[bct] Re: Hello everyone

  • From: "Jake Joehl" <jajoehl@xxxxxxxxxxx>
  • To: <blindcooltech@xxxxxxxxxxxxx>
  • Date: Wed, 30 Nov 2005 22:18:03 -0600

Hi Maria. That's very lucky. I've never had a seizure and I doubt I ever will, 
because the meds I am on seem to be working well. They have not been changed 
for quite some time.
  ----- Original Message ----- 
  From: Maria 
  To: blindcooltech@xxxxxxxxxxxxx 
  Sent: Wednesday, 30 November, 2005 10:13 PM
  Subject: [bct] Re: Hello everyone

  Hello Hope,

  My goodness; what an experience.  That must have been awful.  
  I hope that someday soon there will be a medical break-through to help 
seizure sufferers.
  Though I am, and have been seizure-free for some time now, at one time I was 
plagued with them.  The thing is, none of my doctors could tell me their exact 
origin.  Finally, a neurologist told me that he felt they stemmed from the 
meningitis which cause my loss of vision.  I had cerebral meningitis as a baby 
and was in a coma for a couple of days.  
  In any case, my seizures would come upon me whenever I was overly stressed or 
had too much tension in my life.  My doctors did place me on medication, but my 
body reacted unfavorably to it and I subsequently had to learn to pay attention 
to my body's needs by  pacing myself and not allowing too much stress to build 
  I don't want to bore anyone with  my entire seizure history, but I'll just 
mention my most harrowing experience which happened when I had a seizure while 
in a canoe.  I was lucky in that my canoe partner was the camp nurse and knew 
what to do.  



  Original Message----- 
    From: Hope 
    To: blindcooltech@xxxxxxxxxxxxx 
    Sent: Wednesday, November 30, 2005 5:25 PM
    Subject: [bct] Re: Hello everyone

    Actually, to answer your first question, my seizures are random, and there 
are no symptoms or cues to let me know that one is about to happen.  This is 
frustrating, and it is also scary.  One incident, in particular, comes to mind. 
 I was in choir in high school all four years.  Each year, the choir and 
orchestra would put on a concert for the general public to come and see  It was 
always very cool for me, because the orchestra would accompany the choir 
sometimes, instead of just your traditional piano accompaniment.  One of the 
pieces I remember the most is the Hallelujah Chorus.  The choir stood on risers 
on the stage and the orchestra was in the orchestra pit.  I, being a soprano, 
was on the top most riser.  I loved standing there because it was always so 
exhilarating to be that high up, and to know that my voice, along with everyone 
else's would carry to all of those people listening.  Well, during the climax 
of the piece, as the music and voices were crescendoing, I fell off of the back 
of the riser and apparently fell into one of several  mics that had been set up 
for recording purposes.  Needless to say, that concert, as well as that piece 
have a particularly strong, if not painful memory for me.  The next thing I 
knew, I was in the hospital with a concussion, and no longer singing, 
"Hallelujah, ... and He shall reign for ever and ever ..."  I was singing, " 
... There shall be pain for ever and ever ..."  Of course, it healed, and 
luckily, nothing worse happened, but I do have a copy of the recording, up to 
that point.  After that, the rest of the concert was called off.  I felt really 
horrible about that, because we all had been working very hard all year to make 
it happen.  Everyone understood though, but it didn't change things. My senior 
year things went fine, although, taking no chances, my choir director insisted 
I stand on the bottom riser, so that if I did fall back, I would fall into 
someone else instead of down and crash into equipment and solid wood.

      ----- Original Message ----- 
      From: Mary Emerson 
      To: blindcooltech@xxxxxxxxxxxxx 
      Sent: Wednesday, November 30, 2005 3:48 PM
      Subject: [bct] Re: Hello everyone


      Those seizures sound like they're really scary. Do you know when one is 
about to happen, or is it just sudden and random? Jake, if your room mate has 
one, are you able to get help? 

      Concerned and wanting to know more, so I for one wouldn't mind if this 
discussion continues on this list. It's sort of like learning about diabetics; 
I had a college room mate who was diabetic, and my boss at the office was also. 
Between the two of them I got really interested in learning more about it. It's 
a shame people get stuck with these sorts of conditions; there is a lot of 
misunderstanding about them. I've known people who had epilepsy and they always 
had to deal with misunderstanding due to ignorance and fear. 



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