Thursday, June 28, 2012

Life goes on...

For the past few weeks I have been struggling with a roller coaster of emotions which have kept me from writing.  Then last week I found my balance once again.  I am feeling better and back on track.  To catch you up with what I've been doing, good and bad, I thought I'd try to keep it simple.

Some of the good moments included:
-a trip to the Magic Kingdom with my BFF
-trips to Starbucks with my Dad
-signed up for sign language classes (starts in August)
-started taking pottery classes - I really enjoy getting my hands dirty and creating things from a block of clay
-hanging out with Dan each and every day and laughing together
-playing games with Ryan and hearing him laugh
-having a new text-to-speech app written especially for me to help with communicating out in the world
-read a good book
-met a cousin for lunch and had a lovely afternoon
-received some very nice cards and emails that help me feel connected and loved (thanks!)
-may have found our next home just a few blocks from the beach

Some of the bad moments included:
-seeing what ALS looks like as it advances in the faces of wonderful people who don't deserve this anymore than I do
-feelings of hopelessness
-not feeling safe to travel by air and missing a special family event because of it
-having the need to sign up for sign language classes because of how poor my speech has become
-had to take medicine to control pain, something I try to avoid
-feeling sorry for myself for having to deal with this, and especially while I am still so young

In some ways I have really struggled with that last one.  I spent some time feeling sorry for myself and wishing for another 30 years to share with my family.   Of course, the reality is that illness and death are indiscriminate of age, gender, religion, whatever.  I mean, yes it totally sucks for me and my loved ones, but after meeting other people, both men and women, who are living with ALS I saw that no one is ready to deal with losing their ability to eat, walk, talk, hug, breathe, no matter how old they are, how old their children or grandchildren are, no matter if they are in their 40s, 50s, 60s, 70s, it just doesn't make any difference.  Truth is, few are ever ready to go out without a fight even when you see it coming at you head on.

So for now, I will make every effort to keep a few projects in the works (pottery, writing, whatever) and it looks like we'll be moving into a home of our own again soon which is always full of fun projects.  I believe the best, maybe only, way for me to keep my head in the game right now is to focus on the things that make life worth living - of which there are so many in my life - because no matter what I do, life will go on, with or without me so I might as well get on board for the long haul.

Tuesday, June 5, 2012

The other side of fear...

It is terribly frightening to learn you have an untreatable disease and as it sunk in, all the fears for what may come, how soon it may come, and in what form it may come found their way into my mind.  Fears about how it would feel to lose control of my body, piece by piece, until I'm left with a shell controlled by machines and doctors (no thank you, by the way).  Fears for not just how I will deal with it, but how the people I love will deal with it all, both while we are going through it and after I'm gone.  So many things to fear, but I know fear is not the place I want to live in.

While most of us don't know what tomorrow will bring, I find it was much easier to plan for the future before April 30th.  This May was just kind of a blur that included a lot of fear, sadness, and a deep sense of loss.  But, as June approached, I started to get my bearings little by little.  I am now beginning to feel, at times, a sense of freedom that seems to reside on the other side of fear.  There is a freedom in knowing that I can control how I live today, tomorrow, and everyday for the rest of my life.  I can choose my mind set, my beliefs, how I spend my time, and how I act and react in each situation I am faced with on a daily basis.

There is a freedom in knowing that while today I am walking on the beach, laughing, making plans for the near future, and just basically living my life as I wish, tomorrow is completely uncertain.  That uncertainty can be approached with fear, but that only adds stress and I don't need that.  Instead, I choose to face the uncertainty with a sense of freedom and acceptance, with love and gratitude for every good thing, every wonderful moment I am able to share with the people I love, both near and far, rather in person, in thought, or through technology.  I believe that uncertainty can bring beautiful experiences to one's life if only we are open to them.  I believe in keeping a positive outlook and focusing on all the blessings in my life, and there are more than I can count!  This doesn't mean I am fear-free but it does mean that even when fear is lingering, I am not allowing it to control how I live.  

I am finally in a place where I can feel what is beyond the fear, and that is a freedom to live and love without worry for what could come - there are no guarantees for any of us, so I am choosing to enjoy my life and do the best I can with each day.