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…
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.