September 18th marks the two-year anniversary of my diagnosis. It also marks my official entry into the average lifespan of someone with ALS. This is especially sobering considering I felt the onset of my symptoms a year and a half before my diagnosis…’not sure how all that factors in, but I guess it doesn’t really matter anyhow because I don’t need a calendar to tell me my disease is progressing.
If I had to choose one word to describe the past 2+ years it would be relentless. Rudy’s death came like a giant rogue wave knocking me off my feet and then, BAM!, another one came with my diagnosis pulling me under into a rip current that has steadily taken me farther out to sea. Although we, as a family, have made the most of our circumstances at times in the past two years, the experience itself for me has been relentless…harsh, oppressive, constant, inflexible, suffocating. I guess this is where the hope of Heaven becomes particularly comforting but I really wish there was room in this disease for a break in the here and now.
We reorganized my care. My amazing team of caregiver friends doubled up from a two-week rotation down to one with two, sometimes three, shifts daily! I am surrounded and I am blessed. I have also never been more emotionally alone. It comes with a terminal illness, I think, because I can’t fully identify with my loved ones’ pain nor they mine. I know God can identify with my suffering but I wonder sometimes if He can truly identify with all of the crazy, irreverent, gut-wrenching and immobilizing emotions swirling in and through me all the time. I know that nothing can change the fact that God is near but that doesn’t make this journey any less lonely….that part is inherent and I’m learning not to be threatened by it.
13 thoughts on “Relentless”
No words, but I love you so much and so grateful He is holding you and your family along this painful journey. Wish I lived closer to help. 🙏🏻😘🤗🙏🏻💖
Love you, friend! This day is definitely not a great day to remember (two years ago)! ALS is and has been relentless. I am proud of you and your family and caregivers for leaning in and enduring it.
I love you sweet daughter, and pray for you all always😘❤️
Not a day goes bye without my asking God to bless your day. I know He is doing that even in the midst of struggle. May He give you just what you need for every minute of this journey and stay close to your heart and mind.
Praying for you dear one. God is holding you in his arms.💒
I love you Trish. Those are the only words I can muster. Your friendship, your kind heart, your sweet voice…it’s what I hold tightly to. Listening to old videos of worship rehearsal and of Rudy’s voice…that sweet voice…I don’t know how to connect with you, all I know is that I’m holding tightly to every moment I’m able to look into your sweet eyes and tell you that I love you. You are a blessing, more and more each day.
You & your beautiful family are in my thoughts & prayers.
Uuggghhhhhh! It’s just heartbreaking. Trish, I think of you constantly. I am wearing the earrings today that you gave me in February at the TrishFest. I just love them!
Lord I ask that You bring some relief please. I continue to praise You in the midst of this terrible storm. Bring peace to my precious friend. I thank you for the friends that surround Trish and for those who are there to help each day. Give each one the strength they need to carry on. Comfort Trish in her times of despair Lord. Give her a JOY inexpressible! May Trish experience You and You alone on a supernatural level that cannot be explained in human words. Lord I am asking for the Heavenly realm to envelope Trish. Show her great and mighty things that she may not be aware of. Open her eyes to Your glory. Carry her through this day so that she can literally feel Your loving presence. I ask this in Your Mighty Name! Amen, Amen & Amen!
I love you my beautiful friend!
Love, peace, prayers and more love sent to you and your family. I love you my UWP sister.
So very true dear Trish…. nobody can fully understand your pain and it’s hard for you to understand the pain of your loved ones. I grieve for them, but
especially for you- I shudder to think of the relentless battle you face every minute coupled with the fact that you cannot DO much to distract yourself from it all!!! I pray that somehow your will sense whispers of relief in His presence. He hates this too. May you feel His love through those angel- ladies that find it an honor to serve you!
Trish, no words can express my heart’s response to your feelings and thoughts except that I pray for you everyday that God will hold you in His loving arms and relieve the painful symptoms physically, spiritually and emotionally of this terrible disease as much as possible. Please know that I am here for you and am willing to be of any help I can if you need anyone on your team of caregivers. I love you and your family very much. I will be walking the American Heart walk this Sat in memory of Rudy!
Oh Trish, this is so difficult, yet I praise God that you have such a loving team around you. I pray for grace for them, your family and for you and that you will be able to learn a new method of communication without words. May the Holy Spirit speak between you all. Hugs!
My Dear Friend. My heart breaks knowing you feel alone. If only WE, as your friends, could be holding you and constantly re-assuring you we are HERE, desiring to make you feel the support and love we have for you. My Ex-Husband is navigating his Stage 4 Cancer, and I know that when we leave his side, he struggles too. How can you not? Please know that every day, you are in our hearts, minds and prayers. We pray for a ‘miracle’, healing, comfort and God’s presence to always envelope you. I love you, dear friend.