Saturday, March 3, 2012

Facebook, Atheism and THINK FOR YOURSELF!

Too many thoughts going through my mind today.  Damn you, Facebook! haha  No, I can't say that since I am finding pages all the time that coincide with my way of feeling and thinking and I believe it is strengthening me as a person.

After getting on my soapbox about MS and how driving is too serious a responsibility to take lightly, I ran across many posts by the Atheist pages of which I am a member.  I can REALLY go on and on about these posts, as I'm sure my readers have already come to realize.
I saw this picture a few months ago but when I saw it today, my mind started firing off in a few directions.  First, I'll include the comment I made on Facebook:

"One of the biggest problems I have with this picture (aside from not giving them FOOD) is that Christians believe that when you have knowledge of Jesus and choose to reject him, then you are damning yourself for all eternity.  But if you live without such knowledge, you are exempt from hell because you 'didn't know any better.'  So why take a bible to a place that was fine without your 'spiritual' interference?  Help them in a productive way, not in the way YOU think they need."

My comment makes absolute sense, doesn't it?  I have family that were missionaries for quite a while but now that I have more understanding of this, I find it such a horrible, HORRIBLE thing to do!  How dare they take their religion/faith/way of thinking to those who have lived for centuries without being exposed to it?  They were FINE without you!!!  And if you truly believe what your faith tells you, you may have just damned them all to eternal suffering.  Good job.. not that I buy into that way of thinking but since missionaries do, they should be ashamed!
Which brings me to picture #2 of the day.  I also posted a comment on Facebook and here is what I wrote:

"I'm sure they would say something in the neighborhood of people not understanding god's plan and who are we to question his wisdom?  It makes me shake my head and wonder how anyone could follow anything so blindly."

It just makes me angry and upset at anyone who can believe in a god or anyone who could be so damn heartless as to ALLOW suffering when it is, supposedly, in his power to stop it from happening.  FUCK THAT!!!  god is love?  Don't make me laugh.  god is ignorance of thought.  god is peoples' way of saying "we probably deserved it" when they know it's just not right.  Babies die every day.  People of all ages are afflicted with cancer or chronic illnesses.  We suffer.. why?  Because that's how life goes sometimes.  Good people suffer.  Bad people suffer.  But there is no god to comfort you.  When you say you "hear god" talking to you.. honestly, it's your own subconscious mind telling you what you probably already knew but rather than giving yourself credit for figuring it out, people say "god helped me" or "god told me."  BULLSHIT!  Take credit for your accomplishments and accept your failures.  It was all YOU.  Ugh.  Enough for one night.. I'm getting a migraine.

MS.. take responsibility!

I read something on Facebook today.  A few months ago, I joined a page called "I Hate Multiple Sclerosis" and throughout the day people with MS, caregivers, family or friends post questions for members to respond to and/or offer suggestions and give support.  Even though I've had MS for a little over two decades, I've learned quite a bit from this page.  Everyone's experience is his or her own, yet there is a common bond that connects us.  We are each living with a chronic disease that does all it can to take away our pride and independence while we do our best to find a new place of normalcy for our lives in which we feel we can thrive.
When my MS "journey" began, it mostly affected the left side of my body and was told by my then-neurologist that it would, most likely, stay on that side since MS tends to do that.  Umm, wrong!  Within a couple years, the MS jumped to the other side of my body, which meant I couldn't always rely on my driving leg/foot to respond.  Once my right leg didn't feel too reliable, I chose to stop driving.  I'm sure I could have driven but just the thought of possibly hurting someone because of my stubbornness to not hang the keys up was too much for me to even imagine.  When I'm on the road, everyone around me becomes my responsibility and take it very seriously.  I was probably 23 the first time I had to give up driving and it lasted for almost an entire year, even though I wasn't sure if I would ever regain enough use of my right leg to feel the freedom of driving my '82 Firebird again.  And believe me.. I LOVED DRIVING MY SPORTS CAR!

Over the years, I've had to stop driving many times.  I would rather inconvenience people (mostly Mom and Dad) to pick me up than drive my car, which would be a death mobile in my condition.  Having MS really did force me to mature very quickly and put life into perspective, even if the first few years were plagued with deep depression and self-hate.  How much more would I despise myself if I hurt someone because I couldn't stop my car?  To me, there's just no excuse to drive when I'm unsure of myself.

On the I Hate MS page today, a gentleman posted that he had been in a traffic accident a few years back due to his inability to distinguish between the brake and gas pedal.  No one was hurt but the damage to both vehicles had been quite extensive.  Last year, the same thing had happened to him twice (not being able to hit the right pedal) and even though it had not resulted in an accident I have to question how he would have considered it an "accident," knowing his MS was active and was not allowing him to react quickly.  Knowing your limitations is essential when you're dealing with MS or a number of other conditions that could impair your thinking and reaction time. I have to say that when I read his post, I was more angry than I want to admit but many of the responses, aside from mine, stated how they, too, choose to stop driving when MS rears its' ugly head and for this, I'm very proud.
Having MS forces us to be strong in a way we probably never imagined.. at least this is how it has been for me.   Knowing I'm strong enough to face the reality that is my life gives me a wonderful sense of accomplishment, even if others may see it as surrendering to a life less adequate than I would have wished for myself years ago.  I am still me.. just slightly revamped and more understanding of peoples' limitations and fears.  I just hope others with MS will not view giving things up as a weakness, but rather a humongous strength that they were able to face up to their new reality and find peace within themselves that they are doing the best they can.

Friday, March 2, 2012

March is Multiple Sclerosis Awareness Month

Yesterday (Thursday) was the first day I left my house since last Friday.  I hadn't planned on being home so much, but it tends to happen with me far more than I would have thought possible.  You'd think I'd be bored all alone at home.. but was I really alone?  Nah, not at all.  I'm always in the company of my sweet little babies who can't seem to get enough of their mommy's love and me of theirs.  But beyond having my kitties with me, I'm so comfortable with myself, my thoughts, my very simple life, that I'm able to be home for days on end and not go stir-crazy.
While on Facebook yesterday afternoon, I learned that this is Multiple Sclerosis Awareness Month.  I'm not sure if I knew this before or not, but now it's written on my calendar so I will have no trouble remembering MS month ever again.  And honestly with as many people who unfortunately have MS, everyone needs to be more informed.
I've been thinking lately how much my life has changed due to my having MS. When I was in high school, my dream was to be an English teacher and hopefully inspire young people to love writing.  My favorite time of the year was when my English teacher would announce we would be doing some creative writing.  I'm sure my face lit up every time while most of the class broke into groans of disapproval.  Writing gave me a chance to express myself in a way that I felt I wasn't allowed to do on most other occasions and I loved it.
For those who do not know me from a young age, as strange as it may sound, I used to be shy.  And I mean PAINFULLY shy.  If I could have been invisible while in high school, it would have made my life easier.  I was overweight, had terribly curly hair (the beauty industry had not yet understood that "white" people have natural curls and need products all their own!), was already large breasted, hated my name (Lucy is my nickname) and all this led to a deep insecurity in most aspects of who I was.. except in writing.  Writing is when I would come alive.

When I was diagnosed with MS, my life had already been falling apart since I was barely able to walk, couldn't see too well and didn't know who I was or what the future would bring.  While others, at the age of 21, enjoy "partying" or other young person activities, I was having numerous MRI's, spinal taps, all kinds of doctor's appointments and learning what life would be like if I had to live it out in a wheelchair.  Needless to say, becoming a teacher was put on the back burner and is no longer a possibility for me with the cognitive issues I have from the MS.  But yes, I'm OK with this.  Shit happens and life does go on.
A couple years after my diagnosis, Duran Duran, one of my favorite all-time groups, released a song called "Ordinary World."  This song became my lifeline as the words spoke to me in a way I hadn't thought until the moment I really listened to Simon LeBon's words of wisdom.  Here are the parts that made my life that much easier.. and Simon, thank you!

What has happened to it all?
Crazy, some are saying
Where is the life that I recognize?
Gone away

But I won't cry for yesterday
There's an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

So you see, I no longer look for the life I had once before because it would be an impossible dream to ever have again.  I've found my new "ordinary" and it's fine.  Yes, there are times when I want to scream at the top of my lungs at how unfair life can be and how much I fucking HATE my legs that don't want to walk too much and my hands that won't respond when I merely need to sign my name.. but I've learned to survive and honestly, I feel I do more than just survive.  I live.  And being alive is truly a great thing.

Wednesday, February 29, 2012

It's just another day in paradise

Today started out almost too ugly for words.  I'm sure others have had the experience where we have a dream (or nightmare) which feels so real that once we awaken, we're not sure what is fantasy or reality.  I had one of those last night that I would put in the category of a very VERY bad dream.

Through the years I have grown almost used to doing a quick "leg check" before sitting up and getting out of bed.  Too many times when I try to stand up, my legs have given out, causing me to crash to the floor.  Once I fall down my MS kicks into full gear and there is no way I can get back up, so I find myself crawling back to bed, the bathroom, or wherever it was that I was headed.  I can't even begin to count how many times this has happened but, luckily, not too often in the recent past.

In my dream last night, my legs were not responding and I was forced to call my dad so I could borrow the walker he used over a decade ago when he had a hip replacement.  But even with the walker, I was barely able to move too well, which, unfortunately, isn't too far-fetched since I've lived through that experience more than a few times.  Those are some of my worst memories!  Trying to make my legs move when they're fighting me every step of the way.  Appearing very "challenged" in all of my movements since nothing looks smooth or easy or deliberate and not knowing if it will ever get back to normal anymore.  It's terribly devastating and I fear the next time it will happen, yet I push it so far back in my mind that I am able to smile every day of my life.

When I awoke this morning my legs were terribly numb and my right leg and foot were barely responding when I wanted them to move, causing me to be too afraid to get out of bed for close to three hours, until around noon.  The wind was howling outside my window, as it was in my dream, which made it all seem that much more real.  What was happening?  Did I need to call Dad for that damned walker?  What should I do?  And all along, my three little kitties lay around me, looking at me as if to reassure me that everything was fine and they loved me, no matter what the day would bring.  With tears in my eyes I slowly tried to move my legs, that felt like blocks of cement, and put them over the side of the bed.. and breathed a sigh of relief.  Yes, my legs were numb and my feet hurt more than usual but I was fine.. or as fine as I could be.  It had all been a bad dream.. or more like a fucking nightmare from hell.  Because that's what MS is.. a fucking nightmare.  But today is just another day in paradise, as I say to my mom when I'm having a day where the MS is kicking my ass a little more than other days.

One thing I have learned is that everyone suffers and I do not compare what I go through to what others have in their lives.  Even those who are healthy have pain in other aspects of their lives.  It could be a bad marriage, troubled children, many deaths in the family, any number of things!  I happen to have MS and I hate it, but that's life.. or at least that's MY life.  Sometimes I get angry and bitter about it, I freely admit to this but in the end, I know I am a very fortunate woman to have so many loved ones, my perfect little kitties and to be Bolivian!  Yeah, I'll have to mention that part in more detail here soon because to know me is to know how much I LOVE being Bolivian.  Life is what you make of it and I refuse to let MS beat me.. yet I also refuse to say the cliche line so many use "I have MS but it doesn't have me."  Umm, sure it does.  There are times when the MS has me by my throat and I can barely breathe.  MS is my very unwanted life partner.  It's my bitch in life and if I could get rid of this bitch, I would.. but I can't, so I have had to make room for it and go on with life.  As I said, it's just another day in paradise.. and it always will be.

Tuesday, February 28, 2012

your god made me an Atheist.. Ta dah!!!

From the moment I began keeping this blog I have been terribly excited about it so when I was at my parents' house after my third blog entry, I was enthusiastic for them to read it.  My mom hadn't been feeling too well which was why Dad was upstairs making dinner for us while Mom and I went to the computer to see my blog.  To be honest, I was so eager to share my writings that it hadn't crossed my mind how they would feel towards my post about Atheism but then again.. I'm an Atheist, they know it, so be it!

When my mom finished reading "My Steps to Atheism," I could see her eyes were closed and she was shaking her head ever so slightly.  It made me want to laugh, but I chose not to do this.  Let me explain that I hadn't considered laughing AT my mom, but rather at the thought that exercising my free will to investigate other options was causing her distress.  I'm sure she was thinking I had it all wrong and that I don't understand what god is all about and/or if I lean on god he can help me in numerous ways and on and on and on.  But.. really?  How can someone imaginary help me beyond what I can do for myself?  And yes, I know my parents and millions of others around the world do not consider god or other deities imaginary, but the burden of proof is on THEM and not me to prove how it does not exist.  I'm not worshiping anyone so why should I have to explain myself?  It's not as if I'm stating that the Easter Bunny is real or that the Tooth Fairy is the one who brought me money with each tooth I lost when I was a child.  I mean seriously.. how could the Easter Bunny decorate eggs without having apposable thumbs?  Not that this is the only reasonable argument, but it is one point that makes it absolutely silly.  Basically, I see Christianity as ridiculous as believing in the Easter Bunny, Santa Claus, Tooth Fairy and other childhood tales our parents told us were real.
The above pic pretty much says it all, doesn't it?  Sure, it's reworded a bit but it's the basis of Christianity!  And here is what gets me all the time.  When I mention things from the Old Testament being ludicrous and not at all possible, I'm told that they are just stories to teach a lesson.  Really?  So people get to pick and choose which stories are false and which are real to fit their agendas?  Is that how it works?  I believe that if part of book, which you claim is "real" isn't real, then it disproves all of it.  For example, the story of Adam and Eve.  They were told not to eat fruit from "The Tree of Knowledge of Good and Evil."  Was god afraid that man would figure out that there was a world outside the garden and that man could depend on his own brain to figure things out?  I see the story as the god concept wanting to bully poor Adam and Eve into being his slaves and watching them naked to his hearts' content.  Until, of course, they figure out they are naked (or just got tired of being sunburned) and made clothes for themselves.

There are many things I wish people would stop to think about.. such as why on earth there was this "flood" when your god loves those he created in his image?  And during this flood he murdered men, women, children, BABIES, pregnant women, animals, babies as cute as my three cats.. all out of SPITE because he was having a PMS'y kind of day.  Yeah, OK, go ahead and worship THAT kind of god.. I'll stick to believing in myself and reason.

I could go on and on and I'm sure I will!  But my brain is hurting too much from remembering the days when this shit made sense to me....

Monday, February 27, 2012

I have MS, but life goes on

I really don't wish to write about every year since I was diagnosed with MS since it would cause me too much heartache to remember it all and would take too much time and effort.  But there are aspects of the MS, as much as I despise them, that need to be mentioned.

When people see me, most tend to believe that I'm doing quite well since after 21 years with MS, I am still ambulatory with the aide of my funky purple quad cane, am able to drive most of the time, live alone and appear happy because a smile is usually on my face.  On the outside I admit that I look pretty damn good, but it doesn't tell the tale of what the MS has done to me.
When I was first diagnosed, I couldn't imagine anything worse than being without the use of my legs.  That is, of course, until I began to have trouble using my hands and realized that not having them at my disposal was far worse than not walking.  I could no longer straighten my hair, which I had been doing for over a decade and now had to "embrace" my natural curls and at that time, this was a fate worse than death!  I now love my curls, but it was a difficult transition.  On a much more serious note, imagine trying to eat or cut your food when your hands are not responding to the signals your brain is sending.  Or try writing or typing.  And worse yet.. imagine trying to "wipe" after going to the bathroom.  Yeah, this was my life and it was horrible.  Not a moment went by when I wasn't in tears and this was back in 1999, at the end of a very bad first marriage.

The next thing to go was my short-term memory.  Oh, my goodness, this was a scary one!  I remember so clearly one day when I was driving home and I couldn't recall for the life of me where I lived, which exit was mine, what town I lived in, NOTHING.  This was before I had a cell phone, but I don't think I would have even remembered to use it if I had had one.  It was frightening.  I have no idea how on earth I eventually made it home, but I did a few hours later.  And then I would call my mom over and over again and tell her the exact same things until she finally told me that I needed to leave myself a note that I had already called her because I was beginning to frighten her.  To this day, I have sticky notes all over my computer and many calendars all over my house or I'd forget pretty much everything.

I used to love reading novels.  My younger brother is a writer and I enjoyed reading what he wrote but I can no longer even do that.  My mind no longer allows me to comprehend any sort of abstract writing.  Medical books.. yeah, I can follow those since they are full of facts and I don't have to use my imagination.  But the worst part of this is that I used to be a poet and was even published a few times.  I lost that part of me along the way and it was a huge loss.  Losing that part of myself still makes me cry.  Dammit, I was good!  When I read the things I wrote, I can't believe I was able to create such beautiful works of poetry and now it's just gone, gone, gone.
The marriage sucked, but my cake rocked!
I guess I should mention that I used to be a cake decorator (even decorated my own wedding cake!) and obviously, I can't do that anymore since my hands no longer respond too well.  I somehow managed to decorate my mom's cake last year, celebrating her 25-year anniversary of being cancer-free, but it took me almost two weeks to make all the roses so it was no longer a fun endeavor.  At least the cake turned out very pretty and I'm proud of it.  Mom loved it, so it was well worth the effort.  Best of all, Mom is alive and well!  And that's what that day was all about.. celebrating MOM and all she went through after breast cancer.
my beautiful mom, celebrating 25 years cancer-free!
taken on Mom's cancer-free anniversary, January 2011

Sunday, February 26, 2012

The story continues...

So now I knew I had MS but simply knowing did not prepare me for what lay ahead.  And before I go on, I think it's important to explain what MS is, for those who do not already know.  Please know that I am going to describe what it is in my own words, but still encourage everyone to "google" it or go to your friendly library to do your own research.
MS (multiple sclerosis) is neurological, which means it is a disease of the brain and spinal cord.  It is also chronic, so to be afflicted with it is a lifelong journey.  Since our nerves are EVERYWHERE in the body, MS affects every bodily function at some point but tends to begin in the legs and/or eyes.  Optic Neuritis is a very common first symptom of MS, as it was for me.
What happens in MS is this.. our nerves are covered by a sheath called myelin and the messages our brain sends out to other body parts travels down the myelin to its desired destination.  In MS, our bodies are eating up the myelin so there are gaps and the message is not arriving to the destination in its entirety, or else it's not arriving at all.  That's basically the short, simple explanation but what it does to our bodies, and our lives, is far more complex.
Over the years I believe I've experienced most problems that come with MS, with the exception of paralysis.  My first five years or so were the hardest, where I spent most of my time either using a "quad" cane or wheelchair, experiencing new levels of pain in my legs, falling into a world of depression I had never known existed, feeling lost and alone and knowing the world was moving on without me.  I'm sure some of it was my fault since I chose to isolate myself, but it still hurt when people I thought were my friends no longer called on me because I wasn't fun anymore.  But how could I be "fun" when I was dealing with a life sentence I could not fully comprehend and in no way deserved?

The one who was my "saving grace" during these hard times was my dad.  My mom had started working full time at a local bank and my dad had recently gotten early retirement from his work since they were closing the foundry where he was employed, and this gave us a lot of time together.  Almost every day, he would take me to the mall and wheel me around and buy me most anything I'd see that would catch my eye.  Pretty much every employee began recognizing us after a short time and would wave at us or smile and say hello, which always made me feel good.  I felt like a celebrity of sorts and would chat with many of them.  The only time I would hate being there was when we would run into someone we knew and I would get looks of absolute pity.  Some would even start to cry.  What were they thinking?  As if I didn't already feel bad enough to be fucking crippled at such a young age!

And then one day, I asked my dad to give me his arm and I would try to walk.  It probably took me 20 minutes to walk the distance that would take most only three, but I was so proud and then Dad and I both cried.  We were so happy that I was able to do it, no matter how difficult it had been.  I'll never forget that moment.  This happened either at the end of 1992 or the beginning of '93.