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.

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.

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....

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

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.

The good, the bad and the f'ing ugly

I consider myself quite lucky in life, despite things that have been beyond my control.  Choices I have made along the way have not always been the best but have taught me important lessons that have helped shape me into the woman who stands before you today, although leaning slightly to the left (literally!  Ask anyone who knows me).

I love my parents, accept their views on things that do not coincide with mine no matter how difficult at times, consider them some of my closest friends and know I can depend on them.  I have two brothers whose strong opinions, values, morals and way of living their lives have influenced me more than they probably realize and for this, and many other reasons, I love them and respect who they are.  I have more cousins than I can begin to count and all I can say about most of them is THANK YOU FOR BEING MY FAMILY!  Yes, I did say "most of them" because as we all know, family is family and we can't always get along just because we share the same blood.  But for those who I am so fortunate to call my family AND friends, they are priceless to me and their children (who, for Hispanics, are nieces and nephews) are ones I carry in my heart each and every day.

I'm not one to have friends just for the sake of having friends, so the ones I have are TRUE friends in my life and ones I know I can count on when I need them most or, other times, just because we want to catch up.  My best friend in the entire world has been in my life since the 7th grade and I hope we will be best friends forever, which I feel is a very distinct possibility.  Unfortunately, she moved to Iceland (her mother is Icelandic) when we were in the 8th grade, but this did not stop us from continuing our friendship through letters and visiting one another later on in life.  But to look at us, you would think we were complete polar opposites.  Me, being overweight and having dark, curly hair while she is far more svelte and has straight, dark blonde hair.. yet we were sisters from the start!  I have a few other good friends who I care for very deeply and the good thing is that they live much closer than Iceland!

Ahh, how could I forget to mention three of the most important ones in my life?  My little girls!  Yes, my cats are three precious little gifts in my life that I am thankful for, which I tell them each night before going to sleep.  Hey, I never said I was completely sane, did I?

OK, so those were all the some of the good things in my life.. but life isn't always wonderful and I believe I've had more than my share of heartache and heartbreak.  I've been a very angry, overly emotional, sad, hurting, depressed person for as far back as I can remember but it wasn't until I was 20 years old that I was diagnosed as Manic Depressive (now called Bi-Polar), but I wasn't in complete agreement with this diagnosis.  I had all the lows, but none of the highs, so it didn't make sense to me.  A few years later, I was re-diagnosed as having Major Depression, which I feel was the right diagnosis and was able to receive the correct medication for my condition.

One year after the Manic Depression thing, in May 1990, I began having trouble with my eyes, mainly the left one.  A couple months before this, I had gotten new glasses and was confused and scared as to why I was almost blind in this eye from one moment to the next.  I was told I had Optic Neuritis (after being told I was probably diabetic, being that I was overweight.. had the glucose tolerance test and I was NOT diabetic!).  Well, this was not to be the end of my problems for the year.

During the next few months, I had two complete separate episodes that affected my legs.  By that time, I had already seen an opthamologist for the eye problem and then was sent to a neurologist for reasons I didn't quite understand at the time but once the leg problems kicked in, I was seeing the neuro more and more often.  On November 12, 1990, I knew the answer to what was happening in my body and why I was barely able to walk.  I had MS.  Multiple sclerosis.  And I would have it for as long as I lived.  I was only 21 years of age.  FUCK.