Okay, so there is a bit of snark in that subject line.
I have two disabilities. One is epilepsy, and the other is Dupuytren's Disease. (The two are thought by researchers to be related.)
I was in the Navy when I was diagnosed with epilepsy in 1995, an aviation electronics technician first class in a helicopter squadron. Although I do not remember either incident, I apparently suffered a seizure on my sofa at home, and a couple weeks later fell off a helicopter from another one whilst servicing it.
That ended a seventeen year career in the Navy. It also got me declared "unemployable" by the Veterans Administration (meaning it seized my retraining benefits, though my wife can use them).
It played a large part in my divorce from my first wife (but I will not go into that here).
More on the problems of both disorders below the quivering orange line.
KosAbility is a Sunday 7pm eastkost/4pm leftkost volunteer diarist series, as a community for people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent conditions, from small, gnawing problems to major, life-threatening health/medical ones. Our use of "love someone" extends to cherished members of other species.
Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. Our only rule is to be kind; trolls will be spayed or neutered. If you are interested in contributing a diary, contact series coordinator postmodernista.
|
I wrote a KosMail to Postmodernista asking to join KosAbility, and was graciously accepted. (I could not respond immediately because I was locked out of my mail for a week for some reason.)
There are things about epilepsy that many folk do not know: for example, in all states, if one has well-controlled seizures (meaning none), it is perfectly legal to drive; indeed, some insurance companies give discounts to those with epilepsy (since such people are more likely to quit driving when they are tired and such, thus resulting in fewer accidents).
Don't stick things in a person's mouth suffering a seizure (contrary to popular belief, you cannot swallow your tongue, but you can bite off someone's fingers trying to stick something in your mouth).
If you know someone has epilepsy (either personally or through means like a Medic Alert tag), then simply remove things from the area that the person might injure himself on. Do not call an ambulance unless it is the first time, seizures continue for an extended time (over five minutes), a new set comes after another, or you are truly unsure (the person is unknown to you and he has no identification indicating epilepsy). Insurance will not pay for an unnecessary ride in an ambulance to the emergency room for a person with epilepsy: I have had the pleasure of a couple of those bills.
After the seizure has passed, the person will likely be disoriented, tired, and possibly will have soiled clothing. Check for possible injuries after the seizure has passed, reassure the person, and offer aid as necessary until he is back to normal.
Specifically, I suffer from left temporal lobe epilepsy (one of the most common forms: the name simply indicates where seizures arise). It causes me to have tonic-clonic (formerly known as grand mal), myoclonic (meaning everything relaxes instantaneously and you drop to the floor, then the seizure is over), and absence (formerly known as petit mal) seizures (or blank stares), when uncontrolled with medications.
Approximately 2% of Americans suffer from epilepsy. (That would be roughly 6.4 million people.) We look like everyone else, therefore it is hard to tell by looking at us that we suffer a disability.
Worse, many people do not know what to do if they come across a person suffering a seizure. (I will write about that at another time if anyone here is interested.)
More after the letter I wrote to Postmodernista:
----- -----
Though I am relatively new here, I have read with interest past diaries in the KosAbility group. I am interested in joining the group (and if you are interested, perhaps I can drop a diary on my own disability and some of the troubles it has caused me, left temporal lobe epilepsy).
There is great misunderstanding about epilepsy, particularly amongst those who does not know someone with it.
For example, right after I moved here, the village board (city council) was in the process of renovating an old school building for use as a village hall and replacement public library. The board was very concerned about compliance with the Americans with Disabilities Act, but as far as it understood that Act, that meant wide doors and wheelchair ramps.
Since the building was still in the planning stages, I noted that there were issues the board needed to take concerning epilepsy at my second meeting. (Ensure bookcases were bolted to the floor or wall to prevent knockover, cover sharp corners and edges, &c).
The village board was resistant to the idea of spending "excess" money on such things, noting "no one in town has epilepsy." I then outed myself.
Even after the board was made aware of the problem (which would have been worst in the new library with free-standing bookcases and such) it did not want to spend the money on a new plan to renovate the building with such things as epilepsy in mind.
It was quite a fight at meeting after meeting, with only my wife to support the fight. Eventually the county attorney was called in, who quietly informed the board that it really had no choice in the matter.
The epilogue of the story is now I am an elected member of the village board, and my wife is the library director (meaning the old plan for the library was instantly scrapped in favour of a new one).
I wouldn't exactly call such problems "microaggressions," more like frustrations. Outwardly I look like everyone else (except for my long hair and fedora). Other folk in town simply did not "see" disability, because I am not missing a leg or something.
This sort of thing has been going on every since epilepsy caused me to be bounced out of the US Navy after seventeen years service.
(The details of my service can be found in my on-line shadowbox at Navy Together We Served. Hovering your cursor over each badge, medal, or patch will give a description of that item. (There is also a link to the memorial shadowbox of my father, who was killed in the Vietnam War when I was seven.)
----- -----
There are many medications for the disorder, but one in particular is in the news a lot lately: Phenobarbital, a barbiturate. Phenobarbital is generally the last-resort medication in First World countries, due to its addictiveness, age (in the USA it falls under the FDA's list of grandfathered drugs not tested for safety and efficacy - though its efficacy and safety are known), and ease to divert to the illegal drug market. (It is also very cheap.)
I take Phenobarbital for seizures, after the Navy ran me through every other drug on the market. They were either without effect, or I was allergic to them.
WHO considers it a first-line drug for all Third World countries (as it is easy to store in a wide range of temperatures and humidity). It and Secobarbital [reds] are also the only drugs that will immediately reverse a condition known as status epilepticus (uncontrolled continuous seizures that can result in death if left untreated — that condition can arise from epilepsy, comas, meningitis, head injuries, or other conditions).
Phenobarbital can exacerbate a condition in those who have a genetic predisposition to it called Dupuytren's Contractures (claw hand, goes to WebMD with overview and photos).
That disorder, thought to be related to epilepsy, causes "bands" to grow across the tendons in the palms of the hands, curling up the fingers so they cannot be extended. In extreme cases it also attacks the feet (called Lederhosen Disease). Regrettably I have both. Lederhosen Disease can make a person unable to walk, though I do not have trouble with it except long times standing in place. (The genetic diseases are primarily restricted to those of northern and eastern European descent.)
Until very recently there has been no correction for Dupuytren's except surgery (I have had four, two on each hand). The surgery was developed by one Baron Dupuytren in Poland in the XVIII Century, hence the name.
There is a particularly gruesome YouTube video of a Dupuytren's surgery if you are inclined to watch such things, here. (4 m 36 s)
That disorder normally strikes genetically-predisposed women in their seventies and men in their eighties. It struck me when I was forty-five. Since no other drug works to control my seizures, I am stuck with either seizures or hand problems.
(Dupuytren's Disease could be the subject of another diary by itself: another village trustee here also suffers from the disorder and has had two hand surgeries.)
Phenobarbital has entered the news because of some states turning to that drug to replace drugs they can no longer get for the death penalty. The difference in dosage between seizure control and a lethal dose is very small.
Because of diversion of Phenobarbital to the death penalty, its manufacturer was threatened by the European Union to cut off sales to the United States or be subject to sanctions, due to the European Union's Convention on Human Rights.
One of the early unsung victories of President Obama's first term was hammering out an agreement with the EU that it should not cut off sales of Phenobarbital and Secobarbital, due to their need in treatment for epilepsy.
He was unable to convince the EU to continue selling sodium thiopental (also known as truth serum) and Pentobarbital however, as they are the first choice drugs for the death penalty — and the principal choices to immediately stop status epilepticus. Phenobarbital and Secobarbital are used to induce a barbiturate coma until the seizures subside, not as good a choice.
Lundbeck (the drug company, based in Denmark), agreed to continue selling Phenobarbital and Secobarbital, but now requires anyone getting a prescription for those in a death penalty state to sign a form indicating the person will not transfer it to the state government (on pain of lawsuit: I have signed such a form at my local pharmacy).
In a case that garnered attention in the United Kingdom (detailed at the BBC here), a drug firm there cut off sales of the medication to the State of Arkansas Department of Corrections, because of diversion of the drug to death row. A charity there called out the issue, and the firm cut them off. It remains to be seen whether prisoners with epilepsy in the custody of the Arkansas prison system will be able to obtain the necessary drug.
Another case in 2011 saw the Drug Enforcement Agency seize the state Department of Corrections in Georgia's entire supply of sodium thiopental, illegally imported through a front company in the back of a UK driving school, then distributed to other death penalty states (as reported in the Atlanta Journal-Constitution here).
Most epilepsy drugs are controlled substances, and many could theoretically be used for the death penalty (another axe of mine to grind sometime), which puts those of us with the disorder at odds with both recalcitrant state governments that illegally run drugs, and the DEA which tries to stop it. It can also cause police harassment carrying such drugs (even in a proper prescription bottle). [The last has not happened to me.]
Well, I have gone on far longer than I should have in a simple introduction, so I will leave off here.