be done to properly to cover this topic in the college setting for them. (I once did some classes on this in the department of psychology during the late 1970s/early 1980s, and recall it took two 1.5-hour sessions, and that didn't include any detailed first aid coverage.)
As an undergraduate student for 6 years, I believe I told two or three professors of my problem, but only because it interfered with my performance on something that was due. I once had a seizure during an organic chemistry test and could not take the exam for most of the hour due to dyslexia and dysecrive (which I believe is what you call it when you can't write). Several times I had conduction aphasia which got translated into my writing [This takes place when conduction between Wernicke's area (responsible for language form and expression) and Broca's area (responsible for motor movement when speaking) are disrupted, causing you to substitute words like orgasm for organism (pseudohomonyms) in your speech patterns, vocabulary skills and writing style] This experience really happened to me for a cell biology midterm, which I then had to explain to my professor after I get the essay quiz results back and re-read my answers!
During the 70s and 80s, it seemed like there is a 50:50 chance that professors would understand your dilemma when you have seizures that get in the way of your paper writing and test taking. They were more understanding of my dilemma 15 to 20 years later, when I went back for graduate schooling during the early 1990s.
Working as a mentor/advisor for students with epilepsy at the university, I still find there to be some issues that have to be dealt with. For undergraduates, I am still concerned that informing a professor of your seizure history could make them tell you you cannot engage in a required chemistry lab course or other risky project until the appropriate waivers are signed and the like. For undergraduates I know that seizures are often brought on by stress-induced activity, which for some requires they take the test in a different setting (according to ADA policies). For me, my seizure often occured the hour or day after taking a test; one time this led me to blindly walk out of the room after completing the test, without TA permission, between others still taking the test. And as an undergrad I learned that staying up too late to study for a test or quiz could do you in, as well as consuming the wrong things at a dorm party (to describe this problem nicely). Even worse, if you have seizures the night before a test, they can cause short term memory loss--not something a student likes to live with--this means that if you know your topic, rather than just memorize it, you can put it into long term memory enabling you to perform good on a test, even if you have a seizure some time prior to it. Finally, I suggest students keep a detailed diary of seizure events, in order to determine possible causes, and avoid or modify your activities accordingly; this way you prevent seizures from interfering with your midterms and final test/final paper results.
Who asks and what type of limitations are you under?
Who asks? (What do they ask?)
Do you mean, do people in the classroom or school ask you if you have epilepsy? Does your teacher? And if so, why would he/she ask and what would your answer be?
Do you mean, do people with epilepsy ask for sources of scholarships and grant support and such--yes, they do. Whereas there are numerous scholarship opportunities out there so long as you know how to find, apply and collect them, the opposite exists for grants. There are as many grants available to people with seizures who want to do to college and get a degree, or become an expert in a particular field, as there are fingers on one hand (well, perhaps two hands).
What types of limitations are you under while at school and living with seizures? I explained some of these to the previous reply by a college student. These limitations don't mean you need a lower scoring method to pass, they mean you accomplished more than the average student with the same score but who doesn't have seizures, medication issues and post-ictal responses to deal with.
It would be great to learn if there are college grants out there for epileptics that are more than just the token partial tuition coverage out there since my undergraduate years--a grant that provides you the opportunity to attend college in spite of epilepsy and be granted enough financial support to pay for a full year's tuition, for books and computer, etc., not just 1/10th of the total year long education cost like the current ones available. (Of course, there may be grants out there at specific insititutions, which I would love to hear about and pass on to my students and handicapped student assistance office.)
Did you know that when you type in "epilepsy" or "seizure" as part of a grant search engine, that most if not all of grants you see listed support the research of epilepsy and epileptics, rather than support the epileptics themselves? It is as if we are monkeys in a cage for anyone to study, even those who are just slightly interested in learning what we are about. This wouldnt' seem so bad were it not for the fact that if you try to contact other grant-providing sources that specialize in grants for students with a particular medical or "education limiting" history, these agencies all forward you to organizations which they feel better service this need for epileptics--places where this support doesn't exist to the extent that it should.
If you want to learn more about this, and find your own potential grant resources--check your local library for the Petersons Guide, or a book that describes grants for Individuals, or a computer database which lists and describes each grant/scholarship opportunity available to students and school/college applicants (even high school and pre-college students) based on their personal history and qualifications. In addition, each college or university has a grant search tool in their financial assistance office and at their libraries, which can automatically perform this search for you. Most if not all schools, have some an enrollment/financial aids office that tries to find out if and how you can pre-qualify for financial awards on their behalf, sometimes.
It might just be better for me to just open the second part of this question to others. (I already gave some real examples of this in response to the previous reply).
In regards to education and career choice, what kinds of limitations do epileptics face? And how does one get past these limitations?