It’s time for another disclaimer. The weakness in my arms and hands is making it harder to write and type and so I’m falling behind in my correspondence. Rather than fret over it, let me say I read everything whether it be a card or comment or email or text or IM and I appreciate EVERY communication that comes my way. So please, keep ’em coming and know that if my responses are delayed or curt or whittled down to an expressive emoji, it isn’t due to a lack of interest or gratitude…simply a matter of mechanics. 😉
It’s getting hard friends. The growing number of limitations and the practical implications can be crazy-making. After a super fun day with my dear friend from high school Annie & her daughter Sara visiting from Indianapolis and a fun win for the DP lady laxers, I had an unsettling choking incident at dinner on Tuesday night which wore me out and led to difficult transfers once we got home and a fitful night’s rest. I admit the sequence of events left me feeling defeated & desperate. Then, Rolf & I went to my neurology check-in the following day and we crossed paths with another patient farther along in the journey. I looked at Rolf and cried tears of gratitude for where I am and panic about where I’m headed all at the same time. Up, down, up, down…the roller coaster is real and it’s a constant challenge to live in the moment and not lose sight of all the goodness in my life…so much that is good!!! Lessons in perspective regarding the physical, emotional and spiritual experience in this journey are reiterated over and over…with increasing depth and meaning as time goes on.
Shortly after my diagnosis a year and a half ago, I mentioned how I felt God was telling me that my ALS journey was going to be just as much (if not more) a spiritual one as a physical one. How very true that is turning out to be. Ironically, it is taking me being stripped of everything…systematically…little by little to show me how integrated AND how uniquely separate my spiritual journey is to/from my physical existence. ‘Sounds kind of mystical and I’m sorry about that because I don’t want to lose you. I think what I’m trying to say is my faith experience isn’t about “being spiritual” but rather recognizing that I am spiritual, aligning myself with what God is doing all around me and choosing to spend as much time on my spiritual needs as I do on my physical needs…making the day to day not only purposeful but full of life…especially now. As a Christian, I believe that God put this all in motion, Christ reconciled me to God in relationship and the Holy Spirit exists to empower and guide. I have such a greater appreciation for the triune as time goes on…a multi-layered expression of love in a multi-layered life experience…especially now.