Friday, January 4, 2013

My fight ...

I was asked not long ago what I mean when I say "I am fighting ALS, I am not giving in."  The person was asking because she knows there is no cure for ALS and treatments are limited to making the patient "comfortable" as their body is ravaged by this horrible disease.  So, she asked, knowing that you are living with a life-limiting illness that will be the eventual cause of your death, what are you fighting and how do you fight?  These are valid questions and while some of the answers came to me immediately, others took some thought.

I understand that it is easy to feel, if you are fighting a losing battle, what is the point?  For me, the point is that today, I am alive.  For me, the fight is about living.  I choose to focus on living every day, not on how I will eventually die.  I fight against the thoughts that could pull me down into that dark abyss of depression where it is next to impossible to crawl back from without serious help, motivation, and often, medication.  I fight to keep doing the normal, mundane things that I have always taken for granted.  I fight to keep communicating one way or another.  I fight to be present in every day, to love and share myself with those who love me.  I fight because giving up is just not my way. 

At the same time, I am realistic.  I have already lost most of my speaking ability and I know that I am losing my upper body strength and dexterity.  I feel the changes in my hands, wrists, elbows, neck, and shoulders and I have to make adjustments and allow others to help me do some of the simplest things like cutting my steak or washing the dishes.  This is not to say that I don't stubbornly hold onto the idea that I can still do everything the same as before because I should be able to, but facing reality is not a perfect science.  Its funny how important the ability to wash the dishes, fold laundry, or comb your own hair becomes when faced with the truth that you won't be able to do them anymore.

As the new year began, I started thinking about the new ways I will find to keep fighting for my strength and purpose to live.  I've also been thinking about what I want to leave behind when the time comes.  One thing I can do now is to help myself and others affected by ALS, either personally or through someone they know and love.  Over the years I have supported causes that are important to me both through volunteer work and donations.  I realize that it is time to stand up and support the cause that is now my cause.

I plan to be vocal, in whatever voice I have available to me, to spread the word that ALS must be stopped.  We need even better technologies and less expensive options to help those who are losing, or have lost, their ability to communicate.  We need to see more open ended drug trials so patients who are seeing improvements can be allowed to continue with the drugs following the trial while FDA approval is being sought.  We need better treatments, we need to slow the progression of the disease, and we need to find a cure today!  I am asking for you to use your voice as well.  Please share my blog with your friends, family, neighbors, co-workers and classmates, PTA and book club members, your Bunco groups, your teammates and fellow commuters, and anyone else you know to get the word out that we need all the help we can get to make this fight winnable!

I also plan to start by raising $5,000 to support the ALS Association as they support those of us living with ALS.  The ALS Association is a great organization that immediately jumped in to offer help, education and support to me and my family following my diagnosis.  Here is the link to my personal Community of Hope page http://webfl.alsa.org/goto/twystedsam.  I hope you will visit it and help to spread the word by inviting everyone you know to also visit and learn more about ALS and what we can do to make a difference today!

Thank you, from the bottom of my heart, for reading this blog and for all of your support, love, and encouraging comments along the way!  Its harder than I thought to write some days, not just from a physical stand point, but because it takes a lot more of me emotionally than I expected it would to put myself out there during this journey.  There are times when I want to stay in bed and just dream because in my dreams I still talk clearly and I am not fighting ALS, I'm only fighting zombies which is way easier!   Instead I get up and find happiness and love in each day which makes me want to continue to fight…so I fight!

1 comment:

  1. Hi Sam
    My name is Joao and I am a friend of your mother for a looong time now. We haven't talked or seen each other since they were in Colorado, quite a few years ago. She told me about you and your blog. It is shocking, why do we have to suffer so much. Some people a LOT more than others. I know that everything has a reason and everything is an opportunity to learn, but when we are faced with such challenges it is very hard to reason. The world is changing and evolving and there's a lot of new technologies that will address to many, if not ALL dis-eases, and illnesses VERY SOON! So, please, in your inner world, talk with your cells. Tell them that you loved them and you need help to keep the muscles healthy, vibrant and ALIVE. I hope you don't think I am out of place to be telling you this things. I will wait to see if you give me permission. I just saw a post on Stephen Hawkins.. I think it is his birthday. He also has ALS. Thought you might like to read... he has the same message... DON'T GIVE UP!

    Stephen Hawking

    On this particular birthday, We ask you not to focus on Dr. Hawking’s scientific achievements but, instead, on the achievement of his life itself. It was 50 years ago that Dr. Hawking was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. Typically, patients diagnosed with ALS have a life expectancy of a handful of years from the onset of symptoms. His survival, despite the odds, is a tribute to his own humanity and will to survive, the support of his friends and family, and the skills of medical and assistive technology experts.

    We have always been a great admirer of Dr. Hawking’s work as well as his ability to overcome the obstacles in his life.

    Prof Hawking reflected on his life as a "glorious time to be alive" and said he was happy to have made a "small contribution" to our understanding of the universe.

    He concluded: "Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist.

    "Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don't just give up."

    Surrounding you in Love n Light!
    Joao

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