It was absolutely amazing to learn in my surgeons office yesterday that I have two holes in my head! Please laugh because it is a little bit funny! Think of all of the fun that I can have with this one..."I need this like I need a hole in my head" and so on. I mean, really, the possibilities are endless.
In case anyone is confused, I will bring you up to speed. I started this blog in November of 2010 when I started to have seizures and learned that I had Epilepsy. At the time, I thought that a blog would be a masterful way for me to journal and out let and maybe reach a person or two and then I learned that I had a rare tumor called an Acoustic Neuroma on the left side of my brain. I abandoned the blog because truthfully, something in my life had to give. At first I was handling the news pretty good but when I started meeting with neurosurgeons and learning the details and severity of what I was facing, I decided that this was going to be a very personal and private healing journey. I had a craniotomy to remove the tumor on February 1, 2011 and I am healing beautifully. I should probably mention that it is perfectly normal and a part of the surgery that I did not know about to leave what they refer to as "window holes" in your cranium around the major bone incision that is sealed back up nicely with titanium. I just did not want to alarm anyone.
So...I am back! And I would like to say better than before even though I may be missing some of my cranium but who needs it? It will grow back as it needs too, however it needs too. And that is just it! That is the biggest thing that I have learned in all of this. Just allowing the body. Allowing it to heal. Allowing it to sleep. A lot. Allowing the emotions to come up so that they can go out. And boy oh boy did they come up. Talk about powerlessness of the body. Have a craniotomy. Actually, I really do not recommend it.
The girl that is always going going going. Not so much anymore. After the surgery I was walking with a walker. Yep. It's true. And yesterday I had to listen to my surgeon tell me that I won't be able to even think about doing yoga or walking fast or allowing any blood flow to my head for at least two more months! But I was happy that he said that it is perfectly normal that I have to take a little nap after I take a shower. I was really starting to get worried there! So, for now, I am like that sweet little inch worm. I added the sweet. One inch at a time. And for now, I can blog. And maybe, just maybe, while the holes in my head grow together and the days become longer and my naps become shorter, one of us can get something out of this.
Tuesday, April 12, 2011
Tuesday, November 30, 2010
Struck by Lightening
Not literally. But it did all begin with a spark. Now be patient and we will get to the good stuff. I just got off of the phone with a friend and she gave me the very short version of how her solo business venture that we have been discussing for, let's say, at least two years, began.And it all began with a spark. Her spark was her employer at the time telling her that she was totally incompetent. Wow. Thank you employer at the time because that was just the catalyst that she needed. At first I thought to myself "what a meanie!" but after getting off of the phone and being all happy for her, my perspective changed and I thanked that employer. She just needed a little electricity!
So this really has me thinking now and I would like to share an experience or maybe more, we shall see. After my first big seizure, I was out of work for a bit(Doctor's orders, as you can imagine)and when I returned to my place of employment, I found that I had been replaced. Now, there had been some very boring history involved and to sum it up, the GM and I were like oh, let's say, extremely immature lion cubs battling for power and control of the dessert menu. We were not friendly. At all. I have to get a good belly laugh in over it now. It feels so insignificant but at the time I felt like it was so important as though a title defined who I was or the next write up would fill up something inside of myself or tear me down. To be perfectly honest, I had been failing miserably at that job. I hated it there. It was terribly hot and my health was starting to become bad which makes it hard to work so I really needed to go so this GM made it possible for that. He gave me electricity! Thank you Mr. GM and whenever I think of you from now on I promise to think good thoughts. Promise.
People give us electricity all of the time only we don't see it that way. The person in line at the Grocery who has the big fat frown on their face. The Boss that is such a jerk. How do you respond to them? Do you think "my God, I do not want to be like them!" or do you send them a little bit of love? Take all of that anger and let it be your catalyst. They remind us to do something different. Change. Get outside of ourselves. Live a little. Get out of the bs that goes on inside of our own heads. I just do not trust it anymore and I am open to suggestions.
Travel magazines rock, by the way. I love them. They are very calming and when my brain needs a break from reading these days, I like to look at the pictures of beautiful places. These magazines also have advertisements for very nice retirement places for the older crowds and boy, did I get some electricity there. I figure, if I am lucky, I have about a good 45-50ish years to really live out loud once all of this brain business is cleared up and straightened out so I am working on the list folks! When I was down in Florida, I made a Bucket list with my nine year old nephew and I must say, his was very impressive! He is ready for Paris so once we work out the details we are off! But before that, I am just getting ready to really truly do it up in style. I do not know what this means yet or how it is all going to transpire but I do feel as though I have, in a way, been struck by lightening.
So this really has me thinking now and I would like to share an experience or maybe more, we shall see. After my first big seizure, I was out of work for a bit(Doctor's orders, as you can imagine)and when I returned to my place of employment, I found that I had been replaced. Now, there had been some very boring history involved and to sum it up, the GM and I were like oh, let's say, extremely immature lion cubs battling for power and control of the dessert menu. We were not friendly. At all. I have to get a good belly laugh in over it now. It feels so insignificant but at the time I felt like it was so important as though a title defined who I was or the next write up would fill up something inside of myself or tear me down. To be perfectly honest, I had been failing miserably at that job. I hated it there. It was terribly hot and my health was starting to become bad which makes it hard to work so I really needed to go so this GM made it possible for that. He gave me electricity! Thank you Mr. GM and whenever I think of you from now on I promise to think good thoughts. Promise.
People give us electricity all of the time only we don't see it that way. The person in line at the Grocery who has the big fat frown on their face. The Boss that is such a jerk. How do you respond to them? Do you think "my God, I do not want to be like them!" or do you send them a little bit of love? Take all of that anger and let it be your catalyst. They remind us to do something different. Change. Get outside of ourselves. Live a little. Get out of the bs that goes on inside of our own heads. I just do not trust it anymore and I am open to suggestions.
Travel magazines rock, by the way. I love them. They are very calming and when my brain needs a break from reading these days, I like to look at the pictures of beautiful places. These magazines also have advertisements for very nice retirement places for the older crowds and boy, did I get some electricity there. I figure, if I am lucky, I have about a good 45-50ish years to really live out loud once all of this brain business is cleared up and straightened out so I am working on the list folks! When I was down in Florida, I made a Bucket list with my nine year old nephew and I must say, his was very impressive! He is ready for Paris so once we work out the details we are off! But before that, I am just getting ready to really truly do it up in style. I do not know what this means yet or how it is all going to transpire but I do feel as though I have, in a way, been struck by lightening.
Saturday, November 13, 2010
Calm Down Kanye
Please Sir, Calm Down. I mean, really here, did anyone else see that HILARIOUS interview that he recently did with Matt L(I forget his last name but you know the dude). So funny! I am not taking a stand here against or for anyone or making any type of political statement, all I am saying is Kanye...GET OVER YOURSELF! HA! I watched the interview on the web and was falling out of my chair laughing because his ego is so out of control that I completely missed the seriousness of the subject matter.
I have had some time to think about the interview since and wonder when, how and why oh why do we hold these so called celebrities in America and abroad in such high regard. In ancient times people sought out the Crone or the Medicine man, the old wise ones for their wisdom and experience. They had wrinkles and were imperfect and may have seemed at times a little bit crazy but they were held in high regard in their community. Now we look to the women and men who surgically alter their bodies, starve themselves, and mostly pretend to be someone or something that they are not for the latest trend etc. Now...don't get me wrong...I LOVE Sex and the City purely for the wardrobe but I look to the Wise Ones for what I truly need in life which is a lot of guidance. Apparently I did not get the users manual. Some people seem to have gotten that one. I did not. I don't think Kanye did either. So...we all get to learn together. Which, as far as I can tell, is a beautiful thing, if we allow it to be. I am not trying to be hard on the man, I know that we all have a part in it, and I do know his past and his amazing rise to fame and I truly admired him for the things that he has overcome but he lost me by his recent displays. Not to worry, I will return because I will realize that he, like me, is just being human and doing the human thing. But people please wake up! Hollywood and the people that are PRETENDING and PERFORMING all of the time should not be the ones that we look too. Think about it. Just think about it.
I have had some time to think about the interview since and wonder when, how and why oh why do we hold these so called celebrities in America and abroad in such high regard. In ancient times people sought out the Crone or the Medicine man, the old wise ones for their wisdom and experience. They had wrinkles and were imperfect and may have seemed at times a little bit crazy but they were held in high regard in their community. Now we look to the women and men who surgically alter their bodies, starve themselves, and mostly pretend to be someone or something that they are not for the latest trend etc. Now...don't get me wrong...I LOVE Sex and the City purely for the wardrobe but I look to the Wise Ones for what I truly need in life which is a lot of guidance. Apparently I did not get the users manual. Some people seem to have gotten that one. I did not. I don't think Kanye did either. So...we all get to learn together. Which, as far as I can tell, is a beautiful thing, if we allow it to be. I am not trying to be hard on the man, I know that we all have a part in it, and I do know his past and his amazing rise to fame and I truly admired him for the things that he has overcome but he lost me by his recent displays. Not to worry, I will return because I will realize that he, like me, is just being human and doing the human thing. But people please wake up! Hollywood and the people that are PRETENDING and PERFORMING all of the time should not be the ones that we look too. Think about it. Just think about it.
Friday, November 5, 2010
The Business of Talking
I love to talk. I always have. Mostly because I love to hear the brilliance that comes out of my mouth at times. Truly. I mean, it just amazes me! I have spent hours upon hours solving the problems of the world or the problems of the moment which usually transpire as a crying girlfriend and traditionally there is a man(or woman)involved. The spoken word delights me and to hold an audience captive with the sound that is produced from the voice box of my body is such happiness! And then it all came crashing down last night when I realized that I do not and never have had an original thought in my life! Should there be some commas in there or something? Maybe I should take an online grammar and punctuation course while I have all of this down time!lol. So...where does it all come from and how does it all work? Have I heard it all before or is there some big cosmic center that we are all downloading information from as some of the new agers believe? There are many many theories but the one that I am going with today is that I truly do not have an original thought. Why this is important-who knows. Who cares. Will I ever know? Maybe. Maybe not. Will I become brilliant again? I sure hope so!
I have been researching the brain at great lengths, trying to get down to the nitty gritty of Temporal Lobe Epilepsy and have happened upon the most marvelous book Seized by Eve LaPlante. Thank you Eve, if I may be so informal, for writing such a miraculous study into such a misunderstood phenomenon. If anyone reading this is in anyway touched by TLE please read this book! It has been the BEST resource that I have been able to get my hands on. I have always stood by the ideal that we are spiritual beings and I still do but it turns out that I really neglected the brain. It is quite fascinating! But now that the electrical impulses in my brain are not conforming to the traditional patterns, I am very interested. I never could have imagined that in such a short period of my life I would be told that due to the lack of cooperation of my brain that I cannot drive, cannot do any activities unsupervised(this includes walking up and down the stairs), cannot work for a while, cannot swim, cannot take a bath, may not be able to reproduce(stay with me here folks....there is an upside!), cannot fly and by the way....there is a non related non-cancerous tumor on the opposite side of your brain that needs to be looked at by the neurosurgeon. huh. Now folks....those of you who know me as of late know that I am the girl who does the yoga, grows wheat grass(which is disgusting by the way!)in her apartment, juices, fasts, runs, meditates, laughs, cries, dances, eats organically, buys locally, hormone free, consumes very little if no meat, eats sprouts....YOU NAME IT!!!!!!! I do not drink soda, I do not eat fast food or any of that crap that you are supposed to avoid so why why why?
Well....I guess that the why is really not that important is it? I mean, I could spend the rest of my day or the rest of my life, if I choose, asking why but...why would I? I don't regret a minute that I spent washing all of that organic produce and juicing it because it sure tasted good going down and as soon as I am well enough to eat again I am going to grill up a big juicy local Angus burger(Jennie-you can come over for that!)because that is my style. Who the hell knows why. Maybe this is all a big part of some Karmic lesson. Maybe it just happened. Maybe I am supposed to get off of my ass and actually help someone and this is my big turning point. We shall see. I am not making any promises here folks. We shall see. Do I hate it that this is all happening? Of course I do. Why wouldn't I? Am I going to get over it? You betcha. People in my life have overcome much greater things than this. Overcome. Interesting word. The definition can be something along the lines of....to get the better of in struggle or conflict. That is not my style. Am I struggling right now. Hell yes! But that is all part of the process and part of the humanness. But paleeze no more conflict! Yuck. Thanks for hanging with me today peeps!
I have been researching the brain at great lengths, trying to get down to the nitty gritty of Temporal Lobe Epilepsy and have happened upon the most marvelous book Seized by Eve LaPlante. Thank you Eve, if I may be so informal, for writing such a miraculous study into such a misunderstood phenomenon. If anyone reading this is in anyway touched by TLE please read this book! It has been the BEST resource that I have been able to get my hands on. I have always stood by the ideal that we are spiritual beings and I still do but it turns out that I really neglected the brain. It is quite fascinating! But now that the electrical impulses in my brain are not conforming to the traditional patterns, I am very interested. I never could have imagined that in such a short period of my life I would be told that due to the lack of cooperation of my brain that I cannot drive, cannot do any activities unsupervised(this includes walking up and down the stairs), cannot work for a while, cannot swim, cannot take a bath, may not be able to reproduce(stay with me here folks....there is an upside!), cannot fly and by the way....there is a non related non-cancerous tumor on the opposite side of your brain that needs to be looked at by the neurosurgeon. huh. Now folks....those of you who know me as of late know that I am the girl who does the yoga, grows wheat grass(which is disgusting by the way!)in her apartment, juices, fasts, runs, meditates, laughs, cries, dances, eats organically, buys locally, hormone free, consumes very little if no meat, eats sprouts....YOU NAME IT!!!!!!! I do not drink soda, I do not eat fast food or any of that crap that you are supposed to avoid so why why why?
Well....I guess that the why is really not that important is it? I mean, I could spend the rest of my day or the rest of my life, if I choose, asking why but...why would I? I don't regret a minute that I spent washing all of that organic produce and juicing it because it sure tasted good going down and as soon as I am well enough to eat again I am going to grill up a big juicy local Angus burger(Jennie-you can come over for that!)because that is my style. Who the hell knows why. Maybe this is all a big part of some Karmic lesson. Maybe it just happened. Maybe I am supposed to get off of my ass and actually help someone and this is my big turning point. We shall see. I am not making any promises here folks. We shall see. Do I hate it that this is all happening? Of course I do. Why wouldn't I? Am I going to get over it? You betcha. People in my life have overcome much greater things than this. Overcome. Interesting word. The definition can be something along the lines of....to get the better of in struggle or conflict. That is not my style. Am I struggling right now. Hell yes! But that is all part of the process and part of the humanness. But paleeze no more conflict! Yuck. Thanks for hanging with me today peeps!
Wednesday, November 3, 2010
Now or Later
So casually we hold ourselves from the things, people and places of today because we believe so strongly that we will have a chance at experiencing them tomorrow. Hmmm. Really. Maybe it deserves a question mark but I am not sure. I have been the biggest offender of this. I am a list maker. I love to make lists. I have the constant running three part list of what I hope to get done today and then all of the things of today get moved to the middle section which is tomorrow and then by the end of the day they are moved towards the third part of the list which tends to be the latter part of the week. Thank you run on sentence. People ask me all of the time if I am a teacher or tell me that I should be but they never get to witness my lack of desire to follow the rules that some person set in regards to the structure of sentences. Anyhow....lists are soooo boring! I am over them! And when did I become this person that believed that she had to get things done all of the time? I used to tell people that we are not human doings we are human beings and then I tricked myself!
Back to the original subject that I thought about a lot last night but was unable to write about due to some very normal side effects of the anti seizure drugs(insomnia, nausea, vomiting...the usual)Now or Later. I do believe that some people truly get it that life is precious and that they live each day like it is their last and while I have a deep gratitude and an appreciation for the awesomeness of this experience here on Earth, I don't think I realized that it truly could all be gone in a flash. No....not morbid. Truth. Time for me to stand in that truth and face it and have a nice little party with myself. Because this is it folks. What are we waiting for? Life is not something to schlep through. Life is not something to dread or hold on to the crap that(trust me, it is all about perspective. If what I am about to say offends you, give me a call, I can share some experience with you and we can have a glorious talk, promise)happened to you....life is happening right now. We all have our own unique process. I will always stand by this. What is it going to be? Now or later? I just don't think that I can trust in later anymore.
As a person who lost her Mother at a very young age(she was 28 years old, I was 4 years old) I do believe that I have always experienced a fierceness for life. A sort of hunger or inner knowing that I could never articulate but knew that it was there. I have always been a seeker and lived in a way that was expedia. I have moved around and always been on the go. People have legendarily told me to slow down but an inner burning has always told me to see more, smell more, taste more, touch more, more, more, more. I have always felt as though I looked at the world differently(and now have found that most people with TLE do!)and I knew that it was important way before it ever became important to experience this experience. Yes, I have lived recklessly at times and been irresponsible and caused worry and harm in the lives of those who love me. The good news is that I get to be here today and try to do the best that I can in each moment. Now.
And again....I choose now because there really may not be a later and I just have to be okay with that. With what ever may or may not come. I feel as though I am starting to sound like those new age self help books that I hate so much. yuck. But for now, I will just roll with it.
Back to the original subject that I thought about a lot last night but was unable to write about due to some very normal side effects of the anti seizure drugs(insomnia, nausea, vomiting...the usual)Now or Later. I do believe that some people truly get it that life is precious and that they live each day like it is their last and while I have a deep gratitude and an appreciation for the awesomeness of this experience here on Earth, I don't think I realized that it truly could all be gone in a flash. No....not morbid. Truth. Time for me to stand in that truth and face it and have a nice little party with myself. Because this is it folks. What are we waiting for? Life is not something to schlep through. Life is not something to dread or hold on to the crap that(trust me, it is all about perspective. If what I am about to say offends you, give me a call, I can share some experience with you and we can have a glorious talk, promise)happened to you....life is happening right now. We all have our own unique process. I will always stand by this. What is it going to be? Now or later? I just don't think that I can trust in later anymore.
As a person who lost her Mother at a very young age(she was 28 years old, I was 4 years old) I do believe that I have always experienced a fierceness for life. A sort of hunger or inner knowing that I could never articulate but knew that it was there. I have always been a seeker and lived in a way that was expedia. I have moved around and always been on the go. People have legendarily told me to slow down but an inner burning has always told me to see more, smell more, taste more, touch more, more, more, more. I have always felt as though I looked at the world differently(and now have found that most people with TLE do!)and I knew that it was important way before it ever became important to experience this experience. Yes, I have lived recklessly at times and been irresponsible and caused worry and harm in the lives of those who love me. The good news is that I get to be here today and try to do the best that I can in each moment. Now.
And again....I choose now because there really may not be a later and I just have to be okay with that. With what ever may or may not come. I feel as though I am starting to sound like those new age self help books that I hate so much. yuck. But for now, I will just roll with it.
Tuesday, November 2, 2010
Perspective
Perspective:a mental view or outlook. Now that really opens things up for me. Good. Bad. Right. Wrong. These are all words that I hear. A lot. Suddenly they do not mean a whole lot to me. If I really think about it...these words have not held a whole lot of power in my life for quite some time and now they are almost oblivious.Why is it that we need to put things in a box? Wrap them up in our little boxes of fear. I am stepping out of that box and breathing in life today. Right now.
It is truly amazing how the things that were so important to me three months ago hold little or no significance in my life in this moment. This may change but for right now, everything is different. I have heard so many people talk of the powerlessness of having a life threatening disease or a near death experience but could not relate because it was not my experience. After the first seizure, I still could not really relate because I could not remember it but after about the third seizure that required hospitalization it started to become real to me and I began to have an understanding that I was powerless over something and my perspective began to change. I will never forget the look of absolute fear and devastation in my partners face when he woke me up and told me that I just had another seizure and that he had to take me to the hospital. That helps make it real too.
Things slowly started coming together and making sense. While it is devastating to find out that I have Temporal Lobe Epilepsy it is also relieving to have a name to what the hell has been wrong with me for so long! The double wammy did come today when the neuro doc told me that they saw a mass on the left side of my brain(good news is that the TLE is located on the right side...hooray!)that appears to be non cancerous. More Perspective! Scary but explains the years of vertigo and severe hearing loss!
So.....the moral of the story is...while I am in, shall we say, transition with all of this....it is alllllll about perspective. Are the boots really that important? Maybe. Why not? Who cares? I am truly laughing right now because it is just that simple. Who gives a fuck! And trust me...as a general rule, I do not curse because I think that it is not pretty but I have learned that sometimes life is just not pretty.
It is truly amazing how the things that were so important to me three months ago hold little or no significance in my life in this moment. This may change but for right now, everything is different. I have heard so many people talk of the powerlessness of having a life threatening disease or a near death experience but could not relate because it was not my experience. After the first seizure, I still could not really relate because I could not remember it but after about the third seizure that required hospitalization it started to become real to me and I began to have an understanding that I was powerless over something and my perspective began to change. I will never forget the look of absolute fear and devastation in my partners face when he woke me up and told me that I just had another seizure and that he had to take me to the hospital. That helps make it real too.
Things slowly started coming together and making sense. While it is devastating to find out that I have Temporal Lobe Epilepsy it is also relieving to have a name to what the hell has been wrong with me for so long! The double wammy did come today when the neuro doc told me that they saw a mass on the left side of my brain(good news is that the TLE is located on the right side...hooray!)that appears to be non cancerous. More Perspective! Scary but explains the years of vertigo and severe hearing loss!
So.....the moral of the story is...while I am in, shall we say, transition with all of this....it is alllllll about perspective. Are the boots really that important? Maybe. Why not? Who cares? I am truly laughing right now because it is just that simple. Who gives a fuck! And trust me...as a general rule, I do not curse because I think that it is not pretty but I have learned that sometimes life is just not pretty.
The Filter is Gone
It has become very clear to me lately that my on and off filter of pleasantries that I once thought was so important has left me. The example is as follows. Last night I was at a gathering of assorted people in which I share a common interest. Underneath the chair that I chose to sit in was a pen with the logo of a private club that I was employed by for a couple of years. Mind you, this club is not the Hilton, it is exclusive so people don't just carry around their pens. I thought that it was quite ironic and of course I can be demonstrative by nature and get excited by what I believe to be little "God Shots" like this one. What does it all mean? Who knows. But...the point is...this certain lady who smiles a lot at people while laughing behind their backs(I am a people watcher and I love to catch the so called fancy ladies who act all kind and saint like while gasp being human and messy and even mean!)was laughing at me. Naturally. Which is all good. Any type of emotion that my humanness can inspire in you is wonderful as far as I can tell. But, as I said, the filter is GONE. Please do not laugh at me while standing roughly one foot from me with your back to me. Being that the filter was gone I turned her corner and said something along the lines of are you laughing at me and oh, of course you are because that is what you do....you like to make fun of people. oops. Uncomfortable. So that is that. Mean? Maybe. Does it really matter? You tell me? Are we supposed to keep each other in check? Possibly.
The day has gone just as this today....I am learning at a rapid rate about the brain and all of its beauty and epilepsy and the rate that one can process information such as finding out that you have epilepsy at the age of 33 and then find out that there is a non related and hopefully non cancerous tumor on the other side of your brain. jeez. I do suppose that I owe my beloved Father a major amends now for blaming my hearing loss in my left ear on him for all of these years. I was certain that I could not hear out of that ear due to the years and years of riding in that darn side car with those Harley exhaust pipes blasting my ear drums. Sorry Dad. We had fun times and I would not change it for a minute. I do not regret riding around in my little bikini(that was always two sizes too small)and half helmet all over the State of Maine and New England and eating as much ice cream as I could jam in my body. It was all worth it. We lit it up. You were(and are) a great Dad. You set the bar high and I am so grateful that you gave me the love of adventure and the awe of life before I ever needed it. Love you Dad.
The day has gone just as this today....I am learning at a rapid rate about the brain and all of its beauty and epilepsy and the rate that one can process information such as finding out that you have epilepsy at the age of 33 and then find out that there is a non related and hopefully non cancerous tumor on the other side of your brain. jeez. I do suppose that I owe my beloved Father a major amends now for blaming my hearing loss in my left ear on him for all of these years. I was certain that I could not hear out of that ear due to the years and years of riding in that darn side car with those Harley exhaust pipes blasting my ear drums. Sorry Dad. We had fun times and I would not change it for a minute. I do not regret riding around in my little bikini(that was always two sizes too small)and half helmet all over the State of Maine and New England and eating as much ice cream as I could jam in my body. It was all worth it. We lit it up. You were(and are) a great Dad. You set the bar high and I am so grateful that you gave me the love of adventure and the awe of life before I ever needed it. Love you Dad.
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