MS Update — March 6, 2015

I got out of the hospital two years ago (my first MS-related hospitalization in nearly 25 years with the disease) and it has been a long, slow, incredibly frustrating struggle back to health and strength. But it was working. Three weeks ago I was feeling so good I started Couch 2 5K, getting back to my love of running. For two weeks I felt absolutely amazing, like I almost really had my life back.

Then a slow-moving but sudden numbness and tingling, starting in feet, climbing up legs, up to my waist, torso, butt. Muscles getting weaker. Grabbing the cane again to walk. After feeling the elation again of strength and health the last few months, walking almost completely without the cane for almost six months, running, somehow it hurts so much worse this time to feel like I’m losing it all again.

Five minutes ago, writing this post, was the first time I have shed tears about this condition in 18 years. All through the events of two years ago — no tears.

But done with that now. Time to look up again.

From a song I composed during a flareup 18 years ago:

“Now days roll by where it’s all I’ve got
Just to make my coffee and pour a cup
Before I stumble to bed, turn out the light, pray for strength for what comes next.”

And what comes next? Another trip to Beaumont. Hoping it goes away or gets better. Hoping one day I can run again but realizing maybe I’m really going to have to be a bike person.

No attempts here to be a hero, or to inspire anyone.

While I’m not scared physically (I’m not sure I have the capacity anymore to care what happens to my physical body — I guess we’ll see), I’m so frustrated and disappointed to be back in this place again.

“But Pastor Dave, what are your words of wisdom? What message can you bring us to lift our spirits, give us hope, show us the bright side, demonstrate that God, Christ, and their matchless love ultimately prevail?”

“Yeah — where’s the soaring language?”

“Hey everybody — be quiet. He’s gonna say something!!”

Me: I’m getting kind of tired. I think I’ll go home now.

Shit.

It doesn’t help that I’m off Facebook for Lent, so I feel really isolated. In times like this, I guess, you just try to remember what you know to be true.

I am loved.

I am loved.

I am loved.

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I am a licensed counselor in Michigan. I also teach for Spring Arbor University part-time.

Posted in MS Status Updates
20 comments on “MS Update — March 6, 2015
  1. hippylostintime says:

    You are loved, you are loved, you are loved. You are inspirational in your honesty, and you are not alone. Praying for you right now, friend.

  2. Becky Phillips says:

    You are loved! Praying for you friend.

  3. Katrina says:

    I’m sorry. I cannot imagine how much this sucks.

    • Thanks for your note. I so appreciate my Facebook buddies coming to me when I can’t come to them! 🙂

      • Katrina says:

        That does seem an unfortunate Lent choice, huh? :0) I’ve talked about doing the same at random times, but most of my friends and all family are out of state, and my husband usually talks me right out of it. (He knows what a bear I’d be. :0) )

      • Well — I have long said I despise Facebook. And I do despise it, as a platform. But I never fully realized its value to me as a place to hangout with the people I love and who love me. I really didn’t think I’d miss it half as much as I do. It’s the best version of community in my life since Varsity Choir. It’s the only thing that even compares. I love my church and the people there so much, but in that context I’m pretty much the Sally Bird of the group so it can never be to me what I hope it is to others.

        Yes, for you it sounds like you shouldn’t ever bother trying to give it up. That’d be like giving up family for Lent. 🙂 I’ve kind of realized it feels that way for me a little bit too. But I’m going to finish this out, and I’ll return to Facebook having learned so much and so thankful for the blessing it is to me.

  4. Irene Wizynajtys says:

    Oh Dave I could just cry. I am so sorry and I’ll be praying.

  5. ngalassini says:

    You are loved by so many! Most importantly, you are loved by the One whose love has no boundaries. Loved completely and fully! Praying for you…for strength on the inside and throughout to the outside. Peace.

  6. Patrick Hale says:

    Much love brother. Praying and thinking about you. No words of wisdom or inspiration is just fine with me. Sometimes sucky situations just suck.

    But know this…You are the best my friend…the best.

    For a whole host of reasons mortality and short time we have on this earth have been on my mind. When I think about the big moments that shaped who I am….I think a lot about those days and months we spent hanging out together after Cindy died. It’s not a time or experience I can quite put it into words…deep sorrow breeds bonds that are unexplainable….I think you know what I’m talking about.

    There are people in life you never forget… Your friendship in that time set down deep roots for a lifetime.

    I have cherished and loved your candor, compassion and the twisty way you see the world…as much as I think I understand my faith and what I believe…somehow you help me challenge my version of the truth…stretch my thinking and find deeper meaning. You rock my friend.

    Just wanted you to know how important you are to me…miles distance…disease…Facebook boycotts…none of it can change how much I respect and love you…and I always will. So yeah….you are loved.

    • Dude, the feeling is totally mutual. And you’re right. Those days after Cindy died were the worst, darkest days, but we definitely forged the real deal there didn’t we? Yes sir, you are the man, forever and I echo back to you everything you said here. I couldn’t have said it better myself, my brother. I love you.

  7. Liz Morin says:

    I love you. All of the time. One of the most important to me in my life/heart.

  8. Cindy Kish says:

    I can’t even imagine. Since I can’t even imagine the struggle you live I can’t imagine the extreme disappointment and frustration you must be feeling. I don’t have proper words to say how I feel. So, I’ll just say I am so sorry for your struggle. I’m sorry for hospitals stays. I’m sorry you feel lonely. I wish you great nurses great food and a very short visit there.

  9. Ruth says:

    Hi Dave, I’ve just read several of your blog posts on this blog and your other one. It seems like during this season of Lent you are really in a truly authentic, grace asking, grace filled, honest place. Stripped down. We don’t plan these things…but it seems like you’re experiencing the season of lent just the way you’re supposed to, possibly to hear from God in some new way. Interesting…I’m kind of excited and anticipating what new thoughts are heading your way…not because I’m expecting you to be super spiritual or inspirational. I just really enjoy authentic, courageous, real life people living out their very real lives trusting God even when life is shitty.
    Sorry about the running part…but I can tell you, I’m a bike rider and it’s quite nice :).
    Peace to you…may you sense the presence of God close to you in this season, never leaving or forsaking you.
    (You’re missed on Facebook 🙂
    Ruth

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