Epilepsy Talk

In Tribute to Charlie Petersen | August 9, 2015

Charlie Peterson was a man who suffered from epilepsy for decades. He had one unsuccessful brain surgery, then another, which was successful, ten years later. He lived to be 58 years old.

During that time, he rose to be an active advocate and to give back by helping all those in need.

He was my friend and a friend to the world. Starting a support group where there was none. Counseling others with epilepsy and those who had a loved one with epilepsy.

He was generous to a fault, giving back in turn for the “miracle” that had saved his life.

He was patient, kind, generous and giving. He was my #1 hero.

And will be forever. In death, just as in life. Thank you Charlie, for all your goodness.

Here is the published letter he wrote to the editor of his local newspaper in New York…

Story of Hope

“Everyone knows that February 14 is Valentine’s day, but how many know that St. Valentine is the patron saint of epilepsy?

A lot of people have no clue – but, more importantly, many people don’t know much about epilepsy either.

Did you know epilepsy affects more than three million Americans of all ages? Almost 500 new cases of epilepsy are diagnosed every day in the United States, and the mortality rate among people with epilepsy is two to three times higher than the general public.

Last month, during national Epilepsy Month, I approached and wrote to several local newspapers, as well as regional newspapers and television stations. I wanted to bring epilepsy awareness to this end of Long Island that, in some ways, is still living in the dark ages.

Epilepsy is still considered a hush-hush disease by some, a stigma that nobody talks about. And if somebody sees a seizure, they panic. Yet first aid is so simple. And you could save a person’s life.

1. Turn the person on his side. so he doesn’t choke.

2. Put something soft under his head.

3. Clear the area of both people and objects.

4. Do not put anything in his mouth.

5. And if the seizure lasts for more than three minutes, call 911.

When I spoke with some of the editors, and representatives of our local newspapers about an epilepsy awareness article, I was told, “We’ll look into this,” and they dismissed me.

One editor had a close family member with epilepsy, and one paper even assigned a writer to my story, but the writer put me off until “after the holidays.”

When I spoke with that writer on February 4, I was told she’d have to talk with her editors again.

More nonsense. This is the blind eye people with epilepsy deal with on a daily basis!

My story is one of hope – a story of a man who has lived with seizures for 50 years. I thank God I was enlightened with an alternative to dealing with multiple daily seizures daily in spite of multiple medications.

In October, 2009, I went through two eight-hour surgeries at NYU Langone Medical Center, and I’m seizure free.

Although this isn’t an answer to every seizure disorder, my doctor wondered why no one had ever told me about this possibility.

Some doctors aren’t even sure what to do with patients with epilepsy. Most of my previous neurologists just kept adding more medicine to my treatment.

With more education, awareness and funding, maybe some one won’t have to live for 50 years before they hear about the many advances made in epilepsy treatments.

If this letter helps just one person with epilepsy, it will be worth the months of indecision and silence of our media…”

Charles Petersen, East Quogue, NY


15 Comments »

  1. He put up a good fight, and didn,t let his epilepsy, or let his prombles stop him. We need more people like that,and less feeling sorry for our selfs becomes we have seizures. people need to fight,not think it,s the end of the world.

    Like

    Comment by michele metzger — August 10, 2015 @ 12:52 PM

  2. Did he die? When and from what?

    Like

    Comment by Zolt — August 10, 2015 @ 2:41 PM

  3. Yes, he died on Sunday around noon. He had pancreatic cancer which then spread to his liver and stomach — and you know the rest…

    A huge loss and advocate for us all, who leaves a giant hole in my heart.

    Like

    Comment by Phylis Feiner Johnson — August 10, 2015 @ 2:46 PM

  4. Hi Phylis, sorry to hear about that, how old was he? Was it a hard passing? My dad was given 6 month after they diagnosed him with spinal cancer and 6 months later he died from it. It was a horrible experience, the suffering in the end was very bad. I think for terminal cases, assisted suicide should be allowed.

    Cheers,
    Zolt

    Like

    Comment by Zolt — August 11, 2015 @ 1:49 PM

    • I agree with you Zolt, but Charlie was a very religious man and wouldn’t have wanted to take that route.

      Like

      Comment by Phylis Feiner Johnson — August 11, 2015 @ 4:27 PM

  5. So sorry for the loss of this great man…I lived on Long Island for 50 years….he was right, I never thought much about Epilepsy, didn’t even really “know” what it was UNTIL I was diagnosed with it……and just recently a neighbor, who does not know I have epilepsy said that she was sick of a past neighbor “waking her up at all hours of the night because she had epilepsy and had ‘crazy’ fits and ambulances had to come” (she proceeded to imitate ‘a fit’) Needless to say I “schooled” her on epilepsy and informed her I have it…….she squirmed away….unfortunately many people do not know what epilepsy really is.

    Like

    Comment by Barbara B. — August 11, 2015 @ 4:10 PM

    • Barbara, interestingly enough, Charlie started his own Epilepsy Support Group at one of the hospitals near East Quogue, after The Epilepsy Foundation pulled out of the area, claiming there weren’t enough people there! 😦

      What a treasure he was.

      Like

      Comment by Phylis Feiner Johnson — August 11, 2015 @ 4:31 PM

  6. I wondered for awhile why we had not seen any posts from Charlie for quite some time. But, the old training from childhood about not being “nosy” prevented my asking about him.

    Now I know how much I did not know about him – not his age, or his cancer, or even where he really lived other than somewhere in NY state. Hopefully, it was because he was just private. Fortunately, though, for all of us with epilepsy, he was not private, silent, or embarrassed about his epilepsy.

    Rest in peace, Charlie.

    Like

    Comment by Laura McGaffey — August 11, 2015 @ 5:56 PM

    • Oh Laura, you couldn’t have said it better.

      And I was the only one who was nosy and asked the hard questions — in person or on the phone.

      (I guess that’s part of my nature. To do the tough stuff. And to BE tough.)

      He was the eternal optimist. Although I can assure you, that because of his beliefs — he’s definitely resting in peace.

      Time for another tissue. (Sigh.)

      His Memorial is the weekend of the 21st and it’s gonna be a tough one for me.

      But, per his daughters’ wishes, the Memorial will be followed by a barbeque/party to honor Charlie’s life.

      How perfect.

      Like

      Comment by Phylis Feiner Johnson — August 11, 2015 @ 7:26 PM

  7. I’m a regular at the support group Charlie started. He helped many people by starting it. Those of us with epilepsy, and friends and relatives of people with epilepsy.

    Charlie was one of the nicest people I’ve ever known. He will be missed.

    Like

    Comment by John — August 13, 2015 @ 10:32 PM

  8. I was so excited when he started the support group.

    He was quite a guy. I really miss him deeply.

    Like

    Comment by Phylis Feiner Johnson — August 14, 2015 @ 8:36 AM

  9. stunned. hard to believe i’m reading this. phylis i am so, so sorry. and thank you so much for hooking charlie and i up a couple years ago. he was good to talk to not only patient to patient but also as two people starting support groups and trying to figure out how to do it best. i just reread all our emails and wow he was so full of life. it was always so engaging one of us being from new york and the other from a small city in bc, canada.
    at only 58, how awful. hugs and rest in peace charlie. will be thinking of you on friday.

    Like

    Comment by Nat. — August 16, 2015 @ 7:43 PM

  10. Tears again. And I thought I had stopped crying.

    It’s interesting how all of us had support groups — and supported each other.

    I’ll be in East Quogue this weekend. First for the wake on Friday.

    Then Saturday is the memorial service, followed by a big barbecue to celebrate his life.

    After which, Charlie’s family is going to board a fishing boat (fishing was his life) and spread his ashes out to sea. (Also the thing he loved most.)

    It’ll be a tough weekend emotionally. I can’t even say his name now, without crying. (Sigh.)

    Like

    Comment by Phylis Feiner Johnson — August 17, 2015 @ 8:38 AM

    • I was looking up anxiety seizures because I have anxiety to, so I took the test and scored 50. My panic attcks level moderate and a little high, is any of the people in this group like that to. Michele metzger

      Like

      Comment by michele metzger — August 17, 2015 @ 8:14 PM

  11. I haven’t taken any tests, but you can rate me high anxiety. VERY high.

    I wish I could follow all of my own advice, but I do accomplish deep breathing and visualization.

    At least that’s something.

    Like

    Comment by Phylis Feiner Johnson — August 18, 2015 @ 9:45 AM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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