Tuesday, July 21, 2009

The Tempest

Last night there was a thunderstorm here at our house that was stronger than any I have ever seen (well, except maybe for one when I was offshore on a small boat in the Bahamas, but that is a different story.) The wind raged making the trees bend, shake and shiver unnaturally. The skies lit up in staccato flashes with unharnesable power squandering itself in the night sky. The rain came down in sheets, turning the streetlight across the Lane into an opaque glow, making the source of the light indiscernible a mere 30 yards away. The hail slammed sideways into the window, sounding like gunfire from a thousand random trigger pulls. As the storm raged outside, I wondered how much force it would take to break the window I was standing behind. I was not afraid that it would break, but I was curious. Fear seems to have left me.

I have had a night to think about that and as usual, I am drawing parallels, this time between the window and myself. How much will it take to break me? Who is standing behind me that I am charged to protect? Is this charge what keeps me strong or is it something inside me that has built up over time like most strength does under daily stress and repetitious exertion?

Bono wrote this: "Who's to say where the wind will take you? Who's to say what it is will break you? I don't know...where the wind will blow. Who's to know when the time has come around? Don't want to see you cry. I know that this is not... Goodbye." It's from Kite and is one of my favorite U2 songs. It might sound trite to quote a song by a popular rock band at a time like this, but the lyrics of a lot of U2 songs have touched me over the years.

Great mysteries are what these things are. Questions I can not answer for you or for myself. All I can do is try to stay strong every day, because if I am the window, I know who I am protecting, and the shield has to be strong. I have four girls who depend on me mightily now.

If I am the window, then maybe you can see the Tempest through me. The storm that rages out there on the other side of me is the storm that rages in my heart and is the same storm that ALS causes for so many families around the world. It is stronger and scarier than any thunderstorm because today it is certain that THIS storm will kill whomever it descends upon. It will take your strength, it will make you and all around you suffer for years, then it will kill you. It is a storm of pain that no Mother should bear or Father should suffer. No child should have to deal with this. No friend should have to see what it causes.

There has to be a cure out there and there has to be a person that has the knowledge to find it, the guts to make someone with the ability to bring it to market listen and the strength to keep trying when all before them have failed.

If I break, then I will have failed and I can not fail my girls, so I will not break. If I get knocked down, You will pick me up, You will remind me that I need to steel myself against the storm for their sake, and I will not break.

Allow me to clarify the metaphor. "You" are my family. "You" are my friends. In fact "You" are people that I don't even know that send us prayers and good thoughts. "You" are those that support ALS research and have hope for a cure, and "You"....are God. I thank all of you every day, whether you know it or not. It is not your responsibility, yet you take it on gladly and with Love. This is very very powerful to witness and I am humble before it. In fact, I now know that I will die unbroken someday, except before God and only if that is His will.


  1. Just like that storm off Abaco made us appreciate the dock when we finally reached it (we all bent down to kiss it remember?,) this storm and your words help us appreciate the little things in our lives. And thanks to your insight, we all bend down to kiss our kids a little more often. Keep being strong.

  2. B. I read your posts and admire your strength and fortitude to continue on this road that has been layed out before you. I look at the picture of H and the girls and my heart is saddened by the cards you and your family have been dealt. H and the girls are beautiful and so young to have to deal with this.
    I am 58 and have been diagnosed with Progressive Bulbar Palsy which in essence is Bulbar onset. I was so angry and scared at the beginning and as I grew accustomed to my predicament I started searching the web and found your family's story. H is so young to have this horrendous disease and the picture is so beautiful. I feel cheated out of a long life and I look at her picture and feel so blessed to have had the time that I have had. I started my family at a very young age and this month my oldest grandson turns 21. So, I am blessed to have seen him grow to adulthood.
    I don't know how you do this and I have fears of what will happen to me in the future. But your blogs give me perspective.
    I pray for a cure just as you do. It is unthinkable that we have so little treatment available. I am losimng my ability to speak and as it goes I feel myself retreating into myself. I saw a saying the other day, and I want it to me my mantra. Just because I cannot speak doesn't mean that I don't have something to say. I pray for your family every day. I pray you are given all the strength you need for your girls. Keep up the good work, you are someone to be admired.

  3. Your words challenge us all to be better. There is truth to the words..."for when we are weak then we are strong". There's not a day go by that we are not praying for you guys. Continue to lean on God for strength. You are an inspiration...All our love, Robbie and Julie

  4. Bill, I don't know how many times I've read your blog and hit "reply" because I've been so moved by it. Then I sit.. and think... and just don't have words enough to tell you how you inspire me, and how strong you are, and how proud we all are of you. All of us who know you, know that you will not break, and we're all here to hold you up and we always will be. I know in my soul that God strengthens you every day, and he is walking right beside you through each step. Thank you for being so strong, and for being a great father to those girls I love so much, and an amazing husband to my dear friend. I send you love and prayers every day and i hope you feel them and that they strengthen you. You strengthen so many of us and we are all so proud of you.