A New First

Back in the day when it was uncool to kiss your mom in public, my kids had two options. They could either voluntarily give me a quick kiss on the cheek OR they had to endure a big attention-seeking kiss from me that often lingered way too long. I thought about that when Max headed back to school a couple of weeks ago. I laid motionless as he hugged and kissed me good-bye. Oh how I longed to wrap my arms around him, give him a big kiss and linger…for a really long time. I sure miss those simpler days.

I experienced a new first recently. I said “F&ck you!” to Rolf in anger…first time in 27 years…and, no, I wasn’t angry at my disease, I was straight up angry at Rolf. Fortunately the visceral impact was diminished quite a bit by the fact that I had to repeat myself five times and ultimately spell it out to be understood.

Speaking of visceral experiences, I also recently thought a little too long about taking my life. I can honestly say I have never felt that level of desperation in my lifetime. The urge passed and, of course, I can’t physically do it anyway but it is a fleeting thought made more complicated by the fact that physician-assisted suicide is legal in California. I know that a lot of people worked hard to get that law passed in 2016 and it brings comfort to some but selfishly I wish it wasn’t even an option because it feels like a strange carrot being dangled in front of my suffering body. That’s not how I want my story to end.

I spent a large portion of my adult life working hard to preserve life and I always lived with the mantra, “Where there is breath there is purpose.” In a perfect world I don’t think our bodies would outlive our minds or our minds would outlive our bodies. I envision we’d all just go to sleep and not wake up when our time came. But the world isn’t perfect and my convictions are being tested beyond what I ever dreamed. I’m learning over and over that life is one big exercise in discovering purpose and beauty in all the imperfection. I want to live my life out naturally and experience the purpose of my final moments in word but the living it out is hard and frightening. It’s a classic “easier said than done”. 🙂 Please pray for courage and joy and laughter and all things light and hopeful. I said to Rolf and a friend the other day that we won’t get through this unscathed or without a few war wounds along the way but it doesn’t have to define how this story ends. I will continue to count on there being purpose in every breath…especially when I consider who the Giver of my next breath is.

But, you know what? Even if my mantra is untrue and I actually outlive my purpose, I have to remind myself from time to time that there is great value in being present if only to see purpose being lived out in those I love, like I did this weekend watching Wilson preach…

16 thoughts on “A New First

  1. Yea! Wilson preached! If his inherited the smart gene or sensitive gene, or choose the great example to drive the point home, then THAT must have been a great treat and pure joy

    Thanks for giving me glimpses of your journey. And Rolf, try harder or to screw up!

    You are all in our thoughts and prayers, all the time.

    Joan Wimberly

    Sent from my iPhone

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  2. Dearest Trish,

    I wish I could take away this helplessness. I pray that you would not be dealing with this awful disease. I cherish our memories at Cottey College. You are an exceptional woman. Please know that I think of you daily. Prayers, love and hugs to you, Rolf and your family and friends. ♡
    Angela from Nebraska

  3. I have often thought about what I would do if I knew I was dying and wouldn’t recover…on one hand I think it is a decent thing to offer death to the suffering…like putting a horse or another large animal out of its misery. But on the other, we humans carry so much hope and striving to preserve ourselves (maybe for some because they fear death) that dying seems like a worse thing than suffering. Ultimately, we have to choose our path in life…to not go silently into the night, to rage against the dying of the light, right? You are AMAZING. I’ve always thought how amazing Trish is…I want to be like her when I grow up…to have a light like hers…a spirit like hers. You are and have been one of the few people I’ve looked up to, and loved sincerely in this struggle we call life.
    I probably won’t walk in your shoes my dear Trish, but I know if I could take an ounce of the suffering away from you, I would, in fact, many of us would. Having thoughts on dying sooner is completely normal, it seems unfair that you should even have to voice it…probably would be the first thing I thought of!
    We’re still praying and cheering you on, and hoping for miracles for you. Keep up the fight as long as you can, as long as you want to, there’s really no wrong choice in my eyes. Lots of love and I’m so grateful to hear your voice as I read your words…hugs from afar! Your boys are so handsome and Liv is so gorgeous…you’ve done well…and sometimes Rolf can be cool too.

  4. Thank you for this beautiful post. It again touches me so deeply. You write from honestly and from a heart that has been and is again being refined by fire in ways that most of us do not have to endure. Yes, so many of us would take away your pain if we could. It feels even trivial to write that, because we can’t. But your letting us into your thoughts and despair and your cursing (which made me smile) and all that is wrapped up in this new journey of yours is a gift and allows us to live more fully. And it lets us know how to pray more specifically. Sending you much love tonight.

  5. Trish, I can’t imagine what Rolf might’ve done to deserve that verbal tongue lashing but I am going to land on the side that maybe he really deserved it! You go girl! In the current moment you have incredible purpose and so many people love you for your honesty and for your ability to speak your mind about what’s going on with you and everyone loves and respects you for that. You are not alone-even when it feels like you Are. Sent from my iPhone Ed Wimberly, Ph.D.

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  6. Precious Trish, chills..not at the statement of your utter desperation of considering taking your life – because i understand that (as horrid as that is and sounds), but at the moment you said…”like I did this weekend watching Wilson preach…” Wow, Wow, Wow! Trish how wonderful! You and Rolf have raised some Mighty, Incredible children (Young Adults!) I am so thankful that your children/family are/is so rooted in Jesus! I’m going back now to watch Wilson preach…Thank you so much for sharing. Lord, bring Trish an extra measure of peace, joy and comfort today. Remind her how much You love her Lord! Surround her with Your Ministering Angels! I ask all of this in Your Mighty and Powerful Name Jesus! Amen, Amen & Amen!!! I love you Trish, Melani

  7. Trish
    You are so brave and so wise. Thank you for sharing your wisdom with us. You have my prayers for you and your family.
    Sue

  8. Seeing Wilson preach was amazing …. and totally impacted by what I saw in His sweet and humble care for you dear mama!! Your courage and your smile through the horrors of this disease reveal your strong purpose. Love you much dear Squish.

  9. Trish, I am in awe of how brave,loving and selfless you are. I remember when I first met you. That light that surrounded you. You have been such a blessing to me. You have my prayers and love always.

  10. You will,speak truth until your last breath and it is painful and yet so refreshing. God is at work through you to a very confused world and he is answering questions that only one of his own can answer. Thank you for being a kingdom voice and finger. You are a “Pearl of Hreat Price.”
    Thank you Wilson…Well done.

  11. I’m at a loss of what to say as I have tears stream down my cheeks. You, my friend, are a blessing to me and so many. I don’t pretend to know and understand what you have gone through and are going through. But I can pray. And pray each day for you. I’m so sorry this has happened. Much love to you and Rolf and the kids.

  12. I ditto what everyone has said so eloquently. Trish, I make it a point to pray for you first any time I pray for others. I also remember Rolf and your children each time as well. I am so proud of you and your family representing Jesus so well! Wilson did a beautiful job teaching from a very well known passage. He hit the nail on the head and spoke in such a relevant and humble way. 😜😜. It’s all about the Kingdom, not our comfort. It’s about treating others with great respect in the big and the little moments. Powerful! You are such a powerful testimony Trish. Not what you are able or unable to do. It’s YOU that is the message. Keep on keeping on, in your transparency and your fight to be doing Kingdom living every day that you live. The struggle is real, and really painful. I can’t even know. But know you are greatly valued and loved. 💕. Anne

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