“I am poor and needy.”[i] Since I was a baby, and throughout my life, I have been slowly and relentlessly stripped of strength and abilities by progressive motorneuron disease. Crawling, sitting upright, lifting, grasping — one by one, things that I used to be able to do were no longer mine. I don’t have the […]
“Son, why have you done this to us?”[i] Okay. I’m just going to say it. I don’t want to contract covid–19 and die. I don’t want any of my loved ones to die from it either. I’d rather that none of us die at all. Well … that’s not exactly true. An endless life of […]
“Remain here and keep watch with me.”[i] I’m quite helpless. And I’m afraid. This Lent, as I continue to examine my struggles and weaknesses in the light of Christ, I need to take a breath before sharing this particular part of my journey with you. I’m a little afraid to admit to my fears. Some […]
“It was our pain that he bore, our sufferings he endured.”[i] I love being alive, body and soul. Sometimes, though, I think that my diseased, crippled body looks like it’s been tortured, left to collapse upon itself. And sometimes … well … it feels like a tortured, heavy burden to bear. God knows. One of […]
“Not my will.” How many times have I desperately longed for my life of progressive disability to be different? For countless hours upon hours I have agonized, with teenaged hormones raging, wanting a different path, begging to be released from the nevers of my life, from the crippling confines of my disease. Far too weak […]
