I need some input

Normally when I post to this blog, I do so in the role of one offering ideas, explanations, insights and sometimes humor. I don’t get many comments so I don’t think of this as going the other way. But I am at a point where your responses can mean a great deal.

I am nearing the point where decisions will have to be made regarding my choice of treatment, decisions that have major consequences for how I live the rest of my life. In its simplest form, it reduces to this: do I want to take the least invasive approach which will allow me to continue living as I am now, but with the likelihood of a shorter life span, or do I want to take a course that will probably result in a cure but may deprive me of speech?

If you know me at all, and many of you certainly do, talking has always been what I do. I’m a teacher by nature and my greatest joys in life have been those few but precious times when what I say has made a difference in someone else’s life. It’s hard to imagine me still being me if I couldn’t do that. So what would be the point of living longer if that was the condition? What kind of life would it be to not be able to tell people that I love them? How could I deprive my wife of the words “I love you?”

But of course, I would have to be alive to do that. So choosing to keep my speech but possibly die sooner has a similar effect. Do I go for quality or quantity? How does that affect those who love me? Do they get a choice in this?

I have just about worn out the “?” key on my keyboard. So many questions and no real answers. I’m really grappling with a big one here. I’m going for a biopsy on Thursday that will define the parameters of this decision more clearly and, while I want to think that I will know what to do, I fear I won’t.

Prayer is central to this. I believe there is a “God way” through everything and in all honesty I’m really at peace knowing that I’ll get both the guidance and the Grace to live in a way most pleasing and useful to Him. That for me really illuminates the decision. Which choice makes me a more useful tool in His hands? I don’t believe that death is a tragedy. I do believe that a life without purpose is.

Before all else, I am a Christian. Jesus said that there is no greater love than when one lays down one’s life for a friend. But what does it mean to lay down your life? It certainly means dying in one sense. But it could also mean laying aside the life I now have for another one, one that I do not choose, but one that nonetheless fulfills my vocation. Do I lay down my life by shortening it or by sacrificing an aspect of it? Again, more questions than answers.

This has been an unusual post. I always take time to craft my work, write it, set it aside, return to it, refine it, produce the very best I can with the talent I have been given. But this has been more of a stream of thought, musing out loud and not really attending to the craft, because the craft may very well be in my willingness to expose my fear, my confusion; to be something I rarely am, unpolished.

I am not asking for answers, though I will certainly accept them. As for pity, I can produce enough of that for both of us if I give in to that impulse, so none is needed. I’m not saying that I don’t need anything. I just don’t know what I need. All I know is that whatever I need, it will come from you whom I love. I would appreciate comments just to know you have read this. Maybe you are as baffled as I am. That would be good to know. Maybe you have some insight. Also, good to know. Maybe you feel compelled to offer advice because you feel obligated. I won’t object.

I hope that this hasn’t been to much of a downer for anyone. These are the kinds of decisions each of us will likely have to make. So the real irony of all this is that you may be answering these questions as much for yourselves as for my benefit. So let’s be joyful, and let’s be grateful for the love we’ve shared.


Filed under Christianity, memoir, Recovery

8 Responses to I need some input

  1. Pat Schultz

    Steve, please bear with me as I tell you this story. In February 2005, my husband had some severe heart issues. His cardiologist called me at home and told me if he lived another four months, it would be surprising. He said to be prepared to be talking to Jack one minute and he might be gone the next. Since Jack had, had two relatives who passed exactly that way, I knew that wasn’t an unusual thing in his family. When Jack got out of the hospital, I would come home from work not knowing what I would find, because he insisted on doing many things I felt were too strenuous or difficult. In the course of my many “please be carefuls,” he very firmly told me: “I refuse to stop living to keep from dying.” Since that statement, I have lived my life w/that in mind. I chose to have him as long as I could, in his curmudgeon-like, sometimes crazy state – that I happen to love actually, rather than have him not doing things he loves because he’s afraid his craziness might kill him. I’m not as spiritual as you Steve, but I always have believed in God’s will. In my family when Jack – who has outlived his expectancy by many many years, has medical issues – they pray for God’s will be done, and may we all have the strength to accept. Yes, your situation is different, and to me more dire, you must decide to live w/o speech, which you love, or to live a shorter time. As you decide, please look at any other ways you may be able to communicate. In all the spiritual, there may be some technical ways that offer you continued communication. You and Charlotte are such a lively, lovely couple I pray there is a deciding moment in this challenge where the answer becomes clear. And by the way – this discussion isn’t a downer – it’s life and caring and indeed – joy that there are options and God has allowed you to have options. God bless you.

  2. Sue Seaglund

    I can’t imagine facing this kind of decision. I like to believe I’d be all about living longer to share time with those I love. The Steve I know will find a way to communicate just as effectively without speech. Love & Hugs 😘

  3. Steve

    The people who love me do have a say in this. I guess my real quandary is how do I choose a course that they would not regret that I made. I wonder if I have been to vain in seeking affection by cleverness and self-interest. I do not believe for a moment that God caused this, but I do believe that my response to it will result in a better understanding of myself and a closer relationship with Him. Thanks for weighing in. Things get little clearer every time people reach out to me.

  4. Steve

    Pat, thanks for sharing that story. “I refuse to stop living to keep from dying.” These are words which resonate as I choose my path. Your concern and love mean everything to me. We’ve been down this road before and I’m glad you’re with me again.

  5. Kathy Harris

    Dear Steve – I of course would not try to tell you what decision to make, but as your long -time friend, the way I feel about you is that I’d rather have you around without speech than not around! I don’t care if you can talk as I know we’d find ways to communicate. I had an aunt and uncle who could neither speak nor hear – they were happily together many years and always joined family events. Of course, they knew sign language – which I can imagine you (and probably Charlotte if I know her) learning. But – I’m speaking as one who loves you- not the one whose life it is to live. The decision is only yours and whatever you decide is the right decision. I agree that God did not give you this problem – but will be with you as you go through it. My experience is when I go through difficult times I learn things I never expected. Anyway, just know we’re all with you whatever you decide. Much love, Kathy

  6. Lucy

    Dear Steve… it saddens me that are you even have to THINK about these things but you do and you are and you’ve asked for input. So here’s what I have to contribute which may or may not be helpful.

    The sister of a friend of mine has ALS and when I met her, she had already lost the ability to speak. But she had this amazing computer. She typed in what she wanted to say and the computer ‘voiced’ it for her.

    I guess the main thought I want to share is perhaps you might add this type of communication into your thought process while trying to make your decision.

    You’ve made many good decisions along the way so far Steve. You’ll make the decision that’s right for your life this time too.

    Love you and love to Charlotte too… Lucy

  7. Steve

    I already replied to you via email, but I’ll paste it here so others can read it.

    Thanks for that advice. I loaded an app on my phone that does text to speech and it works pretty well. There are some very sophisticated devices out there. If it ever comes to that, I know I’ll have the tools I need to handle day-to-day tasks. What I would miss more, though, is the easy banter that friends have, not so much communications as it is community.

    I wish I had as much faith in my decision-making abilities as you do! But I made a few: getting sober, marrying Charlotte, helping others. I don’t regret the mistakes I’ve made. That would be pretty useless. So now we’re gathering as much info as we can, we’re getting as many expert opinions as possible and we’re not going it alone. That’s probably the best decision I’ve made so far in dealing with this. Thank Charlotte for that.

    I keep posting and I’ll shut of the approval requirement now that I’ve added an anti-spam application to the site.

  8. Steve


    That seems to be the prevailing sentiment. I’ve watched Charlotte struggle with my swallowing issues for nine years and I just dread the thought of how much of a burden it will be for her. But I think she would absolutely prefer that I be here in whatever condition resulted from saving my life. I know you would have taken Roger on any terms if it kept him alive. How amazing it is that we’ve known each other long enough to be sharing these kinds of major life choices. I’ve never really told you how precious your friendship is to me, but thirty plus years of sharing someone else’s life is a privilege and a gift. Thanks for your thoughts.

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