Friday, August 24, 2012

Hospice, seriously?

There no word to describe how surreal it is for me to say I am now on hospice. Honestly, I find how bizarre it is to be more comical than overwhelming. When I stop to think, I am somewhere between weeks and months away from dying, it seems hard to believe.  But, when I stop and look, I sincerely can't, don't and don't know how to believe I am dying. Yes, I recognize I am sick. My labs are bad. I am tired, much worse, and, much more regularly than I was. And, I see the obvious signs. Horrible petechiae, extreme bruising, weakness, et cetera, et cetera, et cetera. It is clear, my body is failing. Yet, my mind spins at how insane all this is. I don't sleep much, so, my mind is not as sharp as it normally is, but, I don't feel like a man dying, body weakening to the point of ceasing. I have so much I still want to do, things I have a hard time pretending like I won't be able to see through. And, yet, the realist in me tries to rise up and tell the dreamer, stop hoping, stop dreaming, stop looking to the future. It is not there. In fact, you are on borrowed time as it is.

It is here, in the midst of such conversations with myself that I stop and wonder, "Is this satan?" "Would God allow me to live a life, and, succumb to a death, like this?" "Who am I in the midst of a failed battle with cancer?" On the one hand I look at my kids, days away from starting a new school year. Exciting at the prospect of a new year, new teachers, and, unknown experiences yet to be had. And, then, back on the other, myself being absent, a void in the shadow of this life that once was, a life that should have been. Who really thinks their life will be cut short? And, more over, who gets to watch it crash to a halt with full awareness, and, a total lack of power to stop it? Such a horrible fate God laid out for me. I am no longer able to stand and pretend like I can praise God for my life at this point. Even if he didn't cause this, he allowed it to happen. He allowed my children to lose their father. He allowed my wife to lose her love and the man with whom she envisioned herself growing old, and, struggling through adolescence, college, marriage, grandchildren, and, when it was all said and done, time left to ourselves.

No. God has not blessed me with that fate. If he has blessed you with that fate, stop, now. Find your wife or husband and tell them you love them. Go hug your children and tell them how much they mean to you. For me. I cannot do this and it is such a simple joy in life. But, I sit here, as if painfully ashamed to have paid money to go see a movie I knew in my heart couldn't really be as bad as the ads made it out to be. And, yet, it is unraveling, day by day, loss by loss and disappointment by disappointment, into a tattered fray, a broken shadow of the well-lit, dream of a life I once lived. No one I know can even pretend to come up with an answer as to why. All the oracles in my life, who proclaim God in the worst of times, have gone silent. And here I sit. Alone. Waiting for death. Unsure how it will finally visit me. Will I be awake? Asleep? How shall it finally end? Right now, I see no great moment coming. No famous last words. Just one moment I am here. And, the next, I am not.

I have given up hope for powerful stories. For exciting testimonials. The disappointment I have had with God has grown so replete in the past months I don't even know where to begin looking for hope. My life is coming to an end. No matter how many time I say it, it still sounds ludicrous. Liam, when we told them the other day I would more than likely not be getting better, asked for a piece of paper, grabbed a marker, and, asked how to write, "I know daddy is dying." Talk about heart breaking. He was trying to wrestle with what it meant to say that, to write that, to see it real, and, coming from his own hands. I never imagined someone, five years old, stopping and trying to find out how real his father's words were. I never stopped him to tell him it was a joke, a horrible joke, or, he was wrong. There was no correction to what he heard, and, what he was writing. I can imagine, being that boy, writing that, and, realizing, how horrible it was to realize, "My dad is dying." God, you want me to praise you and love you? Yet, you make me do something like that to my own flesh and blood? How can I do anything but hate you.

Am I a horrible Christian? Probably. Am I sick of God's "love"? At this point? Yes. I don't know how I am supposed to justify the position I find myself in and what I am expected to do. You know, in the Bible, we praise people who basically take insane positions. Abraham was praised for his faithfulness, and, yet, God asked him to kill his son. Were it not God asking him to do this, we would have put him in prison, and, probably called him insane. Jesus himself, allowed himself to be crucified at the hands of brutal heathens and sinner. Yet, we praise this as the most noble of all acts. So, if we take Biblical history as the grounds by which I should just my potential responses, insanity seems to be the basis by which I should make my decisions. And, yet, considering what I face, that seems par for the course. Me, a perfectly healthy 33 year old man comes down with not one but two types of rare cancer, a second one so rare no one knows what it is, and, as the Bible would have it, I should be screaming with joy at the position I find myself in.

I just don't know how to do it. Frailty. A will to live. Normalcy. Lack of faith. Hundreds of labels seem to be viable for application here, but, I just want to have the life I thought was mine. A loving wife. Three great kids. A job I liked. And, a life through which I could reach out to share God's love. I don't ask for a lot, but, apparently, asking for this was too much. God seems discontent to give me this. He asked for more. He asked for my life. And, when I look, I don't know what I am supposed to see as being given in return. Oh, wait, God is not obligated to give anything. He is not expected to have to explain himself. We just suffer his love and thank him for it. No questions asked. No regrets. No sorrows. From where I sit, nearing death, I don't know how, at my young age, to reason through the set of predicaments that lie before me. If anyone else can see the meaning in this misery, please, share your vision of God's goodness. For I am blind and lost and Jesus has not yet found me. In case you need directions, I am right here God. Right where I was when you left me two and a half years ago...hoping you'll come back as my father and tell me, "No son, you heard me wrong, you are not dying." How I would love to share THAT moment with my family. "No son, you heard me wrong.  You will live!" Lord, is that really too much to ask?


  1. Will...I was brave enough to read this and grateful that I did. Now I know exactly what to pray for. You, like David and many others in the Bible, are wrestling with understanding God. Every single thought you are having makes sense. Count on my prayers...for you, Kerri, Emma, Page and Liam.
    With Love, Amy Johnson

  2. Not a horrible Christian. A human one, created for Life, but stuck in a fallen world where everything's broken. I don't think the great fathers of the faith jumped for joy at their extraordinary and awful trials. Even Yeshua "sweat great drops of blood." I don't have any bumper sticker faith for you, but I'm here. And I'll BE here. Love you and yours.

  3. Will..... I was warned yet thought I needed to read what you had to say. The strange thing is that it wasn't as bad as I imagined. It is hard to sit here and try and compare your situation with anything or anyone else I know. I sometimes wonder what you are feeling and try and put myself in your situation. I now know that I am fooled by how brave I thought I might be. I am a man of faith who knows I have never really been tested. Watching your sickness and reading your blogs, I lose confidence in how I might have been able to handle it.
    I don't have the words of encouragement that you might need. I don't feel worthy of even trying. I do know that you are not a bad Christian for how you feel betrayed at this moment. Hell, I am questioning my God for allowing a 33 year old man to be taken from his family after being a faithful servant. I question my own service to Him because I am relieved my family isn't going through the pain of yours. Does that make me selfish? We all talk of how we would die for our wives or children yet feel relief that the pain of others isn't ours. Am I a bad Christian for feeling this way?
    So what is the answer? I don't know. What I do know is that you are about to find out. Where does that leave me? As a member of your community group I know that we will comfort Kerry and the kids through a grief that we will not understand. She will have support and help for the needs and burdens that are sure to come. But that doesn't help me. (Selfishness warning) I am crying tears now for a man I do not even know well. Why? ....the answer is one I am trying to come to grips with. It is because I am a father. It is because of that i feel an obligation to try and be a positive male influence in your kids lives. Yet no matter how well us men from your community group do, we are not their father. I am pissed because of that. Why has my God allowed this?
    So now my conclusion. The only thing I can count on is faith. Faith that Christ will be waiting on you, to give you the answers you seek. Faith that you will watch your kids grow up even though they won't be able to physically see you or touch you. Faith that God will make us good stewards to your kids since you won't be physically here to do that. Faith that God will show me grace and mercy for questioning all of this. But most of all, faith that one day we will meet again in the kingdom, and you will shake my hand and welcome me home.
    May God Bless you Will.

  4. Will--God has something instore for you much greater than this life in the body you have been loaned--I dont know what it is---but my faith tells me it going to be an awsome journy--this is only the begining not the end--
    do I want to die to find out?--yes--no--that doesent matter, Im not going to get out of it --my day will come as it will for all of us---this aint the end my friend--this I know---I love you Will Steele-----Darin

  5. Will,

    Thanks for sharing (and for sharing on FB with the warning). I think in our bubble of unprecedented prosperity we don't wrestle with these kinds of questions enough. I am so sorry that it's you, and I feel many of the same emotions mentioned by the other blessed guys who have posted here.

    But here is the word that God really gave me. Maybe influenced by recently listening to Matt Chandler's sermon series on Habakkuk (who challenges God about injustice and gets an earful and a consequence, to say the least). Which is more tragic: your situation in all it's gory detail but in God's hands (before cancer, through cancer, and after cancer for you and your family), or someone who lives 90 years, has all the college and weddings and the grandkids and the 60-year anniversary and the retirement and "it all", but in rebellion to God throughout and for eternity?

    That is chilling for me as I don't act that out. I pluck the best of both sides with my current blessed state. I read your FB and blog (periodically) and mourn for you and pray for you and your family, but not that way for the people around me who are in the second category.

    I hope that is not coming across in any way trite for you to read Will (or anyone else reading it). I'm certainly not the best or closest supporter of you guys. I think anything that we could say is trite really, but really it's about me and just sharing with you, just discussionally I suppose.

    Praying for you. For a miracle as always, but increasingly that you will use the time that you have left here to love and be loved by those around you.

    Matt Romig

  6. I feel ya, brother! And what it kinda sounds like you're saying is: "My God, my God...why have You forsaken me?" Those are the same words written by "a man after God's own heart," and by the one we call Messiah, Christ, Savior. I'd be in a lot worse place if I were thanks for strengthening our faith by sharing. Finish strong!

    1. Walktoinspire
      My son, I am struck to do as instructed by the angel in the park on Thursday and tell you daily to TRUST. Surrender your doubts and despair and TRUST! She also said to remind you to smile!! Love Mom

  7. Dear Will, I read your post this morning before going to church, and I was deeply burdened for you. Not knowing how to respond, I had you strongly on my heart as we began the service. Our pastor introduced a song to us that I had never seen before, even though it is in our hymnbook. ("Jesus Is the Song", The Baptist Hymnal, pg. 552) The pastor told us the story of the composer of this hymn. His name was David Danner. He wrote this song at age 28. Why am I telling you all of these details? Well, according to our pastor, David Danner died very suddenly, at the age of 42, of a heart attack. Totally unexpected, no warning. Prime of life. I don't know if he was married, had a family, or what else he had done in his life. I'm sure he had hopes and dreams for his future just like you. But he left the world with this song. Obviously, when he wrote it 14 years prior to his sudden death, he expected to live a long life like everyone else. I don't know if he had been given a warning that he would not live past 42 years if he would have written this song. Perhaps it is better not to know the future. But one thing is certain. Every man, woman and child on this earth has a date with death. It could be today, tonight, or 6 months from now, or 50 years from now. No one has any guarantees or promises of a long life.

    Jesus lived to be 33. He lived His life every day preparing others for their eventual passage from this life into the next, because that is precisely WHY HE give us a "next life". That is the promise He made. Eternity in heaven with Him. Not eternity on earth with anyone else. If this life is all we could expect, maybe for some it would be enough. But for most of the world, it would be a great disappointment. I thank God everyday that this world is not my final home. I know, I am not a young 33 year old person anymore with a young family. I've lived a pretty good life, almost 62 years, with a great family. But I can tell you now, if God were to take me home today, I would be so thankful to enter heaven's gates. I would go with the assurance that it would not be long before my family would join me, because time is irrelevant in heaven. I know my family here on earth would miss me, but they would also have the same assurance that they would join me in heaven some day. That is our great hope...our promise...our real future worth living (dying) for.

    These are the words to the song that David Danner wrote. I thought of you as we sang every verse, and prayed for you. I prayed that somehow, Jesus would fill you with His love and peace and comfort today, and that Jesus would indeed become your song as well:

    "My Savior is the Lord and King, He has control of everything.
    He loves me and He bids me sing. He gives His song to me.

    Jesus is the song of life, Jesus is the song of joy, Jesus is the song of love; Jesus gives His song to me.

    He calms my hurts and dries my tears, He gives me strength to face my fears. He sends His grace thro' all my years, He gives His song to me. (chorus)

    My Savior, Jesus, I'll adore, My weary soul He will restore,
    I'll praise His name forevermore, He'll give His song to me.

    Will, I may be coming across as not being sympathetic and compassionate to your plea today. Please do not take it that way. My heart is breaking for you and your family. I have a son a few years older than you (Matthew), who also has the same disease as you and a young family. So I understand where you are coming from. Most importantly, Jesus understands your feelings as well. He does not blame you or reject you because you have doubts and anger. He loves you, and He wants to wrap His arms of love around you calm your fears. He wants to be your song as well. And that is my prayer for you: That Jesus will bring His peace to your heart so that you can sing again. Amen.

  8. Will, as I read this I have no words that would ease what you feel, nor any solution. I can only offer my own ethos: we all face death at one point and someone who truly loves life never wants to see it end. I have seen many of my friends and family past through the years, always hoping that they past to a better place, but who knows. I live in the world of known I am one who solves this world's problems and when I leave it I want to have known that along the way I made someone's life better for knowing me. So go out the way you came in fighting the entire way, doing what you love to the bitter end knowing that the lives you have touched will carry your spirit and passion of this life with them for the remaining part of theirs. Go with pride and if their is another side to this saga I will certainly be there with you when my time has come. I love you my CHS brother
    Ben Day

  9. Dear Will,

    Thank you for sharing your heart with us. I so agree w/ the other posters here -- not a horrible Christian, dear brother in Christ. Sometimes God looks cruel and no other explanation seems reasonable or possible until he breaks through the darkness.

    I am sad you and your family will miss out on so much that you had expected to have. I believe though that one day you (like the rest of us) will look at the pain and suffering you've experienced and consider it light and momentary troubles compared to the glory that awaits you. As will Kerri, as will your children. Even if this will not comfort you right now, it is true.

    My own mother died when I was nine. Unlike in your children's situation, my mother was an abusive alcoholic and killed herself. Only recently have I stopped asking God, "Really? Was that necessary? Couldn't there have been another path to you?" God has used the horror of my own life experiences to enable me to be present for others in theirs. He thinks it is worth it.

    This is not in any way to minimize the grief you feel for you, your wife and children . . . just to say that if someone like I have found God to heal and sustain me even when my own parents weren't there, then there is much more hope for your kids than you realize.

    Grieving w/ you and also trusting God's goodness to come through -- Kristi Iachetta