Epilepsy Talk

A Neurologist Talks About His Own Epilepsy… | June 20, 2021

In this eye-opening article from the New York Times, a neurologist talks about his own journey with epilepsy: his perceptions, other people’s reactions (not good) and how he decided to become a neurologist.

A wonderful account of the doctor as patient and “must” reading for anyone who has epilepsy…

http://well.blogs.nytimes.com/2011/06/23/seeing-epilepsy-from-the-patients-point-of-view/?emc=eta1

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17 Comments »

  1. I would love to read this article and share it with my 19 year old son who still suffers from debilitating seizures, however there is something causing the link to close or directing me to subscribe to an online newspaper. Any chance you can try re-posting? “Neurologist talks about his own epilepsy”. Thanks!

    Liked by 1 person

    Comment by Christine Coyne — June 20, 2021 @ 12:44 PM

    • One day during medical school, my classmates and I learned that one of the most well-liked doctors-in-training in the hospital had had a seizure while leading morning work rounds.

      The sight of him writhing had caused the other doctors and nurses on the ward to panic. Some stood mute, frozen with fear. An intern, believing that the seizure arose from low blood sugar levels, took his half-eaten jelly doughnut and held it against the mouth of his seizing colleague. Others yelled to the ward secretary to “call a code,” and continued to do so even after another dozen doctors and nurses had already arrived on the floor.

      The young doctor eventually recovered. But for many of the medical students and doctors who heard about the episode or were on the wards that day, the dread of that morning would linger long beyond our years of training. Epilepsy was, and remains, a frightening and mysterious malady.

      For the last 20 years, Dr. Brien J. Smith has tried to change how doctors and patients view epilepsy. Earlier this year, Dr. Smith, chief of neurology at Spectrum Health in Michigan, became chairman of the Epilepsy Foundation. Being elected head of a national organization does not seem unusual for a doctor who is a well-recognized authority and advocate in his or her field. What is extraordinary is that Dr. Smith knows firsthand about the disease and what his patients experience: He learned he had epilepsy when he was in high school.

      “Every day I see how off-base health care workers are with seizures and epilepsy,” Dr. Smith said recently. “There’s a lot of stigma attached, a lot of stereotypes regarding cognitive abilities and how seizures should look.”

      I spoke to Dr. Smith and asked him about his advocacy work, his diagnosis and how being a patient has affected his interactions with patients and colleagues.
      Q.

      When were you diagnosed with epilepsy?
      A.

      My epilepsy probably started at a young age. I remember waking up as a young child with weird dreams — a kaleidoscope view of the world. In my midteens I had these feelings of kind of a brain warp that would pass. Finally as a junior in high school, I had a seizure getting out of the car in the high school parking lot.
      Q.

      How did you decide to become an epilepsy specialist in medical school?
      A.

      I liked surgery and I liked emergency medicine. But I realized I needed to find something that didn’t require procedural work or spur-of-the-moment cataclysmic decisions where the pressure is on and even if you have a little short-circuit, that could mean life or death to someone.

      I also was interested in neurology and figured it was my calling in life.
      Q.

      How did your epilepsy affect your interaction with colleagues?
      A.

      I never hid the diagnosis. But a few years later after my training, I was asked to write a foreword for a book that was a collection of personal accounts of seizures. That was not an easy decision. I worried that by being so transparent, people might see me as handicapped, that they might view me differently.

      The decision to write that foreword made me realize that I should be more of an advocate. I had noticed that among my colleagues, there were a lot of stereotypes of those with the disease, like “Oh, wow, look at that crazy person.” None of them were learning a lot about seizures in medical school and training, and they didn’t really understand how seizures could affect people.
      Q.

      What has happened with your epilepsy?
      A.

      I was seizure-free for many years but had a major seizure on my way to my first major epilepsy meeting in 1992. On an M.R.I. afterward, the neuroradiologists found a slow-growing brain tumor that probably caused the seizures all along but was never seen, or missed on early CAT scans.

      I ended up getting the left temporal lobe of my brain removed, which leaves people with difficulty naming things for the first six to 12 months until the brain figures out how to get around the problem.

      So there I was for a while, a neurologist who couldn’t name things.
      Q.

      How have your own experiences affected your interactions with colleagues?
      A.

      It’s really helped me see that doctors need to be taught to understand seizures. It’s a disorder with over 40 different types or syndromes that can affect anyone. There are Supreme Court justices who have had a couple of seizures and function normally. There are adults who have had significant head trauma, strokes or brain tumors. And there are individuals for whom epilepsy is catastrophic — children who all of a sudden find themselves going down a path where there is a strong likelihood they will never have a normal life.
      Q.

      Did the experience change how you interact with patients?
      A.

      After my surgery, I was a very different person, with very little motivation and energy. We had just rearranged the furniture upstairs and I needed time to re-equilibrate. But one rarely hears doctors talking about the transition after surgery and how it can go in many different directions because most physicians have no clue of the implications of the diseases or their treatments.

      One problem I face is whether I should share my own story with patients. I don’t want patients to assume that just because Dr. Smith is doing great, everyone who has epilepsy surgery will as well. My job is to be as realistic as possible about outcomes and risks. With brain surgery, the possibility of a major complication can’t be excluded. This is the brain we’re talking about. Once you take a part of it out, you can’t bring it back.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — June 20, 2021 @ 1:25 PM

  2. great post and an interesting read. Thanks for posting it here. Glad he holds such a meaningful position.

    Liked by 1 person

    Comment by Bill — June 20, 2021 @ 9:50 PM

  3. As well as myself, my Brother also suffered from Epilepsy and we lost him to SUDEP. I remember him having a Grand Mal in a lift in the Chelsea and Westminster Hospital, while a young Dr looked on completely baffled by what was happening. It really is a misunderstood condition. That was a good read though, Dr Smith is an inspiration.

    Liked by 1 person

    Comment by Shelly — June 21, 2021 @ 4:29 AM

  4. Hi Phyllis,

    Thank you for your ongoing site.

    Neither my husband (William Lipkin) nor I were able to open and view this article. Perhaps it has something to do with our past NYT subscriptions. Is it possible to read it somehow? Do you have suggestions?

    Thanks in advance. May you have a lovely day!

    Julie Wegscheid jawegscheid@gmail.com William Lipkin wslipkin@gmail. com

    Liked by 1 person

    Comment by Julie Wegscheid — June 21, 2021 @ 1:15 PM

    • Julie, just look at the 2nd entry in comments. I printed it out because someone else couldn’t read it either!

      Like

      Comment by Phylis Feiner Johnson — June 21, 2021 @ 1:57 PM

  5. Thank you so much for sharing this article. Frequently I have wished that my MD could walk in my shoes (for up to at least 2 weeks) in order to understand what it feels like to face this challenge daily. (This includes not being allowed to drive a car, and losing your job because of the other person’s fears… and of course, the negative side effects of the medications!!). I have come through 2 brain surgeries (in 2009 and 2010), and had to basically relearn everything! I still deal with word finding problems. I know what I want to say, but come out with a wrong word… No, I’m not crazy, my L temporal area had tissue removed during the surgeries! It’s easier for me to communicate more clearly when I type up a note. I’m so grateful that I have been back working as an Occupational Therapist (on a part-time basis). The people that I treat have so many more problems than I face. My life experiences/ challenges have made me more sensitive when providing the needed follow-up care for my clients. I have also started using the R side of my brain more (in various types of artwork), and now have started to sell some of my work. Despite the fears, prejudices and lack of education in the lives of other people, Each one of us can bless others in the work that we do. Something else that so many MD’s lack is education related to vitamin therapy as an adjunct to the treatment protocol. The seizure meds eat up too much of the needed nutrients for our bodies (including the brain). When are the Neuro’s going to start to look at their patients as whole people, and not just someone they are afraid to treat? It’s 51 years that I am now taking seizure medications!! And it truly has been a battle zone! Maire’ Archbold

    Liked by 1 person

    Comment by Maire Archbold — June 22, 2021 @ 11:48 AM

  6. Wow Maire, I’d say you’re not only a survivor, you’re an over-achiever! 🙂

    To think of all you’ve gone through and despite the odds, you’ve made a remarkable life for yourself.

    Compensating with the right side of your brain and becoming an artist as well as an occupational therapist.

    Few could claim that talent and sensitivity — with all of their brain intact!

    As far as nutrients go, this article may interest you:

    Brain Food for Your Health… https://epilepsytalk.com/2017/07/28/brain-food-for-your-health/

    Like

    Comment by Phylis Feiner Johnson — June 22, 2021 @ 12:15 PM

    • Phylis, thank you so much for your reply. Yes, I have been aware of the nutrients needed to help with the seizure control, from a book called: PRESCRIPTION FOR NUTRITIONAL HEALING by Phyllis A. Balch, CNC. It contains info about so many other physical problems as well! Thanks so much for stepping in to help in so many of our lives. Maire’

      Liked by 1 person

      Comment by Maire Archbold — June 22, 2021 @ 9:26 PM

  7. Thank you for your note, Maire. It’s my life. It’s my happiness.

    Thanks also for the tip on the book. And sharing it with all of us.

    Like

    Comment by Phylis Feiner Johnson — June 22, 2021 @ 10:01 PM

  8. I will say almost the same comment that Maire said thanking Phylis for illustrating this article and I have a diet problem called celiac sprue – which you can’t digest foods with wheat; rye and barley. And I’m also glad to find out that your medications can absorb the nutrients your body needs as I’ve been struggling with not having enough energy.

    Liked by 1 person

    Comment by Leon Chavarria — June 23, 2021 @ 5:00 PM

    • Leon, thank you so much for sharing your burdens. I pray that God does direct you to the best way to proceed (diet & nutrition wise). Do check out the book, Prescription for Nutritional Healing (with ISBN#: 158333236-7). I bought mine at a Vitamin store. In that store, the book was not for sale, but was available to look up needed information. You just have to ask the staff member(s). I’m going to keep you in prayer. When we are going through the physical battles, we always need someone else to hold our arms up in prayer! Shalom. Maire’

      Liked by 1 person

      Comment by Maire Archbold — June 23, 2021 @ 7:11 PM

  9. Great article & inspiring testimonies from many determined people who lived through the firestorms to share their experience with the rest of the world.
    It’s fascinating to note that when the going gets though, the though keeps going beating formidable odds.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — June 23, 2021 @ 10:28 PM

  10. Phylis Feiner Johnson, even though Neurologists who specialize in Epilepsy management have a great level of knowledge on the matter, I think that medical care providers who also have Epilepsy would be able to relate to the patient more because of shared experiences.

    Liked by 1 person

    Comment by ragnarsbhut — July 28, 2021 @ 11:53 PM


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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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