April 2016: Flingers Unite!
I am writing this blog coming off of the high from the Chocolate Fling. Hopefully, others will add their thoughts and experiences to our time together.
It was truly astonishing to experience the diversity of the Chocolate Fling. Just about all ages, races, nationalities and conditions of humanity were represented. This is an unbelievable (yet true) achievement in and of itself. So many of our businesses, schools, churches, etcetera, claim to be diverse – though surely a small percentage are – but are hardly able to prove that claim. Epilepsy, as difficult of a condition it is, has brought together those who would not normally cross one another’s path. I would affirm that this is part of the healing process. Furthermore, diversity is far more reflective of the way humanity is.
I also witnessed firsthand that there were times of spontaneity that gave rise to all kinds of quirky responses. For instance, one table was so eager about the sampling of their chocolate that my plate was loaded to the point of rocking from left to right and then of tipping over. A breathless crowd stood by and watched as to whether I would make it to a space I could safely put the chocolate bounty down. I did, just in case you were wondering.
That place happened to be an almost-empty circular stand where “Flingers” could go to and place their plates. My son and I joined two women who had the same idea of simply finding a place to eat - the tables were full at this point. The conversation was casual until, that is, I started to smell a sample of chocolate. What are you doin,’ inquired one of the ladies at the table. I responded, it said it had bacon in it so I’m smellin’ to see if it really does. We all laughed when she replied, I did the same thing! And it did. And it was good.
I was moreover struck by the number of children there were at the Chocolate Fling. This was one of those simply profound moments of life for me. My mind raced as to why they were there. Did they have epilepsy? Did one of their siblings? Or friends? Or family members? Additionally, there were others who talked slower and with noticeable difficulty. There were some who walked only with the assistance of canes or moved slower, yet still moved, with the support of wheelchairs. Am I being prejudice by assuming that they have epilepsy? What about people who look like me? You know, the people who look normal.
Who had epilepsy? Who did not? Does that really matter? What matters is that we were all together on April 24.
And who would have thought that Chocolate is such a fantastic weapon when it comes to fighting epilepsy? This ever-so-slowly winning, yet still winning, fight would not have been conceivable if not for the incalculable commitment of the Epilepsy Foundation of Southeast Tennessee’s staff, as well as the volunteers who make it all happen. Thank you.
February 2016: Are we supported?
Rita has given me the privilege of continuing my role, as a blogger for our Website. I get to share some of my life with you and have found that it is a safe place to share. Once some significant issues in George Choyce’s life, which I will address in a minute, have a chance to be resolved, then I hope to become more active. More later on that.
Those with epilepsy, their families and friends have this transcendent, tight bond that occasionally occurs in other support groups. I know that sounds rather trite. You’ve heard it before. But think about it for a moment at the most basic of levels. There would not be groups like ours unless there were a need for them.
The following is an example that is somewhat pushing the limit, but it is an example of one of the first and best Support Groups that I am aware of. Most of us know the first letter of the alphabet when it is doubled – AA. We can look at it or hear it and say or think, “Oh yeah, Alcoholics Anonymous.” Furthermore, we can think of AA as a good or even a great organization due to the countless lives touched by it.
Proudly, I served at a Church called Calvary in Pittsburgh, Pennsylvania where the larger-than-life priest named Sam Shoemaker served back in the 1950s. He was larger-than-life, because Dr. Shoemaker was the only priest who would allow alcoholics a place to find support. On the other hand and very simply put, I would not be proud if there were a Church where I served that did not welcome and support those of us with epilepsy. While Alcoholism is a disease and Epilepsy a condition, can I say, “My name is George, and I’m an Epileptic.”? Do I feel supported?
How about you? As a person with Epilepsy, have you felt supported? In schools, in places of business, in public, and on and on the list goes. I hope you do. I hope as a society that we have progressed to far more than teasing or mere tolerance.
But let’s be honest, we have a long, long, way to go. For me, shopping sometimes causes anxiety. The fear of being in public and having a seizure is something I replay in my mind. There is a peace, however, that comes when I replay, “Relax, just relax, just relax.” My replay of relaxing helps to a point, but only up to a point. It helps but I have been told, “You look so healthy.” It is the proverbial, “double-edged sword.” I may look healthy BUT my brain is not.
So I’ll end with this that hopefully pulls the beginning of this blog to a conclusion: This is a place of support. Epilepsy, to put it mildly, is a challenging condition that needs support for those of us who have it. Therefore, I am letting you all who are on the same journey that I am on, that I am going for my fourth neurosurgery in February. I will also let you know what happens as soon as I am able to write again.
February 2016: Epilepsy? Or......seizure?
What do people say when you say the word "epilepsy"? What is their statement when you state that you have "seizures"?
This article will be more personal and blog-like than before, so please respond to, as you will, the words, epilepsy, and seizure.
Let's face it - epilepsy is our own word. To be quite frank about it, my epilepsy caused by my supposedly nothing to worry about cavernous malformation has caused a great deal of worry. Well, concern would be a better word here. For instance, Epilepsy has been on medical records now in a neurosurgeon at UAB's, a local neurosurgeon at Erlanger's, plus a neurosurgeon at Vanderbilt's computers since 2009 . Additionally, my name has been on some medical documents of my local neurologist's, as well as a Vanderbilt neurologist's computers. Yes, they are medical professional. Yes, they have seen epilepsy before. Yes, though it does not cause worry, it does cause medical concern.
Here's where this blog gets to be more personal about George Choyce. For example, I talk with a colleague with Lyme Disease once or twice every two weeks. One time I was feeling particularly sorry for myself being all caught in the person-living-with-different-abilities-drama, when finally this incredibly soft, gentle soul blurted out, Well, at least people can see your condition of Epilepsy and your name on your bracelet! He was referring to my fake, silver wrap-around, medical bracelet. At least you have the hope of getting better. Not only do people even believe that I have Lyme Disease, much less that there is there a thing as Lyme Disease, there really is not hope to recover from it.
My pity-party from Tennessee ended right then and right there over the phone to North Carolina. I had not ever, ever, thought of the degree to which my condition affects others - colleagues, family, friends, businesses, volunteer organizations, schools, church and faith prayer groups, etc ... Instead, I thought of my morning (Lamictal) and evening (Depakote) medications, my weekly tonic-clonic seizures (aka Grand Mal), my medical bracelet; as you can read here - my, my, my own. Yes, on one level they are my own. And No; they are not only my own, that is only if I intentionally invite others in on my epilepsy - colleagues, family, friends, businesses, volunteer organizations, schools, church and faith prayer groups, etc ... It's asking for rides, and picking up prescriptions, asking the boss for more time on a work project, being a part of parent/teacher groups, and on and on and on it goes. What is the point here? It is all distilled into sharing the loneliness. And loneliness shared, is not so lonely. Epilepsy can be a lonely journey, that is, if we let it.
Additionally, I wonder if you have ever shared this experience along the journey with epilepsy? For example, when you couple epilepsy to seizure, it is as if you have just surprisingly cussed in a manner that is incredibly offensive to some. For instance, as some of you know, I am an Episcopal Priest. And I began to have seizures when I preached and lead the worship of an Episcopal Church. As an example to how this column gets more personal is via the opportunity I was given to preach and lead a worship service at an Episcopal Church here in Chattanooga. The man who invited me was extremely proud that their church was inviting a disabled clergyperson to take such a full part in his church. And I, as a disabled priest with seizures, was just as proud - if not more so - to be invited and participate. It's just he did not know about the seizures possibility of participation. One of the saddest statements I have ever heard was his honest yet quizzical notion of, I thought you just had epilepsy and not seizures. I never heard back from him.
On the heals of this experience was a conversation I had with a woman who had had similar conversations, though in different settings, like the previous one. She also had the conversation of all conversations when it comes to the coupling of epilepsy and seizures. It was a rather simple, one-sided one with her neurosurgeon in which MRI's and EEG's were shown. Straightforwardly, it was essentially for her to go home and get her affairs in order. He then he gave her around six months to live because the operation to eliminate the seizures was too dangerous. By the way, she still is alive once she found the right neurosurgeon.
Let me end on the last part of our conversation. She said, "You have heard people say, 'Walk a mile in my shoes,' well people with epilepsy and I say, 'Then live a day in my brain.'"
January 2016: The OTHER Valentine
Did you know that there is a Patron Saint for Epilepsy? It's just that he is often mistaken for one of the most popular of all of the Saints.
Valentine is the Patron Saint's of Epilepsy's name. In fact, there are numerous persons with the name Valentine. Just do an internet search on the word "Valentine" and you might be amazed at the forty or so persons with the name Valentine that come up in the search bar. The most common and well-embellished stories about the best-known Valentine is that he performed secret weddings for soldiers and their lovers - since he was a priest in the early church - from his jail cell at a time when weddings for soldiers were forbidden by the emperor. It is for this reason that over the centuries, romantic love evolved. Romantic love was embellished even more and then consequently became associated more and more with Valentine's Day. For example, this is where we get the commercial understanding of Valentine's Day: flowers, cards, jewelry, dolls, chocolates, etc ... that are visible signs of romantic love expressed between two persons.
There was, however, another person named Valentine. This person was specifically known for healing. This was at a time that most persons with Epilepsy were viewed as the recipients of divine punishment; for instance, the person would fall to the ground and shake uncontrollably. In fact for over four thousand years in many cultures, Epilepsy has has been seen as spiritual in nature. Since "that other" Valentine was well-known for healing, it was logical for persons to come to him for healing. You can guess where I am going with this. One of the maladies was Epilepsy, which was later to become known as St. Valentine's malady. Additionally, in Germany the word "fall" or "fallen" phonetically sounds like Valentine. And on and on it goes.
I had my first seizure in 2009 and my condition has not improved even after three surgeries and numerous rounds of anti-seizure medications. I really have had the best that the neurological world has to offer, except for going to the Barrow Clinic, the Mayo Clinic or John's Hopkins. So I step back and ask, "Just what is healing from Epilepsy?" If St. Valentine helped others, then who's to say (or write) that St. Valentine is not healing in our journey with Epilepsy?
December 2015: Our "Saints"
Our Caretakers, Our Friends, Our Families - Our Saints
When we think of the word "Saint," perhaps preconceived visual notions of tattered and torn flowing robes, heavenly-bound eyes, along with firmly clasped of hands of people in prayer comes to mind. Certainly some of the Medieval artwork depicts many of them in that manner. They seem to be otherworldly; we simply cannot relate to them.
This is so unfortunate since we have - at least I hope you do have - some kind of Saint(s) who cares for us in our very worldly situation. Similarly, they are not the sweet and saccharine smiling people who are so often portrayed in the television commercials and magazine advertisements with the line that goes something similar to "Caring for that special someone you love."
If anything, that special someone who cares for us is anything but sweet and saccharine smiling when we have a seizure. They are the tough, earthly, imperfect people who have to make that gut-wrenching decision of whether or not to call 911 at 3 a.m.during your tonic-clonic seizure or seizures, as well as accompany you during any other category of seizure to ensure that you do not get hurt; they wait in the Emergency Room, pacing back and forth, to wait for the E.R. doctor to give you the medical "all clear" and then drive you home; they are the ones who accompany you to the hospital for a much more extended stay when you have neurosurgery; they are the ones who go to the pharmacy to pick up your anti-seizure medications, along with your growing list of medications that often are not working and have hideous side-effects; they are the ones who - and it's your turn to think of what your saint does for you.
Epilepsy is a tough condition. Being a caretaker, friend, or family member of someone who has epilepsy is perhaps even tougher for those who do not wear flowing robes but blue jeans. It's tougher than other-worldly eyes but eyes that are firmly planted on our oh-so-worldly condition. It's tougher than hands clasped in prayer but hands that are clasped so that we do not hurt ourselves during a seizure - a seizure that we are not even going to remember. They are not in beautiful paintings but in plain pictures. Those are my Saints. My Saints have been with me with each and every of these situations. How about yours?
Christmas 2015: Christmas.........."joy"?
It is the time of the Holidays when many of us, for lack of a better expression, turn spiritual compared to other times of the year. For instance, you can see yards beautifully or "tackily" decorated all the way from a star hanging over a Manger Scene, to Santa and his Reindeer, to whatever it is supposed to be that the decorator is desperately trying to portray. Additionally, faux candles flicker in windows, while tiny white and gold lights illuminate bushes and porches. Perhaps you, similar to me as someone with epilepsy, find the spiritual part of the year to be difficult.
Let us explore this issue a little further: For some of us, it is one of our unique burdens as someone with epilepsy. To demonstrate this point, both of my prescriptions read "light sensitivity." Call it mundane if you will, but one of my literal physical pains associated squarely with epilepsy right now is that I am excessively light sensitive. It's hard to be spiritual when you cannot enjoy any of these neighborhood yard displays because lights of all sorts, color, shape, and size bring pain to my eyes. Furthermore, I could not enjoy the Seasonal tradition of the Enchanted Garden of Lights in Rock City. Even my family limits the decorations on the Christmas Tree to just that - decorations. No lights.
The issue, nevertheless, goes far deeper than the measurable and medicinal side-effects from Anti-epileptic prescriptions, as well as epilepsy itself; especially at this time of the year, this issue goes to that spiritual level that is deeply personal. One could even call it our soul. We ask, Why was I born with epilepsy? Why did this happen to me later on in my life? Why are my prescriptions and/or surgeries not working? Why am I weak? Why did I loose my health? You know, I have asked these questions. To be honest, I have cried them too: during a jog, out in the woods, in the back pew of an empty church where one of my friends is a priest, etc... And no answer came to my "whys".
I do, nonetheless, want to give you something of encouragement at this time. There is an alleged prayer scribbled on the floor of a Confederate soldier who was incarcerated in a prison called the Devil's Den in Gettysburg, Pennsylvania. The first four lines have brought me strength and perhaps, just perhaps, will help all of us to be more spiritual at this time and throughout the year to come.
I asked God for strength, that I might achieve.
I was made weak, that I might humbly obey.
I asked for health, that I might do greater things.
I was given infirmity, that I might do better things.
August 2015: Catch 22
This is just one of those days that I suppose all of us experience in varying stages. For instance, I did have a ride to a meeting. Quite unexpectedly and very suddenly, it fell through. An emergency happened to that driver. Has this ever happened to you? Unfortunately, this is a meeting I co-facilitate tonight with another parent out in the Hamilton County Public School System.
This is a "Catch 22" of those who are living with the Disability of Epilepsy (Seizure Disorder). How do we get out to be involved, if not in the workforce, then in the volunteer force? It further removes us from the eyesight of society to when and where we are even less visible. Prior to my first seizure back in 2009, I never, ever would have guessed that approximately one in one hundred has epilepsy. The irony is that I have just had a successful surgery at Vanderbilt called NeuroBlate - it has so far controlled my seizures - yet I have to wait for my Neurosurgeon's "All clear" medical pronouncement in order to drive again. And has this ever happened to you? In other words, I have to continue to wait.
Do you sometimes wonder if you are the only one who experiences my above scenario? Well, now you know you are not going through the side-effects of seizures solo. I have put it in writing so that others know that my experiences are similar, or even the same, as some of your experiences. Believe me that this is not easy for all to read of my day-to-day, in-and-out, life but I hope it is helpful to you on some level.
I just received another text of someone offering me a ride. What a wonderful scenario to encounter. And has this ever happened to you?
July 2015: Chattanooga Fallen Five Shootings
On July 16th, Chattanooga experienced what we never thought would happen. Our relatively quiet city became a part of the National News scene for tragic reasons: Four Marines were killed, the attacker was killed, and one Police Officer was injured. On July 18th, a Navy Petty Officer died from his injuries. At the time of this writing, there may be more who were injured but I do not wish to give inaccurate information.
This stuff just doesn't happen here in Chattanooga, is what I heard over and over by shocked citizens. Neighbors looked at me just shaking their heads in disbelief as accurate reports evolved from the confusing reports coming in from on-the-ground reporters to their colleagues in the newsroom and up in front of the camera. Other reports came in via the radio and Internet. This was all taking place in supposedly innocuous areas of Suburban Chattanooga, by the way. As pictures came through to the television stations, I realized that I have driven by both Military Recruiting Stations on almost a daily basis while transporting two of my children to school.
I felt so many emotions throughout this terrible event. The one I wish to focus in on now is the atypical feeling of helplessness that this person who has been living with Epilepsy sustained. So like many of you, I just want to DO SOMETHING! when I feel helpless. It helps to relieve my internal tension, as well as a cruel beat myself up attitude for not doing more. So when the official call went out from Blood Assurance of a need for additional blood on the actual day and within hours of the shootings, my son and I went on down to literally roll up our sleeves and do our part. We heard the request at 1:30. After getting a healthy snack and water at home, we left at 2:45 and arrived at 3 at Blood Assured. We signed in almost immediately and were called by 4, that is, if we were willing to go out to the Blood Assurance Bus in the Parking Lot. No problem.
Epilepsy or not, I had to accept the reality that I am a person who likes to accomplish something and help people out. The scene at Blood Assurance was one of a paradoxical quiet dignity and nervous excitement as all sorts of people, from business suits to multicolored hair, lined up to donate. This was it, I thought to myself. I further thought to myself, I can give. I can give my blood. How profound is that.
I quickly went through all of the routine information gathering process by pressing the appropriate YES or NO button at the high tech computer screen. I am not exactly sure how the final questions evolved but one of them was regarding epilepsy and seizures. As previously written was the exuberant idea that, Epilepsy or not, I can donate my blood or so I thought. All of a sudden, the very professional and kind medical person was rifling through medical manuals. She then asked, Well you haven't had any seizures in the past three months, have you? This was a loaded question. Again I must add, that the hurried query was coming from a professional and kind medical person. I knew right then and there that I was not going to be able to give blood. I was not angry; I felt a deep sadness. I think she did too.
I want to put it in writing that I think Blood Assurance is an extremely professional organization. They lost no kindness or courage under this highly stressful situation. Their staff is not only talented and thoroughly medically trained, they also possess great kindness; kindness is something that cannot be taught. The donor (me) was never made to feel second-rate. I think that both of us were not expecting for a relatively healthy-looking person to have the Medical Condition of Epilepsy that would prohibit him from donating blood, until the seizures were under control for three months or more.
Nothing has worked to control these twice-a-month nocturnal seizures: rounds of anti-seizure meds, as well as two operations. I am going to Vanderbilt now as my last hope for seizure control. I did not expect blood donation to be affected by seizures. Now I know the facts. Now I know my feelings.
It might be helpful for you who are reading this reflection to be vulnerable yourself. Please share any similar experiences with Epilepsy that have stopped you from doing some activities that you have been able to do in the past. Also, share how you have been able to overcome the obstacles you first encountered.
July 2015: Upcoming Neurosurgery
I have been away while the technical portions of the Newsletter recently received some updating. It was a privilege and a pleasure to be asked back to write for the Monthly Newsletter. I have found that planned-out writing is a more positive way for me to stimulate my brain instead of the pressure of on-the-spot thinking, although there is certainly value in that method of a brain workout.
I could write, much has been happening in my life since my last article, thoughthat would be at the very least a token means of communication. It would, however, be curious for you – at least I hope it will - to read about my upcoming Neurosurgery. Yes, I will be having another operating - it is called Deep Brain Stimulation. “Googling” it would be far more accurate visually, as well as medically than my patient-wise health description of the operation.
The better way for me to address this medical matter is to describe more of the process I have been through so far as I try to bring my seizures under some type of control. This idea of control, of course, may be an entire delusion on my behalf. Surely many of you have been through this complex issue of bringing seizures under control through anti-seizure medication, in addition to surgery.
At this point in my trying journey with epilepsy, I have been through seven rounds of medication. The frustration of side effects cannot even be conveyed through words; facial expressions are crucial to communication. Even my Neurologist knows my emotional frustration with my prescription. At this point in my six years of suffering with seizures, my Neurologist and I have found a medication that works. The issue, nevertheless, is that the side effects continue. He and my Neurosurgeon have met in a clinical setting and believe surgery is my best option.
I have had surgery twice before – at UAB with Cyberknife and at Erlanger with a full resection at the bottom of my Left Frontal Lobe. This time, however, I am going to Vanderbilt on August 14 for the Deep Brain Stimulation surgery. Certainly, I am excited about it. Certainly, I am realistic about it. Please think about me on that day and you will read about the outcome within the month.
October 2014: Travel and Teachable Moments
Going on a trip with epilepsy can be, to say (or write) the least, challenging. Have you found this to be true? Recently, while I was on a trip down to New Orleans to assist in the further recovery effort from the levy break after Hurricane Katrina, the challenges of remaining seizure-free were massive. For instance, just the Interstate itself was a nuisance with all of the road construction. Do you know the nuisances to which I am referring? Blinking lights. They came in all shapes and sizes and colors. There were the slow, hypnotic, flashing orange lights on sawhorses. Moreover, there were the handheld, intermittent yellow sticks of light that construction workers waved up and down to direct traffic. In addition to this, there were intense, circling blue lights on top of, and in the front of, police cars.
We know that blinking lights can be a catalyst to seizures but do our traveling companions? This is what I have heard referred to as a “teachable moment”. It is one of those times when we can explain to our family and/or friends more about epilepsy. Have you thought about these times in the manner of a “teachable moment”? At least for me, I have found that this is a way to do some instruction in a world that knows so very little about seizures.
Something else that presented itself in a fairly serendipitous style was when my cell phone alarm went off at 8:30 one night. Everyone looked at it out of curiosity. At the same time, I pulled a pill bottle from my pants’ pocket, unscrewed the top, and washed down an AED with water. They all inquired, What was that? Have you ever had the experience of having to take your seizure meds in front of others? I frequently have to, so it does not bother me at all. It is again another moment for us to share about epilepsy.
What other activities act as a catalyst to seizures? I found that working too hard in the heat could bring on seizures. To my embarrassment, I could not work as long and as hard as other group members on the repair of a house. Ladders were out of the question. But it all can lead up to teaching more about epilepsy. How about you? What can you do, not only in traveling, but in the day-to-day activities that could help others to understand epilepsy better?
August 2014: Robin Williams
How did Robin Williams’ death affect you?
I am writing this article the week of his death and do not know the timing of when you will be reading it. Timing is an important component in where you are in the process of grief. At this point, has your grief, for the most part, passed? At this point, do you wish people would just stop talking and/or writing about it? At this point, do you grieve at all? All of these are significant questions since they deal with multilayered issues comprising physical, emotional, and perhaps even spiritual components of grief.
For me Robin Williams’ suicide was a multifaceted issue. The physical part of the matter comes from my increasing understanding of the brain. My continued comprehension of how the brain and epilepsy are related makes me have more appreciation that suicide, as it relates to clinical depression, is a physiological condition at the very least and not solely an emotional one. Williams’ suffered from clinical depression, addiction, and the beginning of Parkinson’s disease, all of which are brain-related. Does it help you to know that suicide is a neurological condition, as is your epilepsy?
The emotional issues associated with Robin Williams’ death would take books to adequately address in a way that would do the man and his life any justice at all. I have discovered an abundance of tributes throughout this week. Did you see them on cable or hear them on your stereo? Jimmy Fallon’s tribute came close to justice, and he was humble enough to admit that he fell far short of a fitting tribute. Did you see it? If not (and I hope you will) it is still available on YouTube.
In addition to this, Robin Williams’ suicide brought home to me the significance of neurological conditions. There is help out there for people like us – people with epilepsy. If you are like me, your epilepsy has probably overwhelmed you at times. This is normal, however, when living with epilepsy becomes more than sadness there is free profession help. 1-800-273-8255 (talk) is the most common number I have found on any neurological website. Additionally, on the local level of our website (epilepsy-setn.org), there is a link that is a part of the “ABOUT US” heading that reads “Support Group”. Click on that link and the first thing you will read is “Knowing that you are not alone is very helpful when dealing with seizure activity.” The rest of the information is available on that picture-filled page.
The spiritual part of the issue of suicide or even seizures, for that matter, is deep and complex. It too cannot be addressed adequately in this article. I do, however, leave you with these questions: Have you thought about whether or not there is a connection between the physical, emotional and the spiritual? Do you have a faith community where you have found comfort? Do you have a place to go to talk about such matters?
Whatever are your experiences, you are not alone. The Epilepsy Foundation of Southeast Tennessee is here for you and can get you the help that you need. And to that, I conclude with “Amen.”
June 2013: What Are You Lookin' At?
If you can visit New York City, make it a priority to go at least once in your lifetime. For me the “Big Apple” is not really a restful vacation as much as it is an intense experience that cannot but help to break up my daily routine. What a routine-breaker it is! Here is but one example: My day to day routine is to ride around the Chattanooga area at my own convenience, while driving my own car. Those of you who have lost your driving privilege due to seizures know just how significant and even enjoyable the restoration of a Driver’s License can be. Since my seizures are under control for now, I find simple pleasure in driving from Point A to Point B.
New York City, however, is all about riding the Subway, uncomfortably crammed in with complete strangers who sway as one to the mechanical rhythmical combination of both the thrust of the engine and the turning of steel wheels moving on down the railroad track. When the Subway cars stop, passengers hastily disembark one by one, off the train, onto the station platform. From that vantage point, they walk, and walk, and walk everywhere. In my opinion, it is not a journey – both literally and figuratively - for the fainthearted, even for those who live without epilepsy.
As someone living with epilepsy, one of my significantly challenging experiences on my New York City trip was found on 42nd Street. My family and I took the Red Line 2/3 train to the Times Square station. Times Square is one of those places that live up to the “City that Never Sleeps” slogan. Families with young children, suit-wearing business men and women from out of town, tourists and locals all intermingled on sidewalks and in restaurants in a feeble attempt to take in what is too much to take in. For instance, Times Square is a glitz and glamour bombardment to the extreme for the senses. Flashing lights pop up and down in monotonous patterns from billboards, casting unnatural illumination into the night. For me, the lightshow threw off my entire sense of time and space. What’s more, and those of us with epilepsy will appreciate this, my medication exacerbates the condition of light sensitivity. Perhaps you have experienced that burning sensation in your eyes and the beginning of a dull headache due to photosensitivity.
Now as someone who lives with the unvarying risk of seizures, you can imagine then the difficultly of having to simply endure the flashing, spinning, “disco ball” types of popping illumination. There was no, absolutely no, respite from this relentless onslaught from unwanted and uncontrollable stimulus. I think only those of us living with epilepsy would understand what I am writing about. You are very blessed if your family and friends know of your plight. From my point of view, it is important that other know what we epileptics go through on a day-to-day basis, as well as during the out-of-the-ordinary times; Times Square, for example.
My family undoubtedly knew that my discomfort was rising at an distressing rate. When I put on my “Roy Orbison” glasses at 10:30 at night, they got my visible hint that it was time to wrap things up and simply leave the famous attraction. They cut short their immensely enjoyable time at Times Square just to get me back to the paradoxical “peace and quiet” of the Subway. As someone living with epilepsy, perhaps you have experienced something similar: an uncomfortable situation that can trigger a seizure buffered by the loving support of family and good friends.
In addition to Times Square, one of the highlights of the New York City trip was Broadway. My spouse was dogged in her attempt to get Phantom of the Opera tickets. We were rewarded and became the beneficiaries of her willful determination. In fact, we were in the second row of the historic Majestic Theatre. From this vantage point, I could see all of the actors’ faces with their vivid expressions that never once waned in fervor during the musical. It is not surprising that the Phantom’s scarred, realistic facial appearance nonverbally told the mad and sad story of his separation from other people.
My intense perspective of this event was that I was flooded with powerful, virtually uncontrolled emotions ranging from pity to anger about the Phantom’s plight, which is not unlike our own. I reflected on our separation as epileptics from others when we face discrimination at work or in school. I considered too our separation from others even on vacation because we cannot be “normal” however “normal” we are in appearance. We still cannot partake of what so many others enjoy with seemingly effortless ease, like watching Phantom of the Opera, for example. In my honest opinion, I was jealous.
By the way, I still had to wear my dark glasses inside of the dimly lit Majestic Theatre. When I got strange and scornful looks from strangers concerning my appearance, I wanted so badly to lash out and use that famous New York City line, “What are you lookin’ at?” Perhaps one day, the stares will not bother me as much as they still do today. Perhaps one day, I will have reached the point I can use another famous New York City expression – “fugetaboutit.” But I have a long way to go on my epilepsy journey before I get to that point.
About the 2013 Chocolate Fling in April
It happened at the “Chocolate Fling.” It happened for me as a moving emotional, perhaps mystical moment. It came about in this way: I was standing about 25 yards from the quartet while they were playing “Wonderful Tonight” by Eric Clapton. This, in and of itself, was a serendipitous phenomenon as I watched and listened to classical instruments, being played by classically-trained musicians, who were performing the classic rock that I grew up listening to as a teenager.
At this exact time that bows met strings, there was a wonderful and respectful buzz of conversation emanating from those seated at the tables, as well as those who were standing. Needless to say, the discussions were often muffled as the good-natured words were filtered through mouthfuls of mouth-watering chocolate. The banter blended with the notes, forming our own symphony of sorts. From where I stood, I experienced a sudden epiphany. From my perspective, we had become a part of something bigger than ourselves. In short, it was a powerful experience to me.
Though I felt my notes are off-key since the hemorrhage of my cavernous malformation, the accompanying surgery, and the continuation of a daily dose of 400mg of lamotrigine, I still had a part to play in the concert. Perhaps feeling off-key is common to us who are epileptic, but it is not unique to us. It would be intriguing to know if you have ever felt this way. Have you? If you have felt this way, then listen, really listen, to Mother Teresa’s words as you take this moment to read the following quote:
We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop.
At this point in the “Chocolate Fling,” I continued to gaze at the faces of the members of the quartet. They were enjoying themselves as they offered their gift of music to us. Their delight was subconsciously and consciously contagious. And we unintentionally or intentionally were positively influenced by their notes and joined in with the music, even if some of us felt off-key. This is how I experienced the “Chocolate Fling.”
While listening to the music, I observed, in a Sherlock Holmes’ manner, the details of the event, including the amusing stains of chocolate-smudged faces. In addition to this levity, I observed the undeniable fact that there were participants who had epilepsy. There were probably plenty of people like me who had epilepsy but it was just not that apparent. All of the people gathered were in some way, shape or form participating in the endeavor of the Epilepsy Foundation of Southeast Tennessee’s mantra – “Not another moment lost to seizures.”
This massive fundraising event could not have happened without the behind the scenes, as well as the upfront, work of so many unsung and sometimes unseen people. Perhaps they felt like drops in the ocean. I saw Mickey McCamish, as well as Rita Fielding greeting the participants and walking around to ensure that the “Chocolate Fling” was going smoothly. Also in attendance was the Board of Directors comprised of the Executive Members and Members, though I do not know them well. Finally, there were Southeast Tennessee Epilepsy Foundation volunteers who were engaged in conversations with those who attended, as well doing the “dirty work” of breaking down tables and cleaning up the trash.
The notes, silent or noisy, on or off-key, of the Epilepsy Foundation of Southeast Tennessee’s “Chocolate Fling” could be heard in places we may not know about for now. Those notes, however, are the drops in the ocean of a commanding concert to combat epilepsy. Just think of the nearly three million drops of those of us who have epilepsy. Think of those whose lives we touch and the way their lives touch us. Just think how big the ocean becomes because of the notes, silent or noisy, on or off-key, that we bring to the concert. Keep on playing the tune of “not another moment lost to seizures.”
April 2013: The List
There is an intriguing, lengthy list of people with epilepsy when one simply “googles” the subject line “famous people with epilepsy.” This directory’s span of characters contains artists, musicians, politicians, athletes and religious figures – they are all there. Here are three of my favorites: St. Paul some theorize had epilepsy as his “thorn in the flesh.” Lindsey Buckingham, the lead guitar player of one of my favorite bands, Fleetwood Mac, has epilepsy. Alan Faneca, former offensive lineman from my favorite football team, the Pittsburgh Steelers, also has epilepsy. I urge you to research this list for yourself to see who is on it. You might even say out loud, “I had no idea she (or he) had epilepsy.” Personally, I draw both strength and solace from the famous people who share our condition.
Do you have a list of not-so-famous people, epileptic or not, who have made a difference in your life? I do. My not-so-famous list of “stars” starts with my spouse, Anne and our four children and from there goes on to Bob, Melissa, Patti, Connor, Kathy, Richard, Carter, as well as many others who are too numerous to print in this article. As an aside to my not-so-famous list, my daughter, Kelly is not only passionate about her service to the Epilepsy Foundation; she has also made her Senior Project for high school into a presentation about epilepsy.
My list is comprised of people whom you probably do not know. They are just ordinary folks who do something extraordinary but are too humble to even recognize that I am writing about them. They probably do not think what they have done matters that much, but I wanted to put it in writing that their small acts of kindness have been a huge influence upon me. Here is what they have done for me – they are not afraid of my epilepsy. As a result, they are not afraid of me.
In my experience, epilepsy is not only an intimidating word; those of us who have epilepsy are sometimes treated as if we are unapproachable. Are we outcasts because we might, God forbid, succumb to a scary seizure in public? I would be fascinated to know about your experiences concerning the implications of this wide-ranging phenomenon of fear. Did you react negatively to the fear in others or did you use it as a positive opportunity to bring about a change in perception? Whether or not we like it, fear is a powerful and harmful influence. I am reminded of the words of Hermione Granger of Harry Potter fame, “Fear of a name only increases fear of the thing itself.” She was talking here of Lord Voldemort but I think you get my point. I would go as far as to write that the word “epilepsy” is taboo.
It is my opinion and also my hope that the stigma of seizures might be diminished by the recent publicity of some famous people who have epilepsy. Perhaps publicity will even reduce fear. The reality of our society is that celebrities get more information out to the public about epilepsy than we do. Even bad press is good for getting out the word epilepsy. For instance, I recently finished reading an article about the seizures Kelly Osbourne had on the set of E!s “Fashion Police.” At the end of the internet article, there was a place for comments. Regardless of how you feel about Kelly Osbourne or even her family of origin, the comments were extremely revealing about prejudice and ignorance. Even more recently, Lil Wayne was viciously and similarly attacked in the comments’ section of other related internet articles.
It was as if some of the readers thought that these two famous persons deserved to have seizures due to their “lifestyle.” Almost all of the feedback descended to the base level personal assault. It was the rare comment that even employed the word seizure or epilepsy; and in that case the anonymous commenter would almost always mention the words “drug use” or “tattoo ink” in the same sentence.
Are these condescending and cowardly comments a microcosm of what you and I have experienced? Epilepsy is an equal opportunity offender, not differentiating between celebrity and ordinary. Is it so subtly and psychologically ingrained into our culture to attack those who have a seizure, celebrity or not, instead of acknowledging the scary word seizure itself? Though we are not celebrities, perhaps if you and I become more public about our epilepsy, then the phobia associated with the “E” word (epilepsy) would be diminished. Though I am not a celebrity, I think I can make a difference. How about you? How can you make a difference? How are we going to be more public? Is there a list for people like you and me?