
A few weeks ago, I experienced a severe case of PMS. No, not that kind—I’m way too old for that. The PMS I’m referring to is “Poor Me Syndrome.” When it comes to an irregular schedule, there’s no way to prepare. It strikes out of the blue like a sudden vertical wind shear for an airplane. In an instant, I felt 3,000 feet lower in altitude and completely unprepared. This condition hits when you least expect it. Living with ALS is a moment-by-moment, if not day-by-day, adventure. Emotions can be incredibly challenging to manage. Triggers can surface at any time.
This particular episode of PMS began while I was shopping online for Christmas gifts. That should be fun, right? I had my credit card ready, catalogs in front of me, and fast internet service. What could possibly go wrong?
Suddenly, out of nowhere, I was overwhelmed by sadness. I wanted my life back. I wanted my body back. I was exhausted from needing to ask for help with anything that was beyond my reach or too heavy for me to lift. (A small cup of coffee is actually too heavy for me to lift.) Even a glass of water requires assistance. I asked for help with something simple: adjusting a pillow to support my arm. Yet, I could hear the tone of my voice, which reminded me of the frustration I felt every 28 days in my youth. Ten minutes earlier, I had been perfectly fine.
It wasn’t anger; it wasn’t frustration. I was grieving the loss of holidays gone by—traditions that are no longer practical or possible. I desperately wanted to stand up, take a walk, clear my mind, and express how I felt. But I couldn't do anything in that tidal wave of emotion that knocked me down. At that moment, I wasn't sure what was happening in my mind. I understood why my husband was confused and frustrated with me, but I couldn’t articulate my feelings. I wanted him to read my mind and understand, even though I knew there were times he probably wished he could, just as we both value the privacy of our thoughts. The words weren’t there; I often couldn’t explain them to myself. Why couldn’t I just be grateful for all the blessings in my life? Lord knows I am blessed beyond measure in so many ways. Why do I vent my frustrations on the one who loves me the most? The one who responds when I call, who picks up the things I drop, who reaches what I can’t? He is the man who loves me even when I’m unlovable.
I know it’s ALS speaking, but those words come from my mouth.
After a night of sleep, I remembered that joy comes in the morning. Lamentations 3:21-24 says, “But this I call to mind, and therefore I have hope: the steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. ‘The Lord is my portion,’ says my soul, ‘therefore, I will hope in him.’”
There is joy in the morning. With my "stinkin’ thinkin’" and my PMS resolved, I could remember that I will never be alone. The Lord is always with me. I recognize that truth is not defined by my feelings or circumstances but by what the Bible tells us. His plans for me are good. He will never leave me or forsake me. Is living with ALS difficult? Absolutely. Has it given me gifts and blessings I could never have imagined? Yes! The gift of time—time with the Lord, time with myself, and time with my husband. I have witnessed the look of love in his eyes when his worry and heartache peak. I am grateful he will walk this journey with me wherever it leads. I trust this because I know he relies on the strength of the Lord just as much as I do to get through each day. As Ecclesiastes 4:9 states, “Two are better than one; if either of them falls, one can help the other up.” I have also had unexpected times with family and friends.
In living with ALS, I have learned to find joy. It’s an incredible gift..
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