I apologize! This is an awful word and I don’t use it flippantly but ALS is an awful disease and sometimes it’s the only expression that satisfies. Ironically, it’s the only word I can still enunciate perfectly so there is twisted personal value for me in using it as well. 😉
Friends, I am in the midst of the toughest adjustment to date in the progression of this disease and it’s a hard hurdle to clear…I’ve lost practical use of my arms. I feel like I’m wearing cement sleeves and I can’t lift them anymore, my fingers are beginning to curl and I am no longer able to grip. As a result, my level of independence has plummeted and my level of frustration is skyrocketing.
I’ll spare you my long list of “things that frustrate” but the discouraging reality of losing my arm use is the seemingly endless domino effect of other issues that now need to be addressed…i.e. the threat of pressure sores and other skin issues because I can no longer adjust my position on my own or dehydration because I can’t lift a cup to drink so I’m not drinking as much throughout the day which leads to constipation, etc., etc., blah, blah, blah. I saw my neurologist Monday and we added 4 new medications to my daily regimen to combat all the emerging issues (note – I can barely swallow the 2 meds I’m currently taking). I’ve definitely been in a consistent progression for the past year and a half but there is a convergence of critical symptoms happening right now that is all consuming…and chipping away at my quality of life. It’s time to make a trip to the GI to discuss a feeding tube; I have a breathing machine I’m supposed to wear 8 hours a day and can only tolerate 2 1/2; and pretty much everything requires more energy than I have. To top it all off, I can no longer eat my favorite comfort foods and retail therapy has lost its allure. (Insert blog title here!!!!) There just isn’t a whole lot in a typical day for me that is light hearted and easy.
I don’t share all this to be pitied but to show the crazy extremes because in God’s precious mercy, there has also been a convergence of encouragement from many sources lately that I’m holding onto tightly as lifelines…
- For example, a friend from Boston sent me this song that speaks to my heartache: Click here
- My 90+ year old friend emailed me a copy of a devotional she’s reading and this excerpt resonated with the singer in me:
“Your Father is training you for a part the angels cannot sing, and His conservatory is the school of sorrows. Others have said that He sends sorrow to test you, yet this is not the case. He sends* sorrow to educate you, thereby providing you with the proper training for His heavenly choir. (*Personal note: I take issue with “sends”. I prefer “uses”.)
In the darkest night He is composing your song. In the valley He is tuning your voice. In the storm clouds He is deepening your range. In the rain showers He is sweetening your melody. In the cold He is giving your notes expression. And as you pass at times from hope to fear. He is perfecting the message of your lyrics.
Oh dear soul, do not despise your school of sorrow. It is bestowing on you a unique part in the heavenly song. ” -George Matheson
- Rolf forwarded me Richard Rohr’s daily meditation about my favorite – Julian of Norwich! Yay:
- …and so much more. Thank you all. God is using you.
Please pray for a quick adjustment to new systems of living, for emotional strength and physical contentedness in my long, motionless days and fitful nights. ‘Grateful for you!!!
Rudy’s courtyard is coming along. Rolf and the kids spent most of Saturday replanting and refurbishing the planter…it turned out great. All we need is a hummingbird feeder in the tree to finish is off, I think. A big thank you to those of you who have sent in a gift!! What a sweet encouragement to our whole family. ‘Grateful for you!!!
Thank you friends.
Rudy's Beat 
Your title is perfect! Losing control over any part of your body is fucked up and it sucks. What you haven’t lost is your fans: respect, love, and support – in fact that just keeps growing.
May 2 Corinthians 4:16 comfort and encourage:
“Therefore, we do not give up. Though our outer self is wasting away, our inner self is being renewed day by day.”
As you already know, He is our strength, our rock, our hope, our peace, our salvation, in whom we trust.
My heart aches for and with you, my sweet sister in Christ…I’ve spent so much time not understanding God’s will here. But I’ve also seen great examples of the Holy Spirit nearby. All I know is He is a BIG God and oh so good…that seems clear in the midst of sorrow. I can’t explain it to those that don’t live it, but I believe you understand full well.
I have said this word a few times myself over the last 2 years. Yes, at times, it has been with you or Rudy or any one of the Geyling’s in mind. I feel reminded constantly to mature and to love, to care for and pray for.
I pray for you most. Over the last 22+ months I have held your sweet mama heart up for Jesus to heal…well, as much as I can at least.
I love you all so much…
I’m indescribably sad. How I wish it were different. I always loved singing when you were leading worship. At church, when I sit next to someone with a beautiful voice, I sing more confidently, more beautifully (I think!) because my voice mixes with theirs. Judging from the thoughts your friend sent you, you’ll be making me sound even better when I sing next to you in heaven! Love and prayers galore, my friend—Susie
Trish,
You continue to inspire me and you are loved by so many from all over the world. Lots of love strength and courage sent to you and your family.
Love your UWP Brother
Randy
Love you so much. Yes, this word is more than appropriate .
George Matheson is our retired pastor ! Brother George, the most eloquent, highly educated , strongly southern accented pastor … a gem.
I’m always amazed at your eloquence and thoughtfulness – you sing to all of us through it, even now…
Trish, My heart aches as I read your blog as you describe how ALS is affecting your limbs, your swallowing and your breathing. So.Not.Fair! You still, in the midst of your trials and sorrow, cling passionately to Christ and expose Him and His awesomeness to all those around you. You are a GIFT!
“Another in The Fire”…what an incredible song. I so wish I could physically do something to help you in your daily struggles! You know that you are close to my heart and are in my prayers. You have such a wonderful family and I love you all dearly!
Rudy’s Courtyard is looking great! Hugs to you all. I love you so!
Fuck indeed!!
I don’t know of anyone who could go through all of this with the grace that you have and the unbending faith.
Always in my prayers and my heart, Kelly
Fuuuuuuck! I will say it right along with you. Trish my pain and agony over your trials are so very real but my respect and honor for your love for God and your faithfulness in the journey is Glooooorious! Doesn’t sound possible does it? Only in Gods economy.
You my friend have been prepared well and the lyrics of that song you shared seem very prophetic. I will sit next to you again someday singing with beautiful voices and sharing in hindsight the glorious favor of our God.
Continue to live well and in His presence my friend. Well done, well done.❤️
Trish, I grieve with you in the further loss of independence and tasting food! I’m just so sorry. I continue to hold you up to our Lord. Sara
Dear Trish, I started reading your blog after my grandson passed away as a result of his HLHS. He was 2 1/2 years old and thriving when he suddenly and shockingly passed away. After years of reading your blog I have come to admire you and your family’s strength and look forward to your posts. I am so sorry about your illness, it truly sucks. I hope that you continue to have a good quality of life for as long as possible.
Well Trish using profanity. I think I have seen everything now and I agree with you whole heartedly. I am so sorry about the catastrophic loses and cannot fathom how scary and lonely it could feel. I am beyond grateful for a Savior who knows suffering and walks with us. Even though the floods come and the suffering is overwhelming; I know more than we can imagine is around the corner. Love you!!!
Dear Trish,
Your courage to share your journey do freely and honestly with all of us is a gift that can never be repaid. Bless you. I’d love to send that hummingbird feeder. May I drop it off at the Mission with Rolf?
This is really fucked up…you are one of the sweetest souls I know! Much love to you and your awesome family….❤️
Dear Trish,
Most certainly the clearest and most apt title yet. Your brilliance is ever-present through the darkness. Sending you much love.
Cathy
Honey — YOU USE WHATEVER THE HELL LANGUAGE YOU WANT TO. Got that? I am so very sorry, my friend. More than even obscenities can articulate. (Although they definitely help.)
Trish, the respect I have for you is tremendous. You are going thru many mental and physical changes and only use one word of profanity? You are entitled to at least a dozen more. Thank you for sharing from your heart to allow me to pray specifically for grace in the moment. My brother-in-law lived this journey too and it was difficult. I’m praying for Rolf and the kids. Love and hugs.
Trish, the respect I have for you is tremendous. You are going thru many mental and physical changes and only use one word of profanity? You are entitled to at least a dozen more. Thank you for sharing from your heart to allow me to pray specifically for grace in the moment. My brother-in-law lived this journey too and it was difficult. I’m praying for Rolf and the kids. Love and hugs.
Dear Trish, I do not expect that you will remember me. I am Kristin Kirchmaier’s oldest sister, living in Romania and serving with Young Life. Your writings are a gift, reaching out and blessing, halfway across the world. I wish I could reach and give back a little to you, to let you know how much your words have meant to me. The only thing I can think of is that I can pray for you during my day, 10 hours ahead of yours, so that way I can be praying for you during your fitful nights. So as your night begins, I will light a candle and lift you up before the Father. With His Love from Romania, Brandi Bates
My, sweet, sweet friend. My heart aches for the wretchedness of this disease bringing you low. I want to scream out….why Lord? I know that He has allowed this, and indeed must have his reasons, which will always be a mystery until I see him in the hereafter. I Pray, and Pray and will continue to do so. Loving you every minute and everyday.
Lin
Your use of the F bomb is fitting and not a lot of words would be. Thank you for sharing your very real thoughts and feelings and the things that have encouraged you. I love you, Janice
I’m with pastordt…could not have said it better!
Oh, Trish, I hurt for you and your family…& pray for you. You remind me of David as he wrote in the Psalms so brutally honest, yet always ended up pointing to God and HIS faithfulness, love. mercy and presence. I LOVE the song you posted: Another in the Fire. It summarizes it well. YOU are loved my friend. We pray for you often!!
Times are truly bad if my sweet cousin uses that word. Not a word I would EVER associate with you. But by golly go for it Trish! Not my kind of word either but heck I’ll holler it loud with you. Please know we all laugh, cry, grieve and pray with you and yes we will cuss with you too cousin. Love, Cousin Dianna