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!


  1. I love you Sam. I'm always here for you.

  2. I always envied Dan for his extroverted personality always keeping us laughing when we all went out. Knowing you two are soul mates to each other I am sure all of us feel better knowing he is there with you during this shitty hand you've been dealt. He sounds like the perfect candidate for "husband of the year" and you for "strongest woman of the year".
    Love to all.

  3. Dear Sam, As always - thank you for sharing. Thank you for your courage. Thank you for your candor. I am so happy for the three of you that you have each other and that Dan has you - and you have Dan. I bet most people wish they could find that kind of love and devotion.

    Sending you a hug, my prayers, my constant thoughts, & much love .

    Steph & Bill