Monday, September 24, 2012

What can I say...

There are so many thoughts running through my mind about what I should say.  In fact, I've spent over a week thinking about these things and I have just avoided sitting down and committing my thoughts to writing.  Thoughts like, do I keep protecting everyone or share that my right hand is losing strength?  Do I pretend I'm not scared or share that I am terrified about what will become of my boys if, or when, this disease takes me from them?  Do I talk about what worries me most or the few good things I have discovered about life because of ALS?

So I finally am writing and here are some of the things that are new and bothering me:

~I rarely watch movies that make me cry anymore (or have too high a potential to make me cry) because crying is just not as easy as it should be.  (This is also true of sneezing and laughing, but I can't control the sneezing and laughing is worth the ridiculous way I sound because it means I'm happy or at least having fun.)
~I hate to admit that I am losing strength in my right hand.
~My speech is not only difficult to understand, I hate that it is such hard work to try to be understood, something that should be so natural and easy like it was not so long ago (has it really only been a year).  I also hate how I sound when I talk and wish I could just avoid talking altogether sometimes but I hate the lack of communication more.
~I hate that I have fasciculations, or "twitching", on my tongue all the time (first noticed in December '11 by an ENT doctor), and now I feel them in my arms, back, shoulders, and face regularly.
~I hate to share these things because it makes it more real, not only for me but for you.
~I hate what this disease does to the body of the afflicted and to the lives of those who love them.
~I hate watching my husband and son suffer and know that I really can't do anything about it because I am the cause of it.
~I hate that I can't fix this for myself or anyone else.
~I hate that there is not more help available from the medical community.
~I hate that ALS exists at all and, of course, I hate that it is touching my family in this all too real way.
~Finally, I miss my regular old smile that just happens when I am happy or laughing, it just not the same anymore because my facial muscles don't all work the same.

Since it is always better to end on a positive note, here are some good things:

~I no longer worry about what I eat being too fattening or not healthy enough.  Of course, I still mostly eat healthy foods because it's what I like, but if I want to eat rainbow sherbet or a cheeseburger with criss cut fries and a Coke, I have them and don't think twice about it.  I don't exercise other than walking to the beach and other normal daily activities but I haven't gained or lost weight in months and I am so ok with that.
~I don't worry about the little things.  I am not embarrassed to dance in public or wear a bikini at the beach or any of the other silly little things that I would have been too embarrassed to do in the past.  There is nothing in this life worth being afraid of because of what other people will think of me anymore.
~I cherish every day in a new way, find something special about each one to remind me that each day is worth living even when I'm feeling sad and scared.
~Every day I am grateful for my husband and the wonderful man he is.  As much as I hate that he is having to suffer through this experience, that he is losing a part of his world in a painful way and I wish I could spare him that, I cannot imagine going through this without him by my side.  He is such an amazing man, so thoughtful, kind, loving, funny, strong, generous…there are really not enough good words to describe him.  I can honestly say that he is everything I have ever wanted in a husband; my best friend, a loving father, honest, smart, and so much more.  Every day he makes me feel loved, cherished, valued, important, and he can make me laugh even when we both just want to cry - a truly wonderful quality.  He listens to me and understands me, even if he doesn't always agree with me.  His love, friendship and support get me through the day, every day.  He is truly my rock, my strength, the love of my life.  Without him, I wouldn't be me and my life just wouldn't be all that it is and has been.  I am the luckiest woman!

Monday, September 10, 2012

Sing Together...

Last Thursday night I went to a concert with my BFF.  I have been a Train fan for over a decade and it was great to see them live! The venue was small and we had excellent seats, they put on a great show and at one point did a wonderful montage of songs from all their albums over the years.  They were very generous and interactive with the audience, which was fun, inviting more than a dozen fans on stage to sing and dance during the Mermaid song (most were teens now with a memory they will never forget), they threw t-shirts and beach balls autographed by Pat Monahan into the audience, and at the end Pat gave away a signed guitar to a fan he said had her hands up and sang every word of every song with him throughout the concert.  It was a very fun experience that I enjoyed very much! 

I wish I could say that while I was there I was transported away from all that is really going on and I could forget for a while, but that's not true.  It doesn't change the fact that I had a fun time but it never leaves me, the knowledge that life is fragile.  And not just mine, but all of us.  This past week has been a real mixture of loss and blessings rolled into one.  I won't go into the details because they are not all mine to share, but I will say that I have never felt more aware of the way life can change from one minute to the next.  You think you are doing ok, going along and living each day as best you can, then BAM, you get slammed from all sides it seems and you just don't know which way is up.

In the end, I guess the only real option is to forge ahead and keep living for those moments that make you smile, that allow you to hold on to your loved ones and make sure they know how much you love them and how much you treasure each moment shared.  When our time is up, there is nothing that we can do to stop it, but for my part, I hope to at least leave behind memories of love, friendship, laughter, and the lesson that life is to be lived every day, big or small is up to you, but enjoy it and make it the best life you can imagine. 

While I have been criticized for my beliefs, or lack of them, I will tell you that one thing I truly believe is love goes on, always!  Train ended their concert Thursday night with this song, Sing Together, from their newest album, California 37.  I've been listening to the album for a couple of months and this song sticks out for me for reasons I think will be obvious once you hear it (be aware, it can be a tear jerker).  I'm adding this video for you all and ask that you remember to sing every chance you get. 

I would like to dedicate this song especially to my friend, a very brave and strong woman who lost her mom last week.  You are in my thoughts everyday and I hope you enjoy the song. 

Tuesday, September 4, 2012

Still talking, one way or another...

For those of you who haven't seen or spoken with me in a while, I realize that you may not fully grasp how different my speech is today.  I know I've mentioned before how difficult it is to understand me and how much of a challenge speaking is for me in general, but if we haven't spoken in person or by phone in the past 3 to 6 months, I really don't know if you can imagine the reality of it all.  In truth, because I know how drastically my ability to speak has changed in the past year, and why, I try to protect the ones I can from my reality.  This may not be the best thing to do, but I guess I am also trying to protect myself by not letting people I love see how much of a challenge I face everyday.  Then my brother called the other day and said that while he knows it is difficult, he really just wanted to hear my voice and I have to say that really meant a lot to me.  So, I decided to make a short video for you to watch and hear for yourself how I sound today.  The video was taken at the beach and was unplanned and unscripted so please keep that in mind.


Since I am not one to give up talking altogether, last month I started taking a sign language class with Dan and Lisa.  It has been going really well and in a short time we have actually learned quite a lot.  Of course, there is still much more to learn, but as of now we are able to have short conversations together completely in sign after just three classes.  We mostly talk about what color something is, how much something costs, and other minor things that we know the signs for, but its a good start and each week we are learning new words that really help with extending our conversations.  We are having fun with it and we like to practice often.  I find myself using sign along with my words throughout the day to become more comfortable with it on a regular basis.  For me, this will become my main form of "talking" soon. 

Living so near to the Florida School for the Deaf and Blind, we have a large community of deaf people in our town.  It is very common to see people signing in the grocery store, at restaurants, at the beach, and just walking around town.  This is why I believe so many people make the assumption that I am deaf when I talk to them.  For example, at the library there is a man who always moves the computer screen to face me so I can see my book due dates, then he writes them down for me as well and makes a point of being sure I know its the due date.  I have told him that I am not deaf but he doesn't seem to remember that from one visit to the next.  As soon as he hears me speak, he starts his routine.  I don't mind at all and, in fact, I think it is very nice that the hearing people in our community go out of their way to communicate with the deaf people in our community even if they don't know sign.

On the other hand, the deaf people in our community know I am not deaf right away, even if I am signing.  I learned this last week when Dan and I went to Starbucks and we were practicing our sign language.  I went inside and a man made a sign to me but I just smiled and walked past because it didn't register with me at first.  Once it dawned on me a few seconds later, I went back and said hello and explained that I am not deaf but I am learning to sign.  It turned out that he is deaf and is a retired teacher.  He had seen us signing outside but until I walked past him he didn't know I was hearing.  (I must have made some hearing person faux pas but I don't know what it was exactly.)  We ended up having a conversation in sign language and I was absolutely thrilled that he could understand me and I could understand him.  He  taught me a few words that he used which I didn't know (like retired, always, voice, and nice to meet you) and I was able to introduce him to Dan ("This is my husband Dan") all in sign.  After just three classes, I felt very proud that I could carry on a conversation with a stranger to whom signing is his first language.  When I took Spanish, that was definitely not the case.

If you don't know sign, don't worry, I will still be posting my thoughts and ramblings here.  I took August off from blogging but I promise to post more often now that I know people are reading it and miss it when I don't (thanks!).  I also email and text regularly so you can talk to me that way as well, and if you can find me, I am on Facebook (just not as Sam).  I am still very much available and interested in "talking", just not so much in the traditional way these days.