Another Major Milestone

My heart is carrying another sad milestone today…the year anniversary of my ALS diagnosis.  I’m so over sad milestones.  I really long for a milestone that marks fun, life-giving progress.  Instead, my mind is flooded, once again, with the anguish of “this time last year”…and there was quite a bit of anguish leading up to September 18, 2017…I had been through a series of tests the month prior that ended with an MRI to see if there was any nerve obstruction causing my mobility issues at the time.  I got a call from the neurologist’s office on Friday September 15th to set up an appointment first thing the following Monday morning.  The doctor wanted to discuss the MRI results and requested that I please bring my husband.  Ugh, my heart sank.  I knew it wasn’t going to be good news but prayed desperately all weekend long that I had a cancerous tumor causing my neurological issues…or some other obstruction that came with treatment options (you know your options are pretty bad when you’re praying for cancer) but I knew enough about my symptoms to know ALS was a very real possibility.  So, for 2 1/2 days, Rolf and I walked around in a heavy, burdened stupor stuck between just wanting to rip the band aid off and absolutely not wanting Monday to come.  Well, Monday did come and this is what it looked like on our way to the 8am appointment…

September 18, 2017

The foggy haze that morning matched the mood.


I’m a big musical theater fan…especially Rogers & Hammerstein musicals (FYI, my all-time, old-school favorite is The Sound of Music but that has nothing to do with what I’m talking about here, I digress).  The song “You’ll Never Walk Alone” from the Rogers & Hammerstein musical Carousel has been occupying my mind this past week…you know, you’ve heard it even if you haven’t seen the musical…a gazillion artists have recorded it.  The lyrics go like this:

When you walk through a storm hold your head up high and don’t be afraid of the dark.

At the end of the storm is a golden sky and the sweet silver song of a lark.

Walk on through the wind, walk on through the rain,

Though your dreams be tossed and blown.

Walk on, walk on with hope in your heart and you’ll never walk alone.

You’ll never walk alone.

It’s fascinating to me how random things pop into your head and if you give the thought a second of your time, it can lead you to some interesting places.  For example, the first line of this song came to mind last week and I sang it over and over until I finally took the time to look up the lyrics.  The end of the third line immediately jumped off the screen …“Though your dreams be tossed and blown”…and I started to cry.  That one line struck a chord in my heart and summed up the epicenter of my heartbreak since my ALS diagnosis.  I’ve touched on this before but I would describe it like this…I lost a handful of specific dreams when I lost Rudy, but ALS wiped out the whole kit and caboodle.  If ever I have felt like my dreams have been tossed and blown, it is now.  I think this can be easily misunderstood or misinterpreted for a sense of purpose and it’s more subjective than that.  I have no doubt my life has purpose (as long as there is breath, there is purpose) and that God is using my present circumstances in a purposeful way but my “purpose” isn’t necessarily mine…my dreams, however, are born of me and losing them is losing a big part of me (another aspect of the disappearing act I mentioned in my last post).  For a year I’ve been trying to figure out what I’m supposed to do with the empty spaces in me that used to be occupied by my dreams?  In her podcast with Alan Alda, Kate Bowler poses a similar question “What is it like to live after you give up on some of your most deeply cherished…” (I’ll insert here) dreams?  She talks of finding a new language to live in this new reality.  I can relate to that because I don’t think the answer to my yearlong question is as simple as “When a dream dies? Come up with a new dream”.  What if the landscape is so completely changed that the old way of doing life is completely obsolete requiring a new language to be formed and different approaches to life to be adopted…what if you can’t fight it or simply insist on doing things as you did before…what if you are forced to go with it and make the necessary changes?  What does that look like?  (kinda like in the last scene of Charlton Heston’s Planet of the Apes when- spoiler alert -he realizes he’s actually in New York City after all…Whhhaaatttt?!)  I know, I’m rambling and sounding a tad bit melodramatic but I guess that’s how I’m feeling today…rambled and melodramatic.  It’s in moments like these where verses like Romans 8:6 have practical relevance…

“The mind governed by the flesh is death, but the mind governed by the Spirit is life and peace.”  

Yep, it’s true…and, in addition, as time goes on and more and more of myself is emptied, more of God is revealed and there is life and peace in that place.  There is.  I’m experiencing it…maybe not to the extent I long for today but in one tiny step at a time.  And for that I am grateful.




10 thoughts on “Another Major Milestone

  1. Trish,
    I’m sitting here in an airport in Connecticut as I read your post… so many emotions to process.
    You are truly one of God’s beautiful bright lights, just as Rudy is.
    You make this world better. Thank you for sharing all of you with us.
    You exemplify love.
    Bless you.
    Love, John

  2. There is NOT ONE THING that is rambly or melodramatic in this, my dearest Trish. Not a dang thing. You have captured the pathos of this diagnosis/lived experience exquisitely well. And, oh!, how I wish you did not have to!

    However – and that is a terrible word in this context – however . . . you do have to write them. And sweetie, you are doing it beautifully.

    This is not a dream you chose, or even imagined. It’s the hard, daily truth. Your skillful, heartfelt writing about it gives us a window, a glimpse, into what this is like. That is pure gift, Trish. I thank you for it. I love you.

  3. Thanks for bringing that song to mind- brought a tear to my eye as my dad sang it. I am sad you may not live many of your dreams… but know you have fulfilled an eternal purpose in helping others fulfill a dream. You have been a dream- maker!!!! I love you!!!!

  4. We saw Carousel 10 days ago in NYC. Since I first saw Carousel, decades ago, that song has always made me feel very sad.

    I feared hearing it this time – I feared I’d cry so loud I’d embarrass John and have to leave the theatre. But like most of my other fears – the fear of the fear was worse then the reality.

    During the play when that song began I bravely leaned forward fully opening myself to the experience of the orchestra, the singing and the dreaded words.

    I heard the lines I feared but I also heard something that reminded me that there is still love and beauty out there.

    You Trish exude bravery, love and beauty and you encourage us to walk on. Love J&J

  5. I also saw Carousel this summer in NYC and it is a tremendously powerful song.
    Life stinks sometimes but our God is still glorified through all of this – through your witness right now. You praise Him in the midst of the hardest of hard things.Love you, Trish! Terry
    Psalm 42:11 (NIV)
    Why, my soul, are you downcast?
    Why so disturbed within me?
    Put your hope in God,
    for I will yet praise him,
    my Savior and my God.

  6. A.M.A.Z.I.N.G! That’s you, Trish and your God-Filled spirit. I continue to pray for you, Rolf, Olivia, Wilson & Max. I love you dearly. May the sun (Son) continue to shine on you throughout your day.

  7. Trish, if you don’t mind I’m going to start printing these and sharing them with some of our classes. As an educator I am trying to have students ask deep and hard questions and every post of your’s pulls them out. As you asked, “how do you move on after giving up a dream” – and then I personally ask “How does Trish keep praising? You move me to tears every time sweetie – praising Him for you – because you help me realize how shallow my roots are and the only way to grow is to sink deeper into Him. We love you.

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