What now? I’ve had ALS symptoms for over three years. I’m an old timer in some circles — statistically I’m one of the lucky ones.
From the start Steve and planned for the worst and hoped for the best and checked off a lot of the bucket list. Well, the best is happening as I am progressing slowly. So what now? Quite frankly I’m tired of being the sick one waiting and wondering where this monster will stage the next heist.
Next steps for living.
Get busy living or get busy dying — a favorite quote from Shawshank Redemption.
I’ve been living like I was dying. Now I’m ready to live like I am living. Time to re-engage. The shift will really take place in my head as my friends and family will probably not see a major change in my day-to-day activities. But a shift is occurring. In my mind, I am changing the conversation. Here’s my new story: I’m living with limited mobility and have a chronic fatigue issue requiring careful energy management. I can live with that. I’m planning on at least five more good years with semi-independence and a strong voice.
I’ll show no less respect to the monster that is slowly slowly slowly robbing me of all my motor skills. Oh yes. The monster is alive and well. I read at least one Facebook message a week of someone dying from this brutal disease. So please don’t read into this that ALS is not a big deal. It’s a deadly deal. I’m just tired of that being top of mind. Yet there are many who are progressing rapidly and do not have this luxury.
I will continue to educate and advocate. That’s who I am.
Next steps for writing.
Many of you follow my journey on my Caring Bridge Journal at http://www.caringbridge.org/visit/shellyhoover. I will continue to share my ALS related journey on this site to keep my family and friends updated. I appreciate the love and support you show through comments and emails.
I am going to expand my writing repertoire with this blog. I will still share some of my ALS journey, but will expand my focus on living a life that is forgiven and free. You may have noticed that I’ve duplicated my Caring Bridge journal entries on my blog site over the past few months. I’m at a fork in the road and going to separate the two. You can follow this blog by scrolling down to the bottom of the page and clicking the blue”Follow” button. Type in your email address and you will receive a notification when I post a new blog.
Now for the big scary step. I’m going to starting writing an inspirational book called Forgiven and Free: Living in Gratitude and Joy Regardless of Circumstance. Stay tuned!
I’m Forgiven and Free and ready for my next steps