Not as you might think, I took The Pill. Not The Pill, but, The Pill, nonetheless. Not as a young woman, but, as a young child--a six-year-old, perhaps.
Born not of an egg, but, of tissue wrapping my left brain--scar tissue. Five times, at birth, my umbilical cord was roped around my neck. Five times, my umbilical cord--my Boa--constricted the flow of oxygen to my brain. The Boa choked the left side of my brain lifeless. The Boa wrapped my brain in tissue--scar tissue.
The Boa damaged my brain for life.
The Boa chokes me. Not satisfied to choke me once for all time, the Boa wraps around my neck
again and again. He charges my brain with surges of electrical energy. Bolts of lightning travel from my brain down through my right arm to my right leg. In thunderous storms, the Boa wraps himself more tightly around the left side of my brain.
As the winner of a bad Miss America contest, the Boa falls into a satin Miss Seizure America sash. Through the satin sash surges the seizures electrical energy. From left side of my brain down across to my right arm and right leg the lightning bolt travels.
Not concerned with my eggs' cycles, my eyes see no further than The Boa's wrap.
Not as you might think, I took The Pill. Not The Pill, but, The Pill, nonetheless. Not as a young woman, but, as a young child--a six-year-old, perhaps.
Not as you might think, I remember, "The First Time."
With great anticipation of an unimaginable "present," I received a gift I did not request--a gift I needed.
I sat at the round, teak, dinning room table. With my brother, sister, and dad, I waited. I looked out the window. On the long driveway, my eyes were fixated. The Saturday morning sunshine lit the auburn, teak dining room table. We sat. We waited. Beyond the blond pocket door, Mom prepared a special breakfast. Pancakes, perhaps. Something to soften what was being forced down my throat.
Before me was presented a pale, yellow-faced pill. A small, triangular pill. Dilantin, Mom tells me. It is chewable. Hmmmm.....What will it taste like.
I place the pill into my mouth. I bite down. Not bad. Not sweet. Not candy. I never liked candy, anyway.
Showing posts with label Epilepsy Chronicles. Show all posts
Showing posts with label Epilepsy Chronicles. Show all posts
Tuesday, September 27, 2011
Saturday, September 17, 2011
Epilepsy Chronicles: Humor
Humorous? Yes. Humorous.
There are many serious aspects to having epilepsy--to having seizures. It is not a joke.
Yet, there have been precious moments--precious in their absurdity. Neurologists have an amazing sense of humor. They call it bedside manner.
The same neurologist, who told public television viewers this week that people with epilepsy foam at the mouth, once asked me, "how long did the seizure last."
I went into the neurologist following the seizure to have my blood levels checked. Did my medication levels need to be increased or decreased, so as to prevent future seizures? I understood the reason behind his question. He had known me for some time. He knew I lived alone. Knowing that, he still asked, "How long did the seizure last?"
A part of me was tempted to say, "Well, let's see, I looked at the clock and it said 6:40am, and I started seizing. I looked at the clock at 6:42am, and I stopped seizing. Gees. I guess I should have looked. After all, I was just lying on the floor. I wasn't doing anything at the time."
Come on, give me a break. I had a few more pressing things on my mind at the time.
"Get down to the ground. Get away from things I could grasp onto." I chanted to myself.
Equally humorous to the neurologist's question is my subsequent behavior. Since that time, I make sure to look at the clock when I feel a seizure coming on, and once again when the seizure stops. If I am lucky, my exhausted brain, and my memory will not be so impaired as to prevent me from remembering the length of the seizure. I try to be a compliant patient:) Sometimes, I go overboard:)
But, far more humorous than that incident happened several years later. I was in a neurologist's waiting room. A different neurologist. I was awaiting an appointment with him. Suddenly, I started to have a seizure. Fellow patients knew precisely what to do, and went into action calmly. The neurologist was called. He came out to the waiting room.
"Are you OK?" he asked.
"Am I OK? Sure, I always wanted to come to your office and have a seizure! Am I OK? Have you ever seen a seizure before? Am I OK!" I thought.
In my 40+ years of experience with seizures, that remains my favorite seizure experience.
There are many serious aspects to having epilepsy--to having seizures. It is not a joke.
Yet, there have been precious moments--precious in their absurdity. Neurologists have an amazing sense of humor. They call it bedside manner.
The same neurologist, who told public television viewers this week that people with epilepsy foam at the mouth, once asked me, "how long did the seizure last."
I went into the neurologist following the seizure to have my blood levels checked. Did my medication levels need to be increased or decreased, so as to prevent future seizures? I understood the reason behind his question. He had known me for some time. He knew I lived alone. Knowing that, he still asked, "How long did the seizure last?"
A part of me was tempted to say, "Well, let's see, I looked at the clock and it said 6:40am, and I started seizing. I looked at the clock at 6:42am, and I stopped seizing. Gees. I guess I should have looked. After all, I was just lying on the floor. I wasn't doing anything at the time."
Come on, give me a break. I had a few more pressing things on my mind at the time.
"Get down to the ground. Get away from things I could grasp onto." I chanted to myself.
Equally humorous to the neurologist's question is my subsequent behavior. Since that time, I make sure to look at the clock when I feel a seizure coming on, and once again when the seizure stops. If I am lucky, my exhausted brain, and my memory will not be so impaired as to prevent me from remembering the length of the seizure. I try to be a compliant patient:) Sometimes, I go overboard:)
But, far more humorous than that incident happened several years later. I was in a neurologist's waiting room. A different neurologist. I was awaiting an appointment with him. Suddenly, I started to have a seizure. Fellow patients knew precisely what to do, and went into action calmly. The neurologist was called. He came out to the waiting room.
"Are you OK?" he asked.
"Am I OK? Sure, I always wanted to come to your office and have a seizure! Am I OK? Have you ever seen a seizure before? Am I OK!" I thought.
In my 40+ years of experience with seizures, that remains my favorite seizure experience.
Epilepsy Chronicles: Misinformed
Deeply disturbing information was disseminated, and stereotypes were reinforced last night during a television interview. On September 10,2011, University of Minnesota football coach--Brad Kill--had a seizure during a football game. His players, and colleagues knew of his seizures. I have not met Coach Kill. I report regarding what I understand of him. Media coverage.
I do understand what it is to have a seizure. I have had seizures since childhood. I am 51. Each individual's seizures are different. Yet, I am compelled to respond to the misinformation given, and stereotypes reinforced by a neurologist last night.
Most disturbing of what the neurologist said? Something to the effect of, "People with epilepsy foam at the mouth."
This is not true. Case closed.
"Seizures are frightening."
Yes. Both for the observer, and for the person having the seizure.
However, fright is not an excuse to stand by--panic. You can help.
First, it is possible that an individual having a seizure may be able to hear what is being said during a seizure. Often, I am. Yet, the excessive electrical activity in the brain--the anatomical thunderstorm--drains me of the energy that otherwise I would use to respond.
Second, not holding an individual during a seizure may be too extreme of a directive. Beyond getting the medical attention I need, the most helpful--reassuring--action ever taken was from a colleague. While my right leg was convulsing--shaking violently--she caressed my leg. She told me I had done nothing wrong, I had no reason to feel embarrassed, and I would be OK.
She caressed my leg.
My colleague trusted what I had said--valued what preferences I had expressed to her regarding my seizures--such that she resisted the nurse who said not to hold my leg. She was not restraining me from movement. She was touching me firmly--reassuringly. There is a huge difference. Never have I heard a medical professional make that distinction. There is a difference--a huge difference.
As to embarrassment--being embarrassed by having a seizure--I understand.
Yet, far more embarrassing than any seizure could be ever is not telling someone how you prefer to have your seizures handled, if you have seizures.
Early in my career, my loved ones were concerned about I would say during an interview that I had seizures. I understand. I appreciate their advice. Fear existed, and exists yet today. I assure you, I did not walk into job interviews and say, "Hi, I am Patty Thorsen. I have seizures. Can I have a job?"
I did inform my supervisors, and colleagues that I had seizures. I gave them the basic emergency contact information. I took one more important action. I informed my supervisors, and friends how I preferred to have my seizures handled. Embarrassment, or fear I felt in doing so was mitigated by the knowledge that they would know how to handle my seizures.
Embarrassed by having a seizure? Yes and no. Yes, the times I have had a seizure in public are not my proudest moments. Yet, once I have a seizure, I need to channel every ounce of energy I have, and every ounce that I don't have toward staying as calm as possible during the seizure--praying that the words I spoke about my seizures were heard. During a seizure, I pray that people around me--people who have the energy to take constructive action--are courageous enough to do so.
Whatever embarrassment we well may feel, we--any of us who have seizures--need to channel that embarrassment into helping other people to help us. We need to make an investment in creating calm understanding--not fearful chaos.
Friends and family may offer their loving questions as to how someone with seizures how they wish to have them handled. Whether it be a reassuring word or touch, humor or whatever. Honesty is the only way to dispel awkwardness, fear, and chaos.
I have serious doubts about some medical professionals I have known, and with whom I have had interactions. I have had, and continue to have the benefit of extremely helpful, competent medical professionals.
Yet, the comments made by the neurologist this week made necessary my response.
I do understand what it is to have a seizure. I have had seizures since childhood. I am 51. Each individual's seizures are different. Yet, I am compelled to respond to the misinformation given, and stereotypes reinforced by a neurologist last night.
Most disturbing of what the neurologist said? Something to the effect of, "People with epilepsy foam at the mouth."
This is not true. Case closed.
"Seizures are frightening."
Yes. Both for the observer, and for the person having the seizure.
However, fright is not an excuse to stand by--panic. You can help.
First, it is possible that an individual having a seizure may be able to hear what is being said during a seizure. Often, I am. Yet, the excessive electrical activity in the brain--the anatomical thunderstorm--drains me of the energy that otherwise I would use to respond.
Second, not holding an individual during a seizure may be too extreme of a directive. Beyond getting the medical attention I need, the most helpful--reassuring--action ever taken was from a colleague. While my right leg was convulsing--shaking violently--she caressed my leg. She told me I had done nothing wrong, I had no reason to feel embarrassed, and I would be OK.
She caressed my leg.
My colleague trusted what I had said--valued what preferences I had expressed to her regarding my seizures--such that she resisted the nurse who said not to hold my leg. She was not restraining me from movement. She was touching me firmly--reassuringly. There is a huge difference. Never have I heard a medical professional make that distinction. There is a difference--a huge difference.
As to embarrassment--being embarrassed by having a seizure--I understand.
Yet, far more embarrassing than any seizure could be ever is not telling someone how you prefer to have your seizures handled, if you have seizures.
Early in my career, my loved ones were concerned about I would say during an interview that I had seizures. I understand. I appreciate their advice. Fear existed, and exists yet today. I assure you, I did not walk into job interviews and say, "Hi, I am Patty Thorsen. I have seizures. Can I have a job?"
I did inform my supervisors, and colleagues that I had seizures. I gave them the basic emergency contact information. I took one more important action. I informed my supervisors, and friends how I preferred to have my seizures handled. Embarrassment, or fear I felt in doing so was mitigated by the knowledge that they would know how to handle my seizures.
Embarrassed by having a seizure? Yes and no. Yes, the times I have had a seizure in public are not my proudest moments. Yet, once I have a seizure, I need to channel every ounce of energy I have, and every ounce that I don't have toward staying as calm as possible during the seizure--praying that the words I spoke about my seizures were heard. During a seizure, I pray that people around me--people who have the energy to take constructive action--are courageous enough to do so.
Whatever embarrassment we well may feel, we--any of us who have seizures--need to channel that embarrassment into helping other people to help us. We need to make an investment in creating calm understanding--not fearful chaos.
Friends and family may offer their loving questions as to how someone with seizures how they wish to have them handled. Whether it be a reassuring word or touch, humor or whatever. Honesty is the only way to dispel awkwardness, fear, and chaos.
I have serious doubts about some medical professionals I have known, and with whom I have had interactions. I have had, and continue to have the benefit of extremely helpful, competent medical professionals.
Yet, the comments made by the neurologist this week made necessary my response.
Sunday, September 4, 2011
Epilepsy Chronicles: A Firm Grip
You have a hold on my right arm and leg no longer. Yet, your grip on me is firm--firmer than I realize. I try to erase you from my memory--put you in the well within me. Yet, I look back to my own words--my sentences. You have a firm grip on my mind. You take words from my sentences. You steal the precious part of me that, so desperately, I want to--I must give.
You give me no clue as to where you are--no hint as to where to look. You give me no key to find you.
Where are you? You are hiding from me. Where are you?
I try to understand.
You give me no clue as to where you are--no hint as to where to look. You give me no key to find you.
Where are you? You are hiding from me. Where are you?
I try to understand.
Tuesday, August 30, 2011
Epilepsy Chronicles: Precursory Shakiness
Honestly, I don't know if what I am about to describe is germane to the Epilepsy Chronicles. I think it is. My thoughts, words, and descriptions deal with brain damage most directly, moreso than epilepsy per se.
I work very hard to stay as calm as is possible--humor, empathy, patience, among other attributes that elude me. These attributes may be seen as laudable, and, in one sense, they may be. Yet, there is a neurological basis that makes these attributes essential. I am not a doctor. I have not studied neurology, or any scientific discipline that might offer me insight.
I can quantify the dosages of anticonvulsants I am prescribed to tame the extra electrical activity in my brain--milligrams. I can quantify the level of anticonvulsants in my bloodstream, which are determined by a blood test--a therapeutic blood level range. Based on my weight, at least, there is a numeric scale established. If the therapeutic blood level is too low, my experience has been that more medication is prescribed. The opposite is true, too. In my experience, blood levels that are too high on that scale lead doctors to prescribe a higher dosage of medications. Sometimes, an altogether different anticonvulsant is prescribed.
Yet, I cannot quantify the threshold I have for anger, and frustration, which leads to shakiness of my whole body--I cannot quantify it for myself or for others. I recognize it myself. All I know to do is to cry, and then, isolate myself until my jangled nerves are tamed, and my body is steadied physically. The crying is the cleansing agent essential to taming the extra electrical activity in my brain.
Compounding my own response, I know that the apologies of other people, well-intended though I know they are, only exacerbate my initial response. Trying to be rational long enough to isolate myself for my necessary cry, and quiet time is extremely difficult. I know that a part of that quiet means removing any activities that I know will involve further neurological agitation. I try to be rational, so as to explain that I can withstand some tension, frustration, and anger. Yet, my rational efforts are useless. My nervous system has been hijacked such that being physically steady is next to impossible.
What I have just described is not a seizure, as I understand it, after having lived with epilepsy for more than 40 years. My description today is fresh to my life--fresh to this moment. After anticipating a personal training session for several weeks--a session to identify further efforts I may take to strengthen my arms, hands, and legs--I met with tremendous disappointment, frustration, and anger that a perfectly understandable mixup in appointment times occurred. Not knowing precisely what to ask for to reschedule--what specific terms to use (a neurosis of mine)--my neurological response is intensified.
I need peace--inner peace, calm, perspective, and determination to reclaim goals I know have been strengthening me, irrespective of reliable help I expected, and hoped I would be given today. I need insight. Am I merely making an excuse for unnecessary, irrational behavior, or is there some credibility to my thoughts--my descriptions?
I work very hard to stay as calm as is possible--humor, empathy, patience, among other attributes that elude me. These attributes may be seen as laudable, and, in one sense, they may be. Yet, there is a neurological basis that makes these attributes essential. I am not a doctor. I have not studied neurology, or any scientific discipline that might offer me insight.
I can quantify the dosages of anticonvulsants I am prescribed to tame the extra electrical activity in my brain--milligrams. I can quantify the level of anticonvulsants in my bloodstream, which are determined by a blood test--a therapeutic blood level range. Based on my weight, at least, there is a numeric scale established. If the therapeutic blood level is too low, my experience has been that more medication is prescribed. The opposite is true, too. In my experience, blood levels that are too high on that scale lead doctors to prescribe a higher dosage of medications. Sometimes, an altogether different anticonvulsant is prescribed.
Yet, I cannot quantify the threshold I have for anger, and frustration, which leads to shakiness of my whole body--I cannot quantify it for myself or for others. I recognize it myself. All I know to do is to cry, and then, isolate myself until my jangled nerves are tamed, and my body is steadied physically. The crying is the cleansing agent essential to taming the extra electrical activity in my brain.
Compounding my own response, I know that the apologies of other people, well-intended though I know they are, only exacerbate my initial response. Trying to be rational long enough to isolate myself for my necessary cry, and quiet time is extremely difficult. I know that a part of that quiet means removing any activities that I know will involve further neurological agitation. I try to be rational, so as to explain that I can withstand some tension, frustration, and anger. Yet, my rational efforts are useless. My nervous system has been hijacked such that being physically steady is next to impossible.
What I have just described is not a seizure, as I understand it, after having lived with epilepsy for more than 40 years. My description today is fresh to my life--fresh to this moment. After anticipating a personal training session for several weeks--a session to identify further efforts I may take to strengthen my arms, hands, and legs--I met with tremendous disappointment, frustration, and anger that a perfectly understandable mixup in appointment times occurred. Not knowing precisely what to ask for to reschedule--what specific terms to use (a neurosis of mine)--my neurological response is intensified.
I need peace--inner peace, calm, perspective, and determination to reclaim goals I know have been strengthening me, irrespective of reliable help I expected, and hoped I would be given today. I need insight. Am I merely making an excuse for unnecessary, irrational behavior, or is there some credibility to my thoughts--my descriptions?
Sunday, August 28, 2011
The Epilepsy Chronicles: A Firm Grip on Me
You have a hold on my right leg and arm no longer. Yet, your grip on me is firm--firmer than I realize. I try to erase you from my memory--put you in the well within me. Yet, I look back to my words--to my writings. You have a firm grip on my mind. You take words from my my sentences. You steal the precious part of me that I want to give. You give me no clue as to where you are. You give me no key to find you. Where are you? You are hiding from me.
I try to understand.
I try to understand.
Saturday, August 27, 2011
Epilepsy Chronicles: The Other Side
I turned the corner. Sixth and Cedar Streets. The 14B bus stop. I have arrived. 1:30 P.M. I am ready. A 2 P.M. appointment with my college adviser. My purpose? To enroll in a pastoral ministry program. I am prepared.
As I round the corner, a man in his mid-60s is struggling to stand up an unresponsive woman from the ground.
"Is she having a seizure?" I ask. I know the answer. I need my question's time to marshal strength.
Is she having a seizure? I think she is having a seizure. This is strange. Not unfamiliar, but strange nonetheless. Never have I been on this side of a seizure.
I grabbed the older man's arm firmly.
"She seems so helpless. Are they ever going to get here?" the man cried plaintively.
"Let the woman sit here on the bench. The police are on their way. I know it seems like a long time...
You have no idea how much I understand...the time warp...I understand...seconds seem like minutes...minutes seem like hours...I understand...believe me, I understand.
Several minutes later, help arrived. Finally, help has arrived. She will be safe now. The paramedics arrived. She will get medication in her bloodstream immediately--anticonvulsants. They will minimize recurrence of such seizures.
...
Moments later, the 14B bus arrived. I was off to meet my college adviser. I was off to explore enrolling in a pastoral ministry program.
I boarded the bus. I sat down. Suddenly, tears came streaming down my face. I lost my composure completely.
My witness at the bus stop was no accident.
As I round the corner, a man in his mid-60s is struggling to stand up an unresponsive woman from the ground.
"Is she having a seizure?" I ask. I know the answer. I need my question's time to marshal strength.
Is she having a seizure? I think she is having a seizure. This is strange. Not unfamiliar, but strange nonetheless. Never have I been on this side of a seizure.
I grabbed the older man's arm firmly.
"She seems so helpless. Are they ever going to get here?" the man cried plaintively.
"Let the woman sit here on the bench. The police are on their way. I know it seems like a long time...
You have no idea how much I understand...the time warp...I understand...seconds seem like minutes...minutes seem like hours...I understand...believe me, I understand.
Several minutes later, help arrived. Finally, help has arrived. She will be safe now. The paramedics arrived. She will get medication in her bloodstream immediately--anticonvulsants. They will minimize recurrence of such seizures.
...
Moments later, the 14B bus arrived. I was off to meet my college adviser. I was off to explore enrolling in a pastoral ministry program.
I boarded the bus. I sat down. Suddenly, tears came streaming down my face. I lost my composure completely.
My witness at the bus stop was no accident.
Saturday, August 6, 2011
Epilepsy Chronicles: Ignorance. Understanding. Transformation.
My epilepsy--my brain damage--may not be willed away. Others may not wish it so, and be so fulfilled. I may not will it away--whatever amount of strength and stubbornness I will, I may not be so fulfilled.
"Focus on the positive and ignore negative behavior," Mom's words reverberate in my memory yet today.
Ignorance was never an answer. Ignorance was never the answer for me. Ignoring the ignorance of other people will not lead to a positive result. It never could be. Adding two negatives to render a positive result may work in arithmetic. Never was I a star math student--not by a long shot. But, my life is not an equation--it never was. It never will be. I will never will it to be so.
Other factors were at work. Other factors are at work.
Ignorance--ignorance of others--is not a manifestation of malice. It can't be. I am not a servant of malice. I cannot, I will not be. The only hope of advancing understanding is to be willing to learn--to be committed to look inward...to the knowledge of other people, to the language they speak.
Malice is not an evil in which I may invest myself. The return on investment--for me, for God, for others--serves no one. Evil is not a commodity in which I may invest my resources--my being.
Ignorance--my ignorance of other's experiences, and motives--is an indulgence I can ill afford. To the contrary, ignorance, doubt, questions, and anxiety are--must be--invitations to which I engage my being. I cannot presume that I have the answers--the answers universal to everyone with seizures, cerebral palsy, or osteoarthritis, for that matter. Too many variables are involved in the equation to arrive at one simple answer of facts.
"Focus on the positive and ignore negative behavior," Mom's words reverberate in my memory yet today.
Ignorance was never an answer. Ignorance was never the answer for me. Ignoring the ignorance of other people will not lead to a positive result. It never could be. Adding two negatives to render a positive result may work in arithmetic. Never was I a star math student--not by a long shot. But, my life is not an equation--it never was. It never will be. I will never will it to be so.
Other factors were at work. Other factors are at work.
Ignorance--ignorance of others--is not a manifestation of malice. It can't be. I am not a servant of malice. I cannot, I will not be. The only hope of advancing understanding is to be willing to learn--to be committed to look inward...to the knowledge of other people, to the language they speak.
Malice is not an evil in which I may invest myself. The return on investment--for me, for God, for others--serves no one. Evil is not a commodity in which I may invest my resources--my being.
Ignorance--my ignorance of other's experiences, and motives--is an indulgence I can ill afford. To the contrary, ignorance, doubt, questions, and anxiety are--must be--invitations to which I engage my being. I cannot presume that I have the answers--the answers universal to everyone with seizures, cerebral palsy, or osteoarthritis, for that matter. Too many variables are involved in the equation to arrive at one simple answer of facts.
Epilepsy Chronicles: The Other Face
Some coworkers feared I might have a seizure on command. Others feared it happening in their presence. I understand. Being out of control of my body in my mind's eye. I understand. Yet, not moreso than when I happened upon a seizure of a man awaiting a bus.
"Focus on the positive, and ignore negative behavior," Mom chants in the deep reaches of my memory. From my earliest memory, "Focus on the positive, and ignore negative behavior."
I understood what he needed. Not medically. Yet, I knew what help he needed from the many helpless people who surrounded him. I knew the helpless individuals, who surrounded him, were far from helpless. While others surrounding me were viewing their first seizure, I was on the other end of the seizure. I understood what he needed.
I had never met the seizing man before witnessing his seizure. I have not seen him since that day.
Yet, I was given a voice--words to speak---for a reason. I am not committed to vengeance against other individuals. Yet, I can and must commit myself to positive vengeance against the excessive electrical energy in my brain, the root of my disabilities. I can and must be the human irritant--the nacre--that contributes to pearls of understanding.
"Focus on the positive, and ignore negative behavior," Mom chants in the deep reaches of my memory. From my earliest memory, "Focus on the positive, and ignore negative behavior."
I understood what he needed. Not medically. Yet, I knew what help he needed from the many helpless people who surrounded him. I knew the helpless individuals, who surrounded him, were far from helpless. While others surrounding me were viewing their first seizure, I was on the other end of the seizure. I understood what he needed.
I had never met the seizing man before witnessing his seizure. I have not seen him since that day.
Yet, I was given a voice--words to speak---for a reason. I am not committed to vengeance against other individuals. Yet, I can and must commit myself to positive vengeance against the excessive electrical energy in my brain, the root of my disabilities. I can and must be the human irritant--the nacre--that contributes to pearls of understanding.
Epilepsy Chronicles: The Morning After
...
Slowly...ever so slowly....I awaken from a deep sleep. I awaken. I have slept off my throbbing headache. Or so I think. Is my epileptic hangover over?
Can I be so bold as to hold out that hope?
Slowly, I question....
Was that just a bad dream--a nightmare--or did I have a seizure last night?
My headache is gone. Will I have another seizure?
My knees feel wobbly. The firmness of my step tentative. Will I have another seizure? Honestly, I don't know. But, I can't admit that, at least not to everyone.
What can I do? What should I do? What action will give me what I need--what we need, to move us forward from doubt, uncertainty, and fear? God, I don't think I am being selfish. But, what can I do? What should I do?
I can't add to the doubts, and anxiety of my coworkers as to whether I will have another seizure. God knows, some people are convinced that I can have a seizure on command, without my feeding into their fears.
I need their confidence in me. So, what do I do? How do I garner that confidence--that positive energy?
Slowly...ever so slowly....I awaken from a deep sleep. I awaken. I have slept off my throbbing headache. Or so I think. Is my epileptic hangover over?
Can I be so bold as to hold out that hope?
Slowly, I question....
Was that just a bad dream--a nightmare--or did I have a seizure last night?
My headache is gone. Will I have another seizure?
My knees feel wobbly. The firmness of my step tentative. Will I have another seizure? Honestly, I don't know. But, I can't admit that, at least not to everyone.
What can I do? What should I do? What action will give me what I need--what we need, to move us forward from doubt, uncertainty, and fear? God, I don't think I am being selfish. But, what can I do? What should I do?
I can't add to the doubts, and anxiety of my coworkers as to whether I will have another seizure. God knows, some people are convinced that I can have a seizure on command, without my feeding into their fears.
I need their confidence in me. So, what do I do? How do I garner that confidence--that positive energy?
Epilepsy Chronicles: In the Throes...
I fear the worst. My body is out of control.
Relieve me of my consciousness. At this moment, relieve me of my consciousness. Help me. God, help me. Help me to hang on.
My right arm and leg are falling off my body.
God, help me. ... Mom, help me. I need you. Mom, help me.
Home alone, I cry as though Mom can hear me from the next room.
Mom, help me. I need you.
"You will learn to live independently," she said. "You will learn to live independently."
My roommate is gone. I need you. How dare you leave me in my time of need! How dare you leave me in my time of need.
I am alone. Someone has been here, always someone has been here--within earshot of my cries. However embarrassed, or shame filled I have been that I have not taken my medicatiion, someone has been within earshot.
I am alone.
Maybe if I turn on my right side, my arm and leg will stop shaking. Maybe, they won't fall off my body. What else can I do?
Relieve me of my consciousness. Let me sleep. My head is throbbing. Let me sleep off my throbbing headache. My head is throbbing.
Finally, without my knowing, sleep is given to me. My consciousness relieved.
Relieve me of my consciousness. At this moment, relieve me of my consciousness. Help me. God, help me. Help me to hang on.
My right arm and leg are falling off my body.
God, help me. ... Mom, help me. I need you. Mom, help me.
Home alone, I cry as though Mom can hear me from the next room.
Mom, help me. I need you.
"You will learn to live independently," she said. "You will learn to live independently."
My roommate is gone. I need you. How dare you leave me in my time of need! How dare you leave me in my time of need.
I am alone. Someone has been here, always someone has been here--within earshot of my cries. However embarrassed, or shame filled I have been that I have not taken my medicatiion, someone has been within earshot.
I am alone.
Maybe if I turn on my right side, my arm and leg will stop shaking. Maybe, they won't fall off my body. What else can I do?
Relieve me of my consciousness. Let me sleep. My head is throbbing. Let me sleep off my throbbing headache. My head is throbbing.
Finally, without my knowing, sleep is given to me. My consciousness relieved.
Sunday, July 31, 2011
Epilepsy Chronicles: How Long Did It Last?
"How long did the seizure last?"
You know I live alone! Let's see...I should be able to figure that out. After all, I wasn't doing anything. Oh, that's right, I forgot. I know that I am lucky, because I usually get an aura--a feeling like you get when coming inside on a sunny day. So, I knew to look at the clock before the seizure started. Once the seizure stopped, I looked at the clock again. Based on that the seizure lasted....Get real...my attention was hardly directed toward how long the seizure lasted.
I do know it is important information to him. I know that my neurologist can diagnose a seizure, in part, by its duration.
How do I tell you that there is more to my seizure than its length? How can I convey to you--you know--I live alone. I am capable of doing so. Yet, I am a bit preoccupied during a seizure. But, how on earth do I tell YOU that. You are a skilled neurologist, but, your people skills leave a lot to be desired.
In the future, I will do everything I can to check the clock before and after the seizure. After all, I don't want to disappoint you.
There has to be another way to determine how long a seizure lasts. After all, not everyone with seizures can live with someone or be with someone every moment of a day and night. It just isn't practical!
What are people thinking? Or ARE people thinking? And people say that I am not very responsive.
The doctors tell me that my thought process is messed up after a seizure. But, what about their thought processes? What excuses do they have for being messed up in their thought processes.
"How long did the seizure last?"
Do you have any idea of how ridiculous your question sounds? Have you ever had a seizure before? Are you aware of the time warp I experience during a seizure? ...Seconds last for minutes....minutes seem like hours...
"How long did the seizure last?"
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