Overcoming obstacles with Optimism

A neighbor phoned me. “Tara, my wife just called.  She thought she was going to have a seizure.  I called the ambulance.  Can you go up there and check?  I am on my way home.”

This family is not new to epilepsy, but it is still concerning when seizures occur.  I ran up there as quickly as I could.  The ambulance had already arrived.  By the time I reached the front door, paramedics had started their assessment.  The stretcher was slightly inclined facing away from me.  As they turned her, I could see her eyes were closed.  It appeared she was peacefully resting.  Except, it was obvious the questions these paramedics were asking were not getting through to her.  Saliva had run down the side of her face.  I was assured she was okay other than being postictal (the last period of a seizure when the brain is recovering).  As she was being rolled out, I heard these young men say to her, “Tell us your name.  Do you know where you are at?”

I told her, “Don’t worry about answering these questions.  You are safe.  You’re going to be okay.  These guys are going to get you looked over.  You had a seizure, but you are going to be fine.”  Then I turned towards the paramedics and quickly said, “Those are scary questions to wake up to.  Start by addressing her by name, and then tell her where she is now and where you are taking her.  Don’t expect her to know.  She is not aware of anything right now.  Please, don’t scare her.  Help by comforting her and then ask your questions after you can see she is awake.  The way you are asking is very, very intimidating and makes it harder to adjust to the frightening situation she will wake to find.”  These men must have thought I was speaking out of turn.  They quickly asked me to go home and wait.  They said they had to take her now and get her checked.  At that, they slammed the ambulance door and stayed parked for another five minutes.  I knew they were just doing their jobs and following the procedures they had been taught.  Unfortunately, I also knew this peppering of questions is the scariest way to wake when you lose track of time and find yourself surrounded by an unfamiliar environment.  I was not speaking out of turn; rather, I was speaking as a patient who woke up too often on that cold, terrifying stretcher.

Then I was left to wait.  My neighbor who asked for help is a police officer.  That is how he was able to dispatch the ambulance so quickly.  He is lucky; his workforce takes care of each other.  Soon after the ambulance doors closed I saw emergency lights coming down the street.  A second police car quickly turned our corner.  Then another one arrived.  Three doors opened.  Three frantic men stepped out each wearing a tan uniform with a hat.  These three men gathered near the front door anxiously looking up the street, then at the ambulance and then at each other over and over again.  I could not tell if they were waiting for the husband or if he was one of the anxious officers looking around.  With prosopagnosia leaving me with no ability to recognize a face, this situation became a lot more intimidating.  Do I just limp up towards them and ask, “Do one of you live here?”  Do I ask, “Which one of you just called me?”  Do I say, “I walked up here and she looked peaceful.  Have you seen her yet?”  Possibly the husband familiar to me was not here yet.  Maybe I should wait.

I had been fearful of needing to speak with cops since face blindness became a part of my life.  I never expected it in this context though.  Normally my worry is developed from thoughts of having to identify someone or recall specific details of a person after a crime.  I never thought of the cop being someone I knew.  I never expected the situation not to be about a crime but about a bad seizure.  I had to watch someone suffering just as other people previously had to watch me.  I waited for one officer to approach me and speak first.  He said thank you, and through his voice I knew this was the man who called me only minutes before.

My neighbor was okay and returned home later that day sore and tired.  Concern left my heart and awe filled my mind.  The seizure: Once again I realized truth in these words, “A seizure is much more painful for the bystander observing it than to be the one experiencing it.”  The cop: Luckily, he identified me.  There was no need for me to notice specific details…this time.  It is still an intimidating feeling and thought though.  Prosopagnosia: It is not a disorder that only shows itself every now and then.  Rather, it is a lingering condition that I notice every time a person walks by me.

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Comments on: "The Seizure The Cop The Prosopagnosia Experience" (13)

  1. You made a really good point about how scary those questions would be. Have you ever thought of training EMS workers in how to talk to someone coming out of a seizure?

    • I try to help doctors and EMS workers learn from my experiences whenever I can. I am also aware though that every seizure experience is different. What works best for me will not be best for everyone. Yes, I have thought about lecturing for classes. If I were ever invited, I would be excited to do so. As I said, I really want people to learn for what I have gone through.

      Thanks, Tracy, for stopping by! I hope you are having a great weekend.

  2. Tracy’s suggestion is a really good one —
    I’m sure EMS workers were never encouraged to think about the other aspects of helping, and how to help — and how that is received from the point of view of a patient.

    • Judith,

      I only hope I made a small impact. I know they were doing what was expected of them. I also know that it is a very frightening to wake up in that situation. It is stressful for everyone involved.

      Thanks for taking the time to leave your comment.

      Tara

  3. I agree with everything that Tracy and Touch2Touch have said. However, every situation is different. EMPs and hospital staff need training and on-going professional development about how to treat each individual as an individual.

    My story is different (How many times do we say that?) I had my first tonic-clonic seizure in a car that my wife was driving. Apparently I was talking to her and all of a sudden I was out like a light. She called 911 and I was still unconscious when the ambulance arrived. I had 3 more seizures in the next 30 minutes. Two were in the ambulance and one in the ER. I never regained consciousness until 3 days later.

    When I regained consciousness, I was in a regular hospital room with a nurse checking the monitors to which I had been attached. I could see my wife sleeping in hte recliner in the room. As I started to stir, the nurse said, “Well, look who’s back.” I said “Where was I am?” At that point, the nurse asked “Do you know where you are?” I said “I’m in a hospital room, but I have no idea how I got here.” The nurse then asked, “Do you know who you are/” I quickly responded with my name and birthdate. The nurse said, “Your certainly know the drill.” Then she asked me if I knew what day it was. I said, “If I can believe your white board, it’s January 2.” SHe said, “Tthat’s correct, you’re very observant. Do you have any questions?” I responded something to the effect, “Well duh, what happened? How did I get here?” She said let me get the doctor. She hit a call button on one of the monitors and within a couple of minutes, a doctor appeared. In the meantime, my wife woke up and came over to the bed and said you scared me. I told her the last thing I remembered was riding in the car and passing a particular building. She said just after we got past that building, you made a strange sound and every muscle in your body went stiff. She said she screamed, but I wouldn’t respond. She continued by saying, I pulled off the road and dialed 911 on my cell phone. The dispatcher asked her where she was. She said she was so shook up, she couldn’t tell him. The dispatcher said, “That’s okay, i’ve got you on our GPS locator from your cell phone. We’re right around the corner, we’ll be there in a minute. Literally they were right around the corner. When I had the seizure, we were within a mile of the ambulance’s garage.

    My wife said when the EMPs arrived, they asked her what happened. SHe explained it as best she could, She said they were very courteous and professional. They told her it appeared as if I had a seizure. They asked her if I had ever had one before and said NO. They said, Don’t worry, his vital signs are good; we’ll get him to the hospital and he’ll be alright. They asked her to which hospital they should take me. She told them as they picked me up out of our van front seat and placed me on a stretcher and loaded me in the ambulance. They asked her if it would be alright if they cut me clothes to get them off of me. I was stiff and they couldn’t get my jacket off. They also cut my pants off because my bladder had released when I had the seizure. They reassured my wife that those kind of things were usual with tonic-clonic seizures. They asked her if she was going to be alright to get to the hospital. SHe said yes, so the ambulance took off. My wife couldn’t keep up with the ambulance, so I was already in the ER when whe arrived.

    My wife said the ER personnel were very friendly and professional. They tried to explain what had happened and that I would be okay when I regained consciousness. THe one thing they didn’t tell her was that it could take 3 days for that to happen. She said as each day would pass, the medical staff would try to comfort her and say everything’s fine. It’s just going to take time.

    Getting back to me encounter witht he nurse. After a few minutes the neurologist that I had been seeing since the removal of the brain turmor appeared in the room. She said “How are you? I respond, “I don’t know, You tell me. What happened?” SHe told me that I had four seizures and that I now appeared to me “back to normal.” However, because of the seizures, she wanted to put me on antiseizure medication immediately. I said, “If it’s going to keep me from losing 3 days, I’m fine with that.” She said there’s no garauntee but that the medications have a high rate of success. I then asked the question. Does this mean, “I have epilepsy?” She responded, “Since you had 4 seizures, yes, you have epilepsy?” I asked her if that means I won’t be able to drive. She said that for six months she would not recommend that I do any driving. In our state, doctors are not required to report incidents of seizures to motor vehicles. However the state also says that a person has to be seizure free for six months before they will issue or reissue a driver’s license. I said “Oh great, that’s not what I wanted to hear.” This whole time the nurse was in the room watching and listening and laughing. When the doctor left, the nurse asked me if I always the comic. I didn’t get a chance to answer, because my wife piped in, YES.

    Two days later, a new duty nurse came in the room and the first thing she said was “Well, you’re the comedian that I have heard so much about.”

    THere’s a time for everything under the sun. I try to make as much of the time as light as I can. I believe the EMP and hospital staff reacted to me in the way that they did because of how I acted toward them. I saw the same hospital staff treat other patients differently because that’s what those patients needed.

  4. Jo Livingston said:

    Tara, I’m currently editing a book on face blindness – a collection of anecdotes from people all over the world. I would like to include this story if you are willing. If you’re interested contact me on Jo_Livingston@hotmail.com

  5. To Tara and the deidicated readers of Finding Strength to Stand Again, please accept my humble apologies for the verbose and self-centered comments: the one yesterday and the one today. The following is not an excuse, but a partial explanation that I hope will help others understand how some people who are not having a particularly good day try to deal with it. And I was not having a particularly good day yesterday. How do I try to handle a bad day? I want to talk it out.

    Yesterday, My eye doctor confirmed what I had suspected. My cataracts were getting worse and needed to be removed. Not a big problem considering what others like you Tara, and many of your readershave to go through, but it is a nuisance on top of what seems to be a casading pile of small small difficulties. I was at an uriologist’s office earlier in the week with some urianary track problems. We discussed alternative solutions none of which were appealling to me.

    My body seems to changing the way it processes my heart and seizure medications differently. My week blood draws show consistently fluctuating levels, to such an extent that my neurologist and cardiologist make weekly changes to my medication dosages. Thank God, the seizures medications are controlling major seizues. I have had no major seizures for almost a full year (Anniversary: Dec 29). However, I have had lots of small episodes, auras, sensory migraines, absences, etc. They went away for a couple of months but seem to be returning. I keep seeing and hearing things that aren’t there. In the shower yesterday, when I was rinsing the shampoo out of what hair I have left, I kept hearing hard rain striking a tin roof. I am still enough of a scientist to do some experiments. The only time I heard the tin roof sound was when the hand held shower spray would hit my head directly.

    The most frustrating thing for me yesterday was what happend when I tried to finish the next installment of Skeletons in the Closets of AMerican Higher Education on my education blog. THe next installment needs to be the historical development of liberal arts education through the Roman and Medieval periods. These developments have direct impact on modern educational theories and processes. However, I could not put my thoughts into coherent words.I also had some ideas for my aphasia and epilepsy blogs, but again the words would not come together.

    I find it absolutely amazing how the human brain works. The wonderful places that it can take us are limitless. However, it is also unpredictable.Getting up in the morning I can’t predict what kind of a day it’s going to be. Will I be living in a metaphoric world where every is in pictures, or an analytic world, where everything is a series of understandable cause and effect statements. The best I can do is live the day as God gives it me.

    • I cannot even begin to comprehend all you have been through in the past few years. Please do not apologize. I want everyone to learn from me, and your lessons will help provide valuable knowledge also.

      I am so glad your family is there for you. Your wife’s support is amazing. Your church and family friends are also very beneficial as you make your way down this new, unstable path. I keep you in my thoughts and only wish for good things come your way.

      Feel free to stop by anytime you would like. I enjoy reading and learning ofyour life lessons.

      Warm Wishes,
      Tara

  6. EMS is always a scary experience, isn’t it? I like your wisdom about all the questions. It sounds more like an interogation of someone who is already sick and afraid.

    More confusion caused by your condition. It seems like the situations are never ending. It must be nerve wracking. I hadn’t considered the possibility of a crime scene and wanting to do your part to identify people, contribute to the solution.

    Just wondering… my eye doctor suspects damage to the optical nerve in my left eye. She says I may have blind spots that I’m compensating for already. I have to go for a field test next week. Should I be in a panic? I’ll admit I’m pretty scared and internet research has not offer much comfort or wisom. Any ideas?

    Great story… love the way you write! Hugs… : )

    • Linda,

      I have been through many field tests. If that is your concern, rest easy. They are a breeze. I have been through the high tech ones using programmed computers and a bright screen within a darkened room to the low-tech” can you see this little ray of light?”

      If you are asking about the optical nerve damage it will be best to see how much damage and -most of all- what caused it. I think it is amazing though how our bodies and minds are able to compensate for what we never even had time to realize needed compensation. Any altering of our body is difficult, but it is exciting to see how our mind allows a band-aid created by healthy body functions.

      Please do keep us updated on how the test comes out for you. I will be anxiously waiting to hear what you learn.

      Sending you happy thoughts!
      Tara

  7. Great info post Tara. I was listening to NPR and they had a panel of women who lost children, or who were caring for terminal ill children. I did not get a chance to call in, but they were also giving great info to parents out there.

    I wanted to tell parents that if they could rally together, or get support like you are giving, it would help the process in the long run. I did not take advantage of support groups or even putting in my five cents like you are. I am hoping to do something now.

    Thanks Tara, your journey is yet to end…

    E

    • You are very correct. It would help so much in the process of coping and healing. Thank you for giving us your additional five cents and so much more! 🙂 I always gain something from your thoughts. You have been through a lot and we all can learn from the lessons you have lived through and the strengths you demonstrate. Thank you for stopping by and taking time to offer us these words.

      Tara

  8. […] another great story about perspective and being in someone else’s shoes, read here about a woman who experiences seizures and was able to help her friend through a […]

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