Saturday, June 2, 2018

Have You Ever...?

       It occurred to me the other day that when I haven't had a convulsion for a long-ish period of time, I begin to get nervous. I become hyper-aware, and every little thing seems to feel like a warning that a massive event is on the way. I would love to feel free of epilepsy, but I never really do.
       I suppose part of my anxiety is linked with the fact that I do have an aura before an event. This means (at least to me) that any little sound, smell or visual oddity is a signal to be careful where I go, what I do and with whom I do it.
       And each time the sequence of events repeats, it makes me feel as though the pattern is set. Epilepsy really cannot be avoided. Convulsions can't be evaded. Seizures of all sorts and kinds can't be talked away or reasoned with. There is no amount of willing or determining that can be done by any one of us that can keep it away or make it stop once it has you. And, for me, there is an almost claustrophobic feeling that I cannot outrun or escape it's onset. Of course, this is how it feels when I am only ruminating on it. We all know that when E. does happen to visit, no  one really has the time or luxury to contemplate how it feels.
         So this is why I say I am epileptic because contrary to the positive thinking of many folks, I do not deny that my epilepsy has me, and that it has since I was 3 years old. I know it has informed and even formed some of my thinking and development as a human being. But, how do you think of it???

Friday, March 30, 2018

Fillicide: Murder or "Mercy"

Related image
         The name of the institution where disabled Japanese were murdered by Satoshi Uematsu
         with a knife is shown in this image. 
SUDEP is the unexpected death by epilepsy. We are coming to terms with this reality as epileptics. An aspect of having epilepsy is guilt and fear.

The guilt of causing a disturbance to the flow of everyday living and the fear that the people around us will simply give up on us. That their support for us and for our lives will evaporate one day. In the United States, it has been estimated that about once a week, a disabled person is murdered by someone close to them.

“Filicide” is the legal term for a parent murdering their child. In the disability community, “filicide” is used when talking about a parent or other relative murdering a child or adult relative with a disability. The murders of people with disabilities covered in the media, often show empathy for the murderer instead of the victim.

Approximately once a week, a person with a disability is murdered by a family member or caregiver. When these murders are covered in the news, they are often called “mercy killings”. This perpetuates the stigma and myth that the life of a person with a disability is not worth living and that it is a kind deed to end such a life.

When parents do kill disabled folks, adults or children, the media almost always presents one of two narratives: the harried-but-saintly parent or caregiver who couldn’t bear the terrible burden and (understandably) snapped one day, or the saintly parent/caregiver who killed out of the tenderest of mercies.

The Rudman Foundation offers a profile of filicide, with a link to the white paper it came from:

*At least 219 disabled people were killed by parents and caregivers between 2011-2015—an average of approximately a murder a week. This is a very conservative number due to under-reporting and the fact that a victim’s disability is not always made public. The real numbers are likely much higher.

*The killers routinely claim “hardship” as a justification for their acts. The media rarely questions such claims or asks for comment from disability rights organizations, and especially not from people with disabilities themselves.

*In the drive to explain a killing, the lives of the victims get erased resulting in killer-centered, rather than victim-centered reporting.

*Spreading the hardship narrative may lead to more violence, rather than changing policy around supports. In many cases, the narrative is fundamentally not true.

*Many killers receive little to no prison time. In such cases, perceptions of disability as suffering inform judicial decisions not to punish filicide

While this little post is not necessarily specific to those of us with epilepsy, we are a part of the numbers of disabled in this group. There is a National Day of Mourning dedicated to these victims of filicide; the date is March 1, each year.

Saturday, March 17, 2018

St. Patrick & Epilepsy...

MEDICAL MATTERS:  if you suffer from epileptic seizures, St Patrick’s your only man, writes MUIRIS HOUSTON
THE INTERNATIONAL image of St Patrick’s Day is more about leprechauns, green beer and cabbage and corn beef than early Irish Christianity. And while the myths associated with St Patrick do not have a particularly medical flavour, in general saints have been linked with diseases and cures through the centuries.
St Patrick has been mentioned as someone to pray to if you have epilepsy.
Tradition has it that a person with epilepsy who slept on “leaba Pharaic” on Caher Island off the Mayo coast could be cured. 

Wednesday, February 28, 2018

The Way Back...

      If there is a clue to epilepsy, then it has to be in our collective past. That is what this blog has entertained since I began writing it. Our collective past makes our present and even our futures possible. We have to do more than offer our experiences in daily living to others. We have to offer some kind of historical perspective, a social perspective, concerning epilepsy.
For me, this is a root component to learning to understand and to live with this condition.
      Take for example the photo above. At the turn of the past century, the medical knowledge at the time suggested that persons with epilepsy needed to be hospitalized for the protection of the family and the patient.  Care was limited, in our contemporary sense of the word, to labor and fresh air.
            Separate accommodations for the "feeble minded and epileptics" often meant various treatments, including segregation, bromides and starvation. It was felt at the time that starving some epileptics resulted in a marked reduction in seizure activity, while bromides created a calming effect.
Hospitalization, then, was  complicated. Years later, sterilization for both men and women was considered necessary so that epilepsy could not be passed on in families.
     It was under these conditions that doctors became aware of the possibility of death from epilepsy. In close contact with epileptic patients, doctors observed that some of their charges died from the effects of seizing. Today, doctors brush aside the notion that one can die from epilepsy. Yet, it was common knowledge at the end of the 19th century and into the earlier part of the 20th century.
      Today, the notion that epilepsy is one of the most common neurological conditions prompts many doctors to deny the thought that one can die from epilepsy and not to pass the information along to their patients or their families. Sometimes, they simply don't know the range of complications related to epilepsy, sometimes it is a consequence of bad medical school training, sometimes it is a neglected issue because neurologists don't want to alarm families or patients. Whatever the case, the knowledge is frequently withheld.
      The experience of living after a family member or friend has died from this condition is terrible. Finding out that doctors knew that this is a possibility and have simply not passed it along is both frustrating and maddening. Activism against this reality has been somewhat effective. Today this possibility is termed SUDEP or sudden unexpected death from epilepsy.
      While this is not a posting to make us depressed or grim, it is important to be aware of the possibility and to know that there are folks working to restore this knowledge and import. Doctors must be pressured into telling the whole truth to patients and families. They are not in the position to withhold this kind of relevant information. That is a kind of medical paternalism. It should not and must not be tolerated.
      Medical activism should be practiced by those of us who share this condition. We must be proactive with our care. Arming ourselves is the best step we can take to inform and  protect ourselves and the people we love.
   Part of my effort with my blog is to encourage each of us to stand up for ourselves. Self identification is one of those ways. Confrontation with our healthcare providers is another way.
      Learning about our history and then making an application of it can be a useful tool and yet another way of pushing back, for our own benefit and for those not yet diagnosed.  

The Bell

   Therapists tell us that one of man's preeminent fears is being buried alive. The term for fear of being buried alive is  Taphophobia ...