Cruel Irony

It has been awhile since I shared an update on my physical status…although I’m still recovering from the heightened activity of February and counting on regaining some energy, I’ve definitely experienced the gradual progression of this disease’s symptoms in general the past couple of months.  The greatest difference is in my arm strength.  I’m dropping things more consistently and my upper arms have found their resting place on my torso as if my upper body were wedged in a barrel.  I need assistance, for example, lifting up my arms to put on deodorant.  I can still write and type but my fingers are definitely beginning to stiffen.  It’s disheartening, for sure.  I’m beginning to recognize a pattern in my process of this disease…just like with the loss of function in my legs where my symptoms first surfaced, I started with feeling annoyed by my lack of arm strength and then concerned over the practical implications and now I’m starting to feel the emotional impact.  Once again, expectations need to be adjusted and transitions made.  Ugh.

My hospice counselor asked me last month if I was experiencing any anger and it got me thinking about my full circle relationship with anger.  Although anger hasn’t surfaced yet for me in my ALS journey, I remember struggling with anger in particular as a young mom when demands were high and Rolf traveled a ton for his job.  It must have been something I was concerned about at the time because I came across a stack of index cards recently that I compiled with every bible verse on anger that I could find.  😉  I remember reciting those verses over and over, doing the hard work of growing and praying that God would lift my anger.  Not that anger is all bad or isn’t an appropriate emotion at times but I was in need of a big perspective change at that time in my life and my prayers were thankfully answered.   Perspective is key, I think, and Rudy taught us a great deal in that department.  For whatever reason, Rolf and I never asked “Why us?” when it came to life with Rudy…instead we honestly approached it with the perspective “Why not us?” and it seems to be the same with my ALS.  Don’t get me wrong, I have a lot of questions for God but “Why me?” isn’t one of them and anger isn’t my go-to emotion right now.  What I do battle, however, is deep, deep disappointment…and it is, at times, crushing.

I’ve mentioned my disappointment before as it relates to the children and grieving future life with them and their families but lately my disappointment has been centered on the life Rolf and I are so close to sharing.  I turned 53 last week and with Olivia nearing the end of her junior year, Rolf and I are nearing a new season.  The cruel irony is that my life is ending just as we “successfully” launch our youngest.  Ironic because back when the demands of raising a young family were high and finances were low, I dreamt about life with less stress and a little disposable income…I knew all our hard work was going to pay off one day in a season with room to breathe and time to rediscover each other.  Oh, I know, the empty nest years can have their own difficult adjustments and stresses but Rolf and I seem poised to start that transition strong and I’m devastated we aren’t going to be able to test it…and, more importantly, share it.

It’s a vulnerable time…my growing physical limitations are making me feel more and more vulnerable and there is a lot going on in general leaving us all feeling a little raw and fragile.  Will you please pray for strength of heart and mind?  My hyper awareness of mortality and loss and suffering today seems appropriate for the start of Lent, I guess.

My brother sent me this Lenten prayer yesterday and it certainly is a thoughtful meditation as we prepare our hearts to commemorate the death and resurrection of Christ and it seems particularly applicable to me today.



Olivia’s latest artwork…a precious gift for my bday…quoting one of our favorite Abba songs in Mama Mia 2.

Bless you friends!  Thank you for your love and prayers!!



11 thoughts on “Cruel Irony

  1. That is one sobering but amazing poem… some point there is glorious life. Love you so much…. and am disappointed with you!!!! Can’t wait for the day we will all share where all that disappointment is over!!!!

  2. Your words are vulnerable,powerful, and inspiring; thank you for writing them.
    Olivia’s post is just beautiful.

  3. Dear Lord,

    As Trish lives well
    In the face of death
    May she feel your resurrection power
    Strengthen her heart and mind
    Be her song in the night🎼

  4. Thank you for sharing dear Trish! Yes! I will pray for strength of heart and mind for you! May our loving Father be so very near to you and your family! ❤️

  5. I am praying for you, my friend. Strength for heart and mind and body too, to bear up under disappointment as well as the sweet things that happen day to day. I love you! I love Olivia’s card, too, so pretty, like you!

  6. Ah, yes . . . the ache is huge, the loss is tangible. And I am so sorry you and Rolf must walk this particular path and not the one you dreamed about and planned for. Praying regularly that there will be flashes of beauty, grace and peace even along this hard road that is yours to walk. Your honesty is powerful and helpful. Thank you.

  7. Thought-provoking prayer as we begin Lent. Beautiful painting by Olivia. And prayers (always prayers) for you my sweet friend. May the Lord bless you with a meaningful 40 days! Sending much LOVE,

  8. Good Morning sweet Trish. Each Sunday morning since our reunion in Goleta/Santa Barbara I approach the day a little differently after our experience with you and your precious family at your home
    Church. There is a little extra pep in my step each Sunday morning as I approach our worship service remembering what a wonderful service we had with you. Your enthusiasm with life and your honesty about how you and your family are is remarkable! I pray for your strength of heart and mind as you continue to navigate this journey. You are a blessing and inspiration to so many! I love you dearly! 🥰

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