Come sit a spell and shoot the breeze. Sweeten the day with a little synchronicity...
Tuesday, October 30, 2007
Sunday, October 28, 2007
I have always loved...
this song. i hadn't known there was a new version of it out. it figures someone would re-make it as it is such a classic. here are the two versions.
Saturday, October 27, 2007
you attract what you are
I heard this somewhere...the adage that you attract what you are. I think this may be true to some extent. When you look at your friends they usually have something in common with you.
This is interesting for me because I could fall into so many categories. I am a walking talking dichotomy of personality traits. Then you add on...circumstance and...I have no idea where I fit. I have often felt like a true outlier. Yet I can identify with so many different folk.
For example...
I grew up in poverty. I have experienced homelessness. I was definitely a ghetto kid.
But I did acquire an education. I hobnobbed with the academic set. I have a couple of Masters degrees. People would not be able to tell at the onset of my lower class background. But get me into an instance where I am angry...and ghetto girl comes out in a flash and I am ready to get into someone's face.
I am nerdy. As a kid I would buy myself workbooks as homework wasn't enough for me. I read encyclopedias. I collected bugs. One of my favorite "toys" was a chemistry set. I hung out with the smart kids and wrote dark poetry.
I am also flighty and dumb about many things. Along with the smart kids I used to hang out with the folk who drank and did drugs. I didn't do those things so much but somehow I could relate to their personalites. My first boyfriend was a thug who owned guns and dealt dope.
There is a little girl quality about me. I am innocent and naive. I am Pollyanna at times. I love to play. My favorite place in the world is Walt Disney World. I used to collect wind up banks. I love penny candy. I still watch the Wizard of Oz and get scared by the witch and those damn winged monkeys. I still believe in Santa Claus.
Then there is the jaded old woman in me. At times I have honed my sarcasm to a finely edged blade. It is more than easy to slice and dice. I have that power but I seldom use it. I can be very dark and at times too wise about the world. I have seen much in my life.
I am a bit of a loner. I love my alone times to be in my head. I love to go on long walks in the woods or to ride my bike. alone. I don't care for crowds or places to be seen. I like to remain small and hidden.
Then again...I can be the life of the party...gregarious and charming. I can be funny and entertaining. I can play the part of a diva...sensual but comedic. It all depends on my mood of course. There are times when I wish to be a hermit and have nothing to do with human relations. I grow so dissapointed in others. Yet in other instances I am craving connection and depth of bonding with others.
And then there are the circumstances of my life. I have survived thus far the following things:
* a mother who is schizophrenic
* a father who drank himself to death
* extreme poverty, neglect, homelessness
* sexual abuse, emotional and mental abuse, and physical abuse
* i have been a witness to drug and alcohol abuse (not my own)
* infertility for only a couple of years
* my own mood....severe depressions leaving me with little will to survive. but i have and will continue to do so. a rollercoaster of emotions...anxiety, inertia, deep and profound sadness, and also great joy, creativity, and productivity.
* my youngest son being diagnosed with autism and all that this has entailed these past years.
* and now MS
it has certainly been one wild ride thus far.
so who can i relate to? just about everyone it seems. i suppose i tend to like and be liked by those who are a bit intense in nature. i can relate to the creative folk...the photographers, poets, writers, artists, sculptors, and general dreamers. i tend to like those who are constantly searching and who feel there is something more. i admire those who wish to make a difference and want to change the world. i love funny people...those folk with a twisted sharp mind...who can take despair and find something to laugh about. i like complex people...full of depth and mystery.
i love honest people...who will say all the things you want to say but don't have the courage to do so. i love off the wall, odd, weird people. i tend to do well with folk who are a bit on the off kilter side...a touch of mania with some depression as the main course.
i love the mad genius type....also the absent minded professor...the geek...the nerd who is socially awkward. i love folks who watch documentaries and who are good at number crunching. i love the folk who could care less about fashion or how the weather might affect their hair. i love the underdog.
so what about you all? who can you relate to and why? who do you attract as friends? who are you?
This is interesting for me because I could fall into so many categories. I am a walking talking dichotomy of personality traits. Then you add on...circumstance and...I have no idea where I fit. I have often felt like a true outlier. Yet I can identify with so many different folk.
For example...
I grew up in poverty. I have experienced homelessness. I was definitely a ghetto kid.
But I did acquire an education. I hobnobbed with the academic set. I have a couple of Masters degrees. People would not be able to tell at the onset of my lower class background. But get me into an instance where I am angry...and ghetto girl comes out in a flash and I am ready to get into someone's face.
I am nerdy. As a kid I would buy myself workbooks as homework wasn't enough for me. I read encyclopedias. I collected bugs. One of my favorite "toys" was a chemistry set. I hung out with the smart kids and wrote dark poetry.
I am also flighty and dumb about many things. Along with the smart kids I used to hang out with the folk who drank and did drugs. I didn't do those things so much but somehow I could relate to their personalites. My first boyfriend was a thug who owned guns and dealt dope.
There is a little girl quality about me. I am innocent and naive. I am Pollyanna at times. I love to play. My favorite place in the world is Walt Disney World. I used to collect wind up banks. I love penny candy. I still watch the Wizard of Oz and get scared by the witch and those damn winged monkeys. I still believe in Santa Claus.
Then there is the jaded old woman in me. At times I have honed my sarcasm to a finely edged blade. It is more than easy to slice and dice. I have that power but I seldom use it. I can be very dark and at times too wise about the world. I have seen much in my life.
I am a bit of a loner. I love my alone times to be in my head. I love to go on long walks in the woods or to ride my bike. alone. I don't care for crowds or places to be seen. I like to remain small and hidden.
Then again...I can be the life of the party...gregarious and charming. I can be funny and entertaining. I can play the part of a diva...sensual but comedic. It all depends on my mood of course. There are times when I wish to be a hermit and have nothing to do with human relations. I grow so dissapointed in others. Yet in other instances I am craving connection and depth of bonding with others.
And then there are the circumstances of my life. I have survived thus far the following things:
* a mother who is schizophrenic
* a father who drank himself to death
* extreme poverty, neglect, homelessness
* sexual abuse, emotional and mental abuse, and physical abuse
* i have been a witness to drug and alcohol abuse (not my own)
* infertility for only a couple of years
* my own mood....severe depressions leaving me with little will to survive. but i have and will continue to do so. a rollercoaster of emotions...anxiety, inertia, deep and profound sadness, and also great joy, creativity, and productivity.
* my youngest son being diagnosed with autism and all that this has entailed these past years.
* and now MS
it has certainly been one wild ride thus far.
so who can i relate to? just about everyone it seems. i suppose i tend to like and be liked by those who are a bit intense in nature. i can relate to the creative folk...the photographers, poets, writers, artists, sculptors, and general dreamers. i tend to like those who are constantly searching and who feel there is something more. i admire those who wish to make a difference and want to change the world. i love funny people...those folk with a twisted sharp mind...who can take despair and find something to laugh about. i like complex people...full of depth and mystery.
i love honest people...who will say all the things you want to say but don't have the courage to do so. i love off the wall, odd, weird people. i tend to do well with folk who are a bit on the off kilter side...a touch of mania with some depression as the main course.
i love the mad genius type....also the absent minded professor...the geek...the nerd who is socially awkward. i love folks who watch documentaries and who are good at number crunching. i love the folk who could care less about fashion or how the weather might affect their hair. i love the underdog.
so what about you all? who can you relate to and why? who do you attract as friends? who are you?
Thursday, October 25, 2007
Photo Thursday!
Hi guys!
It has been awhile since I have posted any sort of photos. Perhaps I will make it a weekly venture. At any rate here is a pic of me in a serene mood...this is becoming a rare state of mind for me.
Tuesday, October 23, 2007
Logic, reasoning, and gut feelings
after much deliberation i have come to some conclusions about the things i have to decide upon.
i think one of the hardest things to deal with about decision making is that we don't want to feel trapped or locked in. we need room to change things if need be.
this is why i have decided NOT to take zoloft. i researched it, looked at all the side effects, and came to the conclusion that it can be a very difficult drug to tolerate. it also is one which is hard to get weaned off. if i made the decision to try it, i would have to be committed to taking it for some time. i read case after case of people talking about how hard this particular drug was upon their system and how they sometimes acquired new symptoms upon stopping it. no.
i like the idea of starting with the least amount of side effects and potential harm but also having the most benefits. i do like natural remedies.
this will all be a process of figuring out what works best for me.
i am gonna try SAM-e first. and then i am gonna try st. john's wort as a back up if the first doesn't work. i am also going to do everything in my power to stay mentally healthy and keep my mood up. i am going to exercise. i am going to join a support group. i am going to get a counselor specializing in health issues.
the good thing about hitting the bottom is that there is nowhere else to go but up. i realize there are bottoms and there are deeper wells to fall into but...i am not going to fall anymore. it is time for me to take responsibility for my biologically induced moods.
if the natural ways do not work...then i will research again about an anti-depressant which makes sense for me.
now the biggie...
the rebif. dear lord...the company is already calling and wanting to be of assistance. i feel like the patron of a store where the salespeople are frothing at the mouth to come and "assist" you as you slowly walk backwards towards the door so you can run as soon as your foot nears the exit.
no.
not ready.
my MS is slow moving. i have no new lesions. they have not grown in size. i have none on my spine. i want to wait. i see no danger waiting until at least...i have another true episode.
i have been reading and researching for months. this is what i do best. i am not entering this blindly. i have read what many people have said about their experiences. i have looked at the studies.
when i do take the rebif...and i am fairly sure that i will take it or one of the other meds in the future...i want to be committed to the process. i will have to be. i will have to believe that what i am doing is going to be good for me.
some of the rebif stats from their own company literature seem good. but some...i wonder how they can justify the cost of this drug which lacks much efficacy.
for example...this stat does not seem very promising to me: "Prims 2-year data: Rebif is proven to significantly slow the progression of MS. 74% of people taking Rebif 44 mcg had no disease progression at 2 years vs 63% of patients taking placebo."
so basically well more than half of folks who do not take meds will not progress with their MS within two years. and then there are the folks who WILL progress no matter if they are on rebif or not.
there is a lot to digest. stats only tell part of the picture. stats are not gonna talk about the long term effects of these drugs as this is unknown at this time. stats are not going to talk about quality of life. stats do not address the unique challenges each person having MS has to face in addition to his or her disease.
logic and reasoning aside...this is more than a scientific matter...this is a personal gut decision.
i will undoubtedly try rebif. but it does not make sense to me to do it now.
i will wait.
i think one of the hardest things to deal with about decision making is that we don't want to feel trapped or locked in. we need room to change things if need be.
this is why i have decided NOT to take zoloft. i researched it, looked at all the side effects, and came to the conclusion that it can be a very difficult drug to tolerate. it also is one which is hard to get weaned off. if i made the decision to try it, i would have to be committed to taking it for some time. i read case after case of people talking about how hard this particular drug was upon their system and how they sometimes acquired new symptoms upon stopping it. no.
i like the idea of starting with the least amount of side effects and potential harm but also having the most benefits. i do like natural remedies.
this will all be a process of figuring out what works best for me.
i am gonna try SAM-e first. and then i am gonna try st. john's wort as a back up if the first doesn't work. i am also going to do everything in my power to stay mentally healthy and keep my mood up. i am going to exercise. i am going to join a support group. i am going to get a counselor specializing in health issues.
the good thing about hitting the bottom is that there is nowhere else to go but up. i realize there are bottoms and there are deeper wells to fall into but...i am not going to fall anymore. it is time for me to take responsibility for my biologically induced moods.
if the natural ways do not work...then i will research again about an anti-depressant which makes sense for me.
now the biggie...
the rebif. dear lord...the company is already calling and wanting to be of assistance. i feel like the patron of a store where the salespeople are frothing at the mouth to come and "assist" you as you slowly walk backwards towards the door so you can run as soon as your foot nears the exit.
no.
not ready.
my MS is slow moving. i have no new lesions. they have not grown in size. i have none on my spine. i want to wait. i see no danger waiting until at least...i have another true episode.
i have been reading and researching for months. this is what i do best. i am not entering this blindly. i have read what many people have said about their experiences. i have looked at the studies.
when i do take the rebif...and i am fairly sure that i will take it or one of the other meds in the future...i want to be committed to the process. i will have to be. i will have to believe that what i am doing is going to be good for me.
some of the rebif stats from their own company literature seem good. but some...i wonder how they can justify the cost of this drug which lacks much efficacy.
for example...this stat does not seem very promising to me: "Prims 2-year data: Rebif is proven to significantly slow the progression of MS. 74% of people taking Rebif 44 mcg had no disease progression at 2 years vs 63% of patients taking placebo."
so basically well more than half of folks who do not take meds will not progress with their MS within two years. and then there are the folks who WILL progress no matter if they are on rebif or not.
there is a lot to digest. stats only tell part of the picture. stats are not gonna talk about the long term effects of these drugs as this is unknown at this time. stats are not going to talk about quality of life. stats do not address the unique challenges each person having MS has to face in addition to his or her disease.
logic and reasoning aside...this is more than a scientific matter...this is a personal gut decision.
i will undoubtedly try rebif. but it does not make sense to me to do it now.
i will wait.
Monday, October 22, 2007
Check it out!
We can now put polls on our blogs! Did you know? Go to customize and you will see!
Be sure to try out mine on the right side bar. This should be fun!
I wanted to also tell you guys that I am continuing to look for links to interesting people and blogs. In my recent efforts I have found folks who write about mood and how they are coping. Again...check out my side bar for new links and pay a visit!
Be sure to try out mine on the right side bar. This should be fun!
I wanted to also tell you guys that I am continuing to look for links to interesting people and blogs. In my recent efforts I have found folks who write about mood and how they are coping. Again...check out my side bar for new links and pay a visit!
Sunday, October 21, 2007
Gimme your links!
Been making my rounds and visiting some of you guys. I have noticed that some of us have dropped off the face of the earth. I hope everyone is okay.
I am looking for some new links though. Are there any links to folks who have MS that I haven't found yet?
Do you have any good links to people who...
1. Have MS and/or...
2. Have experienced a mood disorder and/or
3. Have a child with special needs
and let's add to the list...
4. People who are writers, artists or musicians...creative artsy fartsy types
5. General nerds
6. and last but not least...funny people. I can use some laughs!
Let the search begin! Give me your links!
I am looking for some new links though. Are there any links to folks who have MS that I haven't found yet?
Do you have any good links to people who...
1. Have MS and/or...
2. Have experienced a mood disorder and/or
3. Have a child with special needs
and let's add to the list...
4. People who are writers, artists or musicians...creative artsy fartsy types
5. General nerds
6. and last but not least...funny people. I can use some laughs!
Let the search begin! Give me your links!
Friday, October 19, 2007
What a week!
I do promise to be a fully functioning human being again. I have much catching up to do and writing letters. I will probably have some time this weekend to comment and correspond. I miss you guys!
Oh me oh my! Oh my oh me! Oy gevalt! and Hooo weee!
My brain is on overload. Too much to process.
I have many decisions to make it seems. To do nothing is also a decision.
I absolutely do need help and feedback. I will most likely end up doing all these things I will tell you about but I may wait on some.
I actually began to talk of one item on my list on an MS support group list and...I just had to take a break because some of the comments I received were not so supportive. So be gentle with me.
Ahhh the wide world of medication!
I am new to all of this. And make no mistake...I am afraid. I don't want to have MS. I am thinking some good old fashioned denial may be in order. But well...okay I have it. There is no going back. I even tried to shamelessly wheedle a different answer out of my neurologist today. The conversation went something like this.
Me: "So there is no way that my lesions could just go away?"
My doc: "Nope. Looks like they are are here to stay.
Me: "So there is no other cause for my symptoms and MRI findings?"
My doc: "Nope. Everything is indicative of MS. We have ruled everything else out. You get the official diagnostic #340 code."
Me: "You want to talk about meds again don't you?"
My doc: "Yes it is time to talk about treatment again."
See...thing is...I um...had put off the whole meds thing for some months. I wasn't ready. And now... I AM STILL NOT READY!
There...I said it. Please don't guilt or shame me. I know I am lucky to have a milder course of this right now than most folks. I know I am so terribly lucky to get an early diagnosis. Thank god I will not be kept in limbo about all this as some people have for months and years and even decades. I know I am fortunate to have drug choices that people didn't have in years past.
I know.
But this still is such a big decision and I do need to think about it and weigh all the pros and cons.
It is more than fear which is hindering my decison to take meds. It is also the rate of efficacy for any one of the drugs. Let's face it...the efficacy rate is low...30% for most of them. Those are not good odds in my book. Possible liver damage? Needles? Being sick all the time? And...oh by the way...it might work...it might not.
So basically I gotta be sick now in order to not be very sick in the future.
My tricky neuro got me to sign something to get the process started. My insurance needs to approve this very expensive med so we got that started. A nurse is supposed to show up to show me how to do the shot. I told my doc that I am still not at all sure about taking Rebif yet. I was re-assured that I can decline taking it but that of course, I would need to inform her.
She gave me this nifty cardboard Rebif suitcase of information. The picture on this rather tacky box shows a couple who are balancing on rocks and smiling into a sunset. Mmmmmhmmmm....yeah. Gee...that is exactly how I feel! I want to all of a sudden take up hang gliding, rock climbing, and jumping out of airplanes!
Oh...I...just really don't know what I will do.
Anyways....
Number two concerns my mood. This MS is kicking my ass in the mood department. I am normally a bit emotionally volatile. Those who know me are probably smiling...uh...yeah...just a bit. But the MS has made my moods fluctuate even more wildly. And I pride myself on being a fully funtional person who suffers from depression but lately...it has been very hard. To say the least.
I have only taken an anti-depressant once before...I was in my twenties...I had a miscarraige...was going to grad school...had a full time job...tons of pressures in addition to the biological/emotional depression caused by losing a baby and...I reluctantly agreed to taking an SSRI. I got off of it as soon as I could.
I am not anti-meds. I worked in the field of human services. There are times when such drugs save lives. I know that. Yet it has always been my own bias for myself and nobody else that...I could always handle whatever comes without using meds.
But now...knowing that between my own biological disposition towards depression with the addition of MS causing physical problems related to mood....AND if I do decide to choose to take Rebif...this medication also can cause depression....knowing all of this...
I am waving the flag of surrender.
Okay maybe it is time to try something.
Zoloft. I got a prescription for Zoloft today. We will see when and if I take it.
Add to all of this, I decided to take my youngest son who has autism to see a neurologist as well. He is nearing adolescence and he has been experincing his own rollercoaster of moods. I have never taken him to a neuro before. We left with a prescription for Prozac.
I am always a latecomer to everything. Now that I am finally receptive to thinking about meds...seems there is a backlash against them.
Okay...lay it on me. What are your thoughts, opinions, advice, and experiences?
In summary:
1. Should I try Rebif? Now or...maybe wait? My MS is not progressing so far. No new lesions and they have not grown in size these past months.
2. Should I try Zoloft or opt to find more natural treatments?
3. Should I try Prozac for my son?
Oh me oh my! Oh my oh me! Oy gevalt! and Hooo weee!
My brain is on overload. Too much to process.
I have many decisions to make it seems. To do nothing is also a decision.
I absolutely do need help and feedback. I will most likely end up doing all these things I will tell you about but I may wait on some.
I actually began to talk of one item on my list on an MS support group list and...I just had to take a break because some of the comments I received were not so supportive. So be gentle with me.
Ahhh the wide world of medication!
I am new to all of this. And make no mistake...I am afraid. I don't want to have MS. I am thinking some good old fashioned denial may be in order. But well...okay I have it. There is no going back. I even tried to shamelessly wheedle a different answer out of my neurologist today. The conversation went something like this.
Me: "So there is no way that my lesions could just go away?"
My doc: "Nope. Looks like they are are here to stay.
Me: "So there is no other cause for my symptoms and MRI findings?"
My doc: "Nope. Everything is indicative of MS. We have ruled everything else out. You get the official diagnostic #340 code."
Me: "You want to talk about meds again don't you?"
My doc: "Yes it is time to talk about treatment again."
See...thing is...I um...had put off the whole meds thing for some months. I wasn't ready. And now... I AM STILL NOT READY!
There...I said it. Please don't guilt or shame me. I know I am lucky to have a milder course of this right now than most folks. I know I am so terribly lucky to get an early diagnosis. Thank god I will not be kept in limbo about all this as some people have for months and years and even decades. I know I am fortunate to have drug choices that people didn't have in years past.
I know.
But this still is such a big decision and I do need to think about it and weigh all the pros and cons.
It is more than fear which is hindering my decison to take meds. It is also the rate of efficacy for any one of the drugs. Let's face it...the efficacy rate is low...30% for most of them. Those are not good odds in my book. Possible liver damage? Needles? Being sick all the time? And...oh by the way...it might work...it might not.
So basically I gotta be sick now in order to not be very sick in the future.
My tricky neuro got me to sign something to get the process started. My insurance needs to approve this very expensive med so we got that started. A nurse is supposed to show up to show me how to do the shot. I told my doc that I am still not at all sure about taking Rebif yet. I was re-assured that I can decline taking it but that of course, I would need to inform her.
She gave me this nifty cardboard Rebif suitcase of information. The picture on this rather tacky box shows a couple who are balancing on rocks and smiling into a sunset. Mmmmmhmmmm....yeah. Gee...that is exactly how I feel! I want to all of a sudden take up hang gliding, rock climbing, and jumping out of airplanes!
Oh...I...just really don't know what I will do.
Anyways....
Number two concerns my mood. This MS is kicking my ass in the mood department. I am normally a bit emotionally volatile. Those who know me are probably smiling...uh...yeah...just a bit. But the MS has made my moods fluctuate even more wildly. And I pride myself on being a fully funtional person who suffers from depression but lately...it has been very hard. To say the least.
I have only taken an anti-depressant once before...I was in my twenties...I had a miscarraige...was going to grad school...had a full time job...tons of pressures in addition to the biological/emotional depression caused by losing a baby and...I reluctantly agreed to taking an SSRI. I got off of it as soon as I could.
I am not anti-meds. I worked in the field of human services. There are times when such drugs save lives. I know that. Yet it has always been my own bias for myself and nobody else that...I could always handle whatever comes without using meds.
But now...knowing that between my own biological disposition towards depression with the addition of MS causing physical problems related to mood....AND if I do decide to choose to take Rebif...this medication also can cause depression....knowing all of this...
I am waving the flag of surrender.
Okay maybe it is time to try something.
Zoloft. I got a prescription for Zoloft today. We will see when and if I take it.
Add to all of this, I decided to take my youngest son who has autism to see a neurologist as well. He is nearing adolescence and he has been experincing his own rollercoaster of moods. I have never taken him to a neuro before. We left with a prescription for Prozac.
I am always a latecomer to everything. Now that I am finally receptive to thinking about meds...seems there is a backlash against them.
Okay...lay it on me. What are your thoughts, opinions, advice, and experiences?
In summary:
1. Should I try Rebif? Now or...maybe wait? My MS is not progressing so far. No new lesions and they have not grown in size these past months.
2. Should I try Zoloft or opt to find more natural treatments?
3. Should I try Prozac for my son?
Saturday, October 13, 2007
Scary Movie Time
Halloween is coming!
I have to say that...Halloween is one of my favorite holidays. For one it does not involve extended family, there is no guilt driven present mania, you get to scare people and be scared, you get to eat little itty bitty candy bars that the the trick or treaters didn't get, and you can have an excuse to watch campy horror films!
Growing up as a kid I would watch this local show called Chiller Theater with Chilly Billy Cardille. Oh how I loved that show. It was on real late after the last news and it was literally the last show of the evening. It was a challenge to first of all...be allowed to stay up that late and secondly...to actually be able to have the stamina to stay up through not one but two horror movies.
Chilly Billy was such a celebrity. He started off doing the show for fun and it just grew in popularity. Watching some of the older shows before my time is a hoot. Back then they didn't have so much censoring and there was a lot of risky humor that might have slipped by you if you weren't paying attention.
One such uncensored moment is when Chilly Billy made a joke about Liberty Avenue. Anyone who knows Pittsburgh knows that this was the red light district. Another such politically incorrect moment happened when Jerry Lewis did a spot on the show which featured Stephen the Castle Prankster, one of the characters on Chiller Theater. Stephen is a little person and Jerry Lewis picked him up and said something like, "I wish to thank the academy for this award." I dare say that this type of off the cuff humor would not fly today.
I was thinking about Chiller Theater one morning as I woke up with the theme song music cavorting in my brain. What memories this brought back for me...sleepovers with real buttered popcorn and watching classics such as Night of the Living Dead. Did you know that the original Night of the Living Dead was shot in Pittsburgh, and my beloved Chilly Billy had a role in it!
Here is a link to Chiller Theater so you too can become enchanted by the likes of Chilly Billy, Terminal Stare, and Stephen the Castle Prankster.
Did you have such a local horror show growing up?
Oh and last but not least...
Give me your top 5 list of Horror movies. I want to see as many as I can before Halloween. Only thing is...I am absolutely not fond of slasher/gore movies. I tend to like the classics like Rosemary's Baby, The Shining, American Werewolf in London and the like. But I am open to new movies.
So what are your favorite horror movies of all time? Do tell all!
Friday, October 12, 2007
Thank you...
Just wanted to say thanks for all your comments on my last post.
I am new to this whole going to the hospital thang. I have no clue when to speak up and when to just suck it up. As I gain some more experience with all of this I hope to be more assertive. It is so scary to place so much trust into folks who you have no idea what their skill level is in doing the procedures they are doing to you.
It is just so very helpful to hear of your experiences...I am such a newbie to all of this.
Let me tell you of my medical history. There is none! I have not so much as sprained an ankle. I have never broken any bones. I have never even been stung by a bee in my lifetime. I went for years in my college days not having any insurance and not seeing a doctor. I have never really needed to. And let me tell you...when I do go...I am a big chicken. I loathe hospitals and I am so not fond of doctors.
So yeah...I can use all the help I can get.
Thanks again for your words of support and your sharing of your experiences. It helps me a lot and no doubt helps anyone who reads this blog!
Okey dokey smokies...
more of this and that to come.
are you excited or what?
I am new to this whole going to the hospital thang. I have no clue when to speak up and when to just suck it up. As I gain some more experience with all of this I hope to be more assertive. It is so scary to place so much trust into folks who you have no idea what their skill level is in doing the procedures they are doing to you.
It is just so very helpful to hear of your experiences...I am such a newbie to all of this.
Let me tell you of my medical history. There is none! I have not so much as sprained an ankle. I have never broken any bones. I have never even been stung by a bee in my lifetime. I went for years in my college days not having any insurance and not seeing a doctor. I have never really needed to. And let me tell you...when I do go...I am a big chicken. I loathe hospitals and I am so not fond of doctors.
So yeah...I can use all the help I can get.
Thanks again for your words of support and your sharing of your experiences. It helps me a lot and no doubt helps anyone who reads this blog!
Okey dokey smokies...
more of this and that to come.
are you excited or what?
Thursday, October 11, 2007
The Human Pin Cushion
Is it Thursday already?
I am totally allowing time to escape me.
Yes Monday I had my MRI, this has been my fourth in my lifetime thus far. And it is best if I get used to them. The very first one I had was ten years ago and I was claustrophobic and fearful. I have totally gotten over that part. What has been problematic recently has not been the time in the machine but the injection of dye for contrast.
Last time the person doing the IV messed up somehow and my arm was burning for more than an hour afterwards. I have no idea what she did to cause that reaction.
So this time as I was being led to the machine that goes ping, I politely asked them to prevent that problem from happening again. This must have been interpreted as to cause me as much pain as possible.
The tech guy setting up my IV was nice enough, engaging in the small chit chat that most hospital folk do when they are doing unthinkable things to you. But man was he inept or inexperienced at doing an IV. The other times I had contrast, they would bring me out of the machine and set me up then. This time they wanted to hook it all up beforehand to save time. Believe me...this was no time saver.
Now I am not fond of needles but I have certainly had IV's before and so I just closed my eyes and let him do his thing. Then I felt great pain. He was jiggling around in my vein. I *knew* something was wrong. He then proclaimed, "Wow that is going to hurt a lot later!" I had no idea what was going on and didn't want to look. He was acting like we were both a witness to an awesome phenomena. He added, "Man...your vein is just puffing out like crazy...want to see?"
I was...a little scared at that point.
Here I thought he was finished with me when I find he is going for another vein in the other hand. I almost muttered out loud, "Oh dear god no!" But I didn't dear reader. I sucked it up and dreamed of when this mutilation would end. So he does the same damage to another vein and the more his wiggling around in there...the worse I am beginning to feel. That day I felt dizzy to start because of my MS so...yeah...this was not fun. The evil tech guy then told me that there was a little blood. I peeked and saw a big blotch of blood on the gurney. I think it was then that I began to feel downright woozy.
He told me that he would have to call the "stick team" to get into my veins. Seems I have tiny veins. Hey...I am a petite woman...I can't help it if my veins are small and they should know how to do this sort of thing without causing injury.
I was led towards the MRI machine and told that they would just have to inject the dye in between scans. I was barely able to walk at this point and I began to get that clammy sick to my stomach before I pass out kinda feeling. Of course this was a further hindrance to their schedule. I fell into a chair and told him that I was not going anywhere. I told him that I might throw up and he casually pointed to an out of the way waste basket.
While I was still trying to maintain the dignity of not tossing my cookies, he was asking me what kind of music I wanted to hear during my MRI. I winced in desperation. I wasn't exactly caring about music right then. Actually I considered running out of there! But I didn't and he pressed on for an answer, "You know...what do you listen to on the radio?" I whimpered, "Contemporaryyyyy"
I finally felt better enough to go lay down in the machine. I thought I only had to do a repeat of my brain scan but I learned right before going into the machine, that I also had to do a repeat cervical spine scan. I audibly sighed.
Before going in, the "stick team" came to puncture me once more. The stick team consisted of one overly jolly nurse who I prayed was competent. The evil tech dude told me that she was even better than he was, and that he was pretty damn good. Right. Yes he was possibly better than a trained monkey set loose with needles. This nurse had trouble finding my veins too. She even asked me for help, "Do you have any good veins that you know of?" Gee...yeah I will give you a diagram next time. I was about to plead for mercy when she plucked my arm like a banjo to find a suitable vein. This time she said out loud, "I can't tell if this is a tendon or a vein." At this point in time, I should have just gotten up and left. But I didn't. Turned out that she did find a vein. The evil tech dude asked if she needed a "four" something or other and she told him, "Oh lord no, we need a two." So if I could interpret that correctly, he had been sticking something way too big into little 'ol me! Hmmm...that sounded kinda funny there. Get your mind out of the gutter!
Finally I could go into the machine to start the scan. I relaxed somewhat, knowing that the needle torture was finished for the time being.
I left the hospital with three bruises, one was swelling to golf ball sized proportions. I was granted an ice-pack which I was told would only be helpful for about five minutes. The evil tech guy admonished me that he hoped never to see me there again. Oh likewise buddy. The feeling was totally mutual.
Now I wait for results.
Are we having fun yet?
I am totally allowing time to escape me.
Yes Monday I had my MRI, this has been my fourth in my lifetime thus far. And it is best if I get used to them. The very first one I had was ten years ago and I was claustrophobic and fearful. I have totally gotten over that part. What has been problematic recently has not been the time in the machine but the injection of dye for contrast.
Last time the person doing the IV messed up somehow and my arm was burning for more than an hour afterwards. I have no idea what she did to cause that reaction.
So this time as I was being led to the machine that goes ping, I politely asked them to prevent that problem from happening again. This must have been interpreted as to cause me as much pain as possible.
The tech guy setting up my IV was nice enough, engaging in the small chit chat that most hospital folk do when they are doing unthinkable things to you. But man was he inept or inexperienced at doing an IV. The other times I had contrast, they would bring me out of the machine and set me up then. This time they wanted to hook it all up beforehand to save time. Believe me...this was no time saver.
Now I am not fond of needles but I have certainly had IV's before and so I just closed my eyes and let him do his thing. Then I felt great pain. He was jiggling around in my vein. I *knew* something was wrong. He then proclaimed, "Wow that is going to hurt a lot later!" I had no idea what was going on and didn't want to look. He was acting like we were both a witness to an awesome phenomena. He added, "Man...your vein is just puffing out like crazy...want to see?"
I was...a little scared at that point.
Here I thought he was finished with me when I find he is going for another vein in the other hand. I almost muttered out loud, "Oh dear god no!" But I didn't dear reader. I sucked it up and dreamed of when this mutilation would end. So he does the same damage to another vein and the more his wiggling around in there...the worse I am beginning to feel. That day I felt dizzy to start because of my MS so...yeah...this was not fun. The evil tech guy then told me that there was a little blood. I peeked and saw a big blotch of blood on the gurney. I think it was then that I began to feel downright woozy.
He told me that he would have to call the "stick team" to get into my veins. Seems I have tiny veins. Hey...I am a petite woman...I can't help it if my veins are small and they should know how to do this sort of thing without causing injury.
I was led towards the MRI machine and told that they would just have to inject the dye in between scans. I was barely able to walk at this point and I began to get that clammy sick to my stomach before I pass out kinda feeling. Of course this was a further hindrance to their schedule. I fell into a chair and told him that I was not going anywhere. I told him that I might throw up and he casually pointed to an out of the way waste basket.
While I was still trying to maintain the dignity of not tossing my cookies, he was asking me what kind of music I wanted to hear during my MRI. I winced in desperation. I wasn't exactly caring about music right then. Actually I considered running out of there! But I didn't and he pressed on for an answer, "You know...what do you listen to on the radio?" I whimpered, "Contemporaryyyyy"
I finally felt better enough to go lay down in the machine. I thought I only had to do a repeat of my brain scan but I learned right before going into the machine, that I also had to do a repeat cervical spine scan. I audibly sighed.
Before going in, the "stick team" came to puncture me once more. The stick team consisted of one overly jolly nurse who I prayed was competent. The evil tech dude told me that she was even better than he was, and that he was pretty damn good. Right. Yes he was possibly better than a trained monkey set loose with needles. This nurse had trouble finding my veins too. She even asked me for help, "Do you have any good veins that you know of?" Gee...yeah I will give you a diagram next time. I was about to plead for mercy when she plucked my arm like a banjo to find a suitable vein. This time she said out loud, "I can't tell if this is a tendon or a vein." At this point in time, I should have just gotten up and left. But I didn't. Turned out that she did find a vein. The evil tech dude asked if she needed a "four" something or other and she told him, "Oh lord no, we need a two." So if I could interpret that correctly, he had been sticking something way too big into little 'ol me! Hmmm...that sounded kinda funny there. Get your mind out of the gutter!
Finally I could go into the machine to start the scan. I relaxed somewhat, knowing that the needle torture was finished for the time being.
I left the hospital with three bruises, one was swelling to golf ball sized proportions. I was granted an ice-pack which I was told would only be helpful for about five minutes. The evil tech guy admonished me that he hoped never to see me there again. Oh likewise buddy. The feeling was totally mutual.
Now I wait for results.
Are we having fun yet?
Monday, October 8, 2007
Today's the day...
Today is my MRI day.
I do apologize for my little hiatus there. I just needed some time to clear my head and to collect myself if you will.
I definitely will be back and I am in the mood for some light fun. How about you? I have been too darn serious lately.
Know that I am thinking about you guys and I know I have some letter writing as well as visiting/commenting to do.
Thanks for putting up with me.
Think of me...I will be in the machine that goes ping (remember monty python). Hope you guys have a great day...
More to come very soon.
I do apologize for my little hiatus there. I just needed some time to clear my head and to collect myself if you will.
I definitely will be back and I am in the mood for some light fun. How about you? I have been too darn serious lately.
Know that I am thinking about you guys and I know I have some letter writing as well as visiting/commenting to do.
Thanks for putting up with me.
Think of me...I will be in the machine that goes ping (remember monty python). Hope you guys have a great day...
More to come very soon.
Tuesday, October 2, 2007
The Invisible People
Lately I find myself being drawn to people who might otherwise be invisible.
I was at a park the other day with my son. We sat at a picnic table, the fresh autumn breeze whispered by, as I spied two people in my periphery. There were two men eating lunch at a nearby table. One was an elderly gentleman with a kind face, a baseball cap covering his brow. The other man was much younger and he had some sort of identification card around his neck. I quickly surmised that the younger man was some sort of health care worker. The two sat in silence, not talking or even looking at each other. The worker got up when they were finished and the kindly looking elderly man slowly followed. He had a cane and he paced himself to keep up with his caregiver. The sun dappled through the trees casting a halo about his capped head. It was then that I looked at his face, which although weathered, reminded me of a young boy, innocent and forlorn.
Something about this man's image made me feel wistfully sad. Perhaps it was the fact that his "friend" was someone who had to be paid to be there for him. Maybe it was the thinking that I too would someday experience the autumn of my life. Or maybe it was the realization that there are so many invisible people in the world who go unnoticed, even by the people nearest to them.
The other day I saw an older couple at the local coffee shop. Just like any other couple at a coffee shop, they were sipping their drinks at a little lattice table while reading the newspaper. But what was unique about this particular couple was that the man was pulling around an oxygen tank and his wife was confined to a wheelchair. I watched as the man struggled just a bit to get the bulky tank in between the aisle of tables so he could order. His wife waited outside in her wheelchair. They both went about their business anonymously to blend in with the small cafe crowd. Nobody seemed to give much notice to them at all. Most people avoided any eye contact and would instead divert their gaze to inhuman metal appendages such as the tank of oxygen or the wheels of the woman’s chair. When they left, the husband opened the door to their van which was equipped with a ramp for his wife to get into the vehicle. When they drove away, the empty concrete parking spot left no trace of their existence. It was then that I sat and wondered. I wondered if this was the future they had imagined. I wondered if their coffee shop time was special or was it merely part of an ordinary routine. Did they get out much? Do they ever hold hands? I marveled at the level of trust they must have for one another as they navigate through life bound by certain un-negotiable limitations.
Once again I felt a bittersweet melancholy wash over me. I thought about all the people you see from a distance but don't really see. These people pass in and out of your periphery without much of a glance or thought. But these days my eyes are open and it is as though I am finally seeing the world and its inhabitants for the first time.
Today I bought a small pumpkin for my son at the store. I was passing by the card section when I looked up to see a thin gaunt woman with a buggy full of food and one toddler sitting in the front. The little girl was bright and smiling; tufts of blonde fairy hair fell below her shoulders. I was looking downward, lost in my own thoughts so it was only when the woman was directly in front of me that I noticed she didn't have any hair. She was totally bald. No scarf, turban, or wig hid her condition from view. I felt almost proud of this stranger for her fearless exposure. I quickly looked away as I didn't want to stare. I wanted to reach out and say, "You are not invisible to me. I see you and you matter." but of course I didn't do or say any of those things. Instead I quickly averted my eyes and moved stealthily past her as though she didn't exist.
The protocol is what it has always been. We turn our head and heart away only to pretend that the faces we see are as meaningless as an empty grey slate. We never let on that we are touched, that we feel, and that we search for our own reflection in the crowd. We languidly move through life with eyes which only see inward, avoiding any need for human connection. Our empty eyes are met with nothingness and we too become one of the invisible.
I was at a park the other day with my son. We sat at a picnic table, the fresh autumn breeze whispered by, as I spied two people in my periphery. There were two men eating lunch at a nearby table. One was an elderly gentleman with a kind face, a baseball cap covering his brow. The other man was much younger and he had some sort of identification card around his neck. I quickly surmised that the younger man was some sort of health care worker. The two sat in silence, not talking or even looking at each other. The worker got up when they were finished and the kindly looking elderly man slowly followed. He had a cane and he paced himself to keep up with his caregiver. The sun dappled through the trees casting a halo about his capped head. It was then that I looked at his face, which although weathered, reminded me of a young boy, innocent and forlorn.
Something about this man's image made me feel wistfully sad. Perhaps it was the fact that his "friend" was someone who had to be paid to be there for him. Maybe it was the thinking that I too would someday experience the autumn of my life. Or maybe it was the realization that there are so many invisible people in the world who go unnoticed, even by the people nearest to them.
The other day I saw an older couple at the local coffee shop. Just like any other couple at a coffee shop, they were sipping their drinks at a little lattice table while reading the newspaper. But what was unique about this particular couple was that the man was pulling around an oxygen tank and his wife was confined to a wheelchair. I watched as the man struggled just a bit to get the bulky tank in between the aisle of tables so he could order. His wife waited outside in her wheelchair. They both went about their business anonymously to blend in with the small cafe crowd. Nobody seemed to give much notice to them at all. Most people avoided any eye contact and would instead divert their gaze to inhuman metal appendages such as the tank of oxygen or the wheels of the woman’s chair. When they left, the husband opened the door to their van which was equipped with a ramp for his wife to get into the vehicle. When they drove away, the empty concrete parking spot left no trace of their existence. It was then that I sat and wondered. I wondered if this was the future they had imagined. I wondered if their coffee shop time was special or was it merely part of an ordinary routine. Did they get out much? Do they ever hold hands? I marveled at the level of trust they must have for one another as they navigate through life bound by certain un-negotiable limitations.
Once again I felt a bittersweet melancholy wash over me. I thought about all the people you see from a distance but don't really see. These people pass in and out of your periphery without much of a glance or thought. But these days my eyes are open and it is as though I am finally seeing the world and its inhabitants for the first time.
Today I bought a small pumpkin for my son at the store. I was passing by the card section when I looked up to see a thin gaunt woman with a buggy full of food and one toddler sitting in the front. The little girl was bright and smiling; tufts of blonde fairy hair fell below her shoulders. I was looking downward, lost in my own thoughts so it was only when the woman was directly in front of me that I noticed she didn't have any hair. She was totally bald. No scarf, turban, or wig hid her condition from view. I felt almost proud of this stranger for her fearless exposure. I quickly looked away as I didn't want to stare. I wanted to reach out and say, "You are not invisible to me. I see you and you matter." but of course I didn't do or say any of those things. Instead I quickly averted my eyes and moved stealthily past her as though she didn't exist.
The protocol is what it has always been. We turn our head and heart away only to pretend that the faces we see are as meaningless as an empty grey slate. We never let on that we are touched, that we feel, and that we search for our own reflection in the crowd. We languidly move through life with eyes which only see inward, avoiding any need for human connection. Our empty eyes are met with nothingness and we too become one of the invisible.
Monday, October 1, 2007
New Link and more...
I started off saying in my last post that I was curious how others felt about the whole "positive thinking" adage as far as physical illness goes. During my on-line research I mostly found it being applied to cancer patients. There is some thinking that one can visualize their cancer away. My personal thoughts are that this type of suggestion does more harm than good and I found both doctors and nurses who would agree with me.
I do believe that there is a body/mind connection with illness...absolutely. Stress, for example, can cause a host of ailments and can contribute to or exacerbate others. Nobody is advocating being a miserable S.O.B. but neither should someone dictate positivity as a requirement for physical health.
There are some folk who can say what I am trying to say far more eloquently than I can and The Dinosaur Doc is one such person.
Here is his link to an article he wrote entitled, What could be wrong with positive thinking? I would absolutely encourage you to read it. What really got me was the quote at the end of a woman who died of cancer. When we talk about physical illness in our society, we use this battle imagery of people fighting a war. We describe the people who die as having lost their battle and the people who live as heroes who conquered their disease. I feel it is an unfortunate terminology. Everyone who has to deal with a chronic disease is a hero in my book regardless of outcome or outlook.
In our society we take things for granted. We toss around cliches as though they are gospel and don't think twice about, are we really comforting with our words? Are we helping or harming? Are we compassionate or judging? Are we sometimes only really trying to minimize another's pain so we don't have to think of our own? Advice such as "Oh just be positive" or "Get over it" or "Don't dwell on the negative" have very little actual value for either getting physically better or for providing emotional comfort. These sorts of statements only serve to make the recipient feel more isolated and unwilling to share. In addition, it places an unfair burden upon the person who has illness to feel guilty if they cannot feel a certain way or cure themselves with happy thoughts.
The following are two articles written about this topic, the first is by a doctor specializing in treating cancer patients and the second was written by a nurse also helping those who have cancer.
By Jimmie Holland, M.D.
"The Tyranny of Positive Thinking," by Jimmie Holland, M.D., is adapted from the recent book, The Human Side of Cancer, Living with Hope, Coping with Uncertainty, by Holland and Sheldon Lewis. Dr. Holland is a physician/psychiatrist who has counseled people with cancer over the past 24 years at Memorial Sloan-Kettering Cancer Center, in New York City.
The Tyranny of Positive Thinking
As a physician/psychiatrist who has counseled people with cancer over the past 24 years, I have learned a lot about the difficult things people have to cope with when they have any kind of cancer--the negative and frightening meaning of the word cancer (particularly leukemia or lymphoma), and the feeling that people look at them differently. A patient said to me,"I'm not Joe anymore, I'm Joe with cancer." And they must cope with the distress of symptoms of the illness and its treatments, which is enough in itself, but that gets coupled with dealing with the nagging fears about the future.
It began to be clear to me about ten years ago that society was placing another undue and inappropriate burden on patients that seemed to come out of the popular beliefs about the mind-body connection. I would find patients coming in with stories of being told by well meaning friends, "I've read all about this-- if you got cancer, you must have wanted it." Others said, "I've been told that my personality must have caused my cancer and I guess I just didn't handle stress right in my life." Even more distressing was the person who said, "I know I have to be positive all the time and that is the only way to cope with cancer-but it's so hard to do. I know that if I get sad, or scared or upset, I am making my tumor grow faster and I will have shortened my life." These people didn't come up these ideas on their own--they got them from many places in our current culture: books, tabloids, talk shows, and TV. These ideas have come out of interest in the mind-body connection, based on research showing that stress can affect the immune system. The connection is carried further: if stress affects the immune system, and the immune system has something to do with cancer, then stress must cause cancer. This oversimplified pop psychology is typified by an article in the National Enquirer about Jackie Kennedy. The headline was "Stresses in Jackie's Life Led to Her Death From Lymphoma." It is important that people know that research simply does not back up these ideas. The only way that personality becomes a factor in causing cancer is when your personality leads to a life style that puts you at greater risk of cancer, such as smoking and sun exposure, raising the risk of lung cancer and melanoma. Obviously, also important is the fact that your personality leads you to have a rational approach to health, like diet and exercise, and that you followup in a timely way any significant suspicions of cancer with a consultation and treatment.
I felt some one needed to advocate for patients who were having to deal with these negative attitudes and I set out to set the record straight in my recent book about the human side of cancer, outlining what is myth and what is reality, based on what we know from research on the mind-body connection and cancer. Barbara Boggs Sigmund, mayor of Princeton in the 1980s, wrote an Op-Ed piece in The New York Times that I very much admired for her courage to fight back when accosted with these attitudes. She suffered from a melanoma that developed in the back of her eye. In an article titled, "I didn't give myself cancer," she spoke of her rage at self-help books that suggested "I had caused my own cancer out of lack of self-love, a need to be ill, or the wish to die and that consequently, it was up to me to cure it." She spoke against the theory that "cancer cells are internalized anger gone on a field trip all over our bodies" or that "rah-rah-sis-boom-bah, I can beat the odds if I only learn to love myself enough."
The attitude that "you caused your cancer" is very much related to a common psychological method we use in dealing with a catastrophic event or illness, namely we "blame the victim." We look for a rational cause as to why it happened--often concluding that the person must have "brought it on himself." That allows us to say, "Well, it couldn't happen to me--it was his own fault." It produces a false sense of security that we can prevent events that are actually beyond our control.
So rule number one in coping is: "Don't believe you brought cancer on yourself." The research does not show that either personality or how you handle stress in your life raises risk of developing cancer. This is one of the myths that makes coping more difficult these days..
Rule number two is: "Don't believe that you have to have a positive attitude all the time and that sadness or worry will shorten your survival." This tyranny of positive thinking is also related to the "mind over matter" ideas of our society. It is unrealistic that as you cope with nausea, fatigue, and worry and sadness, that you can be positive all the time. Yet, zealous believers in positive thinking may make you feel guilty when you find yourself crying sometimes. There is no evidence that if you do become "down" at times, it affects your tumor. If you are surrounded by the "positive attitude police," tell them to get off your case and be realistic--and offer them The Human Side of Cancer to read to get the facts straight, separating facts from beliefs.
It is also important to remember that our ways of coping with adversity (and illness is just one more example) are as different as our DNA and our fingerprints-each of us copes in a unique way because of our genetic makeup, our temperament, and the events in our lives that shape how we cope and see the world around us. Some people are innately optimistic--the positive thinking idea fits them well-they see the glass as two-thirds full! But just as many others are pessimistic by nature--the glass is only one third full! I recall Ernie who never believed for a moment that his treatment for lymphoma would help--he went through each treatment, telling me that he wouldn't make it. If the positive attitude told the story, Ernie shouldn't have made it. But 10 years later, he is healthy--and just as pessimistic about life as he had always been!
The problem that comes from this paradigm is that if the positive thinker's illness begins to worsen, the immediate response is guilt that "I wasn't strong enough the fight the disease." This is an unfair burden for a person who has coped and with courage and grace. There are many other factors that determine outcome, many that we don't know. I have seen positive copers who didn't make it and negative pessimists who did--which simply says that personality and coping isn't everything.
Surely we need much more research in this area of mind-body, which is developing in the new, small field of psychoneuroimmunology. While stress does affect the immune system, there is no evidence that the blips produced are in the range of those that would affect tumor growth. We will know more in the future, but for now, the studies do not support the myths about psychological causes of cancer and the role of emotions in tumor growth. The mind-body connection is fascinating because people hold such strong beliefs about it. I have come to feel that it is very much like religion. There are people who are "believers" and all the data in the world couldn't shake their faith. "Nonbelievers" simply are those who would not likely believe in the mind-body connection, even if the data were produced.
I strongly advocate that people use whatever beliefs or activities they find helpful - like relaxation, meditation, religious and spiritual approaches. Prayer is likely the most widely used of all interventions to help in coping.
What matters in the long run is that you find a view of illness and way of coping that is comfortable. Whether it involves believing or not believing in the mind-body connection is far less important. We have found that how you cope will likely be similar to how you have coped with major problems in your life. Don't allow family and others to tell you that you are "doing it all wrong," and that you must be more positive and cope in a new way that is foreign to your natural style. The old adage, "Don't change horses in the middle of the stream," is quite apt here. If your way of coping starts not to work, however, it is wise to seek counseling with someone who is familiar with the problems of people with cancer, like the social worker, psychologist, or psychiatrist (when medicine is needed for anxiety or depressed mood or poor sleep.) They can help to reinforce your familiar and proven ways of coping and offer you some ideas about how to approach the problems of illness to make it less upsetting and a little easier for you to deal with them.
Bottom line--identify your own beliefs about the mind-body connection and use them as they are comfortable for you, based on your temperament and your natural ways of coping. Remind your family and your doctor that they are most helpful when they respect your well-honed way of coping and respect your need to express how you feel, even if it isn't positive!
This article is based on the chapter, "The Tyranny of Positive Thinking," in The Human Side of Cancer: Living with Hope, Coping with Uncertainty, by Jimmie C. Holland, M.D., and Sheldon Lewis, published by HarperCollins and available in local bookstores, Barnes & Noble and Amazon.com.
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Being positive
Many people with cancer feel that they should "be positive". You may also be told by other people to "think positive" if you feel low or tearful, or want to talk about a difficult topic like the chance of the cancer being cured or making a will. These comments are not always helpful to you - in fact, often they are very unhelpful.
Some people are afraid that feeling sad or having negative feelings may delay their recovery or make the cancer grow faster, or make it more likely to come back. This is not the case and it is natural to feel frightened, upset and sad when you have been diagnosed with cancer or are having treatment.
Even if you have finished treatment, you will still have times when you feel very sad and worried, and find it difficult to enjoy life.
When you talk to other people who have cancer, even the most positive of them will admit to low times, when they felt depressed and anxious. No one can be positive 100% of the time, so it is important that you do not feel that you must always stay on top of things, when you really want to say that you're finding it tough.
Being positive does not mean feeling happy and cheerful all of the time. It is actually a very positive thing to acknowledge when you feel tired, anxious, depressed or angry.
People with cancer have to deal with issues and situations that are very frightening and very challenging - and more than likely to cause distress and tears.
It takes great courage and strength to face some of these issues. Facing the issues, rather than choosing not to deal with them, is an act of great bravery. Positive thinking is not about avoiding looking at the negatives. There are a great many negative aspects of having cancer and dealing with its treatment:
It can be a life-threatening disease.
You may lose part of your body through surgery.
You may have changes to your body, such as hair loss, due to treatment.
You may lose some independence and freedom.
You may lose friends who cannot face up to your illness.
You may lose important work contacts.
You may have to make big changes to your life.
These are very real losses and will obviously have an effect on you, and the people close to you. They do matter and you have a right to worry about them and be upset by them.
Being positive also means that it is OK to cry and say how you feel when the going gets really tough, it all feels too much, and you wonder when it's all going to end. Tears are a natural response to distress - they may be a very important release for you.
Positive thinking means different things to different people, but generally it is about facing up to the cancer, confronting it and dealing with it. People do this in different ways.
Some will want to take a very active part in their treatment, reading all they can, surfing the internet, talking to lots of people, and becoming a very active participant in their treatment. Some people will be content to let the doctors and nurses give the treatment and trust them to do their best. Some people will want to carry on as normally as possible and avoid thinking about, discussing or talking about the illness and its treatment - they know what is wrong with them but prefer not to talk about it all the time.
There is no one right way to deal with cancer. Each person finds their own best pathway. If you feel tired and sad, it is good to acknowledge that and not feel that you have to change it. It is important to remember that all feelings and thoughts pass, and you will feel better at some time in the future.
Recently, many people have tried to find out whether positive thinking can make treatment more successful or prevent cancer coming back. This is a very difficult issue to research and is still not well understood. It is not known whether positive thinking directly affects the growth of cancer.
Although the development of cancer may be influenced by our thoughts, feelings and attitude, it is also influenced by many other things such as our environment, our diet, and our genetic and physical make-up.
It is important to remember this, because if you believe that you need to be positive to get rid of the cancer, you may think, if it comes back, that it is your fault because you were not positive enough.
Other people can also make you feel worse by saying that if you fight hard enough you can overcome cancer. If your cancer does come back or cannot be cured, it is not your fault: it is because cancer is a very complicated illness and modern treatments cannot cure all cancers.
Some research studies have shown that people who wanted to fight their cancer were more likely to be cured, or live longer, than people who did not feel so positive. This is possibly because people who can deal with cancer in a direct way are able to take more advantage of what is on offer in terms of both conventional and complementary therapies. However, this is not the same as saying that 'positive thinking' is a necessary part of your treatment for cancer.
It is important that you are able to talk honestly about how you feel, and cry if you need to. This can help to release tension and stress and can even bring you closer to the person you are talking to.
If you find it hard to talk honestly to people in your family it may help to find someone from outside to talk to, such as one of the Cancerbackup nurses, a counsellor, or a cancer support organisation
I do believe that there is a body/mind connection with illness...absolutely. Stress, for example, can cause a host of ailments and can contribute to or exacerbate others. Nobody is advocating being a miserable S.O.B. but neither should someone dictate positivity as a requirement for physical health.
There are some folk who can say what I am trying to say far more eloquently than I can and The Dinosaur Doc is one such person.
Here is his link to an article he wrote entitled, What could be wrong with positive thinking? I would absolutely encourage you to read it. What really got me was the quote at the end of a woman who died of cancer. When we talk about physical illness in our society, we use this battle imagery of people fighting a war. We describe the people who die as having lost their battle and the people who live as heroes who conquered their disease. I feel it is an unfortunate terminology. Everyone who has to deal with a chronic disease is a hero in my book regardless of outcome or outlook.
In our society we take things for granted. We toss around cliches as though they are gospel and don't think twice about, are we really comforting with our words? Are we helping or harming? Are we compassionate or judging? Are we sometimes only really trying to minimize another's pain so we don't have to think of our own? Advice such as "Oh just be positive" or "Get over it" or "Don't dwell on the negative" have very little actual value for either getting physically better or for providing emotional comfort. These sorts of statements only serve to make the recipient feel more isolated and unwilling to share. In addition, it places an unfair burden upon the person who has illness to feel guilty if they cannot feel a certain way or cure themselves with happy thoughts.
The following are two articles written about this topic, the first is by a doctor specializing in treating cancer patients and the second was written by a nurse also helping those who have cancer.
By Jimmie Holland, M.D.
"The Tyranny of Positive Thinking," by Jimmie Holland, M.D., is adapted from the recent book, The Human Side of Cancer, Living with Hope, Coping with Uncertainty, by Holland and Sheldon Lewis. Dr. Holland is a physician/psychiatrist who has counseled people with cancer over the past 24 years at Memorial Sloan-Kettering Cancer Center, in New York City.
The Tyranny of Positive Thinking
As a physician/psychiatrist who has counseled people with cancer over the past 24 years, I have learned a lot about the difficult things people have to cope with when they have any kind of cancer--the negative and frightening meaning of the word cancer (particularly leukemia or lymphoma), and the feeling that people look at them differently. A patient said to me,"I'm not Joe anymore, I'm Joe with cancer." And they must cope with the distress of symptoms of the illness and its treatments, which is enough in itself, but that gets coupled with dealing with the nagging fears about the future.
It began to be clear to me about ten years ago that society was placing another undue and inappropriate burden on patients that seemed to come out of the popular beliefs about the mind-body connection. I would find patients coming in with stories of being told by well meaning friends, "I've read all about this-- if you got cancer, you must have wanted it." Others said, "I've been told that my personality must have caused my cancer and I guess I just didn't handle stress right in my life." Even more distressing was the person who said, "I know I have to be positive all the time and that is the only way to cope with cancer-but it's so hard to do. I know that if I get sad, or scared or upset, I am making my tumor grow faster and I will have shortened my life." These people didn't come up these ideas on their own--they got them from many places in our current culture: books, tabloids, talk shows, and TV. These ideas have come out of interest in the mind-body connection, based on research showing that stress can affect the immune system. The connection is carried further: if stress affects the immune system, and the immune system has something to do with cancer, then stress must cause cancer. This oversimplified pop psychology is typified by an article in the National Enquirer about Jackie Kennedy. The headline was "Stresses in Jackie's Life Led to Her Death From Lymphoma." It is important that people know that research simply does not back up these ideas. The only way that personality becomes a factor in causing cancer is when your personality leads to a life style that puts you at greater risk of cancer, such as smoking and sun exposure, raising the risk of lung cancer and melanoma. Obviously, also important is the fact that your personality leads you to have a rational approach to health, like diet and exercise, and that you followup in a timely way any significant suspicions of cancer with a consultation and treatment.
I felt some one needed to advocate for patients who were having to deal with these negative attitudes and I set out to set the record straight in my recent book about the human side of cancer, outlining what is myth and what is reality, based on what we know from research on the mind-body connection and cancer. Barbara Boggs Sigmund, mayor of Princeton in the 1980s, wrote an Op-Ed piece in The New York Times that I very much admired for her courage to fight back when accosted with these attitudes. She suffered from a melanoma that developed in the back of her eye. In an article titled, "I didn't give myself cancer," she spoke of her rage at self-help books that suggested "I had caused my own cancer out of lack of self-love, a need to be ill, or the wish to die and that consequently, it was up to me to cure it." She spoke against the theory that "cancer cells are internalized anger gone on a field trip all over our bodies" or that "rah-rah-sis-boom-bah, I can beat the odds if I only learn to love myself enough."
The attitude that "you caused your cancer" is very much related to a common psychological method we use in dealing with a catastrophic event or illness, namely we "blame the victim." We look for a rational cause as to why it happened--often concluding that the person must have "brought it on himself." That allows us to say, "Well, it couldn't happen to me--it was his own fault." It produces a false sense of security that we can prevent events that are actually beyond our control.
So rule number one in coping is: "Don't believe you brought cancer on yourself." The research does not show that either personality or how you handle stress in your life raises risk of developing cancer. This is one of the myths that makes coping more difficult these days..
Rule number two is: "Don't believe that you have to have a positive attitude all the time and that sadness or worry will shorten your survival." This tyranny of positive thinking is also related to the "mind over matter" ideas of our society. It is unrealistic that as you cope with nausea, fatigue, and worry and sadness, that you can be positive all the time. Yet, zealous believers in positive thinking may make you feel guilty when you find yourself crying sometimes. There is no evidence that if you do become "down" at times, it affects your tumor. If you are surrounded by the "positive attitude police," tell them to get off your case and be realistic--and offer them The Human Side of Cancer to read to get the facts straight, separating facts from beliefs.
It is also important to remember that our ways of coping with adversity (and illness is just one more example) are as different as our DNA and our fingerprints-each of us copes in a unique way because of our genetic makeup, our temperament, and the events in our lives that shape how we cope and see the world around us. Some people are innately optimistic--the positive thinking idea fits them well-they see the glass as two-thirds full! But just as many others are pessimistic by nature--the glass is only one third full! I recall Ernie who never believed for a moment that his treatment for lymphoma would help--he went through each treatment, telling me that he wouldn't make it. If the positive attitude told the story, Ernie shouldn't have made it. But 10 years later, he is healthy--and just as pessimistic about life as he had always been!
The problem that comes from this paradigm is that if the positive thinker's illness begins to worsen, the immediate response is guilt that "I wasn't strong enough the fight the disease." This is an unfair burden for a person who has coped and with courage and grace. There are many other factors that determine outcome, many that we don't know. I have seen positive copers who didn't make it and negative pessimists who did--which simply says that personality and coping isn't everything.
Surely we need much more research in this area of mind-body, which is developing in the new, small field of psychoneuroimmunology. While stress does affect the immune system, there is no evidence that the blips produced are in the range of those that would affect tumor growth. We will know more in the future, but for now, the studies do not support the myths about psychological causes of cancer and the role of emotions in tumor growth. The mind-body connection is fascinating because people hold such strong beliefs about it. I have come to feel that it is very much like religion. There are people who are "believers" and all the data in the world couldn't shake their faith. "Nonbelievers" simply are those who would not likely believe in the mind-body connection, even if the data were produced.
I strongly advocate that people use whatever beliefs or activities they find helpful - like relaxation, meditation, religious and spiritual approaches. Prayer is likely the most widely used of all interventions to help in coping.
What matters in the long run is that you find a view of illness and way of coping that is comfortable. Whether it involves believing or not believing in the mind-body connection is far less important. We have found that how you cope will likely be similar to how you have coped with major problems in your life. Don't allow family and others to tell you that you are "doing it all wrong," and that you must be more positive and cope in a new way that is foreign to your natural style. The old adage, "Don't change horses in the middle of the stream," is quite apt here. If your way of coping starts not to work, however, it is wise to seek counseling with someone who is familiar with the problems of people with cancer, like the social worker, psychologist, or psychiatrist (when medicine is needed for anxiety or depressed mood or poor sleep.) They can help to reinforce your familiar and proven ways of coping and offer you some ideas about how to approach the problems of illness to make it less upsetting and a little easier for you to deal with them.
Bottom line--identify your own beliefs about the mind-body connection and use them as they are comfortable for you, based on your temperament and your natural ways of coping. Remind your family and your doctor that they are most helpful when they respect your well-honed way of coping and respect your need to express how you feel, even if it isn't positive!
This article is based on the chapter, "The Tyranny of Positive Thinking," in The Human Side of Cancer: Living with Hope, Coping with Uncertainty, by Jimmie C. Holland, M.D., and Sheldon Lewis, published by HarperCollins and available in local bookstores, Barnes & Noble and Amazon.com.
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Being positive
Many people with cancer feel that they should "be positive". You may also be told by other people to "think positive" if you feel low or tearful, or want to talk about a difficult topic like the chance of the cancer being cured or making a will. These comments are not always helpful to you - in fact, often they are very unhelpful.
Some people are afraid that feeling sad or having negative feelings may delay their recovery or make the cancer grow faster, or make it more likely to come back. This is not the case and it is natural to feel frightened, upset and sad when you have been diagnosed with cancer or are having treatment.
Even if you have finished treatment, you will still have times when you feel very sad and worried, and find it difficult to enjoy life.
When you talk to other people who have cancer, even the most positive of them will admit to low times, when they felt depressed and anxious. No one can be positive 100% of the time, so it is important that you do not feel that you must always stay on top of things, when you really want to say that you're finding it tough.
Being positive does not mean feeling happy and cheerful all of the time. It is actually a very positive thing to acknowledge when you feel tired, anxious, depressed or angry.
People with cancer have to deal with issues and situations that are very frightening and very challenging - and more than likely to cause distress and tears.
It takes great courage and strength to face some of these issues. Facing the issues, rather than choosing not to deal with them, is an act of great bravery. Positive thinking is not about avoiding looking at the negatives. There are a great many negative aspects of having cancer and dealing with its treatment:
It can be a life-threatening disease.
You may lose part of your body through surgery.
You may have changes to your body, such as hair loss, due to treatment.
You may lose some independence and freedom.
You may lose friends who cannot face up to your illness.
You may lose important work contacts.
You may have to make big changes to your life.
These are very real losses and will obviously have an effect on you, and the people close to you. They do matter and you have a right to worry about them and be upset by them.
Being positive also means that it is OK to cry and say how you feel when the going gets really tough, it all feels too much, and you wonder when it's all going to end. Tears are a natural response to distress - they may be a very important release for you.
Positive thinking means different things to different people, but generally it is about facing up to the cancer, confronting it and dealing with it. People do this in different ways.
Some will want to take a very active part in their treatment, reading all they can, surfing the internet, talking to lots of people, and becoming a very active participant in their treatment. Some people will be content to let the doctors and nurses give the treatment and trust them to do their best. Some people will want to carry on as normally as possible and avoid thinking about, discussing or talking about the illness and its treatment - they know what is wrong with them but prefer not to talk about it all the time.
There is no one right way to deal with cancer. Each person finds their own best pathway. If you feel tired and sad, it is good to acknowledge that and not feel that you have to change it. It is important to remember that all feelings and thoughts pass, and you will feel better at some time in the future.
Recently, many people have tried to find out whether positive thinking can make treatment more successful or prevent cancer coming back. This is a very difficult issue to research and is still not well understood. It is not known whether positive thinking directly affects the growth of cancer.
Although the development of cancer may be influenced by our thoughts, feelings and attitude, it is also influenced by many other things such as our environment, our diet, and our genetic and physical make-up.
It is important to remember this, because if you believe that you need to be positive to get rid of the cancer, you may think, if it comes back, that it is your fault because you were not positive enough.
Other people can also make you feel worse by saying that if you fight hard enough you can overcome cancer. If your cancer does come back or cannot be cured, it is not your fault: it is because cancer is a very complicated illness and modern treatments cannot cure all cancers.
Some research studies have shown that people who wanted to fight their cancer were more likely to be cured, or live longer, than people who did not feel so positive. This is possibly because people who can deal with cancer in a direct way are able to take more advantage of what is on offer in terms of both conventional and complementary therapies. However, this is not the same as saying that 'positive thinking' is a necessary part of your treatment for cancer.
It is important that you are able to talk honestly about how you feel, and cry if you need to. This can help to release tension and stress and can even bring you closer to the person you are talking to.
If you find it hard to talk honestly to people in your family it may help to find someone from outside to talk to, such as one of the Cancerbackup nurses, a counsellor, or a cancer support organisation
Comments from the Dinosaur doc's Blog
I will give you guys a link to the Dinosaur Doc in my next post. You simply must read his post about What is Wrong with Positive Thinking.
The comments alone for this post were so right on that I had to take some of the information provided as I don't want to lose it.
One commenter on his blog posted this about studies done about positive thinking and the impact upon physical illness and survival:
"In a 2004 study by Penelope Schofield and her colleagues at Peter MacCallum Cancer Centre in Melbourne, Australia that involved 204 lung cancer patients, there was no evidence that a high level of optimism prior to treatment enhanced survival. However, the study underscored the importance of optimism in relation to quality of life. Those patients who were more optimistic were less depressed and more likely to adhere to treatment.
Another new body of work goes beyond just looking at a positive attitude and is examining its biological underpinnings by studying immune function and stress hormones. So far, the findings are similar to the Schofield study, indicating that successful coping is not necessarily about having a positive outlook or striving for a cheery disposition. Rather, coping in a way familiar to you (which could involve anything from stress relief to exercise) can prove beneficial. In fact, if someone is a natural curmudgeon, then continuing to be a curmudgeon may be the very thing to help lower stress, bolster the immune system and, possibly, influence the success of the cancer treatment".1
The article "The Challenge of the Positive Attitude" was from the site: http://www.thewellnesscommunity.org
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The following was another comment by an anonymous poster. All I can say is right on sister!
"I believe it adds insult to injury to tell a person with a serious or chronic problem to just think 'Positive'! As if the person needs one more platitude."
What it reminds me of is when older men admonish a young woman to always smile as though it is owed to them. It is condescending and rude.
From the author of Nickle and Dimed, Barbara Ehrenreich wrote an article about the positivity cult so entrenched in our society. Having survived breast cancer, she was more than annoyed by the positivity entourage.
Here is a link to her article.
And lastly here is a small passage from that article which really resonated with me.
From Pathologies of Hope by by Barbara Ehrenreich
"But what is truly sinister about the positivity cult is that it seems to reduce our tolerance of other people's suffering. Far from being a "culture of complaint" that upholds "victims," ours has become "less and less tolerant of people having a bad day or a bad year," according to Barbara Held, professor of psychology at Bowdoin College and a leading critic of positive psychology. If no one will listen to my problems, I won't listen to theirs: "no whining," as the popular bumper stickers and wall plaques warn. Thus the cult acquires a viral-like reproductive energy, creating an empathy deficit that pushes evermore people into a harsh insistence on positivity in others."
Exactly.
The comments alone for this post were so right on that I had to take some of the information provided as I don't want to lose it.
One commenter on his blog posted this about studies done about positive thinking and the impact upon physical illness and survival:
"In a 2004 study by Penelope Schofield and her colleagues at Peter MacCallum Cancer Centre in Melbourne, Australia that involved 204 lung cancer patients, there was no evidence that a high level of optimism prior to treatment enhanced survival. However, the study underscored the importance of optimism in relation to quality of life. Those patients who were more optimistic were less depressed and more likely to adhere to treatment.
Another new body of work goes beyond just looking at a positive attitude and is examining its biological underpinnings by studying immune function and stress hormones. So far, the findings are similar to the Schofield study, indicating that successful coping is not necessarily about having a positive outlook or striving for a cheery disposition. Rather, coping in a way familiar to you (which could involve anything from stress relief to exercise) can prove beneficial. In fact, if someone is a natural curmudgeon, then continuing to be a curmudgeon may be the very thing to help lower stress, bolster the immune system and, possibly, influence the success of the cancer treatment".1
The article "The Challenge of the Positive Attitude" was from the site: http://www.thewellnesscommunity.org
-------------------------------------------------------------------------
The following was another comment by an anonymous poster. All I can say is right on sister!
"I believe it adds insult to injury to tell a person with a serious or chronic problem to just think 'Positive'! As if the person needs one more platitude."
What it reminds me of is when older men admonish a young woman to always smile as though it is owed to them. It is condescending and rude.
From the author of Nickle and Dimed, Barbara Ehrenreich wrote an article about the positivity cult so entrenched in our society. Having survived breast cancer, she was more than annoyed by the positivity entourage.
Here is a link to her article.
And lastly here is a small passage from that article which really resonated with me.
From Pathologies of Hope by by Barbara Ehrenreich
"But what is truly sinister about the positivity cult is that it seems to reduce our tolerance of other people's suffering. Far from being a "culture of complaint" that upholds "victims," ours has become "less and less tolerant of people having a bad day or a bad year," according to Barbara Held, professor of psychology at Bowdoin College and a leading critic of positive psychology. If no one will listen to my problems, I won't listen to theirs: "no whining," as the popular bumper stickers and wall plaques warn. Thus the cult acquires a viral-like reproductive energy, creating an empathy deficit that pushes evermore people into a harsh insistence on positivity in others."
Exactly.
Trying to make sense of it all
I was doing a bit of research to find what others thought of the whole "positive thinking" phenomena with respect to physical illness.
Before I share some of my findings let me preface this with, believe it or not I am a positive person. If I wasn't, I surely would not have survived my life thus far. I was raised by a schizophrenic mother in the inner city, lost my father when I was four to alcoholism, I lived in poverty, was homeless, abused, neglected, and this was all when I was but a child. My teen and adult years...well those are some other stories. What I am trying to say is, Multiple Sclerosis is just the tip of the iceberg for me. I had had to survive many things as I am sure you all have as well. Everyone has their stories to tell.
At any point in my life I could have given up, settled into poverty, crime, or even suicide. But I didn't. Sorry for this abbreviated version of things. It certainly is better to show than simply tell but I have a point I want to get to believe it or not. What helped me most to survive some extreme situations wasn't so much this cliched "positive" crap but rather...hope. When you lose hope you are done for.
I feel I am much like Houdini. Let me explain. As we all know Houdini was a famous magician capable of amazing escapism and daring feats. What you may not know about the man is that he had an interest in true magic, and particularly the supernatural. In those days it was common for people to do the whole seance thing and make "spirits" come out of the woodwork. Well Houdini made it his mission to debunk these frauds. He would come and disrupt the illusion. Whereas his magic was acceptable because people knew it was, indeed, an illusion, he didn't like it when people were passing off illusion as truth. And I don't like it either.
Yet part of Houdini wanted to believe. It made him so angry to see these charlatans trying to give people hope of some sort of an after life when all they were showing was an illusion. They were making a mockery of people's hopes.
I know this is a lot of jumping around with my topics here but I promise to tie everything together.
When I found out my son had autism, it was as though the crystal ball people had been recycled from beyond. All of a sudden you are rushed by a crowd with miracle cures. Well all ya gotta do is sit on a golden egg while beating your breast and eat these special granola bars. And by the way...I can sell you the special golden egg and granola bars you will happen to need. I became so sick and tired of hearing about the special vitamins or exercises or oxygen therapy, or riding dolphins or eating herbs to cure autism. Excuse my french but give me an F***ing break. The thing was...there was sometimes good and beneficial treatments but you lost sight of them because of all the crazy cure hooplah. When you toss out everything...there just might be something good that you miss along with all the quackery.
So here I am today. I am both a realist but hopeful too. I do wish to believe in some magic if you want to call it that. Oh boy wait until I do start to talk about the synchronicities. I have been called a hopeless dreamer, a pollyanna, and also a harsh cold realist in the same breath. Truth is...I am both.
And part of dichotomous me would love to believe in my power to change the world with my own thoughts. I would love to believe in miracles and magic. I would love to believe that I have so much control. The other part of me is angry at illusions and my willingness to ever entertain them.
Now back to the notion of "positive thinking." What it is not. Being positive doesn't mean you get to be delusional. Being hopeful and delusional are two different entities. Living with my mother and her multitudes of delusions made me loathe illusion. I won't put up with it. I need the truth of my reality.
But here's the catch...we don't always know what the truth is. I don't have a crystal ball. Nobody does. I don't know what the future will bring. Many outcomes are possible.
We just don't know and the not knowing can be the basis for crazy making. We all have to blindly leap into the future. Nobody knows their fate...not you...not me...maybe not even God. And if he/she knows we are certainly not privy to that information.
So we have to make do with now and sorting through the chaos to find things which help and make sense. This is where I am right now with all this. I am trying to process how I feel. I know I am grieving some but exactly what am I grieving for? What have I lost and what will I lose in the future? I know I have to accept but what part of this do I accept? I know I have to move forward and act and do things which will help me to overcome but what does that look like exactly? Where does my foot land as I take that first step? Where am I going and why?
It is all a process and this is just the beginning. It is what we humans have to do to survive. You pick yourself up and begin again. And again....and again and....
Before I share some of my findings let me preface this with, believe it or not I am a positive person. If I wasn't, I surely would not have survived my life thus far. I was raised by a schizophrenic mother in the inner city, lost my father when I was four to alcoholism, I lived in poverty, was homeless, abused, neglected, and this was all when I was but a child. My teen and adult years...well those are some other stories. What I am trying to say is, Multiple Sclerosis is just the tip of the iceberg for me. I had had to survive many things as I am sure you all have as well. Everyone has their stories to tell.
At any point in my life I could have given up, settled into poverty, crime, or even suicide. But I didn't. Sorry for this abbreviated version of things. It certainly is better to show than simply tell but I have a point I want to get to believe it or not. What helped me most to survive some extreme situations wasn't so much this cliched "positive" crap but rather...hope. When you lose hope you are done for.
I feel I am much like Houdini. Let me explain. As we all know Houdini was a famous magician capable of amazing escapism and daring feats. What you may not know about the man is that he had an interest in true magic, and particularly the supernatural. In those days it was common for people to do the whole seance thing and make "spirits" come out of the woodwork. Well Houdini made it his mission to debunk these frauds. He would come and disrupt the illusion. Whereas his magic was acceptable because people knew it was, indeed, an illusion, he didn't like it when people were passing off illusion as truth. And I don't like it either.
Yet part of Houdini wanted to believe. It made him so angry to see these charlatans trying to give people hope of some sort of an after life when all they were showing was an illusion. They were making a mockery of people's hopes.
I know this is a lot of jumping around with my topics here but I promise to tie everything together.
When I found out my son had autism, it was as though the crystal ball people had been recycled from beyond. All of a sudden you are rushed by a crowd with miracle cures. Well all ya gotta do is sit on a golden egg while beating your breast and eat these special granola bars. And by the way...I can sell you the special golden egg and granola bars you will happen to need. I became so sick and tired of hearing about the special vitamins or exercises or oxygen therapy, or riding dolphins or eating herbs to cure autism. Excuse my french but give me an F***ing break. The thing was...there was sometimes good and beneficial treatments but you lost sight of them because of all the crazy cure hooplah. When you toss out everything...there just might be something good that you miss along with all the quackery.
So here I am today. I am both a realist but hopeful too. I do wish to believe in some magic if you want to call it that. Oh boy wait until I do start to talk about the synchronicities. I have been called a hopeless dreamer, a pollyanna, and also a harsh cold realist in the same breath. Truth is...I am both.
And part of dichotomous me would love to believe in my power to change the world with my own thoughts. I would love to believe in miracles and magic. I would love to believe that I have so much control. The other part of me is angry at illusions and my willingness to ever entertain them.
Now back to the notion of "positive thinking." What it is not. Being positive doesn't mean you get to be delusional. Being hopeful and delusional are two different entities. Living with my mother and her multitudes of delusions made me loathe illusion. I won't put up with it. I need the truth of my reality.
But here's the catch...we don't always know what the truth is. I don't have a crystal ball. Nobody does. I don't know what the future will bring. Many outcomes are possible.
We just don't know and the not knowing can be the basis for crazy making. We all have to blindly leap into the future. Nobody knows their fate...not you...not me...maybe not even God. And if he/she knows we are certainly not privy to that information.
So we have to make do with now and sorting through the chaos to find things which help and make sense. This is where I am right now with all this. I am trying to process how I feel. I know I am grieving some but exactly what am I grieving for? What have I lost and what will I lose in the future? I know I have to accept but what part of this do I accept? I know I have to move forward and act and do things which will help me to overcome but what does that look like exactly? Where does my foot land as I take that first step? Where am I going and why?
It is all a process and this is just the beginning. It is what we humans have to do to survive. You pick yourself up and begin again. And again....and again and....
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