Chief Justice Roberts

[POSITIVEPERSON]

I am so pssssst off , with him, why can't he just admit he has epilepsy and move on.

BY denying it he makes it like he is a second class citizen. The man takes anti-epileptic drugs whats his problem???????

I have epilepsy and I am lawyer and a JUdge . So what???

Attitude is everything!!!!!!!!!!!

Riva

[Bernard]

Chief Justice John Roberts suffered a seizure Monday, causing him to fall while at his summer home off the coast of Maine, the Supreme Court said.

Chief Justice John Roberts was taken to a hospital in Maine after a fall at his summer home.

Roberts has "fully recovered from the incident," and a neurological evaluation "revealed no cause for concern," the Supreme Court said in a statement.

Doctors called the incident a "benign idiopathic seizure," similar to one suffered by the chief justice in 1993, the court statement said. An idiopathic seizure is one with no identifiable physiological cause.

Chief justice tumbles after seizure

You'll likely have to read about it in his memoirs.

[Bernard]

I am so pssssst off , with him, why can't he just admit he has epilepsy and move on.

BY denying it he makes it like he is a second class citizen. The man takes anti-epileptic drugs whats his problem???????

I guess that's why he's a judge and not a leader in the Executive branch!

[brain]

RIVA:

HE MAY BE JUST LIKE WHAT I AM

I am a person who have degrees and of reputation.

Fact: I was ashamed of it, was embarrassed.
I did not understand what was happening to me, being
confused, disorientated, in a fog, dazed, having no
memory, and above all - extremely scared. I would be
hurt, bleeding, would have stitches or bandaged up,
in a sling or half cast, would feel like a whole gang of
people beat me up with baseball bats, but there was
no one there.
I knew I wasn't crazy, I just wanted to be normal,
just like everyone else - but my parents and Doctors
would tell me I would never be normal.

Why: I grew up with it (very rural), never knew
anyone who had it, and I thought it was so rare,
and all these years, still have YET to meet a person
who as Epilepsy!

What: I spent years burying it under the carpet.
I was teased, bullied, beat-up, made sport of, and
even an open-show of by adults when I was a child.
And as I grew older, I had to learn to defend myself,
but I disliked violence; violence was not the answer.

How: I hated it so much, I wanted to prove every
Medical Doctors wrong. I even persuaded the State
Vocational Rehabilitation Administrator and Counselor
to let me prove myself, but it resulted failure after
failure. Even when they gave up, we (ex-husband
and I) had our own businesses; it provoked migraines
or seizures or even worse - migralepsy.

When: I realized, in late 1990s, it was a loosing battle
and sweeping it under the carpet wasn't going to
benefit nor profit anything. I was going to have to
confront this and deal with this face to face and
learn about it, even though I was terrified and
scared of it. But I didn't know how. I tried to come
out before, but my (ex)husband wouldn't permit me.
The hardest thing was for me was to admit I had
it. I had Epilepsy, I'd rather say I'm Deaf, than
to say it, because people would look at you funny,
I know - I went through it all when I had all these
ambulatory EEG's, EEG's, on the medications.

Where: I spent most of my time at home, alone,
at nights. I cannot see very well at nights, and
besides, back then, there were too many stuff
going on that would provoke migraines, seizures,
or both, and would end up in the Hospital.

Experience: Was horrible, In sync one day
out of sync the next, On so many various medications
some which made me so "loopy", others which made
me "sleep non-stop", and a few which sent me into a
state of "psychosis". A couple of medications actually
made me have more seizures (worse), where it was
inane! But the list goes on and on.

It was embarrassment and shame. Sufficient was it
enough that I had neurological issues and being deaf,
and I left it like that.

--------------------------------------------------

I decided to come "OUT OF THE SHADOWS" but I
was not welcomed warmly. I wanted to learn and meet
people. I decided to heed my Oral Surgeon's advisories
and get "up-to-date" with these newer medications.
And I didn't realize that there were so many new
terminologies, changes, progress. All my Neurologists
I had were divided among themselves, and were not
of much benefit at all. They never told me what to
expect, or offer any support, or advisories.

I lurked at EFA's website for a long time before I
ever had the gutso to even register and post, as I
was scared to, because Epilepsy isn't all I have.

[POSITIVEPERSON]

Wow my life experience was so different. MY childhood dr (to this day I believe was the best dr I ever saw) convinced me and my family "epilepsy was not excuse" and I was to live my life to the fullest. Plus I wasn't the only person in my neighborhood with epilepsy. And I use to go a epilepsy group as a teenager in NYC.

MY father lost 3 of fingers at work before I was born and he set an example in our home. He always told this story, how he had a choice of being on diability or going back to work. He chose to go back to work. He was a huge influence in my life, espically after I was diagnosed with epilepsy.

I never felt I was any different than anyone else because of the epilepsy. I tried to live my life to the fullest. I never hid the epilepsy either. My teenage friends and boyfriends always made sure I never had a drink and it was just fine.

Unfortunatly one of my friends who had epilepsy died when she was 19 or 20 yrs old . Her boyfriend and all her friends were devasted . (she should rest in peace) Her parents never allowed anyone to come to her funeral .We all mourned her, we think she died from a brain tumour. She is remembered to this day with love .

I guess what we are taught and how we learn to cope epilepsy , losing ones fingers, deafness makes us who we are . I went on to cooking school and had a catering business until I couldn't work anymore.

Now that I am controled with homeopathy ,when the adjustments are over I will restart my life and see where that takes me?

Riva

[Bernard]

Looks like this Justice Roberts story is getting quite a bit of play in the media. It's probably doing more for epilepsy awareness than most planned efforts over the last few years.

[POSITIVEPERSON]

Should be interesting where and how his story plays out


Riva

[Wally]

I'm watching it closely!

[Stacy]

I have run the spectrum as to how people treat me. My family growing up was supportive about my Epilepsy, though not always tolerant.

After the babies were born and I went to see an old Chinese lady that has a hospital named after her in China, but is not an MD here. She said she could cure my Epilepsy, but it would take some time. She asked that I stop taking all medicines and stop driving for a while. If it would get rid of my problem, ok. So, for as long as we could afford it, Bernie would drive me into town and this lady would pinch the livin' daylights out of me, and then tell me to "...deep breathe. 2 minutes." My seizures got worse and we ended up stopping the treatment, as there was no money left.

After the seizures started happening in sets (13 in 24hours), and I wound up in the hospital a couple of times, I was not even allowed to walk up and down the stars by myself. I wasn't allowed to hold my own children unless I was sitting. I'm a pretty stubborn person and if I felt up to it, I did it anyway. I cannot count the number of times Bern and I went at it about my driving. Legally, I still had my license. However, I didn't think I should drive in the AM when I was prone to seizures. But now it's a bit different... I know when I'm prone and I do not drive during those times. I am very safety conscious toward myself as well as the rest of the world. Anyway I felt like I would never be the good mother I had hoped, because I was treated differently... like a person with a severe handicap... moreso, a totally helpless moron, who cannot be trusted to be alone.

It's much better now that I have it more under control. I have figured 99% of the problem out. Let's see if I can get the other 1%.

[Bernard]

Rather than taking Roberts's seizure as an opportunity to educate people about an already misunderstood disease through explaining seizures and epilepsy, the media chose to turn the news into "sensational entertainment."

During the minute-to-minute coverage on CNN and Fox News, the reporters questioned Roberts's ability to continue. Should Roberts step down? Does Roberts have a "sound mind?" Will medication (if he needs it) affect Roberts's judgment?

Even online blogs question Roberts's ability to continue, and insinuate he cannot function because of his seizure.

I do not agree with Roberts much, but I do admire his achievements. According to http://www.whitehouse.gov, he graduated at the top of his class from Harvard; was managing editor of the Harvard Law Review; was an appellate lawyer for several years; and by the age of 50, he became Chief Justice of the Supreme Court of the United States.

The fact that someone of such intellect had two seizures should cause a push toward eliminating the stigma surrounding epilepsy.

Instead, the media and the Internet have only perpetuated this social stigma, making a profit from seizures by keeping them obscure.

Media's mad speculation distorts facts on epilepsy

[Bernard]

I found an old blog post on the WSJ addressing the Chief Justice Roberts' latest seizure. The last Q&A section just rubs me the wrong way for several reasons:

Q: What would treatment comprise?
A: Treatment could be any of several anti-seizure medications. Many of the drugs are relatively benign and have little or nothing in the way of cognitive side effects. But at the margin, when there’s a particular premium on cognitive functioning, that’s one of the things that we think about. It’s important to keep in mind that patients go on and live normal lives in spite of an event like this. In some ways it’s a chronic illness like asthma or diabetes. It shouldn’t result in a major modification of career or lifestyle in this situation.

Health Blog Q&A: Epilepsy and the Chief Justice

First off, why is the very first treatment consideration a drug? Two seizures in 14 years and you want to pump him with drugs? I'd say his seizure threshold is pretty high. He'd probably never have another seizure if he adopted one of the "seizure control diets" or (IMO) used EEG neurofeedback.

Second, while I agree with the last point he makes, I think he severely misrepresented the potential cognitive side effects of anti-epileptic drugs.

[Stacy]

I think the guy is VERY intelligent (I don't always agree with his decisions), and should be helped considerately, not considerably (ie, by medications).

I had a similar situation when I had the executorship of my grandfather's estate thrust upon me. I was very stressed out, and started having seizures. I had many relatives calling our lawyer to see about having me removed, and asking if I was capable enough to complete the job. OOOoo that made me mad!

[Paula Apodaca]

Bernard suggested I include my response to Newsday in
the discussion of Chief justice roberts here. I was flattered, and I do hope it hits some of the high spots and concerns we share in common about this issue:

Dear Newsday,

The Breslin column is all the talk among persons with epilepsy at the Epilepsy Foundation's forum "Living Well with Epilepsy". Some participants would like to talk with Breslin to let him know his age is showing: that medical and pharmacy sciences have developed more and better anti-epileptic drugs since his day. Others want to throttle him and the editor who let his column pass before publication: mentioning Alzheimers and E. in the same sentence is bad form!

The Chief Justice, however, hasn't been forgotten in all this talk: he has been identified as a prominent Epileptic Self-Loather, and while the community is frustrated because he has failed to use his bully pulpit to engage a conversation on E. (epilepsy), he is acting out as many of us do when faced with a crisis of disclosure: he has clammed up and has allowed others to obfuscate on his behalf. Perhaps he should telephone Tony Coelho for some tips on how best to handle acknowledgement of his epilepsy. Coelho's E. was never his real problem...

Read my blog for more information on the social history of E.
Thanks.

Cordially,
Paula Apodaca
E. is for Epilepsy by Paula Apodaca
http://www.epilepsy-paula.blogspot.com/

[Paula Apodaca]

Greetings, Everyone...
My stance on the outing of Chief Justice Roberts is that it has happened---he did nothing wrong, did not cause it. But, since it has happened, and since it has caused a good deal of interest from news sources and the general public, as well as our own E. communities, he should stand up squarely, look everyone in the eye and say he has E. (or he does not have E.). Disclosure can really count for something, especially when you realize that it helps more than just yourself. Risk the truth, tell the tale, and then, in his case, relax and remember, you've got the job for life...no one will take away your judgeship!

Each of us suffers and grapples with the questions surrounding disclosure...it isn't new to a single person with E. The historical elements that have made it especially difficult for us have taken over 3,000 to assemble themselves, so it would be silly to think it
could be a battle won in a single day---but, it could be won in a lifetime.

[brain]

Well it is a fact that a person
could have experienced at least
one or two seizure(s) in their lifetime
and not have epilepsy.

It is only documented so far that I
had read from so many papers from
all over, that he's only experienced
2 or 3 in his lifetime, and it could have
all been due to stress, being sleep
deprived, too much caffeine, et cetera.

I have not heard any further updates
or any further words. If there were indeed
Epilepsy, he would have stated so. But
having Epilepsy would have no impact
on his position or his job as a Judge as
he is appointed for life, unless he has
come to a point where he is mentally
incompetent to handle the job.

Just my humble opinion.

[Bernard]

Hi Paula, welcome to the forum.

Thanks for (re-)posting your note. Please let us know if you get any response from Newsday.

[gel61820]

Hi Everyone and welcome to the forum, Paula!

I also was lucky like Riva (PositivePerson) and had for my first neurologist a doctor who was very positive and let me know that this medical condition did not have to change how I lived my life. He told me that how I handled my epilepsy was the key, for it would help others to see that I was no different. But if I chose to deny it and didn't take care of myself, no one would be hurt but me. (Please do not think I believe that this is the case for all people with epilepsy, as there are varying degrees and different types, but how we take care of ourselves and the epilepsy is fundamentally the key in our success in living with this condition IMO.)

I was met with opposition though because I was not allowed to tell my grandparents the truth because of a past family history with an uncle's wife who refused to take her medication and was always in and out of institutions in the 50's and 60's. This was hard for me, especially as a child since I was diagnosed at age 11, because I could not see why I had to hide this part of my life. It showed me how stigma towards epileptics were so off the mark, as each person is an individual and how they handle their health is truly the key. Even though I was a straight A student and active in many ways, this did hold me back in some areas, such as refusing to take drivers education classes because I revolted against their requirements for epileptics since someone with diabetes was not required to meet similar requirements and also by not telling my employers due to not knowing if it would influence my being hired or how I was treated on the jobsite. But even during this time when I was a "closet" epileptic as I attended a support group for epileptics and their loved ones to learn more about the condition and how to deal with it.

Eventually though, due to someone having a seizure at the office and co-workers starting to "help" in the worse ways, I basically took over without regard for my job since I didn't want this person injured by their "help". Afterwards I went to my boss, and after a very stern dressing down, I informed him that I was an epileptic and that I could not allow them to injure the person and I wanted to "come out" by giving my co-workers training on how to help someone who has a seizure. It was probably the most positive move I ever made in dealing with my epilepsy because from that day forward I have been totally open about it, even when I knew it would backfire.

Epilepsy, like many medical conditions, is unique for each individual. There is no "cookie cutter" regarding how we respond to the seizures, the treatments or the stigma that unfortunately does still exist. I believe that Judge Roberts should be open but I also understand that it may take him time to come to that realization. It is interesting to me that there are people who will question Judge Robert's intellect based on epilepsy, for it shows their lack of knowledge about this condition. He did not get to this position in his career based on NOT having a medical condition, he got there based on his knowledge and intelligence. (I will admit as Stacy did though, that I do not always agree with his decision.)

I think we need to give him time to come to the acceptance of this change in his life without being judgemental about the fact that he may not yet have been able to embrace his medical condition and therefore make it public. As with any disease we have during our lifetime, we have to accept it and embrace it as part of ourselves, or we are not fully accepting ourselves as we truly are. This is what I instruct in my profession (mental health) for if people do not accept their current condition, how can they truly accept themselves and move forward? Hence I have learned to be very tolerant. Many people can take years to accept their own conditions in mental health, and I would say from individuals with epilepsy I have met over the years, that is also true for many of them due to lack of knowledge, fears of the unknown and general misunderstandings regarding how to live with this medical condition.

Well, that is my , although now that I look back, it looks more like a few dollars worth!!!

[Paula Apodaca]

It does take some time to get up the nerve to "come out" as a person who has epilepsy... I do not mean to be anything but encouraging. Some of the things I write on my blog, for example, are in some sense directed at persons who are ready, but need just one more piece of "heart" to give them the impetus. At sometime, it is my
hope that each of us will take that step, and damn the consequences.

Since coming out, I know four people who claim E.---of course, three of the four began with the "I used to have E. when I was a child, but it's gone now" bit---and then, for one, it came back, all of the sudden, with no warning. She now tells me she is a person with E.

The other person who claims E. is an administrator at my university, director of the disabled services unit. She has let a couple of hr co-workers know, because she has seized in the office before. But, she doesn't want others to know. She is terrified by that vision. Still, she is overjoyed that I tell everyone I have E.

Roberts' situation provides us limited knowledge: he may have been seizing all of his life, off and on. I am certain many of us know pwe's who go without seizing for long periods of time and then, BOOM, one hits you out of the blue. It's happened to me!

I will let you all know if I get any reaction from Newsday...

[Paula Apodaca]

Thanks, Bernard, for inviting me in!

I just checked my original posting at eCommunities (Epilepsy Foundation's site) and though lots of folks read my post, only about 7 of them responded: with the "why should he tell anybody" stuff. One person actually suggested that I was writing all of what I wrote because Roberts is a Bush apointee... Hmmm.

My own politics are my own business. The only thing I believe in is a secret ballot, and 1 person, 1 vote! This is the one thing I do not have to share with anyone.

But there is something in this discussion left to address: the importance of a public person taking the opportunity to speak about E. You know, E. isn't like cancer, Alzheimer's, stroke, HIV/AIDS. Those problems
people are willing to talk about in the open. In each case, however, there was a time when this simply wasn't true. People feared admitting they had cancer. They feared losing their job, friends, housing, etc., if they revealed it. The stigma of cancer was terrible to behold---and then, things began to change. President Nixon instituted a war against cancer, people began to mention it on the television, radio and in print ads. Folks began to admit to having it and today we think of cancer as a routine part of life.

Getting over the stigma of HIV/AIDS was quicker than it was for cancer. From the time it was first recognized till present day has only been about 30 years. We talk about AIDS, we fear it, sure, but it is out in the open.

Having lived my life alone with E., knowing no one with this same ailment, feeling ostracized from even my own family, I want things to change for all of us. I have made myself an advocate for this end. I hope to see it happen for us.

So, to tell me it is OK for a public figure to side-step the issue altogether, to hint around about it, to say nothing, stinks to me. I don't want the guy to have it, I just want the guy to realize how significant it could be to our society if he would say "Yes, I have epilepsy" or "No, I do not have epilepsy" and let us all off the hook

Noblesse oblige: the obligation of the nobility to act for the ignoble. I guess I still feel that those with greater visibility should use that visibility to help those of us that no one will ever see or know.

Does any of this make sense? Or is it time for my nap now...

[Bernard]

Well, we're glad to have you here Paula.

I can understand politicians needing to keep issues like this hush hush if they are facing re-election. It's politics after all, but Chief Justices don't need to be re-elected or re-appointed. The guy has his job for as long as he is capable of working.