Sunday, 28 April 2013

Hope Is A Funny Thing

Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Hope is a funny thing. It is an innate part of the human spirit. We need it desperately  Our religions, our faiths, our belief systems all demand that it be a part of what our God gives us. There is no time nor place, no love nor life nor passion nor pain where hope does not spring to us. Hope is eternal, unending, undying.

My daughter gave me a card with the verse above written on it. Her goal is to spark a sense of hope in me. She put thought and care into the selection of that verse, time into the writing of that card, concern into the creation of her gift to me. She wants to imbue me with hope, in a hopeless situation.

This disease destroys more than my body. It destroys my hope, my faith, my spirit. Daily, steadily, inch by inch I am lessened, weakened, destroyed. When the doctor says you have a terminal illness from which there is no escape, that is one thing. In reality we all have a terminal illness from which there is no escape; it's called living. The soul sucking part of the conversation with the neurologist is when they give you the date. It's not an exact date yet it is close enough, measurable enough, intractable enough that you can see it, feel it, sense it, know it, and dread it.

ALS is the only disease where you get a score and you get to see the count down. It is a disease of increments that leaves you in dread, knowing that it will, without any hint of doubt or uncertainty, without remorse or retreat, take every muscle you have and destroy it. There is no hope of remission, no hope of cure, no hope that it will slow down or miss something or skip an arm or eye or finger. Death, slow and marching, inexorable and inevitable, visible and visceral; death you will see coming, with no hope of avoiding it. That is what this disease gives you.

I no longer hope for a cure, nor even a respite. There is no hope for that. I am asked to participate in drug studies and I say yes, not in the hope that it will cure me. There is no cure. The participation in these studies is hope for delay, hope for another day of sunshine, another moment of breath, another hour where I can share time, care and love with those around me. Therein lies my hope.

I hope for today, and maybe tomorrow. I hope for love, lust, companionship, care. I hope for the things of the moment, things of the now, things of the present. I hope for a single thing in each day that will make me smile, bring a moment of pleasure, an iota of joy. I hope for a single thought in each day that will lift me up out of this plane and allow me to become transcendent. I hope for an idea, a glimpse of something, a dream; anything that will add joy to this single moment. That is what I hope for.

I hope that my children will remember me. It is a certainty that my grandchildren, some yet unborn, will never know or remember me. It is a near certainty that I will be seen only as a picture on a computer or in a photo album. Yet I hope, constantly, daily, deeply, that my children will speak of me to their children in kindness, as a man who lived, loved, dreamed. I hope, in an almost inexplicable earnestness, that my children will remember me as more than just a dying man, crippled, angry, frustrated, sad. I hope that they will remember my laugh, my joy, my energy, my compassion, my intellect. I hope their memories will be good ones.

Part of me is vicious. I hope that those who are unkind to me will regret it. It seems "un-Christian" but it is true. I hope that those who would do ill to me, who would speak ill of me, who would lessen me; I hope those people will awaken to the sad knowledge that what they do harms them most of all. And yet I also hope they will find forgiveness in themselves, and that they will forgive me too.

I hope that when this all ends, it ends on my terms; when the time comes for me to leave this life, I can leave it with dignity. I hope that I am not a burden, that I am not a weight on those around me. I hope I don't leave too soon, nor too late. I hope I get the timing right, the dose right, the tool right. I hope I don't make a mess of it.

Hope is a funny thing. Even with ALS, I find reasons to hope and things to hope for.


  1. I just can't get over how your writing from your very soul hits me in my very soul. I have the utmost respect for you as I follow your journey. Your life has meaning; as you write, if it gives one person (me?) a different perspective on life, it's has worth. Thanks, Linda

  2. I hope you can do it your way my precious son. More love than you can imagine . And it is wonderful that you can offer meaning to others such as Linda.

  3. Is the test for ALS definitive?