MS Status Update (Aug. 7, 2013)

When I was in the hospital in February I so appreciated your warm and supportive comments on my blog, Facebook, etc. It was during that time that I realized just how much your support and encouragement means to me. It is in that realization that I write this post.

I have experienced some of my darkest and most frustrating days and hours in the last couple of weeks. Though I have recovered so much in the past six months, there are still a great many things I cannot do, and deficits that I struggle with regularly.

Over the weekend, I hit my head hard three times in a span of a couple of hours, the last time so hard that I wrenched my neck quite forcefully. The person I was with was stunned, thinking I was being a total moron (as indeed it appeared so) and I had to explain that my sense of proprioception (where my body is in space) is damaged. I have days where I hurt myself in various ways throughout the day.

My feet and legs continue to bother me a great deal. I feel permanently broken, though I realize continued recovery is possible for six more months or so.

Some days speaking is incredibly difficult, not physically, but mentally. I often cannot locate a word I am looking for which is embarrassing and, as you can imagine, quite deeply distressing to me given my chosen professions. Like everything else, this comes and goes, waxes and wanes.

My family went to Cedar Point recently and I think that’s where I realized that, despite appearances, I am more disabled than I look. I could barely get around, even with my cane. We spent less than three hours in the park.

I have also experienced my first twinges of fear and dread in the last few weeks. It is relatively easy to brace yourself for a brief hospital stay and a few months of recovery. It is quite another thing when you realize it may  be time to begin saying goodbye to pieces of your life.

Though I know you who love me cannot stay on a permanent state of alert, I just wanted to make this public. It’s a battle I am fighting mostly alone now, and it gets hard because I know I look way healthier than I am. Though I continue to be grateful for what I have recovered, what I have lost weighs heavy on me these days. I often feel this spectre hanging over me that is perhaps best described as a “ruthless hum of dread.” I have not lost hope, I am not in a major depression, and I still experience deep joy in my life. But I notice that hum in the background more days than not. I know even this will in time be redeemed in my life,  used to grow me deeper. It will provide ways for me to encourage others, and will finally be taken up into the One in whom I rest assured that everything belongs — where not a tear is wasted, where no suffering is ever in vain,  and where even the darkness is as light.

I am confident of this. Still, I must walk through my valleys, and feel the icy press of fear, discouragement, self-pity, anger, and whatever else is to come. I know this, and this is my cross to bear, not yours. But somehow writing it down makes it better, as I refuse to treat my situation like some evil which is so great it dare not be spoken. It isn’t that great and as long as I can type I will continue to speak, both so that I will not fear, and that others may take courage beneath the weight of their own crosses.

Thank you for reading. It is a way of being with me that means more than you know.

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I am a pastor and licensed counselor in Michigan. I have been a pastor since 1994. In 2002, my wife and I planted the church we are pastoring now. I do casework here and there, and also teach for Spring Arbor University part-time.

Posted in MS Status Updates
14 comments on “MS Status Update (Aug. 7, 2013)
  1. Kim Nebel says:

    What you said about mourning the loss of things that won’t be recovered struck a recognition in me. I experience a piece of this as a result of aging. I turn 57 in a month, and it becomes more difficult to stuff back the awareness that I am aging, that things I’m used to doing will inevitably be lost, and yet here I will remain. I don’t think that we’re ever ready for this. An old pastor of mine once said “Jesus came in the flesh so he could experience what we experience, but he never had to get old! He died when he was 33!”
    It’s not the vanity thing that gets me, but rather facing the loss of independence, having to rely on God and others rather than just me, and the fear that they will not catch me, but let me fall. My body becoming a prison that holds me here, when I am no longer able to do the things that I cherish. Yet more than anything I want to experience peace, contentment, awareness of being in the Presence of God. I don’t want to be bitter, angry, and miserable like my mom is. I have to be able to accept and flow through the changes life brings my way. Ultimately, I have to have faith that God is going to catch me, and hold me close to His heart. I even wonder, “well what about dementia, what if I lose my awareness of God?”
    You’re not alone. None of us, no not one, is invincible or .indestructible in the flesh. People who are uncomfortable with you talking about it, are likely facing extreme difficulty in accepting their own vulnerability.
    God is sovereign, He doesn’t make mistakes, He is all powerful and everything He does is for our ultimate good. He is pure love, and His love for us is the purest love we can ever experience. He made our bodies frail and destructible. He knew what He was doing in this. It is a good thing.

    • Yep. We’re all going to face this eventually, one way or another. Great reflections, Kim. I don’t want to be bitter, angry, and miserable either.

      • Kim Nebel says:

        It occurs to me that, the sadness I feel when seeing or hearing of what you’re going through, is deeper than what I share with you. The survival instinct kicks in, and I tell myself that is what you need to hear………. “buck up, keep moving, you can do it!….”but maybe sometimes it’s not………maybe it comes off sounding a coolness I don’t actually feel, maybe it disguises that I am grieving with you , and desperately grasping for something we can hold on to so we don’t drown …….. we have to keep swimming……..

      • This is so sweet and reflective. Thank you so much!

  2. kathy paris says:

    I will not pretend to even understand what it would be like to face MS and its impact on your life-body and soul. What a beautiful and articulate explanation of how you are feeling and how much God loves us even through this painful journey! I love reading your blogs and it gives me insight and inspiration. Love you, Dave

  3. Kelly Toone says:

    Beautifully written Dave. You remain in my prayers. I think what I liked about this post was your ability to articulate your thoughts, fears etc with simple truth…it evoked empathy for you but not pity. (does that make sense) Love your transparency! -Kelly Toone

    • Thanks, Kelly. Most of what I write is theoretical and abstract. These updates give me a chance to be a bit more personal and intimate and I’m grateful for the opportunity. Thanks for your encouragement.

  4. Steve says:

    Thank you for the very helpful and articulate update on what you are facing. It helps guide my prayers for you and your family. You are not alone. Love you my friend.

  5. Jeff Vannest says:

    Love you, man

  6. Charlie Richards says:

    I’m at a Taco Bell near Lansing, SAU reading this. I wish there were ways to “fix this” because that’s what men are supposed to do!!! My sentiment is the same as Jeff’s….I love you, appreciate the person you are, and the role you play in my life.

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