Just a girl w/#ALS

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🌿 My Night in Gethsemane Last night felt like my own small taste of Gethsemane. As the hours dragged on, the pain didn’t just visit — it settled in and grew heavier. My eyes burned until the ache crawled up into my head. My sinuses throbbed so hard I could feel the pressure in my teeth. The nausea came next, that sickening wave that makes you wonder how much more a body can take. And in that moment, I was tired — tired of fighting, tired of hurting, tired of carrying this disease for eleven long years. ALS has a way of stacking battles on top of battles. Physical pain. Mental strain. Emotional exhaustion. Spiritual questions that don’t have easy answers. As Tanja slept beside me, peaceful and unaware, I lay there drowning in tears. I whispered to God, “Why do I have to go through this? Why this pain? Why does it keep coming in waves like this? Why does it hit when I don’t have anything left?” It wasn’t anger — it was anguish. It was the cry of someone who has been strong for too long In that moment, I felt what I imagine Jesus felt in the garden… not the full weight of it, because I’ve never sweat blood… but I understood the loneliness. When He asked His disciples to stay awake… and they couldn’t. When He was surrounded by people… but still felt alone. That’s how ALS can feel. You can have love all around you… family, caregivers, support… and still feel like you’re fighting a battle nobody else can step into. There are battles only the person inside the body can feel. I looked over at Tanja… and even though I know she loves me deeply… in that moment, it felt like… You’re on your own. And if that moment doesn’t make you pray… nothing will. Because when the pain is coming from everywhere at once… and your spirit is low… prayer stops being a routine and becomes a lifeline. Now hear me clearly… especially to my ALS family… I go through it too. I have lows… and sometimes they are extremely low. Moments where I am tired of pushing. Moments where the isolation feels louder than the support. This morning I woke up in better spirits, but when I watched everyone eating, laughing, talking — living — that ache came back. Not out of jealousy, but out of longing. I can’t eat with them. I can’t join the conversation. I’m present, but I’m not included in the same way. And that kind of loneliness is its own kind of pain. ALS can be a lonely place. But here’s the fight… the real fight… You cannot stay there. You acknowledge the pain… but you don’t build a home in it. You feel the loneliness… but you don’t let it define you. Because even in that garden moment… Jesus got up. And so do we. So to every patient… every caregiver… every family member… I see you. I feel you. I understand you. And even when it gets heavy… We still fight to find something to smile about.

Once you realize that anything can happen—sickness, death, or losing your job, literally anything in the blink of an eye—you become very humble. Tables turn, and that’s how crazy life can get. Always pray, stay humble, and be thankful.