Sunday, October 3, 2010

How are you really doing?

Many people have been asking me 'how are you?' I say, 'good thanks' and we move on with our day.

The reality is different however and I thought despite how hard it is I should tell you how I'm really doing.

The things I don't say to you all when you ask me how its all going are:
Today like everyday at the moment is a struggle to get through.

Having MND is like being in a glass coffin.

I can see what is going on in the world but I cant participate. Mike and I have all this time on our hands which I would normally fill with activities like sending emails or organising the house, doing craft, etc except my hands don't work. As a result I have all this time and all these things to do but I cant do them. I used to participate in life and now I feel like a spectator.

You can imagine how frustrating that would be. My voice doesn't work as well as it used to so sometimes people don't understand me. It is now hard to hang out with friends or call people over in the states as talking on the phone is difficult. Not being able to express myself as quickly and clearly as I want to makes me feel a bit cut off.

I think it is impossible for people to understand what my days are like.

I still get out of bed everyday and go out into the world. I still laugh at funny things and definitely haven't lost my ability to enjoy tasty food.

So how are we doing really? As good as we can do.


  1. Stacy, you don't know me and we have never met but I pray for you and Mike every day. Your faith and courage over the past year simply leaves me in awe. You can't begin to imagine the effect your grace and heart have on people. You inspire miracles wherever you go. When the couple you didn't know pressed $50 into Mike's hand, that was a miracle. When Jeff sat down beside you and Mike at the restaurant in Reno and talked about his health struggles, that was a miracle. When people like my husband and I (who have never met you) pray for you by name, ask others in our church to pray about you, and continuously peruse the internet for new updates on MND treatments, that is also a miracle. The light that you continue to spread to all who know about you only increases over time. Please know what an incredible blessing you are to us.

    God bless you fully with YOUR miracle,


  2. Good on you guys for reaching out and continuing to share your lives with the rest of us. Impressive.

  3. Although we can't fully understand what you are feeling, I know one thing for sure: you are NOT a spectator. You are doing, affecting, impressing and moving so many people in so many ways. We all love you and we're rooting for you every day!!!!!!

  4. Stace, you are doing it tough and the way you manage inspires me everyday. I can't imagine how tricky things are for you now but I know your spirit will find a way to be in the world and your definitely in my heart. I agree with Cindy, you might feel like your on the sidelines and I bet is sucks majorly but your definitely making waves. If there's anything I can do let me know. xo xo xo

  5. Stacy, just wanted you to know that I think about you everyday and I am always praying for your strength. I have been following the blog since you told me about it, but just made the account so you know I'm here and thinking about you, always. Love and hugs.

  6. Hi Stacy, just to let you know that I think of you all the time: you are such a remarkable person and I love you a lot. If I can help in any way please let me know our "captain courageous"

  7. Stacey, I just wanted to express how inspiring this blog has been, your courage, your hope and the love of your husband is so wonderful. I am part of the KG community and I'm so glad I have had the chance to catch up and read your blog after it was passed on at school. I wish and pray for you both this Xmas. Thinking of you often, we have never met but I am humbled by your strength and spirit.